terça-feira, 7 de dezembro de 2010

Trissomia 21, aborto e discriminação

Whenever I travel in certain circles with my eight year old daughter Christina, who has Down syndrome, she creates a stir. Heads turn to confirm what people think they saw, and then the light of recognition dawns, as they interiorly affirm, “yes, that was a child with Down syndrome”. The process doesn’t bother me unless the discovery is accompanied by a look of disgust.

I never see that reaction from children; they are merely curious. One time, a couple of preschool brothers, ran to their mom after meeting Christina, exclaiming in animated stage whispers, “Mom, we met a little girl who is Chinese: she looks Chinese and doesn’t speak English!” She tried to shush them, with a worried glance at me, and I calmly assured her that I wasn’t offended since the boys were just trying to make sense of her uniqueness. This may be the first time they ever encountered a child with Down syndrome. They are pretty rare in the US.

Recently, an American psychiatrist traveled to Ireland, and was puzzled by the fact that he saw many more children with Down syndrome in the population than he was accustomed to seeing. He noticed how they were integrated into everyday activities, and marveled at how they were casually accepted in everyday life. Upon investigation into this rare phenomenon, he came upon a surprising fact: abortion is illegal in Ireland, so the 90 per cent abortion rate which has virtually extinguished people with Down elsewhere is not operating. The Irish don’t do a double take for children like Christina. In fact, they are debuting a cartoon on Irish TV whose main character, “Punkie” is a little girl with Down syndrome. It will be included among the ordinary children’s programmes.

Imagine if, overnight, we stopped aborting babies with Down syndrome. Soon, preschools would have the typical number of children with the characteristic almond eyes my daughter has, and children wouldn’t have to tug at their parents’ sleeves when they see her and ask embarrassing questions. Programmes customized to their learning style would flourish, as their growing numbers justified their creation.

When adults with Down syndrome took their place in the world, their accomplishments wouldn’t surprise us and make the news. Like the young man who just scored a 51yard touchdown for his high school football team, which was featured on Fox News, or the young couple, Monica and David, a couple with Down syndrome whose marriage story was made into an award wining documentary. Such events would become too commonplace to amaze us.

Research funding would increase and eventually the health challenges faced by people with Trisomy 21 would be overcome by science. The cure for other, more common diseases such as Alzheimer’s disease and cancer may well be found along the path to pursuing this promising research. Our society would find itself a more welcoming place for those who are genetically diverse, and congratulate itself for overcoming the bigotry of the past, as we did when, two decades ago, the US offered such people access to education with the Individuals with Disabilities Act.

Leticia Velasquez is a co-founder of Keep Infants with Down Syndrome. She writes from Connecticut.

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