Down syndrome kids need support after they're born - but also before
Last Saturday, March 21, was World Down Syndrome Day. Down Syndrome, also called Trisomy-21, occurs when people have a third copy of their 21st chromosome - hence the choice of March 21. In 2011 the United Nations passed a resolution supporting the celebration and declaring grandiloquently that:
People with Down syndrome, on an equal basis with other people, must be able to enjoy full and equal rights, both as children and adults with 'opportunities' and 'choices'.
So making choices is the theme of a series of very touching and entertaining YouTube interviews with Down Syndrome people around the world, from Jordan and the US to Bosnia-Herzogovina to Brazil which were released last week.
The organisers of the Day, a British charity called Down Syndrome International , say that people with Down Syndrome suffer from prejudice and are often denied the right to participate in civic life. They are "abandoned, subjected to abuse and segregated from their communities" and discriminated against in education and health. It is difficult for them to live independently and to be included in the community. They are often not allowed to marry, vote or be elected to public office.
What's odd about this complaint is that the biggest discrimination is hardly mentioned - the right to participate in life, period. Statistics vary, but an estimated 90 percent of women who use prenatal testing and learn that they are pregnant with a Down Syndrome Child choose to abort it.
Why? Because they think that life with a Down syndrome child will be hell. Because their doctors don't support them. Because their family doesn't support them. Because puffed-up windbags like Richard Dawkins post tweets like this:
But this is not true.
Research on life with Down syndrome paints a very positive picture. In A 2011 article in the American Journal of Medical Genetics , Dr Brian Skotko, of Children's Hospital Boston, reported that "The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride".
Of the 2,044 parents who were interviewed 79 percent felt their outlook on life was more positive because of them; only 5 percent felt embarrassed by them; and only 4 percent regretted having them. Similarly, nearly all siblings regarded their relationship with a brother or sister with Down syndrome as positive and enhancing. Of older siblings, 88 percent felt that the experience had made them better people.
To be fair, DSI must feel that it is walking a tightrope. On the one hand, it wants to protect Down syndrome kids; on the other, it risks losing support if it opposes abortion. DSI's position on prenatal testing reflects the dilemma: there is a good side to Downs, but in the end it's a mother's choice.
DSi does not consider Down syndrome in itself a reason for termination. People with Down syndrome can and do lead full and rewarding lives and contribute as valued and equal members of their communities.
Unfortunately, increasingly accurate prenatal testing services will ensure that fewer and fewer Down Syndrome Children enter the world, with the connivance of governments and doctors. In practice, the "choice" which Down Syndrome advocates are supporting is, sadly, the choice that adults make when they abort disabled children.
The generous and self-sacrificing work of Down Syndrome International to defend these children after they are born must be acknowledged. But even more important is the battle to defend them before they are born.
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