Under the current disability support system that I am a part of, my support provider receives a sum of money from the NDIS, known as the ‘SIL’ (Supported Independent Living). They may have been allocated quite a large amount of money, but as I experience it they treat me in a very flippant manner.
My support provider has a history of believing they know better than me about what care I should be receiving. Yet, as I perceive it, the underlying motive behind management’s belief about what they provide to me is based purely on a cost-benefit analysis.
This is why I feel that I have been pushed into a living situation that puts me “under the pump” in an invidious way. To be frank, I find it unbearable to continue to live this “failed regime”. Management have instructed their support workers to stick together in groups of two when they come to see me: I have always been critical of this procedure. It may be in compliance with a certain mnagerial interpretation of “best practice”, and it may even be a result of union demands in enterprise bargaining. But I feel that it limits my interactions with them since it seems I am being spied upon. In my seven years at this residence I have formed the view that the two carers have been instructed to ensure that I comply with management’s requirements as if I am at the end of a chain-of-command. Therefore, everything I say and do will be relayed back to management, and in most cases, misinterpreted by them. The point is that the carers are workers who are accountable to their line managers. It seems strange to have to point out that I am not a worker and so I am not accountable to management for my conduct. The relationship is different.
Let me give a bit of background about me and my particular disability. Friedreich’s Ataxia does not affect my intelligence. However, many working in the disability sector act toward me as if my speech impediment means an intellectual disability.
I can only guess what the make of my Masters and Doctoral qualifications, the certificates of which hang on my wall. They must see it as some kind of mystery, even a miracle.
My PhD was achieved late into the progression of my disease, when I was 43 years old. Many have said to me that this was a huge achievement, and it is one that I do not take for granted.
I am deeply aware of some misunderstandings about Friedreich’s Ataxia. At the time of my diagnosis when I was 14, medical specialists told my parents that I ‘would not live much beyond the age of thirty’. One can only imagine their response if they were then to see me now – 57 and still going.
These days, I still perform research and Melbourne University gives me honorary fellow status. I have written and published over 100 articles and currently have now authored three books.
Despite this, there are many debilitating factors that are to be battled. Friedreich’s Ataxia is a progressive disease, and as such, I have been confronted with the gradual loss of sight, speech, and hearing. Along with this is also a poor heart, and limited mobility and coordination.
But in all spheres of life, I’ve always tried my best; the jury is out, but there is still some chance that my writings may create positive change for people like me.
So this brings us to the question: is it fair that I live in a system that tries to control my life, and the way I want to pursue the things that give my life meaning? Do I deserve to be monitored at all times by two support workers?
Let me go a bit further with some empirical evidence of my own. I tested out a theory I had. I told my support workers something about management, and I specifically told them “do not repeat this to management”. And lo and behold, the following morning, I was visited by management in my room, and questioned about what I had said. This has happened on more than one occasion.
I believe that there is more going on in my management than meets the eye, at least more than meets my eye.
Consider once more, the aforementioned incident with the two support workers relaying our conversation back to management. Now, let me explain why this entire situation makes me feel uneasy.
As I mentioned earlier, Friedreich’s Ataxia has hindered my ability to adequately communicate. In previous written works, I have made known the importance of my ability to communicate. I have stated many times that communication is the nucleus from which I attempt to attain my goals.
One of these goals then, is to form genuine human bonds with my support workers. I consider these people to be my friends, and sometimes even family. So you can imagine how difficult this becomes when managerial procedures makes me question the motives behind their actions.
What bothers me even more about this, is how the situation has been handled by different authorities. I have spoken to management and several other stakeholders in the disability community about this. A legal authority within the disability sector believes that my complaint about the two support workers does not fall within the scope of privacy matters and believes this must be furthered by the Royal Commission.
I value my interactions with people. I enjoy engaging in conversations, whether they are intellectual in nature, or if it is simply about music, or where to buy the best coffee in Melbourne. However, If there are two support workers present, I simply cannot carry out a conversation the way I’d like to, because I cannot trust their intentions. It heightens my feelings of uneasiness and insecurity, and this only burdens my ability to communicate even more.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, Christina Irugalbandara whose work means so much to me and Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least Mercy Ndegwa who’s continually teaching me how to be a better person.