On Equality (or the lack thereof)

After the excesses of the year, it's a relief to be stationed at Parental Unit's, even if, having slept off my exhaustion, said Unit are starting to drive me slightly demented. The weather resembles an English summer, being 20 degrees C and overcast, with glimpses of sun, and I've been thinking longingly of the baking heat of Brisbane. However, I'm writing again, having started my third novel, and find myself in that delicious state of being swept into another world (that of a quiet man in a small coastal town), and am relishing the insistent tug of that pad of blank paper in the front room where rain spats agains the window and the dog has to be chased out for chewing Mum's cushions. My Christmas shopping is complete and Family have been instructed to get everything on my Christmas list. When Mum asked me if there was anything else I wanted, I answered hopefully, 'Shoes?' but that was rejected, as apparently I have enough of them. There was nothing else I, then, except that which only the powers that be can bestow.

Earlier this year, my boss and I, together with six universities and a number of other stakeholders, were involved in putting together a national grant application for funding into autism. We developed three core programs which were intended to facilitate research into autism over a course of ten years, addressing (broadly) conception and genetics, education, and finding a place in society. As part of the presentation of these concepts, my boss and I put together three videos that helped to illustrate these programs through interviews with parents of children with autism, and of a young man who had autism himself. Although I knew, on an academic level, that parents of children with autism have a difficult time, it wasn't until I listened to these parents how little support I realised they were getting.

One of the reasons why such parents are stressed is because the autism sometimes manifests in their child's behaviour and, because that child doesn't appear to have any physical disability, people may criticise him/her for failing to act like a typically developing child. This was illuminated clearly by a mother we interviewed whose son had once had a meltdown in the pool during a swimming lesson. The parent ended up in tears by the side of the pool comforting her son, who was deeply distressed. She was distraught too because she didn't know what was wrong, as by this stage she still didn't have a diagnosis (it would eventually take her four years to obtain one) and hadn't understood what might have triggered his meltdown. Another parent came up to her but, instead of offering comfort, said to her, 'Will you get your son out of the pool, so my child can continue his swimming lesson?'

Sometimes, the selfishness of people is simply beyond comprehension.

Another parent whose extremely bright daughter had Asperger's was unable to continue with her child's schooling, after trying four schools, because the bullying was so ferocious that her girl became too stressed to learn. Finally, the mother had to take her daughter out of school and homeschool her, at huge financial cost to her family despite, as she pointed out, this girl being a citizen of Australia, who was entitled to an education.

These parents illustrated the difficulties for their children when they were in school, but the problems certainly didn't end when adolescents reached the end of their schooling. Often, they find it difficult to get work and their life becomes immediately, and narrowly, circumscribed. This sense of 'falling off a cliff' happened to a young man with autism who desperately wanted to become independent when he left school but, because he had a disability which he honestly disclosed, he often couldn't get to the interview stage. Although organisations existed to help people with disabilities cross this bridge from school to work, they had a high turnover of staff and his parents, on using such an organisation, found themselves constantly having to bring new employees up to date. The young man became quite disheartened, as would any person in this situation. Eventually, he did find a position and his parents noticed this was therapy in itself. His self-confidence blossomed, social skills improved and his mental health picked up again. It would make sense, then, for programs to be put in place to get people with autism into jobs that suit them because it benefits both individual and society, but this simply isn't happening.

After coming across these heartbreaking stories, from parents and young people who have tried desperately to succeed in a world that is largely impervious to them, I simply couldn't understand why there has been so little funding for autism. Perhaps it's because it isn't a sexy disability. By this I mean you can't help a person with autism to interact with their environment more effectively with a piece of technology like a cochlear implant or a red hearing aid studded with diamonds, so it doesn't attract the numbers of high-tech researchers that, for example, deafness might. This is not, of course, to discredit a number of illustrious researchers who are in this field, numbering Andrew Whitehouse among them. And of course, my boss, who I think never gets enough credit.

