The Boy In The Moon Part 8

After the shower I dressed and walked into the village, through a small construction site: L'Arche was building two new foyers foyers, transforming old buildings into new residences. (The French government had recently recodified housing requirements for the handicapped, and the retrofit had already become a serious financial challenge.) It was early spring-there were buds the size of peewee footb.a.l.l.s on the trees. An owl was hooting. The best routine, Garry had explained, was to buy something to eat at the boulangerie, and then take it next door to the hotel for un cafe un cafe. There was only one thing to remember. "When you go in, say 'monsieurs, mesdames mesdames'-that way at least they won't think you're some completely rude tourist." I sat in the square, working up my nerve. Some teenagers were hanging out at the bus stop next to me, smoking. How did I get so frightened of everything? To take a shower, to buy bread in French, to step into a tiny country hotel-afraid to be be. r.e.t.a.r.ded, incapable of language, afraid of what others would think.

Walker never worries about any of that.

I stepped into the boulangerie. One of L'Arche's residents was there already, a young thin girl with a high, stalling voice, a stammer-as if her body would never be quite ready for her mind. She, however, managed to buy breakfast for her entire house. I leapt into the fray. Thanks to my French, I ended by buying twice as much bread as I could ever eat-the woman thought I wanted two baguettes, and I didn't know how to dissuade her. But at least I had breakfast. I moved with my armful of bread down the street to the hotel. "Bonjours, mesdames mesdames, messieurs messieurs," I sang as I crossed the threshold. Two large French gentlemen in leather jackets sat at the bar. They looked at me as if I were a visiting madman.

But now it was done, and it was nothing.

I understand how insubstantial this seems, how minor: man buys a coffee in French! But it was Gege and JeanClaude, and my own Walker, who reminded me how to do that simplest thing. They reminded me not to be ashamed. That is never a small accomplishment. The essayist Wendell Berry even thought to write a poem about it: You will be walking some night in the comfortable dark of your yard and suddenly a great light will s.h.i.+ne round about you, and behind you will be a wall you never saw before.

It will be clear to you suddenly that you were about to escape, and that you are guilty: you misread the complex instructions, you are not a member, you lost your card or never had one. And you will know that they have been there all along, their eyes on your letters and books, their hands in your pockets, their ears wired to your bed.

Though you have done nothing shameful, they will want you to be ashamed.

They will want you to kneel and weep and say you should have been like them.

And once you say you are ashamed, reading the page they hold out to you, then such light as you have made in your history will leave you.

They will no longer need to pursue you.

You will pursue them, begging forgiveness.

They will not forgive you.

There is no power against them.

It is only candor that is aloof from them, only an inward clarity, unashamed, that they cannot reach. Be ready.

When their light has picked you out and their questions are asked, say to them: "I am not ashamed." A sure horizon will come around you. The heron will begin his evening flightfrom the hilltop.

At eighty, Vanier was preparing for the end of his life. He was wary of public honours and awards, and didn't want to be cast as an expert. "I don't want to be more of an authority than I already am," he said to me the next morning. "I want to be less of one." He didn't want to be bitter, the way so many old people were, "upset at the grief of not having power." People keep thinking they are supposed to behave one way or another, think one thing or another, believe in one G.o.d or another, but "you don't have to do anything. You have to cross out 'have to.' Just be. And let it come. What is to come will come. The greatest fear of human beings is the fear of power, and the fear of failure, and the fear of guilt. That we are guilty. What of? Disobeying the law. But what law? We don't know."

"Oh," I said. "So the guilt is unavoidable."

"Yes. That's the problem. There's a really interesting text in Genesis, which is one of the oldest books we have about the beginnings of humanity. At one point Adam and Eve separate from G.o.d. And G.o.d runs after them. He says, 'Where are you, it's me, G.o.d. Where are you?' He doesn't say, 'You're no good.' He just says, 'Where are you?'

