Pearls and Irritations

Why shouldn’t my participation in the development of (disability) social policy through academic research and writing – voluntary or not – be viewed as a substantial contribution to Australia? I do not understand “mutual obligation” in the individualistic way that government and neo-liberal social policy interprets it.

The political buzz-word’s during Prime Minister Howard’s leadership from 1996-2007 was ”mutual obligation”. The term interested me then and still does. This is how the political definition of the term is described: ‘Mutual Obligation is based on a concept that welfare assistance provided, should involve some return responsibilities for the recipient’.

In response to the assistance I have received over the years, I have played my part with the difficulties I have faced. At every stage of my journey exploring all of life’s pursuits, I have desperately tried to better myself. At the same time I have sought to better society to the best of my abilities. I have done so, I would like to emphasise, through my academic and publishing achievements.

A recipient of welfare assistance is usually understood to be obligated to “pay back” by HECS or engage in “social service” tasks or volunteer activities – but what I wish to say here is this: my academic activities (and success) by contributing as a researcher and disability advocate, constitutes my attempt to fulfill my side of the “mutual obligation” contract. I have therefore, played my part with the hand that I have been dealt, although in public discourse about “disability” I do not hear much about such contributions being understood as part of “mutual obligation”. They are usually applauded as “achievements”.

I have written previously about this aspect of my academic and research involvement. Upon graduating with my PhD in 2006, an important statistical fact was impressed upon me by educators who were congratulating me for my achievement: only 1 percent of people world-wide have ever successfully completed a PhD.

However much that fact indicated I was in a special elite class, I then had to live within the contrast that, after my PhD, life became more difficult. Yes, my life was my own but it was extremely constrained by the fact that, despite having a PhD, I still had no job, no money and very little chance of ever obtaining a professional position that coincided with such qualifications. Okay, I reflected, I may never starve. But is there not more to life than just getting from one meal to the next? How can a person achieve anything in a body that restricts achievement in a basic way? 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 do firmly believe that had I been given the opportunity, at the time I graduated with my PhD, that I would have been able to be part of a research team that challenged the very hard-edge facts about the progression of Friedreich’s Ataxia, facts that have been integral to my own life and experience. This challenging research was something that was needed then and it is still needed. But unfortunately, finding such work was not possible for me, even if I could have contributed full-time to such research.

Yet I persistently look on the brighter side of things, even in the midst of disappointment. In that situation, I committed myself to do what I could through blogs, on-line publication, book writing and publishing. These have been my “post-doc” research activity. I continue to try and make available the kinds of social policy insights that have arisen from my work. Doing so was and is part of my “obligation”.

I do not understand “mutual obligation” in the individualistic way that neo-liberal social policy is prone to interpret it. Why shouldn’t my understanding of and participation in the development of (disability) social policy be viewed as a substantial contribution? Am I supposed to be satisfied with sitting back and allowing people to congratulate me on my PhD and publishing success?

This article is my attempt to challenge that passivity and resist the persistent stigmas that surround my disability. An individualistic view of “mutual obligation” is the other side of disability being automatically assumed as a disutility by employers. And that means I am assumed to be “passive” – I receive but what am I to give?

I’m not a “show off” and believe “bragging” is a waste of time. But I do think that I still have something to offer and that is why I continue to write as I do. “Disability” is not my hobby. It is no leisure activity.

Am I being unrealistic to suggest that my “story”, including my “analysis” of disability support “from the inside”, has something vital to offer our community? Is it not relevant to the policy developed by the National Disability Insurance Scheme (NDIS) which is now assisting me in a day to day sense? NDIS is evidence to me of “mutual obligation” from the “other side”.

This essay can be composed because of NDIS assistance. Since my disability is so profound and challenging, I cannot do even the basic tasks like feeding myself. Even wheeling my chair is impossible for me. Most importantly, my speech is leaving me – 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, With NDIS support I am enabled to continue to make a contribution, as limited and small that it might be. But that kind of community support, as a vital community resource recognised by the Federal Government, means not only that support is given to recipients like myself, but that the wider community can continue to receive the contributions that have been seeded and nurtured in my life by such social welfare as a contribution to the “common good”.

Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers..

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