Peter Gibilisco. A Synergistic Approach to Disability

Here is my proposal for a Dictionary definition of Synergy:

the interaction or cooperation of two or more organizations, substances, or other agents to produce a combined effect greater than the sum of their separate effects.

“the synergy between artist and record company” or disability support workers and people with disabilities with high support needs.

In some of my writings I have referred to what I call the “synergistic” outcomes that result from the interaction of people with disabilities and their support workers. These effective working relationships should be given the respect that is their due since they make an indispensable contribution to ongoing efforts to devise effective models of leadership in such workplaces.

But then I ask: Why are these highly successful working relationships so often below the radar when it comes to forming social welfare policies for the disabled? Could it be that these highly efficient working relationships are simply out of sight and out of mind? Is that why they seem to be ignored when it comes to the discussion of how to make improvements in the disability workforce? Maybe we need to look again at the manuals that are written for workers and develop a distinctively new theory of management. And why not? The synergistic approach I advocate might best be seen as an “inside out” approach to the management and organisation of the disability workforce. It will demonstrate public confidence in the abilities of the people who are served to exercise control over their own lives. Let me try and explain this “synergistic” model of work-place leadership in more detail. In order to make sure that this kind of model is flexible enough to allow change, even if complete change does not take place, the aim is to avoid an approach which sees the disabled person as a problem and instead reckon with such a person as a “problem-solver”, just like anyone else, and just like the support worker as well. In this a “synergistic” model develops a distinctive understanding of societal inclusion.

In this context, an emphasis upon synergy for the disability workforce aims to provide a corrective to the guidance that is often put to people with these “different abilities” and their support workers. To have an “inside out” approach is about reckoning with life chances and the creation of opportunities. Therefore, by initiating such an approach we confront the support worker who sometimes sees him/herself as a person languishing at the lowest, grass roots level who then needs the disability sector for employment. We need to turn this around. In my view a synergistic approach to the disability sector is not just about better help for the disabled person – it is about raising the status of all involved, and ascribing due respect.

It may be highly contentious to say outright that disabled people are second-rate citizens but if so much of our social value is measured by income then maybe “2nd rate citizen” is exactly what the income disparity tells us.

In the disability field, does love conquer all?

The best form of care is, of course, supplied by family members or close friends. These are those whose support is supplied by love. They are living testimony that love conquers all. Love is mighty and powerful and particularly when administered with compassion, empathy and patience.

Wherever we may be located by the flow-charts of such organisations, we are all human with our own individual pursuits of happiness. When it comes to high support needs for people with disabilities, love is something that is beyond the control of the “medical model’s” contribution to meeting the needs of disability. But hopefully it will be there as the indispensable motor of any positive medical contribution. A person with a disability at times will require more than just physical support in medical, dietary and psychological terms. That is, we need to promote communities of people who consciously function in ways that humanise the clinical methodology of the medical model, and this can be done by giving greater attention to what I would thereby call “the social model”. Society is a network of coinciding and interdependent responsibilities. An emphasis upon a “social model” of disability support will find it is necessary to emphasize this again and again.

Let me give an example that has stuck in my mind. Some time ago, around 1987, a friend of mine with Friedreich’s Ataxia (the same disease I have) was to be married to the guy of her dreams (an able-bodied individual). But as she signed the register, she became so excited that she suffered a heart attack and died. In hindsight, the wedding was a beautiful moment, and the embodiment of the social model. But now I am wondering: what should have been done to prevent the heart attack? Perhaps those enthused by the prospects of her wedding had under-estimated the impact of their own advice upon those with “medical model” responsibilities. In other words, we need to find the wisdom to enhance the interaction, the synergy, between the medical and social models of disability. That synergy is important. It is so important. 

I have come, much to my own surprise, to another related conundrum: how can the medical model be modified to avoid a standardised approach to disability care that simply confirms mythic stereotypes about seriously disabled people. I struggle daily with the way the facility where I live in shared support accommodation is managed. I am therefore wondering whether at a deep, cultural level its modus operandi presupposes the medical model. I’m wondering: is the organisation somehow stuck in a rut assuming that we residents are actually “sick”, that our lives are basically structured by illness?

I’m not saying that the residents are free of physiological problems that require special care. I am not even thinking here primarily about physiology; I am thinking about the way in which our “roles” are understood by the prevailing management. Are we, in effect, occupying the role bundle of the person who is sick, who is subject to medical care?

It is perhaps somewhat dangerous (it might seem that I am tooting my own trumpet) but consider my own case. Before coming to live in this place, I lived for 21 years(1990-2011), on my own and during those 21 years I completed a double degree in Arts and Accounting at Monash University, a Master of Arts at Monash University and finally a PhD at the University of Melbourne. This is not to say those years were easy; of course I had added pressure upon me in my studying because of the physiological complexities that had to be addressed by medical means since the onset of Friedreich’s Ataxia at 14(1976). University started when I lived on my own at 28, and graduating with my PhD at 43(1991-2006)). Over the 21 years of living on my own I had two long stays in hospital, but all in all my educational conquests far outweigh any medical complications. This all has me thinking: I’m living as part of a situation in which I have been confronted by nothing less than the reality of what I have referred to above as “the social model”. This is a situation that will be endorsed by most people who have physical disabilities without any intellectual impairment.

To conclude this reflection about synergy – love and the management of the disability sector, leads me to encourage us all, particularly public policy researchers, senior management in “not for profit” organisations and elsewhere, to think carefully about the “who?” question when dealing with the severely disabled people they are committed to serving. This certainly means that an ethos of equity is needed along with the legislated provision of further assistance. It will require political courage to ensure that an ethical culture is developed in which people with disabilities who have high support needs are cared for individually and effectively.

I prefer the term “resident” to the current lingo that wants to view me as a “customer”, which can be used in stereotypical ways to standardise care and thus give rise to stereotyped opinions in public discourse.

My desire to rise above the privations of this shared support accommodation fuels my motivation for this and also many of my previous articles. Thanks for reading.

A special thank you to Bruce Wearne for his editing and helping to tweak this piece and Christina Irugalbandara for her excellence and academic support work.

Dr Peter Gibilisco is an Honorary Fellow, University of Melbourne. He has published a book ‘The Politics of Disability’. 

 

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