Did I Deserve 7 Years of This Imprisonment?

The below is written to give an acknowledgement to professor Martin Delatycki and doctor Louis Corben for their expertise in the medical conclusions of Friedreich Ataxia.

“Dr Peter Gibilisco was diagnosed with Friedreich ataxia at the age of 14 years. He is now 55 years old.  Friedreich ataxia is a rare, progressive neurological condition. The main symptoms of the condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking and significant heart involvement. The affected person eventually loses their capacity to walk and becomes dependent on a wheelchair for mobility. In addition they increasingly require assistance with most personal care tasks as the disease progresses. To date there is no known cure for this life-shortening, devastatingly progressive and debilitating condition. Continue reading “Did I Deserve 7 Years of This Imprisonment?”

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Monash Human Library and New Book

Last week, on March 29, I was a keynote speaker at the Monash Human Library which was held in the Peninsular campus. This was conducted to an audience of about 100 OTs – both students and professionals. My keynote speech explored the individualistic pursuits of Friedreich’s Ataxia which can be summarised as follows: Continue reading “Monash Human Library and New Book”

Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia

 Introduction:

I want to discuss a disorder that afflicts me. Friedreich’s Ataxia (FA) will eventually leave the person afflicted with severe socioeconomic and medical restrictions. And because of this many people with FA are constantly subjected to stereotypes, as losers. We are unfairly harassed, and our abnormal features and functions as a result of the disability doesn’t make our life any easier. Believe me. My experience is that many people – it doesn’t matter what walk of life – believe they know best for an FA suffered and will then apply the stereotype to tell them what they can and can’t do.

Does this sound fair to you? Continue reading “Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia”

‘Customers’ Living in Shared Supported Accommodation

Yooralla likes to standardise all residents as customers.

Continue reading “‘Customers’ Living in Shared Supported Accommodation”

Another Hurdle I Must Get Over

Mutual obligation was a political buzz-word during Prime Minister Howard’s leadership from 1996-2007. Let me be frank, when we are talking about mutual obligation, the political definition of the term describes it as such: ‘Mutual Obligation is based on a concept that welfare assistance provided, should involve some return responsibilities for the recipient’. Continue reading “Another Hurdle I Must Get Over”

How is the peak body for people with disabilities to be funded?

Today I received an email, part of which is copied below:

PDA needs your help!

Last year the Department of Social Services (DSS) decided to fund only population based organisations to provide consultation and advocacy services. This meant organisations like PDA that have memberships based on types of disability received no money to represent you and your specific needs in government consultation processes and disability sector forums.

This year, there is even less money available!

Without a boost to the funding available to disability representative organisations, PDA and its partners in the Disability Australia National Peaks Consortium are likely to go out of business.

Continue reading “How is the peak body for people with disabilities to be funded?”