The Boy in the Moon: A Father's Search for His Disabled Son (24 page)

“You see?” Vanier said. “You are bathing your own handicap.”

It was a point of view I’d never encountered before, I can say that for it.

“What is it that makes you open your heart to someone else?” Vanier asked.

I stared at him. I had no answer.

“A weak person,” Vanier said. “Someone who is saying, ‘I need you.’” If the need of the person is too great to be satisfied, as is often the case with parents looking after a severely disabled child on their own, the result is guilt and disaster. “But parents in a village where there are young people who are going to come and sit by Walker and take him for a walk, and all that sort of thing, then life changes. But alone, it’s death.

“I mean, it’s crazy. We all know we’re going to die. Some of us will die at the age of ten. Some of us will die at eighty-five. We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening. So the whole question of the human process is how to integrate strength and weakness. You talk about your vulnerability with Walker. Something happened to you, which people who haven’t lived what you’ve lived will never be able fully to understand—you have been able to become human by accepting your own vulnerability. Because you were able to say, I didn’t know what to do.

“We’re in a society where we have to know what to do all the time. But if we move instead from the place of our weakness, what happens? We say to people, I need your help. And then you create community. And that’s what happened here.”

We talked on for an hour and a half. By mid-afternoon the light outside was a burnished yellow. “Unless we move from a society based on competition to a society based on welcoming people back to the village,” Vanier said, “we will never get away from our obsession with strength. In a way, that’s all that L’Arche is: it’s a village where we meet each other. We celebrate life. And that’s what these people do. They celebrate around the weak. When you’re strong, the way you celebrate is with whisky.”

Vanier paused, and laced his hands behind his head. “In 1960, the big question in France was, what sort of a society do we want? Was it the society of Mao Zedong? Was it the society of Russia? Was it a slightly different form of communism? Nowadays, nobody’s asking what sort of society we want. They’re just asking the question, how can I be a success in this society? Everyone, they’re on their own. Do the best you can, make the most money you can. So what sort of vision have we? Somewhere in L’Arche, there is a desire to be a symbol—a symbol that another vision is possible. We’re not the only ones who are doing this sort of thing, of course. There are lots of little communities.”

A community of the disabled as a model of how the world might co-exist more effectively: I have to say, that struck me as a radical idea, even a gorgeous one. It also struck me as hopelessly unrealistic—the sort of idea that is beautiful in repose, that an idealist would love, Vanier included.

So I said, “I think that’s a beautiful idea, but the world doesn’t work that way. People don’t work that way. It takes a massacre of 800,000 people in Rwanda before we try to stop it. We can’t seem to act to prevent the most obvious tragedies—never mind the small, individual ones. So how can I hope to convince the world that Walker ought to be seen as a human being—not just as a disabled human being, because he is that, but also as a human being, who may have talents—just not the talents we expect to find?” What I meant was that I wished the world might see Walker not just as a boy without many common qualities, but as a boy with uncommon qualities as well. But it was too much to think that might be possible. “The truth is,” I said, “the world isn’t that kind of place.”

“There’s a beautiful text of Martin Luther King’s,” Vanier said, without hesitation. “Someone said to him, will it always be like this—that someone will always despise people and want to get rid of others? And he said yes, until we have all learned to recognize, accept and love what is despicable in all of us. And what is that despicability? That we are born to die. That we have not full control of our lives. And that’s part of our makeup. But we need to discover that we are built for something else, too, which is togetherness, and that we have to try and stop this need to be the best. Only then can we build something where there are fewer of these things that are going on in Rwanda and elsewhere.”

