The Boy in the Moon: A Father's Search for His Disabled Son (29 page)

Trish was married to a thin, wiry, older man named Cory. “He makes bouillon cubes,” she told me one evening. I admit it came as a surprise: I had never considered that an individual might make bouillon cubes, though of course some individuals must and one of them is Trish’s husband. He owned his own business, and worked long hours. He’d started out making gravy that he sold to chip wagons, and from there he moved into essences and sauces and spices. I had a lot of time for those bouillon stories.

Trish and Cory had a little girl, Hailey—so named after Trish met our daughter, Hayley, and admired the name—and they were into flipping houses and cottages, something they’d done twice, with some success. Trish didn’t want a second child until they could move closer to Cory’s business, so he could be home more. “Thank God. I feel like I have two, with Walker.” It shocked me when she said that. She thought of Walker as her own, at least part of the time.

Trish grew up in Grand Falls, Newfoundland, where her father worked in the local mines and the paper mill. She was a tall, forthright, practical person with a pretty face and a square jaw, an extrovert and unselfconscious. She first looked after someone with a disability, a girl with cerebral palsy named Dylan, when she was sixteen. Trish taught Sunday school and spoke openly of her belief in God—another experience Walker might not have had if left solely to an upbringing in our staunchly secular household. She had a degree in early childhood education, but the specialty was too academic for her tastes: she preferred the rough-and-tumble of the kids themselves, the earthiness of their needs. She liked a practical challenge, liked to fix their problems. She’d been hired specifically by the organization that ran Walker’s group home to look after Walker, and she took pride that she had done so well with a boy everyone acknowledged was a tough case. She worked nights, in seventy-two-hour stretches, three nights one week, four the next. It seemed like a gruelling schedule, but Trish welcomed it; that way she could be with her daughter before and after nursery school, and she had health care and benefits. I came to think of her as a sister, except for the cleavage.

Walker loved Trish almost as intensely as he loved Olga. Olga was Walker’s second mother and father: he did anything for her, went anywhere with her. Olga could make Walker spin on the spot and smile like a madman just by singing “The Wheels on the Bus Go Round and Round,” something she did dozens of times a day when she was with him. He was also fond of Will, his other night worker (who worked when Trish was off), a tall, gentle guy in his twenties. Will was as quiet as Trish was chatty, but Walker was devoted to him. And Walker adored Jermayne, his day worker for more than two years.

Jermayne was Jamaican, six-foot-four with braids and a voice so low it made my chest vibrate as if a train were passing a few blocks over. My wife had a slight crush on him. He liked kids: if you asked Jermayne how many children he had of his own, he’d say, “Two, at home.” His daughter was ten: Walker would walk up to her and give her his hand to be led. “Jermayne treated Walker like a part of his family,” Trish told me. “He got socialized with Jermayne. The first time they met, Walker wiped his nose on Jermayne’s black pants. ‘You’re going to be best friends,’ I told Jermayne, and they
were
best friends. They played basketball, after a fashion. They were bros. Jermayne’d say, ‘Walker, let’s go,’ and Walker would go, ‘Hunh!’ ‘These days Walker gravitates towards men.’”

I dressed Walker in the kind of clothes I wore—checked shirts and corduroy, jeans and a sweater. After Jermayne came into his life, Walker showed up back at our home with a skull-tight haircut, in silky basketball shorts and jerseys and baseball caps, DJ Head Thumper. Because of Jermayne he began to respond to reggae on the car radio; a strong backbeat always made him smile. It was as if he’d been away in a foreign country and was telling me what he’d seen and heard and tasted.

He wasn’t just a different boy with Will and Trish and Tyna and Jermayne: he was their boy, just as he was my boy and Johanna’s boy and Olga’s boy; he belonged more and more to all of us, because he was the sort of boy no one person could manage alone. That was the price and the marvel of his life.

