By Daniel Allott on 10.10.08 @ 12:07AM
The cultural prejudice against children with developmental
disabilities is being seriously challenged.
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.
topics:
Sarah Palin, Sports, Abortion, Law