"We don’t know what we’re handing you"

by Emma Van der Klift

Last week we received word that my husband has been nominated for an honourary doctorate. I caught myself wondering for a brief moment what the physician who attended his birth forty years ago might have had to say about this. If this momentary musing seems confusingly unrelated to the event, I assure you it is not. Let me explain. In some ways, one event is about potential, the other about its realization. At both events, you might expect to hear words of congratulation. Certainly, at least in some circles, the honourary doctorate generates all kinds of it. However, that was not the case for Norm forty years ago. In fact, at the time of his birth, the doctor had few words of congratulation, little of the expected happy small talk. "Potential" wasn’t discussed. Instead, Norm’s doctor told his parents "We don’t know what we’re handing you".

"We don’t know what we’re handing you." That line used to infuriate me, probably because the doctor used the dehumanizing "what" as opposed to a more accurate "who". While I still take exception to that word, it seems to me now that the most important part of the sentence might in fact be contained in the first three words. It’s an unusual admission for a doctor, and in the light of recent events, I’ve come to wonder if Norm might not owe his life to it.

Here’s why. In direct contrast to Norm’s family doctor, Peter Singer, an American bioethicist, seems to think he pretty much does know what’s being handed to parents at the point of birth. In his controversial pro-euthanasia book, "Rethinking Life and Death: The Collapse of Our Traditional Ethics", Singer advocates infanticide of babies with what he calls "clouded prospects" -- either at birth or during the first twenty eight days of life. Later, just in case the "prospects" are a little too difficult to gauge that early on, he hedges his bets by speculating that this period might even extend to include the first five years of life. And exactly what is a "clouded prospect"? Reading Singer, we realize that he’s not just talking about children who may not survive either birth, the first month, or the subsequent five years. Initially, at least, he’s referring to infants with Down Syndrome. However, he doesn’t limit himself. We are led to conclude that the words "clouded prospects" are a nauseating euphemism for "disability".

Although Norm’s doctor wisely admitted his inability to make predictions about the future with any accuracy, it’s clear that Norm wasn’t considered a very "viable" specimen at birth. For one thing, although he was a big baby, the damage done to his brain by the forceps used to deliver him suppressed the two reflexes most critical for infant survival, crying and sucking. For the first few months of his life, his mother and grandmother had to feed him with an eyedropper and watch him with a level of vigilance that the parents of babies who are able to communicate their needs or distress through crying never have to consider. It was also increasingly obvious that he would have significant motor impairments, and it was unclear what effect, if any, had been made on his congnitive abilities. The official diagnosis? Cerebral palsy, of uncertain severity. All in all, a "clouded" prognosis. A good candidate for Singer’s approach? Probably.

Too many of my friends with mental or physical disabilities tell stories about doctors and other professionals who, like Singer, thought they could predict for the long-term. Many went on to paint sensationalistic "worst case scenario" pictures for the still-shocked and uninformed parents in the vulnerable moments directly following the birth of their disabled children. Often parents felt pressured into decisions they later regretted on the basis of these supposedly credible "portraits". After all, these were the doctors. These were the experts. They should know what’s possible, what the best course of action is, shouldn’t they? In fact, there are countless individuals with disabilities who are living testimony to the fact that the doctors and professionals do not know and did not accurately predict their potential.

While scores of disabled people are still subjected to problematic and sometimes downright cruel "remedial" treatments that include incarceration in institutions, segregation, unneeded surgeries and painful therapy programs, the legal options presented to parents do not currently include infanticide*. However, if so-called ethicists like Singer get their way, that could all change. It’s appalling enough to know that Singer, who, incidentally, wrote the chapter on medical ethics for the Encyclopedia Britannica, is out there advocating infanticide. Unfortunately, we also know he’s not alone in his opinions. For example, in the Netherlands, a country currently practicing widespread euthanasia, assisted suicide, and "mercy killing", Singer’s colleagues are busy petitioning the Supreme Court for the right to legalize infanticide .

It’s open season on children with disabilities. When a mother who drowns her six year old in the bathtub because he had autism claims a mental breakdown, she gets two years probation in a half-way house, and then the Autism Society of Canada responds by hiring her to become their fund-raiser! When Robert Latimer is charged and convicted in the death of his twelve year old disabled daughter, Tracy, the public won’t rest until the appeal process renders him blameless and sentenceless. He’s become a gruesome folk hero. The Appleby family in Kentucky pleaded undying (pardon the black pun) "love and caring" for their mentally disabled daughter and sister -- after they lovingly and caringly facilitated her death by neglect and starvation in a back room of the family home!

The value society places on individuals with disabilities is becoming shockingly clear. Faced with a growing number of child murders perpetrated by parents upon their disabled offspring, the public seems unable to respond with the clarity reserved for the parents who murder their nondisabled children. As a society, we seem both unable and unwilling to decide the morality of this issue. In fact, the public begins to look suspiciously like the proverbial deer caught in the headlights -- stunned moral relativists unable to finally mouth anything better than weak platitudes about not being able to "judge what goes on in someone else’s family", and the effects of overwhelming "stress" on the parents of children with disabilities. Words like "mercy" , "compassion", "caring", and "love" are readily bandied about in connection with these deaths, and met with noises of sympathy and support. Sympathy and support for the murdering parent, that is. Not for the dead child.

For Norm, as for many individuals with disabilities, the road from birth to the present has been circuitous and at times, difficult. However, if you ask him to describe the difficulties he’s faced, he’ll tell you that few of them have to do with the physical limitations of disability. While those limitations do exist, the most painful elements of his life have to do with the attitudes and assumptions of non-disabled people. To sum it up more succinctly, bigotry and prejudice are the primary problems. But, even if he’d had the ability to predict these potential problems at birth, would he really have wanted to be "spared" them? I don’t think so. "Spare" us instead from the kind of empathy that believes it is walking in another person’s moccasins while in fact it is reacting to a barely submerged set of prejudices, faulty assumptions and unfounded inferences about the quality of life possible for someone with a disability. "Spare" us instead from the lethal benevolence of those who would seek to alleviate suffering (or even the appearance or possibility of future suffering) with a "final solution".

Unfortunately, we the public are guilty of more than mere sloppy thinking. To the extent that we continue to accept arguments of mitigation for the murderers of our disabled citizens, we become implicate in these and every subsequent so-called "mercy killing" or infanticide. When we mistake homicide for care and compassion, we help to create a climate where these and other atrocities become possible. Don’t forget that the Action T4 program, which facilitated the murder of 200,00 Germans with disabilities during WW ll was precipitated by the "mercy killing" of a disabled child by his father, a German farmer.

So, harking back to Norm’s inauspicious birth, and viewing it in the context of his life since then, it seems fitting to ask; who could have predicted? Who is presumptuous enough to believe they can look ahead and make final life and death pronouncements about anyone’s future "quality of life"? The honest doctor, or parent, for that matter, is obliged to say he or she doesn’t know who that infant will become, or what will constitute a meaningful life for that individual. We cannot make decisions like these for others, decisions unthinkingly based on societal prejudices and beliefs about disability, beliefs that continue to lurk under a misleading overlay of compassion and empathy. We must ask ourselves: is it really better to kill the baby than challenge the society? Better admit, then, that we kill our humanity in the process.

Today, while Norm and I sit on our sailboat and toast each other and our wonderful life with a glass of not terribly expensive but pretty nice wine, let doctors, professionals, parents and caregivers hear the resonance of that toast -- "To Life!"