“All of his clothes folded in there, in his closet, that’s all me,” Trish said to me one afternoon. At home we woke him up; Trish let him rise on his own. “He likes to think it’s his idea.” For months the lot next door to the group home had been a building site. “He
loved
that,” Trish said. “I say, ‘Let’s look at the trucks.’ I’m very close to him. Very fond of him. They call me the Walker Whisperer at work. I find that when he’s going down, he’s tired, but he doesn’t want to miss anything.” The difference between Trish and us was that Trish wasn’t Walker’s mother: she could look after him, but she could also detach herself, see him clearly, less emotionally.

She claimed she never doubted our decision to move Walker to a group home. When she first met Walker, before he wore a helmet or arm cans (I was convinced the restraints would frustrate him to the point of madness), when he was still rubbing his skin raw with his fists, despite our constant efforts to prevent it, she said, “I knew you having put him there was a cry for help. I don’t know how you did it for that long. And when I first went there, I didn’t know if I could do it. You have to get it into your head that his obstinacy and hitting and crying are not malicious. That maybe when he thumps you, it’s more ‘I like the way it feels, and you should too.’” Trish was one of the women who had invented Walker’s arm cans, fashioning the original pair out of recycled Pringles potato chip cans. The first time the workers slipped them onto Walker and he discovered he couldn’t whack himself any more, she remembers, “He sighed. He sighed. And then he just picked up a toy and played with it.” Trish rerouted his brain.

It was Trish who suggested he wear a helmet, Trish who suggested a weighted blanket (fabric with weights sewn into it), to give him a more reassuring awareness of his own physical outline. She had shifting ideas on why he hit himself. “Sometimes it’s out of frustration. And sometimes it’s out of loneliness. And sometimes I don’t know. Or if he’s hot—he’s a hot kid. Or if he’s dropped his toy and can’t get it. Or if his meds are coming up—sometimes I can see it, and sometimes I can’t. He’s hard to figure out. Sometimes he’ll just do the one punch. He’ll be pouty, sad, and then he’ll just do one. Get one in. Does it just knock his vision into place a bit?”

Described by others, Walker’s life sounded more purposeful, more complete than it sometimes seemed to me, his father. “He loves the smell of my coffee,” Trish informed me. “He’s obsessed with my coffee. Caramel macchiatto. He could care less about flowers. He likes the harder stuff, pine and rosemary.”

He could also be more difficult than anyone let on: he ripped through workers at a clip, at least twenty by Trish’s count. “The new people come in and they’ll last two weeks and they’ll say, ‘I can’t do it.’ He either likes you from the get-go, or he doesn’t. Because he’s like that.” He was stubborn, and he had both a temper and a sense of humour, like his father and mother, respectively. “Sometimes someone will say a joke and I swear he’ll laugh,” Trish said. “Not a complex joke, but a joke. And I think he swears. When I tell him to do something, he throws his book at me. And I’ll say, ‘Walker, you don’t throw your book at me, you go get that.’ And he’ll go ‘Hunh!’. And I swear he’s swearing. Like, ‘Fuck you, lady.’” Of course, I have no idea where he gets that from. He didn’t like being told what to do.

She figured he understood the words
pick up
and
come
and
stop
and
leave it
, which was more than I gave him most days. “I think Walker is much nicer than some kids I’ve been with,” Trish told me. “But the unknown with Walker makes him more difficult. Walker can have a relationship—he can have a conversation of sorts, he has a sense of a person.” He knew who to persist with, and who wouldn’t respond. He was nice to people who were nice to him. “But with Walker, if something’s wrong, you don’t know how to fix it.”

Trish had a view of Walker’s future as well, and to my relief it was tolerant, one that suggested others might see something in him. “Walker, I mean, he’ll never have a job,” Trish said one afternoon. We were sitting in the formal living room of her house in the suburbs: it didn’t look like a room that was used much. “And he’ll never have a paycheck. But things change for Walker. And without giving him the opportunity to see new things, he won’t become who he is. He learns. He’s learning. The sounds he makes tell you that. Now when you say, give me five, he gives you five. That’s huge. I think it’s huge. So I don’t think he’s done, developmentally. He’s constantly listening. It just takes him longer to process it.”

