Don’t Dream it’s Over

A while back a speculative fiction writer friend, in a conversation about apocalypses, told me that one of her worst fears was that a solar flare would ruin the internet and that society would have a meltdown (I went home and made a backup of my writing). She mentioned another writer friend who was deeply unsettled whenever her children weren’t on the same continent, in case Armageddon came and she was separated from them. I thought about this in passing as I prepared to go overseas, though not in any serious way. Perhaps it was just a thought, or perhaps it was prescience.

In mid-March, as the pandemic gathered speed in Germany, the Carson Center said that we could go home to our countries if we wanted to. I spent days mulling over what to do and Skyping with family to work it out. I initially decided to stay, as I had a good place to live and a safe routine (home-work-shops-English Garden), and Germany has a good healthcare system. So on Tuesday I went for the seventh time to the KVR, Munich’s administration centre, to see if my visa was ready. Approximately 20 people were on the whole train & I wore my red gloves so I didn’t pick up any bugs. Outside the KVR was a cluster of people, chains across the entrance, and security guards standing behind them. ‘Corona,’ I heard one of the guards say. That was the end of my visa, I figured. Luckily, after standing in a queue for 3 hours two weeks before, I had been able to get an interim visa.

As I had heard the shops were closing and as my main mechanism for dealing with stress and anxiety is buying nice things that make me feel better, I walked to a boutique named ‘Milk’ which a friend told me about. The lady who owned the shop said it was her last day of trading and she didn’t know if she was going to survive. I asked if the government was helping and she said she hadn’t been given any information at all. She didn’t like the heavy, top-down approach. ‘That is okay in China,’ she said, ‘but Europe, it’s a democracy!’ I too was worried about this, and wonder if the authoritarian measures will stay in place once the virus clears up. I bought two frocks and a pair of shoes, using funds I had set aside for a trip to Italy.

It was eerie in the city. The square at Marianplatz, which had been crowded at Christmas, was emptying of people, and though a handful were sitting outside drinking coffee, the air was tense. At Odeonsplatz, where I had bought Christmas greenery a few months before, a man sat on a stool playing a clarinet. The sound was mournful, the sound of things ending.

Odeonsplatz, usually crammed with people, was nearly empty.

I walked home. When I got back I found that the Australian government had advised all Australians to return home as soon as possible. I chatted with friends in Australia about the announcement. I had thought it applied to backpackers rather than people with more stable setups, but a friend told me the word was that the airlines were going to go bust, so I had to get out.

I slept on it, then on Wednesday morning I booked a ticket for 31st March. I was exhausted from anxiety. I went into work and watered the plants, but my brain wasn’t functioning. I ran into a colleague from Singapore who was packing up his office. ‘I thought you were going on April Fool’s Day?’ I said. He told me that he’d been advised to bring it forward as there might not be any flights left. I wondered aloud if I should bring mine forward. I went into the boardroom for a Zoom workshop.

I was still thinking about this during the meeting and it was hard to concentrate. When the meeting ended I changed my flight home to Monday 23rd March. I then found out that Qantas was cancelling all international flights from late March until at least May, so I was really glad I changed the flight.

I packed up my desk, gave my Madonna lily to my friend, looked at the budding tree outside my window for the last time (I was waiting to see what sort of leaves it would have) & rejoined my two colleagues in the conference room, where we drank some wine unearthed from the fridge. We took the bottles with us to the English Garden, picking up Vietnamese on the way, and sat on two park benches a metre apart while the light dimmed around us.

I checked my Qantas/Emirates flights all week to see if they were confirmed, which they were, but I was paralysed with anxiety and wouldn’t leave my apartment in case I became ill and couldn’t get home. On the morning of the 23rd I heard that Dubai was closing its airport from Wednesday 25th, but my flight left Dubai at 10.30am on the 24th. I tried to phone Qantas but figured it was a lost cause (my brother, in trying to get back from Australia to the US a few weeks before, was waiting on the phone to them for 4.5 hours), so I sent them a message on Twitter to check that all was ok, but they didn’t respond. I finished packing and cleaning my apartment, and caught a cab to the airport.

When I got there, the place was virtually empty. I found the Emirates desks. They were closed and my flight on the overhead boards read ‘Cancelled.’ My heart sank.

I found a young airport worker nearby who spoke English and he said that Emirates was closed. ‘I can’t get home,’ I told him, more to speak my distress aloud than anything else. I realised I had to sit down and work out what to do.

I contacted Qantas via Twitter again and asked them to contact me asap. A response came a few seconds later, and Chloe the sales assistant said that the cancellations were at Emirates' end & I would get a refund or voucher. I don’t see why they couldn’t have replied to my earlier tweet, instead of me having to find out at the airport.

I started heading back to my spotless apartment, for which I still had a spare key, until a friend suggested that I get a hotel. I got off the train, went back to the airport and waited for the bus and went to the hotel. Because my brain wasn’t working from stress, I missed my stop and had to stay on the bus until it circled around again.

At the hotel desk, I explained that my flight had been cancelled and that I needed a room to work out what to do. ‘Qantas aren’t being very helpful,’ I added. The man was kind and suggested I call the consulate. I think he felt sorry for me, because he gave me a room that, in ordinary circumstances, I would have loved (it had pink shag pile carpets and pink plastic flowers).

I set up Bluetooth on my phone and hearing aid so I could hear, and contacted the consulate in Berlin. The call was transferred to Canberra. The woman spoke very fast; I had to explain that I was deaf and ask her to speak more clearly. She said I needed to go back to the airline, regardless of how long it took, and get them to sort it out. I sent a series of increasingly desperate messages to Chloe, but she only replied tersely that the borders were closing everywhere and flights were being cancelled.

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With some trepidation, because I knew it would spin them out, I updated my family, then got on the internet and started looking at flights. After a few hours my brother in San Francisco finished his work and helped me as well. We were able to get a flight with Thai airways, but I realised that I needed a negative Covid-19 test to transit at the airport. I looked up English-speaking doctors and made an appointment online, but explained to my brother that it would take 4-5 days to sort out, & the Thai borders might close in that time. He looked into Canadian and Japanese airlines, and eventually we found a flight with Qatar, which was still letting passengers transit through their airport at Doha. I then needed to sort out bookings at the other end, as the flight went to Sydney and I needed to get to the Gold Coast in Queensland and I had arranged for a taxi to pick me up. After I had booked and re-booked everything I could have slept for an hour, but I was terrified that I wouldn’t be able to hear my alarm and that I would miss the flight. So I got up and went back to the airport.

Qantas eventually replied to me 12 hours later, offering 3 flights via London, but I didn’t want to risk going through the rigmarole again. Suffice to say, I’m never flying with them again unless I can help it.

When I landed at Sydney airport, they were screening passengers. We were given masks and told to line up. No one was observing the 1.5m distancing rule. When I stood back in the queue to keep my distance, a teenage girl & her father took the spot in front of me that I had created! That was annoying but I was too tired to point it out to them.

