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A Theological Diagnosis: A New Direction on Genetic Therapy, ‘Disability’ & the Ethics of Healing

Reviewed by Fr Luke Penkett.

In a culture that appears to be increasingly dominated by an ideology of health and beauty, Matt Edmonds offers a timely critique of present day attempts to remove ‘disability’ from our society.

He begins by revisiting three writers on disability: Nancy Eiesland (to whom the present book is dedicated) whose The Disabled God: Towards a Liberatory Theology of Disability (1994) and Human Disability and the Service of God (1998) were written out of her own experience of disability (she was born with a congenital bone defect) and offer “an invitation for both people with disabilities and others who long for emancipatory transformation” (A Fritzon and S Kabue, Interpreting Disability: A Church of All and for All, (2004)); John Hull, who lost his vision completely in 1983, and wrote Touching the Rock: An Experience of Blindness (1990), On Sight and Insight (1997) and In the Beginning there was Darkness: A Blind Person’s Conversations with the Bible (2001), stemming from his personal experience; and Stanley Hauerwas who started writing about people with intellectual disabilities in the late 1970s and many of whose works are edited by John Swinton in Critical Reflections on Stanley Hauerwas’ Theology of Disability: Disabling Society, Enabling Theology (2004).

In revisiting these writers, Edmonds goes further, informed by other disability theologians and his own experience as an assistant in L’Arche. Eiesland, he argues “neglects the fact that there is a real difference in the individual needs of different people and that not all of these needs can be explained away as the unnecessary obstructions that society places on independence” (p.31). Similarly, Hull “neglect(s) the inclusion of those who do not fall into its categories of understanding” (p.31). Hauerwas, too, seems guilty of the ‘One size fits all theory of inclusion that has the potential to neglect the person for the sake of the theory itself’ (p.32). Here is evidence, I think, that, over the past couple of decades, the emphasis in disability theology has shifted from the disability to the person.

There follow two chapters on genetics in which Edmonds charts the movement from the ground-breaking work of the nineteenth-century Austrian monk, Gregor Mendel, to the new eugenics - a skewered history indeed (p.102). Next, three chapters on faith healing, its global rise, its inherent dangers, and an attempt to respond adequately to the question of “what constitutes the Christian duty to comfort the vulnerable” (p.169).

The final chapter shows Edmonds at his most vulnerable. After rightly criticising “the narrow vision of genetic reductionists” and “the misplaced Christian vision of faith healing”, the chapter blossoms like a flower in the desert. Edmonds discusses the “unconventional therapeutic” (p.188) upon which L’Arche is founded namely that weakness is to be nurtured, a therapeutic that is a sign, not a solution, and, as such, that there is about L’Arche a “necessary incompleteness” (p.192).

A superbly argued book, A Theological Diagnosis is well supported by its bibliography and indices and will be of enormous assistance to all of us living or working with disability.