By Duncan Reid
24 February 2022
Last month Australians were all treated to the unedifying spectacle of our federal parliament debating the rights – or wrongs – of religious institutions to exclude children who are considered in some way different from “normal”, whatever that might mean.
This memoir is the story of a family in suburban Melbourne in the 1940s and 50s living with and genuinely loving a member who was different. Although this difference was not in one of the ways debated recently in the public sphere. Rather, the author’s brother was severely disabled from birth – “spastic” was the term used at the time. But it was the sense of difference that that initially burdened the author so much, the reason she never invited friends home from school, the reason her nuclear family was slowly, almost imperceptibly edged out of social gatherings with cousins and the wider family.
Other burdens came later. We read of the burden of constant care on the part of her parents, and later, during the period of deinstitutionalisation and independent living for people with a disability, the burden of constant advocacy from author and her sister on behalf of their brother.
Throughout this memoir Dianna Edwards testifies to the constant role of her family’s very understated Christian faith, nurtured by parishes like St Oswald’s Glen Iris and St Luke’s Vermont. I’ve heard it called “lukewarm Anglicanism”. But its genius was for playing a sort of background music in the lives of a family with five children, living in almost constant uncertainty about money and housing, and above all, anxiety for a much-loved sibling whose disabilities demanded ever more time and attention. This faith made few demands, with the exception of unpretentious love itself. But it was a constant presence, mentioned only in passing from time to time through the narrative.
Edwards’s memoir is a story of very great courage, love and patience in the face of frustration, especially frustrations in dealing with the various public institutions whose responsibility was to care for people with a disability, but which so often failed them and their families. It is a book the author felt she had to write, a story she had to tell. Her message to me was characteristically self-deprecating “Be warned – it is no literary ‘gem’, but merely a story I felt the need to tell.”
Why did I choose to read it? Simply because the author is a former parishioner from my curacy over 40 years ago, and as the American writer Marilynne Robinson puts it, “when people come to speak to me, whatever they say, I am struck by a kind of incandescence in them…. To see this aspect of life is a privilege of the ministry which is seldom mentioned.”
A memoir is a coming to speak, and the incandescence, the passion to speak up, is there throughout. I am sure I am not the only one who will feel this. My only regret is that I chide myself for not asking the questions that might have brought more of this story to light back then, all those years ago.
The Reverend Dr Duncan Reid is head of Religious Education, Camberwell Girls Grammar School, and an adjunct faculty member at Trinity College Theological School and the University of Divinity, Melbourne.