Herron: Down syndrome an oft misunderstood disorder

By Mason Herron / Columnist

published: Tue, 15 Sep, 2009

When we reflect upon the progress humanity has made, we often reach two conclusions: praise for the progress and the heroes that brought it and the realization of how much more progress must be made. Historically speaking, there are a plethora of examples to this law: colonialism, religious tolerance, civil rights, gender equality, etc.

You get the idea. Perhaps, then, we might consider these reflections and apply them to an issue of today that might not be as eminent but is nonetheless in dire need of grave reflection and consideration, and that is the way we perceive the nature of Down syndrome.

Down syndrome — also referred to as trisomy 21 — is a disorder brought on by the presence of an additional chromosome in an individual’s genes. People who have the disorder are typically developmentally disabled and display below-average cognitive ability. Physical characteristics include low muscle tone, almond-shaped eyes, a flat nasal bridge, a protruding tongue and a number of other features. Each individual might experience these characteristics with different intensities and variability.
Down syndrome occurs in one of every 800 births, and the risk of conceiving a child with Down syndrome increases as women grow older, with women older than 35 having 80 percent of Down syndrome births.

Our understanding of Down syndrome — and the way it was portrayed — was, until recently, simple at best and cruel at worst. The disorder was popularly referred to as “mongolism” (in reference to a Mongoloid race), and the term still creeps its way into modern medical texts. Worse, however, was the implementation of a policy in the early 20th century by 33 of 48 states that mandated that individuals with Down syndrome be forced to undergo involuntary sterilization, and many were murdered by Nazi Germany’s “Action T4” euthanasia program.

This history reveals not only a lack of ethics in regard to the mentally disabled, but also a severe underestimation of the capabilities of those who are born with Down syndrome. A generation after many of those with Down syndrome would have been institutionalized, many are able to happily live and work independently. Many are also perfectly literate, and I hope I need not point out the remarkable athletic talent and leadership displayed at Special Olympics events across the country.

But then one reads this: “It is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome ... Because a person afflicted with Down syndrome is only capable of being marginally productive (if at all),” Nicholas Provenzo, founder of the Center for the Advancement of Capitalism, said.

Perhaps no one has said it better than online blogger, Diana Hsieh. “[Christians] would regard abortion as a moral way to prevent the infliction of a miserable, degraded life on the person that will emerge from the womb. Instead, they want to create more mentally defective and perpetually dependent children by outlawing abortion.”

A 2002 study revealed that 91 to 93 percent of Down syndrome pregnancies were intentionally terminated. Many potential parents are unwilling to take on the burdens and uncertainties of raising a disabled child. However, these fears are often exacerbated by a misunderstanding of Down syndrome. According to a congressional testimony by Dr. Brian Skotko, mothers included in his study that had been diagnosed as having a Down syndrome pregnancy “reported that doctors did not tell them about the positive potential of people with Down syndrome, nor did they feel like they received enough up-to-date information or contact information for parent support groups.”

Efforts have been made to rectify this concern. The bi-partisan Prenatally and Postnatally Diagnosed Conditions Awareness Act, signed by President Bush in October 2008, is a bill that seeks to inform and educate the public about Down syndrome and other prenatally or postnatally diagnosed disorders. Fortunately, government has not been the only instrument used toward the proliferation of information regarding Down syndrome. Many organizations, including the National Association for Down Syndrome, the National Down Syndrome Society and the Down Syndrome Association of Pittsburgh, have done work to educate others about this condition, as well.

It seems our immediate impressions of people often get the best of us. In the eyes of some, those with Down syndrome live an incomplete life, an unfair life. Yet we must realize this is not always the case and that those with Down syndrome shouldn’t be defined by their disorder. By willfully changing our perceptions on this particular issue, we take a step toward contributing to the progress of humanity as a whole.

E-mail Mason at mph20@pitt.edu.