Yet, while I was given free hearing aids, FM systems and adjustments to my classrooms (ie carpet to help with the acoustics) more than twenty years ago, a national funding programme for autism was only introduced in 2008 through the Helping Children with Autism package. This provided funding towards early intervention (ie therapies for kids up to the age of 7), but not for help beyond this age which, obviously, is almost an entire lifetime. As for all the parents who had struggled before this point, it has been, to put it bluntly, tough luck. For anyone interested in understanding what tough luck entails, I direct you to the non-fiction account by Tony Macris of his son's diagnosis with autism, and subsequent intervention via applied behavioural analysis, in When Horse Became Saw. Incidentally, Tony was a former writing teacher of mine, although I didn't find out about his son until I read his essay of the same title, which was shortlisted for the Calibre prize.

Given these instances of grave injustice in one of the richest economies in the world, it didn't really surprise me to come across this article noting a report by PricewaterhouseCoopers which had found that almost half of people with a disability in Australia are living in or near poverty, sending Australia to the bottom of the ranks of the developed world. In addition, Australians with a disability are half as likely to be employed as those without a disability, ranking them 21st out of 29th in the developed world. Tellingly, the response of John Della Bosca, former NSW health minister and national director for the national disability scheme's Every Australian Counts campaign, was that there was no reason why Australia couldn't do something about these rankings, as 'Fairness is part of our national character'.

This is hardly a statement that inspires confidence. For what kind of 'fairness' is in place in a country that leaves refugees languishing in detention centres like criminals, and who processes a paltry number of those people who have risk their lives for their families, when thousands more pour across the borders of Europe? Or has mining companies that pay lip service to the indigenous people whose land they are butchering and doesn't give a damn about adequate recompense? Or which is permitting another coal mine which may destroy the world's chance of keeping global warming to 2 degrees?

For a sophisticated analysis of this concept of being a good-hearted people who are prepared to help their neighbours, but who are routinely hostile to those who are perceived as 'other' such as indigenous people, foreigners, or the disabled, I highly recommend Jennifer Rutherford's The Gauche Intruder, which uses Freud and Lacan (yes, it's a battle!) to demonstrate how aggression manifests itself at the time Australians have set out to do good. For example, as I pointed out to my students of Australian literature, how can 'mateship' be such a great thing if it's means the exclusion of women and indigenous people, who also fought in the wars but receive so little recognition in comparison to white men? In these contexts, the words fair go or mateship automatically arouse my suspicion, rather than my respect.

Yes, the government has a great deal to answer for, but so too does its populace. Australians, for all their wealth, are stingy when it comes to charity, particularly in comparison to the US which has a history of philanthropy. Although I don't agree with the Christian overtones of Christmas (which appears anyway to have been hijacked from the winter solstice celebrations), I do endorse its culture of giving. It would be nice to see, in 2013, some of our millionaires (other than Dick Smith) and average Joe Bloe who, for all his whinging does have quite a good standard of living, donating 2.5% – 15% of their pre-tax income to charity. It would also be nice to see our politicians stop fighting like dogs over scraps, and to show some humanity and leadership. But perhaps that's one present that won't fit in Santa's bag.

The River

The Brisbane River, looping and curving through suburbs and high rises, drifting beneath bridges and nudging alongside parks, is Brisbane's defining feature. It draws cyclists, dog walkers, coffee devotees, runners and lovers to its edges, and what it lacks in sparkle, as with Sydney's harbours, it makes up for with its breadth and breeziness. Running over the Storey Bridge and along the floating walkway, I was one of many who believed that the riverside symbolised the city's laidback tenor. It was partly this insouciance, combined with a decade of drought that erased the memory of earlier flooding, that made the deluge of water such a shock. Even as flash floods in Toowoomba left people clinging to telephone poles and cars stacked against one another, crowds were gathering along the Brisbane River with their cameras and umbrellas (for it was raining still) to watch water swell against its banks.

