Down Syndrome Or Up? By Val Haderlie

In 1866, when John Langdon Down came to a point in his research on the chromosomal disorder Trisomy 21 where he could describe the definitive characteristics of this genetic disorder, he simply named it "Down syndrome" after himself. This naming probably had much less to do with the doctor's ego than it had to do with quickly giving his findings a classification and moving forward with his research work.

Until the designation, Down syndrome, was made late in the eighteenth century, people who had the easily recognized physical characteristics of the anomaly were known, among other less appealing labels, as "mongoloid" because of their distinctly oriental facial features. As late as 1972, World Book Encyclopedia had entries for "mongolism" and "mongoloid" but no mention of Dr. Down or of Down syndrome.

And until just a few decades ago, individuals with Trisomy 21 were generally institutionalized for life. Identified babies and young children were taken from parents to become ward of the state. Doctors would calmly advise the devastated parents, "Forget you have this child. Go on with your life. Have another baby. Enjoy your family." Hearts were broken, human potential was wasted, and hopes were crushed and, over the years, parents and families began to rebel. They raised their cry, "No! This is my baby, the child of my heart. You have no right to put this baby away!" They declared, "We will raise this child as part of our family. Our child deserves and will have a life with us, not the State."

Happily, great strides have been made in offering people with Trisomy 21 lives of dignity and productivity. In today's age of enlightenment, much is being done to recognize the capabilities of citizens with Down syndrome. Inclusive education has allowed most people with Down syndrome to function, learn, and adapt in an environment populated mostly by the severely normal, the mainstream. Such an education offers opportunities to behave in socially acceptable ways and to participate in what peers are doing. This situation in itself is a huge step for those who are challenged with mental disability.

The term Down syndrome has had interesting ramifications which include interpreting it as a sad, hopeless and reticent emotional state combined with a condition of mental disability. Nothing could be further from the truth, as those of you who have close association with individuals with Down syndrome can attest. Admittedly, various ranges of mental disability are a given, but in general, those with Down syndrome are happy, congenial, sociable people.

Although debilitating physical challenges may accompany this syndrome, including heart defects and respiratory weakness, a high percentage of individuals with Down syndrome have the health and mobility to live active and emotionally rewarding lives. With early interventions, many speak intelligibly, perform employment tasks reliably, and interact delightfully in social settings. It's too bad that back in 1866, the researcher wasn't named John Langdon Up, but that's okay. It's not too late to change the name. Hooray for Up syndrome!