I dance. I fly – dog paddle upwards, a vertical take-off like a helicopter (great for escaping danger), and breaststroke through the sky or glide on updrafts. There is joy in the journey. But back down on earth, leaving the reverie, my physical and attitudinal surroundings are not so conducive to travel. I use a mobility scooter or wheelchair to get around and commuting on public transport from Blacktown to Wynyard Station is closer to a nightmare.
To travel to Sydney’s CBD by train, I load my wheelchair into the back of the car using a hoist. It only takes me about ten minutes to drive to the station, then the search for parking begins. There are notoriously few public car parks near Blacktown Station, let alone disability spaces. At Boys Ave there are 130 spots, and eight of those are for disabled commuters. Say I’m lucky enough to find parking. Then I unload my chair, negotiate holes in the footpath, humps, bumps, and kerbs to get to the station. Wait my turn in front of the lift. The doors open and close. It’s overflowing with impatient commuters. I wait a while before the doors open finally to reveal a space for me. I wait for an attendant to let me through the ticket gate. Wait again for rail staff, who are often stressed and grumpy, to organise the ramp to get me over the gap between the platform and onto the train. Over 6000 commuters pass through the Blacktown station turnstiles on a typical workday during morning peak time, 15,800 people during an average 24-hour day.
In a 2019 9News report, Blacktown residents interviewed said they hardly ever get a seat on the train going to or from work. Standing room only, they’re packed like battery hens on the way to the slaughterhouse. Often the train is too crowded for me to board. When I can get on, I need to manoeuvre my way through the crush of bodies and find a place to hold onto a handrail so my chair doesn’t slide when the train brakes. At Wynyard, there’s another wait. The station attendant needs to put a ramp down and help me off the train. Even if a support worker accompanies me, I’m exhausted by the time I get to work and have a raging headache. My joints and muscles scream in pain.
Generally, I avoid public transport, choosing instead to load my scooter into my car and drive calmly through Blacktown’s asbestos jungle. With lockdown, I rarely travelled to the city and now I’m self-isolating, I work from home as much as I can. Today, however, I need to meet with other creatives in person at the start-up hub where our small arts organisation has a desk. The haunting voice of Karen Chilton reverberates through my car. She narrates the story of Sorrowland by Rivers Solomon, the latest book to satisfy my craving for Afrofuturism and Black speculative fiction. Suburban homes flick by, some just starting their gentrification journeys, moving away from the perceived stigma of working-class existence, to maybe one day, achieve the affluent, leafy, suburban bliss of Castle Hill. I glide past Kings Park Industrial Estate, a car and truck rental, and left onto Sunnyholt Road. Turn right, gathering speed, 100 kilometres per hour to merge onto the M7.
In the first half of her interview, Gaele introduces her upbringing and disability work, her creative methods as a cross-genre wordsmith and her reaction to the Australian bushfires and the current climate emergency.
Leslie: Could you tell the story, please, of how your interest in various forms of writing and disability arts began, grew and developed? How did your early life shape your creativity?
Gaele: I was born and grew up in regional Victoria, Australia. When I was very young, I did the rounds of all the Sunday schools; Methodist, Anglican, Presbyterian, Catholic, to collect books. I liked the stories. We moved around a fair bit but for as long as I can remember, public libraries were the centre of my world. When we lived in a small fishing town where there was no library, I looked forward to the bookmobile that drove in regularly. My parents also paid off a set of Grolier encyclopedias which provided me with hours of reading. We had an Astor radio with two shortwave bands. I discovered Radio Moscow and would listen to their English program. I received books and plastic records from them in the mail. I particularly loved traditional stories or folktales from around the world about magical and imaginary beings. So I would say that access to stories, books and reading during my early life definitely shaped my later creativity.
My interest in writing developed at school, particularly the secondary school I attended in Melbourne, where I had dedicated English Literature and History teachers who encouraged me to write. I kept a journal during that time and, as a teenager, was influenced by the politics of the Vietnam Moratorium and the growing women’s liberation movement.
I remember seeing demonstrations by disabled people on TV but knew very little about disability politics. I did not then identify as disabled. My understanding of disablement as a political concept only came about in the late 1990s when I began to experience impairment that affected my mobility and my access to buildings, transport and events. My involvement in disability arts only really started in the early 2000s when I came back from living overseas for over twenty years. I met with Amanda Tink and Josie Cavallaro at Accessible Arts NSW, who assisted me quite a lot in understanding the disability arts environment in NSW and Australia. At that time, I started writing my body into my work, the way I moved through the world, my experiences with hospitals and doctors. I was part of the first Australian cohort of Sync, a training program presented by the Australia Council for the Arts that focused on the interplay between leadership and disability. The people I met there and the course itself helped me understand that, as disabled people, we can lead through our art and arts work. I founded Outlandish Arts, a disabled-led arts company for disabled artists across all art forms.
I allow unarticulated feelings, thoughts and knowing to direct the course of my poems. Floating, allowing the parts of my brain that daydream, intuit, engage in parallel-interactive logic to take over. Maybe, in the end, poetry is a process of interpreting the knowing that exists within bodily experiences, around the body and between one body and other bodies. Surprises and dilemmas emerge along the way and when I work out which direction to take, I spend time crafting a poem.
Some describe elements of my writing as magical. I see these elements as reflections of cultural realities; myth, turns of phrase, musicality of spoken language, the way imagination can be part of the everyday and accepted by a community as such.
I believe my writing is informed by a combination of the joy of imagining, anger, grief, love and disdain. Growing up working class, losing memory, I demand the right to get grammar and other bits and pieces technically wrong, but seek to be subjectively and poetically authentic.
Disability Arts Online is an organisation led by disabled people, set up to advance disability arts and culture through the pages of our journal. Their raison d’être is to support disabled artists, as much as anything by getting the word out about the fantastic art being produced by artists within the sector.
Disability Arts Online give disabled artists a platform to blog and share thoughts and images describing artistic practice, projects and just the daily stuff of finding inspiration to be creative.
The sky is a dark smoke cloud tinged with orange, it’s difficult to breathe outside. I assist my mother to shower, rubbing shampoo into her hair. I hand her a facecloth to wipe the soap from her eyes. We’ve closed the windows and doors to stop ash from coming inside. It’s hot. I’m disabled, 63 years old and my parents are in their late 80s. My mother is ill and has been in bed for a few months. It is extremely difficult for her to walk to the shower. There’s no electricity due to the fires that are raging up and down the south coast of New South Wales. No TV, no internet, no phone coverage. Emergency calls only on my mobile phone. Web-based fire apps aren’t any good to us. I’ve packed the car ready to drive to the evacuation centre at Moruya showgrounds. We are relying on the static reception of the ABC and a battery-operated radio for local emergency updates. I am impressed by the local knowledge and articulate reports of people who phone in about their experiences of the fires. Their reports are invaluable to understanding the trauma and loss, the ferocity of the fires and the extent of the devastation.
The waiting is frustrating, I feel underlying and suppressed fear. Occasionally, anxiety marks my parents’ voices and actions. My father is blocking the downpipes ready to fill the guttering with water. He is determined to stay and defend the house against ember attacks and perhaps even approaching fire. His truck is packed and facing the road. He says he will go if necessary. There is no use arguing with him. I oil my mother’s finely wrinkled skin, careful not to press too hard; run my hands over her stomach, silently thanking her for bearing my sister and me. Her thighs are smooth, almost youthful, her ankles thin. I help her into pyjamas and bed and leave her to sleep.
*
Now I reflect as I wait. The ABC’s emergency reporting is serving us well, but disgust takes over at the Australian government’s not particularly subtle dismantling by stealth of this vital community and national asset. In fact, I realise disgust has been a more or less permanent emotion over the course of 2019. I’m not usually one for hyperbole but I think in this case it is warranted, not to be taken literally but illustrative of the proportions of my disgust; multi-directional, multi-dimensional, stretching to every extreme of my existence and beyond. I breathe the particulate matter of disgust into my lungs, into my veins, arteries and capillaries, my heart, my brain. It penetrates the subterranean reaches of our earth; the water tables, the aquifers, even, I suspect, the white-hot, molten-metal core. Disgust drifts to where our earth’s atmosphere bleeds into outer space.
Most of the time, disgust accompanies feelings of grief and dread. As in early 2019, when close to one million fish searched for flow, for faster cooler deeper current, desperately fighting to breathe in the lower Darling River. But they failed, suffocated; their bloated, rotting corpses floating on blue-green algae pools, piling up on the banks and dry riverbeds. The deaths of 100-year-old Murray cod, golden and silver perch, bony bream with shining spirit skins haunt me. I grieve for them as I grieve the looming death of the Murray-Darling rivers system. I fear for the lives of farmers, townspeople, wildlife, reptiles, fish, insects, plant life, wetlands and soil that depend on this river system. Geologically speaking, the Murray–Darling Basin is over 200 million years old. The river system stretches 3,200 kilometres from Queensland, down through NSW, Victoria, the Australian Capital Territory then into the Murray Mouth at Goolwa, in South Australia.
My top lip curls up on the right side, my throat constricts and I feel nauseous. Disgust oozes through my body in response to reports that in 2012 after public consultation had ended on the draft Barwon-Darling water management plan, the National Party, Primary Industry Minister, Katrina Hodgkinson changed the rules to allow irrigators to extract 32 per cent more water during low flows. Disgust that corporate farmer irrigators, many of whom are said to be major National Party donors, have been taking water illegally from the Barwon-Darling and the NSW government has turned a blind eye. Disgust at the massive level of corruption and fraud, lack of transparency and obvious disregard for the health of the Murray-Darling river system that are hallmarks of the government’s water buybacks, water-efficiency projects and capturing of water from overland flow and floodplains. For instance, the federal Minister for Agriculture and Water Resources, David Littleproud, has family links to those charged with Murray-Darling Basin fraud amounting to A$20 million, yet he is still the Minister overseeing complaints in a separate investigation of the $80 million Murray-Darling Basin scandal involving federal MPs Barnaby Joyce and Angus Taylor.
I feel disgust at the corporate farming of water-guzzling crops that are not suited to our dry climate: like the annual planting of cotton, with an average irrigation requirement of 7.8 megalitres per hectare and the planting of permanent crops like almonds that require an average of 13 megalitres of water a year per hectare. About 90 per cent of Australia’s cotton is grown in the Murray-Darling Basin. Cubbie Station, located on the Darling Riverine Plains, is the biggest water user and largest cotton farm in Australia. Its storage dams stretch for more than 28 kilometres. This water is harvested from the floodplains and cannot, therefore, flow naturally to the river. It is believed floodplain harvesting is a major contributor to the huge drop inflow in the Darling River. A significant portion of the water stored in dams is also lost to evaporation. Cubbie has water licences for 460GL or 184,000 Olympic swimming pools.
Instead of addressing how these actions contribute to the reduction of water flow, the Federal Agriculture and Water Resources Minister David Littleproud and his NSW counterpart Niall Blair blame the drought.
*
I let disgust go. I must take my mother something to drink. She is tiny in her bed, covered by red blankets, sleeping. These days, she has almost no appetite. We offer her smaller servings of food, yoghurts, milk drinks; easily digestible with nutritional powder, banana or blueberry or yoghurt mixed in. As the electricity is off, I mash a banana with a fork until it is liquid, whisk it into the milk mixture then strain out any lumps. I may try mashed avocado next time. We are on a journey of discovery, finding out the food tastes and textures that please her. She likes some soups, carrots cooked until they are soft and vegetable risotto. Yesterday, she asked for a cup of tea.
The police knock on the door. My cousin in Perth is worried as she can’t get in touch with us. One policeman tells us that Mogo, Batemans Bay and places like Malua Bay have experienced significant damage from the fire. They say they would prefer my mother and I go to the evacuation centre today.
