The Boy in the Moon: A Father's Search for His Disabled Son (26 page)

Le Cardinal is professor emeritus of communication and information studies at Compiègne University of Technology, and the author of several respected management books in France. But he began his professional life as a computer engineer in artificial intelligence, designing decision-making robot programs for the oil exploration industry. Every Wednesday, he accompanied his wife to lunch at one of the L’Arche
foyers
in Compiègne where she worked.

“I was incompetent as an assistant,” Le Cardinal told me one night over dinner at his house, “but I was a good listener.” The apparent effortlessness of the L’Arche community impressed Le Cardinal—the way it satisfied the ambitions of a diverse group of people with a smorgasbord of capabilities. Le Cardinal believes that everything he has since accomplished as a writer and systems analyst fetches back to “things I learned at L’Arche.”

Predictably for someone whose job it is to break down a complex process into its component parts and then train a machine to replicate those actions, Le Cardinal began to analyze L’Arche. He made a list of all the “shareholders” in a
foyer
—the residents, assistants, managers and parents who had an influence on quality of life and a stake in the outcome. He then sorted their needs and inputs into distinct points of view and subdivided them by the intersections between those points of view. He overlaid that schematic understanding with what he could discern of everyone’s hopes, fears, expectations and any temptations they had to subvert the system. Then he studied his findings.

Le Cardinal’s conclusion surprised him. L’Arche produced a collective intelligence that was greater than the sum of its parts; interaction between the able and the disabled produced points of view that were more sophisticated than either group reported on its own. Looking back on my own brief stay at La Semence, I could see this dynamic had been in play: Gégé seemed more or less insensate until I discovered him laughing at Garry’s performances, and his response clearly thrilled Garry, and drove him to try harder to reach the residents. When I encountered Francine in her wheelchair and she grabbed my arm and pulled my face close to hers, I responded with an embrace and a kiss, and beheld that Francine liked men. I had assumed Francine had no needs; I was shown otherwise. I could satisfy her with simple affection. Francine discovered she could have comfort when she needed it, if she made that clear. Only by encountering each other as equals in the moment did we make these discoveries.

“What I found fascinating was the paradigm of complexity,” Le Cardinal told me. “I’m sure that mind, energizing mind, is part of the complexity—it’s a new, unplanned quality that comes out of the complexity. The intelligence of the system is not in the neurons. It’s in the complexity itself, in the process by which people interact. Similarly, a community at L’Arche produces new qualities that are not in the independent parts, such as reciprocity and total equality. And one of those new qualities is this total respect between the most brilliant person and the most handicapped person.”

“Can you really have complexity in a handicapped mind?” I asked. “It seems counterintuitive.”

“You can, if you have a community,” Le Cardinal replied. He picked up a piece of flatbread, and some butter on a knife. “If you want to spread butter, it breaks.” He demonstrated, and the flatbread broke on cue. “But if you use two crackers to reinforce each other, they don’t. I discovered the difference between weakness and fragility. The contrary of weakness is power. The contrary of fragility is strength. Weakness is not the issue with the handicapped—they are anything but weak. Fragility is another matter, but one that can be solved by co-operation.”

Le Cardinal realized he had a radical new theory of management on his hands—one that has since become the basis of several popular books. In
The Dynamics of Confidence
, Le Cardinal applies the lessons he learned at the feet of the disabled to theorize about why some people are more confident than others and about how confidence can be created. The book has helped establish the scientific study of confidence. One of leaders of the new discipline is Daniel Seligman, a California psychologist who first came to prominence with his studies of learned helplessness in the 1970s.

“This was absolutely new, what we were learning,” Le Cardinal said. “The handicapped are always saying: ‘Can I trust you as much as I need to?’ It’s their central question. Once the trust question is solved, it becomes easier to enter the world of the handicapped and find out what they can learn and accomplish.”

Le Cardinal has since applied his L’Arche-rooted discoveries about assessing risk and creating trust in a group—his notion that confidence and learning spring from a mutual admission of mutual need—to other problems. For six years he worked in Belarus, where he was asked to find the fastest and most effective way to teach women near Chernobyl not to serve radioactive milk to their families. It was harder than it sounds: how do you stop people from imbibing an essential food—especially one they produce themselves at no cost on their own farms—because of a disaster that happened thirty years ago? The Belarusian government had tried banning the drinking of milk, but that hadn’t worked.

