Why Theology Needs Disability

Abstract

This article explores the emerging field of theology and disability studies, beginning with an introduction to disability studies before moving on to consider what significance a disability perspective may have for theology. The author argues that in the same way, disability studies critique cultural ideals of autonomy and self-sufficiency; it can likewise critique theology’s participation in these cultural ideals. Using the theological term “image of Christ” and a case study of the L’Arche communities, the author shows how disability can teach us that relationality, and not autonomy, more rightly defines what it means to be human.

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The title of this article is problematic, for as Thomas Reynolds notes, “Employing disability for mere theological gain is to be vigilantly guarded against” (40). With that danger in mind, my aim here is to suggest more than that the Church needs to be open to disabled persons to fulfill its call to care for “the least of these.” Likewise, I intend something other than putting disabled people on a pedestal as God’s children who can teach us a pearl of secret wisdom. Rather, I aim to suggest that the church needs a theology of disability to deconstruct societal and theological ideals of self-sufficiency and autonomy and to reconstruct ideas of community born in vulnerability, weakness, and dependency.

Disability Studies

Before getting to the theological potential of disability, however, an introduction to the field of disability studies is in order, followed by a discussion of the social priority given to autonomy and self-sufficiency. Disability Studies attempts to wrestle the meaning of disability away from the medical model of disability that has dominated Western understandings for a couple of centuries. The medical model’s goal is to rehab, or “fix,” persons with disabilities so they can be re-entered into society as “productive” members. Christopher Newell writes, “Disability, in this model, is almost universally a negative analysis because it concentrates on the idea of disability as a loss of function in one way or another. Disability is, therefore, ’a lack, a deficit, an inability…disability is a problem that an individual experiences; it represents a deviation from a state of normality because of an impairment.’” [i]  Though the medical model has accomplished incredible feats of science to help disabled people, it has simultaneously objectified the same people as problems to be solved, as patients subservient to the authority of “healing” medicine and, at its worse, as social deviants that must be separated or even eliminated from society in order to keep intact societal norms.  

In contrast to the medical model, disability studies provide a social model for understanding disability that relocates the problem of disability. Jackie Leach Scully puts it succinctly, “The social model’s most fundamental criticism of the medical model is that it wrongly locates ‘the problem’ of disability in the individual and neglects the social and structural.” [ii]  While the medical perspective tries to fix an individual’s impairment, Disability Studies explores how the true impairment is in society’s response to disability, not in an individual’s inability to be “normal” and/or “productive.”  

Allow me to provide an overly simplistic example of the social construction of disability. If a person needs to get to the 4th floor of a building that has no elevator, and this person is in a wheelchair, she has a very definite disability. 

However, if the building has an elevator, the person is not un-able to get to the 4th floor; thus the person is not disabled. For disability studies, the problem is not a matter of physical or mental impotence, but a moral/ethical prejudging of the abnormal according to socially defined hierarchies. Therefore, the problem to be fixed sits in the middle of society, not the middle of a wheelchair. For another overly simplistic example, in a society built upon, infused with and empowered by competition and efficiency, persons with profound developmental disabilities are considered highly deficient and disabled. However, if our society were based upon affection or giving, many of these “disabled” people would become our teachers, as Henri Nouwen found at Daybreak, or as Jean Vanier learned 40 years ago when he co-founded the L’Arche communities.[iii]  

The medicalized perspective, which tends to define healing as “an individual’s bodily adjustment to fit society’s definition of normalcy,” [iv] has reached far beyond the medical establishment and become pervasive in our society. When this definition is used, persons with disabilities get totalized according to their disabilities, because the un- “healed” person is considered un- “normal” and is consequently viewed primarily according to the abnormality. 

As the whole of society has taken on this medicalized perspective, it has come to view persons with disabilities as deficient people and relates to them according to an understood lack instead of a presumed wholeness.

