Disability and Christianity
Disability and Christianity
Disability and Christianity
Statistics and preliminary definitions of disability are offered, and current work on embodiment is criticized for its lack of attention to disability. The chapter also explores whether or not there might be an epistemological privilege of disability, suggesting that reflection on experiences of disability offers multiple vantages that are often lacking and which have the potential to enhance both theory and practice, while simultaneously noting the difficulties that come with appeals to the experience of disability. The chapter also describes the structure and goals of the book.
Introduction
disability and christian theology introduction Chances are very good that you know someone with a disability. Chances are also good that you have experiencedor will experiencesome degree of disability yourself. In the United States, the Census Bureau estimates that approximately 18 percent of the population experience some degree of disability, and 12 percent experience a disability requiring assistance from a person or device.[ 1 ] Two in seven families are directly affected by disability.[ 2 ] Nationwide, 2.7 million people use a wheelchair, 1.8 million are reported as being unable to see, 1 million are reported as being unable to hear, and 14.3 million are reported to have limitations in cognitive functioning or a mental or emotional illness that interferes with their daily activities. Overall, 11 percent of children aged six to fourteen have a disability; 72 percent of people eighty and older have a disability.[ 3 ] The World Health Organization estimates that about 600 million people worldwide live with disabilities of various types.[ 4 ] Because disability is an open minority that any of us might join at any time, and which we are much more likely to join as we age, it has been suggested that it makes little sense to try to distinguish between able and disabled, but rather that any difference is simply between disabled and temporarily able-bodied. It is clear that disability is a common and ever-present experience that is worthy of theoretical and theological reflection. To write about disability is to reconsider our understandings of human embodiment. In recent years, there has been an explosion of writing on the bodyas Robyn Longhurst observes, the academy 4 seems to be in the midst of a body craze.[ 5 ] Important scholarly works on the body are appearing in such diverse fields as philosophy, culture and society, comparative literature, critical geography, history, bioethics, political theory, feminist studies, and countless others.[ 6 ] Not surprisingly, academic interest in the body appears throughout the disciplines of religious studies as well. Within the past ten years, for example, we have seen a profusion of works such as Theology and the Body; Thealogy and Embodiment; Religious Reflections on the Human Body; Begin with the Body; Religion and the Body; Body and Soul; and The Good News of the Body. [ 7 ] While the expanding interest in the human bodyincluding its many variations (sexuality, gender, race, and so on) and its complex material/historical natureis an exciting academic trend, the picture of what is meant by body is still only beginning to come into focus. Unfortunately, even in the midst of this body craze, most scholars who explore human embodied existence seem to assume a healthy body to be the norm.[ 8 ] This has two substantial implications. First, even as we begin to attend seriously to the embodied insights of particularities such as race, gender, ethnicity, sexuality, and other characteristics, we leave an important aspect of embodied existence unexamined if we overlook reflection on the experience of disability. Second, just as scholars have noted that it is extremely problematic to examine only men within our exploration of race, or only whites within our exploration of gender, it is similarly problematic to attend only to the nondisabled within any of these other embodiment discourses. In other words, we are not only lacking a scholarship of ability/disability; we are also erroneous in our scholarship of other particularities when we fail to attend to disability and nondisability. We must pay serious attention to the fluidity and variety
of instantiations of human ability if we are to engage in an authentic project of critical reflection on the substance and significance of bodies. In the chapters that follow, we will not only explore the contributions made by reflection on disability but also witness that these are theologically meaningful and valuable perspectives with relevance beyond the realm of people with disabilities. As with insights that have come from attentive engagement with other marginalized perspectives, theological reflection on disability has the potential to challenge theological injustices, as well as to offer new theological contributions. The Ad/Vantage of Disability It has become an expectation in written works on disability to begin with an identification of where the author falls on the disability continuum, in particular 5 to include a coming out as to whether she claims the label disabled for herself. Just as members of the Deaf community have traditionally introduced themselves to strangers with both their names and the identity of the school they attended, so participants in disability studies are expected to begin their scholarly work by pairing their name with an identification of their disability status. In both cases, this is understood as intimately related to the individuals authority and credibility. According to many, one must be disabled to speak legitimately about disability. At the annual meeting of the American Academy of Religion in 2003, for example, a number of audience members in a session of the Religion and Disability Studies group (including some particularly distinguished scholars) questioned the legitimacy of those who presented papers or asked questions as outsiders (those without sufficient personal experience with disability) or as affiliates (those who are the parent, partner, or child of a person with a disability).[ 9 ] As has been seen in other movements, there is an essentialist strain, a tendency to enact identity politics. A recurring question is: Can someone without disabilities ever understand what it is to be disabled? This leads to another question: How disabled must one be to count as having authority on this issue? Intertwined with these epistemological questions is an intense concern that the discourse of disability studies should be controlled by people with disabilitiesa sometimes legitimate fear of colonialism and misappropriation by others.[ 10 ] Is this an epistemological privilege of disability? Are there knowledges that people with disabilities possess but which are lacking in those who are nondisabled? Or do we all know these things, even though we sometimes forget? This book suggests that the appropriate answer is yes to both of these questions. Yes, reflection on experiences of disability offers a vantage or, more accurately, multiple vantages that are often lacking and that have the potential to enhance both theory and practice. Yes, also, we must not forget that all of usdisabled and nondisabledare embodied creatures. While it is inaccurate and potentially harmful (as will be discussed in chapter 1) to say naively that we are all disabled, it is also important to remember that most of us have had some sort of experience with pain and limitation and impairment, and that most of us will experience disability more fully as we age. This double yes to particularity and universality serves to complicate the question of does the author haveor need to havea disability? To add another layer of complexity to this insider/outsider debate, as Tanya Titchkosky notes, Any experience of disability includes others understandings of it.[ 11 ] Disability identity, as both a label and a form of selfunderstanding, depends a great deal on the interpretations of others. One is disabled insofar as he or she appears disabled. I am disabled, perhaps, when I use my cane. In 6 some ways, such classification follows from the history of disability itselfto be disabled is to be labeled so, typically by a medical practitioner or social service/governmental agency. In this way, disability identity is intricately related to medical, economic, and political issues. Similar relationships can be seen within other identities. For example, as feminist theory has shown, what it is to be a woman has been inextricably linked to
the ways and degree to which one is seen and treated as a woman. To be a person with a disability has much to do with the extent and degree to which one is understood or treated as having a disability. Disability identity also depends on societal understandings of normal, reminiscent of Foucaults studies of madness where the concept of sanity is seen to have no meaning without the realization of its opposite, insanity.[ 12 ] Yet even these external categorizations are not as simple as they might seem. For example, neither the category disabled nor the category nondisabled fits particularly well for me.[ 13 ] I pass, and pass rather well, in both but fit comfortably in neither. I match neither the understandings and expectations of normal nor the common assumptions of disabled that come from external medical or societal sources, and neither category seems to capture or make sense of my own internal and embodied experiences. Interestingly, though, when I refuse to claim explicitly either of these two categories for myself, I often find them to be chosen for me. To illustrate, as a way of introducing a chapter I wrote for a book on disability and theological education, the editor stated that my article drew from my experience as a minister, theologian and person with a disability.[ 14 ] This claim was not based on anything I had said about myself, but rather on the assumption that someone who writes on this topic must have a personal experience with disability. In other locations, such as the academic institution where I work, I am assumed to be a nondisabled person with only a theoretical interest in these issues because I do not show visible signs of disability with consistency. Yet neither of these assumptions matches my own experiences. This ambiguity in perception is part of what has brought me to the limits model that I propose and explore in this book.[ 15 ] The term disability, as it is commonly used, is an absolute category without levels or thresholds. One is either disabled or not. From this perspective, one cannot be a little disabled any more than one can be a little pregnant.[ 16 ] The two prevalent models in disability studies (medical and minority, which will be explained in detail in chapter 1) offer no alternative to this either/or perspective. Yet reflection on the lived experiences of people who identify as disabled, as well as those who do not, shows the reality of disability to be significantly more complex and fluid than the category suggests. Lennard Davis is one of the few within disability 7 studies to speak of the need for an alternative to conventional static notions of disability. For Davis, what we are discussing is the instability of the category of disability as a subset of the instability of identity in a postmodern era.[ 17 ] As part of the challenge that destabilizes unifying theories and problematizes unity and wholeness, disability may be a category that is no longer relevant in a postmodern world. This move to highlight the constructed and somewhat arbitrary nature of the category, however, makes many disability scholars and most disability rights activists quite nervous. Davis relates hearing from a prominent disability scholar that Were not ready to dissolve disability identity. Were just beginning to form it.[ 18 ] It does make sense that there is a strategy behind identity politics, especially during the early stages of an academic or political movement. It is only in recent years that people with disabilities have been able to seize the term disability in an attempt to control its usage. For the purposes of self-identification, academic and political access, and other liberative agendas, an exclusive understanding of disability identity may have strategic value. But even in this quest for justice, we must not let reflection on the complexity of human embodiment fall by the wayside. Beyond making more accurate sense of lived experiences of people with and without disabilities, this challenge to the category of able/disabled may offer us a way to rethink identity dilemmas in other situations as well. There are times when we might look back nostalgically to the age when identity seemed relatively simple, when it was possible to say that one was black or white, male or femalebut issues of identity by race, gender, or sexual orientation, particularly in the United States, have become more complicated than perhaps they used to be. This complexity can also be seen within the issue of disability. As Davis notes: Disability is not a minor issue that relates to a relatively small number of unfortunate people; it is part of a historically constructed discourse, an ideology of thinking about the body under certain historical
circumstances. Disability is not an objecta woman with a canebut a social process that intimately involves everyone who has a body and lives in the world of the senses. Just as the conceptualization of race, class, and gender shapes the lives of those who are not black, poor, or female, so the concept of disability regulates the bodies of those who are normal. In fact, the very concept of normalcy by which most people (by definition) shape their existence is in fact tied inexorably to the concept of disability, or rather, the concept of disability is a function of a concept of normalcy. Normalcy and disability are part of the same system.[ 19 ] 8 As with other categories, the concept of disability is integrally related to structures of power and is dependent on sociopolitical categories constructed by an ableist culture. Thus the object of disability studies is most accurately not the person using the wheelchair but rather the sets of social, historical, economic, and cultural processes that regulate and control the way we think about and through the body. This does not mean that we should do away with handicapped parking spots or repeal the provisions of the Americans with Disabilities Act. Even in a postmodern world, curb cuts and closed-captioning are still important. Deconstructing the category disability does not erase embodied experience such as pain or physical limitation. Yet we must recognize that even these elements of disability are not solely individual experiences but rather are rich with communal and societal input and implication. Awareness of issues of identity hermeneutics calls for a reexamination of the category disability, especially insofar as this category has profound implications for self-identity, communal identity, and theological identity. It is not solely an individual issue. Thus, when confronted with the question of self-identity and authority, Davis responds in this way: My aim is to confound the question and by extension the category that the question begs. And my answer is not, and should not be, clear.[ 20 ] In stating my location for this work, I must offer a similar reply. I am aware that I must check an EEOC box on employment forms that allow me only a yes or no as to my disability status, with no room for an asterisk referencing my reflection on disability and human limits. I know that the editors matter-of-fact introduction to my chapter will precede my job interviews, as will reference letters from faculty who have never broached the topic of why I use a cane on some days and not on others. Approaching the subject of disability, I know that there are some relevant experiences I have had and many, many others that I have not.[ 21 ] Also, like any other writer, I know that what follows is the result of many aspects of my identity, both personal and academic. As a result, I offer my reflections here as a preliminary response to a complex constellation of issues, and simultaneously offer an invitation to the reader to join with me as a partner in conversation to which you bring your own experiences and commitments. This, too, embodies the claim that disability is not just an individual experienceit is, at least in part, socially and theologically constructed, and thus any reflection on disability should similarly be understood as necessarily more than any single individuals perspective. There is, I argue, an ad/vantage that comes from the experience of disability. From my own physical limitations and chronic pain, I know things about the world that others do not seem to know; I have had experiences and have gained perspectives that allow me to challenge the invisibility and obscuration 9 of embodied difference. Yet, given that disability is manifest in so many forms, and given that all people experience embodiment and limits, this vantage is not, nor should it be, the only perspective to shape theological reflection on diverse embodiment. Personal experience of disability allows us to perceive and express perspectives that are often overlooked or forgotten. But, as we have learned from feminist and other liberation processes, these personal experiences need communal conversation and reflection to become anything more than untranslatable individual claims to truth and knowledge. Linguistic and Experiential Dangers An important caveat to highlight at the beginning of this sort of project is that neither talking about disability nor reflecting on experiences of disability is as simpleor as neutralas it might initially seem. As has been
alluded to earlier, most people are fairly comfortable in their commonsense understanding of what is meant by disability. This meaning-making is tied to societal understandings of normalcy. When we talk about disability or label someone disabled, we know what we mean. But as we enter this project, it is important to remember that the use of the word disability is deceptive, especially insofar as it acts to condense what is in fact a complex constellation of definitions and experiences, and inasmuch as any appeal to experience (including the experience of disability) is problematic. As we will see, talking about disability is no easy thing. One danger comes from the deceptive simplicity of the term disabled itself. Chapter 1 demonstrates how this term has been used to characterize a wide variety of experiences (including sensory, mobility, cognitive, and emotional differences), and chapter 2 shows that even this cluster has changed dramatically over time. Disability is, in this sense, a sort of illusion, and one that can be dangerous if used to make visible some instantiations of difference and negate others. We see this most clearly by examining discussions of naming in feminist theology, and particularly in the early use of the label woman.[ 22 ] As bell hooks and others have noted, woman has too often been used to mean only a certain kind of woman: Much feminist theory emerges from privileged women who live at the center, whose perspectives on reality rarely include knowledge and awareness of the lives of women and men who live in the margin.[ 23 ] This lack of wholeness has had specific implications; for example, hooks notes that women in lower class and poor groups, particularly those who are nonwhite, would not have defined womens liberation as women gaining social equality with men.[ 24 ] Feminist theology must continually struggle with the 10 meaning and the usefulness of the term woman. Similarly, disability studies must be attentive that use of the word disabled necessarily includes a wide number of disability experiences as well as a constellation of other identities (including gender, race, class, and so on). Beyond the diversity of disability itself, the appeal to the experience of disability holds within it many of the dangers encountered with other appeals to particular experiences. Sharon Welch suggests that, while appeals to experience have been useful, for example, in giving voice (academic and otherwise) to women of color, we must remember that experience cannot be drawn upon as an innocent or truthful source of knowledge. Welch argues that feminists who appeal to womens experience are making a hermeneuticalnot a metaphysical claim.[ 25 ] She asks that we identify the appeal to experience as an invitation, as the beginning of a conversation, rather than any sort of solid conclusion. For Welch, this is key to what she calls an ethic of criticism, where power arises not in any imagined truth but rather from processes of listening, inventing, and responding to very particular challenges, to very particular lives and opportunities.[ 26 ] Given this discussion, two dangers of the appeal to the experience of disability immediately present themselves as we engage this work. First, we must be attentive that there is no single experience of disability; similarly, there is no single experience of wheelchair use or experience of college students paralyzed in skiing accidents. Experience is a diverse and multivocal category, and it is an unfortunate consequence of written academic work that such multivocality is often lost. Given the choice between particularity (theology and the experience of skiing injuries) and broad categories (theology and disability), I have focused on the latter, with the hope that individual differences not be lost or whitewashed,[ 27 ] but rather used as particular lenses through which to view the overall project. A second danger emerges when we recognize, through Welchs nudging, that there is no innocent knowledge. People with disabilities are just as socially conditioned as anyone else, which thus suggests an argument against an intrinsic epistemological privilege. I agree with bell hooks that there is, in many cases, a special vantage point our marginality gives us, which can be useful as we seek to envision and create a counter-hegemony.[ 28 ] Many people with disabilities have had the opportunity to see life from the underside and have perspectives that have not yet been acknowledged in the greater academic or social structures. There is a contribution to be made, but we must not forget that it is not an uncomplicated one. As Sheila Briggs reminds us, the identities of class, gender, and race (and, I would add, disability) are all mediated by social practices.[ 29 ]