A few months later Trish dropped some bad news: she and Cory had found a farm north of the city, near his work. Now Cory could live and work in the same neighbourhood, which meant he’d be home more, and not commuting. They could get on with their own family, make a brother or sister for their daughter. After Christmas, Trish would no longer be working with Walker, except on special occasions. It was another loss, like Jermayne (whose back fell apart), like Tanya (who had a child of her own). But Will was still there, and someone new would be there, and we were there, the ongoing community of Walker.

Trish insisted he’d weather it well. “The other night I came in—Saturday—he was just kicking and screaming. But when he’s happy, when he’s content, he’s the most beautiful child. His smile, when he smiles, he melts you. That goofy little grin, that sideways look. People stop me sometimes with him, they ask, ‘Do you need help?’ You get that pity look, you know? And it’s not necessary. Because if you see his happy look, you don’t pity him.”

fourteen

Walker makes me live here and now; he leaves me no choice. But he is also a product of the past, like everyone else. The history of the care of the mentally retarded is the story of our discomfort with the irrational, our struggle with what frightens us, our longing to control what we encounter. There’s archaeological evidence of Neanderthal man caring for his physically handicapped co-tribalists (intellectual delay wasn’t so noticeable then, I suspect), but such moments are decidedly rare over the course of civilized human history. Our more usual motto has been “out of sight, out of mind.” Infanticide of the disabled peaked when it least needed to, at the height of Athens’s affluence and influence; it was Plato and Aristotle who both suggested (for different reasons) that the deformed be put away at birth. Meanwhile in Sparta a father had the right to terminate the life of a weak child. The mentally crippled were raised in the dark in Rome, as that was thought to be therapeutic, at least until the Roman surgeon Soranus (with a name like that, how could he not be a physician?), the father of gynecology and pediatrics, argued against the practice. He also insisted that rubbing the heads of the intellectually handicapped with oil of thyme and wild rose was not going to cure them.

In the original Greek,
idios
simply meant a private or unknowable person—thus the word
idiot
, which for roughly twenty centuries, and as late as the 1930s in North America, was still accepted terminology for someone with profound intellectual disabilities from birth, as opposed to an
imbecile
, someone who was born normal but later became mentally disabled, and who might recover. Walker would have qualified as an idiot: he is a public boy, raised almost by committee, but also intensely hidden and unknowable, hence private. Christianity introduced the idea that someone like Walker was closer to God (“for he that is least among you all, the same shall be great:” Luke 9:46), but the Christian church also encouraged the belief that the disabled and the insane were witches, possessed by the devil, or were a form of punishment for their parents’ sins. Britain’s Poor Laws of 1563 and 1601 required the state to care for the disabled, but until well into the nineteenth century a handicapped or retarded soul was much better off with a wealthy, loving family and a large home. Even in many parts of North America today, this is still the case.

A lot depended on where you lived. The nasty, aforementioned Martin Luther hated and denounced the disabled as possessions of the devil, but in Frankfurt the mentally challenged were assigned minders, and in Nuremberg (at least for a stretch) they were allowed to roam the streets unmolested, to be fed and comforted by neighbours. Tycho Brahe, the first modern astronomer (and Kepler’s mentor), kept a retarded dwarf as a companion, and listened to his mutterings as if they were divine revelations. But in Prussia the mad were often burned or jailed. Society couldn’t seem to make up its mind about intellectual disability (the distinction between madness and intellectual disability was first drawn in the 1500s, but only sporadically): the spectacle of human disarray was fascinating, but also too terrifying to watch for long. The result, as Michel Foucault insists in his magnificent and maddening
History of Madness
, was the suppression of not just madness, but the idea of madness, through the invention of confinement. Confinement is a way of containing the problem, keeping it within our grasp and out of sight. We have been organizing and categorizing and “solving” intellectual disability since at least the onset of the Age of Reason—when Descartes decided that he existed only because his brain was capable of thinking that he existed. But in the course of making the problem appear to disappear by appearing to contain and resolve it, society has also managed to contain, and box in, its own fear of disability, our terror at the prospect of physically engaging with it. Madness, profound retardation, and even blithe cretinism were once considered to be existential states. Madness was irrational, but it was not an affliction that needed to be cured; madness, Foucault notes, was “not about truth in the world but about man and the truth about himself that he can perceive.” Walker showed me what I didn’t want to see—his vast needs, the limits but also the potential of my capabilities and compassion—but also what I would never have seen without him—his capacity to make a passing moment memorable, and my capacity to appreciate its significance. No one wanted to be mad, but madness had its purposes, as a route into difficult self-contemplation. In the pre-scientific world of Shakespeare and Cervantes, where art and alchemy and logic and divine revelation and experience all enjoyed equal status, madness was a direct shaft into the darkness of human existence. Born into pain and sadness, only to face … death! What could the nightmare of existence possibly mean? Even to contemplate its purpose required a special vision and point of view. Madness and mental affliction were fast cars through that tunnel. Intellectual instability was an excuse to be unconventional, to think unconventionally. Shakespeare’s fools, or lunatics on a ship of fools, are allowed to speak their minds and reveal the vanity of our daily goals and the outright denials by which we live our everyday lives—they can’t help it, they’re defectives. In medieval Europe, wandering madmen were forced to live just outside a city’s gates, but were invited in on occasion to entertain the residents—to reveal the shape of the residents’ lives. There are days when I contemplate Walker’s home on the outskirts of the city where I live, and think: not so different.

