Recovering Care in Theologies of Disability
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Tom Reynolds, Ph.D.
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Featured Speaker:
Tom Reynolds, Ph.D.
TheologyAndDisability 
Rev. Elizabeth "Betty" McManus 9:43 am on July 20, 2012 Permalink |
I have so enjoyed playing music with you and I look forward to listening to your CD on my drive back to Milwaukee. I will experience a sense of loss after a week of sharing a musical spirituality with you, Neil, and Brian. Thank you for the gift of belonging. God’s peace.
Bill Gaventa 3:41 pm on July 20, 2012 Permalink |
Thanks to Tom for the rough draft of his presentation, below.
Recovering Care: Thoughts Toward a Practical Theology of Disability
Thomas E. Reynolds
Emmanuel College, Toronto
(THIS IS A VERY ROUGH DRAFT—used to speak from for the Theology and Disability Institute, July 2012, Chicago. It is not very polished and so is not for publishing)
We have gifts that differ according to the grace given to us. —ROMANS 12:6
In journeying with my son, Chris, who is diagnosed with Asperger’s Syndrome, inclusion has been a buzz word. And it is commonly held up as an ideal by and for people with disabilities. However, in my experience, there are ways it can be problematic. I won’t detail those here because I’ve written on this elsewhere, and so instead want to press further. Let me begin with this: A community’s effort to include people with disabilities only succeeds if (1) there is an invitation, (2) there is access, and (3) there is welcome. This sounds trite and simplistic. But how often is this missed? Inclusion depends upon being noticed and invited, upon accessibility and upon welcoming hospitality. What I’d like us to notice today is how half-hearted these can be if not grounded intentionally in caring practices and values. Inclusion and access and hospitality are not one-time achievements, neither the first step nor the last step toward right relations with people with disabilities, but rather are parts of an ongoing—and never completed—process aimed at the full participation of all in sharing life together. They presume first that a community has registered there is need, that it is incomplete and missing something. And this itself presumes attentiveness and openness to people, a responsiveness that doesn’t merely “allow for” participation but actively invites and empowers it in relationships of mutual giving and receiving. Inclusion, invitation, access, and hospitality are features of caring communities. These kinds of communities exhibit a form of togetherness within which people bear witness to one another with caring regard. There is genuine sharing in life together. And more, there is fulsome belonging, a much richer word for me than “inclusion” because we become parts of one another.
To think about care, I want to argue, somewhat counter-intuitively, that the famous aphorism of pre-Socratic philosopher, Empedocles, is accurate—that “like attracts like.” It seems counter-intuitive because a preoccupation with its own ‘likeness’ is precisely what leads a community to exclude others who are ‘different’ in so many cases. The insidious ‘we’ of group identity looms large in matter of disability. We tend to accept and care for those somehow like us, relating most comfortably with those with whom we share something, drawing together around that common flame.
But what if ‘like’ can be reconsidered beyond horizons of sameness, beyond assimilating to become ‘like us’ or mainstreamed to function ‘normally’, or even ‘included’ through benevolent gestures of ‘granting’ space for those ‘weaker’ members, those ‘others’? What if ‘like’ comes not from what we ‘are’—as something defined and given in advance—but from divine love, which rises and refreshes itself in relationships as a grace received, a communion that is not an ‘identity’ of sameness but a web of togetherness and connection created in the sharing of differences as gifts?
In my own journey, I have come to believe it is not possible even to begin imagining what this means without reconsidering the moral postures and practices that make fruitful life together possible. The term care seems appropriate, on many levels and in many registers, to speak of gift giving and receiving. I appreciate the work done by Nel Noddings and Virginia Held, among others, who seek in feminist terms to imagine an “ethics of care”. This has opened me to imagine wider ways of thinking about my relationship with my son, Chris, who is diagnosed with Asperger Syndrome. And in fact it has made me painfully aware of how often care is distorted and malformed, both in my own actions and within the caring communities around me, particularly the Church.
So I wish to ‘recover’ care as an essential way of being human together, and more, as part of what it means to be a vulnerable communion called Church, the Body of Christ. To be a caring community is to be an emblem of God’s love in the world, giving and receiving as a people invested in each other as gifts of God. This is Incarnational: it embodies divine care.
But recovering care first requires clearing a lot of ground. For the word has been used in ways that flatten or even distort a more textured meaning. A good start would be to unpack the negative side first, that is, what its absence means. If someone is “careless” they are not paying attention or not heeding directions. If someone is says “without a care” they may mean “without worry or concern”. Or if someone says “I couldn’t care less” they might mean “it doesn’t matter or is insignificant.” The absence of care is generally seen in terms of being insensitive or acting indifferent, as if one is not invested in something or someone. Looking at it from the negative side helps us a little, but it’s not enough to say what something “is not.”