My father packs a change of clothes and a toothbrush in a bag. I prop Mum crookedly against some pillows on her bed; she manages to drink a small glass of banana milk. I decide to check out the centre and leave her to sleep.
It’s not far to the Moruya Showground. There are a lot of caravans and tents around the oval, horses in various enclosures and other livestock in small buildings. I can hear hens clucking and roosters crowing. People are carrying cats and walking their dogs. The evacuation centre volunteers and emergency workers are set up at tables close to the entrance of the indoor basketball court. A man offers his arm to help me walk. I’m thankful. It’s difficult to negotiate the crowd without my mobility scooter. People, strangers, seem to gain comfort from talking to each other about their experiences, their losses, their fears and their plans for the fires approaching Moruya. I talk to a couple from Canberra who can’t get back because of road closures. Another woman tells me the water is off at South Head. Two elderly men say that the leather shop in Mogo has burnt to the ground. There is a whiteboard with the latest information on the fires, road closures, power cuts and the times when food is served. I register my parents, myself and the cat with the triage team. The workers try their best to help find a suitable place for us to stay but the accommodation on offer is not accessible. They advise me to try the retirement village near the hospital which has chairs available for the night. I drive there and speak to the woman in charge. She is efficient and welcoming. The hushed pinks, greens and grey of the interior provide shelter to many elderly people and some disabled young people, all sitting quietly, staff bustling between them. The woman says we should hurry to be assured of a place as they are also expecting elderly people who are being evacuated from the retirement village in Dalmeny.
Back at home, I give my mother a small glass of apple juice. Dad puts an esky full of drinking yoghurt and apple juice, a pillow and a woollen blanket in my car. I drive to the retirement village with Mum. Two members of staff wheel her inside, I park the car and bring her bag in. She is sitting on a chair, upright, tense, ready to leave. Her eyes are bright blue, buttoned into her pale face, searching for me. I sit next to her, suddenly realising that possibly she thought I had dumped her in a retirement home under the pretext of evacuation and I wasn’t returning. She asks me numerous times why we are here and where my father is. A staff member offers her a sandwich. She refuses to eat with a slight air of indignance. She keeps repeating that she wants to go home. Her confusion and anxiety are increasing rapidly. I tell a member of staff we are leaving, take my mother to the car and we drive.
I’ve lost awareness of dates, days. It’s a weekday, mid-afternoon. No cars on the road, no people walk the streets and everything seems to glow a dirty, apocalyptic orange. We drive past the Queens Street Medical Centre. There is a sign on the door that reads ‘Closed due to fires’. Some businesses that rely heavily on the tourist season have decided to call it quits for good. ATMs don’t work and the few shops that are open require cash. The chemist in the main street and Woolworths are closed. I drive home, hoping it will be possible for Mum to stay one more night in the comfort and familiarity of her own bed.
Dad agrees with this decision. The fire glows red on the ridge north of Moruya. I’m on edge, wondering how I will know if there is an ember attack or if fire approaches during the night. I manage to sleep soundly, waking to the alarm at 6am. Dad helps Mum into the car. We find parking in front of the evacuation centre. It is not too far to walk. I keep talking to her, explaining that we will be staying here for the whole day and night. An emergency worker asks if we would like someone to bring us our meals. I appreciate her assistance. It means we don’t have to join the long queues at the building that serves as a kitchen. A charity volunteer talks to me about finding a mattress for my mother. Soon, a young man appears with an air mattress. He proceeds to blow air into it. Another volunteer brings sheets and pillows that have been donated. People are helpful. They assist me to walk and carry things. When the electricity goes off, a woman in a bed nearby tells me she is a nurse. She offers to take over from me for a while to fan my mother. Her husband has Parkinson’s and is waiting for his daily medication to take effect. Their two teenage sons are with them. Like many people in here, this family knows the fire has already been through their area but don’t know if their house is still standing. I keep Mum’s fluids up and give her mouthfuls of yoghurt from the esky. When a volunteer brings spam and salad sandwiches, surprisingly she eats most of it. The small dogs are yapping, the parrots squawking but generally, the animals in the hall are well behaved.
Time passes slowly. I keep talking to Mum, reassuring her. Someone says the fire is at North Moruya, firefighters are water bombing near the airport. A volunteer offers me two wet cloths. I put one at the back of Mum’s neck and one in the esky. She asks about Dad a few times, then asks if we can go home soon. I tell her we are staying the night. I don’t know how I am going to help her up from the mattress when she wants to go to the toilet. I speak to the emergency workers about it. The hair around my forehead is wet with sweat. People stop and talk to us. I notice various disabled people of different ages with varied impairments and health conditions. They are accompanied by family and friends. The strength of community in this hall is palpable. People seem to know intuitively how to help each other, their skills are apparent. It is clear that, even without resources, we will make the best of the distressing situation we find ourselves in.
Mum wants to go to the toilet. She tries to get up but cannot. I ask an emergency worker for assistance. She calls another woman. They try to help but hurt Mum by pulling on her arms. She doesn’t complain. An elderly woman sitting across the way gets up and walks over. Her name is Val, she was a geriatric nurse in England. She demonstrates to the women how to help a frail person up from the floor. Mum is on her feet. I guide her to sit on the walker and push her. We move slowly. I’m not physically strong. The walker helps me balance. There are four toilets and a row of metal basins on the wall. One toilet has a piece of paper taped to the door with ‘For people with upset stomachs’ written across it. Apparently, some form of gastritis is raging through the dogs and the humans in the centre. When Mum is finished, I rub her hands with sanitiser and we return to our mattress. Even though this experience is hard for her, she is quietly persevering. She lives in the immediate present or in her childhood. She talks to me now about her father, telling me that he was a gentle man.
*
I lay next to her and I think about resilience and about how we are made vulnerable by a system that has let us down. How communities that lack resources – poor communities, the disabled, the elderly, First Peoples’ communities – are particularly impacted by disasters like this one. My guts twist in anger and hurt for those in need who are disregarded or, worse, stigmatised and punished by government policies. Disgust sets in again at the repeal of Medevac, stripping away the only pathway to evacuation from offshore detention for sick refugees. Disgust at the decision to axe funding to the main body representing First Peoples women survivors of domestic abuse. Disgust at Robo-debt’s cruel assault on our welfare system causing extreme distress and, in some cases, suicide. Disgust at the refusal of government to increase the New Start support allowance which, at around $40 a day, condemns people to live well below the poverty line, barely covering rent, let alone other essentials.
Disgust that people on the cashless welfare card will not be able to buy goods during this disaster when the shops are demanding payment in cash. Disgust that the expansion of the cashless welfare card is costing between $4,000 to $10,000 per person to implement and manage. This money could be going directly to income support or work programs, education or additional resources and infrastructure in areas impacted by high unemployment. It goes instead to Indue Pty Ltd, a corporation said to donate to various Liberal and National Party branches nationally. In August 2019, Indue is reported to have received up to $21.9 million. If the card is extended to every person receiving benefits, the cost to the taxpayer for administration alone will be in the billions. Disgust also that the Indue card is the result of the sustained efforts of billionaire mining magnate, Andrew Forrest, who dictates that the solution to what he perceives as the ‘welfare dependency’ of First Peoples is income management.
*
Women bring us our evening meal; a sausage with mashed potato and fried onions. One woman asks if she can bring some water with electrolytes.
I say, ‘Yes, please.’
‘It’s cold and it’s electric-blue,’ she adds.
When she returns, Mum has a long drink from the flask. Then tries to get up. An emergency worker brings two young army reservists who offer their help. Val explains to them how to lift. They do a great job. I ask them how they feel about helping citizens at home. ‘It makes me feel valued,’ one says.
I help Mum to the washbasin and pour water from a bottle so she can clean her teeth. We return to our place on the floor and lay down with every intention of sleeping. It is noisy and hot.
Mum turns to face me. Her eyes seem to look right into who I am as if she has some kind of superpower.
She asks, ‘How are you? How are you really going in your life?’
I say, ‘I am good Mum. I have friends. I’m good.’
She continues to look at me.
I have not asked myself this question. Every day is a struggle. I am self-employed, work non-stop and make very little money. My work-life balance is terrible.
Children run up and down the hall, laughing and screaming. The main light in the hall is just above us, secured to the backboard of a basketball hoop.
*
I return my thoughts to Andrew Forrest and the big mining companies in Australia. Miners of fossil fuels like Adani only expect to be viable if they depend on subsidies, favourable deals and tax concessions. Over its thirty-year life, Adani’s Carmichael coal project would be given at least $4.4 billion in taxpayer subsidies. The miners bring in huge revenues but pay little or no tax at all. The latest Australian taxation figures record that massive oil and gas producers, like Exxon Mobil with $9.23 billion in Australian revenues, Chevron with $5.27 billion and Woodside with $6.28 billion, all paid no tax. Gina Rinehart’s company, Hope Downs, with $3.8 billion in revenue, does not pay tax. That both our two major political parties support coal exports when we could be developing other export industries including renewables, makes no sense. I want to see a breakdown of who exactly benefits from the US$87.7 billion income from our 2018 exports of mineral fuels. Given that the demand to decommission coal mines includes a just transition of jobs to renewables, I wonder why there is so much emphasis on jobs in the coal industry when just over 37,000 jobs are involved and many mines, including Adani, are automating. There is also little discussion on how the increase in our exchange rate caused by the resources boom negatively affects other job sectors — industries such as tourism, tertiary education, manufacturing, agriculture that employ vastly more people in widely dispersed locations. I feel disgust that we are lied to by politicians like Scott Morrison and the billionaire-owned media. We are not given the information we need to make decisions, we are discouraged from thinking critically.
I feel disgust that Gina Rinehart’s company, Hancock Prospecting, donates millions to the right-wing, climate-denying think tank, Institute of Public Affairs (IPA) which has close links to the Liberal party and to Murdoch’s media. Murdoch News Australia pays no tax, despite $2.4 billion in revenues from its papers and websites. The same media spreads clearly disproven disinformation that arsonists, not climate change, are responsible for the continuing fire disaster we are experiencing in Australia.
I am equally disgusted when, in September 2019, Donald Trump hosts a state dinner in honour of Scott Morrison accompanied by guests Gina Rinehart and Andrew Forrest, billionaire media magnates, Seven West Media chairman Kerry Stokes, News Corp’s Lachlan Murdoch and billionaire Anthony Pratt. These are the important players in Australia’s oligarchy. This is where power resides.
I assume oligarchs can helicopter out of a danger zone if they ever find themselves in one. They can afford to ‘adapt’ to climate change by building bunkers into their holiday homes. We never expect to share space with an oligarch in an evacuation centre.
*
The generator stops. The lights go out. An emergency worker fiddles with an electricity cable.
My mother asks, ‘Can we go home in the morning?’
‘I think so,’ I say and turn over to sleep.
The generator starts up again. I wake to the light flickering in my face. Most people in the hall appear to be asleep. Mum is trying to get out of bed. She thinks she is at home. I explain that we are in the hall, that we have evacuated. She asks where my father is. A volunteer comes to help her up. I can now see bruises on Mum’s arms, her hips and knees are sore. Val comes over and instructs the woman how to lift. Val also lifts. I wheel Mum to the toilet. It is too late. She has wet herself. I wheel her back to the bed and pack our bag. We pass by the tables near the entrance and sign out. I explain that I can’t continue to put Mum through this. A young man helps us to the car. I don’t know if we are still under threat from fire. We drive home.
