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Achieving a synergy for the disabled

By Peter Gibilisco - posted Tuesday, 19 May 2009


The purpose of this paper will be to explore and promote the dynamics of mutually beneficial partnerships between attendant carers and the people they care for, people who, rather than being merely disabled should be viewed as those with many different abilities. This exploration considers some pragmatic examples which encourage the participation of these people in contributing to a more inclusive society. The underlying goal of mutually beneficial partnerships is to chart the further education of those directly and indirectly related to disability work. The aim is to identify the pathways of courteous, mutually beneficial and helpful relating and partnering. The pathway needs to be identified so that by travelling it together, both parties (and all other parties) can truly share life together.

This partnering approach is currently being developed by the Learning Partnership Project, which consisted of 10 diversely abled people, five people with disabilities/different abilities and five attendant carers. The exchange of views developed a sense of comradeship, a truly empowering experience for such a diverse group. So the question arises: what benefits can such a partnership offer to the disability sector as a whole?

The potential benefits for developing such mutually beneficial partnerships are substantial. The flow-on will be to all those in society who are indirectly and directly related to disability. For example, there is an unlimited possibility for the transference of abilities, which will create a new potential for social inclusion of people with different abilities and attendant carers in a dynamic, merit-based society

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The synergistic outcomes that can flow from this form of flexible support can be demonstrated through my own (unpaid) work. Synergy is a term that is popular in most human resource management departments, and simply defined it means that the whole is greater than the sum of its parts, i.e., 1+1=3: or in my case the synergistic partnership created by the role of a mutually beneficial partnership between a person with my specific abilities and my attendant carer, allow me to flourish in my role as a disability activist-cum-independent scholar.

For example, the synergy I gain through the intervention of flexible disability support, provides me with the means to achieve many of my goals in life. This flexible personal care is needed to manage the complexities of infinitely varied human behaviours of those people with disabilities. It provides for a sustainable future in relation to my own desires and plans and also for many others with different abilities.

This is done through assistance that helps me attain my full human potential when and where my physical ability is lacking. For example, I suffer from a progressive illness which means a stready deterioration of my motor skills, which leaves all my physical attributes severely disabled. However, I am still able to perform research and write articles at a phenomenal rate, beyond that of many paid workers in the disability sector. Basically my performance is created through the synergy gained mainly through the work of my attendant carer.

This synergy explains the transformation that takes place in people with such different abilities and attendant carers, where the mutual benefits that occur will provide for a more proficient and humanly thoughtful disability sector, providing for a more inclusive society. Synergy becomes a fundamentally conscious event, which motivates, transforms and unifies all of life with a concerted and organised combination of such people of different abilities and attendant carers - this then in my view is the path to unify and enhance the disability sector.

Synergy for people with different abilities and attendant carers is about life chances and the creation of opportunities. Therefore, the essence of synergy is to value difference.

In the Learning Partnerships Project there was a need to look at the methods of training in support service personnel to be competent providers of disability services. There is a need to put more emphasis on pragmatic training, rather than following a systematic theoretical approach that has become far too technical and clinical and has forgotten to strive for excellence.

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Hence, this approach assumes that attitudes are not to be recognised by a theoretically calculated skill level, since an attitude is a relationship, that is, a relationships are the key to the skills acquired and applied.

As humans, most people, including the ones we are concerned with who have such different abilities, lead lives that are too complex to be systematised. That is, one cannot expect people to have the same behavioural responses to different stimuli. Thus, attendant carers need to look pragmatically at the needs of people with such different abilities as they carry out their support. However, this is not to discount or diminish contemporary training for attendant carers, since academic programs should be used to develop such positive pragmatic thought.

Further to this is the case for policy. There is a website to promote mutually beneficial partnerships, ways of discouraging stereotypes and the respect of the diversity of disability, through methods that encourage a broad and collective approach to disability service provision. Mutually beneficial partnerships explore ways of developing policy. This was recognised in the underlying assumptions of Victoria's State Disability Plan 2002-2012.

Thus, the Learning Partnership Project offers further empirical evidence to support the goals of that plan. It aims to provide a strong and flexible agenda for change. It reaffirms the rights of people with a disability to live and participate in the community on an equal footing with other citizens of Victoria. This project has, as its goal, the further justification of much needed flexibility and inclusiveness to which the State Disability Plan appeals.

The Learning Partnerships Project is fundamentally to explore and understand some deeper issues facing such differently and diversely gifted people. These issues are created by overloaded systems of support that is struggling to meet growing demand. Thus, the Learning Partnerships Project is synergistically implemented to improve the working relationship and lessen the demands upon the attendant carers. It is capable of highlighting and exploring the examples that have been developed for public viewing available at the following at notjustwork.info

I will now give an example from the website, which outlines some of the conquests of synergistic approach from the perspective of Debbie Mackenzie, who is a member of the Learning Partnerships Project and one of my attendant carers, who has shown me and many others her human instincts concerning one of our calculated risks:

When I began assisting with the research Dr Gibilisco would later conduct in Hawaii early in 2008, I became aware that there were people with a general interest in the planned research. There were a variety of views. On reflection and with the wisdom of hindsight I now can see and appreciate the spectrum of opinion. Some people expressed enthusiastic support; they were excited about the project. Others, however, were more reserved. They seemed to express an undefined concern and I suspect they found it difficult to believe that such a trip could be possible. And yes, there were obstacles we had to overcome; however there was never a lack of determination to see it through.

Most people involved in the network contributed with enthusiasm, but there were others that preferred to step back in fear that it may fail. I observed people not being able to comprehend how Dr Gibilisco, a person with such a severe physical disability, could undertake the trip; unfortunately, they let his disability get in the way of appreciating his capabilities. Also, there was incomprehension about me as the support worker. How would I be able to productively assist with the requirements of personal care while also assisting Dr Gibilisco with his research work and its complex demands.

This is a brief preview of a small and worthy contribution to the website. That is capable of helping us identify, while outlining some prevailing negative forms of sympathy (not empathy) towards people with severe disabilities or different abilities. While underlying some possibilities created through synergy and hence, mutually beneficial partnerships

Therefore, this paper acknowledges the principle that creates order from disorder.

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This paper was developed from a paper that I gave at the annual Disability Professionals Victoria Conference. Many thanks to Bruce Wearne for his assistance



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About the Author

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.

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