Theology and the Experience of Disability

Interdisciplinary Perspectives from Voices Down Under

Andrew Picard, Myk Habets, Andrew Picard, Myk Habets

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317011132
• Edition: 1
• Topic: Theology & Religion
• Subtopic: Religious Essays

The Christian gospel compels humanity to embrace deeper ways of being human together that will overcome false divisions and exclusions in search of flourishing and graced communities. Presenting both short narratives emerging out of theological reflection on experience and analytical essays arising from engagement in scholarly conversations Theology and the Experience of Disability is a conscious attempt to develop theology by and with people with disabilities instead of theology about people with disabilities.

A mixture of academic, professional, practical, and/or lived experience is brought to the topic in search of constructive multi-disciplinary proposals for church and society. The result is an interdisciplinary engagement with the constructive possibilities that emerge from a distinctly Christian understanding of disability as lived experience.

Part I

Theology, Disability, and Being

1 Disability and the Theology of 4-D Personhood

Sue Patterson

Introduction

On 1 April 1984 our daughter Felicity, aged seven, broke her neck in a fall, spent some months on life-support and altogether twenty months in hospital. During those months my husband John and I fought and won battles with two doctors who wanted to let her die. The first one, a young registrar anaesthetist, advanced a quality of life argument. Felicity, still in a coma, was breathing with her accessory muscles and would sooner or later become too exhausted to continue. When that happened, wouldn’t it be better to not put her on life support? Would we want her to have a life in which she would never be able to go skiing? Later on, Felicity recovered enough to move to the children’s ward from intensive care, but had ongoing breathing difficulties. One night she stopped breathing and was resuscitated by the night nurse. The consultant anaesthetist wanted our permission not to put her back on a ventilator. He advanced a combination of moral and economic arguments. It was obscene, he suggested, to be spending so much government money keeping Felicity alive when the same amount of money could benefit a large number of other children.¹

It is possible to extract two propositions in relation to personhood from this story: first, viable personhood is to be defined in terms of quality of life, which is dependent on individual autonomy; second, what our life is worth is subject to cost-benefit factors, and is therefore an economic issue. I suggest that these propositions are indicators of two models of personhood that are inextricably linked: personhood as autonomous individuality and personal worth as economically quantifiable.

The Values Behind the Values

If being a person means being autonomous – that is, being a self-mastering and self-responsible individual – individuals with disabilities that preclude autonomy do not qualify. There are two reasons why autonomy is seen as inseparable from personhood. First, the view of the person as a self-determining, self-mastering, even self-creating individual is deeply entrenched at all levels in our society. It has become the water we swim in. Enlightenment individualism – understanding of the self and personhood in terms of individual autonomy – has generated a view of society as composed of individuals.² An emphasis on personal autonomy has led to a devaluing of relationships of mutual interdependence, and the duty of care toward adults who are not able to be independent has shifted to governments and their agencies, and others to whom they delegate this duty.

Second, autonomy underpins the notion of personal worth as quantifiable. Autonomy is self-sufficient. It makes no demands on others, therefore it has economic worth. It underpins the commodification of society,³ in which members become economic units such as customers, consumers, and earners.⁴ In this way, autonomy as a primary value enables certain economic ends such as control of health budgets. This has profound consequences for those suffering from disabilities.

The Ethical and Moral Consequences

A system is only as good as its weakest point. If principles of justice and fairness for all are employed, the test of adequacy of any system which undertakes a duty of care will be the worst-case scenario: the person with severe disabilities. Our response to the consultant anaesthetist might have been: Why should one needy person be sacrificed to benefit other needy persons? Why not increase the pot to address the real level of need?⁵ Yet it is obvious from his statement that such a test of adequacy does not obtain here. Instead, things operate in reverse: adequacy is used as a test of the individual case rather than as a test of the system, which is not held accountable to the principles of justice and fairness for all.⁶ It is adequacy in terms of personal autonomy or projected quality of life that is required to qualify for the support that makes living possible. The corollary is that those human beings who fail to achieve this threshold are likely to be treated as less than persons because their lives are not worth investing in to the point that will make them viable as understood in terms of profit to society. This is the more so where investment of the same money elsewhere would be more profitable; hence the cost-benefit analysis of the consultant anaesthetist.

The true determiner of a decision that appears to be based on viability or sustainability of life or health may therefore be economic. This is apparent in the use of various calculation systems to work out the economic value of an individual’s life year ratio – that is, the person’s projected productive utility – in order to assess the cost-effectiveness of medical treatment or intervention.⁷ Viewed theologically, the use of such models as economic calculators of medical entitlement, however pragmatically necessary they might seem,⁸ are indicators of ‘structural sin’.⁹ The reductionist model of personhood they represent has arisen from deeply entrenched values endemic in our worldview which are antagonistic to complete human personhood. In other words, their very necessity is generated by a deeper problem that affects the whole of society: the turning from a relational ‘I–thou’ to an instrumental ‘I–it’¹⁰ which has led to the commodification of persons¹¹ and which – along with and related to another model, person as consumer – is an ideological legacy of modern capitalism, although its roots are far more ancient.

So, in a circular way, the ethic of economic utility is justified according to the axioms of the model of person-as-individual-as-economic-unit it reinforces; however, the model of personhood is itself challengeable on the basis of adequacy: it does not describe the reality of human personhood as we live it.

