The challenge of imperfection

Why are we exterminating Down syndrome children if they can bring so much joy?
Bill Muehlenberg | Jul 22 2010 | comment  

Zapatero, Spain's World Cup team, and Alvaro del Bosque

One 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.

“At 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.”

The 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 expert, Dr Brian Skotko, puts it, “Parents who have children with DS have already found much richness in life with an extra chromosome.”

That’s 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.”

Current 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.

This 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.

I 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.

Indeed, 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.

Not 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.

Real 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.

All 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.

Those 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.

These 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.

When 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.

While 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.

Such 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.

The quest 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. 

At 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”.

But 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 platitudes.

Sure, 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."

Why doesn’t someone frame these words and send them to every obstetrician in Australia?

Bill Muehlenberg is a lecturer in ethics and philosophy at several Melbourne theological colleges and a PhD candidate at Deakin University.

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