"And Adam responds, 'I was frightened because I was naked. And so I hid.' So: fear, nakedness and hiding. What is that nakedness? It's our mortality. Whether we like it or not, we are not in control. And so, the whole reality for human beings is to accept oneself as one is."

"Walker," I said, suddenly, "he can't speak. And I have a language with him where I connect with him by clicking. And he recognizes it, and sometimes responds." I did a little imitation of our clicking.

"He's clicking, and you're clicking, and I call that communion," Vanier said. "You're vulnerable to him, he's vulnerable to you. You're not doing something for him. You're just with him. Clicking. I like that expression. So when you're with Walker and you're clicking, you're grateful for one another. You can imagine how grateful he is, because this is Dad, looking at him. And you're grateful, because he's looking at you, at the child within you. Not looking at you as somebody who's written the best something or other. He's looking at you as you really are in the depths of your being."

I'm not suggesting this is the only way to understand a profoundly disabled boy. But Vanier said these things. Sometimes they made sense to me, and sometimes they seemed the exclusive thoughts of a man with a deep religious faith I did not share.

I took comfort in what Vanier said about Walker's value, and yet the effort of believing it was sometimes exhausting.

Later that day, the day of my bakery breakthrough, I came upon Francine, taking the sun in her wheelchair. She was parked on the path that led from La s.e.m.e.nce out to the road; Lydie, the pretty a.s.sistant from the south of France, was fifteen feet away, raking the garden. "Comment ca va?" "Comment ca va?" I said to Francine, and touched her shoulder. I was already moving away when she grabbed my hand, and then my arm. She was powerful; she pulled my face close to hers. She was spastic, palsied, but her mouth was open, making growling noises that got louder and louder. Her mouth was near my ear, her teeth a derangement of s.p.a.ces: I thought she was going to bite me. I didn't know what to do, so I hugged her, gave her a kiss. I looked up, and Lydie was watching us. "I'm sorry," I said in my bad French. "I think I upset her." I said to Francine, and touched her shoulder. I was already moving away when she grabbed my hand, and then my arm. She was powerful; she pulled my face close to hers. She was spastic, palsied, but her mouth was open, making growling noises that got louder and louder. Her mouth was near my ear, her teeth a derangement of s.p.a.ces: I thought she was going to bite me. I didn't know what to do, so I hugged her, gave her a kiss. I looked up, and Lydie was watching us. "I'm sorry," I said in my bad French. "I think I upset her."

"No, it is good," Lydie said. "She likes men." Then she turned back to raking the leaves.

By the time Walker was two, I seldom thought about him without also thinking about death-mine, mostly, but sometimes his. At night after he fell asleep, if if he fell asleep, or in the middle of the night if I woke and he did not, I saw the years stretched out ahead of us, unchanging. I wondered if I would have an opportunity to do anything but care for him; wondered whether caring for Walker eventually would erode and erase my affection for my wife. I imagined where all my worry went, what abscesses and cankers it was breeding. he fell asleep, or in the middle of the night if I woke and he did not, I saw the years stretched out ahead of us, unchanging. I wondered if I would have an opportunity to do anything but care for him; wondered whether caring for Walker eventually would erode and erase my affection for my wife. I imagined where all my worry went, what abscesses and cankers it was breeding.

But mostly I worried about dying: about going too soon, before I had a chance to arrange the future, and what would happen to him afterwards. I wondered if it might be a relief if he died, and whether it might be a relief if I did too. Money was a constant worry, a canyon. Because I didn't want Johanna to be stuck with the double burden of looking after Walker alone and making the family's income by herself in the event of my predeceasing her (as my bank manager put it), I bought mortgage insurance. That was $500 a month. Olga's salary and Walker's formula sucked away more than $40,000 a year. (For many years Walker's formula bill was $800 a month, four times the cost of regular infant formula, and not covered by my benefits at work-food, after all, is not a deduction. I spent another $800 a month on groceries for the rest of the family, and we ate well for that; Walker's had to be some fantastic formula! These days it's $1,200 a month because it is, according to the manufacturer's description, "pre-digested" for children who suffer from reflux.) Prescription costs, medical devices, even the toll for parking at the Hospital for Sick Children (at least $9 every time we were there)-it all added to the usual wear and tear that a family puts on a health plan. It was always interesting to see when our benefits would top out: mid-August? Or would we make it to September this year? Three years after he moved into the home, I'm still paying off Walker-related debts.

