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Itches and scratches - living with disability

By Peter Gibilisco - posted Wednesday, 19 March 2008


It is probable that everyone will get an itch somewhere, sooner or later. And so, when you get an itch, you do what comes naturally: you scratch it! It is a simple process that itches are made to feel better when scratched. Or so it seems.

But what if you can't scratch? I mean, what if you can't scratch where it itches because you have nothing to scratch it with? It may be an itch that is underneath your plaster cast that is in place to help with the healing of your broken knee-cap. What if the itch can't be localised? What then? It is not such a simple problem.

I happen to know a lot about the problem of scratching itches from a rather unique perspective How? Because I have a neuro-transmitter dysfunction that simply won't allow me to reach wherever it itches. So I have learned to cope, to block out the irritation. I have to admit that it is, indeed, a luxury when I am fortunate enough to have a very empathetic support worker who can help me by scratching my back or my ear, but I won't bore you with all the details of my relief because I have only raised this with another purpose in mind, a purpose I might add which might help our society understand the itches people like myself have to deal with.

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I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich's Ataxia. I've been attacked by this progressive disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need for empathetic behaviour from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You'd have to say that my life, with the progression of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched!

Yes, we need ramps and railings that lead into public buildings. But, there needs to be something more. Let me tell you that I have received much, for which I am very grateful. And have come such a long way with so many people to thank. I often wonder, how can someone like me have got this far? And with a disease that has made a greater impact over my body as time passes.

I am now 45 and my care needs increase almost by the day. Yet despite this I have just completed a study tour in Hawaii visiting the University of Hawaii, Center for Disability Studies. My social enquiry in the US focused on how many people with severe disabilities yearn for, and are capable of performing, most human activities - with assistance from a support worker.

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I was diagnosed with Friedreich’s Ataxia at 14 and then my mother died of cancer when I was 18. I was well and truly on a downward emotional and physiological spiral. By 23, I was confined permanently to a wheelchair. But it was also around this time, with the encouragement and perceptive advice from a close lady friend which lifted me out of a fantasy land of self-pity, that I began studying for an Associate Diploma in Accountancy at Dandenong TAFE. That inclusive and happy learning environment gave me inspiration to tackle life with vigour and it still serves as a reminder to me when, like anyone else, I develop the usual emotional itches which need scratching. That was my 1984.

But that year, 1984, reminds us of something else doesn't it? Since then, my life has been not unlike the problematic world that George Orwell describes. It is especially relevant to people like myself who are really very grateful for all the special consideration, no matter how insignificant, equal opportunities and affirmative action we have received over the years.

But why is it problematic? It is problematic in an Orwellian sense because we know that if we raise a voice in criticism, even if we are trying to be constructive, we put ourselves in an exposed situation. After having traveled so far, with so much kind assistance, it can too easily sound like we can never be satisfied and can never get enough freebies.

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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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