by Ian Brown
Sequenom’s new test measured fetal cells in the mother’s blood—a non-invasive blood test that was as accurate as amniocentesis and that could be administered a mere ten weeks into pregnancy. So far the test can determine the sex of the baby and screen for Down syndrome and two other conditions, trisonomy 13 (extra material in the thirteenth chromosome, associated with Patau syndrome, which can create “events” such as cleft palate, extra fingers, severe retardation, heart defects and cryptorchidism) and trisonomy 18 (clenched hands, heart defects, low birth weight, retardation, undescended testicles, a short breastbone and related muscular deformities in the abdominal wall.*) The company plans to widen the test’s capacities to include other disorders such as cystic fibrosis, sickle cell anemia and Tay-Sachs disease. All of which promises less anxiety for pregnant women, especially older ones (or women with older husbands) whose unborn children are at higher risk for genetic disorders.
The test is by no means comprehensive or subtle: it doesn’t pick up rarer conditions such as Walker’s, whose affliction is far worse than that of the majority of Down children, many of whom live normal, reasonably productive lives. Nor can it measure the severity of a syndrome. Even within the range of CFC children, for instance, there are vast differences in capacity. Walker can’t talk or communicate, but Cliffie Conger can, and will very likely live a close-to-normal existence. And yet if Sequenom had a CFC test, it is Cliffie who would show the mutation and pop up on a prenatal CFC test—not Walker. It is Cliffie, the more capable, self-sustaining kid, who would be a candidate for termination. This is a subtlety genetic testing companies do not emphasize in their sales literature.
Nevertheless, the decision to avoid creating such a life in the first place can now be made at ten weeks of pregnancy.* Already in the United States, between 80 and 95 percent of women who receive a prenatal diagnosis of Down syndrome end their pregnancies. The new more accurate blood test will undoubtedly increase that percentage. Result? Down syndrome is en route to endangered status. Meanwhile there are seventy thousand people in the world with cystic fibrosis, and someone with sickle cell anemia—a third of sub-Saharan Africa has the gene—can live to be nearly fifty. Sequenom has both diseases in its pre-emptive sights. Genetic tests are a way to eliminate the imperfect, and all the pain and agony that comes with that imperfection. When Walker was an infant, before he lodged himself in my heart and mind and memory, I spent part of every day furiously wishing that a test had been available, wishing that we had had a choice in the matter of his existence, for his sake and our own as well. Now that I know Walker, I am relieved there was no such test, that I didn’t have to face the ethical dilemma it may soon present. Because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted.
A test avoids all that, for better and for worse.
But if there were a more adequate system of caring for the disabled, if we were less frightened of them, if the prospect of looking after a disabled child did not threaten to destroy the lives of those doing the caring—if we had such alternatives, would we need a test at all?
I finished reading the newspaper story about the new test and got up to do the dishes. Johanna was making a Cobb salad. “What do you think of a test like that?” I said.
She took a long time to answer. “If there’d been a test when I was pregnant that revealed what Walker’s life would have been like, I would have had the abortion.”
I didn’t say anything. I’d made a chocolate cake earlier that morning, and was now trying to scrape the hardened chocolate off the beaters I’d used.
“We were young, we got pregnant right away,” she continued. “There was every chance we could have had another, normal child.” A normal sibling for Hayley, an ally against us when our daughter needed one.
“But then you wouldn’t have had Walker,” I said.
Johanna began to move around the kitchen faster. She was stalling, that was obvious. Finally she said, “You can’t say, after I’ve known Walker, would I have done something to get rid of him? It’s one thing to abort an anonymous fetus. It’s another to murder Walker. A fetus wouldn’t be Walker.”
“What do you think the world would be like without people like Walker—without kids like him, I mean, kids who have real setbacks?” This is not so unreal a possibility, given the sophistication of prenatal testing.
“A world where there were only masters of the universe would be like Sparta. It would not be a kind country. It would be a cruel place.”
“So he has taught you something.”
“He made me realize how good we have it, most of us, most of the time—how we think we have problems, but we really don’t, compared to him.”
More scrubbing, chopping. “But I’m not the person to ask,” she said. “I don’t think I’m a very good person.”
“What do you mean? You’re a perfectly fine person.”
“I couldn’t cope with being with him. I still have mixed feelings about everything I’ve done and everything I haven’t done.”
She was his mother, after all, but she had not saved him. Nor had she become one of the full-time disability moms who never stopped researching and defending their disabled child. Did she have more of an obligation to stay at home with a retarded child than a woman who stayed at home had an obligation to work and be part of “normal” society? I didn’t think so. Johanna had been a superb mother, had done everything there was to do and had done it well, but she was convinced it was not enough. Certainly the world had ignored her plight, but it never let her believe she was guiltless either. A lot of CFC mothers felt the same way. Amy Hess and Molly Santa Cruz did, for instance, and they had stayed home to boot, had become the most proactive super disability-moms I knew. But there was no escaping their guilt: it lived deep in them, deep in the germline of the maternal. Johanna was Walker’s mother, the human being out of whom his flawed and aching body had emerged. She could not think about his brokenness, it called that yelping sadness up from within her, and yet she could not ignore him either. The best she could do was to stay calm, keep busy and moving, keep caring without asking herself too many questions. It was a delicate trick. Like trying to walk in high heels over a grate in the sidewalk, except that the grate passed over hell and eternal damnation.