The masks made lipreading impossible. I rely on reading a whole face for clues, so not only was I unable to figure out what people were saying through lipreading, but half my usual information was cut out. At the end of the queue we had our temperature checked and were gathered into groups so that a doctor could explain the rules regarding self-isolation. I told him that I was deaf and needed to lipread. He couldn’t remove his mask so instead took me aside and spoke to me loudly (which in ordinary situations is offensive, as I need clarity rather than volume, but this was no ordinary situation). At immigration, the woman behind the desk unleashed a torrent of words, so I had to put my hand up to stop her and explain again that I couldn’t lipread, and she kindly pulled her mask down.

I caught a cab to a hotel nearby, and the next morning flew to the Gold Coast, where a policeman read out the instructions for quarantine to me again. I took my re-booked cab down into New South Wales so I could go into quarantine at my parents’ holiday house (sans parents). I luckily missed the government’s directive to quarantine in a hotel for two weeks, which would have been painful. My significant other and I discussed whether I should go into a hotel in Brisbane, because I didn’t want to infect him in case I was sick, but it was expensive and I couldn’t bear the thought of being confined in so small a space. At least in my parents’ house I had space to roam around.

V grateful to a good friend who stocked up on food & boozo for me.

I was highly aware that I was very privileged to have a place to go to and that this option wasn’t available to most people (a colleague mentioned that some of the Rachel Carson Center students were living in dorms and were vulnerable to catching Covid-19). I was lucky to have a good friend not far away who could buy me some groceries so that I had food when I arrived, and that she put me in touch with another friend who could also help with my shopping while I was in quarantine. So although it was a terrible ordeal that certainly wasn’t helped by the perpetual anxiety that accompanies deafness, it could have been worse.

As it was, I did get sick with a sore throat and a cold and panicked a bit. I contacted the hotline, and the lady told me to go to a fever clinic.

‘But I don’t have a car,’ I replied.

She hummed and hawed, consulting her notes, then said, ‘You can catch a cab or ask a friend to take you, but you both have to wear masks and then they must self-isolate for two weeks.’

‘I’ll just call the local doctor,’ I said.

The doctor also told me to go to a fever clinic. I explained again that I didn’t have a car. The nurse had said to call an ambulance if I was so breathless that I needed to catch my breath between words. I certainly wasn’t at that stage, so I said to the doctor, ‘I’m not dying.’

‘Just keep isolating and monitor your symptoms.’

I had a thermometer with me and my temperature was fine, and congestion is not a COVID-19 symptom, so I figured my symptoms were the usual ones of chronic fatigue, which is not surprising given the stress I had gone through.

I had six weeks on my own, which mean some seven weeks in total without properly interacting with human beings, as I was isolating myself in Munich. It was really hard work, but not a completely foreign state of being as I have spent much of my life on my own due to my deafness.

My parents finally visited last week. They will winter here, & when they go I’ll find a way of returning to Brisbane (the bus may be running again by then). My mother has dodgy lungs, so if I want to see her I can’t risk going too far afield in case I catch something and bring it back, because the virus will kill her. I miss my significant other, although he, being an introvert, is having the time of his life. I figure that as I wasn’t going to see him until June (so much for that trip to Sicily!), another few months won’t matter so much.

I was heartbroken to leave the Rachel Carson Center, as well as my other fellowships. It looks like my academic career is in ruins as I only have 9 months left on my contract when I return in February (it was meant to be 2 years, until HR & the HoS informed me otherwise just before Christmas). Nine months is not enough time to put together and administer another research grant, and I don’t even know if my heart is in it anymore because the neoliberal university has proved to be such a pressurised place to work, particularly for staff with disabilities, to whom it is largely indifferent.

I’m trying to find silver linings. For the first time in nearly a decade I have untrammelled time to write and, importantly, to rest. I need this time desperately to write the novels have crowded my brain. I also need to get over my chronic fatigue & become fitter and I need to have a life again. Flogging myself to death for my career wasn’t worth it, because now there aren’t any jobs, and I expect the research funding will be cut back.

Despite the tragedy 2020 has already wrought for me and so many others, I remain hopeful. Deafness taught me to become a problem solver and, from past experience, if I think hard enough I can usually come up with a solution. I will find a way back to academia, although it might take me years. In the meantime there is the beach with butterflies riding the breezes to find salt; kookaburras and fruit bats in the patch of rainforest behind the house; and unspooling time in which to read and write.

Review of 'The Mysterious Box' by Dorothy Cottrell

Over at The Australian Legend, my blogging pal and sometimes-correspondent and yet-to-be caffeinating acquaintance Bill is running his annual spotlight on Australian women writers. This year he is up to Generation 3, which consists of women who wrote between 1919-1960. Dorothy Cottrell featured on one of his lists, and as I’m planning to write a book about her one day, I thought I would revisit her writing.

Cottrell was born in Picton, NSW in 1905 and contracted polio five years later. She spent the rest of her life in a wheelchair. This didn’t stop her from attending art school, moving to her uncle’s farm and becoming a crack shot with a rifle, eloping with her uncle’s bookkeeper to Dunk Island, moving back to Sydney to make money from her drawings, and then to American to escape the tax office because she was so successful. In America, she and her husband sailed around the Caribbean in a yacht and she continued to publish stories in newspapers and magazines. A couple of films were also based upon her work (for eg Wilderness Orphan based on a pet kangaroo).

With the encouragement of Mary Gilmore (herself a writer whose style shifted from Victorian to the more experimental Modernism), Cottrell published her first novel The Singing Gold in 1928. In an essay in a special issue on Modernism published in Queensland Review a few years ago, I argue that this heavily autobiographical novel is an example of Modernism (which has traditionally been considered in the context of urban life) transposed to the regions. It’s a very visual novel, which is not surprising as Cottrell trained as an artist in Sydney with Datillo Rubbo, and her sketches and paintings show the broad brushstrokes and geometric planes of Modernism. In The Singing Gold, a scene of droving in the dry and dusty outback, attended by flocks of tiny larks that hover over the sheep, is transformed through long, lyrical sentences into a vision of lustrous, shimmering gold (see here for the passage that knocked my socks off). This novel also focusses on the quotidian, another feature of Modernist writers, particularly female Modernist writers and artists (think of Margaret Preston’s paintings of native flower arrangements).

The Cottrells’ move to America coincided with the Depression, so Dorothy abandoned Modernism and began to write more commercial work to bring in money. Her plot-driven stories were serialised in the Ladies Home Journal, among others, and feature romances and life on the high seas, drawing on her love of sailing - the wheelchair didn’t stop her there, either – the Australian Dictionary of Biography states that ‘with an adventurous spirit and 'resolute recklessness', she would board any boat that would take her wheelchair—she once returned to Florida in a 24 ft (7.3 m) ketch.’

