638244

research-article2016

RAE0010.1177/0034637316638244Review & ExpositorWhitt

Article

In the image of God: Receiving children with special needs

Review and Expositor 2016, Vol. 113(2) 205­–216 © The Author(s) 2016 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0034637316638244 rae.sagepub.com

Jason D. Whitt Baylor University, USA

Abstract The Christian tradition holds that children are welcomed as gifts of God. The birth of a child with special needs, particularly one with profound intellectual disability, often provokes questions for families about what it means to receive such a child as “gift.” Likewise, the lives of these children invite deep theological reflection on how churches portray what it means to be human and to flourish as creatures in God’s image. This article considers the experience of families receiving a child with special needs and the theological questions raised by these lives, and offers some direction for how churches might begin to imagine ways in which the children and their families can be embraced into the life of the church. Keywords anthropology, children with special needs, gift, human flourishing, image of God

“Because even that I exist is Thy gift,” Augustine declares as he reflects on his infancy and realizes the beautiful gratuity of life at the end of book one of Confessions.1 Each child born is a gift from God. Christians of all denominations accept this teaching almost without question. The sentiment is ubiquitous on cards and inspirational knick-knacks proffered to first-time parents. Perhaps no other theological conviction acknowledged with the head can be known by the heart as deeply as this one when parents first hold their newborn child. Yet, when the child born is profoundly intellectually disabled, “gift” may be the very last image parents have of their child. More often than not, they experience the birth of their child with disability as a tragedy rather than a cause for celebration when they confront the reality of unrealized expectations.2 Christian families rarely receive messages from their churches that reshape their imaginations to receive these children as gifts. Both in theological reflection and practice, churches provide little formation for families and their fellow congregants to view these children other than as broken human beings and objects of care.  1. Augustine, Confessions, 2d ed., trans. F. J. Sheed, ed. Michael P. Foley (Indianapolis: Hackett, 2006), 21.   2. The experience of the death of dreams for one’s child with the birth of a child with special needs is well illustrated by Emily Perl Kingsley’s short essay, “Welcome to Holland,” http://www.our-kids.org/ archives/holland.html (accessed January 26, 2016). Corresponding author: Jason D. Whitt, Institute for Faith and Learning, Baylor University, One Bear Place #97270, Waco, TX 76798-7270, USA. Email: [email protected]

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The birth of a child with special needs, particularly with profound intellectual disability, often provokes questions for families about what it means to receive such a child as “gift.” Likewise, the lives of these children invite deep theological reflection on how churches portray what it means to be human and flourish as creatures in God’s image. In this article I will consider the experience of families receiving a child with special needs, highlight the theological questions raised by these lives, and offer some direction for how churches can embrace the children and their families. I will challenge the account of human being grounded in rationality and autonomy, and commend instead an anthropology that takes seriously Augustine’s affirmation that all being is a gift. For this reason, the distinguishing character of each human being is God’s continual offer of God’s self in unique relationship. Throughout the article, persons with intellectual disabilities will be the primary reference point for the discussion of disability in the church. The intent is not to minimize or ignore people with physical disabilities who likewise confront challenges making sense of who they are and their place within the community of faith. Rather, I seek to put the questions the church must confront in the starkest manner. Because people with intellectual disabilities stand at the farthest edges of our imagination of what it is to be human, to be able to affirm their full humanity and possibility for flourishing should provide the clearest articulation of what it means for any person to be human and to live a flourishing human life.

Opening (personal) caveat When offering theological reflections on disability, there is a concern to offer one’s credentials for commentary. Owing to a particular sense of being voiceless for so long, disability rights activists, both outside and inside the church, claim the mantra “Nothing about us without us.”3 Stanley Hauerwas and Hans Reinders have both noted the challenge of writing appropriately in their own theological reflections on the issues surrounding disability.4 Therefore, before proceeding further in this article, I would like to offer my own connection to the challenges facing families of children with disabilities. My reflection on these questions began on June 2, 2009 with the birth of my daughter. Born four weeks early, underweight, and microcephalic, she was immediately transported by air ambulance to a neonatal intensive care unit (NICU) at a hospital in a neighboring city. While sitting with her in the NICU, I first read Augustine’s words in Confessions and began to wonder what it meant for my daughter, with all her challenges, to be gift. She will never walk, talk, or eat on her own. She will remain for the entirety of her (very likely abbreviated) life on a 4- to 6-month level. All the dreams we had for who she would be, what she would do, and the ways she might live her life for the glory of God were shattered. My wife and I deeply grieved the loss of those dreams. Yet, we could not stay at that point. We had to begin making sense of what all this meant for our understanding of who our daughter was, who we were, and what we believed about God.   3. James I. Charlton recalls first hearing the slogan in 1993 in South Africa when two disability rights activists used it at a conference. They indicated that the slogan had come from Eastern European activists. He notes that the slogan “resonates with the philosophy and history of the disability rights movement” in its mission to reclaim a voice for those with disabilities. He quotes approvingly Ed Roberts, a leading figure in the movement: “If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose.” Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkley: University of California, 1998), 3.   4. See Hauerwas’s essay “Timeful Friends: Living with the Handicapped,” in Stanley Hauerwas, Sanctify Them in the Truth: Holiness Exemplified (Nashville: Abingdon, 1998), 143–56. Reinders offers a response to Hauerwas in Hans S. Reinders, “The Virtue of Writing Appropriately,” in God, Truth, and Witness: Engaging Stanley Hauerwas, ed. by L. Gregory Jones, Reinhard Hütter, and C. Rosalee Velloso Ewell (Grand Rapids: Brazos, 2005), 53–70.

