Chapter Seventeen:
In what ways can the chaplain challenge restrictive models of illness and thereby contribute to the resurrection of the disabled person?
Contents 2
Introduction 3
Definitions of Disability 3
Models of Disability 4
Medical Model 4
Social Model 5
Biopsychosocial-spiritual Model 6
Personhood 7
Resurrection 9
Liberation 10
Pastoral Care 10
Disabled God 12
Conclusion 13
Bibliography 14
Introduction
The title of this essay was inspired by Swinton’s ‘Resurrecting the Person,’ a contribution to the debate on valuing and affirming people with mental disabilities. This essay is not an exegesis of Swinton’s book. Indeed, I wish to narrow my focus to the person who becomes physically disabled as a result of traumatic accidents or through chronic illness, I am thus excluding disability at birth, elderly infirmed, and mentally handicapped people from my focus.
In this paper I am not suggesting that traumatic disability implies loss of personhood in the way that some may consider dementia progresses to a loss of personhood. I do, however, suggest disabled personhood is diminished by a number of factors such as: attitude, environment and the traditional models of approach to illness. I will explore these issues in this paper.
I propose that there is scope for Chaplains, during the time they are in relationship with physically disabled people, to contribute to the ‘resurrection of the disabled person.’ I will suggest that resurrection comes by liberation, through pastoral care of the Chaplain.
My own experience of disability, following a road traffic accident in 1979, will inform my approach and my faith will add a Christian perspective. I shall reflect theologically throughout the essay and conclude on a positive note, I am optimistic for the future for the group of people collectively called ‘disabled.’
Definitions of Disability
We are at a point in history when society names and shames prejudice. The most recent prejudice to be ‘outed’ was homophobia, forerunners to that were ageism, sexism and racism. De-Vries defines ‘handicappism’ as ‘discrimination against persons on the basis of physical or mental disability’(p.124, eds.Chopp and Lewis-Taylor, 1994). Notably, society has not adopted a name to shame prejudice against disabled people. Significantly, we seem to be at a juncture of society where ‘handicappism’ is in the process of being ‘outed.’
There is some debate over who are included in this minority group called ‘the disabled.’ The international symbol of disability shows a person seated in a wheelchair but the majority of disabled people are not wheelchair dependant. The largest group of registered disabled people are those with chronic lung disease such as cystic fibrosis, emphysema, and chronic bronchitis. We must therefore acknowledge at the outset that many people are disabled in less visible ways.
The Disability Discrimination Act 1995 defines disability as, ‘a physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day to day activities’ (www.drc-gb.org).
This definition is deemed to be flawed by disabled activists. Colin Barnes, defines disability as ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’ (Barnes, 1994 in Marks, 2001).
I intend to hold these two spectrums of definition in tension throughout this paper, one clearly categorising disability as impairment of some sort, the other referring to disabling barriers in society. For example the disabling barrier for deaf people is societies inability to use sign language (Oliver 1990, in Marks 2001).
My personal reaction to these definitions is that disabled people are not a metaphysical category as such. The grouping in itself depersonalises and denies one’s individuality. Disabled is a blanket term for a ‘number of people who have nothing in common except for being not normal’ (p.23 ed.Shakespeare, 2000). For the purpose of legislation definitions are essential but in other ways definitions advocate labelling which leads to ‘exclusion from spheres of social life’ (Ibid). If society was organised on more equal basis, many of the physical problems would disappear.
Models of Disability
It could be argued that the definition adopted by the Disability Discrimination Act is influenced by a Medical Model of disability and the Disability Studies definition is based on a Social Model of disability. Both models lack a spiritual dimension and I shall examine each in turn followed by a third model of disability known as the ‘Biopsychosocial-spiritual Model.’ These are just three of a number of models, which shape and influence our understanding of disability. Others such as the Psychological Model, the Eitological Model and the Anthropological Model are deemed to be beyond the scope of this essay.
