Tuesday, July 24, 2007

Please sign this petition for a Canadian Bill

It seems very clear to me that there is an enormous difference between the image of Down syndrome that I see in the media and wider world, and my personal experience. I mean ENORMOUS! I'm sure I'm not alone, and it's not just parents looking on the bright side, or seeing no wrong in their beloved children. I really believe that there is so much ignorance about Down syndrome, and we, as parents, experience it all the time. And before we had our children we were probably the same - I couldn't imagine a baby with Down syndrome, just a man in his twenties with bad brown trousers on.

People are often surprised and shocked by Alfie - he's so sparky, responsive and engaged - and I'm sure it's because we are led to expect so little from people who have Ds. Alfie is by no means extraordinary - I think he's developing pretty typically for someone who has Ds and no major physical problems (apart from constant illnesses!), but nowadays we think of Down syndrome as such a terrible thing - the demon of pregnancies; the curse of the older woman - that it is surprising to us when it just isn't all that bad. We now understand so much more about how people with Down syndrome learn, how health and learning can be improved, and how an independent life can be achieved. Isn't it a paradox that at the same time fewer and fewer are given the chance? - due in large part to prejudice.

My theory is that the way that pre-natal testing is carried out is partly to blame. I was reading a newspaper article last week which included an interview with a woman who had chosen to terminate her pregancy because the baby had Down syndrome. She had just two days to make her decision and only had the input of medical doctors to guide her. The reason she gave was that having a child with Down syndrome would have put her and her family under "severe hardship". Severe hardship?? Some hardship I would say. I've got to know much more about hospitals than I would like, and we are poorer financially than we might otherwise be - but severe? That just isn't my experience.

What if the same woman had been given information from parents who had actually brought up children with Ds? What if she'd been given information from the Down syndrome society and been offered a realistic picture of how life can be with all the lows, and the highs? I wonder if she would have made the same decision?

As more and more people are told that - horror of horrors - they might have the chance of having a baby with Ds - and, however subtly, advised that the only fair thing to do for their families and unborn child, is to terminate, it could equate that more and more people will live with the belief that Ds is a very, very, terrible thing - that people with Ds must be horribly and severely disabled and not really deserving of a life.

I believe that this new bill that is being reintroduced in the States might be the key. If we introduced it in Canada, alongside the wider introduction of pre-natal testing, it would ensure that doctors had to provide more balanced information - by law! This would be a start. This wouldn't take away people's choices, but it could give them a real and informed choice.

The NSDSS has set up a petition to get this fantastic bill introduced in Canada. Please can you sign it and pass this address on to everyone you know - and pass it on to any Canadian bloggers too! Thank you so, so much.

Noelle's blog has lots more information about the bill, as she was responsible for getting it resurrected in the US.


Anonymous said...

Well put Alice! I've sent this petition to everyone I know online. I'll tell you someday about my experience of finding out that Eric had DS - was not nice at all! I only wish they would of given us some hope. Eric is the greatest joy!

Felecia :)

jennifergg said...

I think you're right. And I think it's a sad state of affairs when tolerance, and curiosity about differences, needs to be managed by law, but so be it. It's a start.

girlfriday said...

Good for you. I agree, positive info to parents will make a difference. I also agree that more people need to stop and realize that children with special needs are people,not burdens. Taking care of family, not a burden either. Ann