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)

The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy

August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—

“Scoliosis

Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.

Heart disease

Around three-quarters of people with Friedreich’s ataxia will develop some form of heart disease, usually hypertrophic cardiomyopathy which is when the heart muscle becomes thickened.”

Job on a Dunghill

My time 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. The loss of my control and dignity manifests as motivation to change the delivery of care in the disability sector.

Poster: 6 and a 1/2 Years on a Dunghill

Here is the poster my team and I have created for 6 and a 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. I believe the book contributes immensely to the current debate surrounding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Pushing on for Justice: A Book Review

This review is from two of my most intellectually admirable and honourable friends, Christina Irugalbandara and Bruce Wearne.

A possible submission to the Royal Commission

In light of the implementation of a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, I wish to shed light on the issues faced by individuals in shared supported accommodation facilities. In particular, it is important to note the standardising of support which, over time, ultimately leads to dangerous outcomes for residents. My experience in living in a shared home for the past eight years is testament to this, and I have written about it extensively in my latest book. The following are relevant excerpts from my book, rewritten under the context under the Royal Commission.

#RoyalCommissionNOW

In my book 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation, I have so eloquently expressed the need for 4 key elements in the disability sector: passion, empathy, altruism, and pragmatism. This is very clearly on display by Senator Jordon Steele-John in his speech linked below. I highly encourage everyone to take some time to watch this emotional, awe-inspiring speech.

Senator Jordon Steele-John also adds the following to his video:

I gave this speech last year in dedication to those members of my community who lost their lives due to violence, abuse and neglect.

Their voices remind us why we are fighting for justice. In their names we go forward.

#RoyalCommissionNOW

 

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

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.