Medical Model
The Medical Model is the traditional view of illness in society today. It regards the body as a biological machine and pathology is regarded as ‘undesirable deviations from biological norms’ (p.23, Pattison, 1989). ‘The Medical Model focuses on issues of pathology and eitology. The objective is to discover the biological roots of the disability and attempt to normalise and destigmatose it and to seek more effective ways to counter the worst manifestations of it’ (p.33, Swinton, 2000). This biological reductionism implies that disability would be eradicated if we could treat all illness and impairments (p.60, Marks 2001). The effect is that disability is seen as an abnormality and it is spoken of as a tragedy or a great loss. The disabled person is treated as an afflicted patient who desires and gratefully accepts treatment. This model may teach about the mechanics of human beings but it says little about being human, and nothing about beings created for community and for social interaction.
‘The Biological tendency is to focus on the individual apart from the social context within which the individual experiences the disabling condition. … This is an error based on the assumptions of the Medical Model an error that enables society to abrogate responsibility for the oppression and ‘disablement’ of disabled people. As such it requires a liberating counter-understanding’ (p.34, Swinton, 2000).
The Medical Model’s approach highlights the abnormality, whereas, a major part of a person’s disablement lies in the society and the environment where they experience their difficulties.
In reality, medicine cannot be value neutral, doctors are programmed to ‘fix what is considered to be pathological and dysfunctional’ (p.67, Marks, 2001). I am not advocating that medics should give up their fight against impairment on the grounds that it is good for the individual or society! Deborah Marks argues that the differing models are not to be polarised for one model to be accepted and another rejected. On the other hand, the Social Model is seen as a corrective to the Medical Model. We shall look at the Social Model in this next section of the essay.
Social Model
Disabled scholars espoused the Social Model of Disability by focussing on disabled people’s civil rights. This model claims that people are disabled because of the effect disabling environments, attitudes and cultures have on them. ‘Social and institutional structures in which certain physical, emotional and intellectual differences are identified and treated’ (p.4, Marks, 2001). Rather than focussing on impairments that distinguish disabled people from others ‘the Social Model brings a cross-disability perspective. Before disabled scholars entered the field disability tended to be seen as a problem to be empirically examined by practitioners in applied studies …rather than as a relational concept’ (ibid).
The Social Model was not developed to juxtapose the Medical Model, it emphasises the interrelationship of disabling barriers such as:
‘inaccessible education, working environments, inadequate disability benefits, discriminatory health and social support services, inaccessible transport, houses, public buildings and amenities, and negative cultural and media representations. [It] does not deny the importance or value of specific individual interventions in the lives of disabled people (eg medical) but emphasises that they are insufficient to achieve inclusion in a society pre-eminently constructed by and for non-disabled people’ (p.531, Barnes and Mercer, 2005)
The Medical Model proponents have tended to accuse the Social Model of being unrealistic about the medical problems faced by disabled people. Psychoanalytical writers accuse the Social Model of a failure to come to terms with their problems and a denial of loss (p.13, Marks, 2001). Another criticism of this approach is that despite being called the ‘social’ model it prioritises work and independence above community and interdependence.
There is a further issue with the Social Model of disability. Potentially, the academic interest denies the importance of narrative and the placing of individual’s narrative within communities and social networks. People with disabilities from accidents or disease have a story to tell. Shakespeare picks up on this; ‘previously there was a limited range of narrative devises available to people with impairment. Now, new stories are being told, and we are creating ourselves for ourselves, rather than relying on the traditional narratives of biomedical intervention’ (Shakespeare p.95 in Ed. Barnes and Mercer, 1996).
Biopsychosocial-spiritual Model
Williams writes in the Disability Reader: ‘In place of the monochrome language of the Medical Model…and the Social Model’ we should listen to the different voices contributing to the discussion (p244, ed.Shakespeare, 2000). Sulmasy attempts to bring different voices together in our third model of care, the Biopsychosocial-spiritual Model.
Based on ‘givens’ that every person is intrinsically spiritual and that a person is a being in relationship, Sulmasy, calls for a Biopsychosocial-spiritual Model. In ‘this model, the biological, the psychological, the social and the spiritual are only distinct dimensions of the person, and no one aspect can be disaggregated from the whole’ (p.27, Sulmasy, 2002).