11 This suspicion of an intrinsic epistemological privilege combined with the fluidity of disability leads me to the claim that any theology of disability must include the voices and perspectives both of those who identify as disabled and of those who do not. This is, perhaps, similar to the claim that there can be a place for men in the feminist movement. Sandra Bartky notes three possible rationales for making such a claim: men have been harmed by antifeminist thought; justice demands that no one (including men) be excluded; and practical political concerns call for mens participation. As she writes, Given the antiquity, power, depth, and breadth of patriarchy, I doubt that women alone can overthrow it. We need gender traitors, and lots of them, to effect a thoroughgoing reform of our institutions.[ 30 ] I have described this book as a reflection on disability and theology, but my earlier discussion demands that the participants not be limited to those who take or have been given the name disabled as a descriptor of their own identity or experiences. This project is not simply of the disabled or for the disabled. Reflection on the intersection of disability and theology has implications for us all (we have all been harmed by conceptions of disability), our focus on inclusion demands that we exclude no one, and we clearly need ability traitors as well as disability advocates to help counter ingrained notions of normality. Goals for the Project In the pages that follow, we will explore the theological contributions that come from engagement with disability and human limits, providing an analysis of the current state of such engagement as well as proposals for the future of such work. After exploring possible meanings of disability and then reviewing relationships between disability and the Christian tradition, we will explore these constructive possibilities in three concrete ways: first, by exploring how existing theological models might be expanded to include disability; second, by considering liberation theologies of disability; and third, by imagining new possibilities for a theology that grows uniquely out of reflection on disability. All three approaches complicate our commonsense notions of normal and disabled and present a challenge for us and others working on issues of embodiment and theology to reflect upon and to represent the experiences and perspectives of actual bodies in all their lived and constructed diversity. Critical reflection on the diversity of human embodiment has the potential to keep us groundedembodied as it werein an understanding of what human limits enable and what they make difficult. Such grounding offers a 12 significant contribution to the field of disability studies, which otherwise lacks a perspective from which to incorporate the full diversity of individual situations and reactions to experiences of limits. A similar contribution is offered to the field of theology, especially insofar as it enables us to reflect on theological and anthropological implications of the undeniable diversity of human embodiment and the pervasiveness of human limits. This perspective is essential for theology, both as we contribute our reflections to issues of justice and also as we seek new images and possibilities for theological construction that are compatible with diverse experiences of human embodiment. This chapter adds complexity to descriptions of disability by introducing distinctions between impairment, disability, and handicap. It also describes the diversity of experiences located within the category disabled and observes the ways in which other identity characteristics intersect with disability, as in the case of sexism. A brief overview of disability activism and the academic discipline of disability studies is included. Particular attention is given to description of three models of disability: the medical or functionallimitation model, where attention is focused around what one can or cannot physically or functionally do; the social or minority group model, in which shared experiences of discrimination and oppression are emphasized; and the limits model, which encourages engagement in critical reflection on embodied experience, and offers a way to think about the limits of each person and situation and of what such limits may
enable or make difficult. impairment handicap sexism activism disability studies medical model minority model limits model
1 : Understanding Disability
disability and christian theology understanding disability Before we consider the various ways in which disability might intersect with theological reflection, we must first try to make sense of disability itself. Our first significant challenge comes from a rather benign resistance to this task: to most people, defining disability seems unnecessary. As Rosemarie Garland Thomson notes, disability and able-bodiedness seem to be self-evident physical conditions.[ 1 ] It seems strange to even ask what disability is. We can describe it, draw pictures of it, point out examples of it. We think that we know (or can imagine) what it means to be disabled. It is a category that makes sense to us. Perhaps most tellingly, we often think that we know (usually just by looking) if someone is disabled, and we think that we know if someone is not. Disability seems to be a self-evident category. But is it? What Is Disability? Definitions and Statistics In the current scholarship of disability studies, distinctions are often drawn between terms such as impairment, disability, and handicap. Impairment usually signifies an abnormality or loss of physiological form or function. For example, a damaged optical nerve 14 is classified as an impairment. Disability describes the consequences of the impairment, which may be an inability to perform some task or activity. In this example, the disability might be an inability to see. Handicap, literally meaning to hinder or to place at a disadvantage, denotes the disadvantage that results from an impairment or disability. A person is considered handicapped, for example, when the damaged optical nerve or the inability to see makes one unable to distinguish floor numbers on elevator buttons, thus hindering navigation without additional assistance. While we may most often think of these three terms as inextricably linked (i.e., that a person with a significant impairment is both disabled and handicapped), it is important to note that an impairment does not necessarily result in a disability, and a disability need not be a handicap. Our hypothetical friend with the damaged optical nerve (an impairment) would not be handicapped if the elevator buttons were marked in Braille and would not be disabled (the impairment would have no consequences) in the dark. In the United States today, our use of the term disability often draws on the language of the Americans with Disabilities Act of 1990, which defines disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual.[ 2 ] According to the U.S. Census Bureau, a person is considered to have a disability if he or she has difficulty performing certain functions, or has difficulty performing activities of daily living, or has difficulty with certain social roles.[ 3 ] While these definitions usually exclude temporary illnesses, they encompass a wide variety of physical, cognitive, and psychological impairments. Using such definitions, it is currently estimated that 51.2 million Americans have some level of physical or mental disability (18 percent of the population), and 3.2 million have a severe disability (12 percent of the population).[ 4 ] Even though disability is found in all age-groups, issues of disability should be of particular concern as the population ages due to worldwide changes in fertility and mortality (fewer children are born, and more people reach old age) and as the baby boom generation approaches retirement.[ 5 ] For example, the World Health
Organization projects that by the year 2020, the proportion of population aged sixty and over will reach 23 percent in North America, and the total number of elderly people worldwide will reach more than 1 billion. In addition to other social and economic implications, population aging means that more and more people will be entering the age when the risk of developing certain chronic and debilitating diseases is significantly higher.[ 6 ] Not only, then, do we need to attend to disability today, but we must also consider the growing impact it will have in years to come. 15 Disability beyond the Statistics While they may give us a starting point in terms of understanding the frequency of disability, statistics fail to represent the diversity found within the category disabled. If we pay attention, it does not take us long to see that disability takes many forms and affects human lives in a wide variety of ways, to the point that using the single term disability to lump together people who experience mobility impairment, sensory loss, disfigurement, chronic pain, long-term illness, developmental difference, dyslexia, schizophrenia, depression, and more, is to create a deceptively simple category. Moreover, even within any single particular condition, there is often a great deal of variety. For example, disability (impairment) may be temporary or permanent. It may affect all aspects of an individuals life or may be a fairly minor inconvenience. Impairment may result from accident, illness, or genetics, or the cause may be unknown. Some people have their conditions from birth; others acquire them in youth, adulthood, or old age. Certain impairments are relatively stable, others become progressively worse, and some improve with time or medical intervention. People with disabilities may use very different technologies to adapt to their situations or may pass without any apparent aid. In addition, it is important to recognize that people with disabilities are not all treated the same by the nondisabled, especially since some disabilities are more socially acceptable than others, and individuals may have very dissimilar attitudes toward their own conditions. In these and many other ways, the experience of disability is diverse indeed! Beyond this, it is important to remember that people with disabilities have other characteristics as well. Disability crosses all lines of race, gender, sexual orientation, class, age, and so on. These and other life experiences affect each persons experience of disability. Sometimes the relationship between disability and other identities is direct, as when poverty or malnutrition leads to a disabling condition or prevents a person from receiving medical treatment or adaptive technologies. Conversely, disability can lead to poverty if a person either is physically unable to work or is denied the right to work by barriers of access or attitude. Other times the relationship between identities is less immediate but still important. A young person and an older person might respond to a similar disability in very different ways. A businessperson may have an easier time adapting to mobility impairment than a professional athlete. Issues of race, class, gender, and sexual orientation affect the sorts of barriers and obstacles a person with a disability will face, and people who experience oppression or exclusion as members of one or more of these minority 16 groups may find themselves doubly (or triply) oppressed as a result of their disability. One particular area of concern in contemporary scholarship has been the interaction between sexism and disability.[ 7 ] Until recently, research has paid little attention to women with disabilities; most studies on disability have focused on mens issues and have used male subjects, with results (at least, until recently) assumed to be normative for both men and women. The omission of womens health issues from medical research has recently come to the attention of the general public (e.g., we are only beginning to learn about causes and characteristics of heart disease in women); these gaps in research are particularly significant for women with disabilities. In addition to medical issues, womens narrative experiences of disability have also
received less attention in scholarship than those of men. Some propose that this is because disability is culturally interpreted as more traumatic and life changing for men than for women, especially insofar as disability in men, at least within Western culture, is seen as a lack of ability (a tangible loss, with specific economic implications), whereas disability in women instead is seen as a loss or lack of beauty (and, often, a loss of potential as a wife or mother). Others propose that disability in men has been seen as more significant insofar as disability often is equated with dependency, and traditional stereotypes seem to suggest that it is more acceptable for a woman to be or appear dependent than it is for a man. It is clearly erroneous, however, to assume that disability is less traumatic for women than for men. For example, compared with both nondisabled women and men with disabilities, women with disabilities typically have a lower level of educational achievement, a higher rate of unemployment, and, for those who are employed, a significantly lower annual income. Noting the limited role choices and limited role models available to disabled women, Michelle Fine and Adrienne Asch go so far as to conclude that disability is a more severely handicapping condition for women than for men.[ 8 ] The needs and issues of women with disabilities have largely been ignored by the disabled rights movement; men have held the power in these organizations and have, intentionally or not, determined which issues are to be given priority. As Mary Jo Deegan and Nancy Brooks note, Like many other social change movements, the disability movement has often directed its energies toward primarily male experiences.[ 9 ] Concerns of women with disabilitiesincluding discrimination as a result of gender and disability, violence against women with disabilities, and sexism within their organizationshave been disregarded. While this is beginning to change as women take leadership roles and demand that our concerns be addressed, change is slow. 17 Unfortunately, the feminist movement has been no better than the disability rights movement at attending to or engaging with disabled women. Events and meetings are often not physically accessible, and women with disabilities who are present are frequently encouraged to work on their own issues with their own kind.[ 10 ] As Pat Israel recounts: Years ago when I attended a national womens conference I had to use a dirty, foulsmelling freight elevator to get to the workshops. There was garbage on the floor and walls. I felt degraded and dirty every time I had to use it. I wonder what would have happened if the black women had been told to use the freight elevator because they were black.[ 11 ] While organizations are now more aware of and sensitive to issues of access, necessary adaptations are still often made only after a member requests such services (e.g., meetings are rarely interpreted into sign language as a matter of course, and convention sites still frequently include barriers to mobility). Going beyond issues of access, areas of tension arise between disabled and nondisabled feminists over issues such as abortion, caregiving, and technology. For example, many women with disabilities identify themselves as feminists but reject a pro-choice position on abortion, arguing that abortion is too often used as a form of eugenics against disability; this position is difficult for many nondisabled feminists to understand or accept.[ 12 ] Thus, even when issues of basic accessibility are addressed, other diversities of identity and political commitments are frequently overlooked. This nascent literature on women and disabilities also reminds us of the lack of attention to disability in relation to other identity concerns. For example, little has been written to date on disability and race or on disability and sexual orientation. We must be mindful that disability is not an exclusive category but rather one that intersects all other identity and interest groups. Similarly, we must take care that we not assume one individual or group experience of disability to be typical or representative of all people with disabilities. People with disabilities are as different as people without disabilities. Alan Gartner and Tom Joe perceptively write: It is mistaking the diversity of persons with disabilities to expect or desire that they all will have the same views or values. Some are Yankees fans, others favor the Mets; some are men, others women; some are black, others white; many are poor but some affluent; some politically liberal, others conservative; some see gains