When she spoke again she said, “I don’t know what Walker’s value is to the world. I’m not sure that I agree that his lasting value is to have touched people. That his whole life has to be this fucking Gandhi thing, making people feel better about themselves. I don’t think his life should only have value because he makes other people feel more contented with their own lives. I think his life should have a value of its own.”
“No, I’m not suggesting that either,” I said. “He might make some people think that way, but his life is a life. Regardless.”
“I don’t have any problem with group homes or with him living as he does,” Johanna said, speaking faster now. “The only problem I ever had with his life was when he was in pain. I couldn’t stand it, it was unbearable. Unbearable pain, and not sleeping.”
“You know,” I said then, “there was no way we could do it alone.”
“Emotionally, I still think if I was any kind of a mother he would still be at home.” She paused, and then the snap happened, as I knew it would. “I don’t feel like his mummy any more. I’m not the person he turns to now.” She was crying, I could tell without looking. I could feel her start to go, as if the floor of the house were falling away.
“He turns to others.” It was the best I could do.
Yes, yes, she was nodding, there was that. “As long as someone loves him every day, I don’t care who it is.” Sobbing now, one of her fast, efficient sobs.
He was an emptiness, a hole in our lives that would always be there. He was here with us and now he wasn’t. Did faci
ng the wound every day make us better people? No. Did we have a choice? No. Did it make us remember the wound? Yes. Does that change anything? I don’t know.
*Notice how many of these symptoms are shared with CFC, Costello and Noonan syndromes (to name just a few candidates), despite the fact that they are associated with radically different genetic and chromosomal causes. Thinking about these similarities often drove me to distraction. According to the popular model propounded by geneticists, each gene leads to a different effect—that’s how geneticists can associate different diseases with different genes. But all sorts of different genetic syndromes share a number of effects, heart problems, mental retardation and facial disfiguration being common to many. How can distant locales in the human genome produce the same effects? (And I am more and more astonished by how similar children with genetic defects are, especially when mental retardation is a symptom.) Obviously the model that genetic science uses to announce its discoveries—gene A causes condition B!—is much too simple to explain how complicated genetic interactions really are. My concern was this: Does an oversimplified model of how a human being comes to be result in an oversimplified model of what a human being is?
*On April 29, 2009, Sequenom announced that the launch of its Down test would be delayed due to “employee mishandling of data and results.” The price of the company’s shares nosedived from $14.91 a share to $4.69. Five days later, on May 4, 2009, a class action shareholder lawsuit was launched in California district court against the company and its officers for “false and misleading statements.” There are other companies, however, that claim to be developing similar tests.
eleven
As long as someone loves him every day.
Who will that be? That is the question.
Like Molly and Eddie Santa Cruz as they tentatively entertained the frightening idea of a group home, like Brenda and Cliff Conger as they argued with Brenda’s stepmother to secure Brenda’s father’s home for Cliffie, like Fergus and Bernice McCann as they looked at the large house they had finally bought for their Melissa and wondered where they would find someone to share it with her—like all of them, as much as I think about getting through the days with Walker, I think more about the future. Who will care for Walker after we are dead?
Johanna and I never entertained the idea that Hayley would “inherit” Walker. This was no reflection on Hayley. I had no doubt she would take a lifelong interest in her brother. Her affection for him guaranteed that, and she wasn’t one to walk away from an obligation. If anything she was too dutiful, a serious person made more grave by years of living in the often lonely shadow of Walker’s need. (At fifteen, she wanted to work in Africa, building houses for orphans.)
But I knew how much work Walker required, and how impossible it was for one or two or three or even four people to care for him adequately, to do everything that needed to be done, and still live productive, engaged lives in any other way. Hayley’s life was her own; that, at least, was a gift we would give her. I refused to cover her with the thick, wet cloak of guilt under which many families of disabled children operate—a swamp of irrationality that has afflicted social thinking about disability for millennia. My wife and I often discussed having more children (definitely one, occasionally two)—brothers and sisters for Hayley and Walker—allies to insulate him from the world, but also to dispel our guilt. There are political factions and even entire governments that tap into this guilt and suggest that family is the only real solution to the problem of caring for the disabled.
But families, like disabilities, are not uniform or consistent. They’re anything but perfect. No one asks to join them, and more than half the time they don’t last. As a result—this was my thinking—the nuclear family is no model for a system to care for the severely disabled. Even if I did decide to provide lifelong care for Walker through the vehicle of a large primary family—and I’d need at least six kids living all their lives in the same place to take care of him properly—is that a responsible (never mind realistic) choice, in an overburdened, overpopulated world?