Sulmasy says Engel developed the model in the 1970’s from a biomedical and psychosocial model which considered psychological aspects of illness. Complexities such as genetic, cultural, environmental, psychological, social, gender and relational are all factors which can impact on illness. The trauma of a disabling illness or accident strikes the whole person and the mental reaction and character of that person affects the outward expression of the disability, ‘although the interaction between the psychological and the physical are obscure’ (p.25, Pattison, 1989). Cicely Saunders, insisted care must be multi dimensional constituting physical, social, psychological and spiritual perspectives. ‘A holistic model of care demands a shift in focus from the efficiency and task of medical treatment to authentic relationships responsive to an individual’s needs and reciprocal in nature’ (p.24, Greenstreet, 2006).
The Biopsychosocial Model attempted to bring together the complexities of illness but failed to deal adequately with the Spiritual. ‘Science and technology do not have answers to questions about the meaning of life’ (p.29 Greenstreet, 2006). Sulmasy, thus, advanced the Biopsychosocial-spiritual Model, saying, ‘contemporary medicine still stands justly accused of having failed to address itself to the needs of whole …persons’ (p.24, Sulmasy, 2002).
‘Clinicians, at a minimum, have an obligation to ensure that a spiritual assessment is performed for each patient……Spirituality refers to an individual’s …relationship with the transcendent, however that may be construed’ (p.26, Sulmasy, 2002). This is known as secular spirituality which Paley argues is still under construction ‘having become separated from…. Christian piety and mysticism …since the 1980’s. Spirituality is universal, something which (unlike religion) all human beings share’ (p.1, Paley, 2007). Significant in this model is that healing is concerned with restoring right relationships rather than curing. Sulmasy quotes Teilhard de Chardin (1960), saying, healing is about restoration of milieu interior and milieu divin. This echoes Jesus’ dealings with the disabled as ‘whole persons,’ often emphasising the importance of restoring the person ‘post healing’ to their community.[1] ‘Holistic health care…is a system of care that attends to all of the disturbed relationships of the ill person as a whole’ (p.26, Sulmasy, 2002).
Clearly, this model, answers some of the limitations of the Medical Model in embracing the complexities of illness. None-the-less, it has evolved from the Medical Model and retains much of the criticisms of that model; treating the disabled person as if a broken machine, still viewing disability as a great tragedy, still ignoring the disabling environments which emphasise peoples disabilities. It also fails to address theological issues that connect disability with evil or divine testing. However, this method does appreciate that illness and disability can lead to ‘personal enhancement, emotional and mental improvement, and ….growth in spiritual stature’ (Swift, C, 2007, RTT-211, lecture notes, unpublished).
Personhood
In the introduction I suggested that personhood of disabled people is diminished by a number of factors such as, attitude, environment and the traditional models of approach to illness. I will now reflect further on this.
Throughout history there have been episodes where disability was treated as something to be dreaded, hidden and suppressed. From the Darwinists who tried to prevent mentally handicapped people from reproducing to the ‘ghetto’ wards of Bedlam in London there have been societal traits of suppression and gawping. A similar pattern followed Church history. Swinton speaks of ‘the oppressive nature of Western societies and the subtle ways in which the church is implicated’ (p.25 Swinton, 2001). The miracle accounts in the gospels have an obvious Medical Model construct and the Middle Ages linked some disabilities with the demonic. Even today the ‘Telly-evangelist’ approach to disability has the effect of marginalising the disabled and stigmatising disability. ‘Healing of disabilities is commonly conceived to be the eradication of disability as if it were a contagious virus or the repair of a broken person as if … a machine’ (p.206, Berinyuu, 2004). Each episode of pathologising and spiritualising has been oppressive for the disabled and has succeeded in diminishing personhood for disabled people.
Eiesland refers to a ‘disabling theology’, which links disability with sin on the one hand, and an opportunity for virtuous suffering on the other. ‘Disability is either divinely blessed or demonised … the defiled evil doer or the spiritual super hero’ (p.70, Eiesland, 1994). The former abets stigmatisation of the disabled and the latter, excessive pity and patronising. In both cases personhood is diminished because the disability is emphasised.
