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To Abort or Not in a Down Syndrome Pregnancy? A TC Student Opines in Newsday

More than 90 percent of all Down syndrome pregnancies are terminated. Valerie Karr, who studies international perspectives on the rights of persons with disabilities, argues we are losing something very precious.

BY VALERIE KARR | Valerie Karr, of Sea Cliff, is a PhD candidate at Teachers College, Columbia University, who studies international perspectives on the rights of persons with disabilities.

Last weekend at my favorite ice cream shop, I met an adorable 4-year-old boy named Sully. He had bright blue, inquisitive eyes, a happy smile and, judging from his telltale facial features, Down syndrome.

Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted. I don't normally get overly exercised about the issue of abortion, but this number struck me as I looked at Sully. With only 8 percent of prospective Down parents choosing to have their child, Sully may grow up with no peers to interact with in his life. Somehow, we are saying the lives of children with Down mean less than those of so-called normal children.

Admittedly, the economic costs of raising children with Down can be onerous. The emotional strain can cause rifts between parents. There can be serious medical complications. As a matter of fact, in a survey conducted by Brian Skotko at Harvard Medical School, 3,000 mothers receiving the news that their child would have Down syndrome reported that physicians expressed negative views about them continuing their pregnancies.

Something profound and disturbing lies at the heart of this dilemma. If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?

Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities. The prevalence of children born with Down syndrome has not actually seen a dramatic decrease in the United States (it is approximately 1 in 733), which means that many pregnant women are not getting these tests. But prenatal testing has become safer and more common among younger women, and now more than 70 percent are undergoing screening. So the question is what will these women, parents and doctors do, as information about unborn children's disabilities becomes more readily available? At the current rate, we will eventually exterminate children with Down from society.

And the world will miss out on the opportunity to experience these wonderful and giving members of our communities. Yes, often many parents of children with Down syndrome experience grief and shock when given the diagnosis, but upon follow-up, parents expound on the joys and happiness their child has brought to the family, and the optimism they feel for their child's future. Children with Down syndrome play with peers, participate in sports programs, graduate from high school, and can live independent lives in the community with proper supports.

Today, there are waiting lists of parents wanting to adopt children with Down syndrome in the United States and internationally. The National Down Syndrome Society has been working closely with health-care professionals to make all aspects of having a child with Down syndrome - including the positive ones - known to parents when they are presented with the diagnosis.

Down syndrome is not the only condition that is targeted in the womb. Recently a French Genetics Lab identified a region on chromosome 16 that is apparently linked to autism. This study immediately raised questions about the availability of prenatal testing for autism. If the Down syndrome figures are any indication, this could represent the next wave in disability-related abortion.

Such abortions raise painful questions normally relegated to the religious or philosophical spheres. Do we want only "perfect" children? Does society value "normal" people more than those with disabilities? Is the unalienable equality inherent in all humans a fraud?

Ironically, the world seems to have legislated away discrimination against people with disabilities, from the landmark Americans with Disabilities Act to the recent UN Convention on Rights of Persons with Disabilities. We seem to have come a long way, but maybe it's not so far at all. The Eugenics movement in the early 1900s was a precursor to Nazi Germany's genocide of persons with disabilities. Ninety-two percent is a virtual extermination, sanctioned by doctors and parents. It's a number that reflects the broader society's attitude toward persons with disabilities.

We have resolved in the courts, for the time being, the issue of abortion. It remains a woman's choice. But that choice is demeaned if communities devalue the life of its disabled. The vast majority of these children are handicapped in the womb, condemned by their disability to disposable status despite the fact that children like Sully can live long, happy lives that enrich everyone they touch. Awareness of the equality of all children - including children with disabilities - is the first step to legitimizing a woman's right to true choice and to the broader acceptance in society for the rights of persons with disabilities.

 

Published Thursday, Jul. 10, 2008

To Abort or Not in a Down Syndrome Pregnancy? A TC Student Opines in Newsday

BY VALERIE KARR | Valerie Karr, of Sea Cliff, is a PhD candidate at Teachers College, Columbia University, who studies international perspectives on the rights of persons with disabilities.

Last weekend at my favorite ice cream shop, I met an adorable 4-year-old boy named Sully. He had bright blue, inquisitive eyes, a happy smile and, judging from his telltale facial features, Down syndrome.

Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted. I don't normally get overly exercised about the issue of abortion, but this number struck me as I looked at Sully. With only 8 percent of prospective Down parents choosing to have their child, Sully may grow up with no peers to interact with in his life. Somehow, we are saying the lives of children with Down mean less than those of so-called normal children.

Admittedly, the economic costs of raising children with Down can be onerous. The emotional strain can cause rifts between parents. There can be serious medical complications. As a matter of fact, in a survey conducted by Brian Skotko at Harvard Medical School, 3,000 mothers receiving the news that their child would have Down syndrome reported that physicians expressed negative views about them continuing their pregnancies.

Something profound and disturbing lies at the heart of this dilemma. If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?

Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities. The prevalence of children born with Down syndrome has not actually seen a dramatic decrease in the United States (it is approximately 1 in 733), which means that many pregnant women are not getting these tests. But prenatal testing has become safer and more common among younger women, and now more than 70 percent are undergoing screening. So the question is what will these women, parents and doctors do, as information about unborn children's disabilities becomes more readily available? At the current rate, we will eventually exterminate children with Down from society.

And the world will miss out on the opportunity to experience these wonderful and giving members of our communities. Yes, often many parents of children with Down syndrome experience grief and shock when given the diagnosis, but upon follow-up, parents expound on the joys and happiness their child has brought to the family, and the optimism they feel for their child's future. Children with Down syndrome play with peers, participate in sports programs, graduate from high school, and can live independent lives in the community with proper supports.

Today, there are waiting lists of parents wanting to adopt children with Down syndrome in the United States and internationally. The National Down Syndrome Society has been working closely with health-care professionals to make all aspects of having a child with Down syndrome - including the positive ones - known to parents when they are presented with the diagnosis.

Down syndrome is not the only condition that is targeted in the womb. Recently a French Genetics Lab identified a region on chromosome 16 that is apparently linked to autism. This study immediately raised questions about the availability of prenatal testing for autism. If the Down syndrome figures are any indication, this could represent the next wave in disability-related abortion.

Such abortions raise painful questions normally relegated to the religious or philosophical spheres. Do we want only "perfect" children? Does society value "normal" people more than those with disabilities? Is the unalienable equality inherent in all humans a fraud?

Ironically, the world seems to have legislated away discrimination against people with disabilities, from the landmark Americans with Disabilities Act to the recent UN Convention on Rights of Persons with Disabilities. We seem to have come a long way, but maybe it's not so far at all. The Eugenics movement in the early 1900s was a precursor to Nazi Germany's genocide of persons with disabilities. Ninety-two percent is a virtual extermination, sanctioned by doctors and parents. It's a number that reflects the broader society's attitude toward persons with disabilities.

We have resolved in the courts, for the time being, the issue of abortion. It remains a woman's choice. But that choice is demeaned if communities devalue the life of its disabled. The vast majority of these children are handicapped in the womb, condemned by their disability to disposable status despite the fact that children like Sully can live long, happy lives that enrich everyone they touch. Awareness of the equality of all children - including children with disabilities - is the first step to legitimizing a woman's right to true choice and to the broader acceptance in society for the rights of persons with disabilities.

 

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