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A Personal Despair

My name is Peter Gibilisco, I am 62 years old, and today my life is heavily influenced by Friedreich’s Ataxia. It is a progressive condition that not only increasingly restricts physical movement as time goes on, but it does so in a way that is often unbearable. It has many other debilitating impacts, such as blindness and the horribly devastating effects of hallucinations. Hallucinations have, at times, transformed my life to a massive extent. Under their impact, I find myself believing that there will be practical outcomes that will result if I endure times of unbearable torture. Such times have been dominated by my physical and mental pain, which are also a side effect of my condition and of these hallucinations.  

Surely hallucinations can vary, but for me they mostly consist in memories of previous actions. My hallucinations began around the time I was 55 years old. It was for me very much a prescription into fun and games. They could become erotic pleasures which, for me, was still possible. The advice I received from the psychiatrist of the Crisis Assessment and Treatment Team (CATT) at that time reminded me that I was still responsible, the one in control of my hallucinations. This made me feel good, even like I had discovered something of value, but unfortunately nothing could be further from the truth.  

Back then, when I was 55 years old, I still had my eyesight, which could be part of the hallucinatory fun, and my sense of the pleasure I was having. But today, because of my blindness, the hallucinations lack what was a vital element and any pleasure is replaced by a sense of confusion. Everything is turned upside down. These days when I am hallucinating, any control I may exercise over the experience leads me into some truly weird paths, raising problems that defy any solution. I am left feeling very confused. To strive for answers to this situation that turns everything “upside down”, when I know that no probable solutions are available, makes me wonder what such life with such crazy experiences all about is. Am I a recipient of something special here, or what? For me, these times have only been the latest initiator of times of despair, leaving me in deep personal pain. 

   

The likelihood that I cannot communicate about this weird state of mind leaves me spiritually exhausted with no way of finding a solution. The erotic side of my hallucinating has now receded, and I no longer have the feelings I had when I was 55 years old. Being left with no mobility throws a further spanner into the works, confirming my suspicion that I am no longer a member of society. When these hallucinations began, the CATT’s advice was influenced by a medical assessment of Friedreich’s Ataxia. And it was hard to find suitable cases in Australia of people who, of similar age and similar medical problems, had experienced similar problems to what I am going through. I seem to have been left on my own with this even though I have this small capacity to compose what has been written above. 

However, today because of my blindness, a new spin has occurred from my hallucinations. When I was 55 years old, I used to be able to visualise with my hallucinations as they were not a hundred percent clear, and my hallucinating imagination was able to see others walk through objects around me. This gave me a weird feeling, and I was aware that it was something no one else could see. So how do I explain this to my support workers? Now taking it one step further, how do I explain the current situation that is with me being blind? A few times of late, I have been caught by my support workers saying, “please stop,” and this raises a very unbearable and almost impossible dilemma for me. 

My hallucinations are something that I have no control over, they are mentally and physically exhausting. However, this leaves me pondering a question. Initially imposed by the CATT team. They said I was in control of my own hallucinations; this allowed me to monitor the thought, to think about it. Can I really be that smart? Am I able to outsmart myself to such a degree? This thought leaves me truly bewildered. Am I left with only a plea for help, a prayer as it were, which is all that I can offer?  

Many thanks to my prolific ghost writer Bruce Wearne and to my special team of academic support workers Sarah, Dani, Amanda and Lina. 

IS IT “PEOPLE WITH DISABILITY” OR “PEOPLE WITH DISABILITIES”?

I used person first language, in my PhD thesis, I used the term “people with disabilities”, and on many occasions I have also used the term “person with a disability”. That was when I was discussing social policy and how in a comparative way to consider a person who, for example, suffered in circumstances that arose from a minor disability, like a broken bone. So, we are dealing with the more general term “people” and the more specific term “person”. That is why, the term “people with disability” as it is so often used when discussion turns to the “rights” of people sounds misleading and incorrect to me.