won primarily from individual efforts, others from group action. On many, indeed most, issues, it will be these (and other) factors, not the fact of the persons disability, which will have the most salience.[ 13 ] 18 People with disabilities are individualsindividuals with different attitudes toward their disabilities, individuals with different sociological influences and characteristics, individuals with different political positions, individuals with different tastes and interests. It is important that we remember that there is no one perspective that can be called the disabled persons perspective. It is a challenge to be mindful of this diversity: it is too easy to assume one perspectiveusually our ownto be normative and to create interpretations and doctrine based on experiences that do not represent the full diversity of the people to whom, or for whom, we speak. However, as feminist and liberation theologians so clearly demonstrate, diversity includes a richness that can be an asset, not a liability, to our understandings of ourselves and of God.[ 14 ] The same is true for the diversity of disability. Each perspective is different, but each offers us a piece of the puzzle. Susan Brooks Thistlethwaite and Mary Potter Engel remark that people look alike only when you cannot be bothered to look at them closely.[ 15 ] Beyond the most obvious signs of accommodation (wheelchair, hearing aid), many people choose not to look closely at those with disabilities. By ignoring these differences, we not only miss truly encountering one another but also miss important truths about ourselves and the world. Finally, in addition to seeing disability as a category that holds immense diversity within it, we must note that the category itself is an unstable one, with no neat differentiation between us and them. The most obvious example of this is seen when we consider that disability will likely impact each of us during the course of our lives. Disability has been called an open minority because it is a group that most of us will join at some point in our lives.[ 16 ] Even if one does not live long enough to experience a significant disability, most of us will have some sort of firsthand experience with impairment, whether it be a sprained ankle, the need for eyeglasses, or the normal limitations that come as we age. As Elizabeth Stuart notes, The contrast is not between the able and disabled but between the temporarily able and the disabled.[ 17 ] However, while the recognition of this fluidity can be valuable in expanding our perspectives and breaking down some of the dichotomy between able and disabled, it is also important that we do not appeal to this fluidity to minimize the legitimate justice concerns of people with disabilities. Using a wheelchair for a week can teach an able-bodied person a lot about what it is like to be disabled, but it cannot teach her what it is to be a lifelong wheelchair user; it would be inappropriate to say a person could understand everything about the experience of disability from an isolated experience of impairment. At the same time, the wheelchair user-for-a-week might have a better understanding of mobility impairment than a person who has been deaf from birth and has always been 19 identified as disabled. As we recognize these sorts of interweaving connections and differences, we can begin to realize a significant truth: we may in some important ways be more alike than different, even though we are different in significant ways. Disability and Activism While it is outside the scope of this work to present a complete history of disability and disability studies, a brief overview of this topic may be helpful.[ 18 ] Throughout much of history, people with disabilities have been oppressed and repressed as individuals and as a social group. People with disabilities have been isolated, incarcerated, institutionalized, and controlled. Without entering into any sort of oppression derby over which minority group has been the most oppressed in history, it is important to note that people with disabilities, especially those who experience double or triple oppression based on other categories of gender, race, class, and so on, have experienced some of the worst that history has had to offer. People with disabilities have been
defined as many things: deserving victims of divine punishment, objects of scorn, sideshow freaks, medical case studies, recipients of charity, and poster children. In movies and in literature (and perhaps most clearly in childrens stories), disability has been used as a metaphor both for evil and for childlike innocence, and disabled people have frequently been portrayed as malevolent, comical, or victims of a fate worse than death.[ 19 ] As has been the case for other minority groups, rarely have people with disabilities been viewed first as people. Examples of prejudice and discrimination are too numerous to mention, but a few instances will set the scene. In the nineteenth and early twentieth centuries, many states passed laws forbidding people with particular disabilities to marry, and some disabled people were forcibly sterilized. In 1927, the U.S. Supreme Court heard arguments on the forced sterilization of people with disabilities who were wards of the state.[ 20 ] In an eight-toone decision, the Court allowed the sterilization to proceed, with Chief Justice Oliver Wendell Holmes writing that it is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.[ 21 ] In addition to such attempts at eugenics, people with disabilities have been routinely incarcerated, sometimes for life, in institutions and nursing homes, solely because of their disabilities.[ 22 ] A 1911 Chicago city ordinance (known as the Chicago Ugly Law) went so far as to make it a crime for anyone who was in any way deformed so as to be an unsightly or disgusting object to appear in public.[ 23 ] 20 People with disabilities in the United States have been organizing for more than a century to fight such injustices. As early as the 1850s, local organizations were established to advocate for the interests of deaf people, leading to the formation of the National Association of the Deaf in 1880. During the Great Depression, the League of the Physically Handicapped staged sit-ins at federal offices to protest antidisability discrimination by government programs. The National Federation of the Blind and the American Federation of the Physically Handicapped were organized in the early 1940s, and disabled soldiers returning home after World War II founded the Paralyzed Veterans of America. Around the same time, parents of disabled children began to form self-help groups that later grew into national advocacy organizations. Polio and spinal cord injury survivors asserted their right to study, work, and live in communities, and people with psychiatric disabilities protested custodial institutions. Inspired by the African American civil rights movement and the womens movement, various disability communities began to coalesce in the 1960s, giving rise to the modern disability rights movement. Finally, in the early 1970s, a series of legal cases, first and foremost PARC v. Commonwealth of Pennsylvania, crystallized disability as a civil rights issue.[ 24 ] In the decades since, disability rights advocates have scored numerous significant legal and legislative victories, culminating in passage of the Americans with Disabilities Act of 1990. Alongside these political movements has been the growth of a disability culture that challenges traditional notions and assumptions about disability. Disabled artists, writers, performers, and activists celebrate disability as a facet of human diversity. It is now easy to find television and movies that focus on issues of disability and/or include characters with disabilities.[ 25 ] People with disabilities are also gaining unprecedented access to public life and serving in significant roles in business, government, and education. However, as millions of disabled Americans remain locked in poverty and as barriers of attitude and architecture keep people with disabilities from full participation in society, the disability movement still centers on legal challenges, protests, and activism of all sorts. Disability and the Academy A significant addition to the disability movement as a whole has been the development of the academic discipline of disability studies, giving the opportunity for theoretical reflection, critique, and construction that
not only contributes to the academy but may also act to sustain the movement as it looks beyond legal issues of access and inclusion. The field grew out of the work of disabled scholars and activists in the 1980s and 1990s who found that disability, as a 21 socially constructed phenomenon, was not being critically addressed within traditional academic disciplines. Disability studies emphasizes the articulation and theorization of the political, social, and ideological ways in which disability is understood, treated, and experienced. Current work focuses on a critique of the essential disabled person and an exploration of the various ways in which people are socially constructed by disabling environments. While access remains a primary issue of concern, many of these more recent scholarly productions are concerned with identity construction beyond actual experiences of limitation. For example, Rosemarie Garland Thomson, one of the key figures in disability studies, describes a recent project as an attempt to go beyond assailing stereotypes to interrogate the conventions of representation and unravel the complexities of identity production within social narratives of bodily difference.[ 26 ] Others emphasize the implications of disability representations from the perspective of the disability rights movement,[ 27 ] or how the disabled use, elude, resist, or rewrite the culturally authorized scripts of disability identity.[ 28 ] This crossdisciplinary enterprise of theorizing experiences and constructions of disability draws from a wide variety of fields, including sociology, anthropology, political science, literature and film studies, philosophy, psychology, architecture and design, and the arts. Like any other discipline, disability studies requires a base of knowledge and a familiarity with discursive terms and methodologies. While defining itself as a scholarly academic pursuit, it also sees itself as a logical progression from the disability rights movement and as such is careful not to lose its grounding in praxis. Lennard Davis writes, It is not as if disability studies has simply appeared out of someones head at this historical moment. It would be more appropriate to say that disability studies has been in the making for years, but, like people with disabilities, has only recently recognized itself as a political, discursive entity.[ 29 ] As has been the case with the civil rights movement or the feminist movement, there is understood to be a reciprocal connection between political praxis by people with disabilities and the formation of a discursive category of disability studies. However, like race and gender studies, disability studies is not a monolithic undertaking but rather is the site of internal struggle and debate over its desired identity, methodology, and commitments. One particularly heated topic at present regards what qualifies one as an expert. For example, it is frequently argued that some degree of personal involvement with the experience of disability is necessary. People without disabilities (sometimes playfully or pejoratively referred to as TABstemporarily able-bodied) are often regarded with suspicion as to their motivation or ability to understand the full scope of the field. For example, one author writes that the apparent ease of intuitive 22 knowledge is really another aspect of discrimination against people with disabilities.[ 30 ] While rarely articulated as such, the legitimacy of an epistemic privilege of people with disabilities is becoming a central concern in the field of disability studies. At the same time an argument is made by some that disability studies ought to be limited to those with personal experiences of disability, the work of many other scholars who have investigated various aspects of the body and related issues is also being appropriated by the field of disability studies. Examples of these sources include Sander Gilmans work on disease, David Rothman on asylums, Erving Goffman on stigma, Leslie Fiedler on freaks, Susan Sontag on the metaphors of illness, Mikhail Bakhtin on the grotesque, Michel Foucault on disease and sexuality, Jacques Derrida on blindness, Judith Butler on gender and sexuality, and Susan Bordo on anorexia.[ 31 ] As the field of disability studies evolves, it works backward to incorporate
historical writings on disease, the body, freakishness, and so on, while it simultaneously looks forward to a new generation of writers and scholars interested in feminist, Marxist, postmodern, and cultural studies models for understandings of the relation between the body and power. As those who work with issues of disability in the academy and on the picket lines continue to define and defend their goals and commitments, they, along with those who watch them, still return again and again to our first question: What is disability? We turn now to two very different answers to that question, as seen in the medical and minority models. We will discover that these perspectives are only partially adequate, which will lead us to the limits model as an alternate way to attend to the experience of disability. Models of Disability Medical or Functional-Limitation Model As suggested previously, disability may be best seen less as a precise category (where one either is or is not disabled) and more as a broad descriptive term for a cluster of somewhat related experiences or situations. Two distinct models for this cluster can be identified in the literature of disability studies. First is the medical or functional-limitation model, where attention is focused around what one can or cannot physically or functionally do. This model is closest to the commonsense idea that a disability is what someone has when his or her body or mind does not work properly. The medical model emphasizes body parts that do not function. Labels such as invalid, cripple, spastic, handicapped, and retarded all stem from this model. As we will see later, 23 disability rights advocates note that such terms, originally designating a functional loss, also typically connote a lack of worth. Two interrelated assumptions constitute the medical model. First, this model sees disability as primarily a medical or biological condition (what we defined earlier as impairment). It claims that the disabled persons functional ability deviates from that of the normal human body. As a result, this model accentuates ways that people with disabilities are dis-abled and are dependent on others for help. Conversely, it designates disabled people as heroic when they participate in what otherwise might be considered ordinary activities such as sports or careers. Second, according to the assumptions of the medical model, if one displays any of a number of physical conditions, one is automatically labeled disabled. According to this model, it would be nonsensical to suggest that a person who is unable to walk or hear might not be disabled. Key to the medical model is the presumption that disability is a problem that is experienced by an individual (making it a uniquely Western model)[ 32 ] as a deviation from an assumed state of normality. The development of this model can be seen best in the historical relationship between disability and numerous professional and academic disciplines that concentrate upon the management, repair, and maintenance of physical and cognitive capacity. Medicine, rehabilitation, special education, sociology, psychology, and a number of other subspecialties have all, according to David Mitchell and Sharon Snyder, established their scientific and social credentials (as well as their very professional legitimacy) through the humane study and provision of services to disabled populations that are at the outermost margins of social interest and cultural value.[ 33 ] These authors suggest that such service professions have defined and been defined by the experience of disability. In other words, disability is a construction that anchors one end of the continuum between healthy and ill. Disability (which, in this case, includes illness, age, and other diminishments of ability) is an undesirable condition that helps to define the opposite and desired condition of health. Thus, although these professions and disciplines do not focus entirely on disability, their primary emphasis is restoring function and ability, and they aspire to move individuals toward health and nondisability. From these professions, we are
shown that disability is a lack or deficit that must be restored by medical or surgical means wherever possible. Medical professionals have the duty of correcting or curing the deficit so as to achieve a state of normality for the individual. When such restoration is not possible, social workers and other service professionals have the job of creating that state of normality through help such as personal aids and assistive devices (mainstreaming) or by removing the individual from the normal world altogether (institutionalization). 24 The perspective of the medical model is that the body is a biological machine that functions to a greater or lesser extent. Disability, then, is located solely within the body, with no appeal to societal or environmental factors. It is an individual rather than societal condition. Under this model, barriers of architecture and attitude do not cause disability, but rather disability is simply a defect of the body. Physical, cognitive, and psychological disabilities may have environmental causes (abuse, physical or emotional trauma, malnutrition, etc.), but cures are available through repair: treating bodies through medicine or rehabilitation. According to Christopher Donoghue, the defining characteristic of the medical model is that the state of people with disabilities is generally considered to be undesirable and, for that reason, they are expected to seek professional assistance to bring relief to their situation.[ 34 ] This model rests on notions of deviance, proposing that disability is in conflict with societys morals or values. Erving Goffman and others have successfully demonstrated the ways the abnormal nature of people with disabilities serve as a source of stigma among the nondisabled.[ 35 ] Building from this, Eliot Freidson proposed that the underlying assumption of rehabilitation is that people with disabilities need to be changed (normalized) in order to become accepted by the nondisabled. [ 36 ] The medical model has this principle of normalization at its core, attempting to modify, repair, or relocate individuals with disabilities until they are congruent with societal expectations of normalcy and acceptability. The medical model falls under great suspicion by the disabled community because of this identification of individual impairments or deficiencies as the source of disability. By imposing definitions of disability based on criteria of deviation from an assumed norm, the model creates clear categories of normal and abnormal. Activists note that it is only a short step from saying that you have a problem to believing that you are a problem. As a result, it is argued that the medical model has contributed to the disenfranchisement of people with disabilities from society. In addition, this model creates impediments to alternative understandings of disability. As long as we define disability as being an issue solely of individual impairment, there is no great need to attend to architectural and attitudinal barriers in society, and little or no obligation for a community to change its exclusive practices toward people with disabilities. For example, the medical definition of disability used in the Americans with Disabilities Act protects people with disabilities only to the extent that their rights of access and employment do not cause undue hardship to those from whom they seek relief (employers and businesses, for example). This marks a dramatic difference between disability rights and other civil rights legislation that allows no such exception for discrimination. 25 The medical model pervades our legal, therapeutic, financial, political, and social worldviews to such a degree that we barely see it as an interpretation. This perspective, with its emphasis on normalization, seems so normal to most of us that it is difficult even to think of disability as anything other than a functional loss, which itself creates an impediment as we try to explore alternative perspectives (as will be seen in discussions of theology later in this book). However, when we begin to attend to experiences rather than just to an abstract notion of disability, other options come into focus. Surely impairment, pain, and loss have something to do with many individual and communal experiences of disability. There is, however, something more than just these aspects. Political and social implications, not accounted for by the medical model, are also unavoidable.
