Like what you've read?

On Line Opinion is the only Australian site where you get all sides of the story. We don't
charge, but we need your support. Here�s how you can help.

  • Advertise

    We have a monthly audience of 70,000 and advertising packages from $200 a month.

  • Volunteer

    We always need commissioning editors and sub-editors.

  • Contribute

    Got something to say? Submit an essay.


 The National Forum   Donate   Your Account   On Line Opinion   Forum   Blogs   Polling   About   
On Line Opinion logo ON LINE OPINION - Australia's e-journal of social and political debate

Subscribe!
Subscribe





On Line Opinion is a not-for-profit publication and relies on the generosity of its sponsors, editors and contributors. If you would like to help, contact us.
___________

Syndicate
RSS/XML


RSS 2.0

Wasting expertise and wasting lives

By Peter Gibilisco - posted Wednesday, 28 February 2007


My disability, Friedreich’s Ataxia, has over time severely changed my ability to participate in “my life”.

The disease currently leaves me with indecipherable slurred speech, severe mobility restrictions (wheelchair bound since age 23 and suffering from profoundly unco-ordinated movements - an example of this is a very slow typing speed of about three words a minute) and a range of deformities, only one of which is classified as severely disabling.

For example, a scoliosis (twisted spine or “hunch back”) was operated on in 1986 to stop the speed of deterioration, but this in turn created new problems: my spine from the top of my neck to the bottom of my tail bone is supported by stainless steel rods, making it inflexible - it can’t bend. But it was either have the operation or die because my spine was bending rapidly and would have caused my heart to get squashed.

Advertisement

I also have a cardio-myopathy (a profoundly deformed heart) and nystagmus (weakness in the muscles behind the eyes causing them too constantly shake), and many other medical deformities directly related to Friedreich’s Ataxia.

In spite of this, for most of my adult life, I have lived independently in Dandenong. I am now 45. And during this time I believe I have acted as role model for many people with severe physical disabilities. I have been studying at a post-secondary level since the age of 23. I completed an Associate Diploma in Business Studies (Accounting) at the age of 27. After this I attended Monash University for ten years and was awarded a Bachelor of Arts, a Bachelor of Business (Accounting), and a Master of Arts. My last academic association was with the University of Melbourne, where I completed my PhD in December 2005.

By doing and achieving all this, I feel I am certainly fulfilling my obligation to contribute to society.

During this time I have always tried to play a good hand with the cards life has dealt me. The disease has significantly progressed since I first started living on my own in 1989, especially during the last five years when I was studying for my PhD.

But now that I have my PhD I have harder yards to accomplish: that is to participate in the disability sector as a person with a PhD. I have much personal experience of public policy as it pertains to those with severe physical disabilities that could assist in shaping future directions of public policy. However my attempts to participate have been restrained by the Department of Human Services (DHS).

The DHS have found yet again, in their wisdom, to refuse me the necessary personal care hours I need to capitalise on my PhD within the disability sector and also to help slow down my medical deterioration. This further throws into question the stated claims of the State Disability Plan to provide for human rights, dignity and self-determination, when individuals are denied access to necessary personal care that would improve their quality of life.

Advertisement

In previous years, I was granted a sufficient number of hours of personal care to keep my head above water, even allowing for deterioration in my condition. But at that time all I required to fulfill my initial needs was to maintain the ability to be an exceptional student (mostly working on the computer for eight hours a day).

Now I have finished my degree, however, and this along with my physical deterioration has dramatically changed my personal care needs.

For example, this was Support and Choices response to what I considered a reasonable request for additional personal care hours:

  1. Pages:
  2. Page 1
  3. 2
  4. All


Discuss in our Forums

See what other readers are saying about this article!

Click here to read & post comments.

4 posts so far.

Share this:
reddit this reddit thisbookmark with del.icio.us Del.icio.usdigg thisseed newsvineSeed NewsvineStumbleUpon StumbleUponsubmit to propellerkwoff it

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.

Other articles by this Author

All articles by Peter Gibilisco

Creative Commons LicenseThis work is licensed under a Creative Commons License.

Photo of Peter Gibilisco
Article Tools
Comment 4 comments
Print Printable version
Subscribe Subscribe
Email Email a friend
Advertisement

About Us Search Discuss Feedback Legals Privacy