With only the increasingly sensationalised media reports and a fevered imagination for company, and not wanting to be cut off from my sister by a creek that would definitely flood, I packed my favourite frocks, boots, handbags, novels and journals into a backpack and decamped to her place.

'Did you seriously bring all that shit?' she commented, seeing it spill over the floor as I unpacked.

'As if I would leave my Collette Dinnigan dress behind!' I returned. 'And my Spencer and Rutherford handbags, and my red stiletto boots from London!'

I was told I was an idiot.

The power was cut off at 3pm, so we went for a walk to look at the flooded creek. I had gone for a run that morning, and the paths upon which I had pounded were now covered in water. It crept insidiously over the foothpaths and road, while ants ran along drainpipes to find dry land.  A father rode his bike through through the water, followed by his small son who clearly struggled as the water came up to his knees.  The father didn't lift a finger to help.  Men in 4WDs and Range Rovers drove their vehicles through the water to shore up their brawn.  Sister and I sniggered.  The sun came out for what seemed like the first time in weeks, and burnt me in a hour.

Evening fell and, tired from adrenalin caused by said overheated mind and a general apprehension of the unknown, and having no light by which to read, I went to bed early.

My brother-in-law, being ex-army, was thrilled by all the drama, and on Thursday he was disappointed to find that the river wouldn't approach the same levels as the 1974 flood. Sister and I wandered off for a coffee at the local cafe, which was heaving and had run out of soy milk. A lady before us who also wanted soy went off to the shops, and came back with more, and I was a happy bunny again. I was even happier to get back home to power, a hot shower and internet.

My inconveniences were tiny compared to those whose homes had filled with muddy water and sewerage.  I went for a cycle on Friday around Docklands and New Farm and was dismayed and saddened by the streets piled with stained couches, chairs and general detritus. Volunteers were shovelling mud from the streets, New Farm Park was silted up and attended to by waterbirds, Sydney Street ferry had crumpled and a boat had mounted the boardwalk at Docklands. A marshy smell lingered in the air, reminding me of floods on our property when I was child.

Subsequent reportage has indicated the folly of allowing houses to be built on what are flood plains.  In addition, Antony Funnell points out how gentrification and greater urban density has meant that traditional Queenslanders, built on stilts, are now being renovated and closed in. The stilts were to allow houses to be built into Brisbane's hills, and to keep the upper levels dry during floods. After a decade without Dorothea Mackellar's “steady, soaking rain”, people had forgotten to build for Brisbane' climate.

Then there is the controversy relating to the management of Wivenhoe Dam, which is facing questions of whether more water should have been released prior to the flooding, and if the failure to do this in a timely way was in fact the cause of Brisbane's floods. While the dam management was undertaken in a complex and increasingly stressful situation, there were also several warnings from the Bureau of Meterology in the previous months about flooding. By the same token, having come out of this decade of drought, the decision to release precious drinking water would have had to be undertaken by someone 'with very large balls'. However, the lack of foresight extends beyond this, to a national level. As Germaine Greer writes in a surprisingly lucid article, the pattern of drought and flooding, of the interchange of El Nino and La Nina, has been well documented in Australian history. Given this, she notes, 'the rest of the world might well be scratching its head' as to why more wasn't done, why boats remains moored as the Brisbane River rose, why we have so readily relinquished our precious topsoil. It seems to be, as one person wrote in the comments, that we are 'living in a disaster prone country with mediocre approach to problem solving'.

Thus the blame game begins to gather momentum. Should home owners be held responsible for their lack of foresight in buying near the river, creeks or on the floodplains? Or should developers (such as Mirvac, who built the flooded Tennyson Reach and misinformed buyers of the risks from flooding) be held accountable? Or should we hold local government to task, for rushing to accommodate Brisbane's growing population with poor town-planning? Or should the management of Wivenhoe Dam be culpable? What is clear is that there needs to be more awareness of Brisbane's environment, as demonstrated on an intimate level by the original inhabitants of the area, the Jagera and Turrbal people, who were supported by the river's abundance of fish, shellfish, crabs and shrimps, and who lived with the environment rather than attempting to control it. Although such symbiosis is largely impractical in contemporary society, it does flag a more responsive relationship to the land which might have been useful in avoiding the floods.

