Like all seven-year-olds, my eldest daughter Mia is full of surprises. One evening when she was four, I found her on the couch apparently whispering to the pages of an open book my mother had brought over. I got close enough to realise that she was reading it.
This was the girl so afraid of the alphabet only a year before that she would put her hands over her ears and run from the room when Sesame Street announced its letter of the day. How would she ever learn to read, my wife and I pondered. It turned out that Mia taught herself. It was a lesson in turn for us – not least for me to remind my mum not to leave her trashy airport novels lying around.
Our world was knocked sideways forever the day Mia, when two, was diagnosed with an autism spectrum disorder. We were in denial, probably out of pure shock. Because we knew no better, we thought an autistic child was one who never said a word, was in nappies until adolescence and was completely locked in their own world and unable to engage with the outside one. There are certainly people whose lives are like that, but that was not Mia.
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If elected PM, Tony Abbott told the National Press Club the other day, “I will spend at least a week every year in a remote indigenous community, because if these places are good enough for Australians to live in, they should be good enough for a PM and senior officials to stay in”.
What intrigues me about this pledge is the contrast it poses with Tony Abbott’s reaction when I invited him last year to spend just one day out of his entire life with an Australian with severe disabilities.
Last May, with both major political parties then beginning to consider their responses to the Productivity Commission’s call for a National Disability Insurance Scheme, it seemed to me – both as a journalist and the mother of a son with severe disabilities – that it would be helpful for various key federal decision-makers to actually spend some face time with a severely disabled Australian.
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How would you feel if you found out that your mere existence is such a burden on your parents they want $10 million compensation?
It’s not clear whether 11-year-old Keeden, who has severe brain damage after a rare genetic condition caused a massive stroke, will ever understand what his parents are doing.
Debbie and Lawrence Waller are suing their IVF specialist for “wrongful birth”, claiming he breached his duty of care by failing to take proper care that Lawrence’s genetic blood clotting condition would not be passed on. They say they love Keeden, but wouldn’t have gone ahead with the birth if they’d known because of his suffering.
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Imagine if there was a minority group in society that was less likely to finish school, less likely to get a job, was paid less on average, and faced a level of unthinking prejudice that meant they were not even able to enter some shops and public buildings.
That minority exists. They are the 800,000 Australians under 65 with a physical or intellectual disability. The lives they lead are shaped by both the misunderstandings of the general community, and the chronic lack of services and support they face.
Things are better than they were, we’ve moved away from the days of institutionalisation and there are now more options for people with disability.
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This week The Punch features two Angry Cripples, both anonymous. It’s fair to say they have somewhat opposing points of view to say the least. We recommend reading this one first.
I am an angry cripple. No, I do not have a disability, but as the mother of a young woman with severe and multiple disabilities, I am as crippled by the cruel Australian disability support system as much as – and sometimes more than - many people with a disability themselves.
I have been the sole primary carer of my daughter since my divorce more than 20 years ago, with the result that - like hundreds of thousands of other sole primary carers - I subsist on the poverty line.
During the global financial crisis, when the government was throwing cash at families earning up to $110,000 a year and the widescreen TVs and handbags were rolling out shop doors, I looked at my life, my old and decrepit furniture, my second hand clothes and all the things about my health and life that desperately need work but which I have not been able to attend to because of lack of support services and/or my inability to pay.
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This week’s Angry Cripple column is from a contributor who is ‘mired in the disability muck’.
Last week, I went to enrol my nearly five year old girl into school.
There’s only one state school in my town, and the private boarding school, at $30K/annum is well beyond my budget, so Tamthiliya State School it has to be. The website looked great, and the vision statement said it all “Respect, Tolerance and Learning”. All in all, I was looking forward to her starting at Tamthiliya Primary. I’ve always assumed that schoolkids were well taken care of here, but I guess I was misinformed.
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Ray Silburn’s fall didn’t look good, and it wasn’t. Dislodged from his mount at a small-time meeting at Canberra’s unimaginatively named “Thoroughbred Park” racecourse in February, 2005, the champion local jockey was left a quadriplegic after being crushed by the weight of his 500 kilo quadruped.
“One minute I was in a race, the next I was looking up at a ceiling,” the jockey said at the annual National Jockeys Trust Lunch on Thursday, which The Punch attended. “I just wanted to move my arms so I could hug my two kids.”
Silburn’s wife left him shortly after the fall. “I experienced deep loneliness. It was very hard. I put on a brave face but deep down I was in a lot of pain and hurt. There are things you just don’t understand with the way your life has turned out and how some people treat you.”
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Welcome to The Angry Cripple. Not very PC, is it?
As a person with a deep and personal interest in disability issues, I’m remaining anonymous so I can post not only my opinions, leaked documents and stuff that might otherwise get me in trouble, but also the opinions of other people with an interest. There will be guest columns by famous Australians, as well as ones written by my neighbours.
But mostly, the columns will feature me writing about things that make me angry, and why I reckon they should make you angry, too.
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