Beginning with a single woman, Le Cardinal set out to create a “culture of care” that would develop its own “self-generated awareness of risk.” He then employed L’Arche-based confidence-building techniques to extend the influence of his chosen woman over other mothers in the community. When Le Cardinal began the project, in a town of 1,200 people and 350 children, a child consuming a container of milk averaged 2,000 bequerels of radioactive contamination. (A level of 100 bequerels is considered acceptable, or at least non-damaging.) Six years later, Le Cardinal and his team had reduced the average intake to 50 bequerels per child. The program has since been expanded to protect more than 600,000 people.

But Le Cardinal hadn’t invited me to dinner to praise himself. He wanted to tell me I could use the same principles on Walker. “For Walker, for someone with his profound intellectual disability, the difficulty is to find the ‘proximal zone of learning.’ In some zones, we are comfortable learning new things. Then there’s a nearby zone where you can learn, with effort. And there is another zone, where you can’t learn. It’s hard to find the proximal zone between the second and third areas, but if you ask the right question, it can be identified.” If I could find that zone, maybe I could teach Walker some crucial skills.

The trick, Le Cardinal said, was to find something Walker cared about—say, going outside, which he loves more than anything—and then give him the tools to convey that desire. We needed a sign, a symbol. “With the identification of a precise symbol, even if it conveys the simplest concept, it is possible for the handicapped to express themselves on matters that are important to them. So suddenly with one word or sign, you and Walker can be synchronized—heart to heart, hand to hand. Whereas perhaps with a thousand words, he can’t be synchronized, because there are too many choices.”

Walker already trusted me, so we had met the first requirement. The next step was to find his zone of proximal learning by teaching him to indicate yes or no—something he can’t yet do.

Learning “no” might be easiest for him, I explained. “He used to shake his head, and still turns his face away. But yes”—the nod to agreement, to be included—“still eludes him.”

“You must find it,” Le Cardinal said, and his tone was insistent. “It is difficult, but it is always possible. It could take as long as a year, but it’s essential. It’s fundamental. And it must be a strong sign that everyone can read, not just you or your wife. Because it’s his first chance to express his preference. Not even, do you want apple or orange? Just: do you want orange? No. Apple? Yes. It’s liberty. It’s the first step for him to be free. The first step for him is to choose: that’s the key for him to meet his intelligence, even if his intelligence is very small. It is the door to his future, essential.”

Le Cardinal has conducted experiments in which he asked handicapped boys who couldn’t speak what piece of technology they wanted most. The most common answer, by overwhelming majority? Not a computer, not an iPod. The gizmo the boys wanted was an electric wheelchair. Why? “‘Because then I can go near people I love and away from people I dislike,’” Le Cardinal reported them saying. Trust breeds desire; desire breeds discernment; discernment breeds dignity. Because if Walker chooses something, he can assume some responsibility for himself, can try to control a slice of his fate. He can be more human. It didn’t even have to be much of a choice: it just had to look and feel like one.

“You have to give Walker his liberty,” Le Cardinal said. “And when he learns the sign, if you will let me know, I will be very pleased. Very pleased. I will give you my e-mail address so you can let me know.”

I’ve been trying to teach Walker the sign for yes since that day, more than a year ago. Sometimes I even think he’s getting there.

I will remember, for a long time, sitting and talking in Gilles Le Cardinal’s house in Compiègne, eating the simple but delicious cassoulet his wife Dominique had kindly prepared for us. It was as if we were sitting in a secret clubhouse, passing around a treasure map that so far no one else knew about. His ideas were memorable enough on their own. That they had been inspired by people like Walker made them unforgettable, even “revolutionary. Because it is about how our weaknesses can be fecund and fruitful. Especially for handicapped people, but also for others. And that was something I discovered from handicapped people, when they said you do not have to hide what is imperfect in you.

“And this changed me,” Le Cardinal said, after a pause. “Because in a competitive world, you must hide what is weak or wrong. Someone will try to beat you when they discover a weakness, try to take advantage of the weakness. When two players on different teams play, they try to defeat each other. And that is exactly where the handicapped disagree. They respect our mutual weakness.” One is revealed by one’s need. There is no need for posturing.

