On Exhaustion

People never ask me what it's like to be deaf, or what I find hard about it. As I lost most of my hearing when I was four and had some speech therapy, my speech is fine, and people don't realise I have a disability until I tell them. Even then, they don't realise how bad it is, because I seem to listen so well. And because I am polite, and hate people making a fuss, I rarely remind them to speak clearly.

It's not the isolation that's difficult – I’ve found ways around that through writing, reading and a small circle of close friends, though it took me a good twenty years to learn the social skills I needed to make friends, and those twenty years were excruciating. Nor is it the inconsideration of people who assume that you’re rude or simple because you haven’t heard them; I accept that I don’t have a visible disability and that, for the most part, people aren’t deliberately unkind. Nor is it the cultural apartheid of cinemas and performance venues that don’t care enough about their deaf patrons to ensure working loop systems, or even to install such systems at all, such as the Cineplex cinemas in Brisbane. On asking the manager at Hawthorne why they didn’t have a hearing system, I was told that the movies they showed were blockbusters, which were so loud that deaf people can hear them. I would have laughed if I wasn’t so angry; it’s quality of sound, not loudness, that makes the difference. Meanwhile, the headphones at Palace Centro are patched up with duct tape, and those at Palace Barracks were broken for months. When I complained about the latter and pointed out that it was discriminatory, I was told that I was being ridiculous. I never went back. I have taken my money elsewhere and I watch films at home, or only go to screenings with subtitles, or watch dance performances that don’t require listening to words.

These are irritations and, like cuts and scratches, they always heal and fade. But the one thing I can never get over is the perpetual exhaustion. I have 25% of an average person’s hearing, and I rely on this bit of hearing and lipreading to get by. I can’t hear with loud background noise, nor in a group larger than three, and even then that’s hard. And as I’ve lost one sense, I’m constantly alert to compensate for it – to check someone’s face in case they’re speaking to me, to strain to hear the words in a sentence and match them with body language, to read lips and put the words into context, to work out how to get some information at a train or bus station when I can’t hear the overhead speakers. The energy necessary to maintain this level of vigilance is enormous.

These past few months I’ve been teaching creative writing one day a week at the University of Queensland. The classes were small enough for me to hear without passing round the transmitter of my FM system (which is like a small walkie talkie for deaf people), though I asked students to use it when they were reading because their heads dipped down to their papers and I couldn’t read their lips. I had to be completely alert so that I could hear their contributions and respond to them. It made the discussions a bit stilted as I could only hear one person talking at a time, but I figured they were adult enough to deal with that.

I loved my students. They tried hard, they listened to the lectures and my tutorials, and they improved in a very short time. Teaching creative writing also helped me to remember my own knowledge about writing, and to refocus on the nuts and bolts of my craft. However, I was so tired by the semester’s end, and so frustrated that I hadn’t had any energy to write, that I resolved to stick to my other, two-days-a-week admin job and write, even if that meant living on baked beans for six months.

Then I was insanely lucky enough to get funding from the Australia Council to work on my young adult novel, When the World Shivered, and the future isn’t looking quite so grim - a huge and unutterable relief. I've only had a handful of days off since February, and this means that I can have evenings and weekends off.

This novel will be based on my short story of the same name, which was published in the Review of Australian Fiction. The novel about the relationships between children with disabilities and their animals. I started thinking about it when I went to the Artists with Disabilities conference in Sydney last year, and watched people with their carers. The carers were people who wanted to be there and who were paid for it, but what would happen, I wondered, if a person with a disability was matched with someone who wasn’t temperamentally suited to caring? I was lucky as I grew up because my brother has a generous disposition and likes an audience, so he was happy to relay information to me that I missed (albeit often elaborated upon; the Whites are nothing if not performers). But what if I hadn’t had that kind of sibling, if my sibling was someone who just wanted to be left alone and not have to look after someone else?

I started thinking about companion animals, and dogs, and how we have domesticated them, which can also be seen as a way of keeping them close to us without their will. Do dogs really want to be dependent on us? Do horses want to carry people around? These are the kinds of ideas I’ll be exploring in the novel. I’ll also be reading books about animals and humans (if you have any recommendations, leave them in the box below!), and I’m about to write a post on Helen McDonald’s H is for Hawk. With luck, given my tortured schedule, I should have it up later this week.

I’ve also finally got back on the bandwagon with my author newsletters. If you’d like to be on the mailing list for these, you can sign up here.