Monday, April 25, 2011
The Boy in the Moon by Ian Brown
Ian, his wife Johanna, and the older sister Hayley spend 13 years caring for Walker round the clock until the parents finally find a suitable group home for him. Ian then embarks on a journey to discover what, if anything, his son's life means to him, to the community and to humanity. Surely there must be some answer as to what his life means?
The author travels around Canada and the US meeting other families with children that have this syndrome. He travels to California to meet the geneticists who first confirmed this condition and understand how a mutation on a gene can occur to create the condition. He goes to France to meet advocates for the disabled, philosophers of disability studies, and to visit communities of severely disabled. He looks at his own heart and mind and reactions to people like Walker and he takes a cursory look at how the severely disabled have been treated in the Western world throughout history.
I was fascinated by the picture he painted of his life, his marriage and his unending love for his son. He thoroughly examines all the ethics at work in studying genes that produce disabled humans, the ethics of how we treat the least of all in our care and the philosophies behind how to treat these children. It was all wonderfully enlightening. A fascinating look at people who we don't like looking at or even being around.
I am humbled by the questions Mr. Brown raises and by his own love for a child who most of society will always see as lesser. I really understood the love he described for his son, and his own interest and passion for helping and understanding the disabled helped me understand a bit more about being a parent.
If you are interested in my copy of this book please let me know and I will pass it along.