The Wiley-Blackwell Companion to Practical Theology, First Edition. Edited by Bonnie J. Miller-McLemore.© 2012 Blackwell Publishing Ltd. Published 2012 by Blackwell Publishing Ltd.

CHAPTER 42

Disability, Ableism, and Disablism

John Swinton

Disability theology has emerged as people with and without disabilities have begun to highlight the importance of the human experience of disability for theological

refl ection and practice. These writers have come to recognize that theology has mostly been constructed without consideration of the experience of people with disabilities. Consequently, the ways in which particular theological understandings and Christian practices have developed has disadvantaged and at times served to oppress and misrep-resent people with disabilities. By refl ecting theologically on the experiences of human disability, they seek to develop and operationalize revised understandings and interpre-tations of scripture, tradition, and Christian practices. Such refl ection inevitably chal-lenges assumed norms and presuppositions (theological, cultural, and political), and enables church, academy, and society to live more closely with God ’ s intentions.

Disability theology is broad, ecumenical, and interdisciplinary. Perspectives have emerged from within the areas of liberation theology (Eiesland 1994 ), feminist theol-ogy (Creamer 2009 ), systematic theology (Yong 2007 ), practical theology (Swinton 2011 ), and process theology (Pailin 1992 ). Similarly, the fi eld contains a variety of denominational positions including reformed (Reinders 2008 ), Lutheran (Govig 1989 ), Methodist (Young 1986 ), Anglican (Gillibrand 2010 ), Roman Catholic (Vanier 1979 ), and Pentecostalist (Yong 2007 ). Alongside these scholars sit people who are sociolo-gists (Eiesland 1994 ), educationalists (Webb - Mitchell 1994 ), disability workers (Block 2000 ), parents (Govig 1989 ; Gillibrand 2010 ), historians (Keck 1996 ), homileticians (Black 1996 ), ethicists (Hauerwas 1988 ), and biblical scholars (Avalos et al. 2007 ).

Each of these perspectives differs in important ways, as this chapter demonstrates. What they have in common is the shared desire to use their traditions to fi nd ways of positively reframing disability and opening up conceptual, theological, and physical space for people with disabilities. In what follows I will offer an overview of some of the key themes within the fi eld before moving on to explore the implications for practical theology.

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What Is Disability?

An important place to begin is with the question of defi nition. The way a person defi nes an entity will determine how she responds to it. At one level the nature of disability, like “ blackness ” or “ gender, ” appears obvious. People with disabilities have certain physical or psychological differences or impairments that bring them to society ’ s atten-tion. These differences are judged to be problematic and require some form of interven-tion. Normally this would include treatment or rehabilitation designed to bring people into line with the expected norm and to enable them to enjoy fullness of life, as judged by the accepted norm of any particular culture or context. The assumption is that the reason someone may not be experiencing fullness of life is directly related to the par-ticular impairment that they encounter in their lives: their disability.

Historically, it has been assumed that disability resides within the domain of the medical and rehabilitation professions which see their task as bringing persons into as close an approximation of the norm as possible. The movement here is from the inside outward – ridding the person of their internal “ bad spot ” and moving them toward freedom from disability and acceptance by the world outside the individual.

The theological correlate to this process of medicalizing disability is found in the ancient and modern tendency of the church to associate disability with sin and human fallenness. Here the assumption is that the difference within the individual is the con-sequence of sin: theirs, their families ’ , that of a member of their lineage, or just plain old original sin! Either way the problem lies fi rmly within the individual. Here, the church in its healing ministry fulfi lls a similar role to the medical and rehabilitations services, that of returning the individual to as close an approximation of the accepted norm as possible. In both cases – medical/rehabilitative and theological/healing – the response assumes that “ disability ” resides within and is fully owned by the individual.

In various ways theologies of disability work on the presupposition that standard accounts, which seek to locate disability solely within individuals, are fundamentally fl awed. Disability is not a personal tragedy that resides primarily within individual minds or bodies. Disability is a social experience that is shaped and formed by the particular context in which a person ’ s perceived difference is experienced. A person may have specifi c impairments (blindness, deafness, and so forth), but these need not be disabling. It is the negative reactions of society to these impairments that is disabling.

