Iceland, Oh, Iceland!


I have always wanted to visit Iceland! I used to be a geology major, and Iceland is a geologist's dream. It really is a wondrous place, physically, and a fascinating place historically and culturally. It's always an interesting place genetically, too, because it is a small, fairly inbred population. In other words, what's not to like? I want to go!

Well, until I saw this op-ed today, which has caused me some grief. Iceland is apparently proud that it has, for all intents and purposes, eliminated Down's Syndrome from their island. Iceland has done this by making prenatal testing for Down's Syndrome freely available to all women, and then by offering women an abortion if the test indicates the baby will have the Syndrome. Virtually all women whose tests are positive choose to abort. As one commenter points out, this is precisely like the Nazi concept of "Lebensunwertes Leben" ("life not worth living"), which they used to justify killing Down's Syndrome individuals in Germany during their reign.

This cuts pretty close to home for me, because three of my children have cystic fibrosis (CF). CF fetuses are also routinely aborted, and mothers are often pressured by guilt-tripping them into calculating what the cost of the child will be to the health care system. It's no surprise that 95% of CF fetuses identified in the womb are aborted. Of course, what is ironic is that now there are fairly effective modulators to treat CF, which those aborted will never see: if they had been allowed to live, there would have been real therapies for these children.

One mother of a CF child actually sued for "wrongful birth," because she would have opted to "protect" him from CF by killing him if someone had told her pre-birth that he had that condition.

A mother of two CF children responded to this lawsuit: "People are not born with expiration dates tattooed on their feet. No one knows how long any of us has on this earth. Our society has become prejudiced against people who are perceived as disabled in any way, and they are deemed unworthy of the investment of love and resources. The value of human beings exists not in how much money they have or in their abilities, their physical beauty, or their social standing. We must value every life because it is unique and irreplaceable. I hope that all children with cystic fibrosis have someone in their lives who lets them know that they are worth the effort. Life is hard enough without being told that you should never have been born."

One of the most eloquent essays I have ever read by a person with CF is an essay by a young man about why he was grateful his mother did not abort him. He died at the age of 23, but he was living fire. His soul was a flame of light. His name was Richard Andrew Young; you can read his essay here.

So what kind of society is glad to be rid of chldren with Down's Syndrome and CF? How perfect must you be to have a life worth living in such a society? Maybe I don't want to go to Iceland, after all.