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As a theologian, I began to wonder how understanding my daughter’s life as gift must shape what it means to talk about human being, and, more importantly, human flourishing. Any discussion of God’s image in humanity that locates the image in rationality, autonomy, or self-determination inevitably excludes those for whom these capacities are not available. I realized that the ways of understanding humans in the image of God that I had always been taught, and which seemed beyond question, made my daughter’s life, and the lives of those like her, morally questionable. Such an account of human being meant that they could be at best broken humans, faulty in their being. At worst, they must be sub-human. Yet, I suspected that this is not what the Christian tradition intended. Even more, if I believed Augustine that our being was gift, then whatever I understood of human being must recognize that the gift given is good in its givenness. This required a new imagination of what it means to be human and in the image of God. For me, this was not merely an academic question, but went to the very heart of who I believed my daughter and every child like her to be. Most importantly, it was a question relating to what I believed about every human being, able-bodied or disabled.

Receiving the gift In almost every instance, the family initially experiences the birth of a child with intellectual disability as tragedy. Among my purposes in this article is to argue that disability is not a tragedy as such and to challenge accounts of human being that would make it so. Yet, this does not preclude the initial experience of disability as tragedy because people have been socialized to understand disability as tragic. As Hans Reinders notes, “For most people the experience of disability as tragedy is real because it is prior to discovering the grounds on which that experience can be contested.”5 Cultural messages about what it is to be human and what a flourishing human life entails leave little space for imagining the birth of a child with intellectual disability as anything other than tragedy. This is certainly true outside the church and too often within it. Part of this experience derives from grief over the loss of dreams for the child. Expectant parents have within their imaginations all manner of visions of what their child will be and do. They imagine first words, first steps, academic and athletic accomplishments, graduations, weddings, and success in a multitude of venues. The birth of a child with intellectual disability brings all these into question. The life that they imagined for themselves with their child stands now in stark contrast to the reality that confronts them. Particularly with the discovery of disability at birth, even the joy of new life often goes without celebration. As parents grieve the loss of dreams, friends and family unwittingly reinforce the grief through expressions of concern. As a mother of a child with spina bifida recalls: Almost immediately, the phone calls from friends and relatives began. Everyone had questions. How had this happened? What was spina bifida? Why hadn’t I known about it before Matthew was born? No one wanted to know how much he weighed or whom he looked like. No one ever asked if he had my eyes.6

Even well-intentioned concern highlights the idea that the birth of this child is not an occasion for celebration. The divide between expectation and the reality was brought home for the family as a young doctor commented to the mother, “Not exactly a Gerber baby, is he?”   5. Hans S. Reinders, Disability, Providence, and Ethics: Bridging Gaps, Transforming Lives (Waco, TX: Baylor University Press, 2014), 5.   6. Gina D’Annunzio, “No One Asked if He Had My Eyes,” Good Housekeeping, April 29, 2015, http:// www.goodhousekeeping.com/life/parenting/a32295/raising-son-with-spina-bifida (accessed June 3, 2015).