Utilitarianism has also fuelled this tendency. In the quest for the maximum level of happiness for the maximum number of people, those who are seen to be suffering or who are dependent, requiring costly care are worth less to society than those who make a contribution to maximising happiness (p.38, Marks, 2001). This ethic, though flawed in my view, has served to diminish personhood of the disabled. I believe it is flawed for a number of reasons, firstly, it assumes a definition of happiness which does not accommodate suffering, secondly, it fails to appreciate the reciprocal benefit to society of inclusion and thirdly, it ignores the reality that relational bonds, especially family, tend to be unconditionally loving rather than utilitarian (p.43, Marks, 2001).
The theological response to this is that ‘personhood is given to human beings by God’ (Shamy, 2003, pg.117). ‘It cannot be earned and cannot be lost…it should be a way of seeing the other person rather than in her utility value to me’ (Lebacqz in ed. Messer (2002) p.51).
Further, the utilitarian approach implies life is not worth living when disability affects ones quality of life (QOL). Society has adopted QOL as a way of expressing a norm that individuals desire for their personal lifestyle. When individuals project their QOL onto others and in particular the disabled they actually project their personal fears, the disability or illness they dread. In doing so, the able ‘projector’ diminishes the personhood of the disabled ‘projectee.’
Choice of vocabulary is another way in which personhood of disabled people is diminished. ‘There is no neutral language...to discuss chronic illness and disability, the language and categories we use influence the definition and measurement of ‘the problem’ (Williams, p.241, in Ed. Shakespeare, 2000). Descriptive words for disabling conditions have served to devalue certain groups. Historically, words such as Invalid, Disabled, Cripple, Spastic and Handicapped, have been used to describe disability. To varying degrees these descriptions devalue the person – ‘making the unique and sensitive human being into a category’ – disabled (p.1, Kitwood, 2005). Kitwood retorts, ‘The time has come to…. recognise people ….in their full humanity….’(ibid). Everyone has a unique DNA of culture, gender, class, lifestyle, outlook, spiritual beliefs, values, commitments, temperament, tastes, interests, personal history (narrative) and personal disability. I believe this is what Kitwood is calling us to appreciate as ‘full humanity’ as a preventative to devaluing personhood in others. This introduces my concept of ‘resurrection.’
Resurrection
Having commented on how disabled personhood may be diminished by oppression, language, the environment and the different model’s portrayal of disability, we need to ask the question what do we mean by ‘resurrection’ and develop this discourse into how the chaplain can contribute to the resurrection of the disabled person.
Speaking on Radio 4’s Thought for the day on 15th November 2007 Rosemary Lain-Priestley said “if we change the way we see disability, we’ll see disabled people differently.” Metanoia, encapsulates what I mean by resurrection, Swinton states that resurrection is the ‘death of death’ and when a Christian community adopts a critical stance against all forms of oppression that lead to death whether physical, spiritual, relational or social it amounts to resurrection (p.130, Swinton, 2000). ‘To see the whole person beyond the gaze of the Medical Model, in multi dimensional phenomena that affect the whole-person-in-the-whole-of-her world’ (p.121, ibid).
Resurrection is also about participation. The early church was formed because the witnesses of Christ’s resurrection were transformed by the reality of the resurrection. When one engages pastorally with a disabled person, one participates in the resurrection and similarly will be transformed by that participation. Swinton develops this further to ‘remembering those whom the world has forgotten to participate in the resurrection of people whose personhood and relational possibilities have been destroyed by social forces’ (p.132, ibid). Dismembering, he explains, is to take something apart, ‘re-member’ is to put the broken back together again (p.127, ibid). In saying this, he is suggesting resurrection is also about becoming part of the narrative of the disabled. I mentioned earlier, that story is important in the resurrection of the disabled person, a point I believe is overlooked in models of understanding outlined above. John Hull speaks of resurrection as Transfiguration (p.23, Hull) emphasising that the risen Christ did not leave his body behind and furthermore that his resurrection body was scarred. Likewise the resurrection of the disabled person means seeing the disabled differently, scarred maybe but transfigured by the new dawning of disability awareness, resurrected whole bodies, whole relational people in community and equally able to give and receive love.
