I look back on the last five years and come to a sad conclusion. For some considerable time, I have been losing control of my movements. But 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, five years ago, was when I move into a 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 “client” with support that maintains the good things that have previously been a part of a life already constrained.
And so the title of my short article paints a thumbnail picture of my life without control over the last 5 years. Here I am, living in a group home, where most residents have some form of intellectual disability. When this displacement or misplacement is combined with other contextual factors such as an overworked support staff and to a large degree an incompetent management of the service provider, you may begin to sense how I am feeling that my lack of control is now pretty well wall-to-wall chaotic.
Please do not mistake the issue here. It has nothing to do with how my views might be perceived and is all about the individuality of persons living with disability. We are, after all, those who share a diverse humanity, and it may only be our physical or intellectual disability that separates us on some evaluations from a society’s so-called norms. What I am concerned about is addressing situations that impede a person’s control of life. I am wanting to look at theories that are capable of addressing the manner in which people’s freedom is constrained. Disabled persons are only a special case of persons enduring such unrecognised social constraint.
One of my first problems with the service happened in ‘Standardising Disability’ 2013, which is published in Online Opinion;
(Let me provide an example from my real-life experience that occurred on Tuesday evening the 19th of March 2013.) This is an account of another incident when, once more, I fell out of my wheelchair.
It was just after dinner. I need(ed) to empty my bladder, and as usual, my carers set me up in the appropriate way. But in so doing I slumped out of my chair, falling to its side. After waiting five minutes for the staff member to return, I decided to try to make myself a little more comfortable by moving a bit. But that movement had the opposite effect – my bodily involuntarily flung me forward and … crack. My hip was broken.
The staff-member arrived 30 seconds after this happened and I was in great pain and I finally conveyed to them that they should ring for an Ambulance to take me to the hospital.
Following on from there in this article I talk about my lack of control and my need to exit this place;
My real need is to exit this place where I have no control over my own life. The people making decisions for me are repeatedly making standardised decisions that leave out the most important factor: my true needs. This has been a recurrent aspect of the last few (years) that I’ve lived here, and the troubles I have had to confront.
In June 2015, I was confronted with another serious issue that covered our rent provision money. Here are some extracts of a speech I gave to managers of the service provider at a resolution meeting held at the office of disability services commissioner.
Therefore as you should see provision money for food is paid by clients from their pension…
The service provider needs to be held accountable for any rent or food provision monies extracted from clients…
Based on Yooralla’s figures a misappropriation of $3,200 from our food provision money over a 10 month period. This amount is not material to Yooralla, but certainly is to 7 individuals on the DSP, pro-rata approximately $450 per client. The possibility of misallocation of funds was first brought to my attention about three months ago when a support worker told me there was not enough money in the food provision money to pay for my extras. This could have been solved more easily if I was allowed more up to date information concerning provision money…
(I should point out that this piece was read out in June 2015 and our rent was not increased until October 2015.) I also wish to ask a question that refers to the amount of provision money; that is, we only pay 54% of our pension and according to DHS and your pursuit for fairness we should pay 75%? Is this Yooralla’s sympathetic way to tell us that they want to increase our rent?
My complaint on this matter was taken furthered by one of my more recent examples about increasing rent mentioned in my article from John Menadue’s blog, titled ‘The standardisation of services for people with disabilities’ (7 December 2015);
I continue to think about what happened at a recent meeting that was convened by my own “service provider” to discuss with us an increase in rent for residents.
At this meeting, we were told of plans to sell the provider’s prime real estate in the Melbourne CBD. A question was asked about the way in which the provider was viewing this sale. The discussion seemed to be suggesting that the sale could assist the provider in overcoming its budget problems. That was why as a corporation it was considering divesting itself of one of its assets.
So the suggestion was put to the provider that if the building in Flinders Street was being sold for budgetary purposes, a small amount of the profit from the sale could be used to help the pensioners among the residents overcome their budget problems that would accrue from an increase in the rent.
After all, the service provider is keen to present itself to the community as an effective not-for-profit company, and so all of its profits are to be ploughed back into the community it is serving. And residents certainly wish to have their part in this community recognised. They are not merely rentiers; they are constitutive of the provider’s community.
The assets held by the provider are retained by it to enable the provision of a service it is constituted to provide”.
These statements illustrate something about the loss of control that I sense is inherent in my current context. I have put these forward as a bona fide member of the service provider’s community. Membership in a community seems to conflict with the idea that people with disabilities and with high support needs are merely clients who should quietly accept the second rate lifestyle expected of them.
A special thanks to Bruce Wearne, for his mastery of editing and helping to tweak my piece and to Christina Irugalbandara for her excellence in academic support work
Peter Gibilisco, B Bus (Acc) Ph.D. (Melb).
Honorary Fellow University of Melbourne.
New Book: The Politics of Disability
See my web-site http://petergibilisco.com.au/