Friday, January 02, 2009

Eliminating the retarded

Two articles I've read in the past few days have coincided. Amy Julia Becker writes on the First Things blog a response to new prenatal genetic screening for Down Syndrome:

In a letter to the editor of the New York Times, William Motley, a geneticist of Oxford University, writes, “Fighting Down syndrome with prenatal screening does not ‘border on eugenics.’ It is a ‘search-and-destroy mission’ on the disease, not on a category of citizens. . . . ” Similarly, a pediatric cardiologist writes about Down syndrome: “Tremendous social, medical and monetary burdens are inevitable parts of this disorder . . . these (prenatal) tests are invaluable, should be made available to all, and may help individuals possibly avoid a very significant life-changing illness.” Much as Mr. Motley might want to claim that prenatal screening is not about a category of citizens, the practical result of what he advises is indeed to eliminate an entire group of persons.

In a recent collection of essays titled Theology, Disability, and the New Genetics, Hans Reinders states a countervailing claim: “Life is good as it is.” Life is good as it is. It sounds simple. Theologically, it rings true. And yet the vast majority of individuals in our culture choose to terminate a pregnancy if they learn that their baby will be born with a disability. Why? If life is good as it is, why is it considered good by many in our culture to ensure that children with disabilities are not born at all?

As Reinders writes, “many people with disabilities resulting from genetic disorders experience their own lives as good.” I can certainly affirm this statement in the case of our daughter Penny, who has Down syndrome. Penny is nearing her third birthday, as she would proudly tell anyone who cares to ask. Her days consist of playing with blocks and balls and running to the playground, of reading books, of entertaining those around her with proclamations like, “Uh-oh spaghettios!” and “Okey-doke!” She loves her little brother “Wilwum.” She loves bagels and music and school. In general terms, we aren’t concerned about her health or development, and neither is she. Her current challenges include learning to swallow her drool instead of letting it dribble down her chin and learning to tell us before she needs to use the potty. In other words, there is very little that is “not good” about Penny’s life.
Today we hear that Guinness World Records has recognized Bert Holbrook, 80, of Waseca, MN as the world's oldest man with Down Syndrome.

“He understood the excitement” but not the specifics, [Bert's nurse] said.

Foley said Holbrook’s health coincides with that of most 80-year-olds.

“He’s definitely slowing down and tires easily but maintains his same daily routine.”

That includes lunch twice a week at the Waseca Area Senior Citizens Center.
Amy Julia Becker admits the real difficulties and suffering that can accompany a severe disability, but also notices how often the person is viewed as a burden not because of a specific challenge but rather just because they exist in a certain way.

Much of the alienation and stigma people with disabilities experience is a product of societal norms rather than of problems intrinsic to the disabilities themselves. Take the mainstream media. The New York Times reports: “The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49.” Suffer. High risk. Defects. Problems. This reporter goes on to write, “One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer’s disease in people with Down syndrome, potentially saddling parents with another caretaking burden as they themselves age.” Again, the language is telling—saddling, another burden. [...]

The medical establishment demonstrates a similar prejudice. Penny, according to technical language, was born with a birth “defect” or “abnormality.” And she was presumed to be unhealthy, even though we left the hospital on time, two days after she was born. She had scored an eight out of ten on her Apgar test, an echocardiogram indicated that her heart was sound, and she had no other medical issues. Nonetheless, we took with us a list of all the things that might go wrong, including leukemia, celiac disease, thyroid problems, crooked teeth, and spinal instability. None of those, by the way, were even potential immediate concerns. If our social perceptions changed, much of the supposed suffering that comes from disability would be eliminated. (emphasis added)
Around 92% of women who have their child diagnosed with Down syndrome through prenatal screening choose to abort the child. How many lives would be different today had Mr. Holbrook's mother had this option? Would the world be a better place without him, or without people like him? Is the compassion of Bert's caregivers misspent, better to have been given elsewhere to someone who "deserves it"?

I know that it can be very difficult to care for a person with a lifelong disability. But is the solution to engage in a seek-and-destroy mission against those who are created different?

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