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No doubt the dreams of parents for their children’s good are quite natural, and to grieve the loss of these dreams is very normal. Yet, it is important to ask why the dreams parents have for their children take the particular shape that they do. In wider culture, the devaluation of people with intellectual disability reveals a widespread assumption about what makes human life valuable: intellectual ability, autonomy, and self-assertion. The image of the self-willing, self-determining individual who charts his/her own course independently of others tends to dominate contemporary accounts of what it is to live a flourishing human life. The dependence of childhood is to be left behind as the individual moves to independent adulthood. The return to dependence at the end of life is the fear looming over a culture that seeks perpetual youth and vitality. Noting this cultural image of the flourishing human, anthropologist Pamela Cushing writes of those with intellectual disability, “Their unusual traits have almost always been considered undesirable, leading to a general image of them as devalued or deviant people whose very existence seems to contravene cultural norms and attract social controls.”7 She further notes that this negative attitude is evident in several ways: social exclusion, selective abortion, and the application of reproductive technologies to prevent the birth of new babies with disabilities. Cushing argues that negative attitudes toward those with disabilities and the devaluing of those in society with cognitive impairment result from a failure of imagination. She writes, “As a society, we [can] not seem to imagine [the intellectually disabled] as commensurate with ourselves.”8 That is, the shared cultural imagination of what it is to live well as a person is not able to envision the lives of those with intellectual disability—particularly profound intellectual disability—as being in any way valuable. The dominant imagination holds that such lives must hold unbearable suffering, hopelessness, and nothing of value to offer to society.9 This experience of tragedy at the birth of a child with disability is not foreign to Christian families. They share many of the same dreams for their children and, more importantly, they often share a similar imagination regarding the life of a child with disability. Christian accounts of human being, like their secular counterparts, tend to revolve around rationality and self-determination as definitive for what it means to be human. Yet to this imagination is added an account of the world as a well-ordered creation directed by divine providence. Christian accounts of God’s providential ordering of the world mean that the birth of a child with disability overturns all the acquired notions of what it means for the world to have order. When a child is born with a disability, the immediate question is “why?” or “why us?” These families are confronted not only with the challenges of dreams unfulfilled, but they also must wrestle with a world order that no longer makes sense. They wonder how such a tragedy could be part of God’s providential order.10 The experience of tragedy accompanying the birth of a child with disabilities is a product of all of these realizations: loss of dreams for the child, a sense of dread because the child does not fulfill the image of what is deemed valuable, and a fragmentation of what has seemed a stable view of the divinely ordered world. The strong emotions and probing questions this experience evokes mean that families find it difficult to celebrate the birth of the child. Even more, they realize that their experience of nativity is unlike that of anyone around them. They find themselves isolated from   7. Pamela Cushing, “Disability Attitudes, Cultural Conditions, and the Moral Imagination,” in The Paradox of Disability: Responses to Jean Vanier and L’Arche Communities from Theology and the Sciences, ed. Hans S. Reinders (Grand Rapids: Eerdmans, 2010), 78.   8. Cushing, “Disability Attitudes,” 78.   9. Thomas Reynolds contends that disabled bodies are considered lacking in culturally determined “body capital” that acts to define the person’s value in the larger society. Negative valuations of body capital for those with disabilities continue to reinforce the “cult of normalcy” that devalues disability and sees little good in the lives of those with disabilities. See Thomas E. Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Grand Rapids: Brazos, 2008), 56–63. 10. For an extended discussion of this idea, see chapter 1, “Disability and Divine Providence,” in Reinders, Disability, Providence, and Ethics.

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family, friends, and fellow congregants. It is almost impossible to share what they are experiencing, and as a result they draw in on themselves. Likewise, those who want to offer support have little sense of how to do so. In their isolation, families confront questions for which they have few theological resources to draw upon for answers. They exist in a gap between their lives before, with all their hopes and dreams for their child as well as their imagination about who God is and the way the world functions, and the life after, which stretches before them and seems overwhelming and dreadful. In this between, pastors and churches must find ways to meet families, draw them from their isolation, and help them imagine a different future that, though still challenging, is not dreadful and hopeless. When they can imagine a future for their child and their family in which there is goodness and hope, families will begin to reinterpret the birth no longer as tragedy, but as blessing. The journey from before to after is not easy or inevitable, but many families do make it as they come to understand God and humanity in new ways. Yet in many churches, the limitations of the regnant theology become evident in the gap. Accounts of what it is to be human and flourish in the image of God founded on reason and selfwilling provide little hope for families who have received children with intellectual disability. In the following sections I will reflect theologically on disability in relation to Christian anthropology and then consider ways in which this theology might inform practices of embracing families and people with special needs more fully into the life of the church.

