Down Syndrome: The Paradox
There has been tremendous progress in overall life expectancy, IQ levels, and many other quality of life measures for persons with Down Syndrome over the last 30 years. The Executive Director of the Global Down Syndrome Foundation, Michelle Whitten, writes about “The Story of Two Syndromes” on their website. The “Old Syndrome”, referencing before the 1980’s in the U.S., was characterized by institutionalization, limited access to education, marginalized healthcare, and short life spans. The average life expectancy for a person with Down Syndrome in the 1980’s was only 28 years old. Fortunately, public policy and litigation in the 1970’s and going forward started a significant shift away from institutional services and toward community living, improved health care, and educational access.
The “New Syndrome” ultimately resulted in a dramatic improvement in life span such that today’s average life span for individuals with Down Syndrome is up to 60 years old—more than double that of just thirty years ago. Also, almost all people with Down Syndrome now live at home and remarkably, their average IQ scores have increased 20 points. Perhaps, most importantly, people with Down Syndrome more fully access and enjoy all aspects of life including education, work, play, and relationships.
At the same time that we have observed this overall improvement in quality of life for those with Down Syndrome, there is still an alarming rate of abortions associated with the detection of Down’s in utero. George Will, Washington Post columnist, wrote in a recent Sunday editorial about this tragedy. He referenced in particular a recent French Court ruling that disallowed a video entitled, “Dear Future Mom.” This video depicted happy Down Syndrome children, but was deemed likely to “disturb the conscience of women who had lawfully made different life choices.” All of us who are privileged to know and work with people with Down Syndrome know beyond a shadow of doubt that they give happiness to others in abundance and certainly have an internal capacity for much individual happiness. Therefore, we need to continue to educate all as to the true potential of persons with Down Syndrome and help insure human and civil rights for individuals in the U.S. and throughout the world, including France.