of the cheerier stories to emerge from the World Cup in South Africa concerned
the taciturn coach of the winning side, Spain. Vicente del Bosque’s 21-year-old
second son Alvaro has Down syndrome. But the coach is immensely proud of him —
even though Alvaro has been highly critical of some of his decisions. Spanish
Prime Minister Jose Luis Zapatero made sure that Alvaro was invited to his
official reception for the team to hold the World Cup trophy aloft.
first we cried a lot,” del
Bosque says about the days after Alvaro’s birth, “but now when I
look back I think, we were so foolish.”
coach’s reaction is quite typical of the parents of Down syndrome
children. Despite significant
health problems, they normally have a placid, loving disposition which often
brings much consolation to parents. Some even say that their Down syndrome
child is easier to raise than their other children. As a Harvard University
Brian Skotko, puts it, “Parents who have children with DS have
already found much richness in life with an extra chromosome.”
why I found this
week’s news from Melbourne so gut-wrenching:
“Two Victorian couples are suing doctors
for failing to diagnose Down syndrome in their unborn babies, denying them the
chance to terminate the pregnancies. The couples are claiming unspecified
damages for economic loss, continuing costs of care of the children, and
‘psychiatric injury’. Both say they would have aborted their pregnancies had
they been told their children would be born with Down syndrome.”
affairs shows interviewed the parents. They complained about how very hard it
is to look after these children, and that they really would have rather aborted
the babies had they been given the chance. So now they are seeking damages for
their “psychiatric injury” and suffering.
is crassly selfish, but the unfortunate parents are probably just echoing what
they heard from doctors. Dr
Skotko reported in the Archives of Disease in Childhood last year
that few of them know much about life with Down syndrome. Often they put subtle
or not-so-subtle pressure on pregnant women to abort affected foetuses. Many
women told him that their physicians had provided them with incomplete,
inaccurate, and oftentimes offensive information about the condition. He found
that women were being told that Down syndrome was a too great a burden for the
child to bear.
must say that I cannot summon up much sympathy for these parents and even less
for their demand for damages. Do special needs children present challenges?
Yes, absolutely. But guess what? Anything worthwhile is tough going.
sacrifice is the name of the game for parents. In fact, every single child is a
huge handful. They place enormous demands on you for a good 20 years — and
continue to do so long after they leave the nest.
only will they cost you at least a quarter of a million dollars between ages 0
to 18, but they will cost you emotionally, physically, psychologically and
mentally. Loving another person is costly.
love discounts the tremendous costs. Any parent worth his or her salt will
gladly make a dozen major sacrifices a day out of love for their offspring.
true love is self-giving, not self-taking. To love another person is to give
away part of yourself, to become vulnerable, to take risks, and to be willing
to hurt. If you do not want to hurt, then do not love. A parent’s love may be
among the world’s greatest love, because it may hurt the most and cost the
most. But love happily embraces such hurts, sacrifices and burdens.
born with physical or mental incapacities are obviously going to be somewhat
more of a handful. But they are all still beautiful sons and daughters who
deserve to be loved. They do not deserve the guilt trip put upon them by
parents who complain about their very existence, their very right to life.
two couples in Melbourne are not alone. We live in an age of selfishness and
the deification of self. Anything that will inconvenience us, cost us, or weary
us can be jettisoned.
we weary of the toaster, we chuck it out and get a new one. When the plasma TV
begins to play up, we ditch it for a newer, bigger model. And when the children
we bring into the world are not perfect, it seems natural to sue somebody.
we all want the best for our children and for our loved ones, the quest for the
perfect baby – or the perfect anything – is a futile and ultimately selfish
quest. Life offers no guarantees, and love is developed and enhanced in the
furnaces of affliction, hardship and trials.
talk seems quaint today, even offensive. We demand perfection. Designer babies
are now a part of this demand for only the best, the most convenient, and the
most hassle-free. If we don’t get a free ride through life, we will find
someone or something to blame – and to issue a lawsuit against.
for perfect people is not new. It has been around for some time now. Indeed, we
have a term for it: eugenics. The Nazis gave it a bad name by putting the
government in charge. But after lurking in the basement for the last 40 years,
eugenics is back, rebranded as “reproductive choice”. In its privatised form it
has been highly successful.
the moment, about 92 percent of women in advanced countries abort a Down
syndrome child after it has been detected. Dr Skotko even predicts that they
could become “extinct”.
the disappearance of Down syndrome children from our society is an authentic
tragedy. We need people who challenge our selfish desire for a no-hassles
existence. We need people who show that “a caring society”, “a
non-discriminatory society”, “a democratic society” are not just windy
raising Down syndrome children presents challenges, but as President Barack
Obama declared in his inauguration
speech, challenges make us great:
“What is required of us now is a new era
of responsibility — a recognition… that we have duties to ourselves, our
nation and the world; duties that we do not grudgingly accept, but rather seize
gladly, firm in the knowledge that there is nothing so satisfying to the
spirit, so defining of our character than giving our all to a difficult task.”
doesn’t someone frame these words and send them to every obstetrician in
Bill Muehlenberg is a lecturer in
ethics and philosophy at several Melbourne theological colleges and a PhD
candidate at Deakin University.