Where does abnormality end?
Scientific advances bring more questions
There was an unpleasant eeriness to Kari Stefansson’s matterof-fact words, even if what he was saying was accurate. “My understanding,” the Icelandic neurologist told CBS News correspondent Elaine Quijano on a recent television episode, “is that we have basically eradicated, almost, Down syndrome from our society.”
Stefansson was talking about Iceland. There, almost 100 per cent of pregnant women who get a prenatal test result showing that their fetus has Down syndrome will choose to end their pregnancy. And what is a virtual certainty in Iceland ( as well as in Denmark, where Down syndrome termination rates are 98 per cent) is far from an aberration in Canada. Here at home, the number of babies born with Down syndrome is significantly lower than would be predicted to occur naturally — almost certainly in large part because of abortions. In the United States, the rate of abortion of fetuses discovered to have Down syndrome is 67 per cent.
These numbers might be unsurprising if Down syndrome were a genetic disorder that caused profound physical suffering for those who have it. Tay- Sachs disease — another chromosomal abnormality — can render infants deaf and blind and unable to swallow or move, for example. Most children with Tay- Sachs die before they reach kindergarten.
But Down syndrome is far less cruel. Those who have it have an average life expectancy of 60 years, with the physical manifestations of the condition usually confined to noticeable facial and height differences, along with treatable medical problems such as umbilical hernias and — in less than half of people with Down syndrome — congenital heart defects. Agerelated dementia also often occurs two or three decades earlier than it does in the rest of the population.
In our current society, what most significantly distinguishes people with Down syndrome, though, are their intellectual disabilities. These disabilities are usually mild to moderate, yet they’re still marked enough to make it very difficult for most of those with the syndrome to live independently or hold a job. And I’d venture to guess that that is usually the crux of the motivation for choosing not to have a child with Down syndrome — the preference for having a son or daughter who can be expected to develop robust everyday social and practical skills. Which isn’t a morally suspect preference.
Is it not human to hope for a baby who will be able to live a full and happy life, eventually taking care of himself and perhaps having a family of his own — who will be OK once his parents are no longer around to look after him? You can call it selfish to wish for such a child. You can call it weak. You can ask if it’s right to want to escape the burden of a child who will require extra time and care and understanding — who will be clearly, inescapably different.
You can call this line of thinking many things: practical, cruel, short- sighted, realistic, unsurprising, heartless, kind, inescapable. But it does seem, ultimately, a very ordinary way to look at things and I can attest to feeling this way myself. Yet this instinct is founded on a lot of questionable assumptions: that a person with Down syndrome can’t live a full and happy life; that only a parent would love and help someone with Down syndrome; that having a “normal” child makes parenting easier and/ or more fulfilling.
INSTINCT FOUNDED ON QUESTIONABLE ASSUMPTIONS.
It reminds me of the Buddha quote: “Better it is to live one day seeing the rise and fall of things than to live a hundred years without ever seeing the rise and fall of things.” ( That’s a real quote from Buddhist scripture, by the way, in addition to being a motivational commonplace Pinterest clip and something you’d find written in a fortune cookie). The Buddha equates the greatness of a life with knowing reality, rather than with living for a long time ( or, presumably, with living in perfect health, or having a conventionally attractive face and body, etc.).
True, I don’t know that people with Down syndrome can achieve the clear-minded enlightenment that Buddha suggests makes a life worthwhile. But I also don’t know that they can’t — or that they can’t achieve whatever it is that would make life worthwhile for them — which is what makes the whole idea of dismissing the lives of people with Down syndrome before they can begin so disturbing, even if it’s understandable.
It is true that eradicating disease feels like progress; I’m even comfortable saying it is progress, mostly because it usually lessens suffering. But as science and medicine progress, we’ll have to give careful thought to where abnormality ends and disease begins … and who gets to decide what it means for a life to be worth living.