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EIGHT AND A HALF YEARS ON A DUNGHILL

Readers might assume that this title is the introduction to a humorous piece but believe me what I am writing about is no joke. The “dunghill” I write about is the “provider” of the facility in which I live. I am provoked to write in this angry tone because of the strong impression I receive in the responses from “those above”, those in charge of my residence, are excessively calculated, constrained by a mentality in which a cost benefit analysis has precedence. To treat people through a sieve of costs and benefits is something I have come to hate.

Do I blow my own trumpet of academic success? It is as if my pursuits as a social justice advocate is simply ignored. And so, with this sense of being “merely tolerated” for my qualifications and publications (which give me a great sense of fulfillment), I find my life is constrained by the stupidity of management practices that leave me standardised. I sometimes have to ask: how is it that a person with my proven academic capabilities and ongoing advocacy be subjected to a regime of standardisation in which the term “disability” is used without discerning the basic differences between the people involved?

I am sure once the word gets out to management that denials will come thick and fast. But there is a significant question here that needs to be addressed, and it is, as a matter of fact, a question about which I have “academic” competence. There is a need to actually take this question to the qualified person in social science, economics and sociology, who also has disabilities (just as I do), and get their view of this management issue about the social relations that should be taking place in a facility like my own. Who will deny that it is such a qualified person who is, in actual fact, in the best situation to provide an insightful answer.

But do I have to blow my own trumpet? I can only say that when I have received the question, or similar to it, from a support worker seeking to deal with this complexity from his/her side of it, that I have been able to encourage such workers to undertake a meaningful quest into how such support work should be structured. This is a significant form of amelioration for me in this environment, in this facility, and such interaction is very fulfilling, not just for me, but for my support worker(s) and in repeated cases, lifting our relationship to a new level of heightened care for each other, allow the support worker to engage empathetically with me and me with the support worker doing so too.

EMPATHY

It is probable that in such situations such empathy provides more than a simple solution to an immediate problem. In today’s changing environment, there is a greater need for empathetic solutions especially in disability care. Disability care today needs to be administered with an individual focus, much like person-centered planning, which is to look at the disability from the individual person’s point of view and place in his or her network of relationships. When we consider human interactions involved with disability, it is possible that most of the actions will be individualised by reference to the person concerned, and therefore it becomes highly problematic when we try to fit disability care into some kind of systematic regime.

The following is taken from the article ‘The standardisation of services for people with disabilities’. in John Menadue’s site, Pearls and Irritations: https://johnmenadue.com/peter-gibilisco-the-standardisation-of-services-for-people-with-disabilities/

ACE DISABILITY SERVICES – We are here to give independent and fulfilling lives to people with physical, intellectual and multiple disabilities. Lovely slogan isn’t it? But then reflect upon the efficiencies that are required in shared supported accommodation like my own. And now look carefully at that phrase: people with physical, intellectual and multiple disabilities. I am not criticising the ethical intention; I am trying to draw attention to the inner organisational chaos that will result for workers and residents if a facility conflates physical and intellectual disabilities. And who can tell how care for those with ‘multiple disabilities can emerge in the midst of such organizational blurring?

However, this is only one form of many different forms of standardisation, and it can be an evil that is enhanced further by making disability-care into a profit-making exercise.

DISABILITY SUPPORT WORKERS

It is so hard for me to express my feelings but this is something I believe I need to do. However, my thoughts are individual but can be related effectively to many different situations. My progressive disability has allowed me to try out most of the things I have thought might be fulfilling. But my needs change with my disability; for example, early in my life when I was about thirteen, I had the desire to try out waterskiing and at thirteen I was also into driving trail bikes. I succeeded in some ways but it is very fulfilling now to look back on the way that I tried to achieve. But I am sure there are many things that I never tried because I had an idea of my capabilities and did not wish to make myself look utterly ridiculous. All of my pursuits hitherto help me to gain an empathetic idea of what is needed in the structuring of the “situation” that support workers confront when they meet up with me.

Many, just like me will need their own form of individualised care. Most disabilities arise with the need for that are not systematised or automatic just like many of my life’s pursuits have been driven by distinctive actions that I have either had to learn or with which others have had to help me.

My life is so independent and varied because I have always wanted to achieve. I have tried many things with a lot of disastrous memories! But since reaching 28 years of age, when I started to tone down a lot and live on my own with the aid of support workers, it meant putting all my effort into attaining an education.

I believe these were my most successful years, when I look back at it now I had failed to reckon with the maintenance of an adequate form of support worker structure. My disease was progressing in a severe way during this time and I did not have structures in place to fulfill any inadequacies. Besides, was I really facing up to them? Maybe not always. But during this time I began to develop fantastic friendships with my taxi drivers and some of my teachers at university; they were also able to show me that life had its good points.

The disease eventually progressed far beyond support worker structure. I really do not know what state governments were thinking as I was given $69,000 in 2011 to cover all my care. Do they think I am so much of a genius to get money from nowhere to pay for needed support? The following is posted in 2016 in John Menadue’s blog:

I look back on the last eight and a half years and come to a sad conclusion. For some considerable time, I have been losing control of my movements. But from July 2011 there has occurred a progressive loss of control that is potentially more fundamental than the biological loss of muscular power. It has not been physiological so much as social and personal. What am I referring to? July 2011, eight and a half years ago, I moved into a group-home for people with high support needs.

The move came about after being encouraged by various people to enter this group home. This happened because the Department of Human Services, as it was then known, could not allocate an extra 3 hours per day that were necessary for me to work safely and productively during the day in my own residence.

At no stage was the kind of loss of control that I have subsequently experienced – in a personal and social sense – brought to my attention by those who were encouraging me to make this decision, not least those in charge of the facility in which I have subsequently found myself. The “movers and the shakers” in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained.

This piece characterises my attempt to interpret the ill-fated steps that have been part of my life. My conclusion is that disability-care must involve great care in structuring support that is indivualised and gives due respect to the person being cared for. My suspicion is that this is of vital importance not just for the severely disabled – let alone severely disabled academically qualified persons like myself – but in the interests of ensuring truly meaningful work for support workers.

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, and additionally taking on the role as a ghost writer as well, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least, Mercy Ndegwa who’s continually teaching me how to be a better person.

THE NEED FOR HUMAN INTERACTION

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.

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.

HOW LOW CAN SCOMO GO?

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.

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.

Independent strategies for urinating and toilet routines in relation to Friedreich’s Ataxia.

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.

Senator Jordon Steele-John on ABC’s Q&A

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.