Disability can sometimes be a tough topic to talk about. It’s especially hard when people without a disability struggle to fully grasp what’s it’s like to live with one.
But when it comes time for talking, many of us with a disability shoot ourselves in the prosthetic foot, by strictly defining the kinds of conversations we can have. Occasionally this happens through lists of what people can’t or shouldn’t say to us, rather than what they can or should.
They pop up often enough: “10 things not to say to someone with a disability”, or “10 things you shouldn’t say to someone in a wheelchair”. They include things like castigating strangers for offering their help, or for asking about a person’s disability.
At best, these lists represent the personal views of their authors, which is fine. Too often though, they suggest they’re universal disabled truths. At worst, turning a conversation about disability into a list of “don’ts” tells people that it’s best to avoid engaging about issues of disability at all, for fear of offending someone.
The assumption pervading the lists is that if people simply follow them, we’ll all have better conversations about disability. But if you start a new job and each morning for the first three days the guy sitting next to you says “here’s a list of things not to say to me”, on day four you’re not likely to have the most meaningful conversation ever. Chances are you just won’t bother talking to him at all.
Truth is, those kinds of lists don’t foster better conversations about disability, they foster fewer. In the race to be righteous, they jettison what’s right. I’m tempted to say we should start by ditching lists altogether. But people love lists. So here’s mine: five things you can say to someone with a disability:
1: “Hello, hi, g’day, how are you?”
Hello and its equivalents are perfectly reasonable ways to begin a conversation. Try them out on a person with a disability sometime. We won’t bite. Don’t say all four at once, though. That’s just weird.
2: “Can you tell me about your circumstances/disability?”
As long as you accept “no” or silence as a reasonable response, it should be okay to ask. It’s entirely up to the person with a disability to decide if they’d like to engage on the issue or not. People with a disability are well-tuned to spot what might be a genuine but clumsily worded question, as opposed to something that’s meant to be insulting. But let’s stop assuming people are going to somehow get a good sense of the issues we face if we don’t communicate them.
3: “Would you like a hand with that?”
Wouldn’t the world be a better place if we all gave each other a bit more of a hand – disabled or not – every now and then? I don’t mind if you ask.
4: “I think you’re very inspiring”
This is a tough one, and is the subject of plenty of well-founded criticism. It can suggest a misunderstanding of disability and the impact it has on us.
People with a disability don’t feel inspirational just because we’re getting on with our lives. It’s not our job to make you feel a warm glow for telling us so. But we all need as much inspiration in our lives as we can get – and inspiration is a very personal thing. How and where an individual experiences it, is up to them.
If you’re going to say this to someone with a disability, though, make us earn it. Do it after you have an understanding of the issues we face; after you’ve had a meaningful conversation with us.
5: “Tell me about yourself”
This is about getting to know someone as a person and letting them choose the parts of their lives that define them. People with a disability are writers, painters, runners, parents, accountants, introverts. Some of us have no legs or can’t see or can’t hear. All of those things get poured into the great big blenders of our lives.
Exactly what flavour of person we are at the end of it all is best discovered by long, funny and honest conversations – over coffee, wine, hot chocolate or mineral water. Whatever beverage you choose, start by talking.
If we want to bash through barriers confronting people with a disability, we need the community to have a better understanding of us. This probably means some uncomfortable conversations – for others and for us. Focusing on what people shouldn’t say isn’t the way to build good relationships. If we can face living our lives in these bodies, we can face some difficult exchanges along the way.
This article originally appeared in The Guardian
Address to the University of Queensland graduating class – December 12, 2013
Chancellor, Acting Vice-Chancellor, members of Senate, members of staff, distinguished guests, graduates of 2013, parents, ladies and gentlemen.
I have a question: why are you here?
If I were to ask every single graduate why you are here tonight, I’d receive a range of responses.
You’d tell me you’re here because you wanted to celebrate, to commemorate or maybe just draw a line under a few very important years of your life. You’d tell me you are here because you were graduating and, like turning 18, getting a drivers licence or taking your first overseas trip, it’s an event worthy of some note.
You might say you’re here because you wanted to join with that bunch of strangers you met during first semester first year who ended up becoming your friends. Or perhaps you’re here because you studied hard, slaving away over textbooks and dreading group assignments, and that you earned the right.
Or maybe you’d simply tell me you arrived here tonight because you caught the number 66 bus from town.
They seem like different answers. Varied. But they are not.
Click on the title to read the whole speech.
Have a very Merry (and Ugly) Christmas
If you’re reading Ugly for your book club, drop me a line via email. I’d love to chat via Skype or FaceTime or maybe even visit if you’re in Brisbane (I can be tempted with Tim Tams and a nice cup of tea, or maybe a beer on a hot day). I’m really happy to chat about my life and writing the book. And I’d love to hear your stories too.
If you’d like to hear a bit more about what I’ve got to say about being ugly and having a disability, check out some of the interviews I’ve done recently.
Talking with almost-Wynnum-locals Moyd and Loretta on 4BC: here.
Chatting with the wonderful Warren Boland on 612ABC: here.
A fun interview with Natasha Mitchell from ABC Radio National Life Matters: here
Helen Chryssides at the Good Weekend magazine wrote a lovely piece with me and Vince: here
Josh Alston at the Wynnum Herald brought out the proud local in me: here.
If you’re in Brisbane, there are a few days left to check out Spare Parts. The exhibition, presented by Priscilla Sutton and the Brisbane Powerhouse, aims “to not only recycle pre-loved arms and legs into new and exciting artworks but also to create an open and positive conversation, celebrating prosthetics and how much can be achieved by using them.”
Check it out.
This is one of the photos appearing in my memoir, Ugly. It was taken for a feature in The Australian when I was in grade one. I normally wasn’t allowed to sit on the fence – my mum was worried I’d fall backwards and bang my head – but I think the photographer convinced her it would be okay. (photo courtesy Newspix)
If you feel so inclined, please drop by my Facebook author page and say hi. From time-to-time you’ll see some extra content and discussions pop up there that won’t be posted here.