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

by Ian Brown

  Just as suddenly, the service was over. People began pulling on their hats, an astonishing array of classic Canadian winter headgear, caps with vast bills and peaks and ear coverings like mud flaps and hoods that dwarfed their heads.

  Ricky stepped up to me with his arm linked in Richard’s; Richard was making a farting noise with his lips. “This is Richard,” Ricky said to me. “He was in my foyer. We used to sleep together.” He meant in the same room in their L’Arche residence. L’Arche calls its houses foyers, after the French word for “hearth.”

  It was like being in a novel by Balzac or even Hugo, with outlandish, unforgettable characters everywhere. Surrounded for the first time in my life by intellectually disabled adults I had only just met, I suddenly realized I didn’t feel nervous.

  My anxieties resurfaced as Jean-Louis Munn led me through the streets of Verdun, in south Montreal: we had been invited to dinner at one of the five homes, L’Arche maintains for the disabled in the area. A huge blizzard had engulfed the city the day before, and the evening streets were full of people digging out their driveways. I had no idea where we were going, what to expect, what was expected of me. Eventually we pulled up in front of a tidy two-storey house. Jimmy Davidson greeted us at the door—a stocky guy with red hair and Down syndrome. He had his pajamas on—blue flannel Power Rangers bottoms and a matching T-shirt top, and slippers. “I’m so totally relaxed,” Jimmy said, and then he shook my hand. He was forty-five years old.

  There was a picture of the Last Supper on the wall, the sort of icon that always gets my guard up, as well as a bulletin board, yellow cupboards, plants—it was a lived-in place. In addition to the house’s three assistants (caregivers in L’Arche homes are always called assistants) and Jimmy, four other residents (as the disabled are known in L’Arche homes) sat down with us for dinner at the pine kitchen table: Marc, a middle-aged man who smiled a lot but said nothing; Sylvie, who also never spoke; Jadwega, a woman in her sixties who had cooked the meal and who could remember numbers, but not many faces; and Isabelle, a calm young woman in a wheelchair with what was clearly a form of cerebral palsy. Isabelle sat at the end of the table. She couldn’t move her arms or legs or change the angle of her head, or speak—but she followed everything, including the conversations, with her eyes, and often smiled benignly on the proceedings.

  A tide of awkwardness rose around me, but I didn’t have much time to think about it, because Jimmy, who was sitting beside me—I had the place of honour at the head of the table—was peppering me with questions about which Power Rangers I liked and did not like, and I was peppering him with questions in return. I asked him how long he had lived in the house.

  “Two years in the house,” he said.

  “Where did you live before?”

  Jimmy couldn’t remember. “With, um,” he said. And then: “With my mother.” His mother came to visit every week. He got serious when he talked about her.

  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 assistant from Palestine; and Segolène, 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 God in my life. And God 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 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 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 butterfly she was never ungraceful. Segolène, 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, Segolène 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 Segolène’s faith and what she thought was important. Segolène 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 g
oodbye. It was snowing again outside in the streets of Verdun, wiping out the day’s shovelling. I couldn’t forget what Segolène 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 Compiègne, 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 Compiègne 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 Nazis. There are two grand châteaux in the region, one of which is said to be the inspiration for the castle in Walt Disney’s 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 spécialisé called La Forestière, in Trosly-Breuil. La Semence—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 classify 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 hell 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 reassess 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 hello 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 God, no. Us. My stuff. Why I’m still shitting 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.

  Gérard 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 assistant, 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.

  “C’est ça,” 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 raccoon, 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 Gégé. He was forty-six years old and he reminded me of Walker. The similarity smacked me like a blow: I could see Gégé’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 glass. Some of the residents could eat on their own, but just as many needed their food spooned into their mouths. As we ate, the assistants 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.