Perhaps you have seen the credit card commercial run around the holidays where people are filing in and around and out of a toy store all in perfect unison, all swiping their credit cards. Then one person pulls out a checkbook, or cash, and the entire flow of the orchestrated movement is disrupted. People bump into one another, toys crash to the floor and everyone stares at the person “lame” enough to not have a credit card. I purposefully used the word “lame” in that last sentence, because its use as slang belies how similarly our society views persons with disability. Persons who are lame are understood as a disruption of the flow of self-sufficient and autonomous people needed for democracy and a free market. The possibility of the lame needing help impinges upon the independence and autonomy of those with whom they come into contact.  

Autonomy

The ideal of self-sufficient autonomy runs deep in our history and social psyche. Thomas Reynolds names these ideals the “cult of normalcy,” the roots of which he traces to the very founding of the nation. He argues, “The liberal Enlightenment picture of the person portrays an autonomous and self-determining individual capable of entering into social collaboration on the basis of rational self-interest. Reason is that which enables us to govern our own lives . . . and its benchmark is autonomy.” [v]  While this social contract has created great opportunities for many, and even allowed minorities to seek equal rights, it also has a darker side. Reynolds goes on to explain from a disability perspective what is problematic about American “equality,” autonomy and self-sufficiency. 

Ironically, “equality” ends up meaning “like the majority.” 

Equality is defined by certain limitations. For a democratic society, self-sufficiency and reason are part of the definition of equality. For disabled persons, “equality” too often means pressure to pass as able-bodied, to become like the majority and a “productive” member of society. “The result,” Reynolds notes, “is either assimilation through processes of normalization or exclusion through processes of marginalization or confinement.” [vi]

Reynolds also questions the ideals of self-sufficiency and autonomy upon which our culture is based. He writes, “[I]t is presumed that the individual is self-sufficient and prior to society, having dignity and self-directed character that precedes the relationships that tie her or him to a social world. This is a false abstraction.” [vii]  Besides ignoring those who are not self-sufficient, this ideal prioritizes the individual over his or her social context. In contrast, Reynolds argues that we do not simply show up as completely self-sufficient persons. Rather, we become people only within the influence of others. “The idea of an autonomous and self-constituting person is an illusion. It neglects the role community has in identity formation. Relation with others is primary, not secondary.” Despite this truth, the ideals of self-sufficiency and autonomy are so ingrained in our culture that they dominate our understandings of health and wholeness, to the point that “[d]ependence upon others is often deemed a moral, developmental, or biological failure, a passivity denigrating human life . . . The display of neediness becomes a source of shame, something to be hidden from others.” [viii]   All the while, the irony is that complete autonomy is a sham. We all live within elaborate webs of dependency. We are all shaped by those who raised us, those who taught us, those who led us, those who became our friends. But our ideal of individual autonomy continually denies this truth and thus suggests deficiencies or deviations from the norm are tragedies for which individuals are ultimately responsible.

Theology

This critique of autonomy leads to the theological potential of a disability studies perspective. I do not mean potential in the sense of an untested theory. Rather, the potential lies in the possibility of restructuring societal and theological norms. Before getting to these possibilities, however, we must confess our participation in societal disregard for disability. The Church has not been exempt from the larger society’s tendency to consider persons with disabilities as persons with tragedies that are personal and need to be fixed before such persons can have communal currency. In fact, the medical model has received its most complete utopian vision in the hands of theologians and pastors who have wedded this socially constructed perspective with scriptural promises of eschatological perfection, and often of a similar model here and now, as is the case with the health and wealth gospel and its many derivatives. The resulting view of most churchgoers is a belief that those with disabilities are un-whole individuals.  

