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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.
You might be able to vision why I have so much hope in my Alke apartment. It is not yet furnished, but my sofa outlines some of the faith and hope that I envisage in this apartment. Although my sight has left me, my colourful couch can outline my faith for a prosperous future with lots of good times. All is coming together quite well and with the hope of a break from lock-down the future looks pretty bright. I have started to become more accustomed to my new support workers and this has helped to portray a ricochet effect on my care.
I have had time to reflect on my disability and its destructive pathways through life’s course. Besides this fact, I am wheeling into a new home that bares the brunt of a new life with new people and new contacts, plus satisfying my love for Greek food. I have an outstanding group of people to help me with my care from Nightlife and the new sense of control and a five-star apartment courtesy of the Summer Foundation. My new apartment is located in the heart of Oakleigh surrounded by ‘ypérocho’ Greek restaurants.
Thank you to Daniella for her care and courtesy in helping me to write this blog post
This article was a copy of my original appeal to the NDIS
I look back on the last nine 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, nine 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 resident with support that maintains the good things that have previously been a part of a life already constrained.
For example, this can be summed up by the following:
ACE DISABILITY SERVICES – We are here to give independent and fulfilling lives to people with physical, intellectual and multiple disabilities.
Lovely slogan isn’t it? But then reflect upon the efficiencies that are required in shared supported accommodation like my own. And now look carefully at that phrase: people with physical, intellectual and multiple disabilities. I am not here criticizing the ethical intention; I am trying to draw attention to the inner organizational chaos that will result for workers and residents if a facility conflates physical and intellectual disabilities. And who can tell how care for those with “multiple disabilities” can emerge in the midst of such organizational blurring?
There are many residents, perhaps an overwhelming majority of up to 80%, in supported accommodation with some form of intellectual disability. Therefore it can be expected that in shared supported accommodation like the place where I reside, that a policy of taking on such high demand people will simply result in a standardization of disability care by service providers who enlarge their clientele to include non-intellectual disability persons.
And don’t get me wrong! Such people are also my neighbours and deserve proper care. But when people with different kinds of disability are being cared for together in the one facility there is a risk that there will be a standardization in the deployment of staff and resources to residents. I can understand why this will be so in organisational and industrial terms. But I am suggesting that the authentic efficiency of any one facility’s operations must not ignore the different outcomes that are needed for all residents. An abstract “equality” can easily miss individual care needs and outcomes of all residents. How is this relevant for the NATIONAL DISABILITY INSURANCE SCHEME? As part of my answer to this very important question, let me take this one step further by describing my recent problem.
Being 58 years old with Friedreich’s Ataxia, I am left in a position where 90% of the time I am staring into four blank walls. It is a truly frustrating problem. How can anyone truly understand my challenges? I suffer from nystagmus, a condition of involuntary eye movement that results in reduced or limited vision. My eyes are perfectly normal and they are deep blue, so people will never think that I am blind. But they continually shake, creating extremely blurred vision. These frustrations when combined with other grievances outline a systematic failure called Friederichs’s Ataxia. Of an evening I am in need of active personal night for my eyecare and personal support needs, systemic breakdowns such as, the incapability of some support workers to understand my slurred speech has a negative affect for my wellbeing. Apparently, due to some cost benefit assessment neither Yooralla nor the NDIS can provide for these needed supports. Besides blindness I have severe dysarthria, a motor speech disorder, which destroys my efforts at communication. My overall mobility has progressed since I was a baby overcoming an early childhood tendency that meant I would crawl on my backside.
These are the “disabilities” that have been delivered to me, but I have always tried my best, and maybe once in every fifty attempts at whatever it was I have been trying to do, I would “hit the nail on the head”. All the pleasure would be mine. But reaching the age of 25 I have had to accept that hammering nails was not going to be part of my life!.
My need to live independently is evident from all of my life’s pursuits. Presently, up until a week ago I was a PhD supervisor at Melbourne University, and was hoping such a role would have its domino effect. But due to the chaotic stimulus provided by Friedreich’s Ataxia the opportunity that could have provided me with a new hammer has now left uneven pathways through life’s coarse. However, Independence is something I need and something I have struggled to express for 35 years. Am I not entitled to expect and hope that there will be something in return for all of this effort?
Firstly, I would like to thank my brilliant ghost writer and friend Bruce Wearne. Secondly, my beautiful and talented academic support worker Daniella and also I would like to thank my brilliant and lovely academic support worker Amanda.
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.
This is an excerpt from Marjorie Aunos’ presentation, a keynote speaker at the Virtual Disability Conference 2020:
International research reveals an over-representation of parents with intellectual disabilities (ID) in the child welfare system. Over five decades of research demonstrates that external and environmental issues, such as poverty, untreated mental health issues, domestic violence and lack of adapted and adequate support, have a far more reaching effect than the intellectual disability per se on parenting capacity. Intervention studies have clearly demonstrated that parents with ID can parent effectively or acquire the necessary skills when provided with the right supports. In seeking such support, parents with ID have good reason to be cautious. The threshold for entry into the child welfare system for parents with ID tends to be based on pervasive and entrenched pejorative assumptions and sometimes unsubstantiated concerns. Moreover, when they enter the system what is offered to them as a family is commonly not evidence based and woefully inadequate. Rather than the system taking responsibility for failing these families, it tends to project its failure onto the parents and more specifically their ID, blaming them for not engaging, lacking insight, being uncooperative and resistant and/or incapable of learning and changing. So then, should we be talking about complex needs of these families or should we focus more on the complexities of their life circumstances, their family relationships and relationships with formal services? This keynote will emphasize the ways in which parents, service providers and natural supports can work together in order to maximize self-determination of parents with ID to promote family quality of life.