Humans in the image of God For Christians, any notion of human being starts with the biblical account of humans as creatures— that is, humans as created beings. In the Genesis 1 creation narrative, the distinctive mark of humans is the divine declaration to make these particular creatures in the image and likeness of God (v. 26). As such, the imago Dei is central to any understanding of what it means to be human. Yet this recognition is itself a source of debate: what does it mean to be creatures made in the image of God? Scripture does not clearly articulate what the image is, and consequently the Christian tradition has been left to wrestle with which human qualities equate with the divine image. As interpreters wrestle with the idea of the imago Dei, they inevitably do so within the context of their own cultural accounts of what it means to be human. Mark Cortez notes quite rightly that “because the imago stands at the center of many Christian conceptions of the human, it invariably enters into dialogue with and is significantly influenced by these other anthropologies.”11 The implications of this influence are significant. Cortez quotes Edward Curtis: “The interpretation of the image of God has often reflected the Zeitgeist and has followed whatever emphasis happened to be current in psychology, or philosophy, or sociology, or theology.”12 While dialogue with culture and other disciplines is important in making sense of Christian anthropology, the ever present danger is that disordered cultural views of the human person and what makes a person valuable will unduly shape Christian accounts. Predominant in the Christian tradition’s reflection on the imago Dei in humans is the attempt to connect it with the human intellectual faculty. This emphasis coheres with Hellenistic philosophical theories and the ideas of Aristotle in particular. Early Christian theologians adopted an account of the image as connected with the faculty of reason, and this has remained a dominant understanding— especially in the popular consciousness.13 While the finer details may be contested, some account of the human person as the uniquely thinking, reasoning, self-determining being stands predominant. 11. Mark Cortez, Theological Anthropology: A Guide for the Perplexed (New York: T&T Clark, 2010), 15. 12. Cortez, Theological Anthropology, 15. 13. For a discussion of how the image of God is understood in early Christian thought, see David Cairns, The Image of God in Man (New York: Philosophical Library, 1953).

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The emphasis on intellect as the distinguishing human capacity is not meant to suggest a narrow conception that entails only logical reasoning. Rather, the notion of reason seeks to encompass a broader account of human capacities tied to reason that distinguish humans as moral and spiritual beings. Baptist theologian W. T. Conner articulates well the attempt to describe a broadened account of intellect that defines humans. He identifies five clusters of capacities that cohere with the image of God in humans.14 First he names intelligence and self-consciousness. Conner notes that the highest form of intelligence is the power to “know one’s self and to know God.”15 Second, Conner argues for the power of “rational affection.” He distinguishes the higher human power from a similar power of affection in other animals because human rational affection is able to work “deliberately and sacrificially for the good of its object.”16 The third cluster encompasses free will and the power of self-determination. The fourth power is moral sense, or conscience, which is the innate awareness of the need to do good. Finally, Conner describes the spiritual affinity for God. With this cluster of capacities, Conner seeks to capture the range of ways people generally understand what it means to be in the image of God and, as such, what it means to be human. Thus, to live into these capacities is to live well as a human. Exhibiting and fostering the development of these capacities might be considered the end goal, the teleological aspect, of what it is to be human. Biologically, a being is born human, but the actualizing of these capacities is what makes that being flourish as human. Some form of this account of human being seems to dominate in most churches. Yet, such accounts implicitly categorize the existence of many children and adults with intellectual disability as morally questionable. Those with profound intellectual disability are almost wholly devoid of these capacities. They lack the ability to know themselves, determine their lives, or even have a moral sense. Even those who are less profoundly intellectually disabled, to the extent that they are able, will still only partially exhibit these capacities. If these capacities are determinative of human being, then it must be the case that people who cannot fully realize them in their lives are either less human or something other than human. This account opens the door for challenges that such lives are not worth living because they cannot ever flourish in the ways that define humanity. While Christians might wish to affirm the value and worth of every human being, even those with intellectual disability, the theological accounts of human being that predominate in churches undercut this approbation. By fostering a theological imagination of human being grounded in some aspect of reason, rationality, or self-determination, those in the pew are left without resources to challenge views of the lives of the intellectually disabled as anything less than tragedy. At best, they exist simply as objects of paternalistic care upon which able-bodied Christians might practice charity and compassion. The problem arises when we identify the imago Dei with some human capacity or activity. This approach means that individuals who lack the capacity or activity become morally questionable. If humans are distinctive because of some inherent capacity, what must be said about those who lack it? They are deemed either faulty or sub-human. This is the challenge that people with intellectual disabilities present to Christian anthropology. More importantly, it is the lived question of families who have a child with intellectual disability. Answering the question of the nature of human being begins in the gap between life before and life after the birth of the child, the gap in which they must make sense of the new reality that is their world. It is also the question for all Christians as they make sense not only of who those with disabilities are and how they are to be valued, but who all humans are and what it means to live a full human life.

14. W. T Conner, A System of Christian Doctrine (Nashville: Sunday School Board of the Southern Baptist Convention, 1924), 303–305. 15. Conner, System of Christian Doctrine, 303. 16. Conner, System of Christian Doctrine, 303.