This movement from the personal to the social raises a hermeneutic of suspicion with regard to the ways in which the church has interpreted disability. If disability is not essentialized, if it is seen as a social and cultural construction, then it may well be that theological understandings have been developed on premises that have arisen from cultural rather than theological assumptions. That being so, it is necessary to develop a new hermeneutic that takes seriously the experience of impairment and the social construction of our understandings of these meanings. This in turn will lead us to revise our theology and practice in the light of such a hermeneutic.

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Disablism and Liberation

Disability is open to a variety of theological and social constructions. These construc-tions can lead to positive new insights and ways of living together, or they can lead to marginalization, exclusion, injustice, and oppression. Sadly the latter construction is more prevalent than the former. Consequently, a strong theme within the literature focuses on the ways in which disability is constructed to lead to oppression. Here disabil-ity is defi ned by people ’ s status as a minority group . Disability is not defi ned by any particular impairment or difference. What forms the core of “ disability ” is the recogni-tion of a shared experience of oppression, marginalization, and injustice. To be disabled is to be oppressed. Alongside of racism and sexism a new term has emerged: disablism .

Theologically, disablism works itself out in, for example, the refusal of some churches to ordain people with disabilities, lack of access in terms of both the physical environ-ment and theological construction, lack of inclusive theological symbols (e.g., images of God as able - bodied), and healing miracles associating disability with sin (Monteith 2005 ).

In response to such experiences of ecclesiological injustice, a number of writers have sought to combine the social constructionist perspective with insights from liberation theology to provide a way of rethinking theology and practice. In her book The Disabled God , Nancy Eiesland presents a theological response to marginalization by developing a contextual theology that perceives God as disabled. Her task is to resymbolize the Christian tradition, to do away with symbols that serve to oppress people with disabili-ties, and to replace them with new symbols which better facilitate theological inclusion. Her primary focus for resymbolization is God. Refl ecting on Luke 24:36 – 39 she offers a challenge to established images of God:

While they were still talking about this, Jesus himself stood among them and said to them, “ Peace be with you. ” They were startled and frightened, thinking they saw a ghost. He said to them, “ Why are you troubled, and why do doubts rise in your minds? Look at my hands and my feet. It is I myself ! Touch me and see; a ghost does not have fl esh and bones, as you see I have. (NIV)

Here we fi nd the disciples encountering the risen Christ. The startling thing is that the risen Christ still carries the wounds of the crucifi xion. In other words, the risen Christ is disabled. If this is so, then human impairments as they are now are fully equitable with our image of the Divine and our eschatological hopes rather than indicative of the limitations of personhood, beauty, perfection, or desirability. Disability is incorporated within the life (and the body) of the Divine. In recreating God as disabled, she neutral-izes arguments that equate disability with sinfulness or suggest that people with disabili-ties are inferior, in need of healing, or have bodies that will require transformation in the eschaton. The disabled God is truly with the disabled in their physical impairment and social marginalization. Being disabled is completely equitable with full personhood. There is therefore no theological justifi cation for the exclusion, marginalization, or

446 JOHN SWINTON

oppression of people with disabilities inside or outside of the church. Fighting for the rights of people with disabilities is a theological as well as a political necessity.

God is not only with people who have disabilities in terms of presence; God is with them ontologically . This ontologizing of disability within God appears as a methodologi-cal approach throughout the fi eld. God is shown to be limited (Creamer 2009 ), deaf (Morris 2008 ), blind (Hull 2001 ), crippled (Lewis 1982 ), interdependent (Black 1996 ), accessible; God is imagined as having Down ’ s syndrome (Swinton 2003 ) and even bipolar disorder (Helsel 2009 )! In this way, the clear statement is: To reject the disabled because they are disabled is to reject God . This opens the way for political action that is theologically grounded and ecclesially transformative.

At a political level, theologies that utilize this approach have much to offer. If God is disabled, then exclusive and excluding practices cannot be tolerated. Disablism is a theological as well as a political issue. God is a God of justice and it is right that the church should stand against injustice in all of its forms. Nevertheless, such approaches are not without their problems.

