Out of touch on Down syndrome

RALEIGH -- A recent news story quoted a UNC-Chapel Hill professor's lecture notes as saying "In my opinion, the moral thing for older women to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does." I know Albert Harris has heard from many angry family members. At The Arc of North Carolina, we, too, have been contacted by people who are angry, disturbed and repulsed that a man of science and professorial influence would make such a statement and assign to it a moral imperative. Although Harris suggests that he made this statement to encourage discussion, there is no indication that he asked the students to react. In the apparent absence of soliciting comment, what he said could be perceived as professional wisdom.

Harris was quoted as saying that he knows "somebody who had a child like this and it ruined their life." This singular experience clearly had such a profound personal effect that he feels compelled to make a moral judgment on the extinction of all fetuses whose chromosome counts exceed the norm.

The Arc's mission and values, my recent e-mails and my personal experience would indicate that Harris is out of touch with several decades of civil and social activism for the rights of people with disabilities. The struggle for acceptance, respect, adequate services and supports goes on.

Perhaps that family could never access what it needed in the educational, social, day-care, employment or medical systems. Perhaps it didn't have the encouragement of family, neighbors and friends. It is impossible for me to accept that it was the child who ruined their lives. I can give a hundred personal examples of families whose lives have flourished and benefited from the experience of having a child with Down syndrome.

Those of us who work in this field are painfully aware of a time when people with Down syndrome and other developmental disabilities were warehoused in horrible places, relegated to existences of neglect and squalor. The decades of reform that followed this national shame led to an emphasis on higher developmental and social expectations. Lo and behold, given humane treatment, respect for individual preferences, and the belief that everyone can succeed, people excelled and took their places in the community.

Experiences, options, participation, inclusion with nondisabled peers and, yes, common sense have opened doors to real lives for people with disabilities. Today families seek and demand educational, recreational, vocational, residential options in the community for their family members with Down syndrome. They do so because real life makes a difference.

Twenty-nine years ago, my second child was born. An hour after the exciting birth, my husband and I were informed that Emily had Down syndrome. Gone, we thought, were our dreams and hopes for this darling child. How would we make those calls to the grandparents? What was going to happen to us?

On Emily's second day of life, we stood peering through the hospital nursery window. My husband said, "What does anyone know about any of these babies and what their futures will be?"

As parents we all have dreams and hopes. A diagnosis at birth made me think I had to alter my dreams. But the truth is that as life goes on all our children have experiences and influences, good and bad that shape their lives and affect their families. In the end, we all want our children to be happy, successful, kind, respected, loving and loved human beings. None of those things requires a particular number of chromosomes.

Emily was married four months ago to a wonderful man. Our family and friends helped celebrate this event as they have celebrated her life.

(Ellen Russell is director of Advocacy & Chapter Support at The Arc of North Carolina.)