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Preserving human dignity.

When I reflect on my 25 years of work as a professional in the field of human services, many significant advances and discoveries come to mind, particularly in the areas of bio-chemical genetics and cytogenetics where I have been most involved. However, I want to share one outstanding event that not only influenced my professional and personal life but also had a direct and indirect impact on the lives of many other people.

While I was training as a pediatric resident at Montreal Children's Hospital, my son Chris was born. My wife and I were initially devastated when we were told that Chris had Down syndrome. As was the custom at that time, we were told that he should not remain with us but should be institutionalized since he would be better off "among his own." We were informed that he would be a "vegetable," a menace to society and a disturbing factor to the lives of his brother and sister; therefore, we would be ill-advised to rear Chris at home.

There was no question in our minds that Chris would stay with us and we would bring him up in our home as we would any of our other children. In retrospect, this was one of the wisest decisions we have ever made. Like other parents who have a child with a developmental disability, we initially encountered the fundamental sorrow and despair and went through a somewhat varied "grieving process." Yet we recovered fast, adjusted fairly rapidly and soon experienced the joy and happiness Chris brought into our family.

Chris influenced my career and had a significant impact on my life. He taught me that persons with developmental disabilities have an intrinsic value of humanity and can contribute to society and perform tasks which previously were never expected of them. He taught me things I never learned in medical school or psychology courses -- special children are no different from other children in their needs, only in the way they express them; they are no different from others in their rights, only in the way they can learn to use them.

Chris taught me that individuals with Down syndrome are persons in their own right, in spite of their limited capacity for academic achievements. He demonstrates every day that persons with Down syndrome are able to learn, have fun, be responsible and dependable and work hard. He let me know that people with Down syndrome have feelings like any other human beings. They have ups and downs and will be happy when things go well and sad when they are offended or seen as second-class citizens.

Most of all, Chris taught me that an IQ score is a demeaning measure of human potential. Quality as a measure of a relationship brings a dimension that quantity cannot match. He taught me that looking upon persons with Down syndrome with respect and dignity is of utmost importance.

Chris also taught me that beyond the material accomplishments and intellectual achievements we value so highly in our culture, there are perhaps more important human qualities for which one can strive. I vividly recall an incident that occurred once while I was visiting Chris' workplace. I saw Chris taking care of a person who was blind, leading him to the dining room, helping him during coffee break and guiding him to the restroom. The kindness and patience displayed by Chris, the trust shown by the other young person and their warm interrelationship were just overwhelming.

The value of a person with Down syndrome is intrinsically rooted in his or her very humanity, in his or her uniqueness as a human being. Individuals with Down syndrome do have intrinsic value and they can reach a point of significant fulfillment of their limited potential. The complete development and satisfaction of the individual as an integrated personality should be the ultimate criteria for all human values.

Paul Wolff, a writer for the TV show Life Goes On, once said, "Persons with Down syndrome in some way reflect our own humanity back at us, and only our limitation causes us to fail to receive the gift. There is a goodness, humanity and magic in these persons that must be protected and never be betrayed."

It is imperative that we as parents, professionals and friends of persons with Down syndrome affirm the absolute fullness of the humanity, of the absolute worth and sanctity of their lives. Persons with Down syndrome should be offered a status that observes their rights and privileges as citizens in a democratic society and preserves human dignity.
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Title Annotation:Hall of Fame
Author:Pueschel, Siegfried M.
Publication:The Exceptional Parent
Date:Apr 1, 1993
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