My life has evolved through many highs and lows. One significant low came in 1976, when I was diagnosed with the onset of Friedreich’s Ataxia at the age of 14. Friedreich’s Ataxia is a progressive disease affecting neuro-muscular co-ordination. It drove me into a wheelchair by the age of 23.
My only apparent initial physical abnormalities were the appearance and unco-ordinated gait of a drunk, but I quickly became expert at hiding such frailties. For whatever reasons, I was never without friends, and was never, to my knowledge, made fun of by school friends and peers.
When I was 18, my mother died of cancer. This was an emotional time, and my disease temporarily took control of me, leading to a physical and emotional downward spiral. But fortunately the closeness of family and friends helped ease the pain. They helped me to attain some form of self-esteem, and to maintain pride in my life. At 18 I was free, and able to seek activities and forms of stimulation that were outside the regular happenings of adolescence. I succumbed to the lure of city-based discothèques, where not everybody appreciated my uniquely unco-ordinated style of dancing. I was an easy target for bullies, and on a couple of occasions, this developed into trouble.
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At 23 I had a life-changing experience involving a trip overseas with my cousin. Things got a bit wild there: and a bit mischievous with the opposite sex. I ended up back in Melbourne at St Vincent’s Hospital in Fitzroy. While in St Vincent’s, around the time of my rehabilitation from hospital to home, I started dating a beautiful young nurse by the name of Kristine. This allowed me to spend the weekends out of hospital, and to pursue my utopian dreams of an existence with a beautiful lady.
Soon after I got out of hospital, I went into a wheelchair permanently, but life also showed me a more promising side. Kristine and I decided to move in together, possibly to see how far we could bring our relationship. After six months we got engaged. However, for reasons related to my disability, the engagement ended six months later. I can look back at what was and how it ended, and in hindsight, I realise what happened may have been for the best.
I believe one of my greatest failures in the relationship was my inability to create a future for myself. I was not living a life, I was living a fantasy - a fantasy based on false expectations. But was the fantasy all my life could be? Is it a fantasy to believe you can maintain a relationship while in a wheelchair with a degenerative illness? Could I change things?
On many occasions Kristine and I spoke of the possibility of furthering my studies, and agreed this could help me improve my life. Following the break-up and after a few months of feeling sorry for myself, I enrolled in a TAFE Diploma in Business Studies (Accounting). I hadn't attempted HSC while at High school, so university study was out of the picture for the time being. My years at TAFE were a lot of fun, giving me the inspiration to tackle life with vigour once again. The memories of TAFE are joyous, and there are many times that I wish that time would return. Dandenong TAFE was a place where discrimination was not an issue, allowing me to complete the Diploma unhindered. I still savour the memories of TAFE when I need cheering up.
From there, I took the next step in the academic process, enrolling at the Peninsula campus of Monash University. Monash prides itself on being the workplace of the academically gifted, studious student. I was no longer in control. I had to give to receive. All students felt the pressure to earn higher than average marks. If you want to succeed at university level you have to be a studious student. Monash University quickly put a stop to all my fun and games of the TAFE years, but I started achieving some fair grades.
In 1994, I changed degrees, from Accounting to a double degree in Arts and Accounting. This change saw me placing more emphasis on the study of sociology, rather than accounting. Sociology is a subject dealing with the phenomenon of life and its interaction with society: its societally-based virtues and ideals. Sociology examines the structure of social relationships, and allows one to develop reasons for interdependent and contingent social happenings.
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Sociology allowed me to have the belief and confidence to achieve my goals, instead of subjecting me to the hurtful and negative thoughts of many people in society who would argue that most people with disabilities cannot play a meaningful role in society, and will be dependent on others for many of the most mundane human functions. However, most of these damning thoughts are quickly made to look and sound stupid by most forms of sociological theory. Sociology helped me put my life in perspective. While it may not be a mainstream opinion, it grabbed hold of my mind and inspired me. It also made a lot of sense.
The extra boost I got from sociology not only gave me the drive to complete my Arts degree, but also inspired me to complete the Accounting degree. I graduated in 1997. I continued my studies in sociology in 1997, because I did still not want to face the harsh stereotypical views of many in the world of employment, and the possibility of interviews with employers making decisions on the basis of stereotypes about people with disabilities.
Such discriminatory misjudgments can be damaging, especially to people who have severe disabilities and already suffer from low self esteem. So I started a Masters qualifying year in sociology at Monash, taking on a broad range of subjects, from sociology to economics and political science. This gave me a greater understanding of how the world works in relation to sociology, and allowed me to develop my own sociological perspective on issues of news and current affairs. I completed the Master of Arts degree in April 2000.
I then started what proved to be my most rewarding years as a student, as a PhD candidate at the University of Melbourne. In the years doing the PhD, I have gained extra motivation from events such as receiving the prestigious June Opie Fellowship in 2001, and a Melbourne Research Scholarship in 2002-03. My work has been published in academic journals such as the Journal of Australian Political Economy, and I also intervene in public debates, presenting my work at major conferences and publishing my work in forums such as On Line Opinion.
My thesis, "The political economy of disablement: a sociological analysis", examines the policy approaches of social democracy, the third way, and neo-liberalism in the contexts of education, employment, and service provision for people with disabilities. Ultimately, I argue, neo-liberal and third way policy approaches result in greater social exclusion for people with disabilities, whereas pragmatic social democracy, as inspired by the work of Hugh Stretton and Marta Russell, provides a means for people with disabilities to empower themselves. I successfully completed my PhD in December 2005, and I will attend my graduation ceremony in March.
Through the combination of my life experiences, employment and study, I am already actively engaged in working to make the world a more just society for all, and I am now looking forward to the challenges of the years ahead as I continue with this work.