Both Mum and Dad sleep through the next day. I listen to the ABC. A neighbour knocks. He tells me we must boil our drinking water because it is now being mixed with water that comes directly from the river. He says the supermarkets are empty. There is no food, no fuel. I take two cans of Irish stew from the cupboard. That will do us.
As the days roll by, we are lucky; the electricity is back on and so is the phone and Internet. Many communities are still waiting for the electricity to be restored. A truckload of supplies gets through under police escort. The food is gone from the supermarket by lunchtime.
*
My father has an appointment with an Aged Care Assessor who will assess him for Home Care Packages (HCP) level 2. She tells us that her house, north of Moruya, is under threat from the renewed fire danger forecast for the weekend. She will move into town with her in-laws. As we talk, the lack of transparency and brokenness of the aged care system become obvious. Unlike the NDIS, where disabled people at least have the option of self-management, the elderly must use providers. Some providers are said to charge elderly people up to 50% of their government subsidy for administration. Comparing provider charges is an almost impossible task as the formats are not standardised. I ask the assessor if she can explain the announcement made over Christmas by the federal government that private companies will deliver assessments from April 2021. She doesn’t know about it. More than 400,000 assessments are done every year for home-care packages and residential care, at a cost of $800 per assessment.
Disgust settles in the room once again as I realise this is another opportunity for private enterprise to pocket public funds. The assessor explains how, to date, state-employed nurses, social workers and geriatricians work through community health and public hospitals to assess the level of care required by individual elderly people. She doesn’t think private providers will have the community knowledge, expertise or concern for the individual to provide this service. She is worried that, without the involvement of state and local government structures, there will be even less transparency and little accountability. She gets up to go, saying to Dad that it will take up to two years for his package to come through once it is approved.
He says, ‘Well, I may not be here by then.’ He adds, ‘But I don’t want to shoot the messenger.’
I follow her out the door, holding onto the wall for support.
*
The road to Batemans Bay has just opened. I want quotes for an adjustable bed for my parents, so Mum can sit up in bed to eat. I drive through smouldering, blackened forests. Twisted sheets of roofing iron mark the spot where houses, sheds and businesses have burned to the ground. Smells of burnt wood intermingle with the acridity of charcoaled animal flesh. The agony of a young kangaroo, its body seared to a fence, is captured by a photographer, singeing the psyche of the world. One billion animals estimated killed in the fires. Unknown numbers of invertebrates, insects, frogs, bats dead. Possible catastrophic consequences to ecosystems. More than 2,000 homes and eight million hectares burned. Vast areas of bushland will not regenerate. At least twenty-four people were killed and the fires continue.
People in Sydney have been breathing toxic, smoke-filled air for months. People on the south coast are breathing smoke. On 1 January 2020, Canberra’s air quality is the worst of any major city in the world. On 8 January, the Bureau of Meteorology announces that 2019 was Australia’s hottest and driest year on record. Yet our government acts as if it is business as usual, touting that we’ve had fires since time began.
The 2008 Garnaut Climate Change Review examined the scientific evidence around the impacts on Australia of climate change and predicted that, without adequate action, the nation would face a longer and more intense fire season by 2020. Disgust almost overpowers me that this and other warnings are ignored. That Scott Morrison chooses not to meet with the twenty-three former fire and emergency leaders who ask to discuss early preparation and the equipment needed to fight the impending fire disaster. Disgust that, under the 2019-20 NSW state budget, fire and rescue capital expenditure is cut by $28.5 million or 35 per cent. The Rural Fire Service capital expenditure budget is cut by $49.9 million or 75 per cent. Disgust that the Prime Minister sees fit to go on holiday to Hawaii, the NSW Minister for Emergency Services goes on holiday to Europe, and the Federal Defence Minister goes on holiday to Bali while this land is suffering a profound disaster of apocalyptic proportions. Disgust runs out my ears, oozes from every pore and orifice at the arrogance with which the Prime Minister responds to public concerns on how to compensate and properly equip volunteer fire crews who have been battling the fires since September. Disgust at the forced handshakes and thuggish behaviour he imposes upon the traumatised community of Cobargo. I cannot possibly talk about everything that disgusts me. There is too much. This is why I choose to represent my disgust through hyperbole.
*
The bleak, ashen husks of trees that now comprise Eurobodalla Botanical Gardens are a blur as I drive back to Moruya. It dawns on me that, just like hyperbole, disgust has a purpose. Feelings of disgust are an evolutionary response to protect us from pathogens, infectious threats. Disgust helps us protect and preserve the social order from something that is offensive, poisonous or dangerous. Disgust is about survival.
My disgust calls for totally different ways of living and producing, and different ways of relating to each other and the earth. I don’t think anybody knows yet what this will look like, but I’m sure the oligarchs must not have any say in shaping it. Carbon-fuelled accumulation of capital, greed and ever-increasing profit margins are dangerous to life on earth. Our survival will involve us developing confidence in our ability to respect life, to love and help each other, confidence in our skills and our knowledge, so that we may work within our communities, upwards and outwards, joining with other communities for the common good. Our survival will depend on us learning how to recognise and actively fight corruption, fraud and lies. It will mean we find ways to make reliable information available to all, support and build progressive, independent media, develop critical thinking and make decisions based on facts, not lies.
I read that on 31 December in Victoria, Veronica Marie Nelson Walker, a 37-year-old Yorta Yorta woman is charged with shoplifting and refused bail after representing herself at Melbourne Magistrates’ Court, instead she is remanded at the Dame Phyllis Frost maximum-security women’s prison. On 2 January she is found dead in her cell. Our survival depends on urgently building solidarity with those who are discriminated against, racialised, criminalised and murdered by the laws and system that are supposed to protect us. We know the violence against First Peoples, disabled people, women, refugees, the elderly and other oppressed groups of people is linked. The brutality of this system is lethal.
*
I stand by Mum’s bed, looking at her curled warm in her blankets.
She asks, ‘Do we have to evacuate again?’
‘No,’ I say, lying next to her. She talks about her father being on the susso. She describes how, during the war, at school, they did drills, practised climbing down into trenches in the Exhibition Gardens.
‘I don’t think the world has ever been in as much danger as it is in now,’ she says, placing her hand on my hand.
Christelle Dreyer is a freelance graphic designer and dancer who lives in Brackenfell, Cape Town. She took up competitive ballroom and Latin dancing in 2004, then moved onto contemporary dance in 2010, performing in Dance Joint produced by Jazzart Dance Theatre and choreographed by Jackie Manyaapelo, Infecting the City, choreographed by Tebogo Munyai, and Unmute Project, choreographed by Andile Vellum. She has worked on projects with various dance companies, including Jazzart Dance Theatre, Remix and Unmute. She recently performed in No Fun ction alL anguage, at South Africa’s National Arts Festival 2016 in Grahamstown.
Gaele Sobott: How did your passion for ballroom and Latin dancing initially develop?
Christelle Dreyer: As a child I loved listening to all kinds of music and watching people dance. I can`t really recall exact dates, but Jazzart Dance Theatre came to my school and I was lucky enough to be chosen as one of the kids to be part of a performance. It opened me up to realising that I actually could move and not just be on the side admiring people as they danced. After that I started Ballroom and Latin dancing.
GS: What then led you to contemporary dance?
CD: I started taking open dance classes as a way to keep fit and do something different. I enjoyed it so much I never stopped.
GS: How did you become involved in No Fun ction al Language?
CD: I received a phone call from Danieyella Rodin who works at The Chaeli Campaign, the organisation that produced No Fun ction al Language. She asked me if I’d like to audition for the show and then emailed me all the relevant information. I contacted Jayne Batzofin, the director, who was conducting the auditioning process over a two week period. So I auditioned and got a part in the show.
GS: Who are the other performers in the show?
CD: Andile Vellem Daniel Mpilo Richards, and Iman Isaacs are the other dancers. Dave Knowles is the musician.
GS: Tell me about your experience of working on the show.
CD: No Fun ction alL anguage has been an exceptional experience and an amazing opportunity. From the start of the creation process to the final production and the moments in between it’s been an incredible process of growth and discovery.
Jayne Batzofin and the cast, everyone involved, have been so open-hearted and open-minded. Some of them, before meeting me, hadn’t had any interaction with a disabled person but the way they approached the idea of disability is no less than amazing. I would like to think that we have become a little No Fun ction alL anguage family. I feel blessed to be part of the team. Together we created a work that has stimulated discussion around what happens if we don’t have the right words or any words to share our thoughts, discussion about our desperate search for meaning and about inclusivity for all members of our society. Each chapter of No Fun ction alL anguage encouraged different thought processes and emotional dialog within me. It was great being in a position to explore these things through performance. The response from audiences has been more than overwhelming.
GS: How did you contribute to the choreography of the piece?
CD: When Jayne choreographs she uses a theme then allows us to improvise our body movements in relation to the theme. So we generated new movements and material. These were then incorporated into duets or into the larger choreography. In chapter five of No Fun ction alL anguage, for example, that entire solo was created by me, and Jayne refined and detailed some moments.
GS: Please describe what Chapter Five is about.
CD: Chapter Five was about deception. How you experience deception, what it means to us. I looked at the emotions we feel when we are deceived and when we deceive and worked on translating that into movement. So Daniel explored the act of deceiving someone. His character was saying, “I love you” but not meaning it. Andile and Iman looked at how you can deceive yourself, and I worked on how sometimes you want to believe the deception. You know you are being deceived but you want to go ahead, for example, you believe that person loves you. So the choreography I developed was communicating that process of trying to hold on to what you know is not true but what somehow is pleasurable. Well it would be pleasurable if it was true. You try to hold onto that pleasurable non-reality for as long as you can. So my choreography was very quiet.
GS: How did you translate quiet into movement?
CD: Slow and controlled, under the radar.
GS: I think it was Silence, the chapter where you were on your back and moved your leg up very, very slowly. That was a powerful moment.
CD: Yes that took extreme concentration, and the right breathing.
GS: Do you have control over your safety during the creative process?
CD: Complete control. If my body doesn’t want to do something, I don’t. But I try new moves. If that doesn’t suit me, I say so. I know what my body is capable of. Anyone who works with a disabled dancer knows that there are certain traditional ways of dancing that may be impossible. It’s a fine line between a director knowing when to push and when not to push you. At the same time you don’t want a director to be patronising and not get you to push boundaries.
GS: How do the themes of language and communication addressed in No Fun ction al Language relate to you personally?
CD: For me communication takes on many different forms. I think of dance as my most honest and purest form of expression and communication. In those moments of dance, the movement and the spaces between movement, I find what I really want to say to the world. I also communicate as a graphic designer. My work tends to be minimalist, which I feel expresses my easy-going personality.
I think the way I communicate with others is largely determined by the circumstances I’m presented with. For example, the way I communicate with Andile Vellem, who is Deaf, is different to how I communicate with the rest of the cast. My sign language is very bad, but somehow it’s often easier to convey information to him than to someone who can hear, other times we have big gaps in communication. I really need to work on my SASL (South African Sign Language). As far as spoken language goes I am fluent in English and Afrikaans. Not really sure about fluent as my vocabulary is not that large, in my mind at least. I find it difficult to learn new languages. But also I realise the value of discovering new forms of communication and maybe just maybe, I will be putting pen to paper more often.
GS: Afrikaans and English. How do these languages figure in your life? Do you consider either of these languages as your first language or mother tongue?
CD: Both languages are equally as strong as each other in my life. My parents raised me speaking English and I went to an English-speaking school but my family, my parents, aunts and uncles, also speak Afrikaans, and my community.
GS: Afrikaans has historical significance in the context of the ant-Apartheid struggles and the 1976 student uprisings against the Afrikaans Medium Decree. Do you think the language still represents an oppressive force for some people? Tell me more about what the language means to you.
