John Gillibrand

John Gillibrand an Anglican priest serving in Wales relates his life drama about his severely autistic son Adam. He examines the tensions in his life and ministry vis-a vis the challenges of caring for Adam and offers a fruitful conversation of the impact of this journey on his Theology, Philosophy, church and government. How does Adam enter into the sacramental life of the church if he cannot communicate and lives only in the moment? How does the government provide support with diminishing resources and lack of understanding? And lastly how does the caregiver survive? He expands on these questions and offers much for reflection for both parents and others supporting the developmentally disabled.… (més)

How do we treat disabled people, and what is our attitude towards them? How uncomfortable do disabilities make us feel - or do we simply not think about it? These are among the questions which John Gillibrand thinks about in this thoughtful but demanding book; and they are reflections which come from the collision between his experiences as an Anglican priest and as the father of a severely autistic son, called Adam. Adam can't speak any more than a few disjointed words, and has no capacity to use language imaginatively. In some ways this book is offered to us in place of the biography which he himself will never be able to write, and which he cannot even imagine. And it is hard work.
At the very heart of the book is the fundamental question about what it means for the rest of us to recognise and respect Adam's full humanity in the 'image and likeness of God'. That, of course, is an idea which we receive from the Scriptures; and it is the basis of any Christian view of the absolute equality of all people in the sight of God. But those are fanciful words if they don't make any difference to how we understand and respond to each other within our own sight. How, for example, do we understand disability? John Gillibrand has become increasingly exasperated by society's tendency to see disability as a 'problem' which must be 'solved': but Adam is not a problem; Adam does not need to be solved - he needs to be loved and cared for and honoured as a complete human being every bit as much as the most able person in the world. Everything in this eloquent and demanding book starts with that.
I want to say why I have read this book. Among my own friends there are those whose disabilities have led them to ask us whether we really value them, and what we think we mean by that 'value'. We have a conversation going on among us about what it means to be a more hospitable, welcoming and inclusive group of people towards those who do not fit majority ability or preconceptions. Yes: these words 'welcome' and 'inclusiveness' pop up again and again, and some of us find them frustrating - a kind of politically-correct jargon. But they will continue to press in on us until we do become more genuinely inclusive. That is perhaps part of what this book, too, is for.
John Gillibrand gives some damning accounts of just how non-inclusive Churches, for example, can be: 'There are congregations in which children and teenagers are not made overwhelmingly welcome, let alone those with extreme disabilities'. He does not see this as something merely 'unfortunate', but as something deeply anti-Christian. Why? - Because Jesus Christ is the sign of God incorporating every aspect of our humanity, including our weaknesses and our brokenness and our 'disability' into the very nature of God. It is that, or it is nothing - and every failure of welcome or hospitality or of inclusion is a slight against the very character of God. Think about that. John Gillibrand wishes we would do - instead of getting sidetracked by questions of 'good behaviour' let alone gay sex.
Yes: there is anger in this book. But it is also an enormously compassionate and gracious book. (Have you worked out in your own experience the way in which anger and compassion are not opposites of each other, but are in fact components of each other? Maybe many of us are not that mature yet.) After a detailed description of the actual circumstances of Adam's life, and the extreme difficulties of his growing up (the book was written when Adam was in his mid-teens), it goes on to reflect on what the Scriptures have to say about disability and its relation to God, and it considers what goes on in Church. It also contains a careful reflection on the 'Cloud of Unknowing' and the traditions of apophatic theology which are becoming more familiar in western Christianity; and it explores how they might correspond to the ideas embedded particularly in the continental philosophies of 'difference'. Adam himself is different from us; he lives within a kind of cloud of unknowing - and these words and images might help us find a deeper sense of our relatedness to him and others whose experiences are radically unlike our own. But it is challenging, not only of emotion, but of mind and spirit too.
So much of what we do, and of who we are, depends on words and language (this is true especially of philosophy and spirituality - John Gillibrand is not blind to these paradoxes): the Bible, too, is a supreme example of this; and Church services tend also to be wordy. More than that, they are full of metaphors and symbolism - they presuppose a capacity for imagination. What if we lacked that capacity? Would we be excluded from everything of which the Bible speaks? 'Adam [for instance] has never fully responded to his personal name'; he 'was, and is, very destructive'; and then: 'I was not prepared for the way in which the "public" would respond to a person with disabilities' - especially when other people wanted his parents to exercise some 'control' over his behaviour. So maybe this is the central question of the book: what happens to faith, including our faith in humanity, when everything is out of control? Some of us have faced that kind of question more completely than others.
The parts of the book which look at the Bible focus especially on Job's refusal to try and find a simple answer when everything goes wrong: in fact his response is one of 'elective silence' (which John Gillibrand compares with Adam's own experience of living without language); and it goes on to look at the way Jesus responds to disabled people: first of all seeking to heal them; later coming to a point of asking them what it is that they think they need, rather than assuming that he already knows; and finally, in the Passion, coming to a deep sharing in the experience of disability for himself. That may be quite a difficult development for us to follow, but it is worth trying: it is worth thinking of Jesus' experience on the cross as being a kind of disability, and an experience in which all human disability is included and held before God. John Gillibrand compares this with the experiences of people like Jean Vanier, who has shared the life of disabled people in the L'Arche communities rather than trying to 'heal' them. (What would we be healing a disabled person of? Their humanity? It is obscene to think so.) This book, then, adds to the development in contemporary theology of an idea of God as a 'disabled God', and of this being an intrinsic part of how God can be understood to save all of us: the disability as such is something which every single one of us shares - it is the human condition, and in that sense none of us is any better-abled than the most disabled person. All of this meditation on the Scriptures comes to a focus on the Good Samaritan, and on his priority for practical care; and on the resurrection, in which Jesus' own wounds are not healed, but remain a fundamental part of him, carried into God. He says to Thomas, for example, 'Put your hands into my side' - the brokenness remains, but with a new meaning and significance and value. Jesus' resurrection body doesn't have 'normal' bodily qualities, so we ought not to place too much weight on that kind of normality in ourselves.
This book, then, is a plea that we refocus our awareness and our care on what really matters, summarised in the ethic of the Good Samaritan (and most notably evaded by Priests and Levites). It asks us to stand alongside those whose life is at or beyond the margins which society (and the Church) have imposed on the world; it asks us to find 'a way of being with the vulnerable, of accompanying the suffering Christ in the contemporary world'. It challenges us to see the differences between people as something which we come to value rather than to change; it demands that we see disabled people as human beings with complete integrity, who are far, far more than their disability itself; it prompts us to consider our own disability. 'I could not believe that Adam's autism in any way mars the image and likeness of God in him', says John Gillibrand. 'I am angry with the Church (and, honestly, with my own denomination) for substituting all manner of concerns for the priority which Jesus gives to the Samaritan's practical care for those in greatest need'; and he concludes: 'The fundamental error is to treat difference as affliction, and to treat those who are different as "them" rather than "us"'.
Some of this book reads like the outline of a view of our shared humanity which has not yet been fully sketched, and there are occasional blind alleys and sudden jumps. Perhaps that is the nature of the subject - but in any case it is an exploration into which it would be good for more and more of us to find ourselves called.… (més)