Below is my presentation and commentary for the Virtual Disability Conference 2020:
Thank you, Marjorie, for your thought-provoking presentation. I would like to start off my presentation with an introduction to myself and a brief look into Ableist conceptions.
Friedreich’s Ataxia does not affect my intelligence, but many working in the disability sector act as if they do not believe this. But the reality can be highlighted by my academic qualifications, which are a double degree from Monash University, Master of Arts from Monash University and a Doctor of Philosophy from University of Melbourne. My PhD was achieved late into the progression of my disease, when I was 43 years old. Many say to me that this was a huge achievement, and I am aware of some taken-for-granted 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 told I would obtain a PhD! 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.
However, there are many degrading effects to be battled with, such as blindness, very poor speech, hearing impairment, 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.
Evidence suggests that identifying as to whether children receive sufficient support is often poor and based solely on the presence of the parent’s intellectual disability. It has been identified that parents with intellectual disability meet with a presumption of incompetence that too easily leads to their child being deemed to be at risk of harm.
There is a possibility that some parents with intellectual disability may disregard their child but it is not clear whether children of parents with intellectual disability are at greater risk than other children – particularly given the variation in the extent of intellectual disability and the impact it may have in a broader sense.
There are many other factors that will influence a parent with an intellectual disability’s capacity to provide adequate care to their children. Such factors are in abundance for parents with intellectual disabilities to provide care for their siblings. These problems may be instilled by unimportant issues associated with parental intellectual disabilities which are intensified by other challenges that make parenting difficult, such as poverty, unemployment, social isolation, stress, and relationship difficulties.
Such broad factors associated with the above include:
- parental stress
- social isolation
- parental physical and mental health problems
- children with physical or mental health problems, behavioural problems or disability
- demographic characteristics such as parental income, education, and employment status
- parents with past histories of being abused or neglected as children
- parental substance abuse and
- domestic or family violence
In contrast these are some of my personal thoughts from an article from Online Opinion titled ‘Itches and Scratches – Living with Disability’. I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich’s Ataxia. Firstly, I would like to draw attention to the fact I have achieved a PhD besides the degrading affects of this disease, I have continuously been told I am stupid, but the facts are out there for everybody to see. I’ve been attacked by this progressive disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need for empathetic behavior from those directly related to disability.
In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You’d have to say that my life, with the progression of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled people have to continually and progressively confront.
In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools and resources that are outlined in just policies.
And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched.
It struck me that in both my and Majorie’s presentation we overlooked some of the overall answers. As with most disabilities there is always an alternative option, which needs to be looked at with due respect and not discarded due to stereotypes. Such as I have been pitied, conveniently verbally misunderstood, looked down on for my supposed abnormal structure and characteristics, and characterised as a loser. The social model of disability by contrast challenges this stigma and discrimination. The social model has the potential to roll back societal prejudice and misguidance and support “People with disabilities” to attempt and possibly achieve their goals free of harassment stereotypes and discrimination. I believe, the social exclusion of people with disabilities occurs because most people are still operating from the medical model of disability. They have not been exposed to the social model of disability. My successful completion of a PhD is proof of the veracity of social model of disability.
Firstly, I would like to thank my brilliant ghost write and friend Bruce Wearne. Secondly, my beautiful and talented academic support worker Dani.
Transparency International says the following about the Corruption Perceptions Index 2019: “The Corruption Perceptions Index ranks 180 countries and territories by their perceived levels of public sector corruption, according to experts and business people. This year’s analysis shows corruption is more pervasive in countries where big money can flow freely into electoral campaigns and where governments listen only to the voices of wealthy or well-connected individuals.”
In 2019, Australia received a score of 77/100, showing little progress towards anti-corruption over the past few years: read more about Australia.
Over the past few years, and especially in the last few months, I have been reflecting upon my experience of shared supported accommodation. Some experiences I have encountered within the service provision has developed a distinctive grey area. My own thinking, trying to get these events in some sort of focus, has mainly been done from my perspective as an individual pragmatist. I live within an environment where, in order to survive, I am dependent on standardised practices.
I wrote and published this article on OnlineOpinion over 11 years ago. It is troubling to me that nothing much has changed over all that time.
I am still trying, even though I’ve got 1/4 of the abilities I had back then in 2008. That means now, I am constantly pushing the boundaries of my remaining abilities to speak against injustices. I want to achieve so much in a personal, social and academic sense and all I ask is to be given the opportunity to do so.
The adjective bipartisan can refer to any bill, act, resolution, or other political act in which both of the two major political parties agree about all or many parts of a political choice. Bipartisanship involves trying to find common ground, but there is debate whether the issues needing common ground are peripheral or central ones. Often, compromises are called bipartisan if they reconcile the desires of both parties from an original version of legislation or other proposal. Failure to attain bipartisan support in such a system can easily lead to gridlock, often angering each other and their constituencies.
Under a Bipartisan approach, in Australia’s two-party system where both parties are ideologically opposed, we have the socially and economically conservative Liberal/Coalition parties and opposed to them is the egalitarian approach of the Australian Labor party who can both agree on the need for the NDIS, however, they are both ideologically opposed, in how to get there. Continue reading “THE POLITICS OF THE NATIONAL DISABILITY INSURANCE SCHEME (NDIS): BUDGET, WELFARE & INSURANCE”
Readers might assume that this title is the introduction to a humorous piece but believe me what I am writing about is no joke. The “dunghill” I write about is the “provider” of the facility in which I live. I am provoked to write in this angry tone because of the strong impression I receive in the responses from “those above”, those in charge of my residence, are excessively calculated, constrained by a mentality in which a cost benefit analysis has precedence. To treat people through a sieve of costs and benefits is something I have come to hate. Continue reading “EIGHT AND A HALF YEARS ON A DUNGHILL”