by Ian Brown
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 chores 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 shining 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 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, flashing 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 bumped 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? Compassion 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 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 cen
tral 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 a
m: 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.