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The dignity of risk for the disabled

By Peter Gibilisco - posted Thursday, 24 July 2014


I could enter this house only after a total rearrangement of most of my equipment, which I have been using for many years. And all of a sudden, the equipment I had used was dispensed with because it apparently did not meet the safety standards of the new house. Standard procedure is one thing; care in supporting those with disability ought not be neglected. But this aspect of my move have cost me a lot of money and caused emotional turmoil.

Sure, cause of very slurred speech, I have difficulties communicating with management, but they should reckon with me as someone who is qualified (I do have a PhD and have studied sociology, economics and management). And if they are not taking my opinions into consideration, then they should know they are making me feel as if I am a person with a cognitive disability. I am very supportive and sympathetic of many clients in this house who have cognitive disabilities, but I am not one. I am also supportive and sympathetic of the workers. They need to be encouraged to take the views of clients – in this case like myself – into account.

The potential of synergy as a way forward for the disability sector

Consider 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.

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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 that are courteous, mutually beneficial and helpful. The pathway needs to be identified so that by travelling it together, both parties can truly share life together. 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 people with different abilities and support workers in a dynamic, merit-based society.

The synergistic outcomes that can flow from this form of flexible support can be demonstrated through my own (unpaid) work output. Synergy is a term that is popular in most Human Resource Management departments. Simply defined it means that the whole is greater than the sum of its parts, i.e., 1+1=3. In my case the synergistic partnership between my support worker and me allows me to flourish in my role as a disability activist

For example, the synergy that is provided to me through the intervention of flexible disability support provides me with the means to achieve many of my goals in life. This approach to personal care is cohesive and flexible and humane. It allows me to manage the complexities of my life and desires. It helps me to attain my full human potential when and where my bodily abilities are lacking. For example, my progressive illness creates a deterioration of motor skills, which leaves all my physical attributes severely disabled. However, I am still able to perform research and write articles at a significant 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 support worker.

This synergy explains the transformation that takes place in people with such different abilities and support workers, 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 support workers-this then, in my view, is the path to unify and enhance the disability sector.

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

Consider these thoughts of Amanda Gunawardena my current Academic Support Worker.

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My name is Amanda Gunawardena and I am an Academic Support Worker at the University of Melbourne. I assist Direct Employers like Peter with computer based administrative tasks. Peter's knowledge and my abilities combined together generally produces fast, efficient and improved results as can be noted in this article. Peter has a lot of intelligence and expertise in the field of his study, but his abilities to put his thoughts to words is restricted by his slow typing speed, poor speech and eyesight. However, when I am there to assist him, this means that he can get his thoughts on paper at 50 words per minute.

For example, in July 2013 I had to help Peter prepare a conference paper as he was a keynote speaker at the Direct Support Professionals Conference at the University of Sydney. But not only did I help Peter to prepare the paper, I helped him train another support worker to play his paper using a software which translates text to speech and play a PowerPoint presentation. This is a task that would take Peter a phenomenal amount of time and effort, but due to our synergistic partnership, I was able to do this in next to no time.

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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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