On especially difficult nights, or if it rained hard, or most of all after the terrible arguments my wife and I sometimes had, strained by sleeplessness and ashamed of our failure with this strange boy, I asked myself if it might not be braver to take my life, and to take Walker with me. Suicide is not my default setting. But the hopelessness of life ahead, caring for Walker, could raise the spectre in me. There was chloral hydrate; there were pills. There was the car, there were places to drive the car off of, there were lakes to walk into.

One of my secret death fantasies was to pack Walker into a baby backpack I owned, a kind of Snugli, and take him high up into the mountains of western Canada in the winter, one of my favourite places on earth, and lie down in a s...o...b..nk, and end it there, quietly, hypothermically. I imagined the venture in complete detail, how I would pick a moment when Johanna was at a movie and Hayley was at school, how I would get him out of the house and to the airport, with all his gear and all the ski equipment. Unfortunately that alone derailed my death fantasy: if I could get through that f.u.c.king nightmare, the airport with Walker and skis, I could survive anything, and there was no need to kill myself. It wasn't quite what Nietzsche meant when he wrote that the thought of suicide has saved many a life, but it would do.

And anyway I couldn't do it-because of Hayley, because of Johanna, because of me, and because of Walker too. Because they expected me to keep going. Because they needed a good example-the standard chant of the well-meaning father.

Occasionally I had an even more radical thought: I could just fall into caring for Walker. That thought had some appeal too, a soft smothering fated feel. I suspect many mothers, and especially many single mothers, know it-neither optimistic nor pessimistic, merely resigned. At least that way I would avoid the resentment, the awful changeovers from my watch to my wife's and back again. One of us would at last be in charge. Taking care of Walker was so all-consuming that all the time you weren't caring for him, you had to spend catching up-on sleep, on work, on ch.o.r.es and tasks and taxes and returning phone calls, not to mention whatever exigencies and emergencies were waiting as far as his care was concerned. Whoever was caring for Walker, the other person was perforce catching up, and so it always felt as if you were doing it alone, on your own. You couldn't help but feel resentful.

Do you recognize any of this? I suspected on those dark nights that no one else did, that no one else knew what this was like; I was convinced we were alone. It's hard to explain how we felt for having failed to teach Walker to sleep or speak or eat or pee or even look at us-can you imagine the magnitude of that failure? I know it is not rational, but we felt responsible. You can't help what you feel, not in the middle of the night on the back porch of a little ramshackle house in the middle of the city, with the white fluorescent light from the kitchen of the Chinese family next door s.h.i.+ning out over your backyard like a floodlight in a concentration camp, with Young Frankenstein himself asleep upstairs on the third floor, the third floor that is like Everest to reach some nights. There were nights I was so far gone, so tired, so spent and totalled, I would start to laugh as I plodded down the hall, and I would keep laughing for minutes at a time. A madman. I felt like a well-trained dog who realizes he cannot learn this last new trick. Christ, I was so tired: I can remember literally lifting my legs with my left hand, one after the other, as if they were logs, hefty stumps, up the stairs, and pulling on the banister with my right hand for leverage. I can remember thinking: I can't do much more of this I can't do much more of this. I was forty-four years old at the time.

One evening I was so exhausted I fell down the stairs with Walker in my arms: my heel slipped on the lip of the step, I fell backwards, the familiar bolt of terror sucking my breath out of my throat, that thought, Walker Walker, flas.h.i.+ng through my whole body, whereupon I curled my arms around him and made a sled of myself, and we shot down, Walkie on my chest, until we b.u.mped to a stop at the bottom. He laughed. Loved it. And so, I did too. He took me into darkness but he was often the way out of it as well.