The underlying assumption seems to be that the starting point for theological con-struction is human experience. Writers use cultural and sociological analysis to reveal the injustices experienced by people with disabilities. A response to this injustice is then sought by moving to theology. However, very often the conversation between social analy-sis and theology tends to move only one way: from the experience of disability toward changes in theology. Experience raises the questions and theology responds to them by changing in line with the goals of experience. Experience is changed through analysis of experience. Theology ’ s role is quite compliant. This leads to two important problems.

First, theology simply responds to the insights of sociology. There is no clear theologi-cal voice which can effectively challenge the sociological analysis. The premises are set before the conversation begins. If the theological agenda is simply driven by an uncriti-cal acceptance of sociological analysis, then theology will have little to say when society makes decisions that jeopardize the position of people with disabilities. Uncritical acceptance of prenatal testing for disability is a good example of such dangers.

Second, the idea that disability should be defi ned by people ’ s experience as an oppressed minority group becomes problematic when it is tested against the experiences of people who are not and cannot be a part of any politically active group, such as those with profound intellectual disabilities or advanced dementia. The theologies of libera-tion focus on enabling people to achieve autonomy, freedom, civil rights, self - representation, and political access. However, these goals are unobtainable by those with certain disabilities; they are precisely the qualities that people with dementia are in the process of losing and people with intellectual disabilities never had. Hence minor-ity group models can end up being exclusive rather than inclusive. My point here is not that these approaches are wrong. They are, however, inadequate.

Theologies of Limits, Vulnerability, and Interdependence

Such concerns have not gone unnoticed within the fi eld. Systematic theologian Deborah Creamer ’ s limit model of disability, for example, recognizes some of the problems with

DISABILITY, ABLEISM, AND DISABLISM 447

the political and civil rights approaches and seeks to fi nd a middle way that holds onto the important aspects of the minority rights approach but opens up to include the full range of human disability.

Creamer argues that a medical approach to disability suggests that particular impair-ments should be seen as limitations. However, “ limits ” need not be equated with “ prob-lems. ” The limits that emerge from disability are but an instance of the overall limited condition of all human beings. In making this claim, she draws our attention to the distinction between “ limits ” and “ limitations. ” The limits of human existence need not be negativized into limitations: “ our limits need not (and ought not) be seen as negative, but rather . . . they are an important part of being human ” (Creamer 2009 : 64). Limits are neutral and universal attributes of human beings. They are nothing more than aspects of what it means to be human. Certain forms of impairment will certainly limit us from doing some things. (If I am blind I won ’ t be able to drive.) However, such a limit is but one example of the human condition and need not be turned into pathology. Creamer thus draws attention to the fact that disability is not an exceptional case, but simply a concentrated example that reminds us of the nature of all human beings.

This move to break down the boundaries between disability and able - bodiedness is developed in a slightly different direction by Tom Reynolds, another systematic theolo-gian. Like Creamer, Reynolds seeks a middle way that takes disability rights seriously but deals with the problems of such an approach. He moves from his own experience as the father of a disabled son toward a challenge to the accepted norms of modernity. Reynolds argues that our true state is one of vulnerability and dependence. The empiri-cal evidence for this is obvious but deeply occluded by cultural presumptions about the value of autonomy and independence. Drawing on a Foucauldian analysis of culture, he argues that “ normalcy operates as a cultural system of social control ” (Reynolds 2008 : 48). Human beings desire to belong and to be recognized positively. The general tendency is to try to fi t into cultural and social patterns that are meaningful, accepted, and valuable. Normality thus emerges from collective understandings of what is “ good ” and what is to be valued. If our lives reveal that which is valued in our society, we are recognized and valued. Otherwise we are not. There is a “ cult of normalcy ” that regu-lates acceptability. Within this cult, the units of exchange are “ body capital ” ; value is inscribed on individual bodies according to the dictates of the institutions that con-struct normality. Disabled bodies do not fi t because they do not contain the body capital necessary to participate in the accepted economy of exchange. This is why people fear and reject disabled bodies.

