By Robert Hoge
Starting is the important thing
Here’s the thing: I don’t know much about Down syndrome.
I know how the condition occurs but not why. I know that people with Down syndrome share some characteristic physical traits and experience different levels of impact on their intellectual development. If you pressed me, I could probably list a handful of other things too. As well, I don’t really have a particularly deep knowledge about deafness, about blindness, about cerebral palsy, about a whole range of disability. I do know a fair bit about the life of an amputee but that’s really just the luck of the draw thanks to me being one.
This worries me sometimes. I wonder whether, as someone with disability, it’s my responsibility to know a lot more about all disability. If I’m not going to do that, who is?
Then I think about the mums and dads of kids with Down syndrome who have scoured every piece of information they can find. I think about brothers and sisters of people with some form of hearing impairment and have learnt a whole new language to communicate with a sibling. I think about girlfriends of people with cerebral palsy researching effective therapies.
All of that is worthy and valuable and beautiful.
But what if all of us – the mums and dads, the brothers and sisters, the partners, the people with disability themselves – could trade even one-tenth of a per cent of our collective knowledge for a broader understanding of difference and disability across the whole community?
For me, that’s a smart trade-off. Increasing the awareness and understanding of disability and difference in everyone everywhere would be worth it. The problem with all these kinds of ideas, of course, is knowing where to start. Luckily that’s already been answered for you. Start here.
Start by looking for difference, and when you find it, celebrate it. When it’s missing, start demanding it.
Start by understanding a few things. Disability is never the only thing that defines a person’s life, and it’s seldom even the main thing. Start by looking for difference, and when you find it, celebrate it. When it’s missing, start demanding it. Share stories. Be curious. Ask questions. Don’t worry about not knowing the answers before you ask. Increasing your knowledge and understanding by just a little bit can have an exponential benefit in the community.
* Robert Hoge has worked as a journalist, a speechwriter, a science communicator for the CSIRO and a political advisor to the former Queensland Premier and Deputy Premier. He has had numerous short stories, articles, interviews and other works published in Australia and overseas. He also enjoys photography, and is interested in disability advocacy and social engagement. While he never went far with his professional lawn bowls career, Robert did carry the Olympic torch in 2000.
His memoir, Ugly, is about growing up ugly and disabled. It’s also about bad haircuts and reading and awful teen love poems and underarm bowling as a metaphor for… well, you’ll just have to read the book.
He lives in Brisbane and has an amazing wife and two wonderful daughters.
[Cover photo © Charlie Anderson]