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) Continue reading “Another possible submission to the Royal Commission”

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The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy

August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—

Scoliosis

Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.

Heart disease

Around three-quarters of people with Friedreich’s ataxia will develop some form of heart disease, usually hypertrophic cardiomyopathy which is when the heart muscle becomes thickened.”

Continue reading “The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy”

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”.
Continue reading “The relationship between Nystagmus and my individualistic style of Friedreich’s Ataxia”

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. Continue reading “Job on a Dunghill”

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. Continue reading “Poster: 6 and a 1/2 Years on a Dunghill”

Pushing on for Justice: A Book Review

This review is from two of my most intellectually admirable and honourable friends, Christina Irugalbandara and Bruce Wearne.

Continue reading “Pushing on for Justice: A Book Review”

#RoyalCommissionNOW

In my book 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation, I have so eloquently expressed the need for 4 key elements in the disability sector: passion, empathy, altruism, and pragmatism. This is very clearly on display by Senator Jordon Steele-John in his speech linked below. I highly encourage everyone to take some time to watch this emotional, awe-inspiring speech.

Senator Jordon Steele-John also adds the following to his video:

I gave this speech last year in dedication to those members of my community who lost their lives due to violence, abuse and neglect.

Their voices remind us why we are fighting for justice. In their names we go forward.

#RoyalCommissionNOW