Helen Betenbaugh writes about how this perspective affected her own disabled journey to becoming a priest, “I sometimes ponder the incredible fact that I stayed in the church, that I struggled and struggled against its “truths” as I did. Segregated by lack of access, we are told by architecture and the environment that we are unwanted, inferior. We are told that we have an obligation to be cured by the prayers of the church rather than healed by people’s acceptance of us as we are. Ableism is a pathology, just like ageism, just like racism. We demonize those bodily states that we fear.” [ix]   

Betenbaugh’s long struggle to follow her calling into the priesthood was not hindered by her own disability as much as by the social factors, architecture, and environment that told her she was unwanted and inferior. 

These social determinates came to her most forcefully in letters of rejection from the bishops to whom she applied to the priesthood, letters in which she and her wheelchair were labeled “unemployable.” [x]  Just as disability studies have to challenge the medical definition of normalcy, the first step for a theology of disability is to challenge the theological assumptions based on many of the same social ideals. But be warned, this can be no simple task. As Nancy Eisland puts it in The Disabled God, “Justice for people with disabilities requires that the theological and ritual foundations of the church be shaken.” [xi]  

Anyone living in the United States today breathes in the ideal of a “perfect, self-sufficient body,” whether or not that person is able-bodied. 

Disabled persons thus often internalize the cult of normalcy, using it to measure their self-worth. Betenbaugh writes about when she first felt called to be a priest, “[I]t seemed perverse to me. The priest is an icon of Christ—of wholeness, of all that is good and right and ‘perfect.’ Certainly there was no place for such visible brokenness, such visible ‘failure’ as mine, in the priesthood of the church.”

As she painfully struggled with the dissonance between her body and the “perfect” body ideal of Christ, she slowly came to realize a new theological perspective – one borne out of her disability, not in spite of it. 

“I came to see that the symbol I would present would be that of an Easter life, an Easter faith, being lived in a Good Friday body. To me, then and now, that is a positive sign, an authentic sign, a holy sign. I am bold enough to say that it more clearly reflects the truth of most people’s lives than a ‘perfect’ body does.” [xii]  She is right to suggest we all live closer to a Good Friday body than a “perfect” body, and she is also right to note that this is a bold statement. Her acceptance of her disability flatly contradicts our nation’s mythologies and ideals that center on self-sufficient autonomy. Her self-identification with a Good Friday body names ableism as the actual disability, a pathology like ageism or racism. 

I suggest this realization of our Good Friday bodies is one of the most significant insights disability offers theology. I am not, however, saying persons with disabilities are physical examples to us that help the able-bodied remember we are all broken on the inside. Rather, I am suggesting that persons with disabilities live with an embodied vulnerability that is essential to being human. In his book Vulnerable Communion, Thomas Reynolds writes, “This is not a moral lesson that people with disabilities teach non-disabled persons; it is rather an opening to the humanity of disabled and non-disabled persons alike.” [xiii]  When disability gets used as a mere theological example, disability and vulnerability become a means to a more perfect end. What I want to suggest is something quite different – vulnerability as the goal. As Reynolds succinctly and beautifully puts it, “Vulnerability and dependence is normal.” [xiv]

Theology needs disability in a similar way to how the church needs fasting. Just as fasting is an embodied reminder that we are more dependent upon God than even food, disability is an embodied reminder of our vulnerability in and dependence upon a community. As anyone that has fasted knows, however, fasting is more than a mere reminder. It is a living into the true reality of our condition as dependent human beings.  

The Image of Christ

Dependency and vulnerability cannot be understood better anywhere than in the image of Christ. Applying a disability perspective to theology changes our very perceptions of God. Hauerwas writes, “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.” [xv]  

Theology’s ever-present danger is the inevitability of making God out of the clay of our personal and national ideals. Burton Cooper suggests we tend to think of God’s attributes as unlimited extensions of our best attributes. We imagine God’s power is like ours, except without limitation. “Thus, human ‘ableness’ provides us with the image to think about God’s power.” However, Cooper suggests, viewing God as disabled helps us breaks this tendency. 