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I believe the central failing of this popular Christian anthropology is the attempt to seek the imago Dei in something intrinsic to humans. Rather, the answer to the question of what it is that distinguishes humans, which is to articulate the imago Dei, is not found in anything within humans. It is not a quality or set of traits that when fully realized allow for a fully flourishing human life. When we locate the imago Dei in some distinctly human capacity or ability, the image becomes a particular possession of (some) humans. Those who cannot claim possession of the defined qualities must therefore be deemed either less than human or other than human. To encompass fully all human beings in the diversity of their capacities and abilities (or lack thereof), the imago Dei must be truly gratuitous. If the imago Dei is a quality possessed by humans, it is possible that some may be deemed to have it or not. When the imago Dei is recognized as gift, however, and not only as gift given but as gift always being received from beyond one’s self, an account of human being opens which leaves none as morally questionable. Every human exists always as a recipient of God’s continual gift of being and of image in us. It is not a possession that humans can claim as their own, but the image is forever gratuitous and must constantly be given. Instead of a capacity or ability possessed by humans, the image of God that distinguishes them from all else in creation is God’s giving of God’s self in unique relationship. It is this relationship that God declares is the divine image in humans. Significantly, this relationship is given apart from anything humans are or do, and so what is definitive of humans always remains extrinsic to them. No one because of some inherent quality may be said to be more or less human than another. This idea of extrinsic grounding of human being and worth in narrating a distinctly Christian anthropology is not without precedent. Among those making a similar appeal is Reformed philosopher Nicholas Wolterstorff, who seeks to establish the worth of all human beings based upon God’s affection towards humans in his work Justice: Rights and Wrongs.17 In the theological realm, American Lutheran theologian Robert Jenson offers a clear account of the significance of God’s unique relation to humans. “The traditional teaching of God’s image, whether in Catholic or Protestant modification, is right in seeing the uniqueness of humanity strictly in relation to God; and no other assertion of human uniqueness is likely to be sustainable in the long term,” he writes. “Its difficulties arise from not conceiving humanity’s specific relation to God as itself our uniqueness, but instead seeking a complex of qualities, supposedly possessed by us and not by other creatures, that are claimed to resemble something in God and so to establish the relation.”18 Jenson rejects notions of some identifiable quality possessed by humans that somehow distinguishes them from all other creatures, even if drawn from among the cluster described by Conner above. Jenson argues that no characteristic is as uniquely possessed by humans as might be supposed.19 Rather than seeking some quality or cluster of characteristics inherent to humans, the possession of which is the image of God in them, what uniquely marks humans in the divine image is extrinsic: God’s gifting of God’s self in relationship gratuitously given apart from anything humans have or do.20 This account of human being precludes the possibility that some lives become morally questionable. If what it means to be human, to be in the image of God, and to flourish as a human comes only as gift, then the Christian moral imagination of how to value those with intellectual 17. Nicholas Wolterstorff, Justice: Rights and Wrongs (Princeton: Princeton University Press, 2008). See especially his chapter on “A Theistic Grounding of Human Rights,” 342–61. 18. Robert W. Jenson, Systematic Theology, vol. 2, The Works of God (New York: Oxford UP, 1999), 58. 19. It should be noted that Conner himself, in naming each of the powers that are definitive of human beings, recognized that lower animals might share similar qualities, but he sought to distinguish how in humans they were higher or distinct. 20. For a thorough discussion of God’s friendship as definitive of human being, see Hans S. Reinders, Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics (Grand Rapids: Eerdmans, 2008). See especially his chapter on “A Trinitarian Concept of Divine and Human Being,” 227–75.

