Last week, on March 29, I was a keynote speaker at the Monash Human Library which was held in the Peninsular campus. This was conducted to an audience of about 100 OTs – both students and professionals. My keynote speech explored the individualistic pursuits of Friedreich’s Ataxia which can be summarised as follows:
The need for support for my impairment has placed me under constant pressure. That is, I want to be able to function and work at fulfilling my desired needs and wants, but this requires appropriate hours of attendant care. Unfortunately, I am not independently wealthy, and the state system does not provide adequately, in its current form, for all that is required for my particular care.
After my PhD, my options have improved in some ways, but, in reality, I have to ask myself if the cost–benefits involved in pursuing academic excellence are really worth it. Will my degrees give me the necessary skills to pursue my goals of assisting in the provision of a just and inclusive society for people with disabilities? Are such pursuits beyond me because of my affliction? Or do my personal narratives identify the political hurdles with greater clarity for others with severe physical disabilities?
I also took part as a ‘book’, where ‘readers’ came to me to listen to my story. I gave them a lived experience of living with a severe disability, and the importance of friendships between disability support workers and the people they care for. Support workers are the first faces we see in the morning and last faces we see at night. I suspect that these kinds of presumptions are alive and well elsewhere in the delivery of social welfare and I am keen to preserve the basic friendships that are keeping me going, even as I find my body simply slowing down. This is a very important topic for me, and one that I am very passionate about. I am grateful to have been asked to take part in this program.
Due to my inability to speak clearly, I spoke through my computer, with the aid of speech software.
My New Book
I have been working for some time on a new book about my life in shared support accommodation. It goes into detail about the hurdles and hardships I have had to overcome in the past six and a half years. A working title for it is ‘Six and a Half Years in a Dung-hill: Life in Specialist Disability Accommodation’. The book develops a series of key themes: analysing neoliberalism; looking at the drivers of disability and their penny-pinching tactics; synergy between support workers in shared support accommodation and the residents like me; a push for justice for people with severe physical disabilities; and a focus on whether disability can hinder you from achieving. Through these steps, the analysis moves from looking at broad social and political ideas and structures, considering the implications for people with disabilities, to looking at specific policy areas; it is structured autobiographically with a focus on my story as a case study.
This was all done with the help of my brilliant and lovely academic support worker, Christina Irugalbandara.