This short statement gives a general understanding of the predicaments that led to my hunger strike:
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 and life. 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 Yooralla group-home for people with high support needs.
The move came about after being encouraged by various people to enter this group home. This happened because the Department of Human Services, as it was then known, could not allocate an extra 3 hours per day that were necessary for me to work safely and productively during the day in my own residence.
At no stage was the kind of loss of control that I have subsequently experienced – in a personal and social sense – brought to my attention by those who were encouraging me to make this decision, not least those in charge of the facility in which I have subsequently found myself. The “movers and the shakers” in disability care, those who are stakeholders in the disability care industry, seek to find a solution that is cheap and safe, rather than one in which a flexible supporting regime can provide the resident with support that maintains the good things that have previously been a part of a life already constrained.
But hopefully this is all only confirmation of how much better life could be under the National Disability Insurance Scheme (NDIS), rather than how it is right now under Yooralla’s shared support accommodation. The NDIS has a social platform that rests on the provision of control, social empowerment and understanding.
The NDIS scheme is based on the view that control and choice about funding provided to people will be individually driven. This will mean an important shift in the power away from the government and service providers, like Yooralla, and into the hands of people with disabilities themselves and, of course, their families.
This is why I will be applying to the NDIS for early entry.
A special thanks to Bruce, for his mastery of editing and helping to tweak my piece and to Christina Irugalbandara for her excellence in academic support work.