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Choose equality!

By Peter Gibilisco and Bruce Wearne - posted Wednesday, 23 September 2015


Bruce Wearne

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.

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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:

Peter Gibilisco

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!

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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.

I know what I am saying here is blunt and if I still had a voice you would have heard me shouting. Believe me, I am trying to stay sane and with humour even though this exercise has made me very upset. Frankly, I'm very worried about the impact of these changes to budgets and payment upon my ongoing contribution. But now I think I have to put before you all I need to say. While big changes are being made at federal and state level, residents should not be expected to take a significant hit to our lifestyle and we should not be expected to put our worries and concerns on ice.

For example, the federal and state issues are causing confusion – there is a crucial question here: is the rental allowance still to be a deductible item in a federally based system, to a state run organisation? That is just one question and I'm sure there are more. I can understand that service provider has real budget issues. But it is still us residents who provide (yes provide) the organisation with its basic purpose and that needs to be kept in mind when budget policy is implemented. There needs to be a genuine expression of equity across the entire organisation and residents should not be made to feel they are the organisation's cash-cow.

Such a choice in terms of genuine equity should be a known preference to the service provider's top managers. Let me be frank and specific. Is it possible, in the current climate, for the service provider's top management to become genuine public advocates for an ethos of equality across the entire organisation. I would have thought that they are corporately bound to uphold and safeguard the much-needed equitable and pragmatic functions of service providers (support workers) and residents in shared support accommodation. But how can they actually do this without becoming political advocates of a fundamental change to how senior management is configured legally, how their "high salaries" are calculated? This seems to me to be an important nub of the problem. Are senior management in some way legally prevented from speaking out against the unjust inequities that accrue to themselves as senior management?

To extend this line of argument, let me now draw attention to the consequences for disability pensioners of the possible increase of their residential rents. Will this not mean a corresponding reduction in disposable income and an increased potential for becoming those trapped in poverty?

Consider, our pension is a fixed living allowance; that is, professionally and scientifically judged to allow people with severe disabilities to live a life where some form of amelioration becomes a real possibility. We also must not forget the prevalent reality that most disability service providers carry the banner and highlight the fact that they are charitable organisations. "Choose equality!" is service provider logo.

But how does the choice of equality fit with service providers who are known for their core involvement in care for people with disabilities, when comparatively very large payments go to top level management? What is their remuneration package? How does it compare with average weekly ownings? It is not exactly a salary bordering on destitution. So then, why are Australia's most vulnerable people put at further risk, by allowing people with severe disabilities to absorb the budgetary restraints? "Choose equality!"

It is service providers motto which is "Choose Equality!". It's emblazoned on everything it publishes. Just who are being chosen for "equality" here?

Peter Gibilisco and Bruce Wearne

Somehow our understanding of political responsibility needs a fundamental rejigging. We need to redefine "advocacy" so that it is not put under constraint by corporate capitalist values. Those who are corporately responsible to implement "equity" across their welfare organisations, like senior management, should not feel that they are prevented, by some or other subtlety in corporate law, from publicly advocating just economic and income distribution. To do so will also mean promoting salary cuts at the "top end of town". Indeed let them show that they "choose equality"!

If we want to build a just economy, with an equitable system of welfare provision, then we should encourage social welfare providers, and social welfare providers should join in the effort, to develop such a self-denying approach to management! "Choose equality!" Let us move away from slogans and "smiley face" manipulation to genuine welfare, to genuine equity.

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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).

Other articles by these Authors

All articles by Peter Gibilisco
All articles by Bruce Wearne

Creative Commons LicenseThis work is licensed under a Creative Commons License.

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