The Boy In The Moon Part 7

We were making our way through various details of his life-Jimmy was a Toronto Maple Leafs fan, also considered a disability in Montreal-when Natalie arrived. She was a tall woman in her thirties with a three-hundred-watt smile, and a stylish scarf twirled around her neck in the style of Montrealers. Natalie was head of the home, its manager: she'd been visiting Madeleine, yet another resident of the house, who was in hospital with a broken leg.

Jimmy jumped up and fetched Natalie a chair, and held it for her. I must have been in homes where the return of someone at the end of the day was greeted with as much pleasure, but not often. "Madeleine says hi to everyone, especially to Jimmy," Natalie said, in French.

Isabelle, the young woman in the wheelchair, smiled broadly.

"Bad girl, Daff," Jimmy said, adding by way of explanation to me, "That's the first name of Daffy Duck."

Then we held hands, and said grace, and tucked into a delicious bouillabaisse, though some of the residents seemed to have special meals of their own.

There were three other guests-Alain, a psychologist from France who was working in the house for a few months; Katie, an a.s.sistant from Palestine; and Segolene, a nun from France who was working at the house while she considered her future.

"This has been my first home," Natalie said. "My first family." She had started out as a teacher in the public school system, but working at L'Arche had changed her. She'd been there now for eleven years. "The first time I ever worked with handicapped people, it was the first time I felt comfortable with myself," she said. I was surprised to hear her say that: she was an attractive, outgoing woman, articulate, confident. "I was shy. But with them, I was the leader. I came out of myself." There was a religious aspect to her work, she felt: it offered her a chance "to recognize G.o.d in my life. And G.o.d in the life of others. And to name it, too." But religion was a personal thing, nothing she pushed on anyone else. "The biggest challenge for me is to be with people who aren't aren't handicapped," she said. "It's more difficult for me to accept them. It's easier with Isabelle. In my head, when Isabelle or Jimmy or Madeleine make things strange, I think, oh, that's just because they have a handicap. But I can't use that excuse with normal people who don't have disabilities, when they make things strange." handicapped," she said. "It's more difficult for me to accept them. It's easier with Isabelle. In my head, when Isabelle or Jimmy or Madeleine make things strange, I think, oh, that's just because they have a handicap. But I can't use that excuse with normal people who don't have disabilities, when they make things strange."

"People make things strange? You mean this guy here?" Jean-Louis said, nodding at Jimmy.

"Some days yes, some days no." It was a joke. "You know, Jimmy, Jean-Louis knows Isabelle's mother."

"Isabel doesn't know that," Jimmy replied.

"No. But you you know that." know that."

"Yes."

"Mmm," Natalie said.

Isabelle, immobile at the end of the table, shone like a benign star, watching. She had only two ways of communicating: eyes rolled up, for yes, and down, for no; sometimes she did one when she meant the other, just to play a joke on people. It was one of the few jokes she could make, but she made it. She was pinned on her wheelchair like a lepidopterist's specimen, but like a b.u.t.terfly she was never ungraceful. Segolene, the visiting nun, told me it was looking after Isabelle, caring for her and dressing her and bathing her and keeping her company, that made her understand how much she loved her. An intent, dark-haired woman in her early thirties, Segolene was a sister in the Jerusalem Order in Paris. Working with Isabelle at L'Arche had made her wonder whether she wanted to return to her order, whether she could better use her time on earth. "Sometimes when I see Isabelle," she said, "I want to care for Isabelle, love Isabelle. And I want to do it for Isabelle, because it's almost counterproductive to do it for any other reason. But my faith says I should do it for Christ. And I don't want to love Isabelle behind the image of Christ." Isabelle had shaken Segolene's faith and what she thought was important. Segolene had left the safe confines of the church to join the outside world because of a young woman who couldn't move or speak.

"The first time I met someone with a disability," she went on, "was in a psychiatric hospital. And it was someone very fragile. It called up a tenderness in me that surprised me, that came out of me through that person. And I interpret that tenderness, which was so immense, as coming from something bigger than me. And that's what makes me stay here, that moment, that tenderness. Isabelle needs that. And that's why she's here. It was her who showed me the difference between we who choose and a person who can't choose. I think for me she is already a saint. Isabelle teaches us to be ourselves because Isabelle is just herself. And she's at peace with that."