Personhood

I need to acknowledge at this point that personhood is a notoriously slippery concept that has been tossed around by philosophers and theologians for millennia, as have the equally slippery and related concepts of ‘mind’ and ‘soul’.¹² Whatever the difficulties with the concept of personhood that dispose philosophers and scientists to argue about it or throw it out,¹³ there are theological reasons why we should talk about human beings as persons rather than selves. Theologically, ‘person’ is a category which includes, but is not exhausted by, ‘human’, as it includes both divine and human personhood. It is also more than the equivalent of ‘individual’. Relational social models of personhood challenge the coherence of the prevalent worldview of persons as individuals in society. Philosophers such as Buber, Macmurray, and Gillett and theologians such as Gunton, Zizioulas, Grenz, and Alan Torrance demonstrate that personhood is characterized by inextricable connectivity or relationality.¹⁴ Personhood consists of reciprocal being in relation as a member of family and community, which means that social being is constitutive of personhood and subsumes individual being. As this relationality is dynamic and ongoing, human beings live out their lives as persons-in-relation in time.¹⁵ This is the fourth (and overarching) dimension of personhood.

4-D – four-dimensional – social models of personhood have a narrative quality because social continuity of personhood is maintained through a dialogue between personal and social recalling. Inherent to relationality is the sense-making of lives – the articulation of their meaning as they develop, and their projection beyond the present into a future that is both personal and communal. My story is told from conception to beyond the grave, and the storied-ness of my personhood is reciprocal with the storied-ness of my family and other communities, so that my own narrative of personhood takes place within the narratives of these communities just as theirs are expressed in part through mine.

The Ethics of 4-D Personhood

Understanding personhood as both relationally and socially constituted and four-dimensional entails levelling the playing field, because at any one time the burden of disability is communally shared, and furthermore, in a four-dimensional view, all members of society lack able-bodiedness at some time in their lives.¹⁶ The neglected principles of justice and fairness¹⁷ that might have been used to test the adequacy of the care offered by society may be seen to rest on a relational model of personhood in which entitlement cannot be compartmentalized according to economic calculators. The web of relationality does not allow any of its components or moments to be isolated into atomistic units. As adequacy is set by the hardest case, this rules out an ethic of utility in which the disabled person is assessed according to his or her benefit or cost to society. Instead, the ethic is the principled one of justice and fairness expressed in the meeting of personal need, responsibility for which in a relational society is shared by all. Grant Gillett sees personhood in terms of membership in a moral community, and the potentiality of personhood as existing socially as part of the moral community of family and community from the moment of intended conception onward. In the process of personal development, the role of the community is shown to be more than recognition and respect; it is also a mutual embrace which promotes growth, enriches, and helps fulfil personhood.¹⁸

Our daughter Felicity’s personhood was not hers alone; it was (and remains) inseparable from the continuity of the communities of which she was a member – her family, friends, church, and the school where she worked. Her disability was shared by these communities, and she shared in the wholeness of their history, which in the case of family has included a time of potential and anticipated wholeness before disability that is held in the family memory. Her disability remains the possession of the community. The relational nature of personhood means that whatever is done to one is done to all. Her neglect or exclusion would diminish the whole: ‘When one part of the body suffers, all suffer. When one part rejoices, all rejoice’ (1 Cor 12:26). Yet while the realization of her capacity was also at the hands of her communities, with the encouragement and addition of resources that enabled her to function and bear fruit in her various roles and gifts (in the family, we always had a saying: ‘Add more resources until the thing can be done’), her presence also enriched and extended the family and communities to make them more than they could have been without her, and continues to do so.

The life-trajectory comes to include the disability, however and whenever it is acquired, as part of its telos. To regard it as telos is not, however, to be deterministic (as in DNA determinism¹⁹) or to suggest that the disability-including trajectory is divinely predestined. It is to suggest that the trajectory of our lives may include a disability which will deliver, paradoxically, a wholeness and good which otherwise would not be that may challenge human considerations as to what is whole and good, and by implication, how we understand God’s goodness.²⁰ Therefore, Felicity’s shared story concerns ‘the issue of [her] place relative to the good … within a social-cultural context’.²¹ So when she became incompetent as she neared death²² to articulate and/or live out the potential trajectory of her story, that story nevertheless had, and continues to have, its place in, and must be told by, the community or communities in which she was placed, as relative to their good because her disability was, and continues to be, related to the overall good of those communities of which she is a part, and as such enriches their moral life. Thus, paradoxically, the negative of dis-ability becomes a moral positive.

Theological 4-D Personhood

Through grace, weakness becomes strength (2 Cor 12:9) as a gift to community. The christological paradox of strength being revealed in weakness to deliver a wholeness which otherwise would not be challenges and transcends human notions of weakness and wholeness as God works all things together for good (Rom 8:28).²³ It follows that the involvement of the community is not focused solely on the enabling of life and prayer for healing, but also includes a re-envisioning of disability as a unique contribution to community which confers aspects of personhood which would otherwise not be a part of the community, the purpose of which lies beyond our world and our comprehension. The corollary of this is that if fulfilment of personhood is seen to require an endpoint in a new creation for some, then that endpoint is not merely reserved for those who cannot find earthly fulfilment.

Felicity’s story cannot tell the whole of her because it cannot take in the future, the telos, of her personhood. It may tell of her potential and its degree of realization in ...