From time to time, we are all confronted with the disconnect between how we see ourselves and how others see us. I've always seen myself as a responsible, law-abiding citizen. I recycle, I vote, I don't drive a Hummer. But I've come to realize that many in the scientific and medical community view me as grossly irresponsible. Indeed, in the words of Bob Edwards, the scientist who facilitated the birth of England's first test-tube baby, I am a "sinner." A recent book even branded me a "genetic outlaw." My transgression? I am one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies.It certainly is a good article to read. If I have some time later, I will write some comments.
UPDATE: The article's main thrust concerns the place of disabled individuals (with Down syndrome, etc) in a technologically-advanced culture, whose medicinal practices seek to "alleviate potential suffering and protect the quality of the lives they are bringing into the world." What kind of message are we sending in our attempts to eliminate "unfit" embryos from being born into the world through the usage of genetic screening? The author of the article, Elizabeth Schiltz, does not suggest we abandon the usage of genetic testing but rather wants our attention to focus on what we do with the knowledge we gain from such testing. In a beautiful summation to the story, Schiltz concludes:
I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a "cure" for my son's Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, "But how will you know who I am, then?" And I would also think hard about whether the world would really be a better place without my son's soft, gentle, deep, almond-shaped eyes.The alleviation of "suffering" in regards to individuals with Down syndrom reminds me of a poignant passage from Stanley Hauerwas' essay, "Suffering the Retarded":
The challenge of learning to know, to be with, and care for the retarded is nothing less than learning to know, be with, and love God. God’s face is the face of the retarded; God’s body is the body of the retarded; God’s being is that of the retarded. For the God we Christians must learn to worship is not a god of self-sufficient power, a god who in self-possession needs no one.... God is not separated from himself or us by his suffering; rather, his suffering makes it possible for him to share our life and for us to share his.Since I am in the middle of my thesis research, I hesitate to continue further with more comments, but maybe down the road I will take up this issue again.