Disability can be progressive. Supportive regimes must be progressive too

Feb 20, 2023
Nystagmus, disease eyes, neurology.

In 2007, at age forty-four, I stood as a Senate candidate for Victoria in the federal election. In 2011, I moved into a shared support accommodation facility, where I suffered a severe loss of choice and control. Disability can be progressive. Supportive regimes for those subjected to physiological deterioration need to be progressive too. They must adapt continuously to meet the actual situation, and the distressing “development,” that the person is confronting.

This article explores Nystagmus, Dysarthria and some of their effects on communication caused by 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”.

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 the glare of light. Some individuals do have significant visual problems as a result of Friedreich’s Ataxia. This is due to damage to the nerves that detect visual stimuli. In addition many people with Friedreich ataxia have abnormal eye movements such as nystagmus, square wave jerks and ocular flutter. These abnormalities are due to damage in the area of the brain that controls movement of the eyes. What this means practically to a person with Friedreich ataxia is that it may be difficult to focus on a screen, print or small detail of an object. In addition damage to the optic nerves means that visual acuity is significantly impaired on occasion leading to complete blindness. As a result of my Friedreich Ataxia I live with both causes of visual impairment.

At forty-four, I stood as a Senate candidate for Victoria in the federal election. That was in 2007. During this period, I falsely subscribed to what I thought would be a form of empowerment for disabled people like myself that had never been given pathways to achieve any of the goals I had worked so hard to achieve. When I stood for the Senate, I too easily assumed that those elected would be truly concerned about the state of affairs that people like myself have to deal with. But it seems to me that it was more a case of those seeking political office who were stuck in a static stereotyping view of the problems faced by people with progressive conditions. And 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 own powers and choices.

The deterioration of my vision was part of the reason for the failures I would have to ace; and so I gained a deeper insight into the failure of policy to come to grips with many of the stereotypes concerning Friedreich’s Ataxia, and this failure was also related to my need to learn just how much a burden my nystagmus has been to my own life’s pursuits. But as I reflect upon how I have dealt with this; I have to say that I always tried to play 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. Quite the contrary.

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 visual impairment, 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 where I started experiencing that I had suffered a severe loss of choice and control.

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 support to the person with a severe disability to maintain the good things that have been a part of the life which they have previously been living.

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

Friedreich’s Ataxia has also caused speech Dysarthria. Wikipedia defines Dysarthria as:

a speech sound disorder resulting from neurological injury of the motor component of the motor–speech system and is characterised by poor articulation of phonemes. In other words, it is a condition in which problems effectively occur with the muscles that help produce speech, often making it very difficult to pronounce words. It is unrelated to problems with understanding language.

This involves 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 these persistent stereotypes that I have had to face on a daily basis. Communication enables us to surmount many of the challenges we face in life’s pursuits. But when there is a failure in the ability to communicate, then a situation arises in which those who can communicate rarely take on board and may even be incapable of expressing empathy.

What I am trying to say is this; disability can be progressive and that means that supportive regimes for those subjected to physiological deterioration need to be progressive too. The “progress” needs deepened insight by those providing care into what is going on. That is, the support needs to change and adapt continuously to meet the actual situation, and the distressing “development,” that the person is confronting.

Thank you to Dani, Amanda, Lina, Sarah, Princess 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, and special thanks to Associate Professor Louise Corben in helping me to edit works on Nystagmus, Dysarthria and Friedreich’s Ataxia.


Recent articles from Peter Gibilisco:

Technological revolutions and the need for human interaction

My life with Friedreich’s Ataxia – some autobiographical reflections

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