CD: I was a bit too young to fully understand what it was like during Apartheid. I don’t really have the experience. My parents are the ones who know about what happened then. But from what I observe now Afrikaans is becoming a more general language in Cape Town. There are a lot of Coloured people who speak Afrikaans but it’s a bit different to the way White people speak the language, not pure like in the text books. Coloured people have their own slang, and it’s more musical. Also the humour in the way Coloureds speak the language is different. I enjoy that humour.
GS: What are the elements of your identity that have remained steadfast over the years, what has changed?
CD: Well my identity is not something I really think about in great depth. Apart from the more obvious things like the fact that I am a Coloured disabled artist. I think I have always been open to experiencing different things. Perseverance and persistence is something I’ve always had and I have a feeling that will not change anytime soon.
I never understood myself as unique. That was partly to do with me being a twin. I am a twin but actually my sister and I are completely different. My immersion in creative processes demanded that I explore my sense of self. So that definitely helped me realise and embrace my uniqueness.
GS: I was recently at an event where the writer and journalist, Sylvia Vollenhoven was talking about her book, The Keeper of the Kumm. She said, you can be Zulu or Xhosa and it defines to some extent your history but Coloured is a more general term. She feels that people who identify as Coloured are largely excluded from the narratives of nationhood that South Africa is now constructing. What does this part of your identity mean to you?
CD: There are lots of divisions and classes in the Coloured community. The way you live as a Coloured person, where you live, the way you identify, the way you’re brought up. Generally yes, a Black person has a very strong sense of identity. The backstory of being Black or the backstory of being White is usually solid where they know their granny’s granny’s granny. Many Coloured people haven’t answered the questions, Who am I? What is my history? Where do I belong? Like what exactly is a Coloured person? Yeah, it’s complex. I don’t think Coloureds really know how to define themselves. They don’t have resources to draw on. Like me, I don’t know the history of my grandparents or beyond them.
GS: Why do you think that is? The reasons why you don’t know?
CD: Maybe because the past has been painful and people haven’t wanted to talk about it. But I’m lucky at least I knew all my grandparents. I only have my grandfather left. He has dementia now so I can’t really ask him about our family history. My father’s parents died many years ago. My mother’s mother, Ma Yvonne Lopes, played a big role in encouraging me to be confident and proud of who I am. She was an amazing grandmother. My mother too, she instilled certain values in me and I don’t give her enough credit for all my successes. I am content with who I am and where I am in my life. My friends and family keep me grounded.
GS: Elaborate a little on your identity as a disabled artist?
CD: I was diagnosed with OI (Osteogenesis Imperfecta) when I was a baby. My sister also has OI, I mention this because I always get asked since we’re twins. Because of my OI I spent many of my childhood years with broken bones or in hospital. My mother has lost count of the number of operations I’ve had, at least twenty. The amount of times I’ve broken my bones seems endless. My tolerance to pain has become so high that most of the time I don’t realise I have a broken bone and in some cases more than one. I was born and grew up in Cape Town with my parents. I’ve always been surrounded by family and friends so apart from OI issues I’ve had a very normal childhood. OI is one of the many layers that shapes who I am. I Matriculated in 2004 and started studying Graphic Design at Cape Peninsula University of Technology in 2006. I graduated with a Baccalaureus Technologie in 2011. During my years as a university student I never stopped working on my dance goals and dreams.
GS: Can you describe any barriers you have encountered as an artist with OI?
CD: The strangest thing to me is that artists are generally more open to individuality and people expressing their uniqueness. But somehow when people see disabled artists they have this preset idea that disabled people cannot produce the same high quality as them. I am not saying it is all arts practitioners and audiences but that bias is there. Yet in many cases the standard of work produced is of equal quality or even better.
I have experiences where I would go for graphic designer interview and I’d be told they could not hire me because I was not what they expected but I have a very good CV and portfolio. I don’t put the fact that I am disabled in my CV as that should not be the measure as to whether I get the job or not. Of course they know they can`t say to my face it is because I am disabled that they will not hire me, so they come up with polite and creative ways to tell me. It really is not fair.
It’s very satisfying when I get to prove people wrong and exceed their expectations of me as an artist. Like after performances of No Fun ction al Language when audiences are left not only in awe but with different perspectives of disability.
GS: How did you find disability access at Grahamstown National Arts Festival 2016? What changes would you like to see?
CD: I feel that disability access was not taken into consideration at the Festival. This is really disappointing as there where disabled artists on the festival program. There is so much said in South Africa about human rights and treating people as equals, yet the basic needs of people using wheelchairs, deaf people, blind people are not being considered. I’m blessed to be able to walk for short periods of time, but what about disabled people who can`t walk at all and need their wheelchairs to get around? Access is not just needed for artists but also people attending the festival, audience members. It’s a national festival, disabled artists and audiences should be welcomed, not excluded.
I think disabled people are standing up for themselves more than in the past and that they are being integrated as part of their communities so much better. There is still however a long way to go.
GENEVIEVE BARR AND ARTHUR HUGHES AS ALICE AND PHIL IN THE SOLID LIFE OF SUGAR WATER BY JACK THORNE CREDIT: PATRICK BALDWIN
Amit Sharma has been the Associate Director of Graeae Theatre Company, London, since 2011. He recently directed The Solid Life of Sugar Water, a Graeae Theatre Company and Theatre Royal Plymouth production, gaining unanimous acclaim at the 2015 Edinburgh Festival Fringe, leading to a 2016 UK tour including a run at the National Theatre.
Amit is a graduate from Graeae’s Missing Piece actor training course. In 2012, he co-directed the outdoor spectacle Prometheus Awakes (with La Fura dels Baus/co-commissioned by GDIF and SIRF), marking the first large-scale outdoor production to be artistically led by Deaf and disabled people in the UK. Also for Graeae, he directed Ted Hughes’ The Iron Man, which toured both nationally and internationally and co-directed Graeae’s Rhinestone Rollers in Sequins and Snowballs with Jenny Sealey at the Southbank Centre. As Assistant Director, he has worked on Graeae’s productions of The Threepenny Opera, The Changeling and on The Four Fridas for Greenwich and Docklands International Festival 2015. Amit currently leads on Write to Play, Graeae’s flagship new-writing programme in partnership with venues across the UK.
GaeleSobott: Can we start by talking about the set design in The Solid Life of Sugar Water. The bed is central, upstage, vertical with the actors standing against it. From the audience perspective it is as if they are looking down on the characters lying on the bed.
Amit Sharma: The thing about Sugar Water and the aspect that I was really interested in was the relationship between the two characters, Alice and Phil, how much they were or weren’t communicating. The style, as it was written by Jack Thorne, consists of two monologues essentially inter-dispersed with both the characters’ dialogue. Well it is much more intricate and clever than how I’ve just described it to you, but the nature of them not talking to each other and addressing the audience set up something which is immediately striking, irrespective of the subject matter. There is some form of subtext that is going on between the two characters, which is very exciting. When we did our original set design it was very abstract, very sparse actually. Then we did a reading of it and the designer said to me, ‘I think we’ve got this wrong. I think the audience needs to be placed in the bedroom. The bed is missing.’
She was absolutely right. The bed was like the third element of the relationship within the text. So then we needed to decide how to be artistic about it. We didn’t want the bed to be literal. The piece isn’t naturalistic. We jump from the past to the present and then back again. So we developed the idea of looking down into the couple’s bedroom.
GS: What is that perspective? What does it give to the play?
AS: I really wanted the audience to feel that they couldn’t get away from being privy to and a part of the couple’s life. I don’t know about you, but when I visit a friend’s house the bedroom is always the last place I look. It would be a bit weird to go and look in their bedroom. That’s because it’s private and you’d feel as if you were prying into someone’s very personal space, even if they’re not in the room. I wanted the audience to feel like they were able to be in that space.
GS: How does this position the audience? Are they voyeurs or perhaps fly on the wall?
AS: I think more fly on the wall. I think voyeurism has an element of choice about it. Maybe fly on the wall does too. I just wanted the audience to really feel the pressure cooker of the couple’s relationship and be a part of that. Not able to separate themselves from it. That’s what the play does. You fall into it and by the end you’re feeling all kinds of emotions because of the performances but also because of Jack’s writing. The writing and the set. That’s why I wanted the audience to be together in the bedroom with the couple. I wanted them to be with them in their private moments without feeling they were intruding. At the end I wanted the audience to feel they have been through so much with this couple. It’s actually about healing both for the couple and also for the audience.
GS: The audience are looking down on the bed but they are also being spoken to directly by the characters. It is not possible for the audience to position themselves as just observers. They have to participate. What are your thoughts on this?
AS: That’s the good thing about theatre. You can set up a convention and then just totally break it. So whenever the characters were on the floor, that was like the wall of their bedroom but it became less about the bedroom, it was the post office, the bridge, even though the bed was always present. As a creative team we wanted it to be subtle, so yes the bed was always in the background because there was always that big question of them trying to have sex.
GS: There are many disabled artists and directors who feel there is a need to explore sex and disability, for various reasons including societal attitudes, the infantilisation of disabled people. What is the importance of sex in disabled art? What is the relation of this play to the exploration of sex and disability?
AS: The most interesting thing coming out of Sugar Water is that question has not been asked. It has not been unpacked. What the play does is almost normalise that very question of sex and disability. It is such a huge topic for so many different reasons. Perhaps it is because of the performers, one performer is Deaf and one performer has a physical impairment, but not to the extent where it impacts on their sex lives. What I mean by that is that if, say, one of the characters was a wheelchair user who had 24 hour personal care then that dynamic shifts. I was reading an article today about the Independent Living Fund and this guy saying how it can be difficult to live independently for example to go out and chat up girls because you’ve got someone else there all the time. So you have to negotiate that relationship. This play doesn’t go there. People have picked up on the element of communication between the couple, but the sex element not so. I also think it is because of how Jack as a writer was playing with the idea of sex. There’s a lot of comedy with some really graphic descriptions.
GS: Well yes there is comedy and there are very serious moments, a fine line.
AS: Yes, Jack Thorne gets that fine line absolutely right. In rehearsals we spoke about how graphic we should get or if we should get graphic at all. If we were brave enough to show our naked bodies and those kinds of discussions. It quickly became apparent that it wasn’t about that. It would have become alienating, as opposed to the audiences going: ‘Come on, we’re theatre audiences. We’re pretty smart. We can go whichever way you want us to go. We don’t have to see nudity to get what you’re talking about.’
It felt like we could just tell the story. The most interesting thing is the intricacy of communication between the audience and the performers. The couple think they are talking to each other and they’re not really, and they do the direct address where there is a conceit between each character and the audience. There are many different levels of communication.
GS: Can you talk a little about the quality of the reviews the play has received?
AS: Well I think the journey of journalism and the way this show, and other shows at the Edinburgh Fringe by Deaf and disabled artists, have been reviewed has really shifted. It’s really come a long way. The art is now being reviewed as opposed to the performers and their physical shapes and sizes and what have you. It is really refreshing to see the work being reviewed in this way.
Talking about Sugar Water the reviews spoke about the subject matter as happening to two human beings not to two disabled people. In relation to Genevieve, being a Deaf performer, the discourse was quite intelligent as opposed to talking about a Deaf person blah blah blah, it was more sophisticated in both the reviewing and the conversation around it. That hasn’t always been the case.
GS: What comments did reviewers make in relation to Genevieve being a Deaf performer and character?