In this sense Cottrell broke free of the throttling post-war conservatism that, as scholar Susan Sheridan discusses in her 2001 Dorothy Green Lecture, shoehorned women into femininity and domesticity. As Sheridan points out, women were actively making art during this period, but were described as creating ‘in their spare time’ so as not to rock the boat. Thea Astley, Sheridan writes, ‘tells a horror story of how she felt she had to “neuter” herself, to take on a masculine narrative stance, in order to be taken seriously as a writer.’ Female poets such as Judith Wright fared a bit better, possibly because of male mentors such as Douglas Stewart, poetry editor of the Bulletin, and because poetry tended to escape the censor’s pen.

Cottrell, sailing in the clear seas of the Caribbean rather than the hotbed of anti-communist and nationalistic fervour of post-war Australia, was motivated by a different set of concerns. The most obvious of these, as mentioned above, was the need to make money; another was her wanderlust (she said that if she had travelled less, she might have written more) and a third was her love of the natural world. This latter is what I enjoy most about her work, particularly her descriptions of its sensory profusion and its force (hurricanes feature often in her stories). However her depictions of Caribbean people grate on me (there is usually a white saviour), even as I recognise that Cottrell was of her time.

Being in Munich rather that Brisbane, where I could have gone to the State Library of Queensland to look up Earth Battle, Cottrell’s second novel which I’ve been meaning to read for years, I’ve selected one of her stories saved in my folders, ‘The Mysterious Box,’ published in The Saturday Evening Post on 26th June 1954. The story opens with a Caribbean man, Daniel, on his way towards his boat on the shore. He stops to part the ‘heart-leaved trees’ to see a dilapidated cottage on which he has his heart set to make his home (complete with a pearl-grey cat). However, he feels (and must have felt before) a terrible sense of loss ‘for the non-existent cat, for the brilliance and perfection of the cottage as it could be and was not.’

I thought this was going to be another tedious story along the lines of ‘Hurricane, North Atlantic’ published in The Saturday Evening Post in 1947, in which the white doctor and his wife struggle to save an island’s inhabitants during a hurricane (and the wife, who has told her husband she is leaving because she’s sick of island life, suddenly realises how much she loves him and decides to stay, blergh), but the next few lines of the story diverted me. Cottrell continues Daniel’s story: ‘Threading through the final stunted mangroves bordering the sound, [Daniel] considered the three things that put the cottage beyond his reach: the poorness of the islands, the fact that he was black, and the fact that he was “simple”.’ I was interested because of the mention of disability, race and poverty, and read on to see how Cottrell treated these subjects.

As a 25 year old captain, Daniel, who was preparing dynamite to blast a pathway through the reef (I’ve read of this happening a few times in Cottrell’s stories, it must have been a common technique), accidentally sets off the dynamite, killing his young wife and damaging his head. Cottrell describes Daniel’s disability thus: ‘It took him longer to think of things than it took other men; longer to make a reply. But he was also much closer to the birds and the animals and the insects than were normal people.’ 

Daniel’s perspective offers Cottrell an opportunity to pen her detailed descriptions of the living world: ‘he noted now that the sound was full from the east wind and that where the salt water lapped in round the little mangroves it was very clear; part sky reflections, part glimpses of submerged roots and rock, part shadow patterns of the little trees. And on the exposed rock were segmented ice plants and the brighter green of purslane – that had made new leaves since yesterday – while the lappety, floppety slap of the sea was a whisper and a running tune.’ It’s lovely writing.

Here, too, is evidence of Cottrell’s plotting: create a character, create enough sympathy for that character to enable the reader to root for them, and then put something in the character’s way to make the reader read on to see if the character gets what they want. Daniel creates beautiful quilts and embroideries, and ‘each year he sold one quilt locally to pay for materials and for the postage on the rest, which were sent to delight children who would never walk again.’ That engendered my sympathy for Daniel, perhaps also because it’s clear that Cottrell is drawing on her own experience here.

However, I didn’t buy her depiction of Daniel as someone who is intellectually impaired. Daniel’s close observation of the natural world leads him to contemplate the crabs on the beach that collect pieces of jewellery in their claws. After searching the area for six months, he unearths some treasure (the ‘mysterious box’ of the title) while diving in a storm. The only way that Daniel seems different to anyone else is his need to ask an elderly fellow inhabitant, Granny Fich (who seems to have seizures, if I interpreted ‘fits’ correctly) what he should do with his heavy spoils. Daniel muses that he wishes the island’s commissioner, who had once been kind to him and commented favourably on his quilts, would tell him what to do. Granny Fich recommends that Daniel hide the box in a watermelon in a crate and take it to the commissioner.

Daniel sets sail for the commissioner’s residence, but the watermelon begins to suppurate in the heat and the captain threatens to throw it overboard. Daniel is adamant about holding onto the melon and an interesting switch occurs: it is thought that because Daniel is intellectually impaired, he shouldn’t be parted from his attachment. He is allowed to keep the melon, and when he docks he takes it to the commissioner, benefits from his spoils and buys his house with the pearl-grey cat and some proper black tea for Granny Fich. Cottrell, although she positions Daniel as subordinate to white people, at least recognises and seeks to convey the inequality created by structures of capitalism, colonialism and ablelism.

I don’t know how well this story fits into Bill’s discussion of the defining features of Gen 3 – Modernism and social realism – because the story isn’t Modernist and I think it’s romantic rather than realist. However Cottrell has largely been forgotten in analyses of Australian literature, which seems remiss when her time on her uncle’s station at Ularunda and on Dunk Island indelibly shaped her writing and her adventurous spirit. If these spotlights are about drawing attention to (still overlooked) women writers in Australian literature, Cottrell should be on the stage.

On Deafness & Creating a Living

Yesterday I gave my last lecture for the year, on Position Doubtful, a marvelous book about author Kim Mahood’s attempts to reconcile white and Indigenous modes of representing the Australian desert. We are also in the National Week of Deaf People, so I thought it worthwhile to pen some thoughts on teaching and writing as a deaf person.

This was the fifth lecture I had written in as many months. I always underestimate how long they take to put together, and how long they need to be – about 6,000 words, because I speak fast. As I walked to the ferry after work I did the calculations and realised that, instead of those lectures, I could have had a third of a book written by now. I put that thought out of my head, because I enjoy teaching. It forces me to explore new ideas, I like the buzz of interacting with students in my tutorials, and it makes me a better scholar and writer because I’m studying texts in detail and examining how they are put together. This course, which was on Women Writers, also gave me an opportunity to discuss topics that are meaningful to me: feminism, the environment and disability, among others. I also organised a series of marvellous guest lecturers - Melissa Fagan, Marianne de Pierres, Shamara Ransirini, Marg Henderson and Caitlin Francis - who were passionate thinkers and writers about female authorship and the conditions that shape it.

Speculative fiction author Marianne de Pierres giving a lecture on Octavia Butler's Fledgling, with a poltergeist overhead.

However, for someone like me with little hearing, who is conducting lessons through speaking and listening rather than sign language, teaching is much more demanding than for someone with all their hearing. Giving a lecture is a performance which takes physical and mental energy, and tutorials are even more difficult. I need to use all my energy to listen, lipread, and work out where voices are coming from, although my students are very good and raise their hands to get my attention. My FM is helpful, but I still need to be on my toes to get everything. If the class had been any larger I might have been able to ask for additional help through an aide, but as it was I was able to get by.

