This review is from two of my most intellectually admirable and honourable friends, Christina Irugalbandara and Bruce Wearne.
This book comes out at an important time. It was conceived by its author with the inaugural roll-out of NDIS. It appears now at the time of the announcement of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
6 and ½ Years on a Dung-Hill issues a call for greater awareness of the complex task that confronts policy-makers and those providing disability-care. As Peter tells his own story, he asks policy-makers and providers of services for people with disabilities to heed those for whom their policies and organisations are designed to help. A just society will ensure safe and just structures and processes of care for those whose abilities to contribute are severely constrained by bodily malfunction, disease or injury. We need to find ways to allow the voice of those who cannot speak – like Peter with very slurred speech and deteriorating muscle function and sight – to be heard. We need to find ways to empower people with disabilities and enable their contributions.
Both the title of the recently announced Royal Commission and the title of Peter’s book suggest that something is seriously wrong in the way in which we, as a Commonwealth, care for people with disability. When something is wrong we need to sit up and take notice. However, this book is also evidence of something precious and positive.
Peter’s friend Hugh Stretton remarked one day that Peter’s academic success had validated the policies of “affirmative action” in Australia’s universities. Now there’s something the Royal Commission should think about. There’s much that needs attention and reform, but there is also much good going on that needs our diligent support so that good things continue and do not merely fall away.
Those of us who have assisted Peter in his work know that we have been working on the same project. Peter refers to it as ‘synergy’. Peter, the ‘political activist’, now publishes another book that maintains his distinctive public policy ‘voice’ for the severely disabled. It is a truly remarkable state of affairs in which we have participated, even as we have helped him form so many of the words that constitute his communicative contribution. Yet this is Peter’s work, not ours, and we are glad for him that it be so. This is a vital economic bond that binds writer and writer’s assistants – but it is unpriceable and that is what makes it truly economic – it’s what is generated by a shared, scarce but unpriceable trust, so that the book itself can best be seen as a ‘by-product’ – yes, it is wonderful even if it is only a ‘by-product’ – of an ongoing and developing friendship.
Peter’s book, is also the kind of evidence that the Royal Commission needs to confront and take seriously – it is evidence of people with disability resisting incredible debilitations. Read 6 and ½ Years on a Dung-Hill and you realise that Peter would have the Royal Commission bring together a report that inspires the people of this Commonwealth to ensure that limp hands continue to be empowered and weak knees continue to be strengthened as pathways continue to be cleared. it should not simply be a chronicle of horrors.
Not everyone can publish material that openly draws attention to his or her own ‘bag of bones’, let alone one of severe bodily constraints that bring personal and intimate disappointment and regular frustrations. This is the daily reality for those with such a debilitating ‘disability’. Need it even be said that these are deeply personal issues? Well yes, but not simply to bemoan or complain about them. The ‘bodily malfunction’ presents silently as a moan more profound than a thousand thousand words can ever configure.
Yet it would be deeply dispiriting for the author and the author’s friends-cum-co-workers if the Royal Commission simply results in a report that documents abuse and system failure. In this new compilation of previously published articles, Peter broadcasts his ‘beef’ about the ideology that propels the management of supported accommodation. In other words, we do not need a Royal Commission that laments management’s inability to control everything to do with disability support. There needs to be a fresh affirmation of friendship in this society so that genuine, supportive care can be deeply respected and honoured, supported without the raised eyebrows of workers “getting too involved with clients”. In this sense, Peter’s book, as a critique of managerialist ideology, is an appeal to those providing ‘Specialist Disability Accommodation’ to think again about what it is they are “providing”. His book asks: isn’t it a privilege to work with people; does not disability support need an ethos that avoids viewing people as clients with deficits?
This book is evidence of the author’s refusal to allow his condition prevent his mobile mind from pushing ahead with what has to be done. In March 2006 he graduated with a doctorate from Melbourne University. Since then he worked at becoming a regular contributor to various web-based sites including Graham Young’s On Line Opinion. He also launched his own blog, contributing whenever and wherever he could.
Recent years have not been all plain sailing. A progressive condition progresses. And this book is also like a diary, ongoing reflections from within the difficulties, on top of his “dung hill”.
Peter works. His body may be increasingly inert but the arrival of this publication continues his persistent effort to “push back” against the frustration that such restrictions bring with them. His rhetoric may seem tinged with bitterness at times but readers should keep in mind that he is “pushing back” against being overwhelmed by the progress of “Friedreich ataxia”. His aim is clearly to keep his own responsibility as an advocate for social justice on his and our horizon.
Well done, Peter. Thanks for continuing to remind us all of our responsibility to contribute to social justice!