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Standardising disability

By Peter Gibilisco - posted Friday, 5 April 2013

In this article I take an auto-biographical approach. It follows on from my account of previous dramas. I'm sorry to report incidents that have caused me immense pain, with physiological and psychological suffering that is unbearable and borders on torture.

Of course, it is easier for those providing services to standardise disability. The Manager must remain in control, although standardising the way in which services are delivered causes serious difficulties for those who are cared for and also for carers. A person's real-life situation needs to be taken into account.

Having a disability does not necessarily mean that you are mentally impaired. Service providers of not-for-profit services seem to want to standardise disability to make it more amenable to organisational processes that can then distribute work tasks according to an economically-oriented calculus.


Let me provide an example from my real-life experience that occurred on Tuesday evening the 19thof March 2013. This is an account of another incident when, once more, I fell out of my wheelchair.

It was just after dinner. I need to empty my bladder, and as usual, my carers set me up in the appropriate way. But in so doing I slumped out of my chair, falling to its side. After waiting five minutes for the staff member to return, I decided to try to make myself a little more comfortable by moving a bit. But that movement had the opposite effect - my bodily involuntarily flung me forward and ... crack. My hip was broken.

The staff-member arrived 30 seconds after this happened and I was in great pain and I finally conveyed to them that they should ring for an Ambulance to take me to the hospital.

I repeatedly requested that I be taken to a private hospital as I had Private Medical Insurance Cover. But due to my slurred speech and being in a lot of pain, they had very little chance of understanding what I was trying to say.

They brought me to the Dandenong Hospital where I was X-Rayed and so my broken hip was discovered. They gave me pain relief and so I felt more comfortable for an operation the next morning.

The operation was successful. But my major problem with what was administered concerns the drugs: I was put on an 8-hourly regime of two tablets of Valium and one of Endone. And I have a history of hallucinating when such high medicinal dosage. My issue, at this point, is that I was not properly told the dosage of these medicines.

My hallucinations were very severe and were of incidents in which, as with terrorist attacks, I imagined my life was under threat. Please try to put yourself in such a situation before you laugh at me. It sounds ridiculous but was extremely difficult for me to get over the emotional turmoil that was created by these terrifying hallucinations.

My real need is to exit this place where I have no control over my own life. The people making decisions for me are repeatedly making standardised decisions that leave out the most important factor: more true needs. This has been a recurrent aspect of the last few months that I've lived here, and the troubles I have had to confront.

It has become so difficult for me to express myself and to get my needs identified. Writing as I am doing now is my only way of communication for these issues. Due to my disability I am not in a position to freely communicate even on paper. If the support worker is not used to my speech then they have to wait as I reply to their question with my typing speed that sometimes can't go faster than 1 word a minute. This is why I require a primary carer with 24 hour care. If incidents similar to those I have recounted occur, the carer would know my preferences and my medical history and would be aware of what I truly need. For example, s/he would direct me to a private hospital since s/he will know of my private medical insurance cover, and would also oversee the medication that is given to me.

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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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