I left Vanier soon after that. We were done for the day, and he was preparing to depart for Kenya soon. I ducked out of the cramped stone house in Trosly, walked down the street and up a lane and across a field. I couldn’t decide if I was defeated or enthralled. Vanier’s ideas appealed to people: two of his books had been best-sellers, and several had been translated into nearly thirty languages. He had been awarded the Légion d’Honneur in France and had been made a Companion of the Order of Canada. He had radical ideas: frailty was strength, peace no longer lay in the tolerance of difference, but in the bridging of it through a mutual concession of weakness. I wondered how that would go over in the Middle East—if Israel, say, confessed its fears and weaknesses to Hezbollah, and asked for the Palestinians’ help, instead of vowing to annihilate the source of any threat to Israel’s security. In Vanier’s world, Walker was not a weak link, but an extra-strong one.

Look: I wanted to believe it. Every ounce of me knows my odd little boy can teach everyone something about themselves. Whether that will ever happen is another story.

*
I’m always surprised by the range of people I meet who have experienced the energy of the handicapped, however difficult and even embarrassing that energy can be. Not long ago, for instance, at a Christmas solstice party, I found myself at the cheese tray, standing next to John Ralston Saul, the writer and public intellectual, and his wife, Adrienne Clarkson, the former governor general of Canada. I had only just learned that Saul had written about disability. I asked him what had drawn him to the subject. Saul—a fairly intimidating figure at the best of times—revealed that he had an intellectually disabled brother. “He was certainly the most influential person in my life,” Saul told me, reaching for the Havarti.

“Why?” I asked. But he only looked at me, thinking, until Clarkson answered for him.

“Because John and his brothers were always trying to communicate with him. All the brothers, they wanted to include him. And they couldn’t. And so that left them always wanting to get through to him. Everything else in John’s life has flowed from that.” The process can work the other way, as well. The playwright Arthur Miller renounced his own Down syndrome son, and even denied he existed; a number of critics maintain this is when Miller’s decline as a writer began.

twelve

In my room before dinner, Walker was suddenly there. He often steps into my mind the way a long-unseen but suddenly remembered friend can, opening the door of my memory. I wondered what he was up to, thousands of miles across the sea.

For his twelfth Christmas I bought him a Magic Ball—a “decorative light for tomorrow” that looked like a crystal ball and responded to touch and voice and music. You plugged it in and fingered the glass and tiny lightning bolts raced around the inside of the ball, thick and white and almost molten where your fingers were touching, mingling with pink and purple streaks that emanated out of the centre of the ball. I knew Walker would love it, and he did, once he lost interest in the red and green metal-scaled fish ornament he plucked off the Christmas tree and rolled in his hands for two days straight.

When Hayley finally redirected his focus to the Magic Ball, he stayed glued to it for two hours. (I began to worry it might induce a seizure.) He plunged his hands straight down onto the ball, leaning over his arm gaiters. He didn’t move for five minutes at a time. He approached the zapping lights gravely, like a small Zeus trying to blow the earth below him apart with a single thickened beam.

Johanna went the other way that Christmas, picking up an array of small gizmos: a ball filled with sparkling liquid; a round, multi-striped wooden snowman top he might one day twirl in his hands for several hours on end. Her last gift was the really weird one. It was made of felt, and was six inches long: an orange triangle with a green pompom at one end, and four blue-green stalks protruding from its base for legs. A sober, unsmiling but abstract face had been stitched onto a smaller green triangle, which in turn had been sewn onto the larger orange one. The entire contraption was ostensibly a massive key chain, and looked like a cross between a carrot, a comb and an alien.

“What is it?” I said. She had plucked it out of its bag to show me as soon as she walked in the door.

“I don’t know. I really have no idea. I said to the guy behind the counter, ‘I have no idea why I’m buying this,’ and he said, ‘Everyone says that.’ ‘Really,’ I said. ‘Have you been selling many of them?’ ‘All day long!’ he said.” She was so pleased with the thing.

“It’s fetching, but totally weird.” I turned the thing over in my hand.

“I think that’s why the people who made it thought people might buy it,” she said. Then her face took on a new look, an emptied moment of cognition, a look I knew well.

“I guess I bought it because it reminded me of Walker. Fetching, but hard to figure out.”

Dinner was the centrepiece of the day at La Semence. My French was beyond rusty, but in that house it didn’t matter: I was just one more semi-mute, often incapable of making myself understood.

