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Thursday, August 14, 2008

Some Startling & Interesting History About Down syndrome

This is an excerpt from an article I read this morning. I've included the link to its entirety on the side bar.

Not “Just a Word”
August 13th, 2008 by Leticia Velasquez

The meaning of a word bears the weight of generations past, and this decides whether a word, which once may have been merely descriptive, is now hurtful and in what context. Generations of African American leaders have labored at this mammoth task, informing society that the “n-word” will no longer be permitted in civil society. For those who care about the 3% of the population with intellectual disabilities, who are offended by the “r-word”, I will briefly outline Western society’s shameful treatment of individuals with Down syndrome, who are the most easily recognizable individuals with intellectual disabilities, and therefore bear the brunt of this marginalization.

Dr. John Langdon Down, brother-in-law of Charles Darwin, first classified those with Down syndrome as members of a separate race, as he strove to improve the treatment of the disabled who were then called idiots. He assumed that their almond-shaped eyes meant that they were from the Mongolian race and, in an 1866 paper, he coined the unfortunate term, “Mongolian idiocy”. The less offensive term “Down syndrome” emerges from the work of the editor of the British medical journal the Lancet in 1961.

In the Darwinian economy of survival of the fittest only the best adapted should survive to reproduce thus improving the overall species. This was the credo of the worldwide Eugenics
Movement in the early 20th Century which, in the USA, fought hard to establish compulsory sterilization programs of the “feeble minded”. Eventually 27 states established sterilization programs. In the landmark Supreme Court decision in Buck v Bell concerning a woman, Carrie Buck, who was forcibly sterilized, Justice Oliver Wendell Holmes proclaimed in the 8-1 majority opinion, “three generations of imbeciles are enough”. At the time, “imbecile” was a medical term used to describe the retarded, but Holmes’ use of it smacks of contempt. He was not alone. The US sterilization program of the retarded continued for three decades, claiming 60,000 victims.

The eugenicists in Nazi Germany convinced families of the mentally retarded to send them to institutions, where they were classified as “useless eaters” and under the T-4 program the retarded were the first Germans to be shipped to the gas chambers. Being labeled “retarded” was a death sentence in Germany. Back in the US, pressure mounted to eliminate the sterilization programs; however, retarded children were left to languish in institutions where they received little more than the most basic necessities. Their families seldom visited them, and many, like playwright Arthur Miller, went so far as to deny their existence out of shame.

The cloud of shame began to lift when, in 1959, French geneticist Dr. Jerome Lejeune discovered the cause of Down syndrome was Trisomy 21, an extra 21st chromosome. In France, Trisomy 21 was considered contagious, a result of the mother’s syphilis, so that individuals with Down syndrome were avoided and shamed. Lejuene spent the next four decades advocating for individuals with Down syndrome to be treated with kindness and dignity, as he sought a cure.

Things began to improve for the mentally disabled; in the 1980’s in the US they began to be considered worthy to receive medical treatment for their congenital heart anomalies, thus doubling their life expectancy from 25 to 50. The 1990 enactment of the Americans with Disablilities Act set standards against discrimination of individuals with mental retardation, and little by little, advocacy groups such as the National Down Syndrome Congress were successful in changing society’s view that people with Down syndrome were a burden. Educational programs such as Early Intervention began to improve their cognitive skills and academic performance, as many children were accepted for the first time in public schools.

In the 1990’s Chris Burke, an actor with Down syndrome, had a popular TV series, “Life Goes On”, designed around him and doctors could tell expectant mothers whose baby had Trisomy 21, “You know Corky from that TV show? Your child will be like him.” In the past decade, individuals with Down syndrome have continued to break stereotypes; go to college, get married, obtain driver’s licenses, and live independently. A good-natured film about a man who tries to fake an intellectual disability to win the Special Olympics, The Ringer, shows how the participants taught him to respect their dignity and join them in friendship.
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Leticia Velasquez is a wife and homeschooling mother of three daughters. She is a free lance writer whose articles have appeared in Faith and Family and Celebrate Life magazines. A film critic for Mercatornet, Leticia has recently helped create a new blog called Catholic Media Review.

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