Wednesday, October 13, 2010
October is Down Syndrome Awareness month
DS has been on my mind a lot this month. We have our buddy walk coming up in 2 weeks which I am really looking forward to. Our first one was in 2007 and we had a ball. I hope this year's is a cracker as well. I have spoken to a couple of journalists this year in relation to DS. Neither knew very much about it. They both asked the standard questions. I need a more pat answer to "So do you think enough is being done to support people with DS'. You see - for us at the moment - things are going swimmingly. Sure some things could be improved - but that is the case I am sure if you asked any parent of any child - there are things we wish we could do better, or ways we'd like to support our kids more effectively etc.
If my response to how Hannah is going is full of positive things - like she loves school, has lots of friends and a couple of really good friendships developing, that her teachers are brilliant in their approach and acceptance of her 'differences', that she adds to our family just as Kit does, in her own way... then I can almost hear the guy switch off - as if he is thinking - so why all the fuss?
Well this post is me trying to work on my response - to make it clearer why it is precisely because things are going well that it is so important to rally the troops, to raise awareness and lobby for better supports. See what can be achieved? Well imagine if... and not only that but this isn't a quick fix - the issues will no doubt continue and some will change as Hannah gets older. The gap between ability and disability may widen - but I can't see evidence that support increases incrementally at all. I can see the level of support we get by on at school being stretched a bit further each year - and if resources aren't improved then Hannah may have no choice but to leave the school where she has had such a positive start. She may have to leave a place where she is known and accepted and wanted. If a minimal level of resources aren't available to facilitate her place there - then where do we go? With support she should be able to finish her primary years there. Yet that's just the start of her schooling - HS is way too far ahead, then employment, activities and hobbies, independent living - these crucial issues - I must wait and see about - but I won't be caught out - there are HUGE shortfalls between what is required and what is available. Others in front of me report back amongst the 'special needs' community/networks. And so every chance we get - we lobby, we raise awareness, we rally the troops.
We have to. We can't just sit and hope or struggle on alone. The issue is far too important to leave to chance, basic human rights are at risk. It is essential not only for our families but for our society. When I ask my students what is the most common ground of discrimination complaints in NSW - they generally say race, then women, then... a whole heap of others. They are always surprised when we look up the annual report and see women, then disability as the most common grounds for complaint of discrimination. Sigh. It's a task that would seem overwhelming except for all the fair minded citizens who listen, learn, care, and act. Who tell their stories over and over until they feel like a broken record, who open their minds and ask questions, who take the opportunity to learn about life in another persons shoes. Who get on with living the best way they can, who share the richness of their experiences with the rest of the world. Who celebrate the many things we have while at the same time trying to redress all the things we still desperately need. Yes Happy Buddy Walk - I love our slogan - 'Celebrating 30 years. We've come a long way baby' - indeed we have - and still we march onwards, lobbying, raising awareness and rallying the troops.
But it's not a sound byte is it? I'll have to think on it a bit more....