However, viewed theologically, such cultural assumptions are fundamentally fl awed. Rather than being defi cient in body capital, such bodies reveal the defi ciency of the accepted economy of exchange. The empirical evidence is that human beings are dependent on one another to become persons: “ I am because we are. ” The natural state of human beings is dependence and vulnerability. If we are dependent on others for our very being, then we are necessarily vulnerable to rejection, exploitation, loneliness, and suffering. That being so, an acceptance of vulnerability actually opens up possibilities for recognizing the other and welcoming them into relationships that are marked by mutual vulnerability and care. A recognition of vulnerability opens up a space for love: “ Fundamentally, love involves welcoming another into a space of mutual vulnerability ”

448 JOHN SWINTON

(Reynolds 2008 : 119). Thus, a focus on vulnerability acts as a theological solvent that dissolves the boundaries between able - bodiedness and disability.

Creamer ’ s and Reynolds ’ s perspectives on limits and vulnerability lead us into a strand of disability theology that, in a strange reversal of the political perspective, focuses on the important role that disability plays in revealing the vulnerability and limitedness of all human beings. Liberationist theologies focus on empowerment through political participation; this group of theologies focus on revelation through the recognition of shared weakness. In the latter understanding, disability is not perceived as qualitatively different from able - bodiedness. As embodied beings, all people are made in God ’ s image and all people are subject to the limitations of biological existence, with its multiple variations and unpredictable outcomes. To be in the image of God is not to be independent, powerful, and autonomous. Quite the opposite. To live in God ’ s image is to recognize one ’ s limitations, vulnerabilities, and dependence. From this perspective, the politics of disability and the evils of disablism are not necessarily insignifi cant, just penultimate. What is ultimate is who we are before God. It is here that disability throws fresh light on the nature of humanness.

While Creamer and Reynolds lead us beyond politics and into new theological waters, both still want to hold onto the essence of the minority group approach. Two theolo-gians with a different perspective are ethicists Stanley Hauerwas and Hans Reinders. Both are highly skeptical about the ability of modernity to offer meaningful liberation. Their aim is to challenge the goals of modernity and open up understandings of God and human beings that stand in stark contrast to societal expectations. Their focus is on people with profound intellectual disabilities, that is, people with limited commu-nicational skills, restricted or no self - care skills, and signifi cant intellectual and/or cognitive diffi culties who will require some kind of full - time care throughout their lives. Hauerwas sees such disabled lives as a way of cracking open the illusions of modernity:

Quite simply, the challenge of learning to know, to be with, and care for the retarded [sic] is nothing less than learning to know, be with, and love God. 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 - suffi cient power, a god who in self - possession needs no one; rather ours is a God who needs a people, who needs a son. Absoluteness of being or power is not a work of the God we have come to know through the cross of Christ. ( 1988 : 104)

The powerlessness, dependency, vulnerability, and weakness that mark the lives of people with profound intellectual disabilities reveal fundamental truths about God ’ s nature and the place of human beings. We are creatures , wholly dependent on God for all things and at all times. Human beings are fi nite and contingent. Powerlessness, vul-nerability, and a lack of power are simply part of who we are as creatures before God.

Reinders develops this point, arguing that human personhood and value are neces-sarily ecstatic , that is from elsewhere or a gift of the Spirit. All human life is a gift, a product of God ’ s loving friendship that is given without any demand for reciprocity. For Reinders (2008) the primary descriptive metaphor that captures human neediness and God ’ s desire to meet it is the relationship of friendship. God chooses human beings as

DISABILITY, ABLEISM, AND DISABLISM 449

friends, not because of what they can or cannot do, but simply because that is what God does. Put slightly differently, full humanity is not an aspect of teleology or human potentiality (that is, the product of our activities or abilities). Rather it is primordially and graciously given through God ’ s willingness to enter into friendships with human beings. The ultimate outcome of this process is that eschatologically the perichoretic movement of the Divine community (the mutual interpenetration and indwelling within the threefold nature of the Trinity) will include all human beings, not because of their abilities or inabilities, but simply because they are loved.