I have a condition that can be described as a particular disability: Friedreich Ataxia; but this is a bodily condition that in time shows itself in many different disabilities.         

So, my frustration arises when public debate about vital social policies for people who need assistance allows the term “disability” to be used in ways that are confusing. Social policy discussion about disability should not merely be to expressly seek public sympathy but a spur to social interaction in which genuine empathy arises from fellow citizens from a knowledge of what “people with disabilities” are experiencing.  The term, as it is often used, can too easily distract attention from what needs to be understood in an inter-subjective, empathetic, way.

Not all disability can be classified to fit in less dysfunctional disabilities like a broken leg. Such a “person with a disability” looks forward to the bone-mending, where the amputee looks forward to walking with a prosthetic leg and thus no longer being the “person with a disability” that they were previously. Maybe the word shouldn’t be used to describe people in conditions in which they have expectations of “getting better”. I think the term “people with disability” tries to reduce reality for the purposes of “doing something” to help, but in doing so, the help can come with unhelpful language, sympathetic language that lacks requisite empathy.

However, the term “people with disability”, is not only poorly constructed, it then creates a scenario such as using the term “people with a disability” where it can be used as an optional disability. This does nothing for people with disabilities, like me, with Friedreich’s Ataxia. In the case of Friedreich’s Ataxia, mobility is challenged from its onset and progressively becomes nearly impossible. And this progressive aspect of a disabling condition is not only for people with my particular state. The big question then is, what is the difference between “people with disability” and “people with severe disabilities”?

And I then go on to ask myself the question: why does everything seem to continually boil down to language and popular usage? Is it because the simplifying of terminology is seen as a quick and popular way of enhancing social capital, social wealth? There is also the true disadvantage of having to live with severe disability. When you have severe disability, you never seem to be able to reach a satisfying turning point, when things start to “get better”. They don’t. They just seem to relentlessly get more relentless. This does not mean the will is not there, but you are restricted by your disability or disabilities and their progress. The use of the term “people with disability” can be used to abstractly define many disabilities together; but, as I say, such language should be spoken with care because it has the potential to turn attention away from the difficulties that have to be faced by real life people day to day.

For example, when I was younger, I use to play chess, but today I am too blind to play and too restricted with my coordination to function adequately on the chessboard. This is a horrible and disappointing reality for me. Those with severe disabilities experience the meaning of our severe disabilities, and have to live with the ongoing destruction of social capacity and hence the wealth in social interaction that comes (e.g. from a friendly game of chess!). There’s no social capital to be banked from progressively disabled social participation.

So disability is a wide-ranging term, i.e., disability can refer to conditions from a broken bone to cancer to even Friedreich’s Ataxia. However, classifying all such people together as those with disabilities can only be inexact; on its own the classification is abstract. It is the concrete, actual characteristics of a living person that enable us to distinguish one form of disability from another. So, the term “people with disability” can be used in a variety of ways to suit different objectives. For example, one may have severe disabilities but still be capable of competing in the Paralympics. And good for them. Such people do indeed widen the appreciation for “people with disability” drawing attention to the remarkable capacities that have not been “disabled”.

But is it the term “people with disability” that encourages the widening of the organisation of sport for such people? In my case, I have always tried to give sport a try but I could never make it to the athletic stage, not even the “disabled athletics”. I would try all I could, and would even cheat to make it look good but I never succeeded in earning a positive response for my efforts. So, I have just had to learn to make do in my case with what I could do. And although unhelpful language is definitely a problem when I was younger, I used to enjoy being classified as a person with a lesser ability, that was when my disease had not progressed as much as it has today. But today I am severely disabled and I now even see my past is somewhat different way with a different way of applying the “disabled” category. When I was 15, I used to ride motorbikes, but I was not very good, but the thing was I definitely did my best. But now with severe disabilities my perspective has definitely changed. I learned as a 15 year-old to “do my best” and that’s what I’m trying to do here with this essay. It’s the least I can do.