Another of Le Cardinal’s heroes, Jacques de Bourbon-Busset, the French diplomat and president of the French Academy who renounced politics to become a writer, said it famously: “The enemy of love is self-esteem.” De Bourbon-Busset was a friend of Charles de Gaulle, as was Georges Vanier, Jean Vanier’s father. Both men knew de Gaulle’s handicapped daughter, Anne, who was born with Down syndrome. De Gaulle was a famously undemonstrative man, except to Anne. She died in 1948 at the age of twenty. After her funeral, the president comforted his wife as they walked away from Anne’s grave by saying, “
Maintenant, elle est comme les autres
”—now she is like everyone else. De Gaulle carried a picture of Anne wherever he went after that: he claimed the bullet fired at him in an unsuccessful assassination attempt in 1962 was stopped by the frame of the photograph, which that day happened to be propped up on the back window shelf of his car. Twenty-two years later, de Gaulle was buried beside his daughter, a detail I find crushingly sad.

Though
sad
is not the right word, or not enough of a word. Still-making, at the very least: the thought of his long unrequited desire to reach her, finally and unavoidably granted; the gaunt, spare shape of our human loneliness and longing clarified by his simplified child.

All of this was passed on to me, via Gilles Le Cardinal, via Jean Vanier, from the source of Walker.

So you can perhaps forgive me for thinking, some days, that Walker has a purpose in our evolutionary project, that he is something more than an unsuccessful attempt at mutation and variation. For thinking, probably vainly, that if his example is noted and copied and “selected,” he might be one (very small) step towards the
evolution
of a more varied and resilient ethical sense in a few members of the human species. The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest.

*
There were even couples at L’Arche, not just among the young assistants, who often went dancing in town after a long day’s work, but also among the residents. Some were even married. In Holland, some communities for the disabled are particularly progressive: professional sexual masseuses are hired by homes on a regular basis. That is not the practice at L’Arche or in France. “Here,” Garry said, “if you’re physically handicapped, your physical and sexual needs don’t exist. Instead you’re an angel.” He wanted the French system to be more lenient. I admit I was shocked at first, but then, I often am: the first time someone suggested to me that Walker might one day marry, I reeled. But why shouldn’t he marry? His condition deprives him of so many pleasures already; why should he be deprived of the pleasures of a steady companion, if there is a steady companion who wants to share a life with him?

thirteen

From my notebook, December 8, 1999, when Walker was three:

Staying at the Yacht Club Hotel, a Disney resort, here in Disneyville, Disneyworld, the Disney Universe. Care of Johanna’s stepfather, Jake, and her mother, Joanne. Her sister and brother and their spouses and children are here as well
.

So many, many strange, strange things. First, Walker, who is in agony, whacking his head constantly, crying, snotting, freaking—in pain, cause unknown. I suspect toothache or overstimulation. My fear—unsubstantiated, but convincing anyway—is that he hurts himself intentionally, that he knows there’s something wrong with him
.

Then there’s Jake, who is dying, slowly, from bone cancer—impossibly sad, but no one mentions it. He has a scooter to ride around on; the kids join him. Sometimes after a few drinks we all do
.

Then of course there is Disneyworld itself. The great American oasis of sameness. I wonder how archaeologists will interpret Disneyworld thousands of years from now—as a religious shrine, I imagine, and quite accurately. Disney tunes leak out of the bushes here, and make me jump. The employees are instructed to be nice to guests, to inquire first as to their well-being, no matter what: even the guys repairing ductwork in the hallways of the hotel, having covered endless runways of carpet with RugWrap, an impermeable dirt-stopping Saran Wrap, halt all work and say “Hi there! How you doing today?” as Walker and I cruise by on a hall stroll. It makes me long for some scrofulous shitsack to tell me to drop dead, just to bring me back to reality
.

I am in a Bad Mood. I have been in a Bad Mood since I got here. Walker keeps reminding me that life does not have a theme
.

Except at Disneyworld, where if you’re going to do something, you have to do it within a theme, and preferably on a scooter. No wonder Hayley said to me this morning, “Mickey’s real, Dad.” And you’re not, Dad, she might have added. No one uses money: our expenses are simply deducted from our life total on the Disney card, which of course can be used everywhere, because everything is owned by Disney. There’s a water park called Blizzard Mountain, the conceit of which is that a giant glacier is melting in the middle of Florida, but instead of skiing down runs, you slide down slides in your bathing suit. And that’s the best of the theme parks. Today we are doing Epcot, yesterday was the water park and the Magic Kingdom for the Christmas party, tomorrow, who knows, maybe the Kingdom of Surgical Brain Replacement. This is what is making me grouchy: there is no room for any deviance, for any divergence from the norm, from the package, from the oneness of Mousedom. You are not an individual here, you are a member of the extended and mechanized Mouse Family. Walker too. I guess you
could call that a form of inclusion. But that’s the problem with an official policy of inclusion: you can never be who you really are. I suspect I feel in Disneyworld the way Walker feels in the real world: it has its charms, but mostly we don’t quite fit
.

