Another Hurdle I Must Get Over

Mutual obligation was a political buzz-word during Prime Minister Howard’s leadership from 1996-2007. Let me be frank, when we are talking about mutual obligation, the political definition of the term describes it as such: ‘Mutual Obligation is based on a concept that welfare assistance provided, should involve some return responsibilities for the recipient’.

In despair and frustration at every level, lives coherent thought. At every stage of life’s pursuits, I have desperately tried to better myself, and better society to the best of my abilities. I have done so, through my academic achievements. And yes, in comparison to society’s norm, there has been a failure to understand that my academic success and contributions as an academic/ disability advocate is a form of mutual obligation. I have therefore, played my part with the hand that I have been dealt with.

Upon graduating with my PhD in 2006, important people told me an important statistical fact; that is, that only 1 percent of people world-wide have successfully completed a PhD. However, after my PhD, my life became more difficult. My life was my own but it was extremely constrained by the fact that I now have a PhD but have no job, no money and very little chance of ever obtaining a professional position that coincides with my qualifications. Okay, I may never starve, but there is more to life than just getting from one meal to the next. How can I achieve anything in a body that restricts me from achieving? I put it like this in my book;

In 2007, I was presented with the Emerging Disability Leader Award. I also applied for many positions after graduating, after being ‘doctored’. I am confident that I could have performed well in many of these positions, but I was unable to secure employment. The constraints that are assumed from a neoliberal economic perspective mean that even not-for-profit firms find it difficult to employ people like myself. I believe I know how to make a contribution that could improve or at least maintain viability of the services offered by such firms. But to this day my ‘mutual obligation in public service’ is channelled through board positions, which can never allow me the active social inclusion that regular employment would provide.

I believe that had I been given the opportunity, with my PhD, I would have been able to challenge the hard edge facts about the progression of Friedreich’s Ataxia. Instead I spent most of the last six years in shared support accommodation which has severely negatively impacted my life. I look back on the last six years and come to a sad conclusion. For some considerable time, I have been losing control of my movements. But from July 2011 there has occurred a progressive loss of control that is potentially more fundamental than the biological loss of muscular power. It has not been physiological so much as social and personal. What am I referring to? July 2011, six years ago, was when I moved into a group-home for people with high support needs.

Why do I deserve mutual obligation? The development of my education has not been viewed by the wider community as a substantial contribution because of the stigmas surrounding my disability, disutility of employers, and the lack of employment opportunities I have been given.

But what does this all have to do with me getting NDIS? My disability is so profound and challenging, that now I cannot do even the basic tasks like feeding myself. Even wheeling my chair is impossible for me. Most importantly, my speech – I am finding it difficult now to get even my basic words across. There are only a handful of people who can understand me because they are familiar with me, so the constant changeover of support staff in shared support accommodation is detrimental to me.

Speech deterioration is a factor that can be helped adequately through involvement in everyday conversation, but in the living environment I’ve been housed, it becomes a very problematic, complex situation that will standardise residents’ speech or communication. This situation adds more pain and stress for me, and only creates another hurdle for future contributions.

My need for constant care is something that cannot be logically done in shared support accommodation. I have always done whatever I could in life; the most notable achievement being the pursuit of my education from the ages of 28-43, the time of severe progression of my Friedreich’s Ataxia. The Federal Government have now got the ability to do more for me, and others in my situation.

A special thanks to Christina Irugalbandara for her excellence in academic support work.

 

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Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

1 thought on “Another Hurdle I Must Get Over”

  1. Hello Peter. My name is Tim and I was the Agent involved in the sale of your place of residence at Dandenong several years ago.
    I have always admired your writings and your sense of purpose. You have such a strong spirit to achieve. I also feel your frustrations..
    You also demonstrate amazing persistence.
    Often goals are achieved by persisting and persisting !! I wish you every success with your endeavours.

    Like

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