As a newspaper reporter, I spend most of my life talking to people who have made a claim on my attention. Once in a while, a claim turns out to be justified, and at those moments a stillness surrounds the conversation, and I have no desire to be anywhere but there, where I am, in the company of the person I'm talking with. The remarkable thing about that house in Verdun was that the calm descended upon me again and again in a single evening. For a long time I didn't want to leave.

But eventually we had to, and Jean-Louis and I said goodbye. It was snowing again outside in the streets of Verdun, wiping out the day's shovelling. I couldn't forget what Segolene had said. I kept thinking: could Walker be someone's Isabelle? Could he be mine? Walker was himself; he had no choice. If I could let him be the boy he was, and let go of the boy he might have been-maybe I could do the same.

Rogue thoughts at night in the snow.

Six weeks later, in Cuise-la-Motte, a village ninety kilometres northeast of Paris, I saw an even more precise version of a possible future for Walker.

Cuise-la-Motte is one of four villages with L'Arche communities that form a tight knot in Picardie-Pierrefonds, Trosly-Breuil, and Compiegne, which is large enough to have a university, being the other three. A 36,000-acre forest-one of France's famous hunting preserves, a former forest of the king-sits in their midst. Joan of Arc hid in these woods before her capture in Compiegne in 1430. The same forest was where Marshal Ferdinand Foch signed an armistice with the Germans on behalf of the Allies on November 11, 1918, and where, twenty-two years later, Adolf Hitler forced France formally to surrender to the n.a.z.is. There are two grand chateaux in the region, one of which is said to be the inspiration for the castle in Walt Disney's Sleeping Beauty Sleeping Beauty. But no tourist plaques mention the L'Arche communities, though the people who live in them walk the streets like ordinary citizens.

The most critically disabled residents, both intellectually and physically, lived in a maison d'acceuil specialise maison d'acceuil specialise called La Forestiere, in Trosly-Breuil. La s.e.m.e.nce-the seed, in French-where I was planted, was home to people mostly incapable of speech, but mobile, after a fashion; conscious, and capable of registering their consciousness, but incapable of doing so alone. Walker would have fit in here, at the bottom end of the range. I was staying in the guest room, the sole person in a room that accommodated four. Outside my window a magnolia tree was flowering. Rosemary and lavender bushes were in bloom. It was April. called La Forestiere, in Trosly-Breuil. La s.e.m.e.nce-the seed, in French-where I was planted, was home to people mostly incapable of speech, but mobile, after a fashion; conscious, and capable of registering their consciousness, but incapable of doing so alone. Walker would have fit in here, at the bottom end of the range. I was staying in the guest room, the sole person in a room that accommodated four. Outside my window a magnolia tree was flowering. Rosemary and lavender bushes were in bloom. It was April.

My flight had arrived that morning in Paris, and I'd arrived in Cuise-la-Motte just before lunch. My plan was to stay a few days, see how L'Arche worked, talk to Jean Vanier. He was one of the world's foremost thinkers on the subject of disability, and I wanted to know what he thought would comprise a satisfying, decent, just life for Walker. I had read some of Vanier's books, and found them radical. Vanier believed the disabled deserved a place of their own, that they often wanted to live apart from their families and parents if they could find a sufficiently supportive environment. That was an idea I thought I could get behind. He also insisted that the disabled were capable of teaching the able-bodied more than the able-bodied could ever teach them. If Vanier was right, I didn't have to feel so bad about letting Walker live his life at least to some degree on his own. In some way I was there to find out if I was letting my son down. I unpacked my bags and sat down at the table in my room's small kitchenette to look over the questions I planned to ask Vanier that afternoon. I had a page or two of notes prepared when there was a knock on the door. I opened it to a tall man wearing a beard and a red sweater. He immediately offered me some water. I said yes, invited him in, and offered him a seat at the kitchenette table.

He was sixty-four years old, but he looked fifty. His name was Garry Webb and while he wasn't disabled, he too lived at Semance. Webb was L'Arche's director of special projects: he'd just returned from taking fifteen L'Arche residents on a trip to Portugal. He'd grown up in Vancouver, but left home at eighteen. "It wasn't my culture," he said matter-of-factly. I asked him how he came to work at L'Arche, but that didn't work, because he refused to cla.s.sify what he did as work. "It's living. Being. Working is only part of it. Everyone who comes here is transformed by it. Relationship is our priority. And then we tell people about it just by being who we are." All of which was interesting, free, spirited, and made me extremely nervous. But that was often the way conversations with people at L'Arche began. They didn't seem to suffer from the self-consciousness the rest of us do: disabled or not, they launched forthwith into the act of "relationship" with whomever they met, whenever they met them. I found their enthusiasm alarming. Were they high? Had they been smoking kindness? What the h.e.l.l were they up to, anyway! I admired their openness, but being a city boy, had no desire to emulate it; I appreciated their generosity, but as a product of twentieth-century capitalism, doubted its sincerity. If Walker ever lived in such a place, would he be surrounded by people who cared for him for his own sake or by people who cared for him because they were in a cult? I didn't want Walker in a cult.

