When Walker Brown was born in 1996, his parents Ian and Johanna knew something was wrong. Seven months later Walker was diagnosed with CFC — cardiofaciocutaneous syndrome, an extraordinarily rare genetic mutation that didn’t even have a name until 1986, or a genetic test until 2006. Estimates vary, but as few as 300 people in the world have CFC. As the months unfolded, it became clear that Walker was profoundly disabled.
As a baby he cried non-stop for hours. He has the signature facial dysmorphia of CFC. He never sleeps through the night and can’t talk. Eating difficulties necessitated a feeding tube. Significant heart and skin irregularities compromised his health. Worst of all, Walker would hit, bite, and scratch himself. Before long his medical record was six inches thick. The first geneticist that Ian Brown met told him that there were only eight other cases in the world. “Eight: it wasn’t possible. Surely we had been blasted out to an unknown galaxy.”
Brown later learned that CFC was caused by a random mutation in three genes. As a “fairly conventional atheist,” he understood the implications: “The scientific definition of evolutionary success, of a successful random mutation, is one that allows the organism to survive and reproduce. Nature alone would not have allowed my son to live. By the judgment of a geneticist, Walker was a deleterious effect of nature.” Brown didn’t resent the geneticist who used those exact words. “What I resented was the idea of my son’s life reduced to a typing error in a three-billion-long chain of letters, to one dinky nucleotide.”
So what is the meaning of Walker’s life — to himself, his family, and society? Is he no more than a “deleterious effect” of genetics? Brown’s memoir, The Boy in the Moon, tells how he’s tried to answer that question. The book has won numerous prestigious awards in Canada (where Brown lives). The New York Times named it one of the top five non-fiction books for 2011. I can’t remember reading a book that’s so carefully crafted, so brutally honest, so tenderly written, and so life-affirming.
The book describes the upheaval in his family and marriage, the sleep deprivation, the emotional exhaustion, and financial worries. He battles the bureaucratism of public schools, hospitals, and government agencies, most of which are staffed by competent and well-meaning people but which nevertheless standardize “one size fits all” protocols guaranteed to stymie the many. The internet made connections with other CFC families possible, and Brown visits them to trade stories. When Walker turned eleven they faced the agony and necessity of placing him in a group home (where he flourished): “Life with him and life without him: both were unthinkable.” Aggravating it all were the chronic feelings of guilt, shame, and failure that haunt parents of the profoundly disabled.
One of the many people Brown met was the fellow Canadian Jean Vanier, who in 1964 started the first L’Arche (the French word for “shelter”) home for the severely handicapped. Today there are over one hundred L’Arche homes in thirty countries. The purpose of these specifically Christian group homes, says Vanier, is not to “normalize” the disabled according to the standards of society, or to solve all their problems, which is never likely to happen, but rather to celebrate them as sacred gifts of God who have their own gifts to offer us.
Brown first visited the L’Arche community in Montreal. He then traveled to meet Vanier at the original L’Arche home in Trosly-Breuil in France. For several days he lived among the disabled, ate with them, talked with the staff, and experienced their community. It made a profound impact on him. During his interviews with Vanier, the latter insisted that whenever we meet a severely handicapped person, they want to ask us just two questions. Do you consider me human? Do you love me?
When we meet a profoundly disabled person, says Vanier, we go through several stages in our relationship with them. We probably begin with fear or pity at their appearance and behavior. Perhaps we progress to help them. Maybe we even respect them for who they are, although at this stage we still consider them less than normal. Finally, says Vanier, if we meet the disabled on their own ground, we behold them with wonderment and thanksgiving. We embrace them as fully human and love them for who they are. We can even see the face of God in them, for God uses the weak to confound the strong.
Brown describes the many things that he’s learned from Walker, like the difference between a genuine problem and a petty complaint, the sweetness of a single day, and precious time with his wife and daughter. But Walker took him to even deeper places. “I’ve begun simply to love him as he is, because I’ve discovered I can; because we can be who we are, weary dad and broken boy, without alteration or apology, in the here and now. The relief that comes with such a relationship still surprises me.”
Brown is an atheist, so he doesn’t see the face of God in Walker as suggested by Vanier. But he resonates with Vanier’s two questions: do you consider me fully human, and do you love me? Life with Walker has deepened his love. Walker had horribly bad luck in the DNA lottery, but he’s also the antidote to our many forms of false-consciousness; he never tries to be anyone but himself. He invites us to love him like he is, which is about the best thing any human being could ever hope to give or receive.
“Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love… Dear friends, since God so loved us, we also ought to love one another… If anyone says, ‘I love God,’ yet hates his brother or sister, he is a liar. For anyone who does not love his brother or sister, whom he has seen, cannot love God, whom he has not seen. And he has given us this command: Whoever loves God must also love his brother or sister.”See Ian Brown, The Boy in the Moon; A Father’s Journey to Understand His Extraordinary Son (New York: St. Martin’s Press, 2009), 293pp.