The Body of Christ has Down’s Syndrome:
Theological reflections on vulnerability, disability, and Graceful communities.
John Swinton
(Previously published in the The Journal of Pastoral Theology. (2004) ISSN: 1064-9867. Published here with permission)
Over the past year it has been my pleasure to manage a major research project within the United Kingdom that has sought to explore the spiritual lives of people with developmental disabilities and those who offer care and support to them. The project will last for two years and is funded by the Foundation for People with Developmental Disabilities which is a London based charitable organisation. We are right at the half way stage at the moment and there are some fascinating findings beginning to emerge. The more we explore this area and take time to listen to and reflect on the experiences of people with developmental disabilities and their carers, the more apparent it is becoming that this is an area which is of tremendous theological importance for the church. In this paper I want to share some of our initial findings and to give you a feel for the importance of the research and its implications for the ways in which we understand God, human beings and what it might mean for the church to live as a graceful community.
I also want to begin to reflect on what practical theology actually is as a theological and a practical discipline. Many people still have an image of practical theology as simply providing “handy household hints for ministers.” Within this understanding practical theology is a parasitic discipline that simply takes data from the other theological disciplines and attempts to apply them to particular areas of ministry. While practical theology is certainly focused on enhancing the ministry and practice of the church, it is not simply a pragmatic discipline in the sense of merely applying theory. Practical theology is a deeply theological discipline, which seeks to utilise the Kingdom of God as a critical hermeneutic, which can be used to test and determine the authenticity and faithfulness of the practices of the church. A basic definition would be that practical theology is theological reflection on the praxis of the church as it strives to remain faithful to the continuing mission of the Triune God in, to and for the world. Practical theology seeks to guide and critique ecclesial praxis as the church strives to fulfil its role as, to use Lesslie Newbigin’s terms, “the hermeneutic of the gospel.” (Newbigin 1989 pp. 222-223) that is, that place where the gospel is lived out and interpreted to the world through the actions and character of its participants.
L’Arche as a revelation of the way that God loves
Let me begin by clarifying what I mean by the term ‘profound developmental disability.’ Within the United Kingdom the terminology used for this group of people is ‘learning disabilities,’ elsewhere terms such as intellectual disability and mental retardation are common currency. The constant debate about the appropriateness and inappropriateness of terminology indicates the difficulties society has in conceptualising and understanding this group of human beings. For current purposes I will use the term ‘developmental disability,’ a term which has a degree of international recognition and acceptance. Developmental disability refers to group of human beings who are deemed by the majority within society to have limited communicational skills, restricted or no self care skills, significant intellectual and/or cognitive difficulties and who essentially will be dependant upon others for even their most basic needs throughout their lives. The important thing to bear in mind is that within a society that uses the criteria of independence, productivity, intellectual prowess and social position to judge the value of human beings, there will always be questions relating to the value of people with this profound type of disability.
As we have spent time with carers and support workers, one of the things that has struck us is the way in which people’s lives and worldviews have been radically transformed through their encounters with people who have profound developmental disabilities. In encountering people with profound developmental disabilities in friendship, people’s lives are changed, their priorities are reshaped and their vision of God and humanness are altered at their very core. What we are discovering is the occurrence of a process of transvaluation (Young 1990 p. 144) within which personal encounter with people with profound developmental disabilities initiates a movement towards a radically new system of valuing. In this paper I want us to think about this process of transvaluation and to reflect on the potential impact it may have for our theology and practice.
One of the contexts we have explored that has had a particular impact on us is the way of life, manifested within the L’Arche communities. These communities provide a very powerful exemplar of Christian community. A focus on the L’Arche communities will enable us to understand this process of transvaluation and its implications for Christian theology and in so doing, point us towards revised understandings and forms of practice which will enable each of us to live more faithfully as individuals and communities.