Webb had trained as a Jesuit and spent seven years in a Trappist monastery when he took a leave of absence to rea.s.sess his life. He had a lot of options. He'd studied philosophy and theology and psychology at university; his parents had been artists, and Webb was himself a part-time sculptor and sometime actor. He had strict requirements for his new path. It had to unfold in a new community; it had to be responsible work, with the poor or their equivalent; it had to be non-exclusive, nothing that shut out the rest of life (he didn't want to be locked away in a monastery again); it had to be a long-term commitment; it had to be holistic; and, most importantly, had to occur in a community that respected "the spirituality of each person." The first time he visited L'Arche, "I asked to stay for three days. But then I asked to stay for three weeks, then three months, then for a year."

I was about to ask if living at L'Arche ever got boring, but at that moment Webb explained he was only popping in to say h.e.l.lo on his way to the nearby village of Trosly-Breuil, to visit Jean Vanier at his home. They met every other week.

"What do you talk about?"

"Us," Webb said.

"Not the business of L'Arche?"

"Oh G.o.d, no. Us. My stuff. Why I'm still s.h.i.tting my pants, figuratively speaking, in my dealings with the world. Why he's still running around like a rooster with his head cut off."

As he got up to leave, I confessed I was a little nervous at the prospect of talking to people who couldn't talk. Webb scoffed and waved his hand. "I think the core members of L'Arche are our teachers," he said. "And if you communicate with them, you'll be okay. Lunch is at twelve-thirty." Then he left.

An hour later, in the dining room, I met the people I was to live with for the next three days.

Gerard was in his fifties. He could speak, after a fashion, but made whinnying noises as he did. He liked to tell stories, and was known to go into town for a beer. Laurent (also known as Lorenzo, because he was born in Italy) was trim and well dressed; he made a soft moaning noise as he ate, and liked to walk into a room and then stand stock-still for long stretches. Lydie, a young woman from the south of France who was Laurent's a.s.sistant, said, "Laurent loves trains. He has all sorts of books about trains."

"Train!" Laurent said, in French. It was the only word I ever heard him speak. Laurent said, in French. It was the only word I ever heard him speak.

"C'est ca," Lydie replied. Lydie replied.

Several of the residents wore large neckerchiefs, bib fashion, in preparation for lunch. Francine was in a wheelchair; thanks to cerebral palsy she never spoke, though she could make noises, and was keenly interested in those around her. Another resident, Jean-Claude, could power himself in a wheelchair, liked cognac, could hear what people said, could not respond, and carried his favourite object, a stuffed racc.o.o.n, wherever he went. He was my age. Sabina appeared to have a severe form of Down syndrome, and spent all her time silently in her wheelchair.

The person who captured my interest most was a small, stooped, watchful man named Gege. He was forty-six years old and he reminded me of Walker. The similarity smacked me like a blow: I could see Gege's ceaseless curiosity, and his permanent loneliness. He never spoke, but observed the action around him intently and slyly, with his head tilted. Singing made him smile. He made popping noises with his mouth, and walked in a crabbed forward crouch, half bent over. He had a habit of staring at his hands as if they belonged to someone else, the way Walker did.

No one at L'Arche talked about integration, the way staff sometimes do at conventional homes for the disabled: this community existed for the disabled and made no pretense that residents eventually would be part of the "normal" community. People like me were the outsiders here. There was a routine, a structure, a community of individuals, and their lives counted for what they were, no added value required. The table was set, grace was sung. Red leather pill-wallets were set out carefully at the head of each resident's place setting, alongside any required digestive powders-a small neat pharmacy of remedies next to each water gla.s.s. Some of the residents could eat on their own, but just as many needed their food spooned into their mouths. As we ate, the a.s.sistants talked to their wards, and the wards grunted or laughed or moaned or peeped in reply. Gerard was the only resident at the table who could initiate what someone on the outside would recognize as conversation, but that didn't stop everyone from interacting. It was a form of speaking, but you had to let it lead you.

