The Register Citizen (Torrington, CT)
Eliminating suffering? Not even close
Last week, CBS News shocked the world with its report claiming that Iceland was on the verge of “eradicating” Down syndrome. Upon a closer look, it is clear that Iceland is not eliminating Down syndrome through positive preventive methods or therapeutic treatments. Rather, it is eliminating an entire population of people via abortion.
Originally discovered by French pediatrician Jerome Lejeune in 1959, Down syndrome affects an estimated 6 million people worldwide. Denmark boasts a 98 percent termination rate of babies who test positive for Down syndrome, followed by the United Kingdom at 90 percent, the United States at an estimated 85 percent and France at 77 percent.
In the United States, about 19 percent of pregnancies are terminated overall. So why are babies with Down syndrome so disproportionately targeted for abortion? For many, it’s about quality of life: Parents believe, sadly, that a family member with a disability or Down syndrome translates into an unfulfilled or bad life. Societal beliefs reflect this view: Oxford biologist Richard Dawkins once said it would be “immoral” to give birth to a child with Down syndrome if the parents had a choice, as though life with the disorder would be a terrible thing to inflict on a person.
Likewise, in CBS’s story about Iceland, one medical practitioner justified this practice by stating that she is working to “prevent suffering.” Many in the medical community share this same approach, viewing a positive Down syndrome test as a horrible fate, and delivering the diagnosis as such to the families. A number of years ago, a medical student shared with me that his professor told students that they had a “responsibility” to encourage parents to terminate babies who receive a Down syndrome prenatal diagnosis. Likewise, many parents have written about the pressure to abort their children once diagnosed, and medical scholars have called on physicians and other caregivers to radically alter their approach to Down syndrome. The pressure from the medical community to abort Down babies not only counters the purpose of medicine — healing and wholeness — but also is additionally discouragingly difficult for families receiving the news. Further, it suggests a failure of the medical community to consider all available scientific research.
In 2011, Brian Skotko, a Harvard-trained physician and researcher, published a groundbreaking survey, “Self-Perceptions from People With Down Syndrome.” His work revealed that people with Down syndrome have a very high level of satisfaction in their lives and are generally very happy people. Similarly, family members of people with Down syndrome also rank high in levels of personal fulfillment. So not only are people with Down syndrome happy, but they also bring a great deal of happiness to their friends and family members. Indeed, the survey found that 88 percent of siblings of children with Down syndrome feel that they are better people for having had their brothers and sisters; and other studies have found that children with Down syndrome have strong adaptive skills and that their parents tend to divorce less than the parents of children without Down syndrome.
“Bridget Jones” star Sally Phillips has a son with Down syndrome and shared her thoughts on “60 Minutes,” saying that we need to change the way we speak about Down syndrome.
“If you stop thinking of Down syndrome as a disease, then the way you treat mothers is entirely different,” Jones said. “You perhaps wouldn’t say, ‘I’m sorry.’ Breaking the news with the phrase ‘I’m sorry.’ There’s nothing to be sorry about. You’re lucky, actually.”
What parents really need during this sensitive time is support, encouragement and real, scientifically valid information. There are wonderful groups working to help make this a reality, like Jack’s Baskets, founded by Carissa Carroll and inspired by her Down son, Jack. The organization seeks to counter some of the negativity and celebrate children born with Down syndrome by congratulating the family with gifts, support and resources.
These are the types of stories CBS and other networks should be highlighting: ones that will help families find inspiration in celebrating the dignity and joy of their Down children and affirmation in knowing that every life is a precious gift, regardless of the obstacles it may face.