The all-inclusive version of life comes with an all-inclusive morality too. On the flight here I sat next to a woman of sixty-two. She was flying for the first time in her life. True. And the first time she boards a plane, she flies to Disneyworld! She had the flat, platter-like accent of upstate New York. “My son,” she said as I tried to read my book, “he really believes in family. The other night, I said to him and my daughter-in-law that I’d take the kids one night and they could go to dinner. And he said, ‘No, this is the kids’ holiday.’ And my daughter-in-law, she goes, ‘Well, it’s my holiday too.’ And my son, he said, ‘No, honey, our holiday will come when the kids are grown up.’” I wanted to find her son on the plane and say, “Here, take Hell Boy for a few hours, see how willing you are then to sacrifice your life and your wife’s.” He is the sort of asshole that makes me feel like a failure as a father, because sometimes the only thing that gets me through a day or a night with Walker is the possibility that I might be able to spend a few hours away from him, to read or go for a bike ride or cook something that doesn’t have Pablum dust as the main ingredient. Last night after he dropped off I moved into the living room of our suite to read, but all I could do was listen for peeps and shifts and other signs that Walker was waking up. I don’t have the sixty-two-year-old woman’s son’s selflessness, and I certainly don’t have his single-mindedness. The world rebukes me for my inability to accept Walker’s fate, and thus my own; rebukes me for my vanity and laziness
.

And yet Walker is also the antidote to this self-recrimination. It happened again today, walking through Disneyworld’s Plaza of the Nations or the Congress of the Universe, whatever the hell it
was—a flat, mysterious acreage studded with a forest of flagpoles of many nations. Walker was freaking out, screaming and bashing his ears (he’s not a big fan of Florida’s humidifier weather) and I was talking to him, muttering my steady chant to see if I could distract him, pushing the stroller with my hips while I held his hands above his head, to keep him from smashing. I’d been with him for three hours straight, after he woke up early and I took him for a walk outside so Johanna could sleep (Hayley is sleeping with her aunt, Anne, in the next room). I was near the end of my tether. His screaming had been non-stop for an hour, and under the relentless steamy Florida sun had expanded in my head to the point where the human agony it represented, the displacement and existential isolation it represented, were the only things I could hear or think about or even see: the white band of his noise became a strain of aural glaucoma, closing down all my other senses. I thought, “You know, my boy, there are times when I hate you”—which is not the attitude of the son of the first-time flier, but it was at least momentarily true, and Walker forced me, even allowed me, to admit it. He is the antidote to false consciousness. He will always remind me of where we truly are
.

And somehow—maybe because of the fierce light of his dogged-ness, or because we had survived another meltdown, another encounter with chaos—a force field of resilience formed around us, and gradually, with hiccupping tears and gulping breaths and finally sighs, he stopped crying, and sat back, and rode with me, with no strength left to do anything except take in the details of the passing world
.

A white bungalow on the edge of the city is where my son lives now.

When I’m not there, I can see it in my mind. I think about it all the time since he moved, three years ago now.

A white ranch-style bungalow. Wider than it is long. Ramp to the door. Always at least two cars in the driveway. Sandbox and outdoor toys in the back. Strip mall on the corner, community centre on the other side of the intersection. Names of the kids painted on the glass of the patio door. Charts and medical histories in the kitchen. No carpets (they foul up the wheelchairs and walkers). A busy house.

It’s first-rate as assisted-living homes go: well organized, well staffed (the twenty-four-hour care Walker needs, even asleep), stable. Clean—clean is important. He lives there with seven other handicapped children.

I know his bedroom by heart: blue-green walls, needs another window. But neat. Blond wood chest of drawers. Stickers of soccer balls on the walls. NASCAR bedspreads! Three of them share the room: Marcus (deaf, delayed, anxious, but lively); Yosuf (tall, skinny, delayed, decomposing skeletal strength, sweet and quiet—he always shakes my hand); Walker, the most intellectually delayed of the three.

Picture of Hayley on the wall. Picture of Olga. Picture of his ma. Picture of me.

The closet, military in its order. Bins, labelled: shirts, pants, underpants, spare arm tubes. A picture of a snowman and a pair of boxing gloves, traced out of purple paper. A boy who boxes his own ears, turned into a picture. He has always been that. A boxer, a tough guy: he may be tiny, but he is rugged, and has a bottomless capacity for pain. At his baby shower—held after he was born, because he arrived five weeks prematurely—a friend gave us a George Stubbs print of a famous small bulldog,
Billy Martin
:
a fighting dog
. How apt some gifts turn out to be.

