My ‘Design for All’ Guest Editorship

It is such a joy for me to be asked to be the guest editor for Design for All, and I have invited a handful of incredible people to share their perspectives. First, my good friend Steffan Irugalbandara brings to the fore his beliefs concerning failure and the positive steps that may become issues from it.
Currently, I have many close friends who have migrated from Sri Lanka. This brings me to an article that I coauthored where we talk about my friendships, Sri Lanka’s devastating effects upon that country from the civil war and the tsunami which still has a profound effect upon the friends who have encouraged me in this article. That being said by way of introduction, we then look more broadly at Sri Lanka and people with severe disabilities.
Next is a book review from a dear and close friend of mine, Bruce Wearne. Bruce was there throughout every stage of this book and whenever I was in a situation where I was in need of help he was always there, a great friend. Bruce also follows with a brief writing on the social aspects of Friedreich’s Ataxia.
Next my good friends from the Friedreich Ataxia Clinic share their expertise in their respective fields pertaining to the care of Friedreich’s Ataxia. Professor Adam Vogel writes on the complexities of Friedreich’s Ataxia and speech therapy. Associate Professor Louise Corben highlights the strains on mobility that Friedreich’s Ataxia patients endure, and how they can be overcome with suitable, individualised disability equipment. Finally Professor Martin Delatycki gives background on Friedreich’s Ataxia for anyone who wishes to learn about the disability.

And finally, is my book’s abstract which basically runs along the lines of the dangers of organized care becoming careless.

Read it here: Design for All

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NEW BOOK: Six And A Half Years On A Dunghill

Preface

 

This 6 ½ years (July 2011 – February 2018) in shared supported accommodation, has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see; and of course the power of irritation towards the delivery of life circumstances pertaining to the disability sector. This bureaucratic mess is subsequent to a lack of true empathy, which may conflict with any budget bottom line, thus enforcing the creation of social dilemmas which then draws attention away from the original problem. This is something that can also be performed by non-government authorities, as is seen in my own circumstance.

My new book

6 and ½ years on a dung-hill; life in Specialist Disability Accommodation

In this book I propose to include edited versions of posts I have made to On Line Opinion (OLO) (www.onlineopinion.com.au), John Menadue, ProBono, The Conversation, DesignForAll, and my personal blog.

My aim in this book is to affirm vital principles that need to be better understood and implemented if the National Disability Insurance Scheme (NDIS) is going to be of benefit and fulfil its mandate; so that care doesn’t become careless.

My need for invidualised support

My concern is serious. It is about Yooralla’s dismissal of my need for individualised care. I am a 56-year-old male with a double degree, a Master of Arts and a PhD from Melbourne University. So why am I still treated as, for lack of a better term, an idiot? This is especially evident from the way Yooralla treats me. It does not take me and the form of care that I need into consideration.

I got access to the NDIS!

Good news! I am finally able to transition into the NDIS! With a plan that is specifically tailored to my needs, I will finally be able to experience some choice and control in my life.

It has been a long and strenuous journey to reach this outcome, and I have only been honest in all accounts; and in the midst of still attempting to defy the one size fits all policy approach to individual disabilities that prevails in this shared support accommodation facility. Standardising in this field will create the improper pursuit of human rights and result in chaos, something I have experienced a lot of in my daily life here.

My NDIS plan covers a lot of areas that my ISP did not, such as assistive technology, transport, home modifications, and other core supports. I would like to especially thank Daniel Rose from DHHS, for highlighting my situation and needs to relevant parties and finding new avenues to help me, by drawing my attention to alternate living arrangements. This is a tremendous weight off my chest, as I will now be able to focus on the things that truly matter to me.

This was all done with the help of my brilliant and lovely academic support worker, Christina Irugalbandara.

I Respond to the Minister of Social Services

Before I begin, I want to point out that my support provider was witness to a document I signed, regarding  DHHS and my personal information. Any information about me should be not be disclosed to any parties, except on my approval.

Here is a letter I received in response to a blog post I had made on 8 April, which was posed as an open letter to the NDIS. In the blog post, I talked about my urgent need to get out of my current living situation.

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.