Will Down Syndrome children disappear?

March 21 is World Down Syndrome Day. Let's celebrate diversity!
Dominic Perrottet | Mar 21 2012 | comment  



When was the last time you saw someone with Down Syndrome?

We see fewer and fewer people with Down Syndrome, although if you look carefully you may see someone with Down’s dancing on stage, running a marathon, winning a BAFTA award, displaying their handiwork at an art exhibition, serving you at the counter, or doing many of the ordinary tasks that we all do every day.

You may see some of them today with their carers celebrating World Down Syndrome Day -- March 21 -- the date being a reference to the fact that the condition is defined by the abnormal presence of three 21st chromosomes.

People with Down Syndrome can have a range of disabilities and abilities. While we have tended to focus on the former, there is an increasing recognition of the latter. The potential in a person with Down Syndrome is seen by parents and carers as no different to the potential inherent in any one of us. By virtue of the inherent dignity of all persons, each living person in the world has his own abilities, goals and dreams; and it is through the love and encouragement of others that this potential is achieved.

One of the marks of a truly humane society is the care that is taken of disadvantaged people. In recent times there has been a flourishing of societies and organisations, governmental and non-governmental, designed for the support of those groups that are culturally, financially, socially, physically or otherwise disadvantaged.

Thanks to the dedication of carers and the work of organisations like Down Syndrome NSW, people with this particular condition are living happier and more fulfilling lives than ever before. The average life expectancy for people with Down Syndrome has increased from 25 in 1980 to nearly 50 today. The support provided to people with the syndrome not only equips them with the skills and opportunities to lead fruitful lives, it also gives them and their families the confidence to seek this goal.

Still, their numbers are dwindling and perhaps in future years there may be no children with Down Syndrome. Should this be hailed as a success?

Around 90 percent of babies suspected to have Down Syndrome are aborted, and perhaps, if some bioethicists had their way, this number could increase with 'after-birth abortion'. In a paper recently published in the Journal of Medical Ethics, the authors argue that a newborn is not conscious of his or her own interests and thus not a person; therefore the destruction of his or her life is morally permissible.

Ironically, the authors were taken aback by the death threats they reportedly received in response. One wonders whether the death threats would have been more acceptable if they were couched in philosophical terms and published in a peer reviewed journal. In their defence, the authors claimed that they were only writing a philosophical article for other bioethicists which I think is supposed to mean it was an exercise in vacuous self-promotion. It is a strange thing to say about one’s own work, but one real world consequence that they do highlight is the fact that many babies with Down Syndrome somehow manage to be born.

I don’t think anyone could accept that the high number of abortions of Down Syndrome babies is justified by the fact that they would not be able to have a worthwhile life. At the very least, we aren’t in a position to judge.

It is difficult for us to fully appreciate the difficulties and challenges faced by parents who have a child with special needs. But those who have lived or are living through the experience are building a world in which these challenges can be met. And many good-willed people in the public and private sector are supporting them. The rest of us just need a change of heart. We should stop and consider the vast abilities, potential and successes of children with Down Syndrome.

If we see the world and all the people in it as a dichotomy between biological normality and biological abnormality, we will never see the sense in celebrating Down Syndrome Day.

Fortunately there are parents, groups, societies and individuals out there with a broader vision of celebrating and encouraging all lives, not just those who were not born with an extra chromosome. They are the ones who truly value diversity; by living it every day. 

They are the ones who can celebrate these precious lives today. Through their inspiration, I hope that one day our society will learn to celebrate these lives too.

Dominic Perrottet is the New South Wales State Member for Castle Hill and is currently the Chair of the NSW Legislative Legal Affairs Committee.



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