After three and a half days, L'Arche started to feel normal. Everyday life there had a natural rhythm and sense of purpose, however unconventional it was. I had a lot of time to think.

I went to France because I wanted to see if there was a graceful, meaningful way for Walker to live in this world-to see for myself if it was possible to create not just a roof over his head for when I was gone, not just an ad hoc solution to his needs, but a community and family he might call his own, even-this was the most radical notion-a liberty and a freedom he could claim.

And if that kind of community was possible, how could the cost be justified? Compa.s.sion wasn't a good enough reason, historically. Could creating and sustaining that sort of community also provide a substantial, concrete benefit for the rest of us, the non-disabled? I wanted to know if Walker's life had some value. It seemed to me it did. Vanier said it did.

Gilles Le Cardinal had gone one step further. He had proof.

Le Cardinal is professor emeritus of communication and information studies at Compiegne 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 foyers in Compiegne where she worked. in Compiegne where she worked.

"I was incompetent as an a.s.sistant," 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 a.n.a.lyst 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 a.n.a.lyze L'Arche. He made a list of all the "shareholders" in a foyer foyer-the residents, a.s.sistants, 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 s.e.m.e.nce, I could see this dynamic had been in play: Gege 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 a.s.sumed 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 b.u.t.ter on a knife. "If you want to spread b.u.t.ter, 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 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 a.s.sessing 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 Chern.o.byl 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 a.s.sume 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 Compiegne, eating the simple but delicious ca.s.soulet his wife Dominique had kindly prepared for us. It was as if we were sitting in a secret clubhouse, pa.s.sing 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 compet.i.tive 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 a.s.sa.s.sination 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 crus.h.i.+ngly sad.

Though sad 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. 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 pa.s.sed 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 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. 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 a.s.sistants, 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 s.e.xual ma.s.seuses 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 s.e.xual 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 s.h.i.+tsack 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 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 h.e.l.l Boy for a few hours, see how willing you are then to sacrifice your life and your wife's." He is the sort of a.s.shole 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 s.h.i.+fts 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 h.e.l.l it was-a flat, mysterious acreage studded with a forest of flagpoles of many nations. Walker was freaking out, screaming and bas.h.i.+ng 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, pus.h.i.+ng the stroller with my hips while I held his hands above his head, to keep him from smas.h.i.+ng. 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 att.i.tude 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 was-a flat, mysterious acreage studded with a forest of flagpoles of many nations. Walker was freaking out, screaming and bas.h.i.+ng 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, pus.h.i.+ng the stroller with my hips while I held his hands above his head, to keep him from smas.h.i.+ng. 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 att.i.tude 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 pa.s.sing 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 gla.s.s 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 a.s.sisted-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 b.a.l.l.s 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: s.h.i.+rts, 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 Billy Martin: a fighting dog 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. "h.e.l.lo, 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 h.e.l.l 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 h.e.l.lo, 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 Gla.s.s Pieces Gla.s.s Pieces, originally ch.o.r.eographed by Jerome Robbins to the chanting instrumental music of Philip Gla.s.s. Row after row of evenly s.p.a.ced dancers paced across the stage in identical time to Mr. Gla.s.s's rhythmic score. Occasionally a couple broke step to perform a pas de deux 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 repet.i.tive, 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 grat.i.tude.

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 s.n.a.t.c.hes 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 Look here, Pa, he says, see what you missed. All you have to do is slow down. Let me show you how see what you missed. All you have to do is slow down. Let me show you how.

If my son is trying not to succ.u.mb to pain and suddenly finds it bigger than him and is stricken with grief at his defeat and a deeper, graver wave of crying erupts from within him-that too makes me cry. Why? Because it's painful to watch? No: his pain makes me angry. What makes me weep, I suspect, is the hidden optimism in even that crisis: at least he had hopes of beating that pain, was expecting that it might pa.s.s. A pal from Winnipeg put it well the other day, apropos of something else: at the end of the day, there's always a cup of grog for the undefeated.