Pearls and Irritations

I was profoundly amazed the moment I walked into the room back in 2018 where I was to have an interview with one of Peter’s support workers.

My job was to be a personnel management adviser and my amazement became centred around Peter’s resilience and achievements, despite being in a condition that has the potential to make anyone give up on life. I worked with Peter for about 18 months, and I saw firsthand his brilliance and strength. If there is that one thing I can say about Peter, it is that he has a golden heart. Love for the welfare of others is foremost in his interaction.

Reflecting on Peter’s experiences with Friedreich’s Ataxia has provoked mixed feelings in me over the years. While I admire Peter’s determination to pull through this difficulty and achieve an enviable academic status, even attaining a PhD, it also fills me with consternation when I try to imagine what he has to go through every day. Indeed, where there is a will, there is a way, and Peter’s life story, reflected in the pages of this collection of essays collection, fully embodies that proverb.

While I ponder on Peter’s retrospection on his journey so far, helped by these sensitive autobiographical essays, I imagined living every day with the reality of a disability that has no known medical intervention. From 14, Peter weathered the storm of uncertainty to yet reflect a heart of gold; indeed, there are silver linings behind every cloud. Peter’s miraculous journey with education is an inspiration that should encourage people everywhere.

This collection of Peter’s articles presents a window for both government and individuals to move toward a more pragmatic approach in their efforts to render genuine, well-rounded support for people with disability. Peter’s articles are from the heart of his experience. He is an advocate for personally relating with people with disability in order to avoid treating them with some sort of patronising prejudice. Peter’s thoughts on how disabled people should be cared for are focused on friendship and certainly not about engineering sympathy. Having lived with disability, this harvest of his brilliant mind should spur authorities to reflect on the current state of disability support services and their persistent trend toward standardisation.

Peter’s reflection on the current state of disability services advocates for people with disability to have access to opportunities, without the drama of political gerrymandering. He is now in his 60s, but his passion for fairness and intentional contributions from stakeholders for people with disability has not waned. The articles of “Rocking the Boat – Significantly” are a clarion call to everyone, that we can make the world a better place for people with disability. Let’s change our perceptions becoming more intentional!

It is evident from Peter’s experience that with the progression of age, the negative effect of Friedreich’s Ataxia seems more daunting and discomforting, but with Peter’s resilience, he keeps going and is surely pulling through. I recommend this book which should shape the worldview of government and non-government institutions as they interact with people living with disability and enact laws. Peter’s mindset, which is embedded in this statement, “disability is not inability”, should also serve as an encouragement to people of all ages in every nation.

Let me use this opportunity to thank all who have been extremely supportive in Peter’s journey with Friedreich’s Ataxia; you have all been amazing, John Menadue and Pearls and Irritations in particular. Thank you so much! Peter’s appreciation to everyone of you is also a testament to his great personality. I encourage all who read this book to be inspired by Peter’s life journey, both in the good and trying times.

Privately published in PDF format for download.

Republished from Peter’s Political Blog, August 23, 2024

Read Peter’s articles in Pearls and Irritations:

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