Even so, let me continue by highlighting a few common meanings of care that we should want to distance ourselves from here. Care, as I mean it here, is not just what “experts” or professionals do (providing a service), nor is it even reducible to what in often thought to happen in the many kinds of care-giving roles we find ourselves in throughout our lives, where we “take care of” another, like infants or elderly parents, or like I do with my son, Chris, by providing for them. Care is not merely administering or managing some form of beneficial assistance to another, a commodifiable activity. Neither is it an “industry”—as a care industry (e.g., customer care). Care is too easily reduced to an interest-driven economy of exchange if we think of it in these ways, as if care is a “doing for”, a technique, a technology, to master in order to produce a desired benefit for someone or some group (in which the care-giver stays in control and is not open or vulnerable to another). A similar dynamic occurs in other less calculative instances, and perhaps even with the best of intentions. Here, care can condescend as benevolent paternalism, a “charity” handed out from a distance, from a non-reflexive and detached privilege that can mask self-preoccupation and unjust power relations. More, care can be shallow when it is pity or it pretends to “know better” for another or strategically seeks to implement an agenda occupied more with serving self or the status quo than the good of another. All of these instances in themselves may not do ill or harm, and in fact may do genuine good; but they do show how care can be distorted, and even malformed. Something is missing when care becomes (1) a “doing for” (a service) and/or (2) a “know how” (a technique or technology—from the Greek, techne). Why? Because reciprocity is denied. In the fullest sense, care is a phronesis, the lived wisdom flowering from interdependent relationships of giving and receiving.
Fundamentally, then, care is something inherent in the way we find ourselves among others. There is care in all kinds of relationships (such among family, friends, colleagues, lovers, etc.); it is defined by range of social domains (in institutions, communities, small group, face-to-face, and for oneself, as well); and it active in various modes (as supervisor, employee, daughter, student, spouse, counselor, pastor, etc.), the natures of which shift and change from context to context, conditioned by social and cultural frames of reference.
Throughout each level and register, however, there exists a basic pattern of care as both a practice and value. As a practice, “care” is an action or gesture oriented toward the well-being of persons. This is usually what we mean by “caring for” others or oneself. There is an expenditure of energy for the benefit of someone or some group, providing something that is considered good by the ones cared for (or by a relevant advocate). This is important, for it implies a relational correlation that depends upon a connection of trust between parties. Issues of justice and equity, then, are intrinsic to care. In fact, care assumes the establishment of a covenantal relation. The act of caring is then never merely one-way. There is an exchange, which can be exploitative and unjust if the creaturely personhood of another is overlooked or mistreated. This is why care also involves value.
Care is not merely a practice; it is also a moral posture and value, indexed by attentiveness and responsiveness to others, issuing in a concern for their good. It is compassionate solidarity. To care is to desire and be personally invested in another within what Martin Buber calls a “dialogical situation”—not that literal ‘dialogue’ is necessity, but that a communication of presence is at play. This involves sharing space in some way—through body gestures, touch, listening, speaking, etc.—so that a connective reciprocity emerges. As both practice and value, care is so much more than a “doing for”. It is, most profoundly, a “being with” that rises in connections of giving and receiving, of mutual vulnerability. Indeed, we only respond with care by first having received the presence of another, having been summoned into attentiveness and concern through a kind of call that enlivens response-ability. We come to “take care”…
I want now to build upon this description and speak of recovering care as a way of being open to difference in form of disability—that is, more readily disposed to engage in relations of mutual welcoming and ongoing accommodation. But we must be “care-full” when we speak about care and engage in caring relations with persons with disabilities. First, non-reciprocal modes of care as charity and/or service should be challenged. Second, we must move beyond inclusion and move toward collaboration and interdependence. Part of this means moving beyond a discourse of what we “owe” each other by right, as a minimalist way of relating to insure justice as sameness—i.e., equality before the law. Equality can lump all together in a way that denies the diversity of disability experience. Thus, finally, it means paying attention to that which is different, bearing witness and receiving its provocation as an invocation to care. It is within connections of care—shaped by the dynamic interdependencies of offering and receiving gifts of presence—that trust and covenantal commitments to an ongoing togetherness are fostered. But such togetherness is not possible without difference.
So rather than focus on what about people with disabilities ‘deserves’ inclusion as a quality of likeness or sameness shared by non-disabled and disabled persons alike—i.e., a fundamental humanity, imago Dei, personhood, etc.—I want to focus on difference as something that interrupts sameness, that provokes and disturbs. At the outset, this may seem an odd choice, and certainly I don’t mean to deny the importance of imago Dei and personhood; but my hope is that taking a different tack bears fruit, in fact, fruit that bears the Spirit (Gal. 5:22).
