Critical Reflections on Stanley Hauerwas' Theology of Disability

Disabling Society, Enabling Theology

John Swinton

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136432835
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

"No other mainstream theologian has so consistently and trenchantly taken a stand with and for people with developmental disabilities."—John Swinton Critical Reflections on Stanley Hauerwas' Theology of Disability: Disabling Society, Enabling Theology examines the influential writings of one of the most important contemporary theologians. Over the past thirty years, Time magazine Theologian of the Year (2001) Dr. Stanley Hauerwas has consistently presented a theological position which values the deep theological significance of people with developmental disabilities, as well as their importance to the life and the faithfulness of the church. Ten key Hauerwas essays on disability are brought together in a single volume—essays which reflect and illustrate his thinking on the theology of disability, along with responses to each essay from multidisciplinary authoritative sources including Jean Vanier, Michael Bérubé, John O'Brien and Ray S. Anderson. Dr. Hauerwas has always been a fearless voice in the field of theology. Critical Reflections on Stanley Hauerwas' Theology of Disability: Disabling Society, Enabling Theology presents his work on the true meaning of disability and provides critical multidisciplinary discussions about his challenging ideas and their validity. In his essays, Hauerwas discusses his views on issues such as the social construction of developmental disabilities, the experience of profound developmental disabilities in relation to liberal society, and the community as the "hermeneutic of the gospel." Included is a new essay by Dr. Hauerwas responding to the contributors to the book. Critical Reflections on Stanley Hauerwas' Theology of Disability: Disabling Society, Enabling Theology explores Hauerwas' thoughts on:

• the political nature of disability in liberal society
  
• the creation of a society where there is more love
  
• the dimensions of what is "normal"
  
• the key role of those treated as outsiders in building community
  
• the theological understanding of parenting which places responsibility for the individual child firmly within the Christian community
  
• using the model of the church as a social ethic
  
• developmental disability being equated with suffering
  
• the concept of the person in the theology of disability
  
• the developmentally disabled and the criteria for "humanhood"
  
• the importance of family in the process of caring for people with developmental disabilities

Critical Reflections on Stanley Hauerwas' Theology of Disability: Disabling Society, Enabling Theology is a fascinating exploration of contemporary theological reflection on disability and is essential reading for students and teachers of practical theology, pastoral counselors, clergy, chaplains, and social and health care students.

Chapter 1

Timeful Friends: Living with the Handicapped

Stanley Hauerwas, PhD

[From Sanctify Them in the Truth: Holiness Exemplified. Nashville: Abingdon Press, 1999, pp. 143–156]. (Also published by Continuum International Publishing Group, T & T Clark)]. Reprinted with permission.

SUMMARY. In this paper Hauerwas reflects on the significance of the L'Arche communities as exemplars of the true nature of Christian community. He explores the philosophy and theology of Jean Vanier as a mode of embodied theology. Hauerwas reflects critically on Michael Bérubé's book Life as We Know It, in which he describes his experiences with his son who has Down's syndrome. In drawing together the perspectives of Bérubé and Vanier, Hauerwas explores the nature of disability in liberal society and presents an ethical and moral perspective which calls us to take seriously the significance of meaningful community marked by friendship and ‘timefullness.’ Such a community will enable us to become ‘friends of time,’ a form of friendship which seeks meaningful ways to ‘be with’ and not to ‘do for’ people with developmental disabilities.

KEYWORDS. L'Arche, Vanier, wisdom, friendship, community, ethics

L'Arche is special, in the sense that we are trying to live in community with people who are mentally handicapped. Certainly we want to help them grow and reach the greatest independence possible. But before “doing for them,” we want to “be with them.” The particular suffering of the person who is mentally handicapped, as of all marginal people, is a feeling of being excluded, worthless, and unloved. It is through everyday life in community and the love that must be incarnate in this, that handicapped people can begin to discover that they have a value, that they are loved and so lovable. (Vanier 1979, p. 3)

Individual growth towards love and wisdom is slow. A community's growth is even slower. Members of a community have to be friends of time. They have to learn that many things will resolve themselves if they are given enough time. It can be a great mistake to want, in the name of clarity and truth, to push things too quickly to a resolution. Some people enjoy confrontation and highlighting divisions. This is not always healthy. It is better to be a friend of time. But clearly too, people should not pretend that problems don't exist by refusing to listen to the rumblings of discontent; they must be aware of the tensions. (Vanier 1977, p. 80)

