Here’s a review of one of the best books I’ve read this year.
Some excerpts:
“It was only later, alone, at night, having battled for hours to get him to sleep, only to find myself sleepless, that I sometimes considered the cost of his life, and the alternatives. had the doctor been asking me if I wanted to let Walker’s life end, as nature would have ended it on its own? I sat on the back steps of our little house in the heart of the city at 4 a.m., smoking and thinking the unthinkable. Criminal thoughts, or at least outlandish ones: what if we don’t take extraordinary measures? What if he gets sick and we don’t work so hard to get him better? Not murder, just nature. But even as I considered these grave plans, I knew I could never enact them. I’m not bragging; my hesitation wasn’t ethical or moral. It was more a medieval urge, instinctual and physical; fear of a particular mode of failure, fear of retribution if I ignored the dull call of his flesh and his body and his need. In any event I felt like an ox slipping into its yoke. I could feel the heavy tragic years coming on ahead of me, as certain as bad weather; there were nights when I even welcomed them. At last a fate I didn’t have to choose, a destiny I couldn’t avoid. There was a tiny prick of light in that thought, the relief of submitting to the unavoidable. Otherwise, they were the worst nights of my life. I can’t explain why I wouldn’t change them.” [pp 26-27].
“So you can perhaps forgive me for thinking, some days, that Walker has a purpose in our evolutionary project, that h is something more than an unsuccessful attempt at mutation and variation. For thinking, probably vainly that if his example is noted and copied and “selected,” he might be one (very small) step toward the evolution of a more varied and resilient ethical sense in a few members of the human species. The purpose of intellectually disabled people like Walker might be to free thus from the stark emptiness of the survival of the fittest.” [p. 234].
“Every time we meet someone who is severely handicapped, Jean Vanier [founder of L’Arche] believes, they ask two questions: Do you consider me human? Do you love me?…
In Vanier’s last and highest stage of consciousness, ‘we see the face of God within the disabled. Their presence is a sight of God, who has chosen ‘the foolish in order to confound the strong, the proud and the so-called wise of our world’…
I wish I could believe in Vanier’s God. But the truth is, I do not see the face of the Almighty in Walker. Instead I see the face of my boy; I see what is human, and lovely and flawed at once. Walker is no saint and neither am I…I have 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.” [pp. 284-285].
SEVERELY DISABLED SON WALKER