Long-term readers (hi Mum!) may remember an exchange of views played out on this blog last year with a blogger who set up a blog called End Down Syndrome in a misguided attempt to persuade people to terminate fetuses with Down’s syndrome based on his belief that the primary reason for continuing with such a pregnancy was religious celebration of suffering.
Fortunately the blogger either saw the error of his ways or realised the futility of his quest because the blog in question soon disappeared. I was reminded of it again last night, however, when I stumbled upon www.pray4trig.com, an online campaign to mark Trig Palin’s next birthday (April 18, 2010), with a Worldwide Day of Prayer in response to what the organiser’s see as Trig being the victim of constant media abuse.
Unfortunately, rather than praying that people will accept Trig and other children like him for who they are, the organisers have decided to “join in asking God to make Trig whole.” Yes, that’s right, because they are fed up with Trig being derided because he is different they have decided to arrange a Worldwide Day of Prayer to change him.
Personally I find this just as offensive as the perspective that children with Down’s syndrome shouldn’t be born in the first place. Indeed the underlying suggestion of intolerance is confirmed by the response to parents of children with Down’s syndrome who have pointed out that perhaps it might be an idea to consult the Palin family as to whether they would actually like their son to be fundamentally altered (this is of course assuming that you believe such a thing is possible, and I’m just not going to go into that given my declaration of WelcometoIllinois as a religion free zone).
One commenter described that suggestion as “the most sickening commentary from a human being that I’ve ever seen” which is quite amusing in its exaggeration to be fair. The same person accused me of wanting “to keep his disabled child as a pet, instead of praying he will grow up to become a grownup human being with hopes and dreams beyond not soiling his diaper” in response to my suggestion that people should accept those with disability for who they are.
What stands out to me in reading the blog and the comments is that although the aims and beliefs of “End Down Syndrome” and Pray4Trig are completely different, the underlying prejudice – that people with disabilities are unable to contribute meaningfully to society – is the same.
Pray4Trig does inadvertently raise an interesting question about people with Down’s syndrome however – whether curing them of Down’s syndrome would fundamentally change who they are. Indeed End Down Syndrome asked this very question – albeit related to gene therapy rather than prayer.
My response then was that while I was in favour of using drugs to improve life for people with Down’s syndrome, gene therapy feels like quite a different proposition as it raises questions about fundamentally changing the personality of the recipient.
As our son G has got older I have come to accept that Down’s syndrome is a fundamental part of who he is. It does not define him, but it is a part of what defines him. This is hard to express from a philosophical perspective, but from a scientific one there is the fact that the cell division which caused the extra chromosome occurred in the creation of an egg cell or sperm cell which was produced before G was even conceived – in fact if it was an egg cell the extra chromosome that would cause G’s Down’s syndrome existed since my wife was a fetus, which is mind-boggling.
As I have done before, I return to an article by the journalist Simon Barnes in The Times:
“If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?”
I have great confidence that G, will grow up to become a valued member of society and that he will always strive to do his best and to make the most of his potential. I have confidence in that, because that is the way he will be raised, just like his brother, and just as I would raise any another child. And he will also be raised to love people and accept people for who they are – not who they might be. It’s a shame not every one is raised that way.
P.S. Thanks to OZ Squad for bringing the website to my attention. It’s a new resource attempting to challenge content offensive to people with Down syndrome, and is off to a good start.