In the early years of my son's life, before I understood how far outside the norm his disabilities took us, I was always astonished to hear a parent say, “I wouldn't change my disabled child for anything.”
My wife, Johanna – an exceptionally compassionate person, and a terrific mother – never made such statements.
“I hear parents of other handicapped kids saying all the time, ‘I wouldn't change my child, I wouldn't trade him for anything,'” Johanna once said to me. We were lying on our backs in bed, talking in the night, which we did on the rare occasions Walker fell asleep. Talking into the darkness, you could say anything. “But I would. I would trade Walker, if I could push a button, for the most average child in the world, who got C's in school. I would trade him in an instant.
“I wouldn't trade him for my sake, for our sake. But I would trade him for his sake. I think Walker has a very, very hard life.”
Trading him still isn't possible, but choosing him is getting closer. A new raft of ultra-accurate, at-home, fetal-DNA tests are flying off North American drugstore and Internet shelves these days, and a massive debate is close behind.
The DNA-testing industry (which is growing so fast that the U.S. Federal Drug Administration is investigating the tests) has no sooner offered us the opportunity to select the number and gender of the babies we can have – to say nothing of the chance to guarantee they are free of some debilitating syndrome – than doctors and bioethicists are up in arms, accusing medical researchers of promoting genetic cleansing.
These arguments come along every few years now. The more science lets us interfere in the beginnings of life, to engineer what kind of babies we can make, the more we seem to need to debate who we want to be as human beings. Maybe this should tell us something.
In my house, such debates always bring on an identity crisis. Walker suffers from CFC, an impossibly rare affliction (150 known cases, globally) caused by a completely random genetic mutation. He's 15 now, looks 10 and has the mind of a two-year-old. He always will.
He is an often charming and fantastic companion, but he can't speak, or live on his own (or even with us, any more), or manage the toilet, or eat without a tube, or go for long without smashing his ears flat and ugly with his fists.
We raised him on our own for 10 years, and the experience almost shattered everything I valued – my family, my marriage, my healthy daughter's life, my finances, my friendships, life as I wanted to live it.
There was no genetic test for his syndrome when he was born (there still isn't). For a long time, not a day went by when I didn't wish there'd been one. Today, I'm glad no test existed then – that I never had to decide, based on a piece of paper damp with my wife's blood, whether my strange and lonely boy ought to exist.
Still, wouldn't he have been better off, thanks to a simple genetic test, not living his shadowy, pain-filled, so-called life? I understand the question. I understand the appeal of the DNA test, its trouble-free promise. But the answer is complicated.
Pregnant women can now self-administer a simple blood test as early as the seventh week of pregnancy, and know, with 95-per-cent accuracy, the gender of the child they will be having. This, in turn, gives them the opportunity to abort the fetus if it's not the gender they want. A set of fertility clinics in Los Angeles, New York and Mexico recently reported that 85 per cent of their clients wanted to select for sex (for purposes of “family balancing”) – and that three-quarters of those clients came from overseas. (Some manufacturers of gender-testing kits refuse to sell them in India and China for that reason.)
The smorgasbord of genetic choices doesn't stop there. Women who use fertility drugs to have children now find a growing number of perinatologists willing to reduce healthy twins to a singleton in utero – purely for the convenience of the woman, as there is rarely any medical need today to perform the procedure.
And couples who buy donor eggs and sperm from commercial fertility clinics can now select for hair colour, ethnicity, temperament, athleticism and intellectual prowess – even for the length of the donor's eyelashes. If you think that's creepy, recall that at the beginning of the 20th century, cosmetic surgery was considered creepy too.
We do these things not just because we need to, but because we can. Ethics follow technology, not the other way around.
Of course, there are more humane and significant uses for the new tests. Duchenne muscular dystrophy afflicts only boys, and a test can accurately identify the genders of potential candidates and evade the burden of a troubled life. Fetal-DNA researchers are reportedly close to marketing a cheap, accurate blood test for Down syndrome (which 800,000 people in North America live with); similar screens will soon identify even more serious genetic diseases in utero, such as cystic fibrosis (70,000 people worldwide) and sickle-cell anemia (20 per cent of the sub-Saharan population).
Geneticists even predict the imminent arrival of the holy grail of the medical testing business, “the $1,000 genome” – the (fairly) cheap sequencing of all the most important exons (nucleic-acid sequences) in a fetus's DNA.
That will vastly expand would-be parents' understanding of the sicknesses their fetus is heir to (provided geneticists can figure out how to read the data – there are, after all, 4,000 known single-gene diseases), and increase the odds they will take abortive action if a serious syndrome is revealed, thereby avoiding a great deal of pain and trouble and medical expense. Danish newspapers have predicted a Down-syndrome-free society by 2030.
Needless to say, there are a lot of people who find this revolution in genetic choice alarming and inhuman. Margaret Somerville, the well-known medical ethicist at McGill University, recently lambasted the prospect of widespread prenatal testing as a symptom of our diminished respect for human life. She called it nothing short of a “search and destroy” mission to wipe out disabled people.