L’Arche: A sign of hope
The L'Arche communities are an international network of inclusive communities within which people with developmental disabilities live together with people who do not have such disabilities. L’Arche is founded on the Beatitudes, and in particular Jesus’ teaching that the person who is poor in what society generally values is, in fact, blessed and has deep gifts to offer. L’Arche began in 1964 when Jean Vanier and his spiritual director Father Thomas Philippe, invited two men with profound developmental disabilities, Raphael Simi and Philippe Seux, to come and share their life in the spirit of the gospel and of the Beatitudes. From this first community born in France and rooted in the Roman Catholic tradition, communities have been developed across the globe, the ethos being to share in the lives of people with developmental disabilities in the spirit of the Beatitudes.
L’Arche is a place where disabilities exist, but don’t really matter. In other words, within L’Arche the meaning of disability is very different from the cultural norm. Within the philosophy and theology of L’Arche disabilities are not viewed as problems to be solved, but rather as particular ways of being human which need to be understood, valued and supported. The focus is on discovering ways of loving and living together that recognise the naturalness and beauty of difference and the theological significance of weakness and vulnerability. The L’Arche communities “seek to offer not a solution, but a sign – a sign that a society, to be truly human, must be founded on welcome and respect for the weak and the downtrodden.” (L’Arche Charter in Young 997 p. xv) In a divided world, L’Arche wants to be a sign of hope. (L’Arche International 1999 p. 3) It wants to manifest in its life and practices that the way that society is may not be the way of life within the Kingdom of God.
Loving for the sake of the other
At the heart of L’Arche lies the act of welcoming and accepting. Within the L’Arche communities people with developmental disabilities are accepted and welcomed not for what they can or cannot do, but simply for what they are. In like manner to the way in which Augustine claimed that we do not choose our friends but that they are brought to us by God, so the L’Arche communities welcome all people as gifts which have divine dignity, meaning and purpose. A gift is something to be received with thankfulness and love for what it is, not for what it might become or for what it is not. A gift is loved because it is a gift. Offering care and support to people with profound developmental disabilities is thus not an act of charity, but rather it is an act of faithfulness within which people respond in love to those whom God has given to them.
If those with whom we seek to have communion are understood as gifts, this opens up the possibility of loving people simply for what they are. Now you might not think that the suggestion that we should love people simply for what they are is particularly revolutionary, but it is! Societies such as our own thrive on meritocracy and processes of valuing that are contingent on the exchange of particular social, psychological or material goods. If we are honest with ourselves, most of our relationships are contingent on some kind of benefit that they will bring to ourselves. If our relationships no longer yield this benefit, we have a tendency to move on to forms of relationship that give us what we want. More significantly, this principle often transfers into our spiritual lives. Our relationship with God is often contingent on what God can do for us, rather than on what God is as God. And yet we expect God to love us simply for what we are. This is an important point. David Ford suggests that “the greatest mystery relates to God’s love for us for our own sake and the possibility of loving God for God’s own sake.” (Ford 2002) Think about it, what might it mean simply to love someone for their own sake; not for what they can do for us, but simply for what they are? What might it mean simply to love God for God’s own sake, not for what God can do for us but simply for what God is? When we begin to think in this way it takes us to the heart of the contemplative vocation within which one turns one’s whole being towards God, not because of what one can get out of God, but for God’s sake. (Ford 2002) Only when we can begin to love God for God’s sake and to recognise that we are loved simply for our own sake, can we begin to understand what it means to care for the other simply for their sake.