While politicians squabble over funding for rebuilding, and Tony Abbott feebly attempts to hijack the floods to derail the NBN, the community has responded overwhelmingly. Queues for volunteers stretched around the blocks and were eventually turned away, clothing companies are donating 20% of profits and Queensland's writers are banding together to donate books, workshops and manuscript assessments. If any readers are after a copy of A Curious Intimacy, and would like to donate at the same time, visit here.  Also up for bids are manuscript assessments, performances, and a plethora of wonderful books. Please give freely and generously to add to your library and to help those who have been affected by the floods. Bidding closes at 11pm Brisbane time on Monday 24th January.

As the city struggles to restore itself, we are forced to revise our impressions of the Brisbane River. No longer does it seem a benign and beautiful feature of a carefree city. Rather, it is a force of which, having the capacity to wipe out life and livelihood, we should be wary. We would do well to remember its dormant power.

When it Rains

As I write, most of Queensland is underwater, hundreds of people have been dispossessed, kangaroos are being ferried to land in tinnies and still the rain slashes onto my corrugated iron roof. Two years ago we had dreadful bushfires in Victoria, and we are just emerging from a decade of drought. Australia truly is, as Dorothea Mackellar wrote in 'My Country', her iconic (if saccharine) poem, 'a sunburnt country … Of droughts and flooding rains', although climate change increasingly has much to answer for on that front.

One cold morning in London a few years ago, I sat in the British Library with a copy of Core of my Heart, my Country, a book I had ordered from the stacks purely because of its title, which hails from Mackellar's poem and which encapsulates my own bond with Australia. The book, by Maggie MacKellar, examines the relationships between women's bodies and the lands to which they emigrated (in this instance Canada and Australia), and how their confrontation with that land altered their sense of self.

However, before I even began reading, I was arrested by the acknowledgements. MacKeller paid tribute to her partner in a way that suggested he was no longer there. Something dreadful had happened, I sensed.

A year after I returned home I found MacKellar had published another book, When it Rains. My intuition was confirmed: the book detailed how she had lost her husband to mental illness and suicide, and then, shortly after, she lost her mother to cancer. By page 20, I was in tears.

Finding herself on the verge of a breakdown, MacKellar took her two kids and left her life in Sydney and the academic position which defined her, to live with her aunt and uncle on their property.

Like Joan Didion's The Year of Magical Thinking, the book is an account of loss in an attempt to make sense of it. Early on, MacKellar refers to Anne Carson's introduction to the plays of Euripides, in which Carson meditates on “why tragedy is so vital an art form. For [Carson], the tragedy becomes a frame that can be put around our grief. Inside the safety of that frame the violent expression of grief and rage can be played out without 'you or your kin having to die'” (p. 29). However, MacKellar found herself not as a character who acted out loss, but an actual person who had to deal with it.  Trapped within that frame of tragedy, she used writing as a means of stepping out of it:

For me it is the act of writing that unlocks the frame. I pin my tragedy onto the paper and with the precision of an anatomist take a scalpel to separate memory from bone. Perhaps if I can peel the layers of skin from its torso, it will stop having the power of a dark shape in the night. By writing, I risk sacrificing my deepest intimacies, but by writing, I control the shape they become (p. 29).

Interestingly, this evokes Darian Leader's The New Black, which details how we frame loss in order to let it go. Leader describes how in the dreams of the bereaved ‘a special motif frequently emerges: doorways, arches, stages and the many other features that serve to frame a space’ (p. 100). These dreams indicate how the mental images of those who are lost are becoming framed, and representational: they are entering the symbolic realm. ‘Mourning’, Leader continues, ‘involves a certain making artificial’ (p. 105). Given this, a writer’s grappling with loss naturally involves transmuting it into a literary form.

