Renate Lindeman writes at Stuff:
Upon delivering my first child 11 years ago, I heard the words “Down syndrome”, and my world collapsed. Visions of children sitting passively in a corner watching life go by, not participating, kept me awake those first nights as a mum.
It didn’t take me long, though, to figure out that my ideas were based on negative, outdated information that had nothing to do with the reality of life with Down syndrome today.
My daughter April is an active, outgoing girl. She’s my nature child, wildly passionate about anything with four legs. Although April uses few words, she’s a master communicator. Through her, I’ve learned that Down syndrome is not the scary, terrible condition it’s made out to be.
But while governments (rightly) ban gender selection, selective abortion continues to be encouraged for children with Down syndrome. In the United States and abroad, screenings are a routine part of healthcare programmes, and the result is the near-elimination of these children.
When pregnant with my daughter Hazel, tests showed she, too, would be born with Down syndrome. I was shocked when an acquaintance asked me why I did not choose abortion – as if she were a mistake that could be easily erased.
Although my personal prejudices have radically changed since the birth of my first daughter with Down syndrome, I realised that negative attitudes about the condition remain deeply rooted.
To many, my children and their cohort are examples of avoidable human suffering, as well as a financial burden. Knowing that individuals look at my daughters this way hurts, but seeing governments and medical professionals worldwide reinforce these prejudices by promoting selection is horrendous.
I think it is entirely a good thing if parents know in advance if the foetus, once born, will have Down syndrome. It allows them to make an informed decision.
That decision would be a very difficult and torturous one. I wouldn’t judge any people in this situation who have to make such a decision.
The unspoken but obvious message is that Down syndrome is something so unworthy that we would not want to wish it for our children or society.
I don’t read it like that. It is one of many conditions that can make life very very difficult for both the future child, and parents. Just like if you knew someone would be born with no limbs.
A 2013 study reports that parents are 2.5 times more likely to have a negative experience on receiving the initial Down syndrome diagnosis than to have a positive one.
Umm, would anyone have a positive experience?
The irony is that for a baby with Down syndrome born today, the outlook has never been better. Medical and social advances have radically changed what it means to live with Down syndrome.
Most people with Down syndrome are included in schools and communities. They live healthier, longer lives, and many adults live independently, have jobs and enjoy a rich social life. In 2013 a young woman with Down syndrome became Spain’s first councillor.
One study showed that the majority of people with Down syndrome report being happy and fulfilled, regardless of their functional skills.
This is why Downpride is calling on the United Nations High Commissioner for Human Rights to stop systematic screening for Down syndrome as part of public-health programmes and to regulate the introduction of prenatal genetic testing – testing should be used to enhance health and human wellbeing instead of discriminating against people based on their genetic predisposition.
I disagree respectfully. I think an informed choice is a useful thing.