The Definition of Determined

Peter Gibilisco has spent his life advocating for the inclusion of people with disability in Australian society. Gibilisco is this week’s Changemaker.

At just 14 years old Dr Peter Gibilisco was diagnosed with Friedreich’s Ataxia, a disease that causes degeneration of the nervous system.

Forty years of living with the condition has meant Gibilisco is required to live in shared support accommodation, an experience that he says negatively affects his life.

Despite his disability, Gibilisco has obtained a PhD in sociology from the University of Melbourne and has published two books, including The Politics of Disability.

Gibilisco wrote his responses to the following questions with the assistance of his academic support worker, Christina Irugalbandara.

If he was to write it without any help, by his own most optimistic assumption, it would have taken him more than 24 hours to complete, if he was writing nonstop.

As this week’s Changemaker, Gibilisco shares his personal battles with a serious condition, what he thinks needs to be considered as the National Disability Insurance Scheme is rolled out, and what changes he would like to see in the disability sector within his lifetime.

While Australia prepares for the full rollout of the NDIS, what do you think will be the most important issues for the disability support sector to consider?

The potential benefits for developing such mutually beneficial partnerships are substantial. The flow-on will be to all those in society who are indirectly and directly related to disability. For example, there is an unlimited possibility for the transference of abilities, which will create a new potential for people with different abilities and support workers in a dynamic, merit-based society.

The synergistic outcomes that can flow from this form of flexible support can be demonstrated through my own (unpaid) work output. Synergy is a term that is popular in Human Resource Management these days. Simply defined it means that the whole is greater than the sum of its parts, i.e. one person plus one person equals three (two persons plus what they bring out in each other in their relationship). In my case the synergistic partnership I have with my support worker allows me to flourish in my role as a disability activist.

For example, the synergy that is provided to me through the intervention of flexible disability support provides me with the means to achieve many of my goals in life. This approach to personal care is cohesive and flexible and humane. It allows me to manage the complexities of my life and desires. It helps me to attain my full human potential when and where my bodily abilities are lacking.

For example, my progressive illness creates a deterioration of motor skills, which leaves all my physical attributes severely disabled. However, I am still able to perform research and write articles and even, I may say, at a significant rate beyond that of many paid workers in the disability sector. Basically my performance is created through the synergy gained mainly through my work with my support worker.

This synergy explains the transformation that takes place in people with such different abilities and support workers, where the mutual benefits that occur, will provide for a more proficient and humanly thoughtful disability sector, providing for a more inclusive society. Synergy becomes a fundamentally conscious event, which motivates, transforms and unifies all of life with a concerted and organised combination of such people of different abilities and support workers. This then, in my view, is the path to unify and enhance the disability sector.

Synergy for people with different abilities and support workers is about life chances and the creation of opportunities. Therefore, the essence of synergy is to value difference.

Can you explain a bit about your personal experience with disability?

My life to date has been unduly constrained by the enforcement of standardised practices and official policies designed to uphold the primary care of people with Friedreich’s Ataxia. I was diagnosed with onset at 14. Now I’m 54.

This is a progressive disease, causing impairment to the nerves, and so a failure of timely muscle reactions throughout my body. The messages sent from the brain via neurotransmitters are slower and weaker than they should be. In turn, muscular growth is hampered, giving rise to severe deformities, limitations and other problems. For example, I have had to deal with severe scoliosis and cardio-myopathy. By 23, I was reliant on a wheelchair, but now I’m simply too uncoordinated (unco) to make use of an electric one. As you may realise, the condition also leads to severely slurred speech, which by the time I was 40 meant my communication was also seriously impaired. Of late, my eyesight has been deteriorating, adding to the challenges that I already face (Gibilisco 2014, xxiv-xxv).

My only apparent initial physical abnormalities were the appearance and uncoordinated gait of a drunk, but I quickly became expert at hiding such frailties. But I was never without friends and was never, to my knowledge, made fun of by school friends and peers.

When I was 18 my mother died of cancer. This was an emotional time and my disease temporarily took control of me, leading to a physical and emotional downward spiral. But fortunately the closeness of family and friends helped ease the pain. They helped me to achieve some form of self-esteem and to maintain pride in my life.

At 23 I had a life-changing experience involving a trip overseas with my cousin. Things got a bit wild there and a bit mischievous with the opposite sex. I ended up back in Melbourne’s St Vincent’s Hospital in Fitzroy. While in St Vincent’s, at about the time of my rehabilitation from hospital to home, I started dating a beautiful young nurse. This allowed me to spend the weekends out of hospital and to pursue my utopian dreams of an existence with an attractive lady.