Our focal point of fidelity at L'Arche is to live with handicapped people in the spirit of the Gospel and the Beatitudes. “To live with” is different from “to do for.” It doesn't simply mean eating at the same table and sleeping under the same roof. It means that we create relationships of gratuity, truth and interdependence, that we listen to the handicapped people; that we recognize and marvel at their gifts. The day we become no more than professional workers and educational therapists is the day we stop being L'Arche-although of course “living with” does not exclude this professional aspect. (Vanier 1979, p. 106)

ON THE ETHICS OF WRITING ABOUT THE ETHICS OF THE CARE OF THE MENTALLY HANDICAPPED

Every time I write about the mentally handicapped I make a promise to myself that it will be the last time I write about this subject. Yet here I am breaking my promise once again. I published my first essay on the mentally handicapped over twenty years ago. I have continued to speak and write about the mentally handicapped ever since. Surely, one would think, by now I have said all I have to say. Of course, such an attitude, that is, that I have said what I have to say, is that of an intellectual. People who really care about the mentally handicapped never run out of things to say, since they do not write “about” the mentally handicapped precisely because they do not view the mentally handicapped as just another “subject.” They write for and, in some sense, with the mentally handicapped. To be able to write for and with the mentally handicapped requires that you know people who are mentally handicapped. By “know” I mean you must be with the handicapped in a way they may be able to claim you as a friend. I was once so claimed, but over the last few years I have not enjoyed such a friendship. So, when I now write about the ethics of caring for the mentally handicapped, I fear I am not talking about actual people but more of my memories of the mentally handicapped. When they become an abstraction, moreover, we can begin to think we must provide “reasons” for their existence or, worse, discover meaning in why we care for them.

Jean Vanier, as the passages at the beginning of this essay make clear, feels no need to find meaning in why L'Arche homes exist. I call attention to the tension I feel in yet once again writing about the mentally handicapped, because my difficulty illustrates the challenge facing all who care for them. How do we care for the mentally handicapped without allowing the reasons we are tempted to give for such care to distort what should be our relation to those for whom we care? To make the question even more difficult–“How do we care for the mentally handicapped in such a manner which would forestall our felt need to provide reasons why we should care for the mentally handicapped, thereby rendering their lives unintelligible?” After all, both the existence and care of those of us who are considered “normal” is not thought to require justification. Why is the existence and/or care of the “mentally handicapped” singled out as presenting a special problem?

In truth my difficulty with writing about the mentally handicapped did not begin with my isolation from the handicapped. From the beginning I have always felt a bit duplicitous when I addressed the subject of the mentally handicapped and their care. In fact, I have not ever really written about the mentally handicapped. No matter how much I care for the mentally handicapped, I have been haunted by the presumption that my “interest” in them and my writing about them has been part of an intellectual agenda that makes them useful to me. Once I had been drawn into the world of the mentally handicapped, however, it did not take me long to realize they were the crack I desperately needed to give concreteness to my critique of modernity. No group exposes the pretensions of the humanism that shapes the practices of modernity more thoroughly than the mentally handicapped. Our humanism entails we care for them once they are among us, once we are stuck with them; but the same humanism cannot help but think that, all things considered, it would be better if they did not exist. As modern people we think we are meant to be autonomous beings.

In view of such an overpowering presumption, how do we make sense of those among us whose very existence can be nothing but dependence? We live in cultures for which rationality and consciousness are taken to be the very essence of what makes us human. What are we to make of those who will never, even with the best efforts, be able to read or write? Should they be considered human? Examples of how the mentally handicapped render problematic some of the most cherished conceits of modernity are legion. For example, in his Life as We Know It: A Father, a Family, and an Exceptional Child, Michael Bérubé tells of the birth and care he and his wife have given to their Down's Syndrome son, Jamie (Bérubé 1996). His is a wonderful story of how two college professors found their lives reshaped by their son's disability. I have nothing but admiration for the way they have accepted and cared for their son. The story Bérubé tells of their struggle to keep Jamie alive and to secure appropriate medical care is at once as inspiring as it is humane. Moreover, Professor Bérubé has read his Foucault. He knows that some of the most humane forms of “treatment” may be but forms of control. He even knows that the most humane accounts of justice in modernity, such as those of Rawls and Habermas, cannot help his son.

