When my husband and I set out to have a baby, we never really considered the possibility that the baby, our baby, would be born anything less than healthy. Oh sure, we discussed it briefly, but then the discussion always turned to other matters. I suspect that for most people, this is how we view disability: it is something that happens to other people, and we only ever confront it if we absolutely need to.
The Boy in the Moon is author Ian Brown’s personal story of what happens when you and your family are suddenly confronted by the birth of a child who is not “normal”. The book started out as an extensive article in the paper Globe and Mail, and was expanded vastly into this full-length account, which went on to win the 2010 Charles Taylor Prize for literary non-fiction. Brown’s son Walker was born with a rare genetic syndrome that is so common that only a handful of people around the world are born with it. Walker, who is approximately 12 years old as of the writing of this book, is severely mentally delayed and is unable to speak or communicate through language, still wears diapers, has a variety of medical afflictions and bangs his head obsessively with his fists. Brown describes in depth his life with Walker, and the meaning he tries to find in his Walker’s life.
What is the value of a life like his – a life lived in the twilight, and often in pain What is the cost of his life to those around him?
The Boy in the Moon, page 3
Perhaps what is most striking about this book is how Brown writes so honestly and truthfully about his son – both the moments of pure joy and the heartbreaking challenges of living with a severely mentally handicapped child with its attendant strain. He speaks bluntly of the day-to-day difficulties of raising a child with such unique needs and the demands it places on the family: the sleepless nights, the financial costs, the constant worry, but he does so without it ever striking the reader as a list of gripes or an attempt for sympathy. At the same time he is clear to note that he is not a “disability masochist” who finds pride in the physical, mental and emotional costs of raising a child like Walker. Brown is clear that this is his life, good and bad, and he is neither martyr or saint. It is refreshing point of view, and I think many of us would end up in the same place but with less freedom to say so. Society expects a great deal of the parents of disabled children, that they subsume themselves in the care of their children and to also like it. Brown’s book is a direct argument against this way of thinking. By journeying with Brown and his family into the depths of life with a severely disabled child we see why this isn’t possible, or, dare I say it, fair. As Brown himself points out, 15-20 years ago a child like Walker would not have likely survived. Medicine has made it possible for children like Walker to live, but society needs to catch up with its response and responsibilities to the families of these children.
Later in the book, Brown travels across the continent meeting families of other children like Walker. He meets parents who are frustrated or resigned, and parents who describe their disabled child as the best thing that ever happened to them. He then travels to Europe to visit L’Arche, a community for adults as mentally disabled as Walker, to try to discover what type of life Walker might have, what will he do. None of these really bring him closer to his son, and although these parts are interesting, I would say that this section is where the book lagged for me. The strength of Brown’s writing lies in his descriptions of his interactions with Walker and his own musings on the meaning of Walker’s life and Walker’s influence on the people around him, not the people he meets or the places he travels to.
The Boy in the Moon is a beautiful and honest examination of what disability means, to one family and to society as a whole. It doesn’t offer clear answers, and there is no storybook ending and is all the more illuminating for its lack of finality. It should be required reading for anyone looking to bring a child into this world.
The Boy in the Moon: A Father’s Search for his Disabled Son by Ian Brown
Random House Canada, 2009
Hardcover, 295 pages
Reviewed from library copy