AS: The discussions were linked to the idea of communication. Naturally if your partner doesn’t sign then you have to rely on lip reading and you may not catch all the communication. Phil can’t sign so he is not able to get what he feels across all the time. The scene when he’s on the bridge and he tries to sign and gets it completely wrong really resonated and got the biggest laugh every time. By that point the audience realises Alice and Phil are not communicating on a number of levels. It was about them as individuals and what they felt for each other, what they wanted and needed from each other. Phil had never had a huge number of relationships before hand. Alice had just come out of a very difficult relationship. So that makes two very vulnerable people in a position where they are wondering if the relationship can work, can they get along. Can they get married and try to have a baby. Is their relationship driven by their love and passion for each other or by their insecurities? Sometimes the best art doesn’t answer the questions it poses. It poses the questions for the audience to consider.
GS: Do you think Alice and Phil’s relationship is resolved in the end?
AS: I don’t want to say. Some people are unsure whether they continue or they don’t and I intended for that to happen. In my head they do, yeah. But I didn’t want to answer that. I spoke to Jack about it. He really wanted a happy ending and I really didn’t want a happy ending. I said, “Ok if we’re going to have a happy ending we have to hint and suggest the possibility.”
GS: I do think the play ends with them understanding and respecting each other.
AS: It’s only at the end that they actually say, ‘I love you’ to each other. Having been through the trauma of losing a baby. Jack’s a smart dude!
GS: There seems to be some relationship and similarities between The Solid Life of Sugar Water and Lungs, which also played at 2015 Edinburgh Fringe. Can you explain this?
AS: We had read the script about three or four years ago. When we got the script we were really interested. Duncan Macmillan is a great writer. We were thinking of doing a double bill but then Paines Plough went ahead with the commission so we didn’t.
GS: I found the story quite similar.
AS: Yes that’s why we had the idea that the two plays could work together.
GS: Where are you taking the play next?
AS: We’re putting a tour together. We’re going to be at the National Theatre for three weeks, which is superb. It’s the first time Graeae has been there and we’re incredibly proud. We hope the momentum builds from there.
It’s one of those plays. I remember reading it for the first time, here as a company, and the kind of silence at the end of the reading, everyone taking deep breaths. We knew it was a huge impact type of play. Audience reactions to the play have been emotional and deep. One woman stopped watching half way through. She sat there with her head down and just wouldn’t watch. There was obviously something that really connected with her. She started watching again a bit later. She was with a group of her friends and I saw her at the end. She was just in complete floods of tears. I don’t really feel bad about too many things but I did then.
GS: Why did you feel bad?
AS: I felt for her because I didn’t know her story and didn’t know what it was that she was relating to. I went over and asked her and her friends if they were alright and did as much as I could, offered her a gin and tonic. Theatre is such a powerful thing. I think people sometimes forget the impact theatre can have.
GS: Why do you think theatre powerful as opposed to other mediums of storytelling?
AS: It’s so immediate. You’re there. You can connect, relate to the work. You are immersed in the play for the length of the piece. People love stories.
GS: You can watch a series on TV and experience stories. What is it specifically about theatre?
AS: The craft of theatre is important, the putting together of the story although you can also do that with film and TV. There is something unique about theatre in showing that passage of time. I think the immediacy of you as a member of the audience and your relationship with the performers is so unique to you in an environment where there are other people as well. That is very special. You can watch television or a film in a cinema however the screen allows you to be one step removed from it. You can’t really do that with theatre. It is more interactive. It’s more immediate.
The question in theatre is – Why now? What’s important about telling the story now? With TV and film you can go back to it again and those performances won’t change but with theatre they will. You can go one night and the next night there will be subtle differences, something may have shifted – become more superficial, something may have become deeper. There’s an unknown quality. There’s that thing also where if something ‘goes wrong’ the performers just have to pick up the baton and carry on and audiences love those moments when it doesn’t all go to plan. Film and TV are created where it all goes to plan so with theatre there’s a different type of freedom and an improvisational quality.
It’s about creating the story. The performers grab the audience very quickly, in a vital and stark way, asking them to empathise with them.
GS: Did the actors contribute to Jack Thorne’s script during rehearsal. Were changes made for any reason?
AS: Well the actors didn’t really suggest changes but we did shift the script around them. We didn’t have any idea who we wanted to work with so in the beginning in Jack’s script the character, Alice, wasn’t Deaf. When we cast Genevieve as the actor for that part, Jenny Sealey, the Artistic Director of Graeae, and I had a conversation and we gave notes to Jack saying there are elements relating to Genevieve that should have some representation in the script. But in contrast, the Post Office scene about Phil not being very strong wasn’t adapted for him because of Arthur’s arm or anything. That was the original script.
GS: I didn’t take that scene as being about his arm.
AS: Well some people do you see. They think that was where his impairment was being referenced because he had this big box that he couldn’t quite carry. That was always there. But Phil signing on the bridge wasn’t there before we cast the actors. Jack did a couple of rewrites based on Jenny’s and my notes.
The stuff that happens behind the scenes may change according to the actor you cast. At the beginning we had created a soundscape and every now and then there’d be a heartbeat noise as a cue for the actors to shift position. There was also a sound cue for the actors to know the audience was seated and we’d got clearance from front of house. It was a dog bark. Genevieve has hearing aids so she could feel the vibrations of the heartbeats, the shift and the change, because there was a speaker close to her. What became slightly tricky was her trying to listen to the dog barking because of the frequency and because there were so many people in the room all making noise. So we discussed a better way of cueing and her feeling comfortable within the cueing system.
Also because there is so much direct address, I said, ‘You have permission to look at Arthur whenever you want. We’re not asking you to play hearing.’ But Genevieve got around that by learning Arthur’s script as well and picked up on his rhythms, picked up on how he delivered the text. That was her process. She wanted the same access and freedom as him and decided on her own cues. That didn’t mean Arthur had to do it exactly the same way each time. So there was that kind of negotiation going on during rehearsal.
GS: How do you cast at Graeae? How did you cast the actors for this play?
AS: For this play I got a casting director in. We work with some amazing performers and some amazing actors. I just felt this time round it would be really healthy for the Company to audition new people and add to our expanding pool of performers.
GS: Do you specifically cast disabled actors?
AS: For this play I decided the casting breakdown. Irrespective of impairment this is what I’m looking for. Just by the nature of the play we needed people who would be good at delivering text. I don’t mean in the classical sense, I mean it’s such a wordy play. There is a demand that Jack’s writing presents itself. That doesn’t mean being quick or slow or whatever. That’s what Graeae does – we say this is the play and this is what we are looking for. Let’s see who we can get through the door.
GS: I believe Graeae practises some form of affirmative action in casting performers and actors who identify as Deaf and disabled. How does this work?
AS: Yeah in our plays we’ve got at least fifty percent actors who identify as Deaf or disabled. For the two-hander I thought we had to have two performers who identify. We couldn’t have one. It just didn’t feel right. It was such a small company. But when we did the Threepenny Opera there were something like twenty performers so ten were disabled and ten were non-disabled. As it transpired, we got to the end of rehearsals and three of the people who previously didn’t identify said, Oh yeah, I’m deaf in this ear or I’ve got this impairment. So the Deaf and disabled were staring to outnumber the non-disabled. It was interesting. One of the reasons is that if people declare their impairment jobs shut down.
GS: But not here at Graeae?
AS: Yeah exactly, absolutely not at Graeae. For Sugar Water we were conscious we wanted new blood and we found it. The other thing is that we will use some of the people who auditioned but didn’t get involved in Sugar Water for other projects. So we did pull in a new pool of actors. We are good at that.
GS: What’s the next project?
AS: At the moment we’ve got the Write to Play initiative, nurturing new writing talent. We’re also developing a new adaptation of The Hunchback of Notre Dame for production in 2017. There is also a verbatim play around the Incapacity Benefit, the Employment and Support Allowance, that’s under commission.
GS: Whose voices are represented? Those who apply for or receive the benefit, or those in the bureaucracy who assess people, hand out the benefit.
AS: A bit of both but mostly people on the receiving end of decisions. We’ve got a doctor. We’ve got a legal aid person, a variety. We’re doing a taster session at the moment in aerial training building up to a project with war veterans in 2018 – an outdoor piece I think. It’s linked into the recent 1914-1918 reflections on the First World War. There’s a big artistic element to it all. We are very fortunate to be working in this profession on great projects with wonderful people. It’s a really odd time because for a lot of Deaf and disabled people at the moment they don’t know whether they’re coming or going.
GS: Are you referring to government austerity measures?
AS: Yeah but the profile of Graeae is really accelerating. The Company is being recognised for the work that we’re doing. We’ve got Ensemble starting next week. It’s an eight-month, work-based, professional-development programme for six young artists. They’re nineteen to twenty-five year olds and we’re training them as theatre makers. Jodi Alissa Bickerton is our Creative Learning Director. She’s running that programme. It’s in response to barriers faced by many Deaf and disabled artists, as well as a lack of diversity within the current theatre climate.
GS: How do you choose the participants?
AS: We get the information out there. There’s an application process. We audition, then we interview them and go from there.It’s difficult at the moment because the austerity drive is seriously impacting disabled people on a number of levels, work, living, health.
GS: Do you think disabled artists have a responsibility to reflect this in their art?
AS: I think disabled artists have a responsibility to their art. It’s a tricky one. I think it’s about choice. Some artists are deciding to reflect in their work what’s happening socially, economically in our society. Other artists feel that the art itself, no matter what it’s about, will create the shift, create the change. It’s a difficult choice but I don’t begrudge anyone for whatever the choice is that they make. I really resist the idea of hierarchical disability. Disability includes such a wide range of circumstances. It can mean so many different things to people. The wider the experience and the subject matter of our art, the better it is for changing perspectives. Graeae does a lot of advocacy work but it can be really relentless. The cuts are creating a lot of insecurity.
GS: How important do you feel disability-led writing and directing is to changing public perceptions around disability?
AS: I think everything needs to be driven by the story that the writer or the director is trying to convey. Sometimes that feeling of importance can be restricting and uncreative. Audiences are smart, open and intelligent. If you take them on a journey then they’ll go with it. If everything about a play or a show becomes agenda driven then it can fail in changing those perceptions. The story is the thing.
Colin Hambrook was educated at Dartington College of Arts in South West England. Knitting Time, his exhibition of paintings, drawings and poetry about the experience of psychosis is on show at The Hub, East London until 15 November. The work was previously shown at Pallant House, Chichester and the Impact Arts Fair 2013. Colin’s first collection of poetry, 100 Houses was published by DaDaSouth in 2011, followed by Knitting Time (Waterloo Press ISBN 978-1-906742-65-2). He is the founding editor of Disability Arts Online
The interview was conducted by Gaele Sobott on 28th September 2015 at the Barbican Centre in London just before Colin attended the Creative Future Literary Awards at the Free Word Centre in Holborn.
