This seems to come around so quickly and I worry I’ve got nothing new to say. Or that I’ve said it all throughout the year in my general posts.
Just know that we (the DS community) raise awareness because we care. We care about the people in our lives with Down’s Syndrome and we fight for them. We fight for others to become “aware” – to try and make them understand that DS isn’t necessarily what you think it is. We look for balance – for dark and light, Down’s Syndrome isn’t a depressing life sentence, but it’s not unicorns and rainbows either. That’s just life full stop.
I sat and thought about what I wanted to say this year and realised I want to talk about whether we can ever really get someone outside the circle to fully understand. Can we ever really make Down’s Syndrome appealing? Can we ever make it ok and not negative?
Close friends of ours got pregnant. They had the screening for Down’s Syndrome. Mum-to-be says to me “So we had the test and I told the lady that we weren’t really that bothered about the result because of what happened to you..” – at this point I start to feel all warm and fuzzy inside; that they would feel ok with a high chance of DS because they know and love Audrey. Ahhhh. But then she continued; “Because, well, you got ‘low risk’ and it didn’t mean anything – Audrey had Down’s Syndrome”. Oh. She was making a point about the test not being worth doing because it’s not accurate, not that it’s not worth doing because they’d be ok with a child with Down’s Syndrome. Of course this was an opportunity for me to push back and question her, but I didn’t. I just smiled and nodded like a fool. I don’t really like confrontation, but I suspect she would have backtracked and it would have been awkward.
My point is, even people close to us (on the edge of the circle), don’t necessarily feel ok about Down’s Syndrome, so how on earth can we spread a balanced message of hope and positivity to pregnant women who have no connection to DS?
Well, maybe we can’t… But maybe we can, so we’ll keep trying.
We can fight for better language (a baby with Down’s Syndrome, not a Down’s baby. Low or high “chance” not “risk” of Down’s Syndrome), we can fight for better knowledge (facts about people with DS attending mainstream schools, leading independent lives) and share our positive stories to outweigh the dated negative ones.
And so I’m going to point you in the direction of this (highly anticipated in our community), documentary;
And this great article;
And I’m going to continue writing my blog and sharing our lives in the hope we reach the right audience. It certainly can’t do any harm to keep on keeping on… We live in a rich and varied world. Life would be so boring if everyone was “perfect” and “normal”.
I can only present life as we know it and our experiences, but I know someone who had an adult son with Down’s Syndrome that was in nappies and only had a few words – the kind of “worst case scenario” if you will. But they loved that son/brother/grandchild and never regretted having him. They would have had every right to be bitter and angry about the life he had/they had, but they weren’t. Love doesn’t necessarily conquer all, but it has a bloody good go at doing so.
One thing I’m 100% sure about is; my world is better for having Audrey in it.