I knew teaching would wear me out, but I agreed to convene the course this semester because I need the experience – if I can’t find another research-focussed job when my contract ends, I’ll need to get a regular academic job which does involve teaching. It’s not the best option, but it might be the only one. Besides, academia is a nice way of paying the bills and satisfying my craving for new ideas, and if exhaustion comes with that, it’s just a price I pay. I could find a job that doesn’t need much hearing & which bores me, but for someone who finds boredom stressful, this is not a good option.

Lecturer & tutor Shamara Ransirini (far right) chairing a panel on intersectionality at the Brisbane Writers Festival.

I’ve been thinking about these things, and the kind of options available to me and other deaf folk in terms of creating a living, because a while ago I was approached by Connect Hearing to describe my career path into writing and academia. I became a writer because I loved reading and I was good at English, and I needed some way of expressing the frustration and loneliness of being deaf in a hearing world. Being a writer never brings in enough cash, though, so I needed another job to survive, and academia allows me to continue to write, although in different forms.

I was really interested to read of the other pathways for creative deaf people mentioned in Connect Hearing’s interviews. Many of these are physical, focusing on the body and its expression, such as Vulcana Women’s Circus, Riverside Theatres and Bust a Move. QArt Studio in Kew, Melbourne, offers support and training to artists, while HoneyBee Creations enables deaf people to explore and participate in creative arts. I identified with many of these options and the comments made by their representatives – I love dance and moving my body; I like making art with my hands because I don’t have to listen and I can focus entirely on what’s before me; and, as I have written many times before, deafness is inherently creative because it forces you to problem-solve and think laterally. So I identified, too, with Lisa Miller of HoneyBee Creations when she described herself as someone who thinks outside the box. I particularly appreciated her comments on staying positive, and focusing on what you are good at. I think this would apply to anyone, whether with a disability or not.

I have a lull next week before my marking comes in, during which I’m going to catch up on my research, and then I’m going to Melbourne to see the Dior exhibition. After all that hard work, surely some frocks must be on the agenda!  

Days in the Life of a Deaf Woman

A little while back I went to a play at La Boite Theatre at QUT which a friend had written. I really wanted to see the play because I knew she’d been working on it for a long time and it had received rave reviews. However, I’d previously been to The Wizard of Oz at La Boite in 2013 and hadn’t been able to hear it because the loop system wasn’t working. My experience with loop systems is that they’re rarely fixed and my complaints go unheeded. Nonetheless, I really wanted to see the play.

So I bought a ticket for myself and my b/f and phoned the theatre beforehand to check that the loop system was working.

‘Yes, it’s working,’ I was told.

My b/f & I went to La Boite, had a drink and located the theatre manager, who said we needed to sit in a particular spot and that she would reserve those seats for us. She mentioned she had also reserved seats for another deaf person and her friend. Inside we found the seats. I put my hearing aid on its T switch, which picks up sound from the loop system and cuts out background noise. It wasn’t working.

I introduced myself to the lady who was sitting next to me and asked if she was deaf.

‘Yes, I am.’

‘I’m deaf too. Is your hearing aid working with the loop? Mine isn’t.’

She tried her T switch. ‘No, it’s not working.’

We consulted the manager, but she couldn’t get the technicians to fix it before the play started. Nor could she sort it out at half-time. At least I had a nice chat to the lady next to me, who signed and worked as a translator.

Meanwhile my b/f laughing uproariously throughout the performance and I felt left out.

At the end of it, the manager was hugely apologetic and offered for me and the other lady to come back and watch the play again, but I knew it was pretty much booked out and I wanted other people to have the chance to see it, and I was flat out at work. Besides, a similar situation had happened some 15 years before at the Sydney Opera House, when I was invited to see a play again after the staticky loop system made hearing anything impossible. However the magic had gone. The manager with whom I was dealing was so terrible that I never went back to the Opera House again, except to see dance performances that didn’t need hearing.

The manager at La Boite also asked - and I could see she was trying to be tactful - how deaf I was. I don’t have a speech impediment so people don’t always believe me when I tell them I’m deaf, or forget very quickly how little hearing I have. I guess she was checking that I wasn’t faking it, but I was annoyed. My b/f reassured me it was just that I challenge the idea of what a conventional deaf person is, which is precisely why I tell people that I’m deaf. I also had the sense that, if the lady who was also deaf hadn’t been with me, I would have been disregarded (which has happened frequently before).

However, the manager’s response was certainly a damn sight better than of the staff at the South Bank Cineplex around the same time, when I went to watch La La Land. The last time I’d tried this cinema was in 2006, when I watched Happy Feet with my sister and her kids. I figured that, in eleven years they would have worked out that it was discriminatory not to have any means of helping deaf or hearing impaired people at their cinema.

I approached the counter. ‘Do you have a loop system that will help me to hear the film?’

‘No, sorry, we don’t.’

I was too tired to be surprised or to put up any kind of a fight. I walked out. They didn’t deserve my money.

A few weeks later I went to a World Science Festival talk at the Queensland Conservatorium a few weeks later and found the loop system was too faint to hear (despite have called beforehand and mentioned this to them, as it was quiet the last time I used it when I went to listen to Elizabeth Gilbert). The nice man on the door offered to seat me down the front but I was totally disheartened.

‘Forget it, I can’t be bothered,’ I told him.

I was sick of having to stand up for myself, and tired of the consistent message I was getting: that people simply don’t care. Later that week, I emailed the World Science folk to see they had made a recording of the talk that I might be able to listen to with headphones, but I didn’t receive a reply.

It’s sometimes hard to feel relevant to a society that, for all of your life, has shown that it doesn’t really give a damn about deaf people. However, I doubt that I’m alone. Australia has become meaner and harder and nastier and more small-minded since John Howard. I'm sure refugees, people of colour and Indigenous Australians feel like me a lot of the time.

If more places made more of an effort for their patrons with disabilities, they’d probably sell more tickets – not just to the folk with disabilities, but to the family and friends they bring with them. It makes economic sense to try harder.

At the end of the evening at La Boite, before my b/f and I walked away, I said to the manager, ‘Thank you for caring, because no one else ever has.’ She had tried, and that alone made me feel like it was worth coming back to listen to another play.

Review of Defying Doomsday

When I worked at Autism Queensland, where my job was to inform employees about the latest research in autism, I read an article about the experiences of young people with autism spectrum disorder (ASD) immediately following the 2009 L’Aquila earthquake in Italy. People with autism often rely on routine and sometimes process sensory information differently to typically developing folk. Unsurprisingly, the study found that the adaptive functioning (ie the skills they use to adapt to everyday life) of the young people with ASD declined after the earthquake.