But Dr. Somerville is an ethicist. The geneticists I know keep clear of the ethical debate. David Chitayat, a clinical pediatrician and geneticist at Toronto's Hospital for Sick Children, thinks Dr. Somerville is talking nonsense.
“We're not doing screening to eliminate Down syndrome,” Dr. Chitayat explained rather testily the other day, when I phoned to see if he could help me sort out my complicated feelings. No amount of screening, he points out, will eliminate the genes that cause Down syndrome. But he stoutly defends the right of parents to a choice in the matter.
In his view, the value of all life, even the life of the disabled, is counterweighed by the downside of any serious genetic syndrome – the physical toll it takes on the child and the family, the cataclysmic lack of government funding for lodging and care, and the isolation and parental guilt a serious syndrome causes.
“Dr. Somerville can do what she wants,” he said, “but the decision to screen and to act is an individual decision. Let's say this is true – that severely disabled people teach us something. That is one thing. But to tell someone this is what they have to do because they cannot screen, that they have to have a disabled child? Does she know how many husbands leave when a disabled child is born into a family? Or what the impact is on other children? It's an individual decision in the context of the family about what is good and what's bad. The family decides.”
“Would you have taken the test and had an abortion,” I once asked my wife, “if there had been one?” It was his loneliness I couldn't bear, the boy's own sad sense of how different he was. Somehow he knew that.
“If there had been a test when I was pregnant that revealed what Walker's life would have been like, I would have had the abortion.”
“But then you wouldn't have had Walker,” I said.
Suddenly Johanna began to move around the kitchen a little faster. “You can't say that 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?” I asked. It was an obnoxious thing to ask. “Without kids like him, I mean, kids who have real setbacks.” Fetal-DNA testing makes this more and more of a possibility.
I'll always remember her answer. “A world where there are only masters of the universe would be like Sparta,” she said. “It would not be a kind country. It would be a cruel place.”
By then she was crying.
I suspect the reason we can't stop debating the value of genetic testing, despite its many virtues, is that we don't care to choose our fates.
Genetic control threatens what Harvard University political scientist Michael Sandel, in his book The Case Against Perfection, calls our “lively sense of the contingency of our gifts – our sense that none of us is wholly responsible for his or her success, [which]saves a meritocratic society from the smug assumption that that success is the crown of virtue.”
We aren't really scared of the slick and dreamless future Dr. Somerville conjures out of her distaste for quasi-therapeutic abortion. We aren't even that afraid of what perfections we might attempt with genetic technology. We're afraid of what the new biotechnology will do to us – that its “stance of mastery and control,” as Carl Elliott, a brilliant bioethicist in Minnesota, has written, “leaves insufficient cultural space for the alternate ways of living a human life.”
I have no objection to genetic testing. If you can avoid it, I don't want your child to face the daunting, aimless future Walker may have, especially after his mother and I are gone.
But I have an objection if the results of those tests are the only measure you accept of what constitutes a valuable life. I object if you say that my son is a mistake, that we don't want more of him, and deny what he is: an exotic, living form of freedom; a way of being liberated from the grind of the survival of the fittest; free of all the orthodoxies by which we normals measure a “successful” life – the Harvard acceptance, the hot partner, the good job, the fit body, the millions.
Disability is by nature anti-establishment. It's the very lack of so-called normal expectations, the absence of the possibility that Walker and I can ever “achieve” much or even disappoint each other, that frees us from the established and the status quo, to be who we actually are with each other, rather than what society says we are supposed to be. A rare and often impossible form of love lies in that small hollow.
Genetic tests are a way to try to eliminate the imperfect, and all the pain and fear that comes with imperfection. (Especially our own.) But imperfection is not just pain and agony.
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, and that judgment is our least valuable human capacity.
In terms of physical human evolution, he is a mistake, an error. But he is peerless as a way of developing what Charles Darwin himself in The Descent of Man deemed the evolutionary advantages of “the social instincts … love, and the distinct emotion of sympathy.”
I see him for three days every two weeks, now that he lives mostly in an assisted-living home. When he does come home, I try to take him for a walk down Bloor Street, the big city artery nearest our house, him in his chair and me on foot.
I lean down and push the chair with my elbows, so I can talk in the ear hole of his soft foam helmet. “Look, Walkie,” I say, “look, the white micro-miniskirt is back this summer!” Or: “That Hungarian butcher has had that same side of meat hanging there for a year – let's never eat in there.”
I say all sorts of things, whatever comes to view. I am pretty sure he understands none of it, rationally. But he knows we are having a Conversation, and he knows he is on one end of it. The wriggling, blasting laugh of pleasure our yakking always gives him reminds me again and again how important it is to make that gesture – to engage another, to try to reach the Other, no matter how remote the likelihood of any return or result or reward.
It doesn't matter that Walker will never pass his genetic test. What matters is that I pass his test, that I had a chance to be a human being, a friend, a chatting buddy, a decent if doltish dad, and that I seized it.
I am ashamed to say I regret many things in my life. But I never regret those pointless but utterly unpredictable strolls, those strange, lifting afternoons on the hot city sidewalk with the test-failing boy. They're just one more way of measuring what we might be.
Ian Brown is a feature writer for The Globe and Mail.
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