After lunch, the residents who worked in L'Arche's workshops making trinkets and jewellery returned to their labours; the others went for a walk. It was a community for the disabled, there was no question of that, but because the disabled were considered, and considered themselves, equals, none of it felt like a "special" arrangement. This was their world, not ours; these were their standards, not ours. The pace of life was slower, life itself was simpler; there were delays and problems, but no one took them seriously. It was a pleasant place to be, and conveyed no sense that life ought to be otherwise.

A couple of months after I visited L'Arche, at a party in Toronto, a friend scoffed at Jean Vanier's saintliness. "It's just so hard to accept that a guy with his intelligence and his opportunities would want to live with those people," my friend said. "But maybe he just always wanted to make sure he was the smartest guy in the room." Which he conceded was a terrible joke almost as quickly as Vanier would have laughed at it.

But there was something to the joke. Vanier had an imposing reputation, the result of a life dedicated to accomplishment. He had founded L'Arche. He was a perennial candidate for the n.o.bel Peace Prize, and had written dozens of pamphlets and books, including the international bestseller Becoming Human Becoming Human.

But in person, Vanier was anything but intimidating. His house-the house he lives in when he isn't travelling the world for L'Arche-was a tiny stone cottage that backed onto the main street of Trosly-Breuil. Inside, in a cramped study off a modest kitchen, I found a tall, shy, una.s.suming white-haired man in a pale blue sweater.

Jean Vanier was born in Geneva, Switzerland, on September 10, 1929, while his father, Georges Philias Vanier, a retired general in the Canadian army, was stationed there on a diplomatic mission. Vanier attended school in England, but at the outset of the Second World War went to live, for reasons of safety like many other English children, with his brothers in Canada.

Late in 1941, he approached his father for a meeting. As his father was by then the nineteenth governor general of Canada, this required making an appointment. Jean wanted to join the British Navy, by way of the Royal Naval College in England. He had to cross the dangerous waters of the Atlantic, an idea his mother strongly opposed. But his father held a different view. "If that is what you really want to do," Georges Vanier said to his son, "then go. I trust you." Vanier later remembered the conversation as a formative moment of his life.

He was too young to see active service, but did witness the liberation of Paris, and in the years that followed helped process the return of survivors from the concentration camps at Dachau and elsewhere. By 1950 he was a.s.signed to Canada's largest aircraft carrier.

At sea, Vanier began to wonder if he really wanted to be in the navy. He had begun to pray, for starters. He later wrote in Toute personne est une histoire sacree Toute personne est une histoire sacree, his account of his spiritual call to arms, that he had begun to feel "called to work in a different way for peace and freedom." He was more attentive to reciting the Divine Office than he was to night watch. He felt he was being called to G.o.d, and within a few years had resigned his naval commission and enrolled as a student of philosophy and divinity at Paris's L'Inst.i.tut Catholique. He also joined L'Eau Vive, a small community of students devoted to prayer and metaphysics under the direction of a French Dominican priest, Pere Thomas Philippe. Shortly after Vanier's arrival, Pere Thomas fell ill. Vanier was asked to run the community, which he did for six years.

"I suppose I had been hopping around," Vanier told me that afternoon over a cup of tea. "I'd been a naval officer, I'd left the navy, I'd come to a community near Paris. I was searching. I didn't know quite what to do. Later I got a letter from St. Michael's College in Toronto: will you come and teach? And it was interesting." By 1963, at the age of thirty-four, Vanier had defended his doctoral dissertation at the University of Toronto (Happiness: Principles and Goals of Aristotelian Morality) and was a popular lecturer with a scholarly interest in the ethics of friendship. "But I knew that teaching wasn't my thing. There was something in me that wanted a commitment to people, and not ideas." He spent a lot of time visiting the edges of society-notably prisons near Ottawa, where he took to praying with the inmates, guards, wardens and in-house psychologists alike. "After a while, no one knew [during the prayer sessions] who was a prisoner or who was a guardian," he later wrote. It was his first experience of non-hierarchical life-an early model for what L'Arche would later become, with its residents and a.s.sistants living side by side, as equals. Raised as he had been in the protocol-encrusted diplomatic community and in military college, casteless society was a revelation to him.

During the summer of 1963, after the school year finished in Toronto, Vanier visited his old spiritual mentor, Pere Thomas. Thomas had retired from teaching following a disagreement with the Vatican, and was by then serving as chaplain at Le Val Fleuri, a small inst.i.tution for men with developmental disabilities in the tiny village of Trosly-Brueil. "I was a bit scared," Vanier said of his first visit, "because-well, how do you share with people who don't speak, or speak badly?"