I thought of this study as I read Defying Doomsday earlier this year. This collection of short stories was edited by AWW’s own Tsana Dolchiva and Holly Kench, who noticed that there was a lack of characters with disability or chronic illness in fiction about the apocalypse. Likewise, this study mentioned that there was no research on the impact of natural disasters upon people with autism. There is clearly a sore need, in both our real and imagined worlds, for contemplation of disability and apocalypse.

And this seems strange, for people with disability, as Robert Hoge writes in his introduction to the stories, ‘live in a post-apocalyptic world. Stairs remain at stubborn right angles. Communications can wash over us, unheard, unseen. Some social interactions elude—a millimetre away, a mile away … So much of our world is a not-made-for-us space that disaster may as well have already struck. And that’s exactly what makes the stories in this anthology so crunchy and interesting—we are already fighting and thriving in interesting and diverse ways. When the apocalypse comes, we’ve got a head start.’

It’s a great note to begin with – people assume that when the world falls apart, people with disabilities will be a burden, but these stories challenge that idea. There is a character with autism – Holly – who keeps herself alive through precise measurements of when the lethal rains will arrive, and by methodically sealing of her clothes with tape before she sets outside (‘Something in the Rain’, Seanan McGuire). Most of the neurotypical people she knows, by contrast, are caught by the rain, and dissolve.

The story I enjoyed most was Tansy Rayner Roberts’ ‘Did We Break the End of the World?’, not only because it had deaf protagonists but because it was very well crafted, with a twist that related to the characters’ hearing. The characters have personality and verve, with different degrees of deafness – Jin can sign and also uses hearing aids, and takes them out when he needs some peace or when he’s pissed off and wants to ignore someone – I found it a very good representation.

I also liked ‘Octavia Cade’s ‘Portabello Blind’, which follows a blind, fourteen year old girl deserted in a research lab in Dunedin. Anna knows the layout of the buildings, but when it comes to catching food such as fish, things get difficult. The sensory detail is pronounced, as it is for most people who lose a sense – their brain compensates by finding extra information through their other senses. In Cade’s story, this adds a richness and precision to the writing: ‘There were life jackets in the shed. She put one on and it smelled of salt and rubber, of plastic. The life jacket had a whistle attached: a sharp, high sound like a gull.’ And ‘Anna could smell the tides, knew when they were out. The soft-sweet scent of mud was a dead giveaway.’ Although it’s a muted story, the reader identifies with Anna’s sense of achievement at learning to survive. This, I think, is the best thing about fiction - it puts readers in other people's shoes and helps them to imagine what life is like for those who have disabilities.

The stories are set in towns, cities and outer space, but there isn’t a whole lot of nature throughout, which I thought was strange. Even in an apocalypse, nature persists, and can be the cause of apocalypses too (as with the Italian earthquake). The protagonists are also all fairly young. This is no bad thing, particularly as there’s a lack of positive young adult literature about people with disabilities in general, as I wrote in a post for a focus on Australian women writers with disability at AWW in March. However, disability affects people of all ages, and I was left wondering what it would be like for parents or grandparents with disability, for example, who needed to care for their families in an apocalypse.

These are minor quibbles, though, in an anthology that shows people with disability negotiating difficult circumstances with ingenuity, stoicism, and a sense of humour – the qualities that get us through our everyday lives in the 21st century.

This is my third review for the Australian Women Writers Challenge.

H is for Hawk, Perception and Disability

When I was young we had a ginger cat named Vincent to whom I was passionately attached. His mother had bred with one of the feral cats on the farm and he was a muscular and unlikeable creature. I spent hours trying to understand him and win him over. For the most part that was fruitless, but sometimes he’d deign to sleep in the curve of my back as I lay on my tummy on my bed.

I can’t remember if my interest in animals started with Vincent, or if it was because I grew up on a farm and, while my father and uncles worked, I watched the way sheep bustled in a herd; how hipbones jerked beneath the skin of our cows as, in the evening, they were jostled to the milking shed; or the large, liquid eyes of my aunts’ horses.

When I began researching the history of the deaf, I found, people with disabilities have long been regarded as closer to animals than humans. Deaf people, for example, were seen as subhuman because they could not hear the word of God and because they couldn’t speak clearly.

Which is why I loved reading Helen McDonald’s H is for Hawk, her memoir about training a goshawk in the wake of her father’s death. Aside from the originality of the subject matter and the poetry of her writing, it brought up many interesting questions about the relationship between animals and humans, between wildness and domestication, and where the line between the animal and human really lies.

Hunting with her hawk, McDonald writes, ‘took me to the edge of being human. Then it took me past that place to somewhere I wasn’t human at all. The hawk in flight, me running after her, the land and air a pattern of deep and curving detail, sufficient to black out anything like the past or the future, so that the only things that mattered were the next thirty seconds … I crept and walked and ran. I crouched. I looked. I saw more than I’d ever seen. The world gathered around me. It made absolute sense. But the only things I knew were hawkish things, and the lines that drew me across the landscape were the lines that drew the hawk: hunger, desire, fascination, the need to find and fly and kill’ (195).

I paused after reading this passage, considering it with some suspicion, as humans are animals, and the division between us largely — I think — comes down to culture. In 1747, Carl Linneaus, who developed a system for classifying plants and animals (still in use today), defended his decision to separate apes from humans as thus: ‘if I had called man an ape, or vice versa, I would have fallen under the ban of all ecclesiastics. It may be that as naturalist I ought to have done so.’

Nor does heightened perception make one more animal that human. People with disabilities have extraordinarily developed senses – a person who is blind, for example, will be remarkably attuned to sound and touch. To see like a hawk does not necessarily mean that one is becoming like a hawk; it means that a human is developing their sense, rather like becoming better at the piano through practice. I think we need to widen our understanding of what it is to be human, to include those who have what seem to be extraordinary abilities. One might think that I’m writing of savants, but really, it’s anyone who operates in a way that’s different from the norm. If ‘human’ becomes more inclusive, then we can do away with the category of ‘disability’ and its concomitant inspiration porn, as Stella Young described it.

McDonald continues, ‘every time the hawk caught an animal, it pulled me back into being a human again … hunting makes you an animal, but the death of an animal makes you human’ (196), for she killed the animal to put it from its misery. This was interesting. Again, is it culture that makes McDonald act this way? Can it be said that it’s grace that makes us distinct from animals? Or do other animals behave this way as well?

While these passages made me question things, there were other parts of McDonald’s work that were gorgeous – her nature descriptions, her magical thinking, her tentative but developing relationship with Mabel, the hawk. And this passage:

‘I am beginning to see that for some people a hawk on the hand of stranger urges confession, urges confidence, lets you speak words about hope and home and heart. And I realise, too, that in all my days of walking with Mabel the only people who have come up and spoken with us have been outsiders: children, teenage goths, homeless people, overseas students, travellers, drunks, people on holidays … I feel ashamed of my nation’s reticence. It’s desire to keep walking, to move on, not to comment, not to interrogate, not to take any interest in something peculiar, unusual, in anything that isn’t entirely normal.’

