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Itches and scratches - living with disability

By Peter Gibilisco - posted Wednesday, 19 March 2008


In this respect I would suggest that affirmative action needs to be taken to a new level. And perhaps this new level cannot be reached without recognising the ongoing obligation which a degree-granting institution has to its graduates. Understanding mutual obligation from the institution to its highly qualified graduates is downplayed if not lost entirely.

In my own case, a university which takes a qualified post-graduate student with Friedrich's Ataxia into its PhD programs, should not view itself as giving a sympathetic expression according to the medical model's agenda, which has the unfortunate ability of systematising disability policy pursuits. Although that is, I am sorry to say, the predominant way in which Australian higher education under third way and neo-liberal policies tends to view such achievements.

That's the itch I have wanted to scratch. We need universities that will recognise that their institutional mutual obligation is not transacted merely by granting degrees and then every year thereafter sending out brochures inviting its highly qualified alumni to give generously to the university's noble cause.

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In my case I am forced to ask: How is it that the university has not required me to give back by post-doctoral research and to be part of its ongoing research effort? How is it that it can take on a candidate without expecting to maintain its responsibility to provide ongoing support after graduation, and also, in order that its own research work is enhanced by my contribution?

Note, my point is not to ask that my work be judged before I do it. I am referring here to the lack of effort or empathy that seems to come from the side of those administrating higher education institutions in Australia.

Writing On Line Opinion pieces, or developing my own Blogspot, are indeed satisfying experiences and I would not want them to be taken away. But such personal satisfaction at getting a paper published is not the main game. What I am concerned about is the development of genuine policy for the severely disabled, and in particular, policies that will seek to meet needs that arise from progressive disability.

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Thanks to my friend Bruce Wearne for help with the composition of this. This article was developed from a paper presented at the Disability Professionals 2008 Conference.



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About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.

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