Last year, a headline by CBS News declared that in Iceland, “Down syndrome is disappearing.” You would be forgiven if, upon reading the headline, you assumed that Icelandic doctors had discovered a cure for the chromosomal disorder.
Your assumptions would be wrong. The real reason why Down syndrome is disappearing in Iceland is because fetuses that test positive for the disorder are being aborted at astronomical rates — nearly 100 percent. Eighty to 85 percent of parents and expecting mothers choose to screen for Down syndrome. Upon receiving positive results, nearly all of them choose to abort the pregnancy. In Iceland, there are, on average, two people born with Down syndrome each year.
In the dystopian novels we are accustomed to reading, the power of the state predominates. In “1984,” the surveillance of Big Brother is ever-present and ever-watchful. In “Brave New World,” even the womb is not exempt from the government’s social engineering.
And while in some parts of the world the threat of government remains the most relevant factor — in China, for instance, surveillance and fertility have long been domains of the Communist Party — in other parts of the world, namely our own, the nightmares are sometimes of our own making; they’re cultural and a result of our own personal choices. Correcting for them requires cultural changes in our attitudes toward suffering and pain, toward the dignity of life and accepting the things we cannot change with grace rather than with torturous rebellion.
There is no state mandate in Iceland to terminate fetuses that test positive for Down syndrome. There is no gun or threat of jail time hanging over the heads of Icelandic parents. It is simply the culture — a culture that has decided firmly that, for some, it would be better never to have been born. Perhaps there are some lives not worth living. That is a matter for debate.
Personally, I believe that to decide as a culture that those with Down syndrome should be aborted rather than see life is an affront to whatever universal moral law there may be. If abortion carries with it no moral quandary, as some believe, then certainly in this view, it is no heavier a burden to abort a pregnancy for this reason than for any other.
Unfortunately, for those who hold this view, it puts them in the position of having to defend a world where it is culturally permissible, and even encouraged, to abort any fetus with the telltale signs of Down syndrome. If there is nothing sinister about this, then there is little that is sinister.
That is all up for debate. To make the case one way or another, it should be imperative to hear from those with Down syndrome themselves. And so I’ll give Frank Stephens, a man with Down syndrome who testified before Congress about this very issue, a voice in this column. During his testimony, Stephens pleaded: “Just so there is no confusion, let me say that I am not a research scientist. However, no one knows more about life with Down Syndrome than I do. Whatever you learn today, please remember this: I am a man with Down syndrome and my life is worth living.”
Indeed. Though ensuring that he does not “have to justify his existence,” Stephens nonetheless goes on to name all the benefits people who have Down syndrome offer — from scientific research regarding cancer and Alzheimer’s disease, to the fact that kids with Down syndrome and their parents are happier than the population at large.
Those are good arguments. It is a shame they have to be made at all. There are few classes of people that must be forced to testify before Congress to make the simple and desperate case that people like them should be allowed to live. Some would collapse under the burden or the insult. Yet Stephens does what he must, where others — extra chromosome or not — might not be able to.
To a world with more Frank Stephenses.
Aaron Bondar is a junior double-majoring in political science and economics.