McDonald and Mabel are a paean to difference, to flight, to the permeable boundaries between ourselves and other creatures.

Submission to Inquiry into Arts Budget Cuts

RE: Impact of the 2014 and 2015 Commonwealth Budget decisions on the Arts

Dear Madam/Sir,

My name is Jessica White and I’m a writer and researcher based in Brisbane. As of next year, I will have been writing for twenty years. My first novel, A Curious Intimacy, was published by Penguin in 2007 and won a Sydney Morning Herald Best Young Novelist award, was shortlisted for the Dobbie award for debut women writers and the Western Australia Premier’s awards, and longlisted for the international IMPAC award. My second novel, Entitlement, appeared in 2012, also published by Penguin. My short fiction has been published in a range of literary journals, including Southerly, Island, Overland and the Review of Australian Fiction. I was recently shortlisted for the 2015 Commonwealth Short Story Prize which attracted nearly 4000 entries from around the world.

I am also a researcher and non-fiction writer. My PhD at Birkbeck College, University of London, was funded by a scholarship from the University of Melbourne. I have been shortlisted for the Calibre essay prize and Peter Blazey Prize for life writing, and my essays have been published in Griffith Review, Southerly, Island and Cordite as well as national and international academic journals.

I have been deaf since I was four, when I lost most of my hearing to meningitis. My disability was responsible for my decision to become a writer and it has also strongly influenced my subject matter and style. I am passionate about giving space to voices which have been overlooked, including those of people with disability.

In 2013 I was the recipient of my first ever grant, $5000 from Arts Queensland, to further my research on 19th century Queensland novelist Rosa Praed. In the course of that research, I located new archival material in England relating to her daughter Maud, who was deaf. This included a 17 page letter Maud wrote to her doctor and, given the history of the suppression of the voices of the deaf, this find was of immense significance. My research on Maud has been woven into a memoir which will help general audiences understand the history and impact of deafness, which is surprisingly little known.

This grant gave me much-needed recognition, particularly in Queensland where I was a relative newcomer. In 2014 I received my first grant from the Australia Council for the Arts ($9,820) from their Artists with Disability programme to write a novel, The Sea Creatures, which is almost completed. In June 2015, I was fortunate to receive a New Work grant from the Australia Council ($15,750) to write a young adult novel, When the World Shivered. Both of these books are about disability, and once they are published I will take them into schools and use them to prompt discussions about disability, and to show that the lives of people with disability are of worth. I am not using these grants to write esoteric pieces of art, but to help knit together our social fabric.

I have been applying to the Australia Coucil for funding since 2008 and these grants were from my 11th and 13th applications respectively. Although they are not large grants, their impact on my life cannot be understated. They have given me the time to write and mean that I do not have to take on additional teaching work to survive (something that, because of my disability, makes me too exhausted to write). They have given me financial stability, which means that I can think about having a family before it’s too late (something I’ve put off because the life of an artist, let alone one with a disability, is precarious at the best of times). They have also allowed me to become financially independent of my parents, who supported me repeatedly while I found my feet as a writer and learned to manage with a disability.

My tenacity in applying for these funds came from desperation: without that money, I would not have been able to write. I have heard many artists say that they have been put off by the competitiveness of the Australia Council’s application process for funding, and I don’t blame them; it is no easy thing to be rejected year after year. Yet I often wonder about these people, and the books they would have written or the art they would have created. How much more culturally enriched would Australia be if the Australia Council had the money to fund these artists?

You can see, then, that George Brandis’s cut of $104.8 million from the already-tight budget of the Australia Council will have huge ramifications, not least by limiting the voices of emerging writers and those with disability. The arts in Australia are in threat of becoming homogenised.

In addition, the new funding mechanism, the National Programme for Excellence in the Arts (NPEA), does not have the same arms-length peer review process as the Australia Council and decisions will be up to the Minister. These undemocratic overtones are alarming, but not unsurprising from a government whose language ever more closely resembles the doublespeak of George Orwell’s dystopian novel about totalitarianism, 1984. In 2014, for example, there was a budget crisis, but in 2015 the Arts Minister thinks it fit to waste money but duplicating administrative processes through the NPEA.

In 2012, Anna Funder won the Miles Franklin Literary Award for All That I Am, a novel about the insidious creep of Nazism in the 1930s. In her acceptance speech, she criticised the then Queensland Premier Campbell Newman who had just binned the Queensland Premier’s Literary Awards (one of his first acts of parliament). ‘I have spent my professional life studying totalitarian regimes and the brave people who speak out against them,’ Funder said, ‘And the first thing that someone with dictatorial inclinations does is to silence the writers and the journalists.’ It is telling that there is no mention of literature or writing in the NPEA guidelines.

I have been deaf for as long as I can remember and I know what silence and silencing can mean. Artists reflect the culture that is around them. A government that hobbles the creativity of artists by cutting off funding is a government that does not want to listen to what is said of the society it moulds.

After World War Two, my relative Patrick White returned to Australia from England. In 1958 he published an essay, ‘The Prodigal Son’, in which he wrote of his experiences of returning. He commented, ‘In all directions stretched the Great Australian Emptiness, in which the mind is the least of possessions.’ Given the attenuation of the Australia Council through budget cuts, and the meagre amounts offered to artists in general, we are at risk of returning to the culture of which Patrick White wrote. Furthermore, what chance does Australia have of finding a new Nobel Prize for Literature winner when the NPEA guidelines make no mention of literature or writing? How will we find the emerging voices of Indigenous people, migrants, people with disability, or queer/gay writers when many of these minorities, as you can see from my own experience, are just struggling to get by, let alone make their art? Is the voice of Australia to become one that, as Patrick White was panicked to find, merely exalts the ‘average’?

As an emerging author with a disability, the Australia Council has irrevocably changed my life. It distresses me deeply that so many other artists may not have the funding they need to practice their craft or acquire recognition. I urge you to reverse the cuts to the Australia Council – it is so little money, and yet to Australia’s artists and Australian culture, its worth is inestimable.

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.

A Talk for ANZCED

It’s been a while since I posted in this beleaguered blog, as I’ve been gallivanting around the country.  H & I travelled to far north Queensland so I could do research for my next novel, then we dashed to Parental Unit’s as our mum was unwell, then I had a week back in Brisbane, then flew to Sydney for the Australian Society of Authors congress.  More on these excursions later.  In the meantime, I wanted to pick up where I left off in my last post.

I finished up at the ASAL conference early and caught a cab through various paddocks to the Wagga Wagga airport with the lovely Lydia Weaver, who organised the conference in Wellington last year.  From there I flew to Sydney and thence to Brisbane, caught a cab home, changed into my favourite frock from San Francisco and my red boots from London, and caught another cab to the convention centre, where I was to deliver a talk to attendees of the Australian and New Zealand Conference for the Education of the Deaf.

I was raised as a hearing person because we lived in a remote area, so attending the local primary school was the only option.  I never learned sign language, aside from some finger spelling that my itinerant teachers taught me, so to be in a room full of people who were signing, on a balmy Brisbane evening no less (which was wonderful for thawing out after Wagga), with the lights of the wheel and the city beyond, was magical.

