MY LIFE WITH FRIEDREICH’S ATAXIA – SOME AUTOBIOGRAPHICAL REFLECTIONS

I can still remember some events quite well of my early life when I was seven. For example, let me tell you about trying to ride a bicycle. It took me a while and took me some time before I got to master it. It was no easy feat. Also, at 7 years old I entered a new primary school and there in the playground was a balance beam. This gave me an early lesson in the difficulties I would confront later when Friedreich’s Ataxia took hold. But I’ve always been very determined to live life to its fullest.

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How Low Can ScoMo Go?

This is an older article, but I feel its message is a very important one that shouldn’t be swept under the rug. So I am reposting this article on my blog. 

The Government is taking money from society’s most impoverished and vulnerable group of people. How low can ScoMo go? This is not something we should be keeping quiet about.

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Something to Inspire You

It has been eight and a half years since I moved into the shared support accommodation facility where I now reside. For socially conservative reasons, pertaining to cost-benefit analysis, there has been a significant, tangible and intangible failure of choice and control. For the past eight and a half years, continuously undergoing the strains of living in this group home has had a detrimental effect on me — as I have written about in previous works.

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Another burden on my communication

Under the current disability support system that I am a part of, my support provider receives a sum of money from the NDIS, known as the ‘SIL’ (Supported Independent Living). They may have been allocated quite a large amount of money, but as I experience it they treat me in a very flippant manner.

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A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE

In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all?  Continue reading “A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE”

Another possible submission to the Royal Commission

NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G) Continue reading “Another possible submission to the Royal Commission”