But his encounters with the intellectually frail men of Trosly were the opposite of frightening. "What touched me was that everyone, in one way or another, said, 'Do you love me? And, will you be my friend?' I found them so different from my students at the university. My students wanted my head, and then to leave, to get a position, get money, found a family. But here was something else. I think their cry-'Will you be my friend?'-triggered off things within me. I think I was searching for a place of commitment.

"These were the years of Martin Luther King," Vanier explained. "He wanted to liberate those who were oppressed. I think my impression of people with disabilities was that they were among the most oppressed people of this world. I suppose that somewhere at the heart of the beginning of L'Arche was a desire for liberation, to liberate them.

"It seemed obvious. That was the period in Canada where there were twenty inst.i.tutions for the handicapped just in Ontario; here in France it was the same type of thing. And I had visited inst.i.tutions where there were a thousand people with disabilities all cluttered together. And I thought: what is the meaning of this? And so my sense was just, why not get a house? And why not welcome two people? And see what happens? In a way, I'm quite naive. I think I like risk. And if you put naivete and risk together, then you start L'Arche."*

A small house was available in the centre of Trosly-Breuil. Vanier bought it. The house was so primitive it had no indoor toilet. On August 6, 1964, he moved in with three intellectually disabled men (one of whom quickly proved beyond his capabilities and moved out again). Neither of the remaining men, Raphael and Phillippe, could speak. Vanier's only other a.s.set was an unreliable Renault, in which he and his companions roamed the countryside.

"I can say that as soon as I began, I think I became a child. I could laugh, we could have fun. We'd sit around the table and fool around. I had been quite serious up to that time. As a naval officer you're quite serious. You know how to command people. Then when I started teaching, I was quite serious: you have to give the impression that you know something when you teach.

"But here it was something else. We could fool around. Because the language of people with disabilities is the language of fun. But you know that with Walker. Don't be too serious. Celebrate life, have fun." A profound three-way ritual of acceptance developed: Vanier's acceptance of his two new disabled companions, their acceptance of him, and perhaps most significant of all, Vanier's acceptance of himself in his new, less ambitious, countercultural role.

He called the house L'Arche, after the French word for ark, as in Noah's ark. To his surprise, the venture attracted attention over the ensuing years, and eventually donations and public funding that allowed it to expand.

"In the beginning Jean was still in the very traditional thing of doing good for the poor," Jean-Louis Munn had told me when we met. "But then it switched: he realized he he was benefiting. After that Jean wanted to be a voice for people who had no voice. He quickly discovered that the simple life, living with Raphael and Phillippe, was satisfying." Gradually, lured by Vanier and word of mouth, young people from around the world began to show up at L'Arche to do a year or two or more of service. (Jean-Louis Munn and Garry Webb were two of them, as were many of the people who still work for the organization thirty years later.) By 1971, as L'Arche expanded internationally, demand for places was overwhelming, especially from parents who could no longer look after their adult children. L'Arche couldn't build homes and communities to serve them all, but that year, with the help of a colleague, Marie-Helene Mathieu, Vanier created Faith and Light, a net of extended support groups for people who have no recourse to a full-service L'Arche residence. Today there are nearly fifteen hundred Faith and Light networks in seventy-eight countries that cater as much to the parents of the disabled as to the disabled themselves-an evolution with which Vanier did not feel comfortable at first. "At the beginning my concern was not with them: it took me a long time to really listen to parents," he said, leaning back in his seat in his study. "Because most of the people we brought in to begin with, their parents were either dead or had abandoned their children young. And so there was inside of me to begin with a little bit of upsetness with parents." I understood that feeling: I had a little bit of upsetness with myself for letting Walker live somewhere else, however necessary it was. But as Vanier met more parents who had not abandoned their children but who never-theless couldn't care for them, his strict views began to moderate. He was struck more and more by the immense lake of pain and guilt in which many parents of disabled children tried to stay afloat. was benefiting. After that Jean wanted to be a voice for people who had no voice. He quickly discovered that the simple life, living with Raphael and Phillippe, was satisfying." Gradually, lured by Vanier and word of mouth, young people from around the world began to show up at L'Arche to do a year or two or more of service. (Jean-Louis Munn and Garry Webb were two of them, as were many of the people who still work for the organization thirty years later.) By 1971, as L'Arche expanded internationally, demand for places was overwhelming, especially from parents who could no longer look after their adult children. L'Arche couldn't build homes and communities to serve them all, but that year, with the help of a colleague, Marie-Helene Mathieu, Vanier created Faith and Light, a net of extended support groups for people who have no recourse to a full-service L'Arche residence. Today there are nearly fifteen hundred Faith and Light networks in seventy-eight countries that cater as much to the parents of the disabled as to the disabled themselves-an evolution with which Vanier did not feel comfortable at first. "At the beginning my concern was not with them: it took me a long time to really listen to parents," he said, leaning back in his seat in his study. "Because most of the people we brought in to begin with, their parents were either dead or had abandoned their children young. And so there was inside of me to begin with a little bit of upsetness with parents." I understood that feeling: I had a little bit of upsetness with myself for letting Walker live somewhere else, however necessary it was. But as Vanier met more parents who had not abandoned their children but who never-theless couldn't care for them, his strict views began to moderate. He was struck more and more by the immense lake of pain and guilt in which many parents of disabled children tried to stay afloat.