Everyone at La Semence took dinner seriously. There were flowers on the table. The assistants, being French, took the food seriously; the stews and soups and salads arrived at the table in attractive serving dishes, and were uniformly delicious. Wine was always served, even to the residents, if their medications permitted; there were often guests (like me), and they were welcomed and toasted. The meals always began with ceremony: we held hands and sang grace. That act alone, grasping one another’s fingers, was a prolonged moment of uneasiness—I felt awkward holding hands with someone I didn’t know, and absurd for feeling awkward. And the hands! Whether they were stiff, crabbed, dry, moist, boneless, deep in the palm or fat as scallops, they all hung on; there was no self-consciousness there. Each hand was a world unto itself.

Gégé’s hand was tight: I had to force my right-hand fingers into his small left grip. Jean-Claude held his hand open and then laughed as he took mine, and held on, but there was the limpness of his grasp to contend with, as if he had forgotten that his hands were attached to his arms. I tried to be light-hearted about it. Sometimes he forgot to let go too.

Once grace was finished, the assistants served bowls of green mush for those who couldn’t eat easily, their nightly dose of fibre and vitamins. The rest of us had firmer vegetables.

Everyone wore pyjamas: Jean-Claude in stripes, and a striped terry-cloth dressing gown over them; Francine in her wheelchair in a pink housecoat; Gégé in blue jersey Dr. Dentons, a smaller striped bathrobe over his bent body, but never done up, the belt trailing him like a forgotten task; and of course Lorenzo, the speechless Italian train-lover, in a magnificent dressing gown with silk piping and frogging on the sleeves, a gift of breathtaking luxury for a man with a beggared mind, who stood still in the middle of the room, motionless, arms extended, waiting, expectant as always. But waiting for what? The unknowable thing. He was no different from any of us, I suppose. In this fashion the residents transformed life in the house into theatre. All you had to do, to appreciate the depth of the performance, was watch carefully, and think about what you saw.

The conversation rotated around the table: when JeanClaude burped, which he did frequently, Garry Webb made a face and a joke, or at least a parallel noise. Jean-Claude seemed to appreciate this. Garry improvised in the moment, drawing on his training as an actor. At dessert—ice cream and chocolate sauce—Gégé ended up with a chocolate moustache. Garry immediately started in. “Ah, you have a moustache! Hello, sir. Are you—a crow? Are you Corneille?” (He meant Pierre Corneille, the seventeenth-century French playwright, who had a distinctive dark moustache and soul patch.) “Perhaps you are a Mexican bandit! Yes—Sancho! Draw!” Garry made his fingers into guns, and mimed shooting Gégé. By now the entire table was laughing, watching Gégé, the butt of the joke. He was gazing at Garry, his face unmoved. And then very quietly he began to make a noise that sounded like gas escaping in bursts from a balloon. He was laughing.

The way Garry teased Gégé was no different from what any pair of able-minded pals would get up to if one of them burped or smeared his face with chocolate. Garry had a connection with Gégé: he tied his bib, fed him his medicine and his dinner, joked, always sat next to him, bathed him and helped him to bed. Some assistants worried that making gentle fun of the habits of the residents was incorrect, but the residents enjoyed it most of all. They liked being the object of attention and of fun: they had no illusions about the way they looked, about what they couldn’t do. “I give it everything I have,” Garry said.

Jean-Claude, my dinner companion, was sixty-one. Sitting with him, I began to imagine this life for Walker after I was gone; I could imagine much worse ones. But the waiting list to get into L’Arche in Canada—where there were far fewer outposts than in France—was indeed twenty years long. I sketched a picture of Jean-Claude in my notebook; he saw me, so I showed it to him. He erupted in pleasure. It seemed I’d found a way into his trust and his company—into his world. It was easier to do this with the residents than I had imagined. There were no rules, no prescribed routes: you went with what was available, with the most human thing you could catch on to.
*

And this is the strangest thing: even in the three and half days I stayed at Trosly-Breuil, those broken men and women taught me things.