Reclaiming this contemplative dimension of the pastoral task is vital for authentic pastoral praxis. The apparently simple practice of loving people for what they are, on a deeper reflection turns out to be a profound spiritual exercise which is vital for effective Christian pastoral care. Pastoral care with people who have profound developmental disabilities or indeed of any other human being does not begin with theories of psychology, rehabilitation or human development. Pastoral care that is genuinely Christian begins with the development of forms of practice that will enable people to grow into the discipline of loving God for God’s sake and loving others for their own sake. To do this is much harder than learning an idea or a set of theories. To grow into loving God demands an approach that involves the whole person to be committed to love in every dimension of their being. To grow into loving God demands that as we think about training pastors and pastoral carers, we must expand our standard models of pastoral care and begin to reflect on the role of such things as hospitality (welcoming the stranger as a gift) spiritual direction, contemplation, and spiritual exercises. To grow into loving God demands a community that can support such practices. The L’Arche communities in their practice and liturgical exercises offer a model of such a community and an indication that it might be possible.
L’Arche: A community of gentleness
Within the theology of L’Arche, people with developmental disabilities represent the poor. This poverty is manifested most clearly in the relational isolation and the cultural marginalisation which marks the life experience of many people with this and other forms of disability. (Swinton 200; 2001; Vanier 1992) As Vanier puts it,
The greatest pain is rejection, the feeling that nobody really wants you “like that.” The feeling that you are seen as ugly, dirty, a burden, of no value. That is the pain I have discovered in the heart of our people.” (Vanier 1998 p. 8)
Couple this marginalisation and rejection with the very real spiritual and material poverty which people experience and it quickly becomes clear that the label of ‘poor and oppressed,’ is not altogether inappropriate. (Curtice 2001) The L’Arche communities recognise this poverty and seek to begin their theology from and shape their practices according to the perspective of “the poor.” However, the theology that underpins L’Arche is not a theology of liberation. While L’Arche would wish to emphasise that God is in some sense “on the side of the poor,” the form of practice which emerges from this assumption by that is significantly different from the perspective of liberation theology.
The weakness of God
At the heart of the theology of L’Arche lies a particular image and understanding of God. Within the L’Arche communities God is perceived to be with the poor not as a revolutionary political presence, but as a fellow sufferer who comes into the midst of the poor in weakness and in vulnerability. As Vanier puts it:
It is true that at times Jesus became powerful, he worked great miracles but he feared that people would see in him the Powerful One who does great things instead of the One who seeks to give Communion. So Jesus becomes little, he is humble and this because we admire the powerful, but we love the little ones, the child, the person who is weak, fragile. So for me Jesus is the One who becomes little, he is God who becomes little, who hides in the poor, the humble, the weak, the dying, the sick; because all these people who are particularly fragile are longing for love and I see this as the mystery of Jesus and that Jesus is love. Just as God is Love. Jesus is Love. (Vanier 1997)
It is in the immanence of Christ that the presence of God is experienced and revealed within the L’Arche communities. In this sense there are significant similarities between the theology of L’Arche and Bonhoeffer’s theology of the suffering God as he sketches it in Letters and Papers from Prison. For Bonhoeffer, the power of God is revealed in the suffering of Christ.
“God is weak and powerless in the world, and that is exactly the way, the only way in which he can be with us and help us. Matthew 8:17 makes it crystal clear that it is not by his omnipotence that Christ helps us, but by his weakness and his suffering...only a suffering God can help.” (Bonhoeffer 1953 p. 164)
Bonhoeffer's point is not that the suffering God is helpless but rather that recognising this dimension of God enables us to see new strands of a providential understanding of life. Within L’Arche, these new strands of providential understanding are actualised and worked out within the day-to-day practices of the community. God is with the poor, not in triumphalistic revolution, but in the weakness and vulnerability that is experienced in the everyday tasks of living together in community. Importantly, within this theological frame, the weakness and vulnerability of people with profound developmental disability is not indicative of lives that are incompatible with being fully in God’s image. Quite the opposite, the experiences of people with profound developmental disabilities remind us of dimensions of God which have been hidden by our culture’s preference for such things as power, strength and intellectual prowess.