Indeed, the togetherness of church, as the body of Christ, is a gift of the Spirit that trades upon bearing witness to differences, and in fact holds differences as gifts of grace. But, as in the earliest Christian communities knew, such grace is not an achievement but a discovery, and it comes through the practice of opening thresholds provoked into conversion, into transformation, through an invocation or calling. Invocation into what? My reading of the New Testament is that we are called into a “vulnerable communion,” summoned to be a church not ordered by human achievements of inclusion measured according to standards meted out by normalcy, but as a gift received, an after-effect of welcoming differences in caring relations as God loves the world. Our differences provoke us into recognizing not-sameness, and invoke response. Provocation is an invocation, an invitation into a relational liturgy of mutual care, a koinania fellowship outlining the shape of God’s presence. We only have to look at Jesus’ ministry in the Gospels and Paul’s theology of reconciliation to find ample support for this point.
The grace I’m talking about here is an opening to God discovered when our preoccupation with control stops, when our efforts to manage or manufacture it become stilled. In fact, as many biblical stories of hospitality attest, divine presence and blessing comes as a surprise in welcoming others, loving one’s neighbor, indeed, welcoming the stranger as one’s neighbor. Differences may become “like”—close, as neighbors—in the spirit of open welcome.
In his article on autism, care, and Christian hope, Brian Brock explores Jesus’ parable of the Good Samaritan (Lk 10:29–37) to suggest that Jesus’ interlocutor asks the wrong question by asking “Who is my neighbor?” which is a question of defining other humans and putting them into acceptable categories of “likeness”. Instead, Brock notes that Jesus inverts the inquiry to emphasize a focus on the perceiving and acting agent: “To whom have you been a neighbor?” This insinuates that we ought not expect Christian thinking about care to be oriented to or defined by a theological anthropology, an inquiry that easily tips into the register of defining who qualifies as a neighbor (and who does not). Christian anthropology ought, rather, to engender an emphasis on the character of an agent’s action in the present. He quotes Paul Ramsey to make the point: “Christian love does not mean discovering the essentially human underneath differences; it means detecting the neighbor underneath friendliness or hostility or any other qualities in which the agent takes special interest,” including, we might add, disability—my son, Chris, with autism.
I am convinced that such love of neighbor, as hospitality, does not survive without the moral openness of care. Care attends to difference. Rooted in God’s incarnate attentiveness to humanity in Christ, churches can become transformed into caring communities that receive people with disabilities with love and respect, opened to unanticipated gifts. This is not to say that disability itself is a gift, rather that it is neither a deficit or lack nor did it exhaust all that a person is (as defined by normalcy); disability provokes and unsettles the low-expectations of communities. All people are gifts and have gifts. And communities often overlook this crucial point in people with disabilities because of their negative attention to what is perceived as a bodily flaw or deficit in need of remediation or “special” treatment tantamount to exclusion. If ignoring the giftedness and gifts of all, the community itself suffers from a deficit: carelessness. The community is disabled. Care’s attentiveness is wider than that of normalcy. It has a wide aperture, letting the Spirit in. I have learned this from my life with Chris. The aperture on my attentiveness has been widened. My son’s life calls out to me, “pay attention not to your way, but mine, and be with me.” The life in him confronts me outsides the boundaries of my expectations and ushers me into a relationship that I can’t control on my own terms but which has opened me up to new horizons of understanding, reshaping my perspective.
Genuine care is about risking enough to receive the gift of another’s presence. It comes from attunement to another’s rhythm and cadences—that is to say, it is not about “my way,” but yours. This entails a hermeneutic readjustment, an attentiveness that bears witness to another in the shape of a vulnerable responsiveness. It is from such responsiveness that accommodation to difference moves beyond assimilation and becomes expansive and transformative. I am changed, the community is changed, by adjusting its way of being to another’s way of being. The story of a “we” shifts by attending to and entering the stories of persons with disabilities. Certainly the process requires humility and perhaps patience. Sometimes it involves deep disorientation and struggle, even anguish, as my own life as a parent testifies to. But it also cultivates, perhaps because of these, relationships of friendship and mutuality and care that are life changing and grace-filled. Such relation is a liturgy of love, a ritual welcoming of God amidst us in the lives of one another.
