I’m a bit of a stick in the mud when it comes to awareness campaigns. There’s no denying the effectiveness of some of them for raising cold hard cash..ice-bucket challenges, no make-up selfies and odd socks campaigns spring to mind…but while the share-ability of them is useful, I am always wondering how much pouring a bucket of ice on your head translates into a real and effective understanding of the condition it is connected to.
In the Down syndrome community in Australia and in other parts of the world, one of the biggest events for raising funds and awareness is the annual StepUp! walk. Previously known in Australia as the Buddy Walk (as it is known overseas) this event is one that that we have really embraced in our family. I like it because it actually gives people an opportunity to understand the positivity and connectedness of our community. This year will be our third walk and I am really looking forward to it. The money raised from these events help to fund the local Down syndrome organisations. In our case it is Down Syndrome Victoria who were instrumental for me when I was pregnant with Wade and told he would almost certainly have Down syndrome. The services they provide to new parents in the early days right through to schooling, entering the workforce, living independently and ageing is fundamental to health, wellbeing and resilience of people with Down syndrome and their families.
In the time since Wade was born I have stayed involved with DSV helping to support new families, co-presenting workshops and I am on the editorial committee for Voice, the national journal of Down Syndrome Australia, too. I know how hard it is to provide the kind of support needed to families with little to no ongoing funding!
The reason I like StepUp! over other awareness campaigns is it shows our community doing things that large parts of society still believes is impossible or unlikely for people with Down syndrome…living happy, valuable, productive lives surrounded by people who love and support them. 50 years ago parents who gave birth to a child with Down syndrome were routinely advised to abandon their children to an institution and ‘get on with their lives’. Parents were told that their babies would amount to nothing, be unlikely to live very long, live a life of suffering and health problems. They were told they would never learn to walk or talk. In the 1980s the life expectancy for people with down syndrome was 25. Today it is over 60 and rising. People with Down syndrome are not only living longer lives, they are living better lives too. Advancements in health, therapies and education have removed a lot of unnecessary barriers for people with Down syndrome but there is still a huge one in the way…..the curse of low expectations from the people around them.
My family has always been an enormous support for us. From the time we were given the first indication that our baby would have Down syndrome right up until today, I have known that they are 100% behind us. Every year for StepUp! my sister Sammy, has found some incredible way to get people behind this wonderful event. The first year, we engaged in a little round of sibling rivalry…..who could raise the most money for our team Wade’s Waddlers. It got intense with one of us edging ahead of the other then falling behind at different times. In the end sanity prevailed and I raised the most money!! I think we raised about $200 all up and we were pretty chuffed.
The next year, she wrote personal limericks to everyone who donated as a bit of a laugh. A bit of a Laugh??? she single handedly raised over $2,000 in three days and wrote over a hundred poems and posted them on Facebook as people donated to the team. It was mind-blowing.
This year though she is doing something wonderful and I couldn’t be prouder. Continue reading