Theologies that focus on limits, dependence, and vulnerability overcome some of the problems highlighted around the liberationist models. These approaches do not neces-sarily run contrary to the politics of disability, although there is a clear clash on certain key points. They are not, however, without problems.

First, the theological movement here is quite different from the politically oriented theologies. In the movement from experience to theology and back to experience, the underlying assumption is that theology necessarily trumps experience. Experience is necessary for the purposes of raising the issues but theology is the place where the answers are discovered. The conversation is, once again, one way, this time with theol-ogy taking primacy over experience. Moreover, this raises the troubling question of whether there is such a thing as a pure or orthodox theology separate from experience and its infl uence.

Second, there is an important tension between the eschatological church and the sociological church. It is certainly true that limits, vulnerability, and powerlessness are marks of creaturely existence. However, in a fallen world, those who are perceived as weak, vulnerable, and powerless are precisely those who are most likely to be abused. The emphasis on vulnerability must be tempered with a closer refl ection on sin and the gospel call to protect the weak. Politics and political actions for justice may actually be a necessary correlate of the recognition of powerlessness and vulnerability in a world that is riven by sin.

Practical Theology and Disability Theology

What then can practical theology learn from its encounter with theologies of disability and what might they learn from it?

Theology is d esigned for p ractice

The fi rst thing to notice is that it is impossible to study disability without engaging with experience. This might sound like an obvious point, but it is nonetheless pertinent. All theology is practical and should primarily be aimed at enabling the church to participate faithfully in God ’ s mission in, to, and for the world. However, it is very easy for this to be forgotten within the day - to - day thrust of the academy. Systematic, histori-cal, and philosophical theologians tend not to want to be seen as “ practical, ” and practical theologians often have little desire to be seen as “ theoreticians ” ! However, refl ection on the way that the fi eld of disability theology has developed seems to push

450 JOHN SWINTON

theology back to its true purpose. When faced with the realities of human experience, the theory – practice gap inevitably closes down, offering an important challenge to the disciplinary boundaries within the theology faculty. As soon as systematic theologians, church historians, and biblical scholars begin to deal directly with human experience, they inevitably drift into some form of practical theology. Consequently, a primary task of practical theology is to remind the theological faculty that experience is not epiphe-nomenal to the theological task and to help all of the disciplines reclaim what theology is for . This is not intended to sound polemical. It is simply an invitation for systematic theologians and biblical scholars to take seriously the theological and the practical task that is theology and for practical theologians to be confi dent that their contribution is necessary and faithful. Refl ection on the multidisciplinary nature of disability theology helps us engage with this point.

Practical t heology as a c ontinuum

That some of the most prominent disability theologians are not practical theologians, and indeed are not formal theologians at all, emphasizes the signifi cance of critical correlation and the necessity of dialogue with partners outside practical theology. To the question “ Do you have to be an academic theologian to be a good practical theolo-gian? ” the answer is no. However, the types of theological tensions that were high-lighted above indicate that there remains a need for formally trained practical theologians who can see the necessary connections between the tradition, the practices of the church, and other forms of knowledge and can act and advise accordingly. Put slightly differently, the method of critical correlation is necessary for the fi eld of disabil-ity theology in all of its dimensions. A way of looking at this is by viewing practical theology as a continuum requiring different degrees of competence, moving from gen-eralists, who are not trained in formal theology but may conceive of an important issue and wish to refl ect on it theologically but not have the formal tools to do so, through to specialists who are academically trained practical theologians with the knowledge and methodological approaches necessary for critical engagement with the issues. Along the continuum systematic theologians, biblical scholars, and church historians who have the interest and expertise can be enabled to engage with practically oriented conversation partners who can help them develop a creative interface between aca-demic theology and the practices of church and world. By revealing ways in which it is possible to engage in meaningful critical conversations along the continuum, the fi eld of disability theology provides a useful example of what such a continuum might look like in practice. As such it is a vital area for practical theological refl ection even if practi-cal theologians seem reluctant to engage in it.

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