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.


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