If that is resurrection, how then, can the chaplain participate in the resurrection of the disabled person? I will suggest that there is much to be learnt from applying the insights of Liberation Theology to the world-view of the disabled. I will also emphasise the importance of Christian pastoral care in the ‘resurrection.’ Having said that, this essay is not a paper on Liberation Theology or on pastoral care as Applied Theology.
Liberation
I have appreciated Pattison’s approach of applying a Liberation Theology perspective to a mental health care setting, although he admits his examination of Liberation Theology is a limited work. None the less, the underlying purpose of ‘liberation’ fits with our purpose of resurrection. ‘The purpose of liberation theology is to help Christians to understand their liberating praxis and to modify and suggest practical courses of action...It’s basic methodological characteristic is that it is an inductive science ascending from the ground up’ (p.46, Pattison, 1997).
The root of Liberation Theology is in the struggle of the oppressed. ‘The theology of liberation receives its challenge not from atheism, rationalism, secularisation, but from dehumanisation of ordinary people ...’ (p.31, ibid). It is written from the perspective of ‘non-persons, i.e. those who are not considered human by the present social order, the exploited classes, marginalised ethnic groups and despised cultures’ (p.35, ibid). It is my contention that a chaplain can participate in the liberation of the disabled person by drawing along side in pastoral care, by identifying with the disabled in the immediacy of the crisis of the disability and by raising consciousness.
Pastoral Care
The Chaplain as pastoral carer can be drawn into a disabled person’s trauma during the immediacy of the diagnosis or injury. In this role the chaplain plays a part in resurrection through what Furniss calls the ‘ministry of presence’ whereby the chaplain ‘plays an incarnational role representing the companionship of God’ (p.52 Furniss, 1995). Swift writing in the Church Times suggests chaplains are ‘walking prayer boards, offering space for people to voice how the experience of illness might change their life story’ (9th Nov 2007). The chaplain is a pastoral servant whose work is ‘to cure sometimes, to relieve often, to comfort always’ (p.422, Wilkinson, 1988).
Although the definitions of pastoral care vary (Cf. Clebesch and Jaekle in Speck 1988, p.62; Pattison 2000, p.15; Martin 1981, p.193) my own response is informed by Micah 6v8 which says, ‘what He requires of us is this: to do what is just, to show love, and to live in humble fellowship with our God.’ This scripture implies no hidden agenda of evangelistic zeal, excessive pity or patronising attitudes. It simply calls the pastoral carer to ‘show love.’
The chaplain aids resurrection of the disabled person because he goes beyond pathology and focuses on human relationships, personhood and spirituality at the point of crisis. Areas of focus that are often overlooked at times of diagnosis and treatment. Swinton adds, ‘the priority of friends is the personhood of the other and not the illness…. offering a vital counterbalance to positivistic, medicalised approaches’ (p.37, Swinton, 2000). Furthermore, ‘holistic philosophy affirms spirituality as a valid component of care, integral to and not separate from other aspects of care’ (p.49, Greenstreet, 2006). There are aspects of pastoral care that become integral to the patient, recently disabled. The ‘practice of religious ritual can be a source of comfort during difficult circumstances, professionals need to facilitate access to …fulfilling this need and respecting religious and cultural preference when planning care…. The challenge in our hospital institutions is to achieve an ambience to allow prayer, peace and privacy’ (p.50, Ibid).
However, pastoral care is not just about ritual activity but also about the ‘ministry of presence’ alongside those who are trying to make sense of their forced membership into the ranks of the disabled. Tournier and others say that this requires a sharing of the self as well as knowledge (ed. Cox, Campbell, Fulford, 2007). Nouwen advocates making our own experiences available as the pastoral carer empathises with the disabled person, ‘making ones own painful and joyful experiences available as a source of clarification and understanding’ (p.87 Nouwen, 2005 reprint). This ‘requires a number of personal qualities that include sensitivity in communication, moderated love, confidence, an ability to engender hope and hearing expression of the spiritual in metaphor and narrative’(p.56, Greenstreet, 2006). It also requires what Nouwen calls ‘taking distance from ourselves,’ stressing the importance of resisting the temptation to use ones own ‘wounds’ in ministering to those to whom we minister, concentrating on the ‘guest.’ If the chaplain refrains from retelling his story until invited his response is part of his hospitality to the guest and contributes to their resurrection as they struggle to make sense of their current circumstances which ‘undermine personhood and an individuals’ roles in the world’ (p.56, Greenstreet, 2006).
