The Boy in the Moon: A Father's Search for His Disabled Son (22 page)

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 goodbye. 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.