Special thanks to my ghost writer and friend, Bruce Wearne, also many thanks to my team of academic support workers; Amanda, Daniella, Lina and Sarah.

I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

INDEPENDENT ASSESSMENTS ARE THEY WELFARE DRIVEN?

In late February, early March, I was contacted by the NDIA concerning the NDIS Independent Assessment, where the NDIS offered me $150 for the completion of the pilot program. According to the NDIA the independent assessment should take no longer than 3 hours, however, mine took approximately 4 and half hours. Below is an excerpt from an article from the Guardian expressing these outstanding problems (full article found here: https://www.theguardian.com/australia-news/2021/mar/07/backlash-grows-over-independent-assessments-plan-for-disability-scheme).

“The Morrison government is facing growing backlash from the disability community over a plan to introduce “independent assessments” to the national disability insurance scheme by the middle of the year. Under the current process, applicants submit evidence from experts, including their specialists, and these reports are evaluated by the National Disability Insurance Agency. From mid-2021 they will undergo an “independent assessment” by an allied health professional employed by one of eight contracted providers paid by the government. The changes have sparked widespread backlash, including from a coalition of 25 disability advocacy groups which this week called for the plan to be scrapped.

They said their clients had expressed “acute fears regarding the risks to their health, wellbeing and access to reasonable and necessary supports”. Labor, the Greens, and the Liberal MP Russell Broadbent have also suggested the change is a cost-cutting exercise, a claim strongly denied by the government. The government argues that people with disabilities and their families are now forced to spend money collecting reports from experts. This has meant outcomes have been inconsistent and too often based on where a person lives or their access to health professionals.

This week the NDIS minister, Stuart Robert, released data showing plans were worth more on average in more affluent electorates in Adelaide, compared with less wealthy areas. The government says the assessments – which will be free of charge and last about three hours on average – will create an easier, “streamlined” process.”

Social Insurance Versus Welfare

The NDIS looks to provide social inclusion and this is provided through an insurance scheme, which has as its goal to provide better outcomes for people with disabilities. It is able to provide for insurance instead of welfare. That is, it looks to enhance opportunities instead of looking solely and abstractly at the first hand obvious needs. With such a utilitarian outlook many welfare recipients will be stereotyped.

The NDIS is structured on the insurance model. This is to ensure social programs are met and empowerment is encouraged. This is quite different from the welfare provision model, and in opposition to its short term needs-based structure

The insurance scheme approach to supporting people is different. Built into its approach is a prudential insurance governance cycle which deals with a set of forecasts of what the NDIS will cost. For this, data will be collected that will validate or change those forecasts.

Presently, there is more data on people with disabilities so they are able to assess their needs better. And so, they will be able to demonstrate the most effective supports for them and will be able to assess if the outcomes differ from expectations resulting from the services provided. They can then make changes accordingly. Insurance schemes are data driven processes. This means that over time it will lead to better, more cost-effective outcomes for people with disabilities and their families.

Welfare schemes aim to minimise costs over very short periods of time whereas insurance schemes minimise costs and maximise opportunities over a person’s lifetime and are more aligned to their individual needs. Therefore, NDIS will reap better outcomes as they invest in independence and participation of individuals and the nurturing relationships of their families and loved ones. It also holds out the prospect of the nurturing of these vital relationships by all involved.

In addition to being data driven they invest in research, for example, accident compensation schemes have been researched thoroughly. Insurance companies have been important sources of social change as it gives the wider community the opportunity to pool in their money towards the amelioration of the lifestyle of people with disabilities. And so, this will ultimately lead to greater social outcomes including a reduction in attitudes based on stereotypes.

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.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

FA, WHAT CAN IT OFFER THE AGED?

