Our Muse & Views Book Club met at Shirley's home to discuss Jane's choice The Boy in the Moon by Ian Brown. Present were, Betty, Colette, Jane, Jolene, Linda, Michèle and Shirley of course. Shirley had spent the day cooking and we had some wonderful hors d'oeuvres, Jamaican patties, a great dip with veggies and a lovely pumpkin cake.
Ian Brown is a Canadian journalist who works for the Globe & Mail. This book is a recount of his struggle in searching for the best possible life for his severely disabled boy Walker. It is also a journey through the evolving genetic research going on in many labs across North America that Mr. Brown takes us through as he strives to learn as much as possible about this rare disease that Walker has, called cardiofaciocutaneous syndrome (CFC). He won for this book, the B.C. National Award for Canadian non-fiction, the Charles Taylor Prize and the Trillium Book Award in 2009. Jane said that she hesitated before recommending this book but felt that the book was so well written and had touched her so much she wanted to share it.
All members present felt the book was certainly worth reading but some had difficulty getting through it because it was for them, so very emotional. One member commented that Mr. Brown is heart wrenchingly honest and compassionate in his description of his son Walker. The love he feels for his son is indisputable and present on every page of the book. He is also not afraid to show frustration and anger in dealing with the health system and the provincial welfare system. Though there is no description of impatient tirades with doctors or government administrators, it is easy to understand, by his description of waits in hospitals to see specialists for example, that he is a tad cynical.
We had a discussion about how society treats those who are disabled, the need to integrate them and accept them as they are and for who they are. The teachers in our group talked about integration in the classroom and how other children come to accept them and include them in activities much more easily than we do as adults. However, all agreed that not all disabled children can integrate into the educational system as it exists with its limited resources.
All said that the book was uplifting even though the despair he sometimes felt at night for example came out in his description of events. This book describes almost uniquely, Mr. Brown's experience, emotions and journey he has had with his son. There is very little about Ms. Johanna Schneller's experience, his wife and Walker's mother. It is however, very evident that both love their son unconditionally but experience the journey with Walker very differently.
Mr. Brown wrote several chapters about his visits in France to meet Jean Vanier the founder of l'Arche, an international organization that supports intellectually disabled adults. A exchange by correspondence between Mr. Brown and Jean Vanier, published in the Globe and Mail is very much worth reading.
Many of us thanked Jane for recommending "The Boy in the Moon". It was a book for some, difficult to read but very much worthwhile that made us think seriously about how society treats the disabled. Ian Brown referred to Robert Latimer who asphyxiated his severely disabled daughter in 1993. "The big remaining question for me is, why isn't our province on trial? ..... That family wasn't getting the support they needed...." Isn't that true across the country, the disabled are often an afterthought.