Disability

The snakes and ladders of our lives

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.

A quick Ugly media wrap

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.

There’s also a review of Ugly in The Australian here and in the Sydney Morning Herald and The Age here.

Because what else are you going to do with an old prosthetic?

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.

On the fence with a peg-leg

 

Grade one pic of me sitting on the fence.

 

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)

 

Making fun of disability for fame and profit

It’s a wonderful world where overpaid, over-exposed radio personalities can ridicule a disabled baby for fun, fame and profit.

That’s what a number of radio personalities did recently when commenting on a baby born in Pakistan with six legs. On this occassion the almost-always-vile Kyle Sandilands was actually outshone in his awfulness by his Sydney colleagues Ryan Fitzgerald and Michael Wipfli. You can read about the investigation – into Sandilands at least – and hear the comments (I’m not going to repeat them but trust me when I say they were awful) here.

I can’t boycott the Sydney stations but I can boycott their sister stations in Brisbane – Nova, B105 and Triple M.

Significantly, I doubt if either station would have gotten away with the comments – and probably not even attempted them – if the baby was from Australia (or probably any other western country for that matter). So as well as ill-considered comments about disability I think there’s a healthy dose of racism in there too.

It’s time to start switiching these idiots off. 

An open letter to the Australian SF community

On Sunday night the Australian National Science Fiction convention held the annual Ditmar Award ceremony. In almost every way, the committee put on a fine awards ceremony during a really good convention.

However, the venue staging was awful, in terms of its accessibility. High, and only accessible by temporary stairs, the stage was off-limits to anyone in a wheelchair, anyone in an electric scooter and anyone with a significant mobility impairment. This included one recipient in a mobility scooter who – ironically – won an award celebrating how much she’d given to the local community through her participation over decades.

This should not be acceptable to us as a community in the twenty-first century.

People with a disability should have the same opportunities to participate on-stage as everyone else. I’ve seen it several times in the last few years, so it’s not a problem confined to Western Australia. Far from it. These sort of things are primarily controlled by the venue, not the convention committee, and can’t be fixed unless addressed a long way out. That’s why we need to talk about it as a community now.

We wouldn’t for a second tolerate a sign saying: “No red-heads or women allowed on stage” and we shouldn’t tolerate staging that says exactly same thing to people with a disability.

Ultimately, it’s sensible on many levels. Proper access for people with a disability is also better access for older members of our community who also face mobility challenges too.

I raised the issue with Damien Warman and Dave Cake after the ceremony, both of whom are on a sub-committee that helps run the awards process. They understood my concerns and gave a commitment to undertake steps to help address the issue. But ultimately they can’t fix it. They can’t force a convention committee to do it, and they shouldn’t have to. We should insist upon it as a community.

If it means staging the awards differently – we should do that.

If it means committees asking someone with a disability to walk the space with them before setup – we should do that.

If it means tougher negotiations with hotels – we should do that.

If it means everyone pays $5 extra on their membership to allow for improved staging – we should do that.

These things are important to us as a community, and we should fix them.

Dear Jeremy Irons, if you chop off one leg I’ll meet you half way.

I’m trying to work out whether I can precisely balance the ann oyance and bemusement I’m feeling for comments from actor Jeremy Irons that smokers should be afforded the same rights as “handicapped people and children.”

Disability Bitch has done a nice piece on it from the British perspective. It’s worth a read, especially given what’s going on in the UK at the moment. And lots of others have run through things like his choice of language and some of the logical fallacies inherent in his argument.

I can’t work up too much vitriol about it because mostly it just strengthens my belief that actors who play intelligent and cultured characters should not walk out their door without a script in their hand. I do however suspect Mr Irons may rethink his comments if he was confronted by a few angry people waving a saw, a few bottles of vodka and a pack of cigarettes in front of him while looking longingly at his left leg.

Got a chronic illness? Get online

Interesting new study from the Pew Research Center. It confirms that while people (in the US) with a chronic health condition are less likely to get online than people not suffering a chronic illness, once online they become a mighty social networking force.

And yet, those who are online have a trump card. They have each other. This survey finds that having a chronic disease increases the probability that an internet user will share what they know and learn from their peers. They unearth nuggets of information. They blog. They participate in online discussions.

I suspect it’s similar for people with a disability.

Indeed I’d be keen to see a survey similatr in size to this one that went further and looked at whether people with a disability or a major chronic illness not only used social media to engage more about their affliction but about anything. The internet lowers the barrier for disabled people to find their tribe (whether it’s an online writing group, manga chat room or a MUD) as well as making it easier to find information about their health. It certainly has for me.

Research grant anyone?