After the welcome to country by an Indigenous woman, there was a talk by Karen O’Reilly whose mother Carol O’Reilly was an incredibly strong deaf woman who had travelled around collecting stories by deaf Australians.  She compiled two books, Deaf Australian Stories, which are available for purchase.  I then gave my talk, the transcript of which is below.

It was a morning in early summer, on our property in northwest NSW.  I was nearly four years old, and lay on the pale blue trampoline beneath our apricot tree.  My head, neck and shoulders were awash with pain.  The light chill in the breeze scraped against my skin and the sunlight, normally soft and dappled, speared through the green leaves of the tree.  Everything was abnormally bright, with a photographic crispness.

My mother appeared at the side of the trampoline.  ‘How are you feeling?’ she asked.

I shook her head, unable to answer.  

My mother stood there for a few minutes more, unable to dispel a strong sense of disquietude.  Then she went inside, changed her farm clothes for a skirt and blouse and collected her handbag.  She found my shoes and scrawled a note for my father.

Back at the trampoline, she wriggled the shoes onto my feet.  ‘We’re going to town,’ she told her, ‘to see the doctor.’ 

‘Okay,’ I said quietly.

The local doctor in Gunnedah was a family friend.  When he saw me, after the half hour trip into town, his movements became quick and urgent.  He suspected meningitis, and I was to go to Tamworth Base Hospital immediately.

My mother drove for another hour over poor tarmac roads.  Sweat formed beneath her hands and the steering wheel became sticky.  She watched me through the rear vision mirror.  I had closed my eyes, but whether from tiredness or pain it was impossible for her to tell.

At the hospital in Tamworth, she watched in horror as, holding me down, the doctor drove a needle into my spine.  The results confirmed it was meningitis.  The doctors gave me a massive dose of antibiotics to kill the infection, and after that there was nothing for it but to wait.  In the morning, my eyes opened, and the adults held their breath.  I blinked: ever-combative, I had won.

A few weeks later, however, my parents realised that something wasn’t quite right, for I kept asking them to repeat things.  We went back to the local doctor, and then to an audiologist in Tamworth.  Hearing tests confirmed that I was severely-to-profoundly deaf, with no hearing in my left ear, and half in my right.

This is my first memory.  My second memory is of sitting on the hospital bed with my father as he read me a story about Strawberry Shortcake, although I couldn’t hear him well and it was hard to follow what was happening.  My third memory is of pulling a cardboard box of coloured letters from their place beneath the dresser and of pestering my mother, ‘Can I do my words?’  These three memories, strung together, can be read as a narrative for my own move towards writing.  Meningitis caused my deafness and subsequent retreat into books for solace, which in turn, encouraged me to write.

From an early age, I consumed books obsessively, not just because I enjoyed reading, but because it was easier to move into other worlds than to interact within my own.  My parents had decided to send me to the local primary school at Boggabri, because I was too young to be sent to boarding school in Sydney, and my father was a farmer who couldn’t leave the land.  I had two itinerant teachers, Mr Tony, who was there until Year 2 (I never learnt his last name), and Mrs Tibbits, who helped with my speech therapy.  I remember both these teachers strongly, and rather than feeling stigmatised by them, they made me feel special, and contributed to my self-esteem.  Mrs Tibbits also recognised my skill with writing, and arranged for me to put together a magazine which involved visiting the local police station and interviewing the policeman, who showed me a crop of marijuana seedlings he had appropriated.

I was raised as a hearing person, but because I couldn’t hear much, I constantly felt inferior to my noisy, extroverted, siblings and cousins.  I also didn’t really learn any social skills until my 20s.  As socialising was difficult, I would pick up a book instead of making conversation.  As I grew older, it was only a short step to writing my own voice.  On visiting a careers adviser as I neared the end of my schooling, I was told that I needed a creative outlet to express my frustration with being deaf.  I was amazed that he had sensed my isolation, but perhaps I shouldn’t have been: many Deaf people who belong to a community could express themselves with sign language, but I had no one I could talk to about being so out of place.  As soon as he mentioned creative writing, I knew this was what I wanted to do.  

To my surprise, I found the careers advisor was correct.  I started a double degree in English and Creative Writing at the University of Wollongong, and began writing in a journal, literally pouring my self and my difficulties into page after page, and all the time improving as a writer of short stories, poetry and novels.  In 1999 I spent a year on exchange at the University of California, Berkeley, and a year later graduated with first class honours from Wollongong.  I then won a scholarship to undertake my Masters in Writing at the University of Technology, Sydney, where I wrote my first novel, A Curious Intimacy.  This was published by Penguin in 2007 and won a Sydney Morning Herald Best Young Novelist award, was short listed for the Western Australia Premier’s awards and the Dobbie award, a prize for first time women writers, and was longlisted for the international IMPAC award hosted by Dublin City Council.  Just prior to this, in 2004, I was offered the Sir Arthur Sims Travelling Scholarship by the University of Melbourne to undertake my PhD at the University of London.  My second novel, Entitlement, was released by Penguin in September last year, and is available for sale here tonight.

I’m convinced that these successes wouldn’t have been possible if I wasn’t deaf.  As socialising was such hard work, it was simply easier to focus on my academic work.  Deafness has also influenced the themes that I write about, in both my fiction and non-fiction.  I often write about people who have been marginalised, such as lesbians, refugees or, as in Entitlement, with Indigenous people, for I feel that, as a person with a disability who is also articulate, both in writing and speech, I have a responsibility to speak on behalf of those who do not have a voice.  My third novel, which I’m writing now, is also influenced by my position as a woman who is neither completely hearing, nor completely deaf, and I’m using the figure of a mermaid to explain what it is to be like to be situated between worlds, for a mermaid is neither human nor animal, and belongs neither to the sea nor the land.  

Thus, while deafness has been for me something that is exhausting, isolating and frustrating, it has also been the source of immense creativity and success.  It is also true that, without my teachers for the deaf, Mr Tony and Mrs Tibbits, I would not have received the encouragement I needed to take this path.  So I’d like to thank all of you for your work, and for helping deaf children to realise their dreams.

After the talk, a lady came up to me with Mr Tony’s surname written on a piece of paper, and to my delight I recognised it.  I then sold a whack of books, which was also wonderful.  It was a delightful evening, and I’m so grateful to have been given the opportunity to talk to teachers for the deaf about their amazing work.

Thoughts on the NDIS (from a deaf woman)

This morning I made it back into the pool for the first time in two months, due to various permutations of cold/flu/sinus infection that have left me perpetually exhausted.  It was delicious it was to be back in the water, stroking through my very slow laps with the sun falling onto my back, and as I swam I thought about people who couldn’t simply get on a bike, ride to a pool, wrestle themselves into their togs and dive in, because they had disabilities, and didn’t have the support they needed to get into the water.