Social or Minority Group Model The second model common to reflection on disability is often called the social or minority group model, in which shared experiences of discrimination and oppression are emphasized. Under this model, individuals are considered disabled insofar as they experience prejudice and exclusion. It is from this perspective that Nancy Eiesland can claim that Jesus himself was disabled, in much the same way James Cone has claimed that Jesus was blackit is the experience of oppression that is central.[ 37 ] The minority model begins with the notion that disability is a sociopolitical category. It argues that disability is not so much about what one can or cannot do but rather is about how individuals are treated in their daily lives and by society at large. In other words, to be disabled means to be discriminated against.[ 38 ] Disability under this model is socially constructed and results from society not being organized according to the needs of disabled people. The problem is no longer identified as the physical, cognitive, or psychological characteristics of the individual, but rather is identified as prejudicial, exclusive, and oppressive attitudes and barriersaspects that are related to social or political concerns rather than individual diagnoses. This model highlights the fact that individuals are often more handicapped by the physical and attitudinal barriers in society (e.g., lack of access to employment, education, and health care) than by their own abilities. The recognition of such barriers makes disability into more than just a functional (medical) or theoretical concernit becomes an issue of justice as well. Built in to this model, then, is a sense that addressing the problem of disability means working against unjust social structures and instances of bias and exclusion. Key to the minority group model is the notion of ableism. Like sexism, racism, and other isms, ableism can be described as the set of often contradictory 26 stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society.[ 39 ] Among these stereotypes are the beliefs that people with disabilities are inherently unable to manage their own lives, embittered and malevolent, and morally, intellectually, and spiritually inferior to able-bodied people; or, conversely, that people with disabilities are saintlike, cheerful, asexual, childlike, and unusually heroic. Fred Pelka describes ableism as the belief that people with disabilities are different from normal people, and that their lives are inherently less worthwhile than those of people without disabilities.[ 40 ] Under the minority group model, ableism, rather than any physical impairment, becomes the cause and the problem of disability. In the United States, the development of the minority group model is historically linked to the Independent Living Movement in Berkeley in the late 1960s and early 1970s.[ 41 ] At the end of the 1960s, a group of significantly disabled people attending Berkeley (a central locus of other civil rights movements) was attempting to integrate their individual experiences with what they were learning in the university. From their reflections, these people came to see that disability was not so much a matter of impairment as it was one of discrimination; their personal characteristics were not the problem but rather the discriminations they faced within society itself. As a result, they saw that disability, redefined as social oppression, could be remedied by political activity, lobbying, and direct action. Slogans such as Nothing about Us without Us were developed to highlight the political nature of such resistance, articulating the position that if we have learned one thing from the civil rights movement in the U.S., its the sense that when others speak for you, you [ 42 ] lose. For the first time in the public eye, politically active people with disabilities were proclaiming that they knew what was best for themselves and were presenting a demand for self-determination and a necessary precedent to liberation.[ 43 ] The recognition of disability as a human rights issue also clarified for disabled people the means necessary for gaining those rights. In addition to protests and public actions, this model accentuated the need for protected minority status, including legal support for civil rights and protection against discrimination. Claims were
made that services for disabled people had to be based on the concept of equal opportunity and nondiscrimination rather than on the traditional solutions of segregation and specialization. National and international initiatives were proposed and eventually achieved, including the Americans with Disabilities Act of 1990 and the United Nations declarations of the International Year of Disabled Persons (1981) and the International Day of Disabled People (annually on December 3), all of which focus to some degree on the fundamental human rights of equal opportunity and full participation. 27 Inadequacies of These Models Many in both the disability rights movement and disability studies see the minority model as superseding the medical model. In fact, most definitions of the minority model are set up in contrast to the medical model. However, scholars and activists alike are beginning to realize that the minority model itself is not without flaws. One significant concern is that the minority model ignores the very real bodily experience of impairment. By focusing primarily on ableism and experiences of discrimination, the minority model fails to take into account the physical and emotional reality of impairment. When a nondisabled person suddenly becomes disabled as the result of an accident, for example, coming to terms with a newly acquired impairment can create a whole host of emotional and practical difficulties. By emphasizing the social and political nature of disability, the minority model devalues these individual challenges. When the experience of impairment is deproblematized, there is little room for people with disabilities to have a negative or even ambivalent relationship to their impairment. The minority model suggests that all people with disabilities should accept and even embrace their own disabilities/impairmentsafter all, the impairment is not the (or a) problem. Many people with disabilities, including, for example, those who experience chronic pain, have a much more complex relationship with their disabilities than this model would allow. As Roy McCloughry and Wayne Morris note, In an attempt to address the fact that the medical model is a deficit model, the social model can go so far as to elevate impairment to a place beyond regret.[ 44 ] In the effort to counter the medical model, which focuses primarily on impairment, proponents of the minority model sometimes choose to disregard impairment. In doing so, they disallow a wide variety of lived experiences of disability. One way activists and scholars have tried to negotiate these two models is to heighten the distinction between disability (as socially created) and impairment (as a physical attribute of the body), thus allowing the medical model to speak to impairment while the minority model addresses disability. In this way a paradigm is established for disabled people in which impairment/disability becomes similar to sex/gender and race/ethnicity. This construct does have advantages for the lived experience of disability, allowing for political activism even when one has an ambivalent relationship with ones own impairment. However, the distinction between disability and impairment becomes dangerous insofar as it can be presented as an unconquerable dualism or dichotomyone part of which (disability) tends to be valorized and relevant to the public sphere and the other part (impairment) privatized or silenced. In this way, each model produces and embodies distinctions of value and power.[ 45 ] In addition, as Mairian 28 Corker and Sally French describe, since disability and impairment are discursively related (it is very difficult to talk about disability without referring to impairment), such practice marginalizes the role of discourse in creating and challenging disability oppression.[ 46 ] The presupposition that the boundary between disability and impairment is solid does not allow us to explore adequately the experience of disability, because this experience is in between. This leads Margrit Shildrick to observe that at best, we have leaky bodies and boundaries.[ 47 ] Trying to work with the medical and minority models in a dichotomous fashion ignores the leakiness of our bodies and misses the full richness of the experience of disability.
In addition, focusing too heavily on either of these constructs leads us to forget, as was noted at the beginning of this chapter, that disability is only one of a number of experiences that contribute to the identity of people with disabilities. These other identity experiences are ignored by both models altogether. Susan Peters describes the shortcoming in this way: Until recently, I viewed disability through the lenses of social injustice and societal oppression. I committed myself to a disability rights movement in the United States that demanded unity and strength, derived from collective identities and promoted in the common experiences of oppression. Within the last few years, however, I have felt that something was missingmy sense of self. I began to feel the need to re/define myself as an individual and to validate my personal biography of unique lived experiences in multiple communities only one of which was my disability network of political affiliations. I began a search for self-identity that is more complex and personalized, and more grounded in sense of physical and psychological self-image than in the political identity that had previously consumed my thoughts and activities.[ 48 ] The medical model emphasizes body parts, ignoring the identity of the whole person and dismissing the role of society or culture in the experience of oppression. The social model emphasizes minority group status, stressing the similarity of people with disabilities without making a place for individual differences, and ignoring the sometimes negative bodily experiences of people with disabilities. Even if we try to hold the two together in tension, we see only categories of impairment and oppression. Both models fail to capture fully what it really means to be a person with a disability. An especially important challenge to both the medical and the minority group models comes from the Deaf community.[ 49 ] Many Deaf people do not consider themselves as people with disabilities but rather as members of a linguistic 29 minority. The Deaf argue that their difference is not about function or public perception but is actually a communication differencethey speak in sign language rather than English or other aural languages. As a result, they see their situation as radically different from that of people with disabilities. For example, one author points out that the Deaf are not disabled when they are among others who communicate through sign language, whereas a group of legless people will not transcend their motor impairments when they become part of a legless community.[ 51 ] Similarly, being Deaf is not defined by experiences of discrimination or exclusion, or even by a persons ability to hear. People who are Deaf can have a range of hearing abilities from perfect hearing to profoundly deaf ; conversely, there are people with severe or complete hearing loss who do not identify as Deaf and do not participate in the community of Deaf people. The issue of whether Deaf people are a linguistic minority or are disabled (within the context of either the medical or the minority model) has generated intense debate and discomfort among disability rights activists as well as within Deaf communities.
[ 50 ]
A striking example of the challenge to define deaf/Deaf identity may be seen in the debate over cochlear implants. In the cochlea (a part of the inner ear) of a hearing person, sound waves are translated into nerve signals. Some types of deafness result from sound waves failing to reach the cochlea or from the cochlea failing to make the translation into nerve signals. The cochlear implant (CI) is a piece of technology that helps to compensate for the hearing loss with a bundle of electrodes surgically implanted into the cochlea combined with a body-worn speech processor. Like other medical interventions, this procedure has both benefits and risks. In many cases, the CI provides the recipient with the ability to identify and distinguish a wide variety of sound frequencies, enabling the individual to function with fewer barriers in society at large. From this perspective, the CI is seen to restore what was lost in terms of relationships and experiences as well as auditory function. At the same time, the CI requires extensive auditory therapy, can be painful, and, in most cases, does not restore full hearing but only offers the recipient more cues to help make sense of the Hearing world. Some
members of the Deaf community have vigorously challenged the use of these implants, especially in children who are not yet able to make such a decision for themselves, seeing the CI as contributing to a sort of genocide against Deaf Culture.[ 52 ] The extreme side of this movement also exerts pressure for deaf people to give up hearing aidssort of a Deaf-liberation equivalent to bra-burningand resists any attempt to conform or adapt to the expectations of Hearing culture.[ 53 ] While this debate touches on many issues, it also highlights the inadequacy of both the medical and minority models to address the experience of the Deaf community, who see their disability as 30 neither a medical impairment nor a minority experience (at least not one that has a reason to work politically with other disabled groups), but rather as a unique and legitimate cultural form. Critiques such as these that come from Deaf Culture, along with the awareness of the multiplicity of responses to disability and the multidimensional character of human life, now lead some to question the existing models of disability. For example, Corker and Shakespeare state: We believe that existing theories of disabilityboth radical and mainstreamare no longer adequate. Both the medical model and the social model seek to explain disability universally, and end up creating totalizing, metahistorical narratives that exclude important dimensions of disabled peoples lives and of their knowledge. The global experience of disabled people is too complex to be rendered within one unitary model or set of ideas.[ 54 ] The existing models of disability are both totalizing and limited in scopeneither is adequate to fully capture or explain the lived experience of disability. From our contemporary perspective, we can see that both essentialize (either physical attributes/function or social location/minority status) and privilege one group over another (healthy over disabled or oppressed over oppressor). Moreover, the move from modernism to postmodernism shows us that these essential categories are constructions. In this way, we might suggest that the disabled is not a natural category but rather is one that has been and continues to be constructed and, thus, can be deconstructed. This is a move that disability studies is only beginning to note. As Branson and Miller write: What we are exploring is the discursive construction of a category with shifting referents and shifting significance, a concept that demonstrates par excellence that its meaning lies, in Derridas terms, in diffrance, in the establishment of meaning through the assertion of difference. No finite meaning is ever achieved, but meaning is constantly deferred as people manipulate it for their own strategic ends. The meaning of the disabled is elusive but dramatic, vague in its specificity, and destructive in its application as this label is applied to others and as the disabled are defined by difference, with the boundaries of their identify deferred. It is a label that threatens us all but one that is assumed by the majority of the population to be embodied in others.[ 55 ] These authors are among the first to note that the exploration of the concept of disability is at the core of the construction of normal subjectivity, part of an 31 attempt to define and understand oneself in relation to the embodied other. This observation, that our understanding of disability is in direct relation to any understanding of normal or even of self, makes clear the need to analyze and critique our models and their consequences in thought and action. The Limits Model It is my contention that we must attend to both the medical and minority perspectives but also be willing to go beyond them and be open to new models.[ 56 ] As we have discovered, the term disability, as it is commonly
used in the two existing models, is too often an absolute category without a level or threshold. One is either disabled or not. As noted earlier, from this perspective one cannot be a little disabled any more than one can be a little pregnant.[ 57 ] Yet reflection on the lived experiences of people who identify as disabled, as well as those who do not, shows the category of disability to be a fluid construction. As discussed previously, ambiguity in my own identity is part of what leaves me dissatisfied with both the medical and minority models. Today, as I sit to write this text, I may feel disabledaware of the pain and limitations of my body and of the barriers imposed by the physical environment that surrounds me. Tomorrow, sitting comfortably in a chair discussing this work with a friend, I may feel not-disabled. Though this fluidity may not be the primary experience for all people, either with or without disability, most of us experience some situations where we feel more or less disabled than in other situations. Such fluidity reminds us that disability is not just an either/orit is also a when, where, and how. Lived experiences of disability like these have no home within either the medical or minority models. Attention to fluidity, as well as to the commitment that disability is as much an identity statement as it is a biological or sociopolitical condition, leads me to a consideration of disability as an instantiation and reminder of human limits. The limits model differs from the medical and minority models in that it does not attempt to divide participants into one of two categories (either disabled or not-disabled) but instead offers a new way to think about what disability is. It attempts to engage in critical reflection on embodied experience and offers us a way to think about the limits of each person and situation and of what such limits may enable or make difficult. Where the medical model begins with an evaluation or assessment of limitations, the limits model begins with the notion of limits as a common, indeed quite unsurprising, aspect of being human. Unlike the minority model, the limits model avoids categorization and instead encourages us to acknowledge a web of related experiences, suggesting, for example, that a legally blind person may in some ways be more similar to a 32 person who wears glasses than to a person who uses a wheelchair. The medical and minority models offer valuable perspectives; the limits model offers a companion piece that emphasizes reflection on the experience of embodiment in its various formations, including disabled embodiment. Sallie McFague suggests that the test of a model is in looking at what it allows us to see and what it allows us to say, knowing that every model is partial and is only one square in the quilt. We can see and say that the limits model has potential insofar as it highlights the fact that we all experience limits, that these limits differ, and that these limits are accepted, rejected, accentuated, complicated, degraded, and lived in many different ways. It offers us the ability to think of the presence of limits as a natural and good aspect of being human that at the same time is inherently difficult and challenging. It provides us with a new paradigm to make sense of ability and disability. This perspective of limits does not universalize, relativize, or minimize individual experiences but instead proposes an area of common ground in the midst of the recognition of exceptional incarnated and environmental differences. It gives us a place for some very important conversations to begin. It does not dismiss the insights of the medical or minority models but offers a needed theoretical perspective that helps make greater sense of the experience of disability. Key to the limits model is the recognition that disability is actually more normal than any other state of embodiedness. As such, disability should not be an afterthought to models of embodiment. As Stuart notes, In truth the human body is only ever temporarily-abled and hence reflection on the disabled body should be central to any theorizing on the body.[ 58 ] As a starting point, the limits model notes that good health is never a permanent state, so the exception (disability) is perhaps actually more normal than the norm (ablebodiedness). Beyond this, however, the limits model highlights the ways and degrees to which we all experience limitation as an unavoidable aspect of humanity. Limits are not an unusual experience and might even be considered an intrinsic element of being human. Some limits are more profound than others, and many are not accommodated by our physical and social environment, but I argue that limits are more common than
