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.
Not only is she coming along to StepUp! to do the 3km walk in Carlton….she is going to walk there….from her house….in Macedon….60kms away.
She rang me to tell me about her plan and my first thought was…are you serious? You’re not an athlete!
And then I caught my breath….this is the whole point. Setting out to achieve something that people expect you to be incapable of is the journey facing a lot of people with Down Syndrome every day in today’s society.
How quickly do people presume that someone with Down syndrome will not be able to do things?
How fast do we jump to the conclusion that its all too hard to give people the help and encouragement they need to make their way?
How much do we bemoan the extra money or effort to provide the same opportunities as people without a disability?
60kms is not Mt Everest but it will be a challenge for Sammy. She doesn’t do any regular full-on exercise, she has work commitments, two young children to raise and a house to look after. In order to achieve this goal, she will need help.
She will need people to look after the kids while she trains, maybe someone to do the washing or the cooking occasionally.
She will need people to train with and support her.
She will need people who have done it before giving her advice and information.
She will need people telling her that she can do it and to keep going when she thinks it is all too hard.
So why do it in the first place?
Because it will be worth it.
Because the walk will be beautiful…
There will be mountains to climb and obstacles to overcome but she will get a view of the path that not everybody takes to time to see.
She will learn about herself, what she is capable of and what is important.
She will get fit and healthy and learn a new way of interacting with the environment around her.
Her view of the road from her feet will be different than from behind the wheel of her car. It will be a lot slower that’s for sure but there will be more to see and appreciate on the way.
She will be able to tell others about what she felt and saw and open eyes to a new perspective.
So what will happen if she doesn’t make it? Who cares. We are asking people to donate towards her first step…not her last one. The idea being that when we have the help, support and information we need to take the first step on what might be a difficult road, we have already finished the hard part. The point is not guaranteeing she will achieve the goal in order to justify the support in the first place…it is about providing the opportunity for her to give it a go…a red hot go…a realistic, achievable and worthwhile go. Which is all people with Down syndrome need to push aside more of the unnecessary barriers society puts in front of them.
We ask that you raise your expectations about whether Sammy can do it and at the same time, think about how your current expectations towards people with Down syndrome could be raised as well. All the money raised goes to Down Syndrome Victoria to ensure their important work can continue into the future.
To encourage Sammy to get waddling to StepUp! click here to donate or better still, join our team, Wade’s Waddlers and walk with us on October 12 in Carlton to meet our big beautiful family.