I have utmost confidence in Peter Gibilisco. For over 25 years I have known his patience and forbearance in all that he has ever attempted. That he is finding it difficult to remain charitable in this situation confirms my view that this is an appeal from a situation of extreme frustration and sense of vulnerability. I am confident from what he has told me - and he keeps me regularly informed - that it should never have got to this situation.
Peter is not vindictive. In everything he has done over the time I have known him there has not even been one instance in which he has expressed anger like he has in recent times. This is exceptional and needs executive attention forthwith.
He should not have to plead his own case like this. He is not hanging out to be treated as a "special case". He is simply appealing for support workers, who take the time to understand him, who are willing to learn from him how they can learn what he is trying to communicate. He is not saying this is easy; he knows that all too well. It is not just about what disability support workers can learn from him about his condition and how to be supportive, their friendship extends in all kinds of ways just like any friendship does. Moreover, he is concerned about their situation, and in particular, their work conditions. And so Peter is particularly concerned about a form of management that assumes that he is simply a somewhat passive recipient about what is provided to him by the "provider". He's keen to emphasize that he is wanting to see the emergence of a facility "ethos" in which residents are respected for their active responsibility. Being a resident does not mean passivity when it comes to promoting justice and fairness for all.
Now please listen and attend to what Peter has to say for himself:
I was diagnosed with a progressive disability called Friedreich's Ataxia at 14; I am now 53. My continued efforts to express my deep disagreement as publicly as I can, have to do with the provider's management policies for this shared supported accommodation facility to support a group of people with various disabilities.
In developing my role as an advocate of social justice, I am able to draw on my past of 4 decades. During this time I have had to find ways of remaining positive despite this blight that is not of my own making.
My current lifestyle includes regular efforts to raise my voice in writing op-ed pieces. These are not just a hobby, believe me, and they are important to me in terms of my "self-image" as an active participant, a resident with something to say!
I cannot help but recall my former efforts to support myself before I came to this shared supported accommodation. In coming here I had assumed I was going to be supported to maintain a degree of personal command over my own situation. Yes, my condition is a progressive one and so it is not exactly the same as before. This change creates a paradoxical situation, a tension between what is and what could be? Still, I have had to live within this tension for these 40 years. It's not just something that has popped up for me with the service provider. But at times I feel as if the service provider in its senior management has a serious case of paralysis!
Now I am a rather sensitive fellow; I will admit that. And those who hear what I have to say they should try to keep in mind that I have had to learn to read the responses of people who find it difficult to relate to me, and I suspect, other people with disabilities. OK. I can concede that not everyone has the talent of empathy, of instinctively developing what I have called "synergy" with guys like me suffering the impact of Friedreich's Ataxia. But forgive me for saying so but over the last year I have become very dismayed with what I sense is the response of the service provider's top management. The "message" that comes through to me, and I believe to others as well, is that they are adopting a manner that treats us (me included) like fools. I believe that there's a serious "disconnect" here.
The resulting impression is that management lacks integrity. They do not seem to understand that their approach gives us disabled clients ambiguous "feeds". It comes across as if service providers major problem is all about retaining top management in the life to which they have become accustomed.
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About the Authors
Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.
Bruce Wearne is a doctoral graduate from LaTrobe University (1985),
having also gained qualifications from Monash University (B.A.
1969-1971) and the University of Waikato, New Zealand (M.SocSc 1978).