Disabled God
I refer above to Nouwen’s ‘Wounded Healer’ wherein he depicts Christ’s brokenness as our way to health, liberation and new life (p.88, Nouwen, 2005). The wounded healer empathising with the broken person, ‘not offering an ideology but himself’ (p.20 ibid).
Eiesland and Swinton develop this to speak of the ‘Disabled God.’ Christians do not have an able-bodied God as their ‘primal image, rather, the disabled God promises grace through a broken body’ (p.11, Eiseland, 1994). The disabled God ‘does not offer a solution as to why suffering exists…clearly…God exists in solidarity with the world’s suffering. …. and Jesus’ words from the cross are God’s lament for the broken hearted[2] …expressing confusion and pain [that] is the frequent cry of both carer and cared for’ (p.202, Swinton, 2000).
Lament is thus another aspect of pastoral care that aids resurrection. The chaplain can give permission to the disabled to use Psalms and Lamentations to petition God from their depths of despair. Lamentation contributes to resurrection in the same way that faith can turn mourning into joy. Not because the cause of the mourning has been removed, but because, ‘Christ rose from the dead with his wounds [and] we too discover Him in our wounds, and we discern his presence in our vulnerability and in our courage to live the lives we have been given’ (par.59, WCC, 2003).
Finally, I believe there are several, practical aspects of pastoral care that the disabled Chaplain is more able to aid resurrection than his able-bodied counterpart. The wheelchair-based chaplain arrives already seated, already at eye level to the disabled patient. There is no feeling of towering over the guest or of giving negative signals of staying too long (by taking a seat). Being disabled pastoral carer for a disabled person also invites and affirms reciprocity of eye contact, some may define this as empathy. ‘A deep understanding of his own pain makes it possible for him to convert his weakness into strength and to offer his own experience as a source of healing to those who are lost in the darkness of their own misunderstood sufferings’ (p.87, Nouwen, 2005). In some ways the disabled chaplain is an incarnational challenge to the able bodied norm of pastoral care. A challenge both to the medical practitioners (who often marginalise the significance of spiritual care) and to the disabled person, family and friends who have subconsciously adopted a Medical Model approach to the disability. The wounded chaplain declares without words that difference is normal, disability is surmountable, there is life after disability and faith is more than a disabled person’s crutch.
Conclusion
Tom Shakespeare in the BBC’s disability Web site ‘Ouch!’ humorously argues that Jesus could have taken a Social Model of healing rather than a Medical Model in restoring sight and hearing:
“Now, I don't want to be ungrateful here - let's face it, us disabled people need all the help we can get - but isn't this rather a Medical Model miracle? Wouldn't it have been far more awesome had Jesus taken the opportunity to invent Braille? Again and again, Jesus failed to see that Social Model miracles would have made society more inclusive, rather than just correcting individual defects…. And rather than curing the deaf (Mark 7:31), could Jesus not have simply granted the world the gift of Sign Language?” (www.bbc.co.uk/ouch/columnists/tom/191205)
Shakespeare’s irony invites a new way of seeing the disabled perspective, that new vision, I believe, is an important step towards the resurrection of the disabled person.
In this essay, I have examined three models of disability from a chaplain’s perspective. Each model, in some way diminishes personhood of a physically disabled person. In response to this I examined what resurrection of the disabled person means in this context and I have developed this into a discourse on how the chaplain may liberate the disabled person through aspects of pastoral care.
I conclude on a positive note, believing a new day of disability awareness is dawning. From January 2008 we will be smiling at Aardeman’s plasticine creations, disabled characters, Peg the Hedgehog and friends. Each short animation, ends with the message: "Change the way you see disability!" Easter Sunday is for the disabled too. Now is the dawning of the ‘Resurrection of the Disabled Person.’ Metanoia!
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[1] For example, the leper in Mark 1:44, the blind man in Mark 8:26, and the haemorrhaging woman in Luke 8:45ff
[2] Matt.27v46
