- Published: Monday, 17 July 2017 12:24
Nine years ago, I lost a beloved son who had significant disability encompassing autism and cerebral palsy.
Today, listening to the ongoing debate about whether students with disability should be included in mainstream classes, and recent stories about the horrific treatment of students with disability in Australian schools, I can only reflect sadly that Australia still has a very long way to evolve before we see respect, inclusion and acceptance as the norm for our sons and daughters.
When will they be allowed to live valued lives, embedded in the fabric of their community, with the support they so rightly deserve? How long must we keep fighting for their basic human rights?
Despite the significant gains made in disability rights and legislation, the struggle against ignorance continues.
We have all listened to TV, radio and press debate in recent times suggesting that students with disability, like my son, need to be removed from our classrooms because they hold the other students back. There are ‘special’ schools for them and that’s where they belong.
Now, on the ninth anniversary of his death, I am reminded of the long battle our family had to get our son, Joel (who had extremely high support needs), into a regular classroom setting where he could have an education commensurate with his abilities.
He was one of those ‘difficult’ kids. A kid who rebelled against the situation he found himself in. So, he spent quite a bit of time in ‘isolation’ receiving ‘therapy’ a.k.a. punishment. Unbeknownst to us at the time, he would be strapped, sobbing, into a rigid standing frame for hours on end, only to wet himself and be transferred to a small caged area, where he was left to howl alone.
Then… they were all put in isolation: the kids came back after a holiday break to find that their ‘special unit’ had been segregated from the rest of the school by a black-painted iron-bar fence two metres high. We pulled him out of school. We were threatened by the authorities.
I remember sitting on the phone for hours and days on end, relentlessly calling schools within a radius of 800 kms from our Central Coast home. Shockingly, no mainstream school would accept Joel as a student. He was, the then Department of Education said, ‘too disabled’ to be included in a regular mainstream class.
We lodged a complaint with the Disability Discrimination Commission and kept looking for a school.
The only place where Joel was potentially welcome was Nimbin Central School, on the NSW North Coast. We had no idea back then where Nimbin was – only that we were going there, no matter what.
But even that seeming miracle challenged our family’s self-worth. I was invited to a special staff meeting to plead my case for Joel’s enrolment. The teachers then retired to take a vote. The Principal, Alex Benham, used his casting vote to support the enrolment. I remember he had a pink rose quartz crystal on his office desk. It became my favourite gemstone.
In time, with amazing support from Gillian Smith, a visionary Department of Education disability support consultant, Joel thrived at school, astonishing staff and students alike.
In Year 7, his first year at the school, music teacher Myra Virtue asked the class to name some famous composers. Two students managed to name one composer each. Anyone else? Any composer will do! There was silence.
Joel put up his shaky hand. He was still the new boy, the ‘disabled kid’ who talked funny and couldn’t walk. There was snickering. Twenty minutes later the bell had rung and Joel was still going strong, having named more than 50 composers! The teacher was filling the board with names … the class stayed in. Unheard of. They cheered him on. He was a legend after that.
In his final year, Year 12, Joel triumphantly shared the award as the school’s most outstanding student. He had a huge number of deeply connected and caring friends, who gave him a standing ovation… and partied on into the night with him. Years later, these were the same wonderful friends who visited frequently as he struggled with terminal cancer.
What is important to put on record, is that Joel received full-time teacher aide support for his six years of high school. It paid massive dividends. Individualised support is crucial to successful inclusion – for the student, for the teacher, and for the class.
Later, again with a great deal of individualised support, Joel went on to study art and drama at TAFE, and writing at Southern Cross University.
He became an in-demand speaker, sharing his compelling personal journey and advocating for a fair go for people with disability. The Institute for Family Advocacy and Leadership Development made a film about him.
In 2007, against all odds, he was the inaugural Australian Government National Disability Awards personal achievement prize winner.
Now, if backward-thinking people had their way, students like Joel would spend their education years in little concentration camps behind bars, in ‘special’ units that are under-staffed and under-resourced, out of sight and out of mind.
They would be denied the chance to realise their full potential, to develop lasting, freely-given friendships, and to make meaningful contributions to society.
New generations of so-called ‘normal’ kids would grow up in absolute ignorance – intolerant of difference, fearful, and unsure of how to relate to a person with disability. They might reach adulthood as uninformed, bigoted, individuals – like some of our politicians. As organisational leaders and decision-makers, they would continue to carry their prejudice and fear with them.
People with disability deserve so much more from us than this. We need to speak up wherever and whenever we see discrimination against them and stand with them, shoulder-to-shoulder, as allies and advocates.