"The guilt. The guilt. The parents of the disabled were as a group the most pained people, because many of them feel guilty. They ask that terrible question, why has it happened to me? You find in the Knights chapter of St. John, when Jesus and his disciples meet a man born blind. And their immediate question is, why? Whose fault is it? Did he commit a sin, or did the parents commit a sin? Why do you have a son like that and why does someone else not have a son like that? Wracking your brains about that sort of stuff-we can spend a lot of time asking the wrong questions. The right question is, how can I help my son, to be happier? The wrong question is, is it my fault?"

"But the social disapproval is still intense," I said. "People don't like to be reminded of the disabled. Why is that?"

"I think people are frightened at seeing people with disability," Vanier replied. "It might say to them, one day, you might have an accident and you will be disabled. You know, we are frightened of death. And the disabled are a sign of death." He then embarked upon a story about the first person who ever died in a L'Arche home in Trosly, an a.s.sistant named Francois. As the word got around among the residents, two of them decided they wanted to see Francois. Another a.s.sistant led them into the visitation room where Francois's body was lying in an open coffin. One of the men, Jean-Louis, asked the a.s.sistant if he might kiss Francois goodbye. The a.s.sistant said sure. And so Jean-Louis kissed dead Francois. "Oh s.h.i.t!," he exclaimed. "He's cold!" Then he left. On his way out the a.s.sistant heard Jean-Louis say, "Everyone's going to be so surprised I kissed a dead person!"

Vanier stopped speaking, looked at me and shrugged his shoulders. "What is happening?" he said then. To my relief I wasn't supposed to have an answer: Vanier was going to tell me. "My belief," he said, "is that he's kissing his own handicap. And so accepting people with disabilities is some way of accepting one's own death."

I suddenly found myself telling Vanier the story of Walker's bath-how when I felt out of sorts, when nothing helped, I could feel better if I gave Walker a bath, because it made him feel better too.

"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 compet.i.tion 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, n.o.body'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 ma.s.sacre 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 Legion 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 embarra.s.sing 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. I'm always surprised by the range of people I meet who have experienced the energy of the handicapped, however difficult and even embarra.s.sing 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 gla.s.s 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 st.i.tched onto a smaller green triangle, which in turn had been sewn onto the larger orange one. The entire contraption was ostensibly a ma.s.sive 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 s.e.m.e.nce. 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 s.e.m.e.nce took dinner seriously. There were flowers on the table. The a.s.sistants, 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.

Gege'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 a.s.sistants 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; Gege 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-Gege ended up with a chocolate moustache. Garry immediately started in. "Ah, you have a moustache! h.e.l.lo, 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 Gege. By now the entire table was laughing, watching Gege, the b.u.t.t 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 Gege 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 Gege: 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 a.s.sistants 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 artisa.n.a.l bakery in the village, a boulangerie 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, 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 ays and ooh oohs and clapping.) But something about the una.s.suming nature of life in the foyer foyer fixed that. My third morning at La s.e.m.e.nce, I woke early and s.n.a.t.c.hed 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 Gerard and Laurent and Gege, and to Walker-a steady dose of pleasure, the sense, in their disorganized bodies, that for the moment they had a physical outline. fixed that. My third morning at La s.e.m.e.nce, I woke early and s.n.a.t.c.hed 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 Gerard and Laurent and Gege, and to Walker-a steady dose of pleasure, the sense, in their disorganized bodies, that for the moment they had a physical outline.