That such accounts of justice require that we shed our individual idiosyncrasies make the existence of his son irresolvably problematic. As Bérubé puts it,

There isn't a chance in the world that James Lyon Bérubé could come to the table independently of “interests,” independent of cognitive and social idiosyncrasies legible to all, independent of either a genetic makeup or a social apparatus that constructs him as “abnormal.” The society that fosters Jamie's independence must start from an understanding of his dependencies, and any viable conception of justice has to take the concrete bodies and “private,” idiosyncratic interest of individuals like Jamie into account, or it will be of no account at all. (Bérubé 1996, p. 248)

Bérubé may not appreciate the considerable differences between the accounts of justice by Rawls and Habermas but I think he rightly intuits that such differences in the face of the mentally handicapped do not amount to much. Bérubé criticizes Rawls and Habermas for succumbing to “a curious Enlightenment fantasy, the idea that once we boil away all the idiosyncrasies and impurities of the irrational human race, we can come up with some perfectly neutral, rational, disinterested character who can play the language-game of justice as if it were a contest in which he or she had no stake” (Bérubé 1996, p. 247).

Yet Bérubé's criticism of Rawls and Habermas rings hollow in the light of his own narrative. He either cannot or does not choose to make intelligible his admirable commitment to Jamie. For example, with great candor Bérubé tells us that he and his wife are as pro-choice after the birth of Jamie as they were prior to his birth. Indeed, he notes that they intentionally did not use amniocentesis, assuming they would “just love the baby all the more” if the baby was born with Down Syndrome. He confesses such a stance was “blithe and uninformed” and that if they had known that their child's life “would be suffering and misery for all concerned” they might have chosen to have an abortion (Bérubé 1996, p. 47). Bérubé notes, however, that it is extremely difficult to discuss Jamie in this way. Just as it was hard to talk about him as a medicalized being when he was in the ICU, it is still harder to “talk about him in terms of our philosophical beliefs about abortion and prenatal testing. That's partly because these issues are so famously divisive and emotionally charged, but it's also because we can no longer frame any such questions about our child now that he's here” (Bérubé 1996, p. 48).

“Now that he is here” is the nub of the matter. Bérubé does not pretend to be able to do more than represent Jamie “now that he is here.” Indeed, he takes that as his ethical and aesthetic task-to help us to imagine Jamie and to imagine what he might think of our ability to imagine him. Just as the Bérubé's look forward to the day that Jamie will be able to eat at the “big” table, to feed himself tacos, burgers, and pizza, to set the table even if such a setting is somewhat “random,” so Bérubé's job:

is to represent my son, to set his place at our collective table. But I know I am merely trying my best to prepare for the day he sets his own place. For I have no sweeter dream than to imagine-aesthetically and ethically and parentally-that Jamie will someday be his own advocate, his own author, his own best representative.” (Bérubé 1996, p. 264)

How sad. All Bérubé can imagine for Jamie is that he be “his own author.” That Bérubé can imagine no other future is not his fault. His imagination reflects the same limits that formed the conceptions of justice he found so unsatisfactory. What other possibility could there be in a world in which God does not exist? What other politics is available for those like the Bérubé's when the church has been reduced to reinforcing the sentimentalities of contemporary humanism? Bérubé has been gifted with Jamie, but he lacks the practices of a community that would provide the resources for narrating his own and Jamie's life.

That is the “crack” I have exploited in the interest of a theological agenda. In short I have used the “now that he is here” as a resource to illumine Christian speech. As Christians we know 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. That we are creatures, moreover, is but a reminder that we are created for and with one another. We are not just accidentally communal, but we are such by necessity. We were not created to be alone. We cannot help but desire and delight in the reality of the other, even the other born with a difference we call mentally handicapped. Our dependency, our need for one another, means that we will suffer as well as know joy. Our incompleteness at once makes possible the gifts that make life possible as well as the unavoidability of suffering. Such suffering, moreover, may seem pointless (see Hauerwas 1990 for a further development of this point). Yet, at least for Christians, such suffering should not tempt us to think our task is to eliminate those whose suffering seems pointless. Christians are, or at least should be, imbedded in a narrative that makes possible a sharing of lives with one another that enables us to go on in the face of the inexplicable. For Christians the mentally handicapped do not present a peculiar challenge. That the mentally handicapped are constituted by narratives they have not chosen simply reveals the character of our lives. That some people are born with a condition that we have come to label as being mentally handicapped does not indicate a fundamental difference between them and the fact that we must all be born. The question is not whether we can justify the mentally handicapped, but whether we live any longer in a world that can make sense of having children. At the very least, Christians believe that our lives are constituted by the hope we have learned through Christ's cross and resurrection that makes morally intelligible the bringing of children into a world as dark as our own.

