The Boy in the Moon: A Father's Search for His Disabled Son

by Ian Brown

  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 Nobel Peace Prize, and had written dozens of pamphlets and books, including the international bestseller 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, unassuming 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 assigned 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 sacrée, 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 God, and within a few years had resigned his naval commission and enrolled as a student of philosophy and divinity at Paris’s L’Institut 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, Père Thomas Philippe. Shortly after Vanier’s arrival, Père 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 assistants 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, Père 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 institution 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 institutions for the handicapped just in Ontario; here in France it was the same type of thing. And I had visited institutions 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 naïveté 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 asset 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 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 wh
o 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-Hélène 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 assistant named François. As the word got around among the residents, two of them decided they wanted to see François. Another assistant led them into the visitation room where François’s body was lying in an open coffin. One of the men, Jean-Louis, asked the assistant if he might kiss François goodbye. The assistant said sure. And so Jean-Louis kissed dead François. “Oh shit!,” he exclaimed. “He’s cold!” Then he left. On his way out the assistant 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 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 int
o 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.