Frances Young in her moving account of parenting her son (Face to Face) expressed very honestly her anxiety about writing from her own experience.
In general I’d agree with her that academic research isn’t the best place to work through your own hang-ups (therapy has always worked well for me). Yet I have an unusual story which has informed my life as an academic so it can’t be easily ignored. I am researching through the filter of how I see the world, just as much as anyone else. If I attempt to ignore it (philosophically and psychologically virtually impossible to do) I am leaving a rather large elephant in the room and could even be accused of ignoring a primary research resource – personal experience.
The life journeys we all take are dictated by the uniqueness of our circumstances. Our experiences are illuminated by self awareness which provides the momentum for change; the initiative to bring about a new perspective by sharing insight (our personal stories) with others. The story holder is powerful particularly when it is her story she is telling. Inevitably as the words leave her, she gives up sole rights to interpret. She has no sense how she will be heard. In sharing, she’s inviting her listeners to respond. But it is hers to offer and hers to live. There is real energy and insight potentially in the telling.
Frances Young fretted that as a confessional Christian there was a danger that her personal testimony around the parenting of her disabled child would draw attention away from God, and her relatedness with the world. God’s engagement is, somehow, although often wholly mystifying, inextricably linked with the activities of all that exists: for the person I am, my relationships and perceptions, are bound up in my evolving theological perspective and quest. Put simply, I believe that God made us and we now make God. We can’t help ourselves. We embellish our God in our own image. In my case that necessitates asking questions about what God would be like if she was disabled, like me.
To anchor this theological perspective, we will be exploring the Christian doctrine of imago dei. In the case of people with disabilities, there is a mismatch regarding the nature of creation and of human potential and responsibilities. The Christian assumption, if imago dei is viewed as a progression towards mental and/or physical perfection in this or eternal life, speaks less than favourably to people who consider themselves different.
There is a tension here; a recurring theme concerning whether disability is in any sense a desirable way to express what it is to be fully human. It has become traditional practice within the Christian Church to view perfection (a lack of sinfulness) as an aspirational goal. We ask forgiveness through confession and absolution. We look for chances to start over. We hope that at our death we will be considered ‘good enough’ to enter into some sort of a celestial eternal retreat. (Mine is a fully accessible library containing an infinite number of books in case you’re wondering).
Juxtaposed with the Church’s view are society’s perceptions. The inheritance of people with disabilities has come to be measured against the abilities of non-disabled people, and they have, inevitably, been found wanting, a drain on society’s resources and effectiveness.
If, in the telling of my story, I draw attention to myself, as Frances Young feared her own story-telling would do, then I also, given the beliefs I hold, draw attention to God – an understanding of God which suggests that creator/otherness is engaged in mutuality with humankind, and has relinquished God’s ultimate capacity to control in favour of enabling creation to realize its full potential and majesty.
My hermeneutical challenge is to see where traditional understandings of God and humanity meet contemporary perceptions of disability, and to examine the impact disabilities may have on received understandings of discipleship and of God. Any reassessment of doctrinal and ethical concerns will, by necessity, have implications christologically, liturgically, sacramentally, and conceptually on our perceptions of the God-being and of ourselves.