I have not made these arguments to try to convince people constituted by the narratives of modernity that they should believe in God. Such an argument could not help but make God a deus ex machina, which not only demeans God, but God's creation as well. Rather, my concern is to help Christians locate those practices that help us understand better why our willingness to welcome the mentally handicapped should not be surprising given the triune nature of the God we worship. In other words, I have used the mentally handicapped as material markers necessary to show that Christian speech can and in fact does make claims about the way things are. Theologically, thinking about the mentally handicapped helps us see, moreover, that claims about the way things are cannot be separated from the way we should live. By subjecting the mentally handicapped to this agenda, one might object, am I not also exemplifying the desperate attempt I have criticized in others to find some “meaning” in the existence and care of the handicapped? I would obviously like to answer with a quick denial, but as I indicated above, the question rightly continues to haunt me. That it does so, I think, is partly because I am not sure how one rightly responds to such a challenge.

What sense are we to make of the care given to the mentally handicapped in a world of limited resources? I think the answer requires the reshaping of the question-a reshaping, I believe, gestured at in the work of people like Jean Vanier. For we will only know why we do what we do by the exemplary lives of those like Vanier who teach us how to live with those we call the mentally handicapped. So I can do no better than to turn our attention to his work.

On “Using” the Mentally Handicapped

Before I turn to Vanier, however, I want to expose a narrative that I suspect may inform and shape questions about the “use” of the mentally handicapped-that is, the kind of problematic that has shaped what I have just said about my own disease with my use of the mentally handicapped. It is, moreover, a narrative that I think is particularly pernicious, not only for the care of the mentally handicapped, but for any human relations, including our relations to animals and nature. This narrative received its most eloquent expression as well as its most adequate defence in the second formulation of Kant's categorical imperative–“Act so that you treat humanity, whether in your own person or in that of another, always as an end and never as a means only” (Kant 1959, p. 47). For many, such an imperative seems to embody our highest ideal. Kant certainly did not think of it as an ideal, but rather thought such an imperative constitutive of any moral act that deserves the description, “moral.” Unfortunately this results in the creation of the realm of “morality” that moderns assume can be distinguished from economics, politics, or, more importantly, manners. Once such a realm exists, some people then think they have to think about the “ethics” of the care of the retarded.

The power of this narrative-that is, that we should treat one another as ends and not means, is revealed for modern people by the very fact that we cannot imagine anyone seriously challenging it as a statement of what we should at least always try to do. One may doubt the existence of God, but it seems everyone agrees with the ideal that we ought never to treat one another simply as a means. The way we often put the matter is that every human being should be treated with dignity. Of course, like most abstractions, it is very hard to know what it means to treat others as ends. That most human relations require we treat one another as means does not seem to call into question the assumption that we ought not so to do. Whatever the difficulty may be in concrete specification of treating another as an end, we continue to think we all would prefer to be treated as an end, not a means This seems particularly to be the case when it comes to the mentally handicapped. We presume that the improvement in the care of the mentally handicapped over this century derives from our commitment to treat them as persons deserving respect-that is, as ends in themselves.

There is, of course, the troubling problem of whether the mentally handicapped possess the characteristics necessary to be counted as persons. If they do not, for example, possess minimal forms of rationality, can they be considered persons deserving of respect? Is the care of such beings then to be considered supererogatory? Such questions may be considered too theoretical to be of interest, but if resources become scarce, questions about the care of the mentally handicapped can begin to have frightening implications.

The language of means and ends often has peculiar power in the treatment the mentally handicapped actually receive. The ethic that often shapes critiques of institutionalization of the handicapped, that creates the demand for their normalization, that requires they receive appropriate medical treatment, is one that assumes they too should be treated as ends not as “means only.” (It is important to note that Kant quite sensibly assumed that it is sometimes permissible to treat people as means. What the imperative excludes is that treatment as a means occludes their status as ends. Of course this but crea...