we typically consider them to be. We must recognize the existence and prevalence of limits and begin with disability or limits as central to our theoretical and theological reflection rather than as exceptions. The limits model proposed in this work attempts to do just that: to start with the human variations of ability as the norm, and to build theory and theology from that starting place. Beyond offering an important complement to medical and minority models in disability studies, the limits model has a number of direct implications for theological reflection. As we will see in the chapters that follow, the limits 33 model highlights the fact that all people are limited to varying degrees, and offers this perspective as a foundation for theological reflection. When understood as part of what it means to be human, limits are no longer something to be overcome in search of perfection or something that is experienced as a punishment for sinfulness. From the limits perspective, sin might now be redefined as an inappropriate attitude toward limits as we both exaggerate and also reject our own limits and the limits of others. Disability might be understood as limits that are not accommodated by the environment.[ 59 ] Rather than minimizing the experiences of disability, this perspective allows us to identify areas where our limits become disabling due to physical or social barriers, relocating sinfulness. It also identifies prejudices we hold about limitsthat is, how we see some limits as natural (we cannot fly) and others as defective (I cannot run)and offers an opportunity for a critical reexamination of such views. Moving away from such prejudices, we might instead explore the relationship between limits and creativity, or wonder what the existence of limits tells us about the nature of humanity. Through this new lens, questions may also be raised about images and understandings of God. Christian theology has not, until now, looked at disability from a perspective anything like that of the limits model. When disability has been considered at all, such attention has been based primarily on medical or minority understandings of disability, raising questions such as: Is the reason for my disability my own sin or that of my parents? How might my congregation work to better include people with disabilities in worship? Under these models, disability has rarely been used as a source for theological reflection. In the chapters that follow, we will continue to attend to all three models as we examine our past inheritance and future potential for disability in the Christian tradition. In addition to discovering a long history of attention to disability and other unusual forms of embodiment, we will see that the medical, minority, and limits models each has value as a square in the quilt we make as we consider future constructive possibilities for disability and Christian theology. This chapter describes some of the ways in which religious communities have often been unhelpful, and even harmful, in relation to people with disabilities. It explores the relationship, and occasional lack of relationship, between disability and Christian theology in history in order to understand better factors contributing to contemporary understandings of disability. This includes examination of ancient authors, the Hebrew Bible, Jesus, Paul, the early church, and the move into modern times. The chapter then explores problematic contemporary religious understandings of disability, including interpretations of disability as punishment for one's own sin or for the sin of one's parents, a test of faith, an opportunity to build character or to inspire others, an occasion for the power of God to be made manifest, a sign that one lacks faith, or a mysterious result of God's will. history theology Bible scripture Jesus Paul punishment test faith interpretation
Religious communities have often been unhelpful, and even harmful, in relation to people with disabilities. Stories such as the following are not unusual: As a person with a life-long disability, growing up in the church exposed me to a wide range of religious responses to disability. These folk theodicies are summed up in the familiar remarks: You are special in Gods eyes. Thats why you were given this disability; Dont worry about your pain and suffering now, in heaven you will be made whole; and Thank God, it isnt worse. I was told that God gave me a disability to develop my character. But at age six or seven, I was convinced that I had enough character to last a lifetime. My family frequented faith healers with me in tow. I was never healed. People asked about my hidden sins, but they must have been so well hidden that they were misplaced even by me. The religious interpretations of disability that I heard were inadequate to my experience.[ 1 ] Of course no single story can capture the diverse, complex, and enigmatic connection between persons with disabilities and the wide variety of religious communities and practices. But, even limiting our scope to Christian communities, it is not hard to find troubling examples: pastors say that only the devil within us prevents each and every one of us from immediately acquiring a perfect body;[ 2 ] 36 churches proclaim that handicapped persons become witnesses for Christ, His healing of bodies a sign of the spiritual healing He brought to all people;[ 3 ] book titles such as Conquering Disability and Gods Power and Our Weakness also emphasize this connection.[ 4 ] Perhaps worse yet, Christian communities frequently ignore people with disabilities altogether. Even today, barriers of architecture or attitude intentionally or unintentionally exclude people with disabilities from worship services. Many church buildings are still not physically accessible, and even when congregations have made their sanctuaries more accessible, it is often the case that pulpit and altar areas still pose significant barriers. This unwillingness to think all the way through accessibility issues may betray implicit assumptions: for example, that there would be no reason for a person in a wheelchair to need access to the lectern. Beyond issues of architecture, pastors and other worship leaders still perpetuate unrealistic images of people with disabilities as either pitiful or inspirational. Language offensive to people with disabilities (blind to the truth, lame excuse) is used uncritically, as are metaphorical connections between disability and sinfulness (I once was blind, but now I see), leading to what Brett Webb-Mitchell calls the betrayal of people with disabilities.[ 5 ] While many people with disabilities have found welcome in the church, many others still wait outside the gates.[ 6 ] Nancy Eiseland writes, The persistent thread within the Christian tradition has been that disability denotes an unusual relationship with God and that the person with disabilities is either divinely blessed or damned.[ 7 ] As she points out, Neither represents the ordinary lives and lived realities of most people with disabilities.[ 8 ] When people with disabilities have been considered at all, they have historically been looked at as symbols of sin (to be avoided), images of saintliness (to be admired), signs of Gods limited power or capriciousness (to be pondered), or personifications of suffering (to be pitied)very rarely are people with disabilities considered first as people. This chapter will explore the relationship, and occasional lack of relationship, between disability and Christian theology in order that we might better understand the roots of our traditions as well as the possibilities through which we might move forward. The Challenges of Historical Review There is no doubt that the body is important in Christianity. As Margaret Miles reminds us, Christianity is the religion of the incarnation.[ 9 ] Far from ignoring the body, Christian authors have written about embodiment from the earliest times. While these writings are both numerous and explicit, with few exceptions 37 the historical texts and traditions on embodiment have not been the subject of scholarly review in the contemporary era.[ 10 ] Unfortunately, this lack of scholarly interest makes it easy for some to jump too quickly to
stereotypically negative assumptions about the historical Christian view of the body. Miles notes that contemporary theologies frequently rest on the assumption that we have received an overwhelmingly negative view of the human body as our inheritance from the Christian past.[ 11 ] Indeed, claims along the lines of Christianity subordinates the body to the soul or Christianity has always preached hatred of the body are not hard to find. While these sound bites may seem to support unambiguous notions of Christianitys negation of the body, such stereotypes are far from accurate. From the outset, it is important to recognize that even what we mean by body may not be what an ancient person, biblical figure, or medieval philosopher had in mind. As Dale Martin notes, When we as modern persons read ancient documents, especially the Bible, and come across words like body and soul, spiritual and physical, we naturally take them to mean about what they mean in modern culture.[ 12 ] However, as Martin and others demonstrate, these are inaccurate assumptions. As an example, Hector Avalos cites difficulties in the study of the Hebrew term usually translated as leprosy, a term that does not have a precise equivalent in modern English or in any modern language because our paradigm and classification of diseases are very different from what they were in biblical times.[ 13 ] In addition to changes in definition and meaning, many of the categories that have shaped modern conceptions of the body (like natural/supernatural, physical/spiritual) did not exist in the ancient world as dichotomies, or functioned quite differently in the past than they do for us today. Even conceptions of the material and biological have varied over place and time, as we continue to see today in discussions of the socially constructed nature of embodiment. As we search for discussions of disability in the Christian past, we must also remember the varied social locations of authors and audiences of the texts we examine. As an example, Amanda Shao Tan reminds us that using the Bible to discover how Jewish society perceived disability presents some difficulties, since it was not intended to be a book on various disabilities nor an anthology of the lives of disabled people.[ 14 ] Quite simply, ancient authors were not concerned with helping us understand their views toward the body, and we must take care to remember this as we read. For example, when we read Augustine talking about the body as a stinking corpse, we would likely assume from our standpoint that this is a statement about bodies. But Augustine may instead have intended this as a way to stress the importance of the soul, or the irrelevance of the body after death. We can note, for example, that many times 38 an author will use body in vastly different ways, sometimes even within the same work, or will express a paradoxical relationship between embracing and overcoming the body. One final note is that the historical record that has survived is only part of the story. For example, Peter Brown observes that his work on marriage and sexuality comes from the upper-class world; information from the poor and the illiterate has been lost to time.[ 15 ] Martha Edwards reminds us that the historical record blurs distinctions and loses particularities, noting that there were differences, surely, between the experiences of a wealthy Athenian man who had cerebral palsy and the lame daughter of a poor island family. Yet even such a huge distinction is lost [from our evidence], to say nothing of subtle differences.[ 16 ] So whenever we search for the historical body, we also need to be aware of things unseen. We cannot simply do a word search for disability, impairment, or health and assume that such an examination will tell us about the place of the body in Christian history. We must look deeper than this. The Importance of Historical Review Clearly, then, reading the body in the history of Christianity is no simple task. Yet we cannot just let the past be past. Historical review is important not only as we seek to understand the past but also as we work to relate it to contemporary challenges and constructions. Delwin Brown defines theology as the creative reconstruction of inherited symbols, the construction of a traditions future from the resources of its past.[ 17 ] Based on this definition, he describes the theologians task as follows:
The theologianas analyst, critic, and artistis a traditions caregiver. Her or his task is to try to discern the varied conceptual possibilities ingredient within a traditions lived realities, to formulate and elaborate these potentialities, to evaluate them in relation both to the practice of the communities that house them, often unknowingly, and the critiques of the critical discourses that surround them, thus to advocate some conceptual possibilities over others, and finally, to serve as he or she can the integration of these reconstructions back into communal feeling, practice, and articulation.[ 18 ] As we work to discern and elaborate the contributions of the past, Brown argues that the theologian is called to be creative. The theologian is an analyst, critic, and artist, and, to some degree, the past becomes the artists (as well as the traditions) raw materials. 39 According to Brown, this means that it is not enough to understand and take seriously a particular past or a variety of pasts. we must also ask how canalized pasts become constitutive in present understanding and how present understanding appropriates its pasts. We must ask what pasts are and what they are for.[ 19 ] Not only must we pay critical attention to the past in and of itself, but we must also explore, question, and propose how the past might serve or challenge contemporary communities and traditions. As we look at historical understandings of the body, we do so not only to gain information about the past; these inherited images and notions still function in church and society today, and thus we must always keep an eye on the contemporary significance, contributions, or dangers of the images that we explore. Sheila Greeve Davaney describes this relationship between past and present not only as one where tradition contributes to and can serve as a critique of current understandings and practices but also as one where tradition itself constitutes us. She writes, Our current context is the product of the vagaries of complex and varied historical processes that have preceded our era and of our own contemporary responses to and transformations of these processes.[ 20 ] We are made by history even as we ourselves make history. Recognizing our historicity our agency as well as locatedness within historical strands of particularitythe task before us is to resist authoritative and essentialist interpretations while still recognizing how the past constitutes the present in concrete and powerful ways.[ 21 ] As Davaney and Brown show us, the past is still active in the present. Within the Christian tradition, the core sacraments act to remind us that the past is always with us and in us. Christians still use biblical quotations and ancient theological statements and draw on Greek and other premodern assumptions to make sense of modern and postmodern life experiences; these elements are an integral part of the living heritage of Christian communities today. As long as churches read scripture passages and philosophers quote Plato, as long as theologians act as caretakers for a tradition or challenge it to examine its own functionality through conversation with and criticism of its own particular history, and especially as long as we understand ourselves to be constituted to some degree by what has come before, it is important that we return, and return again, to the inherited historical body to explore as best we can what was said and thought, meant and dreamt, and most especially embodied in our historical past. Historical Foundations Talking about the body belongs to every discipline. Some of the most exciting new studies on body and embodiment are from sociology, rhetoric, and other 40 areas of the humanities.[ 22 ] A review of the body in the religious past could look primarily at non-Christian sources,[ 23 ] or it might look explicitly at the history of the concept of disability from ancient to modern times.[ 24 ] Examinations of embodiment might begin with Peter Brown and his historical study of sexuality,[ 25 ] or with some of the very interesting work in recent years on the dietary practices of women in historical context.[ 26 ]
Reflection on the body, as has been shown by these authors and others, is open to multiple approaches and perspectives and could be studied productively through a wide variety of lenses. The history of the body could be traced to the beginning of history itself, as some of the earliest known human records relate to concerns over the body or bodies. Artifacts, hieroglyphics, pictographs, and cuneiform writings of Egyptian, Assyrian, and Persian civilizations demonstrate early religious understandings of illness and healing.[ 27 ] Scholars such as Gary Ferngren and Darrel Amundsen have looked at understandings of health and healing in what they term animistic societies;[ 28 ] others such as Henri-Jacques Stiker and Giuseppe Roccatagliata have focused more explicitly on ancient understandings of physical and mental illness.[ 29 ] Examinations of health and healing might also be traced to the flourishing of Hippocrates and Asclepius in the fifth century b.c.e.,[ 30 ] or to any of a number of other healers or physicians. Christian understandings of the body clearly rest on our inheritances from Plato and Aristotle and their notions of the relationship between form and matter. For Plato, knowledge cannot be found in the natural world, since knowledge is unchanging and the natural world is a place of constant change. In the Phaedo, Socrates asks if the role of the body in knowledge is that of hinderer or helper and then responds to his own question by stating that the body is an inaccurate witness, and that thought is best when it has as little to do with the body as possible. Knowledge can only be found in the world of Forms. We see this exemplified in book 7 of the Republic, where, in discussing the practice of astronomy, Plato asserts that it does not matter whether a man stares up at the heavens or has his face flat on the groundhe will not learn anything of importance by studying the natural world in that way. The story of the cave in the Republic offers a similar lesson. Thus, as Plato states in the Phaedo, He attains to the knowledge of them in their highest purity who goes to each of them with the mind alone has got rid, as far as he can, of eyes and ears and the whole body.[ 31 ] The body and its impulses might not be evil, even though they need to be kept under control (see the analogy of the charioteer),[ 32 ] but they will not (and cannot) take us to the world of true Forms. Platos teaching was challenged by Aristotle, who was in some ways less dualistic in his thinking. Aristotle dismissed the division of body and soul as pointless, saying, It is as meaningless as to ask whether the wax and the shape 41 given to it by the stamp are one.[ 33 ] For Aristotle, the abstraction of the formal essence of a thing, its universal characteristic, is based on its inclusion in particular things. For example, familiarity with all kinds of trees with their various shapes, sizes, and colorsallows one to contemplate the idea of the tree, the universal form. While this in some ways avoids Platos dualism of form and nature, Aristotles deductive process also leads to a presumption of normality and rejection of the other. Rather than simply describing the material world, his work defines normal and abnormal against each other, with abnormal as not just different but as less (and undesirable). Thus in Generation of Animals, Aristotle suggests that, with humans as with animals, any physical difference that departs from type (i.e., the able-bodied male) becomes a monstrosity that is not only less than ideal but also less than human. Aristotle states that the first beginning of this deviation is when a female is formed instead of a male, a situation which he also describes as a deformity.[ 34 ] Among the most extreme cases of such deformity are children with birth anomalies. Aristotle states that in these cases a child has reached such a point that in the end it no longer has the appearance of a human being at all, but that of an animal only.[ 35 ] Thus the Judeo-Christian tradition(s) developed in a world that already had abundant assumptions and interpretations of the body. Plato contributed much of what was further developed by Descartes, the separation of form and matter, body and soul. Aristotle offered a more integrative alternative but simultaneously created the idea of the norm accompanied by a hierarchy of value, which then allowed for the classification of certain people as abnormal, deviant, and deformed. While others in ancient times also had much to say about embodimentwhether they, like some Platonists, disavowed the relevance of the body altogether or, like some in Greek medicine, developed holistic interpretations of health and healingit is perhaps Platos division of