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disability—even the profoundly intellectually disabled—is open to recognizing in them goodness, purpose, and belonging within the body of Christ. Parents and congregations who already have this imagination in place are better equipped to confront the questions raised by the birth of a child with disability so that they move from the experience of tragedy to openness to a future that celebrates the child who has his/her own work within God’s kingdom. The aim of this brief discussion on one aspect of the theological issues surrounding disability is to articulate a Christian anthropology that does not necessitate a special category for naming the value and place of those with intellectual disability. Only in this way can we avoid others seeing them as less than human. Accounts of human being rooted in rationality as definitive of human being exclude those who lack intellectual ability, and so, to avoid negative valuations of them, Christians are forced either to accept the diminishment of their being or to posit some special category for them. If an account of human being requires a special accounting for intellectual disability, it implicitly categorizes children and adults with cognitive impairment as somehow differently human. They remain other. An account that recognizes the imago Dei as extrinsic, being given in God’s gratuitous offer of God’s self, means that each person, from the greatest intellect to one described (inaccurately) as “vegetable,” may live a full, flourishing human life to the extent that he/ she is open to God’s offer of God’s self.21 This account also poses a significant challenge to notions of autonomy and independence as determinative of human being. Because that which determines the uniqueness of human being comes extrinsically as God’s gift, dependence is not a state to be overcome in developing to a mature, flourishing human being. Rather, dependence is constitutive of human being throughout life.22 Persons with disabilities that necessitate their lifelong dependence upon others are not outliers in their need; they are instead representative of what it means to be human for all people. Creatures who must acknowledge a fundamental dependence upon God cannot then claim independence in all other aspects of life. Thomas Reynolds names this “vulnerable personhood.”23 Created as dependent creatures that constantly receive their being and fullness from God, humans are likewise creatures who need other humans as well.24 The idea that humans are made for relationship is founded upon a prior recognition that human being and flourishing always begin in a prior reception of God’s friendship. Therefore, to affirm the human need for relationship in order 21. It is beyond the scope of this article, but I would suggest that it is not those with intellectual disability who are less than human, but it is those who by their own sin and pride separate themselves from the divine love who become less than fully human. This seems to be very much in accord with what Augustine describes of his own life prior to his receiving of Christ’s grace. He describes himself as driven by base desires, more animal-like than human. In opening himself to God’s grace in Christ, he is opened again to the possibility of being fully human and living a flourishing human life. Those with profound intellectual disability, who lack the capacity for self-assertion or even a sense of self, cannot assert themselves in place of Christ and thereby cut themselves off from God’s grace. Yet, they have the possibility of a full, flourishing human life as Christ is free to live fully in them. This human life is not different in kind from the life of those who are able-bodied. It is the same human life that receives its being and fullness through God’s unique relation to human beings. Unlike the able-bodied, the men and women with profound intellectual disability live fully the lives given by Christ without the prospect of prideful self-assertion hindering the relationship. For a wonderful description of this notion, see Henri Nouwen, Adam: God’s Beloved (Maryknoll, NY: Orbis, 1997). 22. On this issue, Hauerwas writes, “As Christians we know that we have not been created to ‘be our own authors,’ to be autonomous. We are creatures. Dependency, not autonomy, is one of the ontological characteristics of our lives” (“Timeful Friends,” 147). 23. Thomas E. Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Grand Rapids: Brazos, 2008), 105. 24. Alasdair MacIntyre makes a similar argument in Dependent Rational Animals: Why Human Beings Need the Virtues (Chicago: Open Court, 1999).

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to flourish is to recognize that in any relationship, the human parties always participate as receivers first—beings who remain forever dependent.

Ministering to and ministering with What does this anthropology suggest for churches as they seek to minister to and with families of special needs children? While some of the practices I discuss will relate to ministering to and with these families in particular, I will also consider ministry practices to shape the Christian imagination of what it is to be human, which include all members, disabled and able-bodied alike, as fully incorporated into the body of Christ. That is, the goal is not to determine best practices for including these disabled others into some aspects of the community, but to shape the Christian imagination such that those with disabilities are no longer seen as other. Well-meaning Christians often express poor theology when consoling families who are grieving the birth of a child with disabilities. As families struggle to make sense of the deep chasm between the before—marked by hopes and expectations of a “normal” child—and the after of a life that seems only unbearable, frequently upon their lips is the cry of “why?” Hans Reinders rightly notes that this exclamation is not at this time a demand for theological response. It is a cry of lament.25 For their fellow Christians, the ideal initial response is much like that of Job’s friends: to offer presence (Job 2:13). Job’s friends at first came and sat with Job and were present with him in his grief. As families grieve the loss of the future they imagined, it is important for churches to find ways to be present to them. Grief can be isolating, particularly in a situation that is foreign to so many church members (the birth of a child with disabilities). Meals, phone calls, notes, and visits are all ways of being present. Continuing to include the family in fellowships, having them over for meals, or meeting for coffee are just a few ways of being present and making it possible to share grief. Yet, it must be remembered that Job’s friends at first were silent on the question “why?” Poor theology is far more harmful than faithful, silent presence. A common platitude that families of children with disabilities hear is “God gave you this child because you are special.” Similar is the statement: “I don’t know how you do it. I couldn’t do what you’re doing.” These sentiments, and others like them, are all too familiar to families of children with special needs. Far from being comforting, most families hear these statements as pointed reminders that their child is different from other children. Even well-intentioned praise can be two-sided. These families know they are not extraordinary, and most would prefer simply to be recognized as ordinary. Praise places them on a pedestal that they would rather avoid because they are all too aware of their daily struggles and failures. More problematically, such responses to families reveal a type of supererogation that is dangerous in Christian theology. Brian Brock argues that in the context of special needs, “Supererogation suggests that loving our family members with a disability, particularly when this involves our children, is somehow special—or more sacrificial—than loving other, ‘normal’ people.”26 This sentiment has become commonplace among Christians. Yet, if loving and caring for children with disabilities is viewed as morally exemplary, then the suggestion is that the parents who do so might—without moral sanction—have done otherwise. From this perspective, in loving these 25. Reinders, Disability, Providence, and Ethics, 17. Reflecting on John Swinton’s Raging with Compassion: Pastoral Responses to the Problem of Evil (Grand Rapids: Eerdmans, 2007), Reinders points to an account in the book of the death of a child and Swinton’s recognition that classical treatises on theodicy fail in the face of a parent’s lament: “why Lord?” Reinders points to the “important distinction between the question of theodicy as an intellectual problem and the ‘why’ question as a pastoral problem.” 26. Brian Brock, “Supererogation and the Riskiness of Human Vulnerability,” in The Paradox of Disability: Responses to Jean Vanier and L’Arche Communities from Theology and the Sciences, ed. Hans S. Reinders (Grand Rapids: Eerdmans, 2010), 128.