Soon after I got out of hospital I went into a wheelchair permanently, but life also showed me a more promising side. The beautiful nurse and I decided to move in together, possibly to see how far we could bring our relationship. After six months of living together we got engaged. However, for reasons related to my disability, the engagement ended six months later. Today, I can look back at what was and how it ended and, in hindsight, I realise what happened may have been for the best!

I believe one of my greatest failures in the relationship was my inability to create a future for myself. I was not living a life, I was living a fantasy – a fantasy based on false expectations. But was the fantasy all my life could be? Is it a fantasy to believe you can maintain a relationship while in a wheelchair with a degenerative illness? Could I change things?

But the progression of my disability was still devastating to me in terms of how I could involve myself in life and, it seemed, that an extremely broad range of life’s pursuits were simply beyond my reach. In 1988, when I was 26, neurosurgeons at Saint Vincent’s Hospital [performed[ a Scoliosis operation [on me]. The operation would stop my spine from bending over and squashing my heart. I only had a 50/50 chance of recovering from an operation that was deemed necessary. They told me this because they believed my poor heart condition coupled with the intensity of the operation, would mean I might not be able to survive the anaesthetic. But for whatever reason I’m still here today. This seems totally unrelated to my disability but as we can learn from Friedreich’s Ataxia no bodily dysfunction is unrelated to other ones; the human body is inextricably interrelated.

In an attempt to drive home my feelings on this, I will reveal something about myself that I have previously made public. I was diagnosed with Friedreich’s Ataxia at 14 and in these 39 years, with this severely progressive disability, I have been no stranger to inter-ability relationships. But finding the right person to be able to handle me and my disability has been difficult.

That has been hard enough; how I am also to deal with the demeaning and deplorable stereotypes held by many in our society? Such attitudes, I believe, continue to make it difficult for me to create, develop and sustain the kind of a relationship I would want to develop.

I do not have a complete philosophical account of why I enjoy the chance or fulfilment of making love. Well I guess it’s because I am a human.

Maybe, for starters, this is one form of human pleasure I am still capable of performing. I mean that in a holistic sense. While my abilities of performance may be dwindling, and on a level of consciousness that is distressing, my ability to love has increased.

And for the life of me I don’t see why I also have to combat the utterly ridiculous stereotypes of some. Despite the dumb thinking and incoherent logical responses of others in relation to this matter, I certainly don’t have a cognitive disability. This means that I would respect myself for my knowledge.

But, like many stereotypes, this perception is to some degree an inescapable societal reality. But it’s not a fact, only the fulfilment of social misguidance.

How difficult was it to obtain a PhD from the University of Melbourne and write two books while managing your disability?

It was so bewildering for me to be there, it was so haunting; so many big, lovely buildings and just me in a wheelchair, confronted by this.

(My) condition … leads to severely slurred speech, which, by the time I was 40 years old, meant my communication was also seriously impaired. When I finished my PhD, there was a demand for speaking at conferences, but I never could. I used to have someone else read out my papers. It was hard for me to socialise and make connections within academia because of my slurred speech. This also resulted in people thinking that I had a cognitive disability, and hence treating me in that way. Therefore, I have to rely heavily on typing, but this is difficult due to my typing speed of 1-2 words per minute. (Gibilisco & Vogel, 2013)

It’s as if after graduating with my PhD, and then in 2007 when I was presented with the Emerging Disability Leader of the Year award, I developed a new itch, but just didn’t know where so it could be scratched. My PhD thesis, my academic journal articles and my On Line Opinion pieces were all being applauded but, somehow, the major issue I was trying to discuss was being ignored.

I think public policy towards people with disabilities, and in particular severely disabled or progressively disabled, has ignored some important factors to the detriment of our society.

First, I will sound like a broken record by offering my analysis over and over again; and second, our society cannot be, or become, the compassionate solidarity it claims for itself if it doesn’t hear what I am trying to say. I have a sense of obligation here to speak out. It’s not just for me, although I am painfully aware of its application to myself and to my own situation.

The point is this: for some of us the special consideration, equal opportunity and affirmative action, designed to get disabled people into the mainstream, paradoxically brings us to a more exposed and needy situation. This cannot be addressed without more special consideration, further and ongoing application of equal opportunities after training is completed, and further affirmative action once we have obtained our qualifications. It is a simple point that can be readily illustrated.

This illustration of policy dynamism is based on the approach I have identified as pragmatic social democracy, advocated by Hugh Stretton and Marta Russell, in my doctoral dissertation.

Once a person with a severe disability at TAFE, for example, receives a diploma then society’s responsibility to that person is not somehow fulfilled, because at that point the obligations have actually increased. The person may need special support to attend interviews, and when that person is offered and accepts a position of employment it may be necessary for technical and other assistance.