Idolizing Jesus and the practice of gentleness
Frances young suggests that perhaps one of the most significant dangers for the church today is the idolization of Jesus. (Young 2002) To idolize Jesus is to create Jesus in our own image and according to our own desires. It is to turn Jesus into a kind of superman who is available and willing to grant our every desire, extrapolate us from every unpleasant situation and protect us from the pain, suffering and sickness which is a mark of life in a fallen world. When this happens, we remove the scandal of the cross, the theological significance of Jesus’ littleness and the strength of his weakness and vulnerability that reveals the wisdom of God. When we confuse earthly with divine power we miss dimensions of God that are vital. When power is equated with might, strength and force, we forget the significance of tenderness, gentleness and weakness, dimensions of the incarnated Son which are crucial for a balanced understanding of the Trinitarian God. The communal life of L’Arche and its daily encounters with the weak, the poor and the voiceless, and its ability to see God in the midst of these encounters, moves us away from idolization and the flight from suffering, and forces us to consider the possibility that the nature, character and actions of God may be radically different from our socially constructed norms. When such a reframe occurs, we are freed to explore “hidden” dimensions of God that open up new possibilities for more faithful pastoral practices. If we take one particular attribute that is often overlooked this will help make the point. David Ford, in reflecting on the Beatitudes and the life of Christ, suggests that the life of the L’Arche communities calls forth the theological significance of gentleness. Ford, reflecting on the Beatitudes and Jesus statement “I am gentle,” (Matt 11.29) makes an important point:
“Gentleness is usually practised, if at all, as an optional extra, as something peripheral and secondary. It is nothing short of a revolution to imagine it at the heart not only of individuals but of groups and institutions. But might that be part of the implication of Jesus’ beatitude? Is it conceivable?” (Ford in Young 1997 pp. 82-83)
To conceive of our political institutions being governed by the liberatory principle of gentleness, is indeed unthinkable. To think of our churches governed in ways that are gentle and kind may, sadly, be equally as unthinkable. Yet, Jesus says, “I am gentle.” He does not say that he acts gently, or that gentleness is a good thing to practice. Jesus says that he is gentle; Jesus who is God who is love and in whom the image of God is revealed is gentle in his very being. Gentleness is not an option; it is an aspect of the Divine. And gentleness sits at the heart of the gospel. Jesus who is God enters the world in weakness and vulnerability, dependant on the gentleness of his parents for his very survival. Gentleness was a mark of Jesus’ ministry; gentleness as he gathered children to himself; gentleness as he dealt with the weakness and faithlessness of his disciples; gentleness as he moved his disciples from “discipleship to friendship,” a movement which is very much part of the dynamic of L’Arche; gentleness towards women, the outcast, the marginalized. And gentleness was a mark of his death and resurrection. The gentleness of the women who held and washed his broken, lifeless body, the gentleness of his words towards Thomas in spite of all his doubting. What would our churches be like if we began to develop the virtue of gentleness? How would we lead, how would we teach, how would we relate to one another, what would be the shape of our friendships?
Idealistic, impractical, unworkable? Yet it is precisely this dynamic life of gentleness that is modelled and indeed is a fundamental mark of the way of life within the L’Arche communities. It is precisely this eschatological sign of hope that L’Arche offers to church and world. By living gently,
in the everydayness of attending to bodily functions, feeding and defecating, in the gentle gestures of washing and dressing…the sanctity of bodies [is] acknowledged, but in a context in which their transformation is not through miracles, but through the recognition of God’s love and power in mutual need. (Young 2002)
What develops within L’Arche “is a theology of gentle presence “in communion and community, a kind of contemplative mode of waiting on God with one another, which is far removed from political activism or patronising charity.” (Young 2002) God is the one who comes amongst the poor, who suffers with and for the poor, and in so doing transforms their poverty and brokenness into gentle humanness. Within L’Arche, liberation comes when people begin to let go of their individuality and to recognise the strength that comes from gentleness, mutuality, weakness and brokenness. In this way, those who accompany people in L’Arche find themselves, who they are, what they are, why they are, in the mutuality of life with others.