My mind raced around these ideas like a Jeep circling a minefield.
The truth is, even the best care available left me riddled with doubt. Walker’s group home was and is the best of its kind. But what if its funding failed? And was it the best of all possible places for Walker to be? The fact that Walker had a second home where he was cared for in ways we couldn’t manage didn’t stop me from wanting to improve it (as wary as I am of even mentioning the fact, for fear that what he has will somehow be taken away from him—a special brand of anxiety that plagues every parent who has a disabled child in care). Walker’s home is run by an organization that offers assisted living at a thoroughly professional level. But how does one make a professional operation a home as well—a place full of compassion where people are forgiven endlessly, to use Mother Teresa’s definition? Walker had a home where he was taken care of, but was it also a family? Would the place he was cared for after we died also feel like his home, occupied by a group of friends and measured by the collective inner life created by its residents?
That was the kind of home I wanted for Walker. There was a group of forward-thinkers in British Columbia known as the Planned Lifetime Advocacy Initiative, which developed networks of contacts and friends around pods of disabled individuals. It was a newfangled notion, however, and far away, and still required, from what I could see, a battle for money that I didn’t know how to win. More to the point, I had to contend with my own skepticism. I found it hard to believe a place existed that would let my son live his life as he could, and regard him well for it.
But in the spring of 2008, after I published a story about Walker, I received a letter from a man named Jean-Louis Munn. He was the communications director of the Canadian branch of L’Arche, an organization based in France that operated a string of 135 communities for the intellectually disabled that stretched from Toronto to Kuwait. They weren’t an option for Walker: the waiting list was twenty years long and they accepted only adults. But Munn wanted me to visit him in Montreal. There, in a former church hall in Verdun, a working-class community on the southern edge of the city, I saw for the first time the outline of the unthinkable community I was looking for. In that community, I was the stranger.
The church hall was the administrative centre of the Verdun branch of L’Arche. L’Arche had been founded in a single house in France in 1964 by Jean Vanier, the son of Georges Vanier, a famous Canadian diplomat. A lifelong student of philosophy and Catholic theology, Jean Vanier still lived in the village of Trosly-Breuil, where he ate lunch most days with his disabled companions.
That was in France. In Montreal, mass was being served in the basement of the church hall when I arrived. L’Arche had been founded on Catholic precepts (another reason I had avoided L’Arche as a possibility for Walker, though the organization has since widened its spiritual foundation). But the mass in the church basement was unlike any I’d ever seen—more along the lines of a village meeting, held in a pub over a raucous meal, with a satire of a church service thrown in for entertainment.
The altar was tucked into a corner where a stairway met a wall; the equivalent of the vestry was simply a space cordoned off by office dividers. A tall black priest in white vestments and a coloured scarf was administering the Host in a loose approximation of the liturgy. The service didn’t seem to have a strict beginning or end. The priest was alternating between French and English, and talking about Jesus and his flock. Every once in a while he asked a question, and someone called out an answer.
“Why do we say Jesus is a shepherd?” the priest asked.
“Jesus has people who follow him, like sheep, right?” This from a thirtyish man standing halfway back in the congregation. He was wearing a black hockey jersey with Canada across the back in red script. Several jokes about sheep ensued.
There were twenty-one people in the corner of the church basement, all adults, most of them evidently handicapped. Three spun a
round to examine me as I walked in; two immediately reached out to shake or hold my hand. I didn’t know what they expected of me.
“Where else have we heard these words, about Jesus being a shepherd?” the priest asked.
“Bap-bap-baptism with Jesus?” someone stuttered.
“Oh!” the priest said. More applause, then acknowledgment of that applause with even more applause.
A band—two guitarists and a drummer—began to play, accompanied by a steady chorus of coughing and airway-clearing; the service might as well have been held in a tubercular ward. A woman in front of me—short, stooped, in her sixties, her mouth permanently open—looked at my tie and whooped, loudly. Another man walked back to me and said, “I’m praying for you.” I have to say I felt I could use the help. “What’s your name?” he added in French, as an afterthought. We stood for the interdiction and the tie-whooper reached back for my hand; she did not want to let it go. I worried about germs, briefly. They wanted to be friends.
In front of me, the man in the hockey jersey (I later learned his name was Ricky) reached his arm around Richard, an older, balder man standing beside him. Richard was wearing a black sweater and checked shirt and a thick strap of black elastic to hold his glasses on. Ricky squeezed his pal, and whispered something in his ear. The older man sighed and said, “Ohhh! I like you too.”
There were seven L’Arche assistants in the group, one for every two residents, and that seemed to be sufficient. One of the assistants, a First Nations woman in her twenties, put her face down to the face of the man with Down syndrome beside her, and then touched his forehead with her finger. Every so often, Jean-Louis Munn, my host, recognized someone in the crowd and gave me a nudge and an update. “When he came twenty years ago,” he said, gesturing with his head to a tall, still man in a green shirt, “he was so nervous his hands were always curled up into fists.” Now the man seemed content to dispel his anxieties with only a little lip-licking.