If faith communities are about forming Christian care givers/receivers who reflect God’s compassionate and inclusive attentiveness, we need a radically different set of criteria to think about care than presently exists. We need communities cultivated by more than generous intentions and right beliefs. People of faith need apprenticeship into habits of care formed with people with disabilities and mental illnesses, habits that cultivate mutual partnerships of vulnerability open to the transformative power of God’s grace together. And such grace often surprises and disrupts on the way toward transformation, coming unexpected and in ways that are uncomfortable, dislodging the sway of what we might expect according to the standards of normalcy. Care risks exposure to something that calls “us” into question, undoing what has been taken for granted about “us”, in opening up something more than “we” were before. What would our faith communities look like within the arc of such care? In the end, “we” are all church, the Body of Christ with many gifts, each in fragile earthen vessels making present God’s loving solidarity with the world.
I want to conclude by making several points about how our fragile earthen vessel “make present” God’s loving solidarity. First, it is the creaturely gift of life that takes priority. Life seeks life, and in different ways. The preciousness of another’s humanity is not limited to abilities or disabilities. It radiates its own beauty and intrinsic worth—in smiles, laughter, gestures, and even words, sometimes—as loved by God and as a gift of God. The presence of a human being is a reservoir of abundance exceeding ways we might attribute suffering, inability, or abnormality to it.
So, second, our response (our response-ability) to this preciousness is to honor and respect—creating space for its own ways of flourishing (not based on predetermined ways) and giving (not based on what is pre-calculated as worthy of value…). This means risk, being vulnerable to another’s vulnerable life. Risking relationship to another requires opening to another’s way of being that challenges and changes me, that confronts me with my own inadequacy, and that even causes anguish. But it also allows me to receive the giftedness and gifts of another person.
Receiving others via such attentiveness is, as Letty Russell would say, the practice of hospitality at its best. There is no inside/outside binary, but rather a roundtable gathering into which each guest is invited as hosts to one another, joined in relationships of mutual partnership and giving and receiving rather than dependency relationships of unilateral caring giving. An attentive practice listens and receives, letting-be the speaking voice of another and hearing how she or he perceives. In this way, the margins and the center, the guest and host, each circulates and shifts among the other, distinctions blurred. The listener comes to confront the biases, false assumptions, and unequal power quotients that obscure encountering the difference of another. Furthermore, the listener responds, adjusting to the way of another by entering into their story. And the speaking voice grows into itself and gains dignity by being heard and accommodated. The dynamic shifts, then, as each trades roles and becomes an other for and with the other in an ongoing exchange of mutual welcome. Communities of genuine partnership are built upon this transformational process. And these partnerships also entail a commitment to justice work –confronting enduring systems of power on micro and communal levels, because vulnerability is often not parceled out equally within such “ongoing exchanges of mutual welcome”.
What is spiritual about this kind of attentiveness is that it welcomes others as loved by God, and indeed, as a way of loving God. Love of God and love of neighbor, the stranger, are twin elements wrapped in one dynamic. I’ll go further, and perhaps be more radical: Attentiveness to others in relationships of mutual care is attentiveness to God, a spiritual act. Put differently, conversion to one another is conversion to God. It is a divine liturgy of love.
This all may sound a bit too extravagant and impractical. But let me point out that care in the shape of a spirituality of attentiveness can happen in ordinary and seemingly mundane ways in faith communities. For example, doing a “needs assessment” and community profile can be a way of listening and learning how to be response-able as a community, valuing differences by inviting the telling of stories, and subsequently discerning the needs and gifts of participants. This might mean forming “talking circles” or doing “interviews”. Analyzing resources available in the community and negotiating their allocation can be another way to practice attentiveness. Coordinating action to care for/with people, then, enacts response-ability. And the process cycles back to begin again, again and again, each step enlivening the community’s sense of itself as an ever-wider “us”. Perhaps this necessitates policy changes and redirection of mission. The key in it all, however, is a dynamic reciprocity of giving and receiving among all participants, so that inclusion—as invitation to, access for, and welcome by all—is enacted by all in matrixes of caring relationships. In my vision, this is an astonishing way our churches might actively anticipate the kingdom of God, that future time in which all will join together most fulsomely in God’s loving embrace.
Christopher Phillips 8:22 am on July 23, 2012 Permalink |
I’m not sure how helpful these are now that Tom has shared his notes above, but here are a few thoughts I gathered from Tom’s presentation:
Tom has a son named Chris who is on the autism spectrum (Asperger’s syndrome).
In his journey with Chris, inclusion is a buzzword that often leads to dead ends and frustration.
Inclusion depends on hospitality and welcome, which can be half-hearted. What we need instead are intentional practices of care and remembering each other..
To listen with the ears of God and to be a caring community-
Care is often reduced to ‘exchanges’, it needs to be an action aimed at the well-being of another.
Care is not just feelings, it is both a practice and a moral perspective.
Careful about using the word “deserve” it can be rife with problems.