There are some writers, however, who wish to remain trapped within that frame. As I wrote in a recent article published in Southerly, Rosa Praed, the 19thC spiritualist and prolific novelist, longed to be haunted by her dead companion Nancy, for it signified that Nancy was still present.  In a similar way, Edgar Allen Poe longed to be troubled by his dead mother, with whose corpse he had been left alone at age 2, until they were found in the morning. When he became a writer, his work was littered with ‘the blank stare of the dead’ (p. 31), with cadavers, spectres and blood, as the memory of his mother’s corpse in all its permutations infiltrated his writing. Darian Leader argues that ‘Poe’s literary efforts to describe this encounter from every possible angle suggests that the work of mourning could not be completed. Rather than laying his mother to rest, her presence became increasingly real’ (p.31). Perhaps however the emphasis should not be laid on could not be completed, but rather on would not. For if the mourning process ended, so too would the dead (or whatever semblance he had of them) disappear forever from his life.

As I read When it Rains, I could feel the muscles of the book were tight with grief and anger, but gradually they loosened with happiness as MacKellar's children settled and her husband ceased to haunt her at night. MacKellar's descriptions of this haunting made it seem eerie and extreme – it wasn't just that her husband was in her dreams but that her body couldn't lose the physical memory of him; something which anyone who has lost a lover can identify with, but made more visceral by his complete, abrupt absence.

Indeed the intense physicality of the writing – which was present too in Core of my Heart — the descriptions of the sounds and sensations of the country – made me nostalgic and I thought, for a few seconds, about my friends' (disturbingly, only half-joking) suggestions that I go on “Farmer Wants a Wife” in order to shack up with a farmer and move to the country. However I'm sure I would end up like the woman in “The Yellow Wallpaper” if I tried country living: root-bound, neurotic, and angling into madness. Give me boutiques, cafés and the anonymity of cities any day.

But the difficulty with city living is that you lose – or indeed, never know – the experiences of our rural compatriots. It's too easy to turn off the television and close the newspaper, to worry about rain dripping through the hole in the roof rather than the river than pushed itself through someone's living room, or, if we go inland further still, to ignore the poverty of Indigenous Australians. For those of us whose lives are uncomplicated, whose bindings to those they love haven't unravelled, whose worst experience of all this rain is a sodden skirt or an umbrella bent backwards, it's important to remember that we have it easy.

Donations to the Queensland Flood Relief Appeal can be made here.

On Charity

For those of you who follow these posts and understand that I am not a morning person, you will appreciate the dedication it took to get out of bed at 4.45am, clothe myself and run in the darkness to the train station to catch the 5.45am to Murrarie to partake in the Bridge to Brisbane.  I sat very still and quietly in the carriage and was grateful that there were no loud noises.  However, as we passed more and more stops, and more and more eye candy got on, I perked up considerably. I couldn’t believe the number of people at Murrarie.  Another train pulled in but a minute after the first drew away and the platforms were crammed.  Again at the starting line there were thousands and thousands more.  I couldn’t hear what the loudspeakers were saying so I had no idea what to do, and neither did lots of other lost folk milling around (who presumably did have their hearing).  However I found a queue, shuffled along to the starting line, and finally there was space to run.

The atmosphere was fantastic and I was so delighted to be surrounded by so many healthy people in a country with some of the worst obesity statistics in the world.  The sun came up, showing smokestacks against the dawn.  A man dressed as a dragon passed, holding his disintegrating, green plastic suit.  A truckie honked at us and a pack of girls cheered us on.  There was a tall man in only his multicoloured briefs and sneakers, his Facebook name texta-ed onto his bare back.  Various bands were stationed along the way, playing motivational music. I have a lot of respect for someone who can belt out an 80s tune at 7am in the morning.