But madmen and mental defectives challenged the social order, Foucault insists, and so were calibrated (which meant they could be “understood”) and then suppressed (“treated” and confined). Foucault’s vision of history and civilization as engines of human repression sometimes left me bewildered and often struck me as over the top, but I understood his point: if I get too much satisfaction out of simply being with Walker, out of being forced to be myself, I will contribute less to the keep-up-with-the Joneses, get-ahead-at-all-costs, other-directed, results-oriented rat race of Western capitalism that produced, for instance, the global economic defrosting of 2008. We desire the status quo, Foucault claims, so we set out to “cure” or “solve” madness.

By the late 1500s intellectual deficiency had been quantified for the first time: a sot and idiot was someone who couldn’t count twenty pence, couldn’t say who his mother or father were, couldn’t reason what was to his profit. By 1801, Philippe Pinel, the father of psychiatry, had laid down the rules: there wasn’t much hope for educating mental defectives, but humane attention to their physical requirements was the least society could offer. (Of the 31,951 children admitted to the Paris Foundling Asylum between 1771 and 1777, nearly 25,000, or 80 percent, died within a year.) Pinel was unorthodox: he chose a career in medicine over one in the church, after a close friend went mad. But his desire to help mentally deficient human beings by rationalizing and organizing and controlling them also produced some of the most inhumane conditions in the history of Europe. In Salpâtrière, the famous Paris asylum Pinel directed, three thousand women were dressed in burlap sacks, and slept five to a bed; their daily rations were a mug of gruel, an ounce of meat and three slices of bread. Over a thousand people “deprived of reason” lived in one wing alone. In Bicâtre, another, even more atrocious Parisian asylum Pinel oversaw, criminals lived side by side with the mentally incapacitated, and food was often served, by necessity, on the point of a bayonet. And yet this vision of controlled madness caught on and reassured Europe’s citizens, in the same way that the construction of prisons has reassured many American voters for the past thirty years that their society is ordered and safe and just. Confinement of the mentally disabled became the rage: one out of every hundred residents of Paris spent time in an institution.

Nor did it stop with Pinel in France. By 1890 the number of people in European asylums had more than doubled. “A new dividing line has appeared,” Foucault writes, “rendering the experience so familiar to the Renaissance—unreasonable reason, or reasoned Unreason—impossible.” I have no interest in romanticizing mental disability, but I know what those oxymorons mean: they are a way to try to understand Walker and myself, by listening to a boy who cannot speak, by following a boy who has no known direction.

