Today, March 21st, is World Down Syndrome Day. A day chosen for its numeric representation of the cause for Down syndrome: 3/21 representing the triplicate of the 21st Chromosome. It is a day to raise awareness about those living with the condition. More should be aware of the positive force that those with Down syndrome are in this world.
Unfortunately, due to society’s still prevailing view of those with disabilities, the association with Down syndrome is something to be avoided. The marketing of prenatal genetic testing emphasizes this: expectant mothers should undergo testing to be reassured that they are not having a child with Down syndrome.
However, it wasn’t always this way.
The earliest depictions of Down syndrome do not suggest people to be ostracized, but venerated. Carved images from the Olmec civilization depict what appear to be children with Down syndrome in playful poses. The earliest known depiction in Western art is in a piece entitled “The adoration of the Christ child,” where amongst the adorers are individuals who appear to have Down syndrome.
But, this was before the condition became labeled.
In the 1860’s, John Langdon Down published his paper describing a group of residents at the Asylum for Idiots overwhich he was director. He described the common physical and mental characteristics associated with the condition and named it “Mongolian Idiocy.” “Idiocy” for the associated intellectual disability and “Mongolian” for what, in Down’s view, were physical characteristics evocative of those from Mongolia, who Down considered a race that was a regression from human evolution.
In the ensuing decades, Francis Galton, a cousin of Charles Darwin, the man most associated with the theory of evolution, wrote and advocated for the notion of “eugenics”: of improving human stock through encouraging the “best” of mankind to breed with one another. Conversely, the negative side of eugenics was to reduce or eliminate those considered poorly born, with those considered “feeble-minded” being the first to be forcibly sterilized and euthanized.
With the world awakening to the horrors of the Holocaust, mass sterilization and euthanasia could no longer be publicly supported. So, instead, those considered feeble-minded and lesser born were warehoused in institutions. It became standard medical practice to advise parents not to take their children born with Down syndrome home; rather, forget that they were ever born and go home and try for another, unaffected, child.
This practice persisted hundred years after Down’s labeling of the condition until some investigative reporters exposed the horrors of the institutions. In response came a flurry of legal acts to ensure accommodation in the community, access to public education, and supportive employment.
With the cycle of eliminating and then segregating those with Down syndrome broken by sequential exposures of those atrocities, these lives were first given an opportunity to flourish as an expected outcome.
Children were brought home and welcomed into families (by birth or by adoption). They attended their community schools and sat alongside other students in the classroom. They completed their public education and began to enter the workforce while living in their communities, being seen moving about by their neighbors, community leaders, and friends. Some even became famous, appearing on popular television series or as the main character in a book adapted into a movie. Now barely a week can pass without an online social media post about an individual with Down syndrome being recognized by their peers, by their employer, by an elected official for being positive role models to others.
But just as the cycle of elimination and segregation was being broken, medical technology developed a means by which these lives with Down syndrome could be avoided via prenatal testing and selective abortion.
This technology began in the 1960’s, became generally accepted and performed in the 1970’s and 1980’s for expectant mothers over the age of 35. Then, in 2005, a government-funded research study ominously entitled the First And Second Trimester Evaluation of Risk (FASTER) study recognized a new method, nuchal translucency combined testing, which could be performed in the first trimester. Two years later, the American College of Obstetricians & Gynecologists removed the age cut-off of 35, recommending that all expectant women be offered prenatal genetic testing for Down syndrome and other aneuploidies.
Just four years after the medical guidelines changed, an even newer form of prenatal genetic testing arrived: cell free DNA screening. Promised (and marketed) as Safe. Accurate. Certain. the new screening hyped its “99% detection rate”. Unlike the previous testing methods, cell free DNA screening was developed by for-profit laboratories outside the regulation of the FDA. In a quest to gain market share, the labs engaged in massive marketing efforts to persuade expectant mothers they should avoid the risk of Down syndrome and seek the reassurance that their expectant child did not have Down syndrome.
Some of these labs are now engaged in intensive lobbying efforts to convince state officials to expand Medicaid coverage to covering their tests. Five states already are (Florida, Minnesota, Ohio, Pennsylvania, Ohio, and Virginia).
The investment of scarce public and private health care insurance dollars are justified by representatives of the laboratories and by certain state programs by claiming the costs of the testing of all expectant mothers–99% of which are not carrying a child with Down syndrome–is justified by the amount of public dollars “saved” by “preventing” the birth of children with Down syndrome. California has had a publicly-subsidized prenatal testing program for decades. Researchers reporting on the testing have been explicit that the purpose of the program is to reduce the number of lives born with Down syndrome.
And so, on the macro-level of public policy and health insurance dollars, lives with Down syndrome remain something to be avoided, reduced, because they are costs, burdens to the public systems. Systems that are required by law to support these lives so that they may flourish.
These scare tactics of the testing labs marketing divisions and cold cost-benefit analysis to justify millions of dollars of public healthcare funds hearkens back to Down’s claim of evolutionary regression, Galton’s desire for only “well-bred” children being born, the bigotry that led to the segregation of individuals with Down syndrome. It remains wrong and should be exposed as such.
Because the truth is: lives with Down syndrome make this world better.
Study, after study, after study report what those who have relationships with individuals with Down syndrome know: if you know someone with Down syndrome, you have a better, more positive outlook of what living with the condition is like. If you have a family member with Down syndrome, they are loved and having them in your family you say has made you a better person. Studies have found including individuals with disabilities in the classroom not only benefits the student with disability, but all students. Similarly, hiring someone with disabilities has been found to improve the work environment and they are some of the most reliable employees.
In my personal experience, as a father, past president of my local support organization, and active on the national level, meeting many people with Down syndrome has had the same effect on me as Cam Brasington, a genetic counselor, who described her reaction: they have charmed me. I’ve heard someone else describe those with Down syndrome as “guileless,” meaning innocent and without deception. While this is not universally true for my daughter when she can be manipulative to get what she wants, in a social setting, most of us are usually greeted by our friends with Down syndrome openly, with our friends sharing candidly how they are feeling and what they are thinking. Being a practicing attorney, I can say this does not apply universally to the rest of us, no matter how well-born a person may be considered or educated.
Down syndrome is a naturally occurring part of the human condition. It has been around as long as there has been a human condition. Despite the efforts of several countries to eliminate lives with Down syndrome so they can trumpet that they are “Down syndrome free,” these lives still continue to join us in this world.
This stubborn persistence of a condition most associate with being simple and slow, but the lived experience has shown improves our families, our classrooms, our work life, and our lives in general should give everyone pause to stop and wonder: why? From a position of humility, it seems that there must be a reason that these pregnancies naturally occur, these incredibly cute babies join us, these warm and funny individuals grow up and contribute to our world.
Rather than seek to profit off the elimination of a condition shown to improve our world, let us instead hope for an awakening on this and every other World Down Syndrome Day to the truth that lives with Down syndrome are a positive force in this world. Let us welcome and support them, just as we would want to be.
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