I wish to write here in a frank and open way about the way the progression of Friedreich’s Ataxia (FA) has severely impacted the proceedings of everyday life, particularly when the progression is well advanced. I am writing from the standpoint of what those in my profession of sociology would say is “participant observation.” I am using my own observations about my own individual form of Friedreich’s Ataxia to issue advice, to give a breakdown that may assist fellow sufferers and other readers to get a sense of what this condition means. Hopefully it will help in the attainment of an adequate diagnosis to some of the problems and promote forward thinking to have remedies in place before the onset of an advanced stage.  Many of my problems today are severely infused great discomfort, also in little niggling matters.

Here’s an example: one of my major problems is an inability to sleep at night. It is to be expected that when you are in bed at night, all tucked up, you will usually have to move around until you feel comfortable. Not so in my case. My ability to move around in bed has virtually ceased. But at the same time my need to feel comfortable before dozing off has actually increased. I also need to always lie on my side, a posture that is necessary to stop me from choking. You will know how choking is an awful feeling. Recall how when, on occasion, you were having your evening meals and somehow you spontaneously regurgitate what you thought you had just swallowed. You are left gagging and breathless. This action of gagging with breathlessness is a body’s response and it is not only related to digestion and food. For me Friedrich’s Ataxia means that I too easily choke if I am trying to get to sleep on my back. That is why I sleep by lying on my side.

By telling you this, I am not trying to blow my own trumpet. I am only trying to describe the discomfort and the need for careful positioning, warning others with a similar condition of what can be required as the condition advances. As I say, this is a sociologist’s report from “participant observation.”

Trying to attain what I would call a comfortable position leaves me feeling very uncomfortable! I find this totally intolerable state of affairs to be part of what I experience whenever I try to do something that I need to do but I cannot do. When you are in bed at night and lying flat on your back with a desperate need to curl up into a more comfortable sleeping position, this is simply impossible without personal assistance. However, I am writing this to alert people like me what the latter stages of Friedreich’s Ataxia can be like.

THE JOY OF FRIEDREICH’S ATAXIA

So, what am I suggesting?  First, a number one consideration for dealing with Friedreich’s Ataxia is the need for ongoing exercise of every muscle in your body as there will be a time when you will need it to be working as strongly as possible. I know that it is not possible for such regular exercise to strengthen all one’s muscles, or defeat a condition that simply reduces the muscles themselves. But we must always look to adequate compromise by staying as healthy and as fit as possible. For example, rolling in bed at night, this should be simple and common place for many, but it is not possible for most individuals in the later stages of Friedreich’s Ataxia. Friedreich’s Ataxia so inconveniently weakens the muscles you require to perform most daily activities. The amazing thing is, once one problem relating to the later stages of Friedreich’s Ataxia becomes apparent, it then becomes a catalyst for a future batch of deeply irritating problems.

The later stages of Friedreich’s ataxia, for me have reduced my capability to sleep at night, as I am incapable on most times of feeling comfortable enough in bed to doze off. I used to exercise a lot but today it just seems so much more harder. I cannot dispute facts, as time goes on, things only become harder, but the progress of the restrictions brought on by Friedreich’s Ataxia have seemed to multiply alarmingly as the years have dragged on. When you are younger, you are more full of life, even though in most cases Friedreich’s Ataxia will try to stop you from achieving. When you are young Friedreich’s Ataxia is a significant problem, but with aging it will magnify and distort the disability, challenging every biological and interdependent movement the body can make. 

I have just heard about a mechanism that is capable of rolling you in bed. I am in the process of trialling it.

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.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

FRIEDREICH’S ATAXI AND SOME SEVERE ASPECTS OF AGING

My days starts with a smorgasbord of problems arising from my body’s ongoing bout with Friederichs’s Ataxia. I can now do less than ever. Friederichs’s Ataxia has restrained every muscular movement in my body. It’s been a problem for me for decades and is the persistent problem of my life.

Now I cannot even see. And to not see is a blight on my communication. It’s a terrible challenge to my life pursuits. The truly horrible form of blindness is what this individualised mode of Friederichs’s Ataxia has left me.