A disabled “image of God jars us out of our tendency to conceive God as ‘unlimitedly’ able. It reminds us to think of God’s power christologi-cally—God’s being with us, suffering with us, broken for us.” [xvi]  

Christ, and thus God, as disabled, is the starting point for any theology of disability. Scripture is clear that God is more powerful than human beings, yet it is not through our understandings of power that the Word becomes flesh. Rather, it is the power of limitation, humility, vulnerability – a baby is born fragile and entirely dependent. Likewise, at the end of Christ’s mission, the plan for salvation is not one that participates in the principalities and powers of this age, whether political or social. Cooper writes, “Jesus on the cross is God disabled, made weak and vulnerable to worldly powers because of the perfection of divine love.” He goes on to write that this image of the disabled God “reminds us that, from a Christological perspective, God’s perfection, God’s goodness, God’s identity are so far from transcending the suffering of the world that they participate deeply and unavoidably in that very suffering.” [xvii]  

Quite counter to cultural understandings of perfection, divine perfection is revealed in the unlimited vulnerability of the incarnation and the cross. 

The perfection Jesus commands in the beatitudes (Mt. 5:48), to be perfect as your heavenly Father is perfect, is a perfection born of this vulnerability and dependency. It is not born of self-sufficient legalism or absolute power. Even after the resurrection, Christ’s body is not conformed to what we would recognize as “perfect.” He instead appears before the disciples in a disabled body, his disability functioning as the confirmation of his Messianic identity. He invites Thomas to put his hand in his side (Jn 20:27). This is no mere scar for the sake of remembering. It is a body eternally impaled by the mere dust that once made up nails and a spear.  

This image of the disabled Christ and God also helps us realize one of the greatest theological potentials of a disability perspective – that is, the significance of relating. Eisland writes, “To posit a Jesus Christ who needs care and mutuality as essential to human-divine survival does not symbolize either humanity or divinity as powerless. Instead, it debunks the myth of individualism and hierarchical orders, in which transcendence means breaking free of encumbrances and needing nobody and [instead] constitutes the divine as somebody in relation to other bodies.” [xviii]  God was broken for the sake of a relationship with broken humanity.

Reynolds suggests that disability serves theology as “a profound symbol of human brokenness.” When we push away those we consider abnormal and deficient, “we shun what is perhaps most human about us – the need to belong and to be recognized as of value. We all at the core are vulnerable and receive our existence from one another . . . Learning to embrace ourselves and others as we are, in our specific weaknesses, releases us from narcissistic self-enclosure and empowers us to risk the openness of genuine relationship.” [xix]  These genuine relationships make us whole persons, a wholeness achieved not despite vulnerability and disability but through them. As communion with God is dependent upon the broken body of Christ, so communion with one another is dependent upon our realization of and participation in our universal human brokenness.  

L’Arche

As a sort of case study, let us consider a group of communities around the world that has done more than theorize about these truths they have been living for decades. The first L’Arche community began in 1964, in France, when Jean Vanier decided to share his life with three men with disabilities. There are now over 135 communities in 36 countries. 

In these homes, people with and without intellectual disabilities live together in a community with the purpose of realizing the unique gifts of each individual. There is no separation of “disabled” from “normal.” All in the house are normal, and all are disabled, and all have unique gifts that are only realized in communion with the others. 

John Swinton managed a research project in the UK that explored the spiritual lives of persons with developmental disabilities and their caregivers. One of the primary groups the project studied was L’Arche communities. He reflected on the project in an article entitled “The Body of Christ has Down Syndrome.” The first thing Swinton notes is that as the research team spent time with carers and support workers, they were struck by “the way in which people’s lives and worldviews have been radically transformed through their encounters with people who have profound developmental disabilities. [Their] lives are changed, their priorities are reshaped, and their vision of God and humanness are altered at their very core.” Following Frances Young, he names this “a process of transvaluation within which personal encounter with people with profound developmental disabilities initiates a movement towards a radically new system of valuing.” [xx]

           That new system of valuing prioritizes learning to love and to be loved, and it embraces vulnerability as the locus of a life that realizes or makes real relationships of love. In contrast to the medical model that seeks to “fix” the “problems” of developmental disabilities or to manage the problems found unfixable or to provide the prenatal testing that would make these “problems” disappear altogether, this transvaluation results in a deep valuing of those with developmental disabilities. Similarly, in contrast to a liberatory theology whose goal is to fix the situation of the poor, Swinton argues, “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 . . . [T]he 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.” [xxi]  This is not to begrudge the good of liberation theology, only to offer a balanced view that reminds us of the flaws of every theological system.  