It was against the incarcerating, bureaucratizing, controlling impulse of the rational establishment that an alternative view of disability slowly flickered on. In Italy, Vincenzo Chiarugi banned the use of chains on asylum inmates nearly a decade before Pinel did. “It is a supreme moral duty and medical obligation to respect the insane individual as a person,” Chiarugi wrote. The struggle to do that—to treat the intellectually disabled as individuals, as equal and contributing members of society, no matter how subtle or small their contribution is, and how reluctant we are to understand what it might be—is the unresolved struggle in the history of intellectual disability. No one can deny that huge progress has been made. The last 150 years alone have radically improved the physical lives of people such as Walker. Pasteur and Lister and germ theory, Marie Curie and X-rays, Virchow and his cells, Gregor Mendel’s investigations of heredity, Darwin and evolution, Freud and the unconscious, even gene science, have all contributed to the lot and to the understanding of the intellectually disabled, as have popular education and recent legal reinforcements of the right of the disabled to live their own lives. But we still think “results” are the only reassuring measure of human success, and we still perpetrate injustices to maintain the illusion that we’re producing results. As recently as 1964 Jean Vanier bought his small house for two intellectually disabled men because the conditions he found in institutions (in France, no less) alarmed him. It was only a year ago that I met Linda Pruessen over lunch one day in Toronto and she explained how her sister, Caroline, who is globally delayed and in her thirties, still lives at home with her parents, who are now both sixty-four years old and still trying to create a way for Caroline to live happily without them. For Pruessen’s parents, arranging to see a movie on a Friday night is as complicated as planning a two-week vacation.

“The model we’re given now is this idea of mainstreaming,” Pruessen explained. “The idea is, get the disabled person into the community. But that breaks down at some point because my sister is never going to be able to be part of the community. It’s noticeable, for instance, that she’s physically different. If you take her into a hair salon, she’s going to get looks. Is that fair to her? Is it not reasonable to expect her to be able to get a haircut without weird looks?” We spend eighteen years integrating people like Walker into public schools, and then at eighteen, when they come to the end of high school, we turn them back out into a society that is anything but integrated. Walker will be saved that fate because he has never been capable of being “integrated” in the first place.

These injustices abound. Specialized medical services for the disabled are still in such short supply in Saskatoon, Saskatchewan, that Julia Woodsworth, a twenty-year-old with CFC who lives with her mother, Pam, and her father, Eric, has had to wait as long as
three years
to get a dental appointment. “I feel like at every stage of Julia’s life we’ve had to be trailblazers,” Pam Woodsworth said. “But I haven’t found there’s been a real growth in some of the options where people with disabilities are concerned.” Saskatoon is just a hundred miles east of Wilkie, Saskatchewan, where in 1993 Robert Latimer asphyxiated his quadriplegic twelve-year-old daughter, Tracy, because he couldn’t stand to see her suffer any longer. He was sentenced to life for second-degree murder. “I think, as a family, I have a lot of empathy for the Latimers,” Pam Woodsworth said to me the same day Latimer was denied parole. (The decision was reversed and parole granted months later.) “The big remaining question for me is, why isn’t our province on trial? What he did was an act of despair. That family wasn’t getting the support they needed. I’m really interested in how, as members of a civil society, we’re all complicit in Tracy’s death.”

Now that the government in Ontario, which runs the provincial health care system where I live, is keen to be seen to be eliminating waiting times for surgery, if I want a new knee so I can ski better, I can have one in six months. If I know the right doctor, I can probably have the procedure in two weeks. Why, then, did it take seven years of looking and asking and begging to find a decent place where my son would be adequately cared for, where he could actually be the person he is?

These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community, with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful—not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be “integrated” into their society, who have to adapt to
their
pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives—slowly, and without much of an agenda beyond merely being himself.

Because in my fantasy lots of people
want
to visit and live in Walker’s society for extended stretches at a time. Composers, writers, artists, students, MBA types doing their doctorates in business administration, researchers, executives on sabbatical—we too can enjoy the privilege of living in Walker’s village for a few weeks or months at a time, in pleasant rooms of our own where we’re encouraged to pursue our work, our art and our studies. Our only obligation is to integrate ourselves into the disabled world by eating lunch and dinner with them, and, once a week, by giving one of the residents a bath. The rest of the time we are free to think and write and paint and compose and analyze and calculate. But by then the disabled will have done their work, accomplished their goals, and changed the way we see the world. We will have benefited far more than we have benefited them, but they won’t mind. Walker will have made his contribution, by simply being there. As I say, a fantasy.