So how do I limit these problems. Trying to deny the problems will only add to the confusion and despair that this disease wants me to have. So then how do we act? Do we try our best against these overwhelming odds? I look back and see that in hindsight as I have pushed back against the multiple odds, there has been, in many cases, gratifying pats on the back and that in some spirited ways seems to have helped me fulfill life’s journey.

My writings have tried to develop the need for many people with complex disabilities to hopefully find justice in my rants and ravings. People are tolerant and I’m thankful for that. But we also need to take into consideration Friederichs’s Ataxia and its effect on my life. For example, I have the need to tell people but the understanding of my plight and the knowledge of how far I can go will always burden me. Why me? Where’s the answer to that?

I also tend to think that people with severe and complex disabilities like mine are only heard from on rare occasions, so I believe my calls for justice are needed and should be heard. So I continue banging away. Yet, complaints from those with severe disability are rarely heard because when complaints and severe disability progress, they can do so together and, as in my case, that makes it even more difficult to speak (Speak? ha!) up. Having a severe speech impediment makes communication close to impossible, which can and will live on into moments of deep despair.

Communication and People with severe and progressive disability

Friedreich’s Ataxia is the name of my disability which as a name it assists me to call attention to the plight of people with communication problems. All people with Friedreich’s Ataxia struggle with communication problems in their early lives but having Friedreich’s Ataxia at my age creates a significant number of even more complex communication complications. It is so hard for me now because basically my sense of reality has shifted, making me think that speaking up is pretty futile and unable to cope with what is presently happening in the world, let alone in my own body and the immediate 2 inches in front of my twitching nose!

Friedreich’s Ataxia it is so unbearable to focus on the problems and lead a life, but then what do you do if you are thrown into such a messy situation with its transformation of every single one of my bodily functions?

I have spent a lot of time typing articles for my blog, but presently due to blindness and deteriorating Dysarthria I have been left in an this awful black – what-am-i-supposed-to-do-now? – position. Basically, I have to dictate my work to my academic support workers, and this is so hard to do because most, or nearly everybody, cannot understand my contorted speech. Too many people, this proclaims a basic futility, as this is simply the confirmation that I have been dealt a life that is unjust, unfair and unequal and inequitable. How is it, that in these later or are they final stages of Friederichs Ataxia I am to go on living? I wonder if I am living through the antithesis of what is normal to most of society.

For example, on what basis can you judge a person, if that person cannot be judged because they cannot communicate their views? This is the big problem many people with Friederichs’s Ataxia in the later stages are faced with. It is definitely, not a simple problem, but rather a complex problem, with no simple solutions.

It is so off the edge to have Friederichs’s Ataxia in these later stages. Most people who have to live with this cursed Friederichs’s Ataxia only systematically live not much beyond the age of 40. So, if you are of the age of 40 there is only a limited number of places to go, and a limited number of days left. But I passed that milestone years ago. I have even gone passed the half century. Friederichs’s Ataxia unfortunately lives on, but most are enticed by this life-sucking system when they are young adults. But there is much more to Friederichs’s Ataxia than being a young adult. Friederichs’s Ataxia has the capability to progress to a severe and horrifying state, like mine.

Dear reader, I have just typed this up. Will you think it is nonsense? But it is a problem I have stumbled upon. I hope it sheds light, some light, for you. Please indulge my efforts and try to cop this as the outcome of my efforts to still try to make sense, even of this senseless disease.

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.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

THE PARADOX OF MY LIFE

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.”

(Source: https://www.abc.net.au/news/2020-05-16/degrading-death-shows-communitys-devaluation-of-disabled-people/12254722)

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.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

MY NEW HOPES AND DREAMS

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.  

MY NEW LIFE OF CHOICE AND CONTROL

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

AN APPEAL TO THE NDIS: HOUSING & SDA OUTCOME

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.

The book can be purchased from Amazon as a paperback or in kindle ebook format. It can also be purchased from Foyle, or Fishpond for Australians.

You can also order directly from me.

 

Complex needs or complex circumstances? The life situations of parents with IDD

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.

Ableist Conceptions

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.