mind and body and Aristotles division of normal and abnormal that set up an inescapable groundwork for Christian interpretations of embodiment and difference. The Hebrew Bible and Bodies Reading a previous generation of biblical scholars as well as early writings on embodiment theology, one might easily assume that the ancient world had two distinct and completely different conceptions of the bodythe Hebrew and the Greek. A common generalization is that ancient Judaism had an overwhelmingly positive attitude toward the body. This claim has some basis in evidence: examination of ancient texts show that there was little rigid dualism between body and soul, and human beings seem to have been regarded as unitary. What this picture ignores is the diversity within ancient Judaism, overlooking the 42 many Jews, like Philo of Alexandria, who held very Greek concepts of the body.[ 36 ] Additionally, it is not difficult to find examples in ancient Judaism that problematize embodiment. Even a quick reading of Leviticus will show an overwhelming concern with the body, particularly what goes into and comes out of it. As Jon Berquist notes, The Hebrew Bible obsesses about bodies.[ 37 ] It is superficial to assume that ancient Judaism embraced the body (especially nonnormative bodies) or that it had an unambiguous acceptance of physicality. In his groundbreaking studies of medicine and health care in ancient Israel and early Christianity, Hector Avalos explores notions of body and embodiment in the biblical text.[ 38 ] He argues that, while the Hebrew Bible is a necessary point of departure for discussions concerning the health care system of ancient Israel, it is erroneous to assume that the Hebrew Bible is an accurate depiction of the health care system of Israel in all the instances where biblical texts discuss or provide clues regarding the subject.[ 39 ] He notes that political motivations, literary motifs, and hyperbole, among other features of the Hebrew Bible, may mislead us about actual historic conditions. As was highlighted earlier, these texts were not meant to teach modern readers about ancient notions of embodiment. With this caution in mind, we can see from the biblical texts that ancient Israel had a variety of notions about bodies, and that a considerable number of disabilities, both physical and mental, are mentioned in the Bible. Illness and disability were everyday realities that needed to be made sense of in a religious context. One significant theme found in the Hebrew Bible is that sickness is Gods punishment for disobedience. In Deuteronomy, for example, we see descriptions of disease and sickness as Gods response to wrongdoing by the people.[ 40 ] In Deuteronomy 32:39 the Lord says, I kill and I make alive; I wound and I heal, showing that while disease and injury may be a consequence of sin, they are clearly also within the realm of Gods control. Disease, as a manifestation of Gods wrath against sin, can be seen on both an individual level and a national level. For example, Miriam is smitten with leprosy for questioning Moses special relationship with God.[ 41 ] On a wider scale, when David sins by holding a census contrary to Gods will, the Lord sends a pestilence to Israel, leading to the death of 70,000 people.[ 42 ] Disease can also be sent to the enemies of Gods people, as the stories of the Exodus illustrate. However, disease is much more than just a punishment doled out by God. Throughout the Hebrew Bible we see the promise of health and prosperity for the covenant people if they are faithful to God: If you will diligently hearken to the voice of the Lord your God, and do that which is right in his eyes, and give heed to his commandments and keep all his statutes, I will put none of the diseases upon you which I put upon the Egyptians; for I am the Lord, your 43 healer. As Berquist notes, Israels understanding of the body paralleled its understanding of social reality.[ 44 ] The Israelite idea of health was complicated by its interactions with notions of purity and impurity. Avalos notes that there were some skin conditions, for example, that might not pose much of a
[ 43 ]
physical danger to patients or render them physically unfit for most tasks, yet Israelite ideology would view them as sick because there was a visible abnormality, which, even if not regarded as physically dangerous by a modern Western physician, was dangerous in other ways.[ 45 ] Impurity, while overlapping with conditions regarded as illness, was viewed as that aspect of a person that rendered the individual fit or unfit to participate in the community. Avalos notes that such impurity need not be physically visible, and that it sometimes continued to exist even after visible signs of illness disappeared. The writings in Leviticus generally describe chronic illness as an impurity. In Leviticus 21:1623 and elsewhere, the sick have restrictions placed on their ability to participate in sacred events and are not considered equal members of the community.[ 46 ] The Lord spoke to Moses, saying: Speak to Aaron and say: No one of your offspring throughout their generation who has a blemish may approach to offer the food of his God. For no one who has a blemish shall draw near, one who is blind or lame, or one who has a mutilated face or a limb too long, or one who has a broken foot or a broken hand, or a hunchback, or a dwarf, or a man with a blemish in his eyes or an itching disease or scabs or crushed testicles. No descendent of Aaron the priest who has a blemish shall come near to offer the Lords offerings by fire; since he has a blemish, he shall not come near to offer the food of his God. He may eat the food of his God, of the most holy as well as of the holy. But he shall not come near the curtain or approach the altar, because he has a blemish, that he may not profane my sanctuaries; for I am the Lord; I sanctify them. Legal uncleanness was attached to the disabled, who could participate in cultic observances (he may eat the food of his God) but could not serve as priests who made sacrifices. The sanctuary could not be profaned. One had to be without defect in order to approach Gods place of residence.[ 47 ] It is interesting to note, as with Aristotle, that the sick or disabled held a status similar to that of women, whom menstruation made unclean. As Stiker notes, It is important to underline that in this fashion disabilityof all sortsis situated. It participates in the social division: in the opposition between sacred and profane, it is on the side of the profane. But disability is by no means alone there.[ 48 ] All of this reminds us that illness and health as described in the Hebrew Bible ought 44 to be viewed in light of moral, spiritual, and cultic dimensions rather than a matter strictly physical in nature. We also have learned, from feminist biblical scholars and others, that the Hebrew Bibles portrayal of physicality is not unproblematic.[ 49 ] When we look at the contemporary inheritance of these texts, we see that interpretations of the story of Adam and Eve continue to be used as a rationale for limits on the rights of women, and purity guidelines in Leviticus are used as part of the challenge against same-sex unions. It is important to pay attention to critical biblical scholarship as we ask what these ancient texts have to say about disabled bodies, recognizing that the overall message cannot be easily stereotyped as either completely negative or overwhelmingly positive. We have quite a complicated inheritance from these texts, one that must be considered carefully as we bring these stories with us into the contemporary era. And the Word Became Flesh While the concerns of the Hebrew Scriptures in relation to bodies, illness, and disability are not abandoned when it comes to the New Testament, the narratives of the Jesus story present a new facet to the relationship between religion and embodiment. As Kallistos Ware notes, The spiritual value of the human body is firmly underlined by the central event on which the Christian faith is founded: Gods flesh-taking or incarnation.[ 50 ] In telling the story of the incarnation of God, the Christian Scriptures would seem to have embodiment at their heart. From the moment we are told that Mary has agreed to carry and give birth to a special child, bodies become sites of revelation and redemptive action. People are touched and healed. The dead are raised. Jesus feet are anointed, he throws over the tables in the temple, his hands and side are pierced. The life and death of Jesus as told in the Gospels are very physical. As Isherwood and Stuart note, He was not a philosopher simply
engaging the minds of people on his wanderings through the land. Here was an incarnate/embodied being.[ 51 ] From the point of view of the Gospels, the Christian message focuses on a particular body, the body of Christ, that takes away the sins of the world and brings redemption to the world and to each believer. The biblical account presents Jesus interacting directly with the sick and diseased, highlighting a radical difference between Jesus and the common attitudes and practices of the time. As Amanda Shao Tan notes, This was revolutionary behavior and must have been a shock to many people.[ 52 ] The Gospel stories show numerous examples of Jesus touching the diseased and the outcast. He is described as talking to blind Bartimaeus, healing the woman with the flow of blood, and touching the leper who asks him for healing.[ 53 ] Just as 45 in the Hebrew Bible, the people of Jesus time who experienced illness and disability were considered ritually and/or morally unclean and were thus prohibited from fully participating in the religious functions of the community. Since people with disabilities were also often poor and had to rely on begging to support themselves, they were regarded with double contemptas cripples and as poor people. But in the New Testament, just as in the Hebrew Bible, the sick and disabled were not totally excluded from all religious places, nor were they fully ignored. For example, the man with a paralyzed right hand and the hunchback woman were both found in the synagogue, a place for prayer and study.[ 54 ] The lame and blind were found in the temple with Jesus after his triumphal entry into Jerusalem.[ 55 ] In the scriptural record these bodies existed; there was a place for the sick and disabled, even if that place did not entail full participation in the life of the community. It is also interesting to note that the biblical accounts do not portray Jesus as attempting to heal everyone in Galilee; Jesus is even described as deliberately withdrawing himself from many who came to him for healing. The stories of healing seem to have been unique and specific to the people he encountered. Hearers from ancient to contemporary times are left with the task of interpreting these healing stories. Perhaps they were offered as proof of Jesus extraordinary power, or to distinguish his message from that of Jewish law. Perhaps bodily healing was metaphorical for spiritual health, or perhaps it was a pragmatic attempt to win converts. We do not know if physical healing actually happened. We must not look at the healing stories as historical accounts but, regardless of their factuality, remember that what has survived for us today is a message that was crafted for a specific audience with a specific purpose. Clearly, the image of Jesus as an embodied person committed to the practice of healing remains relevant in contemporary theological reflection. Paul: The Occasional Thorn Discussion of the physical body in the New Testament moves to a new level when we look at Paul. As John A. T. Robinson writes, One could say without exaggeration that the concept of the body forms the keystone of Pauls theology. In its closely interconnected meanings, the word soma knits together all his great themes.[ 56 ] Pauls use of soma includes the body of sin and death from which we are delivered, the body of Christ on the cross through which we are saved, the body of the Church into which we are incorporated, and the body of the Eucharist through which we are sustained. Unfortunately, Pauls view of the human body is often interpreted as dualistic, claiming the body to be separate from and inferior to the spirit. Many biblical scholars argue that this is not 46 the case. While Pauls comments about the flesh can be taken as demeaning (particularly in relation to women), they can also be interpreted as observations about the fallible nature of human beings.[ 57 ] For Paul, being in the flesh means relying on oneself or the law and not the power of God. When he talks of the body, he is attending not only to the physical but also to the social body. Paul constructs his message about this body for particular rhetorical purposes, and it is easy to take these comments out of context or to have difficulty placing them in a context that makes sense to modern readers. As Calvin Roetzel notes, Few who know him are neutral about
Paul. Some love him; others hate him. And so it has always been.[ 58 ] The term soma (body) occurs in the Pauline letters a total of ninety-one times. The bulk of the references to soma in the Pauline letters are expressions of the body/member(s) analogy. Paul also employs soma to mean the bread received in the Eucharist and for the community of the church, referring to both of these things as the body of Christ. Nowhere does he make a direct contrast between soul and body, except possibly in 1 Thessalonians 5:23: May your spirit and soul and body be kept sound and blameless. But even here his intention seems to be simply to describe the completeness of the person. When Paul does choose to assert a contrast, this is not between body (soma) and soul (psyche) but between flesh (sarx) and spirit (pneuma).[ 59 ] The two sets of terms are by no means interchangeable. Robert Jewett finds that Paul generally uses the word sarx to describe those urges for our own personal righteousness that keep us from God. In contrast, soma is used to describe the unity of the person and the possibility of relationship between persons.[ 60 ] Flesh, in Pauls usage, signifies not any particular body or physical aspect of bodies but rather total humanity (i.e., the soul and body together) insofar as it is separated from God. By the same token, spirit designates the human personhood in its entirety (again, body and soul together) when it is living in obedience to God. When he lists the works of the flesh, he includes things such as quarrels, envy, and party intrigues that have no special connection to the body.[ 61 ] As Paul sees it, the mind can become fleshly or carnal (Colossians 2:18), just as the body can become spiritual (1 Corinthians 15:44). For Paul, then, embodiment is an essential part of being human, and the body is intimately involved in the process of redemption. The final transformation is participation in the resurrection of Christ, during which the body will undergo a change similar to a seed as it germinates.[ 62 ] As Rudolf Bultmann writes, Soma belongs inseparably, constitutively, to human existence. The only human existence there iseven in the sphere of the Spiritis somatic existence.[ 63 ] Emphasizing human existence as bodily, Bultmann notes that Paul never uses soma to describe a corpse. Moreover, the body is so integrated into 47 human existence that, Bultmann claims, a human being does not have a soma, but rather is soma.[ 64 ] What believers did with their bodies was therefore an intrinsic part of Christian witness for Paul and one of the most obvious means of distinguishing followers of Christ from others. Pauls body theology veers between the radical and the conservative as he attempts to work out the implications of salvation in response to real people and situations. He disrupts the reproductive ordering of male and female bodies by recommending celibacy (1 Corinthians 7:3234) and proclaims the equality of all bodies (Galatians 3:28), but at other times he mimics the gender hierarchies and social-symbolic ordering of bodies found in the priestly writings (1 Corinthians 6:19). In the communities that Paul founded, the bodymost especially the body of the young malewas to enjoy none of the carefree moments of indeterminacy allowed it by nonChristians. The body was not a neutral thing; Paul firmly set it in place as a temple of the Holy Spirit. At the same time, Paul was determined that his own state of celibacy should not be adopted by the church of Corinth as a whole. To do so would have been to sweep away the structures of the pious household, an act that might have undermined Pauls own command. In his attitude toward marriage as in his tolerant attitude toward the eating of polluted foods, Paul sided with well-to-do householders who had the most to lose from separating from the non-Christian world, perhaps in part because it was these householders who supported his mission to the gentiles most effectively.[ 65 ] Pauls understanding was pragmatic as well as theological, often a subject of discussion and never unimportant to his ministry. An interesting aspect to Pauls understanding of bodies can be seen in the discussion of his thorn in the flesh. 2 Corinthians 12:610 reads: But if I wish to boast, I will not be a fool, for I will be speaking the truth. But I refrain from it, so that no one may think better of me than what is seen in me or heard from me, even considering the exceptional character of the revelations. Therefore, to keep me from being too elated, a thorn was given me in the flesh, a messenger of
Satan to torment me, to keep me from being too elated. Three times I appealed to the Lord about this, that it would leave me, but he said to me, My grace is sufficient for you, for power is made perfect in weakness. So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. What Paul meant by this thorn has been a subject of intense debate from the days of the early church and still is a subject of dispute today. The earliest view, 48 held by the Latin fathers as well as some modern proponents, understood the phrase to refer to a physical disorder.[ 66 ] For example, Tertullian believed Pauls thorn was a pain in the apostles head or ear. Other possibilities that have been discussed include epilepsy, hysteria, depression, headaches, leprosy, malaria, and even stuttering.[ 67 ] A modern interpreter, T. J. Leary, suggests that the thorn may have been a visual impairment, citing Galatians 6:11 that Pauls handwriting was larger than his scribes, and 2 Timothy 4:13, where Paul talked about parchment notebooks being easier to use than wax tablets for those with poor sight.[ 68 ] Other interpreters question the physical disorder interpretation, wondering whether anyone like Paul, who traveled so widely around and across the Mediterranean, could have done so while he was experiencing overwhelming physical problems.[ 69 ] An alternate interpretation suggests that the thorn was persecution. For example, Chrysostom took the thorn to represent Pauls opponents.[ 70 ] Jerry McCant argues that the thorn in the flesh was not a physical malady but referred to certain persons, most likely Christians in the Corinthian church.[ 71 ] Yet another interpretative tradition claims that the thorn was Satan or sin, a perspective accentuated in the Middle Ages when the thorn was associated with sensual temptations or spiritual trial, a perspective supported by the Vulgate rendering of thorn in the flesh as stimulus carnis. More recent versions of this view see the disturbance to be spiritual torment caused by demonic visitations or the pricking of the apostles arrogance.[ 72 ] The precise identity of this thorn has eluded interpreters for centuries, and this question, ultimately, is not resolvable. The strongest hypotheses involve some sort of human enemy or physical ailment. Either way, the affliction bore directly on Pauls stature and authority before the Corinthians, and so had social consequences within the Corinthian community. If the thorn was a human opponent known to the Corinthians, then the challenge to Pauls authority was direct and obvious. If the thorn was a physical affliction, then the Corinthians may have been concerned that Paul was unable to heal himself. As Susan Garrett notes, Whatever the identity of the thorn, the cross/resurrection paradigm governs Pauls reading of the divine response, for Christs resurrection had shown power made perfect in weakness (2 Corinthians 12:9) to be Gods characteristic design for Christian life.[ 73 ] As is clear even from this brief review, Pauls teachings about the body were more complex than they might at first seem, and contain much more than just the idea that the body is separate from and inferior to the spirit. We see in Paul someone who was struggling with how to craft a message that would be meaningful to the people of his time and relevant to a newly forming church. His use of body language to describe the Christian community has great potential 49 for embodiment theologies. Of course, what Paul had to say is not entirely positive, especially as we look at the theological relevance of the human body. At the same time, though, the ability to make clearer sense of the complexity and contextuality of even these aspects of Pauls message is useful as we examine his legacy in church communities today. In addition, Pauls discussion of the thorn might be valuable as we explore the theological relevance of the human experience of limitation, an example we will return to in later chapters as we discuss foundations for a theology of limits.