The Body of Christ has Down’s Syndrome?
This idea of finding oneself in the mutuality of life together with others is important, not least because it reflects something of the dynamic of the Triune God. As John Zizoulas has helpfully highlighted in his reflections on the trinity, God in God’s self is a community within which each person is constituted by the other. Each receives their existence in and through their relationship with the other. God does not exist in what God is for others, but rather in who God is for the particular other. (Zizoulas 1989)
Scottish philosopher John Macmurray (1961/1995) has pointed towards a similar relational dynamic within the development of human personhood. For Macmurray, it is a person’s relationships that constitute who they are as persons. “I exist as an individual only in personal relation to other individuals. Formally stated, ‘I’ am one term in the relation ‘You and I’ which constitutes my existence.” (1995 p. 28) We become who and what we are according to the types of relationships that we experience within our lives. In a very real sense we are responsible for the construction of the personhood of those whom we choose to relate with. This of course is a distinctively counter-cultural position. In Neo-Liberal capitalism, one is offered a picture of human beings as fundamentally individual beings who choose to get together to form societies, the primary purpose of which is to attain the greatest benefits for the largest number of individuals. In other words the individual precedes the community. In contradistinction, Macmurray's formulation proposes that the individual is the product of a community.
For most of us this process of becoming persons-in-relation occurs through interaction with a very limited range of people. For the most part, those whom we become persons-in-relation with are pretty similar to ourselves. We develop our sense of self, our personal constructs and we shape our interpretative universes in dialogue with our partners, pastors, friends, our academic colleagues, and so forth all of whom, for the most part are people who are not particularly different from ourselves. We then assume that the theology and practices which emerge from such interactions are both real and universal. Most people rarely get the opportunity to become persons-in-relation with people whose life experience and existential perspectives are significantly different from their own.
This begs the question of what it would be like if individuals and communities were to become persons-in-relation, with people who have profound developmental disabilities, in other words, to genuinely allow their perspective on the world to become part of their own inner space. How would we approach the task of theology, ministry and being the church, if our theology was constructed in dialogue with people who have profound developmental disabilities; if their “worlds” were brought into dialogue with that which the majority perceive to be the “real” or “normal” world, what would we see? What kind of persons would we become and how would that fresh perspective affect our understandings?
Friendship-in-community
The primary emphasis within L’Arche is on friendship and mutuality-in-community. Within the L’Arche communities it is in and through the relationship of friendship that people are transformed, “reconstructed,” and taught how to be persons-in-relation with those whose life experiences are very different from the perceived norm. It is the relationship of friendship that brings about the type of transvaluation I mentioned earlier. When they meet together in mutually constructive relationships of friendship with people who have profound developmental disabilities, assistants are changed and transformed in significant ways. When this happens, disability is transformed from pathology into mere difference and a genuine mutuality is initiated within which assistants learn not only to respect difference, but actually to incorporate dimensions of the experience of disability into their own lives and worldviews. As the assistants encounter people with developmental disabilities in friendship and community, and as they internalise the radically different experience and perspective that is offered to them, they begin to reconstruct who they are as persons-in-relation both with God and with other human beings. In so doing, their sense of what it means to be human and to live humanly is expanded to include what might be described as the “normality of difference,” that is, the recognition that difference need not be pathological and indeed may be a source of blessing and revelation.
