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Where is the dignity in ‘My future, my choice?’

By Peter Gibilisco - posted Tuesday, 12 March 2013


Recently, on a Friday night I received confirmation that my new DSR was approved. This proved to be a lifesaving matter in so many ways.

Just consider: one day, at around 8pm the staff came to my room to deliver mail and they found me half out of my chair lying on the floor. I had fallen into that position an hour earlier. It left me in a position where it was impossible to reach the buzzer and here I was vomiting and yelling for one hour. I had just finished dinner.

In other words: I know very well what care I need. I am all too aware of the vulnerability of my situation. I just hope my new DSR level can now ensure a better level of safety.

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Recently, at about 2.00a.m in the morning, I was in a very uncomfortable sleeping position in bed, and I called by buzzer. No one turned up. I heard the next morning, that those on duty could not find my room key to come and assist me. Later that day, my father came to visit and straightaway he looked at me and asked if I was okay. He could see I was not. Then, of course, I ask him the same question. It was strange of him to turn up so suddenly. Then he told me that he received a call from the staff the previous night, informing him of the situation, mentioning that they will call him back if they are unable to access my room. But since he received no further calls, he got worried and came to visit me. This was very irresponsible especially when they had already contacted him, a 75 year old, at 2am in the morning! And anyway why had the casual staff not been properly informed about the location of the keys.

As I said: I know what I am talking about. Things have got to change. A new attitude is needed to face the reality of caring for those with disability. I hope this straight from the shoulder piece can help those who should be thinking about these matters.

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Peter Gibilisco would like to acknowledge the assistance of Bruce Wearne in producing this article.



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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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