Disability must be valued

Sujeet Desai giving a lectureOn March 21, the second annual World Down Syndrome Day is being celebrated in communities around the globe. The date signifies the uniqueness of Down syndrome in the triplication of the 21st chromosome. In my community, the Down Syndrome Association of Northeast Indiana (DSANI) is hosting its seventh annual meeting featuring Sujeet Desai, an accomplished 25-year-old from Rome, New York. Sujeet plays six instruments including violin, piano and alto sax. He has a second degree Black Belt in Tae Kwon Do and holds several Special Olympics medals in swimming, alpine skiing and cross-country running. Sujeet and his wife Carrie Bergeron-Desai were recently featured in articles appearing in the Wall Street Journal and the New York Times. They have also appeared on national television on "20/20," "Oprah" and "The View." Both Sujeet and Carrie have Down syndrome. Sadly, recommendations released in January by the American College of Obstetricians and Gynecologists (ACOG) cast a dark cloud on this celebration. The College now recommends "that all pregnant women, regardless of their age, be offered screening for Down syndrome. Previously, women were automatically offered testing if they were 35 years old and older." What the College fails to note in their press release, yet reported in the Wall Street Journal in 2005, is that studies have shown that early detection of Down syndrome in pregnancies has resulted in an 80 to 90 per cent termination rate. Another study estimates that the number of Down syndrome live births in the U.S. declined by 7.8 per cent from 1989 to 2001, which its authors suggest is likely the result of prenatal testing, leading to termination of pregnancies. While some may see ACOG's recommendations as just another reflection of the pro-choice versus pro-life debate, a more informed understanding of these alarming trends reveals a different issue at hand. Recommending guidelines, which have led to the termination of 80 to 90 per cent of a specific population, is tantamount to advocating the practice of eugenics, ie, selection by judgment of genetic worthiness. Down syndrome is a natural human condition, not a disease suitable for extinction. The College’s guidelines -- that all pregnant women, regardless of age, be screened for Down syndrome -- are a subtle yet important step down a different but very disturbing path of a selection process which takes the lives of people with disabilities first. The National Down Syndrome Congress, of which our local Down Syndrome Association is an affiliate, "condemns" the recent recommendations as conveying "tacit approval for terminating pregnancies where the fetus has Down syndrome". The medical doctors comprising the National Down Syndrome Congress’ Professional Advisory Committee cite the concern that "recent studies by Dr Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005), note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information". Individuals with Down syndrome, like my own daughter Amy, and others with disabilities, present challenges, yes, but challenges are inherent to parenting any child. People like Amy also offer love and affection, laughter and joy. They teach us compassion and acceptance. They test our character. They also show us that followers can sometimes be the greatest leaders. Individuals with Down syndrome, just like everyone else, form friendships, establish goals and realise dreams. And, like Sujeet Desai and his wife Carrie, they want to form relationships, contribute to society, sometimes marry, and lead happy and fulfilling lives. Disability is a natural part of the human condition as each of us is less than perfect. Why attack those with Down syndrome as less worthy than others in this world? Simply because that hereditary condition is now easier to diagnose prenatally? Over the past 30 years the United States has enacted progressive human rights legislation for people with disabilities, including the Americans with Disabilities Act and the Individuals with Disabilities Education Act. How can we celebrate our social enlightenment while targeting that same human population for termination? As we celebrate World Down Syndrome Day on March 21, let us call upon our obstetricians, gynaecologists and family doctors, as well as each other, to value individuals with Down syndrome and all people with disabilities. Let us embrace and respect our humanity. For who among us is not worthy of this right? Jenny Bockerstette is the mother of an eight-year-old daughter with Down syndrome, a founding member of the Down Syndrome Association of Northeast Indiana, and the incoming president of the association.


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