Gaele Sobott: In Australia the visual arts and now dance appear to be surging ahead in terms of developing platforms and exposure for disabled artists. Literature is quite a way behind. In the UK disabled writers and literature seem to be better placed. What are the Creative Future Literature Awards and how is Disability Arts Online involved? Colin Hambrook: Creative Future is a Brighton-based organisation looking to promote careers of ‘marginalised’ writers and artists. Amongst those they support with their annual Literary Award are a certain number of disabled writers. Disability Arts Online is a partner. We have signed up to help them promote the program, get information out, reach people. In terms of literature in the UK, Survivors’ literature has led the way. GS: Please explain what Survivors’ Literature is. CH: The key organisation is called Survivors’ Poetry, founded in 1990 by four poets with direct experience of the mental health system in the UK. In a really short space of time it mushroomed into a huge phenomenon. It was a UK network of groups that all became affiliated, some of them became registered charities or not-for-profit companies in their own right and I would say between ’94 to ‘96 it exploded and was reported on in the media and really picked up on. It was important that the people who ran the organisation and wrote for Survivors’ poetry come from a mental health background. They had experienced mental distress, been through or had an intimate knowledge of the mental health system. GS: What kind of work were they producing? CH: In the 90s there was a kind of performance poetry format, going into day centres, resource centres, organisations working with people who had come through the mental health system, and producing workshops and giving people the opportunity to perform. So typically the first half of an event would be open mic encouraging people to get up and perform their writing and the second half would be more experienced performance poets. The organisation still exists with a core force of people in London but it has become less prominent elsewhere in the UK over the last ten years. GS: Why do you think that has happened? CH: Survivors’ Poetry’s strength was in its Community Arts ethos, but it has become harder to find funding for grassroots work. It’s hard to keep integrity, supporting individual artists creativity at a grassroots level whilst maintaining support for ‘professional’ artists. Survivors’ Poetry turned to producing a literary output, which has been fairly successful. As part of the Unlimited showcase at London’s Southbank Centre last year, Disability Arts Online and Survivors’ Poetry celebrated the achievement of the organisation with a reading by some of the Survivors’ founding poets in the Saison Poetry Library in the Royal Festival Hall. The library contains twenty-seven titles under the Survivors’ Press imprint. GS: Has Disability Arts Online managed to keep its integrity? CH: Disability Arts Online in the last ten or twelve years has kind of managed. It’s a bit like a dance, you want to keep your core constituency on board and to nurture that talent, but also you’ve got to watch out, keep an eye on the priorities linked to where financial support can be found to ensure funders’ demands are satisfied.
For instance we have a modest contract with Unlimited to report on all of the artists and all of the projects that come out of Unlimited. It’s a fantastic opportunity to spread the word about this important initiative. Much of Unlimited’s aims and values concur with those of Disability Arts Online, working to support the development of art by disabled artists within the UK cultural sector. Disability Art Online’s brief is to interview the artists, review the shows, comment on the work as it progresses, and where possible, to commission copy for other online magazines and press in order to facilitate the reach of Unlimited to new audiences. Unlimited had a fairly substantial presence at the Edinburgh Fringe Festival this year, with several pieces of work in the British Council Edinburgh Showcase. Unlimited is spearheaded by two organisations: Shape and ArtsAdmin and they’ve received support from the British Council in facilitating the artists taking their work outside the UK. In many ways it is a bright, shiny success story.
We have to work hard to ensure our integrity isn’t compromised, which means creating projects that support and create opportunities for our core constituency and looking to remain disabled-led as much as possible, whilst also working with the high-profile initiatives. Without the support of Unlimited many of the artists we work with would never have got the profile they’ve achieved. For example Jess Thom was unknown as a performer before her company Touretteshero received an Unlimited research and development commission for Backstage in Biscuitland. After a year or so of touring she has been commissioned by Channel 4 with a version of the show made for television, Broadcast in Biscuitland. GS: So does your core constituency consist of disabled artists at grassroots level? CH: Yes, disabled artists, writers, who are what the Arts Council term as emerging artists. They are people who create because they’ve got to create, not because they’re making a living out of being artists, necessarily. GS: Is it possible some of these artists could find themselves forever classified as emerging because of the nature of the market and the value system used to categorise their art? CH: Yes but that’s just the label that the Arts Council puts on it. People are creative because they need to be creative and creativity isn’t a commodity. We have this schism in our society that divides creativity up into commodity and art. It’s nonsense really. GS: You mentioned that much of the art by disabled performers at this year’s Edinburgh Fringe Festival focused on the body. Can you please talk more about that? CH: Yes that’s not necessarily a bad thing. Culturally it’s very different from disability arts of possibly ten, certainly fifteen years ago where the focus on impairment was frowned on. GS: Was that in defence of the Social Model of Disability? CH: Defending the Social Model but also it was much more then about community and about people raging against the machine, standing up against discrimination, being a collective force. What’s happened is that as the focus for disability arts has moved away and broken up into impairment-focused issues, which I think are important . . . GS: Why do you think these issues are important? CH: Because the key problem with what I would call the first wave of disability arts from the mid 80s to the end of the 90s was that it was very much inward-looking and there was a very powerful community of disabled people who were very clear in their aims and making strong art for and by disabled people. Indeed we got the DDA (Disability Discrimination Act 1995). Not the DDA we wanted but we got the DDA. What happened then was that the very clear, concise stand against discrimination got diluted and the Social Model as a source of inspiration and power for people to find a voice kind of hit a brick wall because impairment within the Social Model wasn’t really addressed in a very strong way. So all the slogans like, Nothing About us Without us, the focus on things being disability-led, kind of fell apart when certain disabled leaders, say for example a wheelchair user, didn’t understand all the politics around Deaf issues or blind issues. Having disabled leaders is important but having that broad understanding of access and the issues faced by people with different impairments is more important. GS: Isn’t it possible to have disabled leaders with a more complex understanding of disability, Deaf experiences, impairment? CH: Yes that is the ideal, yes. GS: Why hasn’t that developed or has it? CH: There’s a choice that happens in either developing the politics or developing the arts. They can go hand in hand and work with each other and they can also work against each other. The emphasis from the funders has been that if you want the money you have got to develop the aesthetic, you’ve got to develop the art. The politics have been sacrificed to a large extent. A big part of that politics is the importance and value of work being disability-led, because at the end of the day, it’s the experience of being disabled by society that motivates us. GS: With this huge austerity drive and all these cuts do you think there is more of a need now to develop disability political leadership and action? CH: Yes there is more of a need now than ever. Absolutely. GS: How do you see that developing given what you have just said? CH: It needs people with courage to come forward and start demonstrating on the streets again. GS: Do you see the march to Downing Street on Saturday protesting the changes being made to Access to Work as an example of this? CH: I’m really angry that the government are cutting Access to Work. In this case the government said they will cap what any one BSL interpreter can earn at $40 000 a year. But who the hell in the arts is earning forty grand a year? Very few I would say. So the demonstrators were protesting the cuts in Access to Work with this cap on how much an individual can earn. There are thousands of disabled people dying because of cuts. The government is playing a game of divide and rule. On the one hand they are saying they want to get all disabled people into work, but on the other they’re denying means to make working an option. There needs to be a clearer focus in standing up to these issues. GS: So are you saying that political leadership and analysis are lacking? CH: Yes GS: When you say there is a need for people with courage to come forward, the courage to do what? CH: What the hell do we do in this political climate? I got very involved in supporting the 10 000 Cuts and Counting protest. At the end of 2013 we were working with Michael Meacher MP and the Dean of St Paul’s Cathedral. We met Michael Meacher in his office in Downing Street. He had a mass of files of printouts, of emails and letters of people who had written to him of their plight, their family’s plight, what was happening as a result of austerity, what was happening as a result of cuts in disability benefits. The main focus was that over ten thousand people had died within six weeks of being declared fit for work because their benefits had been cut and they’d been left with no money. Those individuals didn’t necessarily pass away because of the cut in their benefits, but equally, many did. Can you imagine the indignity of being on your deathbed and getting an official letter from the Department of Work and Pensions telling you that you are fit for work? And this has happened to many thousands of individuals and their families. There has been a very dangerous shift in attitude that as an individual living in this society you have to prove that you are financially contributing to it for your existence to be valid. We’ve gone back to the Victorian age within a few short years with the ruling class and their bastard politics. They’ve got every evil connivance of screwing the tax payer and they’ve got the media sewn up so they can infest everyone’s brains that it’s disabled people who have brought austerity upon us, that have brought down the economy. It’s evil! GS: So do you think it is the responsibility of disabled artists to identify as part of the community and bring the politics into their art in some way? CH: I personally think it is but then who am I to demand that of an individual? I encourage individuals to get involved in Disability Arts Online who have that ethos. I would say though that generally this time around people are finding it much harder to stand up for their rights. GS: Why do you think that is? CH: Well I would include myself in this criticism and say after the DDA was established, the disability movement never really went out of its way to include younger people. So we’ve still got the same old codgers now trying to make a stand like they did twenty or thirty years ago. People are older and frailer. GS: The older people may no longer have the physical strength but they have knowledge. Do you think younger people are separated from that history, that knowledge of what has gone before them? Are they expected to reinvent the wheel? CH: Yes and the tendency of Neoliberalism is to encourage people into their own little camps, individualism, losing sight of the larger collective. GS: Do we need to theorise how to change that and if so how? CH: It has to happen. I think going back to what we were saying earlier there is a value and an importance in the work that has become the key focus for disability arts – the relaying of stories about the body, stories of people’s experiences of individual impairment, of discrimination. GS: How does art play a role in changing public perceptions? CH: Art has a key role to play. You might not call an ITV soap opera, art, but in terms of popular culture, it’s much more wide-reaching than most art. And so for example, Liam Bairstow who trained with Mind the Gap has recently got a lead role in ITV’s Coronation Street. I think that a young actor with learning difficulties being seen on TV is definitely going to change attitudes, make a lot of people think and those changes are really important. GS: It seems you are saying that change needs to take place on many levels. CH: That’s where disability arts is at now I think, certainly within the performing arts, and within the visual arts. In the visual arts there is possibly a bit more politics. GS: Going back to individual courage – someone may have the courage needed to come forward but if others don’t join with that person it could be very demoralising. What is your experience in this regard? CH: Well yes, for me, we went to all that effort with 10 000 Cuts and Counting and none of the media turned up and it was all forgotten very quickly. No one took any notice. Nobody seems to care that many thousands of disabled people died because of cuts. Nobody thinks that could be me, or that could be a member of my family. GS: You said the media didn’t pick up on the story. Disability Arts Online plays an important role in providing an alternative media source. CH: Yes we do provide an alternative media and we keep plugging away. GS: You started Disability Arts Online in 2002, and in 2004 you set it up as a not-for-profit company limited by guarantee. So it’s been running for over eleven years. How do you fund the organisation? CH: We’re constantly working on funding applications for projects. We have a broad vision for how we operate in terms of raising debate about disability arts practice and supporting the work of individuals and organisations across art forms.
We’ve recently received funding from Arts Council’s Grants for the Arts scheme for Viewfinder over the next eighteen months. Viewfinder will see us working in partnership with Wikimedia UK, Sick! Festival, SPILL Festival, Carousel, the New Wolsey Theatre and Goldsmiths Disability Research Centre. It’s very exciting. Wikimedia UK are keen for us to populate Wikipedia with pages dedicated to disabled artists and a history of the movement. The Disability Research Centre at Goldsmiths University is supporting us in running a series of workshops.
We’re producing a video platform and commissioning disabled artists/filmmakers to curate a selection of disability work from the archives of Sick! Festival in Brighton, SPILL Festival in Ipswich/London and Carousel’s Oska Bright Festival. We will produce videos commenting on the importance of the selection in advancing the practice of disabled artists. So, for example Matthew Hellett, who is a learning disabled filmmaker on the Oska Bright committee will be making a film about what makes for good representation; how the committee judge the best films for Oska Bright. We’ve also got another year of core funding from the Esmée Fairbairn Foundation, which is renowned for funding organisations with a community remit. GS: Have you come up with ideas for sustaining Disability Arts Online on a more long-term, financial basis? Have you tried financing the group by any means other than government funding or philanthropy? CH: We’ve tried a few experiments. We recently worked with Stopgap Dance Company. They produced the Independent Fringe platform in Edinburgh. Disability Arts Online produced a crowd-funding platform for one of the younger artists, Rowan James. That was successful. We raised £1500 towards getting him to the Edinburgh Fringe Festival. We want to do more of that. GS: You have described how outside funding can determine the path you take. So if you want to be independent of those demands and priorities in terms of changing the political situation how do you achieve financial independence and sustainability? CH: Well yes sometimes you feel that the odds are stacked against you. It is a constant struggle. We need time and energy and imagination to come up with strategies. We have a shared knowledge and experience that can be incredibly useful to many industries, so we are also working to find ways to be more sustainable through consultancy and media partnerships. GS: You have shared your childhood and some challenging personal experiences through your poetry in a way that must be quite confronting but hugely important in terms of supporting people within the Survivors Movement and people who may feel isolated. Would you like to comment on how art can provide a form of community solidarity and empowerment, especially in reference to your latest collection of poetry, Knitting Time?
