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Did I Deserve 7 Years of This Imprisonment?

The below is written to give an acknowledgement to professor Martin Delatycki and doctor Louis Corben for their expertise in the medical conclusions of Friedreich Ataxia.

“Dr Peter Gibilisco was diagnosed with Friedreich ataxia at the age of 14 years. He is now 55 years old.  Friedreich ataxia is a rare, progressive neurological condition. The main symptoms of the condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking and significant heart involvement. The affected person eventually loses their capacity to walk and becomes dependent on a wheelchair for mobility. In addition they increasingly require assistance with most personal care tasks as the disease progresses. To date there is no known cure for this life-shortening, devastatingly progressive and debilitating condition.

3 Hours…

I don’t have the capabilities to type on my own, without the assistance of my academic support worker; but, over my 56 years, I have developed a drive to achieve the improbable.

Innovation and disability – Mark Brown

 

As a person with a disability, I am often told I have special needs. This may be, but to my mind, it’s more useful to say I have special problems.

An Open Letter to the NDIS

I want to know how come I haven’t been contacted by a NDIS planner yet. I am becoming very blind, and you don’t know or understand how difficult it is for me, and how much worse it is becoming.

Am I supposed to just sit here and do nothing but accept the very minimal time I have been allocated the academic supports in order to voice my thoughts? Am I supposed to just sit here and do nothing but accept the inadequate care that I’m given by my disability support provider?

This place is phenomenally having negative side effects on my physiology; it is worsening everyday. For instance, today my vision is so blurred, and thus I’m under extreme pressure to type, what would be considered the most basic of emails. Please, my intelligence needs synergistic human help, that can only be provided through 1:1 support; this is not what is given in shared supported accommodation.

To anyone with a heart, with some compassion, patience and empathy: I really need out. The lifestyle that I am forced to live is very inappropriate under medical and social practices.

Monash Human Library and New Book

Last week, on March 29, I was a keynote speaker at the Monash Human Library which was held in the Peninsular campus. This was conducted to an audience of about 100 OTs – both students and professionals. My keynote speech explored the individualistic pursuits of Friedreich’s Ataxia which can be summarised as follows:

Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia

 Introduction:

I want to discuss a disorder that afflicts me. Friedreich’s Ataxia (FA) will eventually leave the person afflicted with severe socioeconomic and medical restrictions. And because of this many people with FA are constantly subjected to stereotypes, as losers. We are unfairly harassed, and our abnormal features and functions as a result of the disability doesn’t make our life any easier. Believe me. My experience is that many people – it doesn’t matter what walk of life – believe they know best for an FA suffered and will then apply the stereotype to tell them what they can and can’t do.

Does this sound fair to you?

Breaking down the stereotypes on disability

Please watch this.

An estimated 20 per cent of Australians live with a disability, but how often do you see that represented in advertising, in the media or in popular culture?