Cultural ideals and theologies that focus on the triumph of individuals have created a fear of limitation and suffering. Those with visible deficiencies have become stigmatized by culture as deviants because they embody our fears of failure and death. 

However, “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.” [xxii]  Rather than liberation being an extraction from circumstances that are painful and broken, at L’Arche, “liberation comes when people begin to let go of their individuality and to recognize 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.” [xxiii]  The assistants “begin to reconstruct who they are as persons-in-relation both with God and with other human beings.” [xxiv]  

           At L’Arche, we find a lived experience of a theology of disability that considers the limitations of the incarnation and the disabilities of the cross. We see a community that embodies the mystery Paul speaks of in 1 Corinthians that “God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things” (1 Cor. 1:27-28). In fact, God chose the cross, which Paul names in a single verse as “foolishness” to this world and yet “the power of God” (1 Cor. 1:20). At L’Arche we find that the things our societal standards have labeled as weak, foolish, and disposable actually hold within them the true power of living and loving. Those who are willing to be vulnerable, to need as well as be needed, experience the freedom of non-autonomy and communal sufficiency.

Conclusion

In concluding, I would like to hint at a couple of the ways the relationality we find normative in a disability perspective has the potential to reconstruct other aspects of theology, namely creation and soteriology. In his book Theology and Down Syndrome, Amos Yong reimagines the doctrine of creation. 

First, he points out that there is no strong explanation of theodicy in scripture. It is clear; however, that sin manifests itself as violence against self, neighbor and nature. “This means we are less concerned with explaining how the primeval sin of ha adam resulted in disabilities than we are in explaining how disabilities are social manifestations of or occasions for human acts of violence and injustice (of discrimination, exclusion, and oppression).” [xxv]  Along these lines, the truth of original sin is we are all caught up in this violence, and we all perpetuate it.  

           A second insight into the creation that a disability perspective encourages is a relational view of the imago Dei. Both a substantive view that relies heavily on human rationality and a functional view that relies on the concept of dominion discriminate against the disabled. 

A relational view of the imago Dei, however, understands our likeness to God in our ability to have a relationship with others, just as the Trinity is relational within itself. We are like God in our dependence upon relationships.   

A third point about the doctrine of creation that Yong notes is an emphasis on variation and difference. As a disability perspective seeks to appreciate human variation, so the immense variation of creation is recognized as essential to God’s purposes. Yong writes, “a theology of the body that emphasizes plurality and difference would see the Holy Spirit (the Ruach of God) ‘not as the power to rescue and repair according to some presupposed ‘original state’ or ideal form, but as the energy for ‘unleashing multiple forms of corporeal flourishing.’” [xxvi] God’s image cannot be grasped through a singular ideal form but requires many lenses. 

A disability perspective can also have profound significance for soteriology. Particularly in evangelical circles, salvation has been understood primarily in vertical terms between the individual and God and has been reduced to a formulaic prayer of confession, repentance and acceptance. In this rational and autonomy-based view of salvation, the eternal destiny of persons with profound developmental disabilities is categorized under innocence, along with infants and perhaps animals. The societal view of disabled people as un-whole is perpetuated, and they are not welcomed into the body of Christ as participating members with spiritual gifts to offer. A disability perspective, however, that prioritizes relationality suggests that persons with mental disabilities can be saved through a relationship with their caregivers. Also, just as significantly, caregivers can be saved through their relationships with those who have mental disabilities. In this horizontal understanding of salvation, those whom societal norms have so often rejected from participation in religious activities are drawn into the salvific work of the body of Christ. Their spiritual gifts are employed and appreciated. I would suggest this vision of salvation, which is dependent upon the vulnerability required for true relationship, is much closer to the biblical witness of salvation coming through Christ’s vulnerability than is the generally accepted views of salvation that rely upon autonomous individuality.  