Knitting Time by Colin Hambrook
CH: I’d like to think that Knitting Time had value in giving a voice to issues around mental distress. Mostly, psychiatry condemns individuals to the judgement of a medical imperative, which locates mental health problems in the head divorced from the individual’s life experience and circumstances or indeed from any emotional impact located in the body. It treats the individual as having a separate, disconnected body and mind and introduces powerful and potentially harmful drugs to suppress experience deemed as mental health problems. Often, those experiences can be exhilarating and creative even if they can make it harder to function in the ‘real world’. Often mental health ‘issues’ are a matter of an individual having the confidence to be comfortable with who they are.
So in sharing some of my own journey I would hope to break some of the isolation people feel. There is empowerment in hearing others’ stories, others’ expression. There are poets like John Clare and William Blake whose names come up frequently in terms of writers whose core work continues to inspire empowerment within a survivors’ community. There was a poem by Ellen Link that I go back to again and again that inspires my sense of the value of connection; and connection with nature as a healing force in contradistinction to this narrow framework we are meant to fit in with when it comes to being seen as valid, mentally healthy members of society: “In the woods they blast/ your courage to tell you/ you are not a tree, that the wild wind /and the grey skies are not your cousins/ though their atoms be like yours. . .”
Gayle Kennedy is a proud member of the Wongaibon Clan of the Ngiayampaa speaking nation of South West NSW. She is an award-winning writer and has published work in newspapers, magazines, literature journals, and for radio. She was the Indigenous issues writer and researcher for Streetwize comics from 1995-1998. Her book of poetry, Koori Girl Goes Shoppin’, was shortlisted for the David Unaipon Award in 2005 and her prose work, Me, Antman & Fleabag[1] was the winning entry in 2006. She wrote eleven books for the Yarning Strong series. The Series won the 2011 Australian Publishers Association award for Excellence in Educational publishing. Gayle is a disability advocate and has spoken widely in Australia and overseas on disability and the arts.
Gaele Sobott: Can you tell me about your background? Where you were born, where you grew up, a little bit about your family?
Gayle Kennedy: I was born in Ivanhoe NSW and we moved to Hay when I was seven. In between, from the age of two to five, I was in the children’s hospital in Camperdown and then a rehab hospital in Wahroonga, then the Royal Far West in Manly recovering from Polio
My mother and father were both born in Condoblin but Dad’s family is from around Cobar. Mum’s family comes from the Euabalong area. Mum and Dad met when they were seventeen, working out at Wilcania. They’re both eighty-three now and they’ve been married sixty years this year. They had six children, four girls and two boys. One of my brothers was killed in a car accident at the age of eighteen in 1976. Dad worked for what was then the Department of Main Roads in the Central Darling Shire. Mum worked for a long while cleaning in hotels but gave that up about thirty years ago. They’re both retired now. I grew up with their stories. My parents’ story is in the national library. Francis Rush did that. She did an interview with me too about my experiences of polio for the Social History of Polio Oral History Project.[2]
GS: What are some of the memories you have of your childhood?
GK: I have vague memories of being in an iron lung and learning to walk again. My memories are mainly of me going backwards and forwards between home and the Far West. I remember loving rehab. It was the only home I knew at that stage. I was surprised to find out that I wasn’t from there when my parents came to pick me up. The first part of Me Antman & Fleabag where I write about the hospital is pretty much based on that time. The rest of it is fiction.
GS: Talk a little about your school experiences.
GK: When I was at the Far West I went to school there and it was okay. Because of the polio treatment I didn’t start school until I was seven. I went to the Convent school in Hay and the nuns were very good teachers. It was a great place because there was absolute zero tolerance of bullying or racism. Then I did one year at Hay Public School, which was awful. There were a couple of kids that bullied me and the headmaster was very racist and treated me like an idiot. Fortunately the teachers realised I was bright and totally ignored his directions to put me in the lower classes. So I got to work at the level I was used to which was the advanced level.
Then I won a two-year scholarship to go to Queenwood here in Sydney, at Mosman, right on Balmoral Beach. Violet Medway was one of the principals then. They were into providing a high standard of education for girls. No domestic science or any of those subjects that used to be taught to women. I loved English and History. I was a bit of a daydreamer – never really concentrated. I was always off in another world when they tried to tell me stuff. I generally crammed for exams. I was at Queenwood from age seventeen to nineteen. I made great friends there.
GS: Describe your early adulthood. What were you doing in your late teens, early twenties? What were your interests?
GK: After I finished at Queenwood I went to the Commonwealth Employment Service in North Sydney to look for work. That’s what you did in those days. They found me a position at the Australia Council as a clerk, Grade one. I went for an interview and got the job. I had a ball. It was fun meeting lots of fabulous people like Gillian Armstrong, Jane Campion, Gary Foley, Brian Syron, George Miller. They were just starting out in those days.
I was living in Cremorne, sharing a place with four guys. It was great fun. I’d go to the beach, go to the theatre. I liked Shakespeare and Ibsen. Reg Livermore was big then. I loved the Rocky Horror Show. There were a lot of new Australian plays happening. I’d go out to listen to bands. Live music was popular then in the pubs – blues, jazz and rock. We’d listen to bands like The Sports, Mondo Rock, the Divinyls. Cold Chisel was starting out. It’s changed now. People moved to the inner city areas from the North Shore, places like that, and started complaining about noise. Gentrification changed the live music scene and also poker machines took over in the pubs as the main entertainment.
I did my share of partying too. Everybody danced, played records, got stoned, got laid. I had lots of relationships – a couple long term. One of them lasted for ten years and one for about four years. I ended up being bored. I didn’t find them exciting or interesting anymore. They were good men but I never really took to being tangled up with anybody.
GS: Music seems to play a big part in your life.
GK: I’ve always been obsessed with music every since I was little. I like melodic music. If I like a piece of music, I want to know all about it. Who wrote it and why – the whole history. My tastes range over a lot of genres from Joni Mitchell to Hank Williams, Bob Dylan, Nancy Wilson, Sarah Vaughan. I listen to music all the time. It lifts my spirit and takes me to another place. If I’ve got a religion, it’s music.
I can remember singing when I was very young, maybe two, the old country songs like Don’t sell Daddy any more whiskey. Both my parents played and sang socially, at celebrations, weddings, funerals. Mum sings and plays guitar, piano accordion and piano. Dad sings, writes songs, plays guitar and performed around the traps.
GS: Tell me more about your work life and career.
GK: I stayed in the public service for years. I worked for a while with People with Disability and various community centres. From 1995 to 1998 I was a writer and researcher for StreetWize comics. I worked at the Aboriginal Medical Service and the Aboriginal Legal Service doing clerical work, research work, report writing. Then I started at the Attorney General’s Department as a policy officer around Aboriginal justice. I got sick of that and left in 2008. I’ve been a writer ever since.
GS: Why did you get sick of working at the Attorney General’s Department?
GK: Every time something good was happening the government would pull the pin. There was too much double speak, too many weasel words. I didn’t like the attitude of a lot of the young people I was working with who’d grown up not really knowing about hardship or what was really going on with Aboriginal people in the justice system. There’s no fire in their belly. They pay lip service to the struggle that went on but I don’t think they really acknowledge that struggle or give a damn. I just wanted to be out.
GS: How did you start your writing career?
GK: I had a plan before I left the public service. I started entering writing competitions. Irena Dunn initiated the Inner City Life writing competition in the mid 1990s when she was director of the NSW Writers’ Centre. I submitted a poem for that which was highly commended. The following year I won the competition with a prose piece called ‘Life’s Good When Ya Know How’. I liked the piece so much I expanded it into a book and entered it for the 2006 David Unaipon award. I won and everything grew from there.
I was commissioned to write a graphic novel as part of the OUP Yarning Strong series. One by one the other writers who had been commissioned dropped out so I ended up writing those stories. I published eleven books with the series. The illustrator was Ross Carnsew. I’d worked with him before on StreetWize.
GS: How do you find writing to a brief for children?
GK: It was challenging writing for a particular age group but I managed to make the stories interesting. I wrote the kind of books that kids want to read. You just think back to when you were a kid and put yourself in their shoes. I don’t use big words when I write for adults. I like clean, simple, lean writing. So writing for children is not difficult for me. With Yarning Strong I was given a word, family, land, lore, culture. I wrote whatever I liked around the subject.
The books went into the schools. Apparently they are much loved and are still selling very well. They were the overall winner of the 2011 Australian Publishers Association Awards for Excellence in Educational Publishing. The series was also awarded Best Student Learning Literacy resource for 2011.
GS: Your work at StreetWize was specifically for low-level literacy readers, Indigenous and non-Indigenous. Do you think there is a need for more of this kind of writing?
GK: Well there is no real organisation doing that kind of publishing anymore. Yes there is a definite need for more. It was a great way of providing for kids and adults with low-level literacy. StreetWize publications were very mobile, very accessible. You’d find their comics in waiting rooms, classrooms, wherever. It relied on government grants and was closed because of lack of money. Howard got in to government. Need I say more?
GS: What was your experience with writers’ festivals and the media directly after winning the David Unaipon award? How were you received as a writer with disability?
GK: I was only invited to three writers festivals – Sydney, Darwin and Brisbane. The festivals didn’t want to have me because it meant paying the extra fare for my personal assistant. The organisers didn’t check that accommodation and venues were wheelchair accessible which made it difficult. There were no radio interviews, no press. The other David Unaipon award winners got a lot more attention. I think that was to do with me being an older writer and one with disability. Writers’ festivals like the young writers.
But Me, Antman & Fleabag is still selling after all these years and now it’s starting to sell overseas. That’s mainly due to social media and word of mouth.
I think writers today are expected to have the kind of face that looks good on magazine covers, to be celebrities, attractive in that way. They have to be highly visible, good with sound bites.
GS: You’ve written about people with disability as being ‘the shadow people’. What do you mean by this?
GK: People with disability are often in the background, in the shadows. Everyone else gets up to talk for us, which I find very frustrating. We’ve got voices!
GS: How does being Aboriginal, Disabled and Woman play out in your life experience?
GK: I’ve never experienced any major problems with being a woman or being Aboriginal. I’m very proud of being Aboriginal. In terms of my writing, I don’t like the way the literary scene ghettoises books. For example, if you walk into a bookstore you’ll find my book lumped into the Indigenous section when it should be in the humour section. Indigenous writing should be categorised as part of the mainstream.
I’ve always done everything I wanted as a woman. Disability is the lowest on the pole in my experience. I think leadership is the key to changing that. Too often it is the hands of people who don’t have disability. I never took much notice of it when I was young. It was later in my life when post-polio kicked in and I realised the physical barriers and obstacles, discrimination, people talking over you or to whoever is accompanying you rather than to you.
I think there is some change happening, more and more people are coming out but they don’t get the opportunities to voice their concerns. They’re not given the stage. People without disability write about people with disability and they’re given the glory and the money. You see that at the writers’ festivals and in the media.
GS: What other changes would you like to see happening in the Australian arts and cultural sector?