I could repeat this point for each of the steps I have made through my own higher education: TAFE Diploma, Bachelor of Business, Bachelor of Arts, Master of Arts and Doctorate of Sociology. There are other facets to keep in mind as well. Somehow we need to find a way to view and support people with a disability in proactive methods of equal opportunity; rather than focussing on the medical model’s view of a sympathetic approach: people with severe disabilities need an empathetic approach, aligned to the social model. My assertion is that society’s responsibility increases in specific ways oriented to professional commitment and involvement, once the student with a severe disability graduates.

But, as my own needs, and possibly those of others, have increased or are increasing, support is not only to be seen in educational terms. The dynamic of increasing support reflected in policy should also seek to meet the increased needs which the policy at an earlier point has also helped to bring about. There are also increased needs of those who support, as well as the increasing needs of the person with a disability.

And so, in hindsight I can acknowledge such flaws in my existence, but what is right and what is wrong? The answer is blurred just like reality.

Your life story is full of difficult moments. What is it that has given you the strength to continue striving to make a difference?

Personally, the gradual and insistent progress of my disease, Friedreich’s Ataxia, has created a system of social exclusion. Of course, there have been many enriching and fulfilling occasions that I have shared with people. However, the horrible and despicable times certainly have occurred much more often than the good. Some individuals, out of the frustration and disbelief of seeing what I have to put up with, ask me “what is your point of carrying on with this existence?” I reply in a similar way to most people “I proceed in the hope that maybe one day there will be a reversal of fortune, and I will be able to share in more good times”. Further, I am motivated by the belief that my work can contribute to changing this situation for people with disabilities generally.

The following example highlights the paradox that may prevail when we have too much of one model and not enough of the other. In 1987, a friend of mine with Friedreich’s Ataxia, the same disease I have, was to be married to the man of her dreams, an able-bodied individual. However, as she signed the register, she got too excited, had a heart attack and died. The wedding was a beautiful moment, and the embodiment of the social model, in particular, allowing for the full participation of all people in a social activity. In hindsight, however, what should have been done medically, and what was to prevent the heart attack, remains the domain of the biomedical model. In other words, it is the interaction of the medical and social models that is important. The challenge of the present period is the dominance of the biomedical model.

However, such an achievement is mundane compared to my success in academia. Through my faith, dedication and understanding of the social implications of attending academia with a severe disability, I have achieved this, even though some of my physical abilities are severely reduced from those of society’s so-called norm. For example, presently I type at a speed of one to two words a minute.

Against all odds, people with disabilities can achieve social success, as I believe I have.

Comedian and journalist Stella Young famously fought against the idea of people with disability being held up as inspirational by non-disabled people for simply living their lives. What is your view on this issue?

I knew Stella and admire her views and can only do and be what I think is right.

What issues affecting people with disability in Australia would you like to see rectified in your lifetime?

The State Disability Plan is not the only endorsement of the need to emphasise the individualising of care for people with disabilities. We now hear of a profound development – person-centred planning is said to be the worldwide benchmarked best practice. This involves a highly individualised vision of the person with disabilities and the result is that care needs multiply into a kaleidoscopic variety of individually generated special needs and concerns.

This attempt to generate a sensitive and compassionate approach nevertheless faces an ongoing dilemma. The costs associated with such an approach to provision of disability services continue to outstrip the services that can be provided by the pension. Moreover, the demands (and possibly the false needs as well) that are generated by this latest example of neoliberal micro-reform of the “disability workplace”, has the effect of further transforming the already precarious environment for care-worker and the client.

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”.

What do you consider to be your greatest achievement?

Receiving my PhD; to have control over my own life. Today I live in shared support accommodation which negatively affects my life, placing immense strain on my personal control. Hence, I am imprisoned by their standardised procedures. The political economy impedes people with disabilities, and what I found through my research closely matched my personal experience.

What frustrates you about Australia at the moment and what gives you hope for the future?

I believe the political failings of neoliberalism are something that would really frustrate the common good and fairness of Australia.

This quote is from Michael Young, a strong advocate of meritocracy:

[A] line of argument that is also made much of in the book is that a meritocracy can only exist in a full form if there is such a narrowing down of values that people can be put into rank order of their worth (1956).

This connects with a political insistence on the rise of a new form of meritocracy, which can also be prejudicial and ultimately discriminatory against those with socially defined lesser abilities or different abilities. Young argues that what one is born with, or without, is not of one’s own doing. To put it in a more crude form of discourse, being a member of the “lucky sperm club” confers no moral right to advantage. But such a view of “luck” does seem to align with the political-economic doctrines of some advocates of neoliberalism.

But I’m truly an optimist who believes he is a dreamer who will always pursue happiness and the disability can be irrelevant.