Another possible submission to the Royal Commission

NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G)

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”.

Job on a Dunghill

My time in shared supported accommodation has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see. The loss of my control and dignity manifests as motivation to change the delivery of care in the disability sector.

Poster: 6 and a 1/2 Years on a Dunghill

Here is the poster my team and I have created for 6 and a 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. I believe the book contributes immensely to the current debate surrounding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

A Top Sociologist’s Reflection on Australia’s Form of Postmodernism for the Young