This was a week in which I became immensely frustrated by the manifestation of selfishness across Australia.  After Julia Gillard’s proposal to increase the Medicare levy by half a percent to help fund the National Disability Insurance Scheme, cyberspace exploded with rants on yet another tax, wasteful spending, I-want-to-help-disabled-people-but-I-don’t-want-to-give-up-two-coffees-a-week while, to top it off, the CEO of Myer had the effrontery to suggest that the tax was going to harm business, and made a sloppy, half-hearted apology.  Fortunately, there are sensible writers such as Ben Eltham at New Matilda who point out that the NDIS makes economic sense in the long run because, as he notes, ‘it will bring people into the workforce who are currently unable to work – not just the disabled themselves, but also their carers and family members.’  I’m writing this post because I exemplify Eltham’s argument.

When I was nearly four, meningitis wiped out all but 25% of my hearing.  I have no hearing in my left ear, and half in my right, which is a diagnosis of severely-to-profoundly deaf.  I wear a hearing aid in my right ear, and use an FM system if I attend lectures, or if I’m teaching classes at uni.  I can hear in a group of two other people in quiet situations, but beyond that it’s really hard work as I have to mostly rely on lipreading, which takes an enormous amount of concentration and energy.  Talking in bars is just about impossible, what with loud music and alcohol impairing my concentration, so I usually just give up on socialising and go dancing somewhere.

My father was a farmer who couldn’t leave the land, and I was too young to be sent to the deaf school in Sydney (an eight-hour drive away), so I went to the local primary school of 100 kids in Boggabri with my brother, sister and cousins.  The school had its floors carpeted to help with the acoustics (which wasn’t too hard as it was a very small school), while Hearing Australia paid for my hearing aids and FM system (until I was 21), and for an itinerant teacher to visit me once a week.  Mr Tony was the first one from Kindy to Year Two, and then he was replaced by Mrs Tibbits, who stayed until year 6, and helped with my speech therapy.  I was given the FM system in Year 4 and it was a godsend, because it meant I didn’t have to strain so hard to listen (and they’re even good for kids who do have hearing, because they make the teacher’s voice so clear).  Sometimes the teacher, who was also the headmaster, would forget to turn off the transmitter when he went out so I heard him talking on the phone, and pretended complete innocence when he came back into class.

I went to secondary school in Gunnedah.  My sister was sent to boarding school in Armidale, but that school wouldn’t let me board because they’d had a bad experience with a previous girl who was deaf.  These days, this would have been grounds for suing for discrimination, but Mum wasn’t aware of those kinds of rights then.  As it transpired, we moved to Armidale when I was 15, and I went to the school as a day girl and became one of their top students.

Those years in secondary school in Gunnedah were harrowing.  In the small primary school in Boggabri I’d been fine because I knew everyone there, and my siblings and rellies were at the school.  There were occasions on which I wasn’t invited to birthday parties, or in which the visiting chaplain wouldn’t put me in the nativity play, because I had a disability, but Mum usually came down on those people like a ton of bricks and (nicely) sorted it out.  Mostly it was misunderstanding, and a bit of social stigma, but really, life could have been worse.  As I moved into adolescence, however, social situations became far more nuanced, and because I didn’t have enough hearing to overhear conversations and understand how people communicated, I couldn’t make friends.  I was ostracised, which was an experience so painful that even now, as a confident and capable woman, I still panic about being left out of things by friends.  I could have done with a counsellor then ( and most schools have them these days, which is good), but I eventually worked things out by watching people, and forcing myself to interact (or rather, by obeying my mother, who told me to talk to people instead of reading books).  By the time I got to the school in Armidale I was coping much better, and made good friends there who I still have today.  

On the plus side, isolation meant that I studied and worked hard, and turned to writing as a way to deal with the stress and social soreness that I repeatedly encountered.  My good grades gave me confidence, and my parents indoctrinated me with the belief that there was nothing I couldn’t do and so, even despite the anxiety and exhaustion occasioned by my deafness, I found temping and office jobs each summer to help pay my way through uni.

For the summer between finishing my undergraduate degree at Wollongong and starting my Masters at UTS, I found work as a Christmas casual at David Jones.  Part of the reason for wanting to do a customer-oriented job was because, as a deaf person, people generally thought that I couldn’t do it and, having a perverse and stubborn streak, I like to prove people wrong.  I also genuinely enjoy meeting new people, despite the effort involved with socialising.  There probably were a few occasions on which I didn’t hear a customer asking me for something, as a more experienced staff member who I worked with mentioned she explained to the customer that I couldn’t always hear, but it certainly wasn’t the end of the world.  It would seem that DJ’s is slightly better than Myer in the disabilities department, and if you’d like to pressure Myer into doing something about their appalling attitude to people with disabilities, Graeme Innes, the Disability Discrimination Commissioner, has set up a petition.

Later, when I was living in London and studying for my PhD, I worked on the desk at University College London library, checking out books to students and academics and answering questions.  UCL installed a loop system for me which didn’t work very well because they’d got the cheapest possible model and it broke (although they were obliged to have a decent working system not just for me, but also for deaf patrons), but I hooked up my FM system and that was more successful.  They also gave me a phone with volume on it, and if there was a call that I really struggled with (for example, if the person had an accent) then my lovely colleagues were always happy to help out.

I have also won several scholarships to help fund my studies, including a Study Abroad scholarship to the University of California, Berkeley, and it was there that, for the first time ever, I felt like I fitted in, because it was a place that encouraged diversity.  There were a few problems, in that, in my (ironically titled) Identities Across Difference class, Professor Trinh T. Minh-Ha wouldn’t wear the FM transmitter because, as she said, ‘It changes the way I speak!’  Perhaps she didn’t understand how the transmitter worked, because it only amplified her voice for me, the person who was wearing the receiver, and not for the whole class.  She agreed to have it on her desk, which didn’t really help, and the nice man at the Disability Office said by law she had to wear it, but I was too young and too nice to want to make waves, so I just struggled on.

The reason why I have rendered all this is to indicate that, with help from the government, my parents and siblings, I have become a successful writer and contributing member of society.  I have always been able to find a job and, although I have sometimes been curtailed by the exhaustion of my disability, the accommodations that have been made for me have helped to alleviate this.  I am a well-spoken, intelligent and articulate woman who pays taxes and I AM PROOF THAT FUNDING WORKS.

I understand that people are upset with Labor’s economic mismanagement (as I am too: I was ropable they expect already band-aided universities to make ‘efficiency dividends’ to pay for primary education) and that they’re concerned this money will not be justly spent.  I understand too that things are tight for people who are trying to juggle mortgages, new school uniforms, holidays, cars and, now, disability insurance, but we are a wealthy society (just visit India for a comparison), we aren’t heavily taxed in comparison to other nations and we have so many opportunities that it’s obscene to complain.  

Finally, one day your son, daughter, niece, nephew, granddaughter or grandson might almost die from meningitis, and you’ll be so grateful that they made it through and survived, even with a severe hearing loss, that the one dollar a day you paid through insurance will be the best investment you ever made.