Earlier this year, a British couple caused an uproar after subjecting their daughter to cosmetic surgery. The couple’s daughter, Georgia, was forced to undergo “radical and painful” surgery three times before she was five years old in order to improve her appearance so that she could “fit in” with other students.
Georgia’s flaw? She has Down syndrome.
Late last year, an over-worked Illinois mother used a plastic bag to suffocate her three-year-old daughter, who has autism. And a mother is currently on trial for allegedly drowning her four-year-old daughter in a bathtub because she was ashamed and embarrassed by her daughter’s cerebral palsy.
These anecdotes reflect a culture increasingly un-accepting and intolerant of children with developmental disabilities, who often face brutal and sometimes deadly prejudice. But with a stroke of his pen, President Bush can provide hope to all those who know that with special challenges come unexpected blessings.
THE NUMBERS PAINT a bleak picture. Gallup recently found that more than 6 in 10 Americans do not want a child with an intellectual disability at their child’s school. An opinion survey by Disaboom, a website by and for persons with developmental disabilities, found that 52 percent of respondents would rather die than live with a life-altering disability. Polls suggest public support for abortion ranging from 55 percent to 75 percent when there is a strong likelihood of a mental or physical defect in the child.
According to a 2006 poll by National Opinion Research Center, 70 percent of Americans believe a woman should be able to obtain a legal abortion if there is a strong chance of a “serious defect” in the baby. At least 28 states recognize “wrongful life” or, more commonly, “wrongful birth” lawsuits, in which parents of disabled children are granted compensation, sometimes reaching into millions of dollars, when doctors fail to inform them that their unborn child may be at higher risk of a genetic disorder.
The cultural prejudice against children with genetic conditions was evident in the political reaction to Sarah Palin’s decision not to abort her newborn son, Trig, who has Down syndrome. Nicholas Provenzo of the Center for the Advancement of Capitalism, a libertarian organization, wrote that he was “troubled” by Palin’s decision, because “…it is crucial to reaffirm the morality of aborting a fetus diagnosed with Down syndrome…” According to another blogger, those who lauded Palin’s decision not to abort were guilty of “the worship of retardation.”
The fundamental misconception at the root of such prejudice is that persons with disabilities inevitably lead unhappy lives and overburden their families and society. In short, that the lives of persons with disabilities are lives not worth living.
In a 2007 study published in the American Journal of Obstetrics and Gynecology, Dutch researchers interviewed women who aborted babies because of Down syndrome. Ninety-two percent said they believed the child would never be able to function independently; 90 percent considered the abnormality too severe; 83 percent said they felt the burden for the child was too heavy; and 73 percent considered the burden too heavy for their other children.
But numerous studies have shown that children with developmental disabilities affect their families more positively than negatively, and help cultivate virtues like kindness, empathy and respect for diversity. This helps explain why there are waiting lists of couples ready to adopt children with Down syndrome and other genetic disorders.
PEOPLE WITH DEVELOPMENTAL disabilities challenge our view of the world. Because they require more patience and self-giving, they can be sources of growth, tolerance, joy and hope to those they encounter. Unlocking these powerful truths is especially important in a time when superficial, exploitative and selfish relationships have become all too common. As Simon Barnes, a sportswriter for the Times of London, put it simply in a touching piece about his son with Down syndrome: “human beings are not better off without Down’s syndrome.”
The recognition of these truths was evident when Thomas Vander Woude acted on September 8. When Vander Woude’s son Joseph, who has Down syndrome, fell through a small piece of metal that covered a septic tank in the family’s backyard, Thomas jumped in after him, submerging himself in waste in order to keep his son’s head above the sewage. When rescue workers arrived, after the father and son had been in the tank for 15 to 20 minutes, they pulled the two out, but Vander Woude was unconscious. Joseph survived but his father was pronounced dead at a hospital. Francis Peffley, pastor at Vander Woude’s church, Holy Trinity, told the Washington Post that Vander Woude’s courageous act of self-sacrifice to save his son surprised no one, adding, “They always considered Joseph a wonderful blessing to the family.”
These sentiments are reminiscent of the Palin’s reaction to Trig’s diagnosis. The family released a statement after his birth in which the words “beautiful,” “adored,” “blessed,” “privileged,” “gift” and “unspeakable joy” were used to describe Trig and the effect he had already had on them.
Sadly, up to 90 percent of babies with Down syndrome, cystic fibrosis, spina bifida and other genetic conditions are aborted once their condition is detected. Abortion decisions are often made with little accurate information about what it’s like to raise a child with a developmental disability.
That’s a problem legislators are attempting to alleviate with a new federal law. The Prenatally and Postnatally Diagnosed Conditions Awareness Act would, among other things, expand and develop a national clearinghouse of information for parents of children with disabilities. It would also provide for the expansion of national and local peer-support groups and call for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.
On September 23, the Senate unanimously passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Two days later, the House of Representatives passed the bill. It now awaits the president’s signature to become law.