I drove out there the other afternoon after school to fetch him home for a few days. (Did I tell you? He lives there now.) I go out often enough that I can recreate every foot of the route in my head. I tend to speed on the drive to get him; when I’m taking him back I am not so eager. Even after three years, the departures (kiss him goodbye more than once and give him a squeeze and kiss him a final time and then step quickly outside and pull the automatically locking front door of the house shut behind me and walk down the wheelchair ramp to the car) are like small deaths, as if the sun is slowly dimming. As if something wicked and deeply unnatural is occurring.

Today I arrived before Walker was back from school. I waited in the kitchen. The house was completely silent and overcast. Seven people in the living room, the residents of the house—Jasmine, Colin, Yosuf, Tharsika, Cindy and Karen, with Marcus (who reads lips) watching TV with the volume off—but not a sound to be heard. Of course not: none of them can speak. They were lost in their helmets and wheelchairs and their private minds. Scrabbling at the air with their hands. Jumping over and over again, face to the wall. It could have been performance art. Their lonely anxious agony.

Then I heard Walker’s short yellow bus pull up in front of the driveway. I ran out to meet him. “Hello, Beagle!” I said. To my surprise, he jumped into my arms. For all the times I’ve picked him up here since he moved out, I’m never sure he’ll remember me. He always does, but I’m never certain.

I gave him a hell of a squeeze back.

And then, while we gathered his pump and his formula and his meds and his snowpants and his camouflage backpack and his arm cans and his foam helmet (I forgot the stroller), he wandered into the living room.

None of the others said hello, but then, neither could he. He went straight to the Christmas tree instead, in his deliberate way, to examine its ornaments. In that house of eternal silence, he alone was drawn to brightness. I haven’t been able to forget that.

We left quickly. He loves the snow, the outdoors, the fresh air on his ears and his head. Everything he likes is so important to me. They feel like accomplishments.

When Hayley turned fourteen, I began to take her to the ballet. She has been a dancer herself since she was three and it’s my favourite evening out: I wear a bow tie and she wears a dress, and she tells me which moves are difficult and which are not, and we discuss what a dance means, how the movement of the body can make the mind feel things. On those evenings with my graceful daughter, in our seats near the stage, I am grateful that my life has been touched by good fortune and grace.

One night we went to see the National Ballet of Canada performing
Glass Pieces
, originally choreographed by Jerome Robbins to the chanting instrumental music of Philip Glass. Row after row of evenly spaced dancers paced across the stage in identical time to Mr. Glass’s rhythmic score. Occasionally a couple broke step to perform a
pas de deux
, only to be instantly reabsorbed into the rank and file.

A ballet about the life of a great city, in other words, with its armies of people doing the same things in the same impersonal place to the same rhythms, save when they break away from the pack and just as quickly conform and return to position, as we all must. A work of art that lets you see the crisp shape of your own existence, even while you are immersed in your repetitive, blinkered life. A generous, hopeful gesture, a gift of perspective. It brought thick tears to my eyes.

Walker makes people cry too. It can happen any time and eventually does to almost everyone who meets him. But they aren’t tears of loss or pity. I have come to the conclusion that most of the time they’re tears of gratitude.

The disabled, especially the severely disabled and the intellectually challenged, remind us how dark a life can get—every life, not just the handicapped ones. Born out of darkness to head immediately toward another darkness with only a blink of light between: that was Samuel Beckett’s description of the human ride, after all. Most of Beckett’s characters are legless, or confined, or without reason for hope—disabled.

So when Walker does anything to suggest there’s a point to his life besides pain and isolation, it seems particularly brave. For a boy like Walker, an ornament on a Christmas tree could be the Ark of the Covenant: it glitters and snatches his attention, and the shred of care and detail and imagination that went into its making is refracted from its designer to me, or anyone else who can take the time to look at it, through Walker. If I pay attention long enough and sit still long enough to think about it, if I am daring enough not to scurry along to a more “productive” or distracting activity, the idea of hanging a trinket on a tree, a memory on a branch, an ancient pagan ritual, rises into fresh view again. Walker is a lens—one with an unusual shape, I admit—through which to see the world more sharply. Walker makes me see the ornament for what it is—better still, for what it could be, what it might be.
Look here, Pa
, he says,
see what you missed. All you have to do is slow down. Let me show you how
.