As a closing thought, if the perfection of God’s love is in vulnerable communion with humanity that takes into God’s self the limitation of incarnation and the disability of the cross, this has enormous implications for how we view who we are. Relationships, rather than autonomy, become the goal, and we can begin to define selfhood in the terms Jennie Block uses: “the extent to which we are known and loved by others and the extent to which we are able to love, is the extent to which we exist.” [xxvii]  The need for love and the possibility for love arises not from places of self-sufficiency and autonomy but from limitation and vulnerability. This is Christ’s body broken for us.  

  [i]    Christopher Newell, “Disabled Theologies and the Journeys of Liberation to Where Our Names Appear.” Feminist Theology 15(3) 2007. p. 324.

[ii] Jackie Leach Scully. “Drawing Lines, Crossing Lines: Ethics and the Challenge of Disabled Embodiment.” Feminist Theology. 11(3), 2003. p. 266.  

[iii] A noted professor and priest, Nouwen spent the end of his life at a L’Arche community outside Toronto. He chronicles his helping of a severely disabled man named Adam Arnett, as well as Adam helping him, in a book entitled Adam: God’s Beloved. Maryknoll: Orbis Books, 1997.  

[iv] Reynolds, Thomas.  Vulnerable Communion: A Theology of Disability and Hospitality. Grand Rapids: Brazos Press, 2008. p. 26.

[v] Ibid, p. 80.

[vi] Ibid, p. 82.

[vii] Ibid, p. 82.  

[viii] Ibid, p. 83.

[ix] Betenbaugh, Helen. “Disability: A Lived Theology.” Theology Today 57.2 (2000): 208.

[x] Ibid, 209.

[xi] Nancy Eisland.  The Disabled God: Toward a Liberatory Theology of Disability. Nashville, Abingdon Press, 1994. p. 111.

[xii] Betenbaugh, p. 208.

[xiii] Reynolds, p. 107.

[xiv] Ibid, p. 129.

[xv] Stanley Hauerwas.  Suffering Presence: Theological Reflections on Medicine, the Mentally Handicapped, and the Church.  Notre Dame: Notre Dame Press, 1986. p. 178.

[xvi] Burton Cooper. “The Disabled God.” Theology Today 49.2, 1992. p. 180.

[xvii] Ibid, p. 176.

[xviii] Eisland, p. 103. Just before this quote, she notes, “The disabled God is God for whom interdependence is not a possibility to be willed from a position of power, but a necessary condition for life.”

[xix] Reynolds, p. 117-118.

[xx] John Swinton, originally published in The Journal of Pastoral Theology (2004), p. 67. The paper can also be found online at http://www.abdn.ac.uk/cshad/TheBodyofChristHasDownSyndrome.htm. He uses Frances Young’s term transvaluation from an unpublished paper presented at a conference for theologians held at ‘La Ferme’ in the community of L’Arche in Trosly-Breuil, France in December of 2002.

[xxi] Ibid, p. 71.

[xxii] Ibid, p. 72.

[xxiii] Ibid, p. 73.

[xxiv] Ibid, p. 75.

[xxv] Amos Yong.  Theology and Down Syndrome: Reimagining Disability in Late Modernity. Waco: Baylor University Press, 2007 p. 165.

[xxvi] Ibid, 181-82.  

[xxvii] Newell, p. 339. Quote taken from Jennie Willis Block, Copious Hosting: A Theology of Access for People with Disabilities. London: Continuum, 2002. p. 260.