This year, I turned 57 years old. As an individual with Friedreich’s Ataxia, I have been severely impacted by the limitations it places on my physical capabilities. The most notable and devastating damage has been done to my ability to communicate. For example, today I find it impossible to use my keyboard. The only way I can use my keyboard at all is with the help of specific academic support workers, who with training and experience, have learned to understand most of my speech. Even so, my speech dysarthria still hinders my ability to communicate with my support workers, and to dictate what I need to say in my academic or everyday writings. Continue reading “THE NEED FOR HUMAN INTERACTION”
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.
By Peter Gibilisco and Christina Irugalbandara
“Nothing About Us Without Us!” (Latin: “Nihil de nobis, sine nobis”) is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy. (Wikipedia)
What I aim in this piece is to explore the process of marginalization that excludes people from political, social, and economic opportunities. Of course, there are many forms of exclusion but my focus is upon the marginalization of those with disability, or at least a grotesque example of this.
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.
I was medically diagnosed with Friedreich’s Ataxia at the age of 14. I am now a 57 year old man, and I have made it part of my life’s mission to look at ways in which the progression of Friedreich’s Ataxia can be slowed down. I am a pragmatic thinker, and as such, I look at every aspect of my disability.
For this blog post, I will talk about something that is not often talked about. Something that many, including myself, find difficult to talk about for various reasons. It is unpleasant, embarrassing, but necessary to have this discussion. Continue reading “Independent strategies for urinating and toilet routines in relation to Friedreich’s Ataxia.”
Senator Jordon Steele-John will be joining the Q&A panel on Monday the 9th of September. He is a senator for WA, and he is a very smart man with a lot of personal knowledge. Please tune in and participate if you can. I believe he will be inspiring.
My book, Six and a Half Years on a Dunghill: Life in Specialist Disability Accommodation, has been reviewed by Frank Stilwell. He is an emeritus professor, and the review has been published on the latest edition of The Journal of Australian Political Economy. Continue reading “Book Review”
On Sunday, I made an official submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. I feel that my submission is one that needed to be made, as I have suffered from systematic neglect and exploitation for almost 8 years. The following is my submission, which I have reworked for this blog post. Continue reading “Submission to the Disability Royal Commission.”
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.
About a year ago, I was granted access to the National Disability Insurance Scheme (NDIS). The plan I had worked on with several dedicated individuals aimed to be specifically tailored to my particular needs, and for the first time in a long time, I was finally able to experience and feel that I had some choice and control in my life. My NDIS plan covered a lot of areas that my Individual Support Package (ISP) did not, and made provision for assistive technology, transport, home modifications, with an envisaged array of support in other matters as well. In particular, the NDIS has given me greater choice and control through allowing me to be the primary manager of my funds. This way, I get to decide which support workers I hire to take on important roles such as academic support, social assistance and other flexible arrangements. Continue reading “A SIL-ly Situation”