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The biggest challenge, I find, is to be optimistic. Not about Walker — he takes care of that — but about his future. The longer I spend in the world of my son's disability, the more people I meet who rise to that challenge. They are some of the most impressive people I've ever encountered.
Shelly Greenhaw might be one of them. She lives in Oklahoma City, and has one of those terrific wide-open Oklahoma accents, voice as clear as a plain. Shelly's early life had been full of charms: She played varsity softball in college ("I started out in left field, but by junior year I was a catcher") and was Miss Congeniality in the 1995 Miss Teen America pageant. And then five years ago, she gave birth to Kinely, who has cardio-facio-cutaneous syndrome, like Walker. A year later, Kamden was born, with what looked like an autism-spectrum disorder.
She started life all over again — the kind of personal renewal most people dread. But it worked. "I'm excited to see what's in store for my girls," she said. "And kind of, how they're going to brush up against others." She is a Christian — that helps. She works hard to stay positive and campaigns against the word retarded. Lots of kids, she said, have a rougher road than hers do.
"I just feel real lucky that we have a walker and a talker. Having the girls has changed the way I communicate, changed the way I treat people. Life doesn't scare me any more. I don't fear the unknown."
Nowadays, she said, every time she sees someone in a wheelchair in the mall, she wants to run up and hug them, a notion that flabbergasts me. But she admitted that she has her dark days too. "I have my moments. I wish I knew why. Because my little girls are the greatest example of selflessness and good nature that I know. And yet at the same time I feel a deep sense of loss for them … that some of their hopes may be crushed. That they won't experience the same kind of acceptance we've given them."
The light they threw on her life and the darkness that hovered around them went hand in hand. Lately, Shelly said, she has been thinking that Kinely can get married, have a husband. "I'd never even considered a partner for Kinely," she said. "I was thinking too small. But now I think really big for them." (I should have given her Walker's number.)
But the international arc lamp of optimism is France's Jean Vanier. The first time he visited an institution for the intellectually disabled in the early 1960s, he immediately heard their "cry for friendship and relationship." Mr. Vanier — the son of former Canadian governor-general Georges Vanier — is the founder of L'Arche, a series of communities for the disabled that now reaches around the world. He's the world's foremost thinker and philosopher on the rights of the disabled.
"I realized instinctually," he has written of that first encounter, "that what they needed most was a family environment, a place of belonging where they could be themselves, grow in inner confidence and freedom, and enjoy life with others."
Mr. Vanier is a radical. He is not, for instance, a supporter of integration, the current educational orthodoxy that the handicapped should live within the normal community, as pretend normals. He insists instead on the right of the handicapped to live apart, on "the children's right to be different, to be separate from their parents, to be free to be whoever they want to be." Instead of integrating the handicapped into the normal world, he calls for the able-bodied to be integrated into the world of the handicapped, to live among them — because that way, we will learn more.
This is the model Walker's new home operates on. Every time we meet someone who is severely handicapped, Mr. Vanier believes, they ask a question: Do you consider me human? Do you love me? Our answers define not only who we are, but how human we want to be.
The more we meet the handicapped on their own ground, rather than our own, Mr. Vanier says, the more we evolve. We begin in fear of their appearance and behaviour; move on through pity; pass through the stage where we help them and respect them, but still see them as lesser beings; until finally we experience "wonderment and thanksgiving," and "discover that, by becoming close to disabled people and entering an authentic relationship with them, they transform us. They help us to move from the personal desire for success and power to a desire to be with those who are weak and help them to be just as they are, knowing that we receive as much or even more than we give."
In the last and highest stage, "we see the face of God within the disabled. Their presence is a sign of God, who has chosen 'the foolish in order to confound the strong, the proud and the so-called wise of our world.' And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: They bring us closer to God."
I can't begin to describe the extent of my admiration for Jean Vanier, the originality and bravery of his stance, the selflessness of his work on behalf of people exactly like my son. I think his model for communities of the handicapped is without peer.
I only wish I could believe in his God as well. Because the truth is, I do not see the face of the Almighty in Walker, and it would demean him to try. Instead, I see humanity, the face of my boy. Walker is no saint and neither am I. I can't bear to watch him bash himself every day, but I can try to understand why he does it. The more I struggle to face my limitations as a father, the less I want to trade him. Not just because we have a physical bond, a big simple thing; not just because he's taught me the difference between a real problem and a mere complaint; not just because he makes me more serious, makes me appreciate time and Hayley and my wife and friends, and all the sweetness that one day ebbs away. 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. There is no planning with this boy. I go where he goes.
The face of God? Sorry, no. More like a mirror, reflecting everything back, my choices included. For me — this is the best I can think of him, the way I most want to think of him — Walker is like the vessel Wallace Stevens wrote about:
I placed a jar in Tennessee,
And round it was, upon a hill.
It made the slovenly wilderness
Surround that hill.
The wilderness rose up to it,
And sprawled around, no longer wild.
The jar was round upon the ground
And tall and of a port in air.
It took dominion every where.
The jar was gray and bare.
It did not give of bird or bush,
Like nothing else in Tennessee.
I realize it's not much to go on, not much of a light to see by. It easily wavers. But it's the best I can do.
Not long ago, I had a dream about Walker. He was in his new house and I was visiting. He was very, very, very happy: He still couldn't speak, but he understood everything and could instantly convey all he wanted to say, in murmurs. After our visit, he walked me to the door of his house to say goodbye, and stood there, beaming. His housemate Chantal, or his other friend Christa Lee, or some combination of the two, was behind him. It was clear she was his girlfriend. That pleased me: I knew he had finally found someone to love and someone to love him, not just in the public way everyone loves Walker, but in a way only he could understand — his own private love, at last, to give and receive. And he loved me, and I loved him, and we both knew it. He smiled as I said goodbye, and gave me his blessing. He had forgiven me for his life. But in the end it was just a dream.