The scandal of the incarnation
This provides assistants with the type of theological perspective that has been explored thus far. It also gives them the freedom to reflect on dimensions of God using concepts that initially appear distinctly odd, to those who have not had this “conversion experience,” but on reflection are deeply challenging. In closing, let me give you an example. One Roman Catholic woman, who is an assistant in a L’Arche community in Belfast in Northern Ireland, told me how difficult it was to live in what remains in many senses a war zone. As a Catholic woman, she is terrified to go out on the streets of Belfast. If she went out alone, she would be in genuine danger. However, if she goes out with the people from the L’Arche communities, she knows that she is always safe. Indeed, when she has people with developmental disabilities with her, she, a Catholic woman, has even been allowed to speak in Protestant churches which is extremely unusual. As we chatted, she made a quite startling statement. “When I am with people with profound developmental disabilities I can go anywhere and say anything. The barriers come down on both sides of the divide, Protestant and Catholic. Wherever they go, they seem to bring peace and reconciliation and if I am with them I can share in that peace. You know, I sometimes wonder if Jesus had Down’s syndrome.” She wasn’t joking. She wasn’t using metaphorical language; her question was wistful but genuine. Her encounters with people with profound developmental disability had changed the way she saw the world and the ways in which she understood God to be at work in the world. Gone were images of God as the bringer of liberation and peace through God’s great power and might. Instead the possibility of God being very different from assumed norms, incarnating God’s self within the body of a person with Down’s syndrome opened up new vistas of hope, reconciliation and revelation. Because she had entered into relationships with people who have profound developmental disability, and allowed those relationships to challenge the way in which she viewed herself, God and the world, the suggestion that Jesus with Down’s syndrome was neither shocking nor outrageous. Why should it be? Nowhere in scripture are we told what Jesus looked like, what his IQ was, why people ridiculed him. We simply assume that Jesus looked “something like us.” Why do we construct an image of Jesus that is able-bodied and able-minded? Why do we explicitly or implicitly assume that Down’s syndrome is inequitable with the divine image? Think for a moment on the implications of Stanley Hauerwas’ reflections on the relationship of disability to the Body of Christ:
“God’s face is the face of the retarded; God’s body is the body of the retarded; God’s being is that of the retarded. For the God we Christians must learn to worship is not a God of self–sufficient power, a God who in self–possession needs no one; rather ours is a God who needs a people, who needs a Son. The Absoluteness of being or power is not a work of the God we have come to know through the cross.” (Hauerwas 1986 p. 178)
Within the L’Arche communities, such an image of God springs naturally from deep relationships of friendship with people whose life experiences challenge us to think and to re-think the nature of God and the glory of Christ, who is the image of God.
Now I am sure that some people are jarring at this point and wrestling with the dissonance between such an image and our personal image of God as all knowing, all-powerful and so forth. But I challenge you to wrestle with why such an image may be disturbing and if it is disturbing, what that might mean for how we really feel about people with developmental disabilities who are made fully in the image of the triune God who is love. If this image is incompatible, then how does that affect the way in which we view and act towards people with developmental disabilities. If the image is compatible, what does that mean for our understanding of what it means to be human and to live humanly in community and fellowship with people with profound developmental disabilities?
Conclusion
In conclusion, what I have tried to do in this paper is to illustrate and work through some of the dynamics of practical theology as a reflective, theological discipline. By reflecting on the lives of people with developmental disabilities as they are conceptualised and worked out within the communities of L’Arche, we have been offered a number of significant theological challenges which call for significant changes in pastoral practice. We have learned the significance of such practices as spiritual direction, contemplation, friendship, hospitality and gentleness for a balanced, trinity-centred model of pastoral care which is applicable not only to the care of people with profound developmental disabilities, but to all people. This of course is exactly as it should be. In the end, people with profound developmental disabilities are no different from anyone else. They have the same needs, desires, hopes, dreams and they are foundational to the shape and texture of the Body of Christ. Indeed, if we take seriously Paul’s metaphor of the Body of Christ, it is clear that their disabilities are our disabilities and our disabilities are their disabilities. The Body of Christ has profound developmental disability. What we all need to do is to begin to learn what it means to live gracefully and faithfully within that Body within which there is ‘neither Jew nor Greek, slave nor free, male nor female … black nor white, able bodied nor handicapped,’ (Young 1991 p. 192) only friends working out the meaning of friendship-in-community.
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