My life to date has been unduly constrained by the enforcement of standardised practices, stereotypes and official policies designed to uphold the primary care of people with Friedreich’s Ataxia. I was diagnosed with onset at 14; now I’m 54.
This is a progressive disease, causing impairment to the nerves, and so a failure of timely muscle reactions throughout my body. The messages sent from the brain via neurotransmitters are slower and weaker than they should be. In turn, muscular growth is hampered, giving rise to severe deformities, limitations and other problems. For example, I have had to deal with severe scoliosis and cardio-myopathy. By 23, I was reliant on a wheelchair, but now I’m simply too uncoordinated to make use of an electric one. The condition also leads to severely slurred speech, meaning my communication was also seriously impaired later in life. Of late, my eyesight has been deteriorating, adding to the challenges that I already face.
Over these 40 years the disease has progressed significantly, but the most damaging to me is the deterioration of my speech. There is no doubt that every diagnostic implication of this disability severely impacts my life and with it the important need to communicate.
For me communication is the nucleus from which I attempt to attain my goals. It is explained in an article I had published with Adam Vogel in the BMJ.
“When I finished my PhD, there was a demand for speaking at conferences, but I never could. I used to have someone else read out my papers. It was hard for me to socialise and make connections within academia because of my slurred speech”.
Let me be specific: my slurred speech has gone through stages and since its onset at 14 it has regressed significantly. At first, from 14 to 17 my speech remained fairly good, or as good as it could be. I believe this was achieved through having a very active social life; that enabled me to involve myself in popular pursuits. The period from ages 18 to 23 was a very difficult time as my mother passed away with cancer when I was 18. This was a further trauma for me. Luckily, with the help of friends and family I was able to get through it.
After a few years of soul searching I found myself falling in love with a beautiful young nurse, having met her in hospital. We ended up living together for about 12 months and became engaged. This experience was great and one that even now I miss and continually remember with yearning. Unfortunately, the romance ended, six months after the engagement, and this break-up was not unrelated to my disability. Nevertheless, I am grateful for my ex-fiancée’s inspiration to further pursue my education. Therefore, this was the prequel to what has become my miraculous journey with education.
After, and to some degree during the relationship with my fiancée, I developed a strong desire to pursue education. Firstly, I completed an Associate Diploma in Business Studies (Accounting). Then I went to Monash University Peninsula and completed a double degree in Arts and Accounting. Afterwards I went to Monash University Clayton and did a Master of Arts. Finally, I went to University of Melbourne to complete a Doctor of Philosophy; this was achieved late into the disability’s progression. I still perform research with the university, as an honorary fellow.
There has been a strong correlation between the demand for education and my failure to speak properly. Education has compensated for my speech difficulties and has increased my exposure in a fundamental way to options I would not have considered if I had not embarked on further study.
My education has been something miraculous. But not being able to fully communicate has often left me vulnerable to stereotypes that are given bogus credibility by my speech impediment.
I see this process at work in the disability field and the strengthening of such stereotypes are, to a large degree, confirmed by the standardised processes that are part of the regimes by which care is administered.
But the progression of my disability was still devastating to me in terms of how I could involve myself in life and, it seemed, that an extremely broad range of life’s pursuits were simply beyond my reach.
However, in 1991 I began to consciously follow my own thoughts. Living on my own and later in life receiving the assistance of support workers I purposely aimed to become and remain personally responsible. I was able to receive a positive boost which ricocheted onto other features of my life.
This allowed me to have more control over my own affairs, even if they were difficult years. But the academic successes I attained having a severe disability, became an integral part in this miraculous journey. Living independently and having to speak for myself allowed me to keep at bay many of my speech impairments and try to function, in my own terms, as a credible human being. When I turned 49, I moved out from living on my own to join a group facility that’s run by a service provider. This is a situation where I felt like I had no control and my past dealings with education meant diddley-squat.
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 latest 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’ve tried against incredible odds but still maintained my solidarity for causes that will enhance human dignity and development. For me, this is a must.
A special thanks to Bruce Wearne, for his mastery of editing and helping to tweak my piece and Christina Irugalbandara for her excellence in academic support work.