The relationship between Nystagmus and my individualistic style of Friedreich’s Ataxia

Below is a definition of Nystagmus as derived from Wikipedia:

Nystagmus is a condition of involuntary (or voluntary, in rare cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. Due to the involuntary movement of the eye, it has been called “dancing eyes”.

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When I was in my late forties, I started to notice that my eyes refused to focus properly, a condition which was usually exacerbated by glare. In Friedreich’s Ataxia, nystagmus is common among those who have been diagnosed with the condition pre-puberty. Nystagmus is caused by the weakness in the muscles behind the eyes allowing them to jitter and then lose focus.

At forty-four, I stood as a senate candidate for Victoria in the federal election of 2007. During this period, I falsely subscribed to a form of empowerment that had never allowed me to achieve any of the goals I had started to work so hard for. When I stood for the Senate I too easily assumed that those elected were truly concerned about the state of affairs that people like myself have to deal with. But it seems to me that it was they who were stuck in a static stereotyping view of the problems faced by people with progressive conditions. It took me some time to realise this. Thinking about my nystagmus helped me understand something about the slow but sure change and depletion in my powers and choice.

The failures I was about to face was part of the reasons for the deterioration of my nystagmus; the failure to come to grips with many of the stereotypes concerning Friedreich’s Ataxia, especially, presented itself as a burden to my life’s pursuits. But in dealing with this I have always played the best hand with the cards I have been dealt. However, that does not mean that pursuing my dreams has made my life any easier.

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. My nystagmus which started in my late-forties, did not start affecting me until 2013, a time when I started encountering a lot of problems with the way disability services were being carried out by disability service providers.

In 2011, I moved into a shared support accommodation facility. And it is here when I started experiencing that I had suffered a severe loss of control and choice.

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. The “movers and the shakers” in disability care, those who are stakeholders in the disability care industry, always try to find a solution that is cheap and safe, rather than develop a flexible supportive regime that can provide the person with a severe disability support that maintains the good things that have previously been a part of a life they have been used to previously.

The long-term impacts along with the fundamental loss of control, have been a huge contributor to my poor eyesight (Nystagmus). And today, nystagmus has virtually left me blind.

Friedreich’s Ataxia has also caused Dysarthria. This is my deteriorating ability to speak, and convey my thoughts. The failure of communication has also played a fundamental role in my growing loss of control, and so I am unable to speak up to challenge the stereotypes that come across my life on a daily basis. The failure of communication is an ability that those who can communicate rarely take on board, or empathise with.

What I am trying to say is this; disability can be progressive and that means that support for those subjected to physiological deterioration needs to be progressive too. That is the support that needs to change and adapt continuously to meet the actual situational that the person confronts.

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

PETER BOOK POSTER FINAL

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.

Thank you to Bruce Wearne for his empathy and understanding in helping me with this piece. And the ‘thank you’s do not end there. Chrissy, Ikemi, and Mercy: my academic support workers who have helped me with editing, reading and writing.

 

Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

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