From Past to Present The tension that is evident in Paul over the nature and value of the human body has been played out in various ways throughout the history of Christianity. From both the Hebrew Bible and the New Testament stories, there was the possibility for a very earthy, fleshy, physical way to connect with ones God, which could have set the pattern for a positive approach to the body.[ 74 ] By the end of its first century, however, Christianity shared the unease about the body apparent in surrounding societies. Some early Christian thinkers proposed that the incarnation was a necessary evilGod endured incarnation to enable humanity to achieve the desirable state of disincarnationand others, who could not accept even that, wondered if Christ had not just appeared to be enfleshed.[ 75 ] In the midst of these early philosophical debates, it is also interesting to note that the ideas of health care reflected in early Christianity were an important factor in attracting converts and may have contributed to the rise of Christianity itself.[ 76 ] Thus ambivalence toward the bodyincluding the different or disabled bodyis found not only in the scriptural tradition but also in the early positions and practices of Christianity itself. As early Christianity became institutionalized, so too did the conviction that the human body was something to be overcome, or at least ignored, especially in the doing of theology. Tertullian, Irenaeus, Clement, Augustine, and many others offer us great sound bites regarding the devaluation of the body (although their individual positions on embodiment are often far more complex than this). By the Middle Ages, the Gregorian reform, Scholasticism, and other aspects of religious and intellectual life (especially notions of penance and hell) emphasized this move toward spiritualization; simultaneously, however, medieval spiritualityespecially female spiritualitywas particularly bodily.[ 77 ] Similarly, while the Protestant Reformation could be described as a retreat from embodiedness to inwardness, we also see a challenge to traditional notions of virginity and sexuality (highlighted in the dismissal of demands of celibacy for clergy). From Descartess work on the relationship between mind 50 and body to the Romantics attention to beauty and sensory experience, the role and value of the body has scarcely escaped attention. As we move to look at interpretations of embodiment in the contemporary age, we cannot forget the long and complex inheritance that serves (as Delwin Brown reminded us earlier) as our raw material for new theological construction even as it continues to function in expected and surprising ways through the continuities and discontinuities of tradition. Disability and Contemporary Theological Reflection No matter how well we describe Christianity as a religion of the body, the actual history of attitudes toward the disabled body is complex and, in most cases, does not occasion optimism. As Stuart notes, It is one of the paradoxes of the Christian scriptures and tradition that disabled people are everywhere and nowhere at the same time.[ 78 ] Christian interpretations of disability have run the gamut from portraying disability as a symbol of sin to being an occasion for supererogation. These interpretive images appear throughout religious language, scripture, worship, religious education, leadership, and all aspects of Christian life.[ 79 ] Disability is interpreted as punishment for ones own sin or for the sin of ones parents, a test of faith, an opportunity to build character or to inspire others, an occasion for the power of God to be made manifest, a sign that one lacks faith, or simply a mysterious result of Gods will.[ 80 ] Language exemplifies these notions: people with disabilities are often called saints, angels, courageous, blessed, or special witnesses to God. Scripture is used to reinforce these ideas, whether it valorizes weakness (2 Corinthians 12:9), reveals disability as an opportunity for Gods self-revelation (John 9:3), or implies that there is a special place in Gods kingdom for the disabled (Luke 14:1624). Unfortunately, these interpretations too often mean that when people with disabilities have been considered at all by religious communities, they have been looked at as objects to be avoided, admired, pondered, or pitied very rarely have people with disabilities been considered first as people. In addition to contributing to a model of God as a great puppeteer who controls and determines everything, including (but not limited to) experiences
of disability, these explanations lack recognition of (and even deny) the personhood of the person with the disability. One particularly ingrained image is that of God as divine Father and human (especially a disabled human) as child. Jennie Weiss Block discusses the implications of viewing a person with a disability as an eternal child. She writes, This creates a situation where reasonable developmental demands are not made and the individuals are not held accountable for their actions.[ 81 ] She 51 suggests that this also promotes treating a person as if they were a child in an adult body, which denies the persons sexuality and can lead to inappropriate behavior.[ 82 ] As an example, she notes that adults with disabilities speak of being spoken to and treated like babies or children. In religious terms, this model can lead to a person with a disability being viewed as a holy innocent, without sin, incapable of any wrongdoing, saved by virtue of their disability.[ 83 ] For example, she notes that people with developmental disabilities are told in some religious communities they do not need the sacraments because they are already going to heaven. Feminist theologians and others have raised many of the problematic implications of Father and child language, but it is important to add to these critiques an analysis of the ways in which this image contributes to the characterization of people with disabilities as children with limited agency. Under this model, the person with a disability is assumed to lack capability, responsibility, culpability, and almost any sort of ability assumptions that carry significant theological weight. The Father and child model, like the medical model, ignores individual and corporate agency and often implies limited access to responsibilities and power. The power/control Father image is theologically suspect not only in terms of Gods identity but also for what it then necessarily implies about human identity and ability or disability. For some who have rejected the Father and other anthropomorphic power/control images of God, the question of why there is disability instead receives this contemporary liberal answer: God does not cause disability. It is not Gods fault. Perhaps God put the laws of nature into motion and then stepped back. Perhaps disability is just part of the way the universe works. As we will see in the next chapter, Sallie McFague is an example of a contemporary theologian who appeals to randomness to explain the existence of disability and other related experiences. For many people with disabilities, the randomness explanation makes more sense than to imagine an old man in the sky who decides certain people should experience life with a disability. Yet there are significant concerns that come with this appeal to randomness. First, given societal interpretations of normalcy, there tends to be an implicit notion not only that a persons disability is random but also that it is a random aberration (a negative value is placed on this instantiation of randomness). Second, the explanation of randomness is not applied evenly: disability is seen as random, but ability often is not, at least within the context of theological reflection. In addition to not going far enough to challenge negative assumptions of the past or to take sufficient account of the diversity of actual human embodiedness, the randomness response can also be a theological cop-out. While some theological and philosophical approaches do reflect on random or chance occurrences, others take a lack of causality as meaning the situation is no longer interesting for 52 reflection. We ought not say God does not cause disability and leave it at that. Experiences of disability, and of all human particularity, can be valuable data for theological reflection. Rather than dismissing the experience of disability as part of the uninteresting randomness of life, we ought to instead reflect upon what the existence of disability, as well as the unique experiences of particular individuals with disabilities, can show us about our theological claims and constructions. Attending to the three different models of disability described in the first chapter, the next three chapters will explore ways in which we might reflect on disability as a meaningful source for theological reflection.
This chapter describes the move to attend to local perspectives, including the particularity of embodiment, in contemporary theology. Sallie McFague is one of the few theologians who has made a specific effort to develop a systematic theology based on notions that emerge from the standpoint of embodiment. Her model of the world as the body of God provides a valuable way for us to consider thoughtfully the natures of and relationships between the world and God. The chapter describes and evaluates McFague's model and explores ways in which attention to disability can expand and strengthen McFague's own work. Beginning with the medical model's observation that bodies are diverse, fluid, and differ in ability, the chapter explores the implications of imagining embodied diversity as part of the body of God, and emphasizes the importance of reconsidering existing theological models in light of disability. Sallie McFague embodiment theology models body God medical model diversity
are named most bluntly in Mary Dalys famous convention: If God is male, then the male is God.[ 4 ] By using jarring phrases such as the sisterhood of man, Daly demonstrates that terms and theologies are not universal and all-inclusive, and, as a result, necessitate what she terms a castrating of language.[ 5 ] Similarly, Rosemary Radford Ruether suggests that we cannot yet answer the question Can a male savior save women? because the full humanity of women is not fully known.[ 6 ] As she explains, The uniqueness of feminist theology lies not in its use of the criterion of experience but rather in its use of womens experience, which has been almost entirely shut out of theological reflection in the past. The use of womens experience in feminist theology, therefore, explodes as a critical force, exposing classical theology, including its codified traditions, as based on male experience rather than on universal human experience.[ 7 ] Similar challenges to the falsehood of so-called universal claims are made in other liberation theologies. In his argument for the blackness of Jesus, James Cone argues that white academic theologians fail to recognize that other people 55 also have thought about God and have something significant to say about Jesus presence in the world.[ 8 ] Similarly, Gustavo Gutirrez demands, based on the experiences of the oppressed and exploited land of Latin America, that theologians reconsider the great themes of the Christian life within this radically changed perspective and with regard to the new questions posed by this commitment.[ 9 ] Daly, Ruether, Cone, and Gutirrez are early examples of theologians who challenged the viability of universal theologies and argued that experiences of difference must be recognized for reasons of justice as well as theological adequacy.[ 10 ] This challenge has continued within womanist, mujerista, native, queer, and other liberationist movements, where local perspectives have increasingly been highlighted as legitimate sources for theological reflection and construction. However, as demonstrated quite clearly by the title of the book All the Women Are White, All the Blacks Are Men, But Some of Us Are Brave, each new voice has also witnessed continuing universalizing tendencies.[ 11 ] In each movement, some local perspectives are highlighted, but others are ignored, whitewashed, or straightened out. Even in the deliberate attempt to recognize difference, the full range of human experience is overlooked too often. This becomes clear especially from the perspective of disability: even within theological movements where we would expect to see particular and intentional inclusion of the diversity of bodies, disability has been strangely absent. Disability is rarely mentioned within theologies that otherwise attend to identity particularities (e.g., even as feminist theology and queer theology have attended explicitly to the body, especially in relation to sexuality, they rarely address diversity of ability or embodiment), and disability itself has not yet emerged as a theological lens (e.g., there has not yet been a fully articulated feminist disability theology).[ 12 ] There is a surprising absence of disability as a topic in academic and professional journals.[ 13 ] Textbooks and readers on religion and theology routinely fail to mention, let alone reflect on, experiences of disability.[ 14 ] Other works mention disability only in passing, as part of a list of other diversities, but fail to treat these issues as relevant for theoretical or theological construction. Even cutting-edge work on gender, race, and sexuality still assumes a generically healthy body to be normative. Disability is invisible, even within theologies interested in embodiment. As we look for possible ways to include disability reflection into the realm of theology, one approach is to continue to push existing theological models to attend to and include this level of diversity. Just as African American women challenged white feminists to include them in feminist theology, those who identify with disability can also raise our voices and challenge other movements and theologies to be more inclusive. We see this happening in a few loci within 56 theology; similar inclusion has been seen recently in other disciplines such as educational theory.[ 15 ] In addition
to this essential pursuit of recognition and inclusion, we must also ask a deeper question: What would it mean to take the body (in all its diversity and fluidity) seriously in constructive theology? Embodiment Theology Embodiment theology offers a constructive and deliberate alternative to the lack of attention paid to genuine embodiment in traditional theological reflection and construction. At its core, embodiment theology is about a change in perspective, a decentering and recentering, according to Sallie McFague.[ 16 ] It begins with the notion that we live embodied lives, and that there are no exceptions. James Nelson, one of the first to use the term body theology, writes a descriptive account of this perspective: Body theology starts with the fleshly experience of lifewith our hungers and our passions, our bodily aliveness and deadness, with the smell of coffee, with the homeless and the hungry we see on our streets, with the warm touch of a friend, with bodies violated and torn apart in war, with the scent of a honeysuckle or the soft sting of autumn air on the cheek.[ 17 ] Nelson emphasizes the real, concrete, sensory everyday experiences and particularities of the human embodied experience. He describes the theology that grows from this as nothing more, nothing less than our attempts to reflect on body experience as revelatory of God.[ 18 ] Embodiment theology, as it has developed since Nelsons early work, is more than a reflective or evocative pastime. Beginning as it does with the extreme particularity of embodied experience, body theology proposes a unique challenge to universal claims and assumptions. As it has grown out of liberation concerns related to gender and sexuality, the political as well as the experiential is highlighted. As Lisa Isherwood writes, Working through the body is a way of ensuring that theories do not get written on the bodies of others who then become marginalized and objects of control.[ 19 ] Attention is paid to issues of power and naming, to the political as well as the personal. Embodiment theology is concerned with all that is written on, of, or by the body, going far beyond sensory experiences to include science, politics, economics, media, and many other concerns of postmodern life. As we approach the topic of embodiment and theological reflection, John Dunnill reminds us of an important caveat: Anyone who is now reading this must be an embodied being. How else could you be reading? Since what I want to write about is the 57 body, it is important to acknowledge at the outset that being bodies is a condition we all share. It may be obvious, but that very obviousness is significant: we take it for granted because we have all been bodies for so long. We have together a mass of experience of being bodily, and that ought to mean something. Yet we do not often think about what it means to be bodily. In fact thinking about it at all is a bit embarrassing. We avoid the subject, on the whole, unless circumstances force it on us, as when we are ill. It seems we are constitutionally uneasy about being bodily.[ 20 ] Embodiment theologies begin by noting that we have not taken our bodies seriously in doing theology. They assert that we not only have but are bodies, and that when we reflect theologically we inevitably do it as embodied selves. In a way, then, theologies have always been embodied because all theologies have been explored and lived by people with bodies. Our bodies make our reflections possible; they also influence our theological perspectives. Through our particular bodies, each of us knows the world in particular and unique ways, and this knowledge influences our theological reflections. The role of our bodies (in fact, the necessity of our bodies) must be acknowledged as an unavoidable part of theology. Embodiment theologies begin with a conscious focus on these issues, taking reflection on embodied experience seriously as a critical source for the doing of theology. Reflection on experiences of embodiment challenges, and in fact subverts, the notion that we can engage theological topics from a detached, intellectual (i.e., disembodied) position. In some arenas, this claim is a
