Thursday, February 28, 2008

N&O Editorial: Out of Touch on Down Syndrome

Ellen Russel,Director of Advocacy and Chapter Services for The Arc of North Carolina, expresses the feelings that we all share regarding UNC-Chapel Hill's professor Albert Harris' recent class lecture.

Ellen Russell
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.)

1 comment:

KathyR said...

What a wonderful editorial! I, too, could not accept the idea that it was the child w/Ds who 'ruined' the life of the person Prof. Harris spoke of.
I especially liked this comment in your article:
"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?"
That is exactly the point...who can tell what the future will be? Yet, time after time, parents have reported that they have gotten very negative, gloom and doom reports from doctors concerning what life will be like for and with a child w/Ds. Sadly, many parents believe that the doctors know what they are talking about when they say that the quality of life will be poor, and , in the mistaken belief that it would be in the best interests of the child and their family,90% of babies who have a prenatal diagnosis of Down syndrome are terminated.
A petition was started a couple of weeks ago by some parents of children with Ds. The plan is to send the petition to members of Congress on World Down Syndrome Day (3/21) and ask them to read the comments and vote to support the Brownback-Kennedy Prenatally and Postnatally Diagnosed Condition Awareness Act.
We also plan to send it to ACOG, and ask that others send it to their own doctors to let them know that parents expect to be given accurate and up to date information and positive support when they are given a prenatal diagnosis for their baby:
We currently have 1,166 signatures, and the goal is 5,000. Please sign the petition and pass it on to others.
Thank you.
And please tell Emily and Needham 'congratulations'! for me...they are a great inspiration to me, as my son is 9 yrs old.
Thank you for all that you are doing to advocate for people with Ds.