My life has unfortunately been soured with Friederichs Ataxia. This foul disease has been busily participating in everything I have done including every wrong action that I have initiated. The thing that really annoys me is that I have an undying need to promote goodness, and this disease sours all my good actions. And by whingeing about it seems it is my only chance to challenge the bitter taste it brings, promote the good, and make life just a little bit sweeter.
However, you may well ask me: “So, what is good in this situation? How can you say you want to promote the good?” I recognize that such a question comes from a position that is so blurred because not many people can relate to this kind of whingeing agitation. By then I have come to the view that writing about it is my only source of redemption. And in the public arena of disability, the fate that is assumed to dominate my life is a stereotype so hard to bear, almost much worse than the reality of Friederichs Ataxia itself.
So, why is the promotion of good so soured in the field of disability support? My thinking on this question has developed as I have lived with Friederichs Ataxia for most of my life. It has recently intensified when I moved in to live within as a part of a shared supported accommodation regime. Disability is continually placed in a too hard basket; of course there will be variations, depending on the kind of disability we are talking about and its consequences for a person’s everylife and care. There are so many different kinds of disability.
And here’s the thing: why are they always so standardised? Why do we as a society try to put all the different forms of disability into one basket? By doing this, overall social policy generalises across many ailments and develops standardised processes. I suspect that this standardising arises from the development of social policies that are aligned with a rigid application of cost benefit analysis. And so the costs of care, and the need to keep costs down, becomes a very prominent, if not too prominent part of developing policies and the great variety of disabilities somehow gets hidden from view behind the term: disablity.
So this is my suspicion, borne out from many years of experience. This is part of the failure to see the reality and to consider “disability” from behind standardised practices. The appropriate processes to deal with individual cases gets lost in the meantime. With such an orientation it is so very difficult to pinpoint the incorrect processes that are in place. Care is offered by a system where efficiency dominates, and leaves little room for effectiveness. My life is continuously constrained by ineffective service that arises from within the disability sector because carers are constrained from acting on their own initiative to address some persistent need of the person cared for. Consider the following case:
The inactiveness of disability care
“The case of an Adelaide woman who died after being left by carers in a cane chair 24-hours-a-day for a year shows the community still does not value people with disabilities as much as it should, advocates say. They say neighbours and carers should have raised concerns with authorities before Ann Marie Smith died last month. Ms Smith, 54, died on April 6 of severe septic shock, multi-organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy.”
She had not left her home in upmarket Kensington Park for “a number of years”, SA Police said.
Her death, which Detective Superintendent Des Bray described as happening in “disgusting and degrading circumstances”, has now become the subject of a manslaughter charge for the sole carer.
“As neighbours and as carers and family members, we all have a role and a duty to make sure that our vulnerable people are really well looked after.”
My life at present
My life has been sadly withdrawn through progressive blindness and what I believe is becoming a total body shutdown. I struggle to find a truthful answer of why this is happening to me, that pleases me. I am an intelligent man who requires more than weasel words rearranging the truth or even not spoken about. But I am a recipient of care in a caregiving situation where the truth is at times hindered by demands that are placed upon a caregiving role. This role is one that really frustrates me, simply because I am not told the truth. Support workers are often scared to hurt my feelings, but then again what is my depiction of the truth? Is it merely my depiction of reality or a misguided lie? In this case, should we just find a situation that can best deliver a pseudo genuine answer or should we go further? And so we come to the difficult but necessary question: what are the costs and the benefits involved in this truth-telling process? How can we look to a future that in truth provides nothing but a saddened reality? So, what is the truth?
I need to start a new life in this new place but how can I do this at my age and with a severe disability like my version of Friederichs’s Ataxia. A disease that has hindered my life so profoundly but has left me with the will to still achieve. I am still trying to play the best hand with the cards that I have been dealt but today I am playing them against phenomenal odds. Let me give you an example of this from when recently I had an appointment with a neuro-ophthalmologist at the Alfred Hospital. There I was when they told me that my nystagmus, my involuntary eye movement, was so bad that the connection to the optic nerve was jittering so much that my eyes will eventually lose contact with the optic nerve. That’s what I have to live with; memories of what I used to see in the sighted days of my past.
Today I live in a brand-new apartment, which I was indeed lucky to receive but having got this apartment was no easy feat. The dilemmas I have faced to receive this apartment may in my case have been surmountable, but am I patting myself on the back to say they were definitely enough to make most people look elsewhere. For example, after I had received most of the needed confirmations to grant me the apartment, there was still the SDA grant approval, which at first was not very favorable or encouraging. The apartments were meant to be approved initially in October/November 2019 and word about this was not received until April 2020. Initially the SDA told me I needed to share an apartment but given my circumstances this was impossible. Luckily the SDA allowed me room for an appeal and this I did, so today I am speaking from my apartment in Oakleigh. The apartment is all mine and rather luxurious, for this I pay a minimal rent of 25% of my pension and now I have finally got a good deal with the NDIS, but still I ask myself: is this a case of too little too late?
Thank you to Dani, Amanda, Lina and Sarah for being beautiful people in their assistance of me in finishing this work. A big thank you to Bruce Wearne in all his work that has helped bring me to this stage.
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.