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children, the parents are doing something over and above what ought to be expected of them. It implicitly accepts an account of children that imagines them as objects to be taken or refused depending on how they are valued. An intellectually disabled child might be rejected in utero for one more acceptable to the parents or society. In the anthropology outlined above, however, every child is a divine gift. Parents of special needs children are no more exemplary in loving their children than are any other parents. When Christians offer these platitudes to special needs parents, they betray a moral imagination that values children with intellectual disability as other and less than “normal” children. More than likely, no one intends to convey this message. Nonetheless, comments like these indicate an imagination shaped by a view of human being emphasizing rationality and autonomous self-determination—an anthropology deficient in understanding human being as extrinsically grounded in God’s gifting. While it is important to avoid suggesting that families of children with disabilities are moral exemplars for loving their children, it is equally necessary to recognize that they face unique issues that other families do not. They confront difficult questions about their child’s future, medical challenges, financial hardship, isolation, and a host of other concerns. For families of special needs children to attend church on a Sunday morning takes the planning and effort normally associated with a military exercise. When they do arrive, they are anxious about how their family will be received, who will be able to care for their child, and whether their child will suffer an outburst/ tantrum/seizure/etc. Churches can help by being aware of these unique challenges and thinking creatively with families about ways in which congregations can offer support to meet their needs.27 One way both to support the family and to shape the congregation’s imagination about the nature of human being is to celebrate the birth of the child with special needs. As noted above, for most families, the birth of a child with a disability is immediately experienced as tragedy. Celebration often is lost in the grief and efforts to manage all manner of questions that arise (medical, financial, theological). By celebrating the birth, the congregation affirms the goodness of the gift and continues to shape the imagination that the child is not faulty or undesirably human. Celebration can (and should) take the form both of liturgical practices—baptism or baby dedication—and familiar acts: meals for the family, balloons, notes, and birthday cards. These acts common to the birth of any child remind both the family and the church congregation of the full humanity and goodness of the child who has been given. The future that seemed dark and hopeless begins to have the possibility of goodness and promise. The birth experienced as tragedy transforms into blessing. Churches should also consider how those with disabilities might be included in the life and work of the church. Their active presence serves as a reminder not to diminish the lives of these children and adults. More importantly, by providing opportunities for participation in the life of the church, congregations affirm that within the body of Christ people whom society dismisses as merely vulnerable and dependent have their own gifts and mission for the good of the kingdom of God.28 Able-bodied Christians tend to view children and adults with intellectual disability merely as objects of care. Many accept that the purpose of people with disabilities within the life of the congregation is passive: they exist to teach able-bodied Christians thankfulness for the blessings they have and as objects upon which to practice Christian charity. By this view, able-bodied Christians are called to serve, love, and care for those with disabilities, and in so doing, to develop 27. For an example of a congregation seeking to meet a family’s needs, see Jason D. Whitt, “A Place for Camille,” The Christian Century 132.2 (January 21, 2015), 24–27. Also, an excellent primer for beginning to think about special needs ministry is Amy Fenton Lee, Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families (Cumming, GA: Orange, 2013). 28. Reinders, Receiving the Gift of Friendship, 314–15. Reinders contends that God’s gift of being necessarily entails a mission. “Being human is never without meaning, because it always means something to God: because there is God, there is purpose.”