By the 5km mark my thighs were starting to hurt but I remained pleasantly distracted by all the fit men.  By 7km even they couldn’t take my mind off my legs.  I stopped for a drink, worried by the waste of the plastic cups littering the ground, which sounded like ice crackling underfoot.  By 8km I was consumed with pain and by 9km I wished I had trained more.  But then we reached the showgrounds and I sprinted the rest of the way.  I found my t-shirt, delivered to me by a friend from work, and limped to the bus stop.  There were no buses from the Gabba for another half an hour so I had to walk home, feeling sorry for myself, but also elated that I had achieved a goal, however mediocre it had been.

There was also, of course, the fuzzy glow of doing something for something else, which is one of the reasons why I work for Autism Queensland.  Yet, since undertaking this venture and pestering people for donations, it has startled me how little people are willing to do to help others.  Last week I bought a Big Issue from a man sitting on his milk crate outside the post office.  I have never bothered with buying a Big Issue before, but he looked so pinched and pale with lack of nourishment that I gave him what was left in my wallet.  As I did so, I realised that even that small amount I gave him would have improved his life, however meagrely.

This post is a final, blatant request for donations to help Autism Queensland with their work in early intervention (fundraising closes tomorrow night).  For those of you who have all your faculties, are able to work, have a roof to live under and enough food and loose change to buy beer or coffee or a bunch of flowers, please spare a few dollars for kids who have a difficult life.  Trust me, you’ll feel better.

On Running

I began this entry after an hour and a half of running along the Brisbane River in the sunshine.  Though I’ve been running for nearly twenty years, I haven’t exerted myself in this way since I first began, when I was 13.  Then, I was prompted by a body-image disorder and an obliterating crush on a boy, but this time the reasons are much healthier: raising money for my employer, Autism Queensland, in this year’s Bridge to Brisbane. I’ve never been good in team sports as meningitis buggered my balance and coordination, so the exercise that I do is always solitary.  Swimming I love for the feel of water on my skin, cycling I enjoy because I am besotted with my bicycle, and running is great because it’s the only time I ever stop thinking.  Instead of trying make connections in stories, or linking up concepts, I concentrate on the pain in my lungs and my knees, the rhythm of my feet hitting concrete and grass, and of pacing myself so I don’t hit the wall too quickly.

I’m by no means a natural athlete.  When I did athletics training after school I was often amazed by the ease with which the girls sprinted around the track while I had to push myself hard to cover the same distance.  However, what I lacked in ability, I made up for with stamina and sheer bloody-mindedness.

It was also while running that I fell in love with Australia.  Every afternoon, after school, I would run the perimeter of the paddocks of our property.  In winter, this meant running in the cold and the dark, but the air was dense and rich from the settling dew.  On the weekend I would take to the hills.  On summer afternoons the sun would pound on my shoulders and pull sweat from my skin, but it also drew out the scent of eucalyptus and the cloying smell of gum blossoms.  There were wild goats, and magpies that divebombed, and the solid block of sound from the cicadas.  To a lonely 13 year old with a disability who was having difficulty adjusting to adolescence, it was a haven.

I still have the drive that girl used to learn social skills, get herself a career and live overseas, and I’m using it again to run for charity.

‘Why don’t you just walk?’ Sister asked.

‘Oh no,’ I replied.  ‘You don’t understand.  If there’s a challenge, I have to rise to it.’

And of course, running 10ks is nothing compared to the struggle kids with autism endure just to get through life.  Autism is a social impairment, which makes it difficult for kids with the disability to read social cues and facial expressions.  They are often isolated, lonely and subject to bullying, which leads to depression and mental distress.  They sometimes have sensory issues which means they can’t, for example, filter sound in a classroom, so they are overwhelmed by hearing every sound around them and can’t concentrate on the teacher’s voice, so their education suffers.  If they can’t learn social skills, nor acquire a decent education, their options in life are drastically reduced.

Autism Queensland desperately needs resources to help people with autism in Queensland, so I ask all my readers to donate generously to this cause here.  I will write an update on how my knees and calves are faring in a few weeks.