GK: I’d like to see a broader and more representative spectrum of writers and actors. I mean Australia is so white. You turn on the television and you’re lucky to see a black face or an Asian face or Arab face. I don’t know whose reality it’s supposed to be. I’m so tired of watching those programs about young, hip and happening people in their shorts doing up a house. Until the public starts demanding more substantial entertainment it’s not going to change. Why would production houses and TV executives spend a couple of million dollars creating a drama or a comedy when all they have to do is put some want-to-be in a house or in a kitchen. Cheap as chips.
We need to get in the door. If I got my foot in that door, I would change what goes on inside!
GS: Iva Polack from the University of Zagreb writes that Me, Antman & Fleabag ‘ . . . is an observational comedy and a dark satire of Aboriginal contemporaneity asking the reader to get into the circle of laughter by simultaneously laughing with, at and back.’[2] What role does humour play in your work?
GK: Humour is very much part of what I write. Even in the most serious sections, I like to have a laugh and to make people laugh out aloud. Humour is very important. Sharing laughter makes you feel good. That’s what it’s meant to do. The old saying goes, if you didn’t laugh you’d cry. Laughter is up there with music in life.
GS: Do you think there is something distinctive about Aboriginal humour?
GK: Yes, Aboriginal humour is pretty much at the expense of other people, taking the piss out of yourself and people around you. It’s often anecdotal and based on love and trust. You’re comfortable enough to laugh with each other. It’s clever. You’ve got to be very quick, nothing gets missed, and it’s very much observational. It’s a humour that engages deeply with what’s going on around us.
GS: What are you working on at the moment?
GK: I’m doing a lot of talks on disability, on writing, whatever pays the bills. I would like to be writing my own book. I want to do a three-part story looking at my life and experiences with polio, intertwined with my parents’ lives.
GS: How have you changed over the last forty years from the time you first lived in Sydney to present day?
GK: I took every advantage of being young, good looking, carefree. Now I don’t need to be going out all the time. I’m happy with my own company. I wasn’t for a long time. I’m glad I made it to sixty. I’m a lot more tolerant of people. I think a lot more deeply about things.
I don’t miss living in Hay. I haven’t been back there for a couple of years but I’ll be there in October for my parents’ sixtieth wedding anniversary. I do miss the people. Sydney is my home, my friends are here and I’m comfortable. I’ve lived here longer than I’ve lived anywhere else. I started out on the north side, Neutral Bay, Cremorne, Manly then moved to Balmain 1977. I’ve been here ever since apart form a two-year stint in Newtown. That was too hip for me.
I write now. I never would have back then. I was too busy going out having fun.
GS: In your keynote speech at the 2014 Scribbler Forum you said, you have not been a political person. It seems to me that you are a very political person determined to bring about change in a number of areas including for artists with disability.
GK: I guess I am but that’s only emerged in the last few years because I realised you can’t effect change by staying silent.
Notes:
[1]Me, Antman & Fleabag,Paperback, 130 pages. Published September 1st 2008 by University of Queensland Press [2] Gayle Kennedy interviewed by Frances Rush in the Social history of Polio oral history project [sound recording] http://catalogue.nla.gov.au/Record/6184496 [3] Iva Polak, ‘To Laugh, or Not to Laugh – That is the Lesson: Gayle Kennedy’s Me, Antman & Fleabag’ presented at Australasian Humour Studies Network Annual Conference, hosted by Flinders Institute of Research in the Humanities at the State Library South Australia, 4-6 February 2015
This interview was conducted in Balmain, Sydney, 12th June 2015
One of the more well-known slogans of the disability rights movement is “Nothing About Us Without Us” – the recent closure of ABC’s “Ramp Up” accentuates the fact that there are very few of “US” in the Australian media, literature and writing sector.
For many years, South Australia was the only state to run a program, through the SA Writers’ Centre, for writers with disability. In 2012 Arts Access Victoria and Writers Victoria took up the baton by launching the Write-ability project, supporting Victorian writers with disability to develop their skills and writing careers. At the 2014 Emerging Writers Festival in Melbourne, Write-ability proudly showcased six of its emerging writers.
Accessible Arts NSW began the process of addressing the barriers faced by writers with disability in NSW by organising the SCRIBBLER – Literature Forum at the NSW State Library, on 24th June this year. I was pleased to be invited to convene this event. Writers with disability gathered together with industry professionals to hold critical conversations around what we see as key concerns. Examples of these concerns are leadership opportunities in the sector, inclusion in festivals and on writing platforms, and changing the culture surrounding disability in the arts.
The keynote speaker at the Forum, Writer and Editor, Gayle Kennedy described in detail some of the access barriers she has faced as an award-winning writer who uses a wheelchair. One example she quoted was organisers refusing to pay her carer’s airfare, which meant Gayle was prevented from attending major events:
[As a] David Unaipon Award winner ‑ I did not get to go to any other writers’ festivals. Year in and out every award winner is invited to the festivals. But I didn’t. I didn’t get to go to Melbourne. I didn’t get to go to Adelaide. I didn’t get to go to Perth.
The presenters on the “Writing the Boundaries” panel gave specific examples of the discrimination that effectively nullifies or hinders equal opportunity within their chosen occupation of writing. The experiences are complex and varied. Georgia Cranko, a writer and performing artist talked about privilege and oppression in her life, “…I am often marginalised in situations, but I have been fortunate to be equipped with tools that allow me to push through that oppression and neither be crippled by it nor defined by it. My intellect has always been doubted by strangers.” She feels lucky that she can prove her capability through her academic work and writing, not only to others but also to herself. She related how the physical manifestation of her impairment sometimes offers her privilege in comparison to people whose impairment is invisible but “It also underscores the social issues that I deal with. If employers were willing to hire someone like me, I wouldn’t need to rely on the government for the pension or be terrified that it will be cut…”
Amanda Yeo, a writer from Sweatshop Western Sydney Literacy Movement, refuses to be defined by her impairment, and does not accept the limiting inspirational, tragic or superpower tropes that are used to characterise people with disability in the media and literature. She has found writing to be an excellent way to explore her identity and learn to be comfortable in her own skin. She said,
I’m not saying we should write about people who find their disability a constant factor or concern, and I’m not saying we should only write about people with disability…I’m not saying we have to write about people with disability all the time; I’m just saying write about people.
In describing our embodied experiences of trying to work within a disabling world, the writers rejected posturing on disability by writers without disability. Historically people with disability have been the objects of research, not the researchers. We have not been seen as writers but have been written about and acted upon. The obvious way to change this is for writers with disability to write about disability themselves.
Gayle Kennedy called for affirmative action in relation to creating disability leadership opportunities, and dedicated disability access and arts funding. Affirmative action is a concept that is shied away from when discussing solutions to disabling experiences of discrimination in the arts. It is possibly the idea of quotas and succession plans that scare organisations. I think there should be a focus in Australia at this time on meaningful employment targets for artists, arts managers, arts organisers and arts workers with disability. I think we should also be focusing on effective leadership succession plans for people with disability in arts organisations, especially arts and disability organisations. But I would also emphasise that affirmative actions include training programs, outreach efforts, and many other positive steps. Jane McCredie, Executive Director of the NSW Writers’ Centre suggested that writing and literature organisations should include an access component in their budgets. I would love to see the creation of a national literary prize for writers with disability. Some publishers are beginning to actively seek out manuscripts by writers with disability. Every small step is a welcome contribution to shifting attitudes, and to creating a critical mass of people with disability in key positions in literature organisations, performing on literature festival platforms, and publishing their work.
To bring about change to the disabling aspects of our industry, I think we also need to develop a more precise understanding of how gatekeepers determine who becomes literate, who learns to write, who gets funded, what the funding criteria are, who publishes, who gets publicised, promoted, invited to read. The gatekeepers are in the media, in schools, community centres and arts organisations. They are publishers, festival directors, book reviewers and event organisers. Gatekeepers may also include parents, carers and community capacity officers. They are the people who decide. They are the people who assist in forming understandings of disability, the value and often the content of our work. They form the dominant norms of the system we live in. Gatekeeping can be subtle or blatant. We hear story after story of young people with disability being told by a parent or a teacher that they can never be a writer. Many publishers are known to prefer promoting an author who fits snugly into the narrow physical realm of normalised beauty. Festival organisers prefer a writer who can travel freely without extra accessibility costs rather than a wheelchair user. By understanding how gatekeeping works we are in a better position to design affirmative actions. In terms of creating leadership that will bring about change it is already clear that writers and arts workers with disability need to access positions of power. These include positions such as publishing editor, publicist, festival director and policy maker. We need to be on the employment interview and funding assessment panel, and the board of arts organisations.
Although I’m not sure how literature as an art form fares, the Australia Council for the Arts is leading the field at the moment in providing dedicated funding for artists with disability and a focus on leadership and disability. The Council sponsored the UK based artist and disability activist, Jo Verrant’s recent talks on the transformational potential of employing disabled people in leadership roles within the cultural sector – not just for those individuals themselves, but for the invigoration of cultural strategy, and for the benefit of all. By including writers with disability we are opening up literature to diverse perspectives, writing that stretches beyond the boundaries of traditional literary form, writing that defies genre, and the way we receive and understand normalised bodies and language. Joanna Agius, a writer and Deaf Arts Officer at AARTS NSW argued the case for writing in AUSLAN and creating AUSLAN books, which brings a whole new dimension to the category of “literature”.
I recognise that discrimination is not always intentional. It can come about through fear and ignorance. In this respect writers with disability are crucial to shifting the culture that surrounds disability in the arts and in society in general. The power of literature lies in its ability to gradually shift perception, consciousness and then reality. To paraphrase the Belgian-Egyptian writer, Khaled Diab, the culture of power can at least be rattled by the power of culture.
There is a lot to be done. Many possibilities emerged from the Forum, including more genre specific discussions, regional forums, writer-with disability-led initiatives, the creation of writing resources for writers with disability, exploration and replication of the S.A. and Victorian mentoring programs, advocate/agents who approach publishers on behalf of writers with complex communication requirements, the development of diversity action plans. Many writers at the Forum commented on Executive Director of the Australian Society of Authors, Angelo Loukakis’, reference to the Women’s Liberation Movement of the 60s and 70s when “sisters were doing it for themselves”. There is a move amongst writers with disability to create their own writing groups, their own networks and their own performance and publication platforms. While writers with disability would like to find ways of sustaining these initiatives themselves, there is also a desire to agitate for taxpayers’ money to be distributed more justly across the arts.
It is essential for writers with disability, our allies in the sector, Accessible Arts NSW and industry professionals to follow up on the ideas and the momentum created by the Scribbler forum.
Sam Twyford-Moore, the director of the Emerging Writers Festival finished his presentation at the Scribbler Forum with a quote, “Festival directors are gatekeepers, but most enlightened gatekeepers take on the role because they relish opening the gates, not because they like slamming them shut. Most responsible festival directors are acutely aware of accessibility and diversity issues, and are driven by a desire to transcend those limitations, not to cement them.”
For the benefit of literature, the arts and society in general, let us now enlighten the gatekeepers. More importantly let “US” too become enlightened gatekeepers, attuned to the specific manner disability discrimination operates in the industry, and also to the form, content and location of discrimination against writers and arts workers who belong to other sections of society.
Highlights from the November 2013 Sweatshop WS Artists with Disability Seminar held at Writing and Society Research Centre, University of Western Sydney, Bankstown Campus, facilitated by Dr Gaele Sobott. The seminar was a chance for artists to discuss their stories and experiences, and the politics of disability.
Amit Sharma has been the Associate Director of Graeae Theatre Company, London, since 2011. He recently directed The Solid Life of Sugar Water, a Graeae Theatre Company and Theatre Royal Plymouth production, gaining unanimous acclaim at the 2015 Edinburgh Festival Fringe, leading to a 2016 UK tour including a run at the National Theatre.
Gaele Sobott 