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important virtues of the Christian life. While such concern is certainly good, the approach likewise constrains the imagination of who these people are. They become little more than objects to be acted upon, not persons who have been given their own gifts for the good of the whole body of Christ. Even more, the relationship established is one way: the able-bodied Christian acting upon and for the disabled other. By maintaining a relationship oriented only by benevolence for the other, Christians remain at a distanced vantage point of pity and paternalism. Such a relationship serves as an unexamined act of self-affirmation: the able-bodied experiencing a sense of significance in having something to offer that the disabled other needs.29 This self-affirmation masks discomfort with need and weakness, and allows the illusion that the benefactor is not himself/herself dependent and vulnerable. This relation of standing over evidences a failure to embrace an anthropology that accounts all humans as fundamentally dependent, first upon God, and secondarily upon others. By only engaging those with profound disability from the vantage of benefactor, the able-bodied avoid confrontation with their own limitations: that they might have need of the other, especially ones viewed by the world as weak. A well-formed anthropology that affirms the full humanity of all persons requires churches to begin to recognize the giftedness and mission of those with disabilities, even those with profound intellectual disability. An anthropology that recognizes the image of God in all persons, not marred or lessened because of intellectual disability, must likewise affirm that all can be gifted by God’s Spirit for ministry in the church. If all are gifted, then in relationships within the congregation, all have something to offer to everyone else. In every relationship, each person enters as one who is already a recipient of God’s prior gifting. Therefore, each person is already dependent and vulnerable by nature of being human. A person does not stand solely in the position of benefactor. Everyone also needs what others have to offer. Those with disabilities are not simply objects of care upon which able-bodied Christians might learn to practice charity. Rather, they too have a purpose given by God and gifts that the community needs. Yet, these gifts can only be discovered when their bearers are embraced as human beings who share the full humanity that is God’s gift. The discovery of what they have to share takes time, openness, and imagination in congregations to allow those with disabilities to express their gifts. If churches will do so, however, they will find themselves to be more of who God has made them to be because they are embracing all members of the body. Churches fully embrace when they believe that intellectually disabled persons have gifts for the good of the whole community—gifts that the church needs to flourish. I have tried to avoid making this article autobiographical, but I will conclude with an example from my own experience. As I described earlier, my daughter is profoundly intellectually disabled. She will never walk or talk or determine some purpose for her life. To the world, she has no value. Yet, she has spiritual gifts. I would not have realized this without reflecting on the relationships that she has in her life. Her companions at church, those who sit with her during the service, helped us see her gift. She has the gift of joy. Those who spend time with her express that it is impossible to be sad around her. When in her presence, they experience a deep joy. For many of us in our pressure-filled world with lives of stress and frustration, that is a gift that we desperately need. Joy is her gift that she gives freely, though not deliberately. This does not mean that every person with disability has the same gift to offer. It is hers. Within the community of Christ, Christians can only discover another’s gift by entering into relationship with the intention not only of giving, but also of receiving. For this to be the case, followers of Christ must have imaginations shaped in such a way that they recognize that all people are fundamentally dependent and that human uniqueness is found in a relationship that begins with God’s initial gifting. 29. The discussion developed here regarding the grounding of relationships in a prior dependency upon God draws heavily upon Reinders’ account of friendship. See Reinders, Receiving the Gift of Friendship, 315–22.

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Conclusion The challenge for churches is to move those with disabilities, perhaps especially those with intellectual disabilities, from the fringes of congregational life to the center, and so to acknowledge their full humanity as gifted by God. Their lives and unique gifts are given for the good of the whole body. When the church shares culture’s value of persons based on intellect or ability to function autonomously, it betrays an embrace of a distorted anthropology that fails to recognize that human uniqueness and flourishing is not possessed intrinsically, but comes only as gift. For churches to transform the way they value those with disabilities, a renewed Christian anthropology is required that shapes congregants’ imaginations about what it means to be human and who humans are in relation to God and one another. All humans receive their existence as gift and remain throughout life dependent upon God’s continuous sustaining gift. Those with disabilities are not faulty or sub-human because of their dependence and vulnerability. Rather, they share this quality with all humans, able-bodied or disabled. From this transformed imagination, it is possible to begin ministering to families who experience the birth of a child with disabilities as a tragedy so that they might come through their grief to discover the goodness, giftedness, and purpose of the child God has given. Author biography Jason D. Whitt is associate director of the Institute for Faith and Learning and adjunct faculty in the medical humanities program at Baylor University. He is also an ordained Baptist minister, having served churches in Texas and New Mexico.