An example. There was an artisanal bakery in the village, a
boulangerie
some five minutes walk from where I was staying. I set out two mornings in a row to buy a baguette and have a coffee but I chickened out before going in. It is hard to describe how much mental agony this small failure caused me. My French was inept, they would laugh at me: the entire prospect intimidated me. I realized I was afraid of everything: afraid to take a shower, for fear of waking everyone up; afraid to come down to breakfast. (By nine in the morning the house was alive with noise—long high moans, train hoots,
ay
s and
ooh
s and clapping.)

But something about the unassuming nature of life in the
foyer
fixed that. My third morning at La Semence, I woke early and snatched a shower down the hall from my room. It was the first shower I’d had in three days—in a stall that took up a closet, the spray far from ideal—and it seemed like the height of luxury. I understood then how much a shower or a bath must mean to Jean-Claude and Gérard and Laurent and Gégé, and to Walker—a steady dose of pleasure, the sense, in their disorganized bodies, that for the moment they had a physical outline.

After the shower I dressed and walked into the village, through a small construction site: L’Arche was building two new
foyers
, transforming old buildings into new residences. (The French government had recently recodified housing requirements for the handicapped, and the retrofit had already become a serious financial challenge.) It was early spring—there were buds the size of peewee footballs on the trees. An owl was hooting. The best routine, Garry had explained, was to buy something to eat at the boulangerie, and then take it next door to the hotel for
un café
. There was only one thing to remember. “When you go in, say ‘
monsieurs
,
mesdames
’—that way at least they won’t think you’re some completely rude tourist.” I sat in the square, working up my nerve. Some teenagers were hanging out at the bus stop next to me, smoking. How did I get so frightened of everything? To take a shower, to buy bread in French, to step into a tiny country hotel—afraid to
be
. Retarded, incapable of language, afraid of what others would think.

Walker never worries about any of that.

I stepped into the boulangerie. One of L’Arche’s residents was there already, a young thin girl with a high, stalling voice, a stammer—as if her body would never be quite ready for her mind. She, however, managed to buy breakfast for her entire house. I leapt into the fray. Thanks to my French, I ended by buying twice as much bread as I could ever eat—the woman thought I wanted two baguettes, and I didn’t know how to dissuade her. But at least I had breakfast. I moved with my armful of bread down the street to the hotel. “
Bonjours
,
mesdames
,
messieurs
,” I sang as I crossed the threshold. Two large French gentlemen in leather jackets sat at the bar. They looked at me as if I were a visiting madman.

But now it was done, and it was nothing.

I understand how insubstantial this seems, how minor: man buys a coffee in French! But it was Gégé and JeanClaude, and my own Walker, who reminded me how to do that simplest thing. They reminded me not to be ashamed. That is never a small accomplishment. The essayist Wendell Berry even thought to write a poem about it:

You will be walking some night
in the comfortable dark of your yard
and suddenly a great light will shine
round about you, and behind you
will be a wall you never saw before
.
It will be clear to you suddenly
that you were about to escape
,
and that you are guilty: you misread
the complex instructions, you are not
a member, you lost your card
or never had one. And you will know
that they have been there all along
,
their eyes on your letters and books
,
their hands in your pockets
,
their ears wired to your bed
.
Though you have done nothing shameful
,
they will want you to be ashamed
.
They will want you to kneel and weep
and say you should have been like them
.
And once you say you are ashamed
,
reading the page they hold out to you
,
then such light as you have made
in your history will leave you
.
They will no longer need to pursue you
.
You will pursue them, begging forgiveness
.
They will not forgive you
.
There is no power against them
.
It is only candor that is aloof from them
,
only an inward clarity, unashamed
,
that they cannot reach. Be ready
.
When their light has picked you out
and their questions are asked, say to them:
“I am not ashamed.” A sure horizon
will come around you. The heron will begin his evening flightfrom the hilltop
.