familiar one. From the early work of Ruether and Daly to contemporary writings in feminist, liberation, womanist, mujerista, queer, and other theologies of difference, the argument is credibly made that gender, race, orientation, and so on do make a difference in our theological reflections as well as the ways in which we move through the world. Even in the move from understanding difference as essential to seeing it as historically constructed, academia is comfortable with the claim that these particularitiesthese aspects of embodiment make a difference (even if it is still an object of debate as to what these differences might be as well as from where they come). We are not, however, accustomed to thinking about these issues in terms of other aspects of embodiment. What difference, for example, do labels such as able/disabled, young/old, strong/weak, or athletic/couch potato make? Are experiences of pain, illness, or limitation relevant? Does a cold or arthritis or cancer affect theological reflection? Should they? Body theology, as with reflection on the body in other disciplines, is now beginning the important project of engaging bodily differences and exploring 58 how these varied embodiments might contribute to our understandings and interpretations of the world. This can be seen most clearly in recent attention to theology and fitness,[ 21 ] bioethics,[ 22 ] pain,[ 23 ] and sexuality.[ 24 ] McFagues Contribution Sallie McFague is one of the few theologians who has made a specific effort to develop a systematic theology based on notions that emerge from the standpoint of embodiment. She provides us with one of the most complete and influential examples of the shift to recognize local perspectives in a way that avoids many (though not all) of the universalizing tendencies of her predecessors. In particular, her model of the world as the body of God provides a valuable way for us to thoughtfully consider the natures of and relationships between the world (human and nonhuman) and God. For McFague, this profound embodiment leads to an environmental ethic where we are called to treat the earth as if it were the literal body of God, caring for the environment much as we would care for a friend or even for God directly. However, she notes that the claim that the world is Gods body can lead to other insights or questions as well, inviting us to join her in this project. As we shall see, McFagues model does more than offer us a framework for a Christian theology that can be open to reflection on the fluidity and diversity of embodiment; I also suggest that theological reflection on disability can strengthen McFagues own argument in a manner consistent with her overall approach to God and bodies. Building on her early work on metaphorical theology, McFague has committed her academic life to developing and analyzing models of God that seem most appropriate for our day, searching for those that best fit her criteria of coherence with both the Christian tradition and the scientific worldview. With an understanding that all religious language is metaphorical, she argues that theologians are charged with the task of finding and using the the best images available to us in order to say something about the divine.[ 25 ] To elaborate, she explains: The choice of theological models is neither arbitrary nor absolute; models are selected and survive because they make sense out of human experience. Certainly, they are required to fit with our experiences of God, but their range, since they deal with the divine-human relationship in its many implications, goes far beyond any narrow view of that relationship. Major theological models are not 59 merely religious but encompass all dimensions of life in the world. Thus, we must demand, if we are to reject a ghetto Christianity, that these models also fit with and illuminate all ways of looking at the world and all truths about life we hold to be significant.[ 26 ] This concern with good models and metaphors permeates McFagues later work. She proposes pragmatic criteria, suggesting that we must look at whether specific images lead to helpful or harmful results.[ 27 ] She rejects traditional patriarchal and imperialist images of God,
seeing them as opposed to the continuation and fulfillment of life, and she gives examples of nuclear annihilation and womens oppression as destructive outcomes of these traditional models. This leads her to the work for which she is perhaps best known, her proposal of the metaphors of God as mother, lover, and friend.[ 28
]
For McFague, our choice of models ought not be arbitrary, and so she offers four criteria for good models: continuity with the basic Christian paradigm, commensurability with postmodern science, a concern for the well-being of our planet, and consideration of actual embodied experience.[ 29 ] The first criterion, continuity with the basic Christian paradigm, is important to her because this is what locates her work within Christian theology (rather than an alternate religious tradition or worldview).[ 30 ] The second, commensurability with postmodern science, is important for McFague because she argues that just as theology has always understood its central beliefs in terms of the picture of reality in different times, so reflective Christians today are also called to the task of understanding their faith in light of the current picture of reality.[ 31 ] She sees this not only as an issue of credibility but also as one of pragmatic concernthe scientific worldview tells us things that we need to hear and understand for the future well-being of the world.[ 32 ] The third criterion, concern with planetary well-being, is also a pragmatic one in that it recognizes that (from McFagues perspective) religion is irrelevant if we destroy our planetary home. Finally, her concern with embodied experience draws upon her understanding of epistemologyher belief that knowledge comes mediated through bodies. Thus, for McFague, a model or metaphor is good insofar as it coheres with these four criteria, and especially insofar as it leads to pragmatically good outcomes.[ 33 ] McFagues book The Body of God attempts a systematic theology based upon the model of the world as Gods body, a model briefly mentioned in her earlier work and one that she has come to see as particularly valuable due to its nonanthropological emphasis. In this book, she attempts to look at everything through one lens, the model of the universe or world as Gods body. using 60 the lens this model provides, we ask what we see and what we can say about various dimensions of the relationship of God and the world.[ 34 ] As with other embodiment theologies, she highlights stories that describe the God-human-world relationship as located in and interpreted by bodily experience. She argues that all relationships are between bodies, including the relationship between human beings (or the nonhuman world) and God. Thus her main goal in this book is to lead the reader to think and act as if bodies matter.[ 35 ] McFague suggests that this is especially appropriate within Christianity, which she calls the religion of the incarnation par excellence.[ 36 ] Noting such central themes as the incarnation, resurrection, and the church as the body of Christ, McFague argues that Christianity is and always has been a religion of the body. As such, she sees it as especially relevant that Christian theology return to a consideration of the role that particular embodied experience plays in religious thought and practice. In addition, as with her prior work, she believes that the model of the world as the body of God is one that is perhaps the most good (given her earlier criterion) for this time and place. We will return to her specific claims from this book later. It is important to note at this point that McFague intends her model of the world as the body of God to be just thata model. She writes that it represents one square in the quilt, one voice in the conversation, one angle of vision.[ 37 ] The model of the universe as Gods body does not see nor does it allow us to say everything, and it is not meant to replace all other models. It is, from her perspective, a particularly good model because it is in line with the view of reality coming to us from contemporary science and because it is in line with what she identifies as key Christian stories and teachings. As noted earlier, McFague also argues that this model is especially important and even indispensable based on the state of the world today. She writes that this model is certainly not the only context within which we need to understand ourselves, our world, and God, but it is a necessary one an offering that Christianity can make to the planetary agenda of our time, the agenda that calls for all religions, nations, professions, and people to reconstruct their lives and their work to help our earth survive and prosper.[ 38 ] In other words, she suggests that the model of the body of God is only one model, but one that is neglected, essential, illuminating, and helpful both to Christian doctrinal reformulation and to
planetary well-being.[ 39 ] McFagues construction is particularly helpful in the way that she develops an entire systematic model around the notion of embodiment. She gives us the clearest interpretation and description to date of embodiment theology, including sources, methodology, systematic criteria, and implications. As we look at the critical and constructive possibilities for embodiment theology, McFague offers a good starting point. 61 Defining Characteristics of the Body of God McFagues model of the world as the body of God has both epistemological and ontological implications. First, she argues that we must recognize that it is embodied creatures, not disembodied ones, who do theology. Knowledge is necessarily related to the experience of embodiment. We encounter, reflect upon, and understand the world as bodies, not as disembodied minds or souls. As a result, she demands that any authentic theology begin with an awareness of our own bodies and the bodies of others. She calls this attention epistemology. Taking this perspective as a primary interpretive lens, she asks us to think about what it would mean, for instance, to understand sin as the refusal to share the basic necessities of survival with other bodies? To see Jesus of Nazareth as paradigmatic of Gods love for bodies? To interpret creation as all the myriad forms of matter bodied forth from God and empowered with the breath of life, the spirit of God? To consider ourselves as inspirited bodies profoundly interrelated with all other such bodies and yet having the special distinction of shared responsibility with God for the well-being of our planet? Such a focus causes us to see differently, to see dimensions of the relation of God and the world that we have not seen before.[ 40 ] McFagues position is that, however else we might believe we have knowledge of God (or of anything else), this knowledge is at the very least mediated through our bodies, if not grounded in embodiment altogether. For McFague, whatever more or other we may be, we are bodies, made up of the same stuff as all other life-forms on our planet.[ 41 ] Any knowledge that we have of God, or any understanding we have at all, comes through and is impacted by particular experiences in particular bodies. The second key aspect of McFagues theology relates to ontology: she claims that the world is Gods body. McFagues notion of God is panentheisticshe does not reduce God to being equivalent to the world, but she does place the world very directly in God, noting that everything that is, is in God and God is in all things and yet God is not identical with the universe.[ 42 ] Or, stated more simply, God is incarnated in the world.[ 43 ] Even more striking for this project is McFagues claim that the body of God is not a body, but all the different, peculiar, particular bodies about us.[ 44 ] McFague uses this claim as the foundation for her environmental ethic, where the entire world around us (human and nonhuman) participates in (is) the body of God. However, she notes that this claim can lead to other questions and insights as well. McFague does not raise the issue of disability in her work, but it is easy to move from discussion of 62 peculiar, particular bodies into theological reflection on human experiences of disability. McFagues model proposes specific characteristics of God based on her criteria of coherence with the Christian tradition and the scientific worldview. These criteria lead her to reject the traditional monarchical model of God as Lord and King, which she sees as especially dangerous. Citing Gordon Kaufman, she describes this as a pattern of asymmetrical dualism in which the world and God are only distantly related, and all power and responsibility reside in God.[ 45 ] The monarchical model also suggests that God is apart from and other than the
world. McFague argues that while this model has a strong psychological pull (making us feel good about God and about ourselves), its characteristics are inappropriate for a model of God in light of our current world situation. She names three major flaws: God is distant from the world, relates only to the human world, and controls that world through domination and benevolence.[ 46 ] These flaws lead to logical conclusions: it is of no importance what one does in and for the world because it is not the kings primary residence, the natural world is unimportant in relation to the human world, and humans have no power to make productive changes. The direct result of this model of God, according to McFague and presented in her Lament for the Planet, is that Christians have become the enemy of the planet and the perpetrators of the ecological crisis (as well as many other forms of oppression).[ 47 ] McFagues concern, then, is with a model of God that at least should do less harm.[ 48 ] Her model does not allow God to be apart from the world but instead radicalizes both divine immanence (God is the breath of each and every creature) and divine transcendence (God is the energy empowering the entire universe).[ 49 ] She sees this as a particularly relevant model for our time because it encourages us, in her words, to focus on the neighborhood.[ 50 ] The image of power that is present in this model is one of mutual flourishing rather than power over or power from outside, and is based on the basic recognition that the whole (including God) will not flourish unless the parts are thriving. McFague sees examples of this power in the Christian stories of Jesus. She reads John 1:14, And the Word became flesh and lived among us, as an affirmation of the physical availability of Gods presence and of Gods affirmation of embodiment. Bodies are not contrary or opposed to God; rather, it is Gods nature to be embodied. She creatively retells the stories of Jesus healing and eating practices, focusing attention on bodily pain and bodily relief. For McFague, these stories prove that the body of God includes everyone, particularly those who have been excluded. Similarly, the incarnation shows that God both values and participates in bodily reality. The emphasis on mutual flourishing through interrelated embodiment is the defining characteristic of God in this model. 63 McFagues model also has specific implications for our understanding of anthropology. It follows from her description of the common creation story that she is concerned that we accurately recognize where humans fit into the scheme of things. This involves an awareness of both place and spacethe earth is our home (our place), but it is the home of other beings as well (not simply our space). According to McFague, awareness of both place and space leads to a focus on gratitude for the gift of life rather than a longing for eternal life; an end to dualistic hierarchies, including human beings over nature; an appreciation for the individuality of all things rather than the glorification of human individualism; a sense of the radical interrelatedness and interdependence of all that exists; the acceptance of responsibility for other forms of life and the ecosystem, as guardians and partners of the planet; the acknowledgment that salvation is physical as well as spiritual and hence, that sharing the basics of existence is a necessity; and, finally, the recognition that sin is the refusal to stay in our proper place.[ 51 ] For McFague, and for others in the Christian tradition, sin is living a lie: it is the refusal to accept our place and our proper limits so that others, human and nonhuman alike, can have the space they need to survive. We live this lie, she says, in relation to other human beings, to other animals, and to nature itself. By looking at who we are in the picture of contemporary science, we see that we are, on one level, mundane, of this world, and radically interrelated. On another level, we see that we have power and responsibility, and both the ability to destroy the world and to help creation continue. Humanity, she says, is profoundly responsible.[ 52 ] She believes that the story of space and place fits especially well with the Christian story, embracing humanitys role as Gods partner in creation. McFague suggests that the model of the world as the body of God has implications for all of the traditional
themes in theology. In addition to her clear emphasis on notions of God, Jesus, humanity, and sin, she believes that her model is Trinitarian, preserving both the radical immanence and the radical transcendence of the divine. McFague has a very clear notion of salvation that includes the natural world. She writes, Creation as the place of salvation means that the health and well-being of all creatures and parts of creation is what salvation is all aboutit is Gods place and our place, the one and only place. Salvation is for all of creation.[ 53 ] The church, for her, is both a sign of this new understanding and one of the responsible parties in its development: a critical social body helping to bring about the new reality.[ 54 ] She defines 64 ethics most clearly in her later books as thinking and acting in ways that are consonant with this model and beneficial to all creation. It is important to note that McFagues model not only reflects and interprets traditional Christian themes but also is influenced by other theological commitments. She does not rely solely on a scientific or ecological interpretation of the metaphor. Her commitments are seen most clearly in her call for solidarity with the oppressed, a nebulous proposal if based only on observation of the natural world. At a basic utilitarian level, we see that all of creation is interdependent, and that one life depends on many others in order to survive; however, the natural world often looks like it is more about the strong overcoming the weak than solidarity with the oppressed. One wonders what solidarity might even mean for a tree or an ocean. Moving beyond the common creation story and the testimony of nature, McFague appeals to what she calls the scandal of Christianity, demanding that humans engage in solidarity with the outsiders, the outcasts, and the vulnerable.[ 55 ] She admits that this is beyond the initial scope of her model, writing that neither biological nor cultural evolution includes this radical next step of identification with the vulnerable and needy through the death of the self.[ 56 ] However, she does not see this commitment as completely opposed to the evolutionary model: Solidarity with the oppressed, then, becomes the Christian form of both consonance with and defiance of the evolutionary principle. It is consonant with it because it claims that there is a next stage of evolution on our planet. it is defiant of it because it suggests that the principle needed for this to occur is not natural selection or the survival of the fittest, but the solidarity of each with all.[ 57 ] McFagues commitment to what she calls the Christian paradigm demands that the model of the body of God be interactive and go beyond the simple application of the metaphor to engage with other sources as well. As we apply the model, she suggests that we gain an understanding of God by examining and interpreting bodily experience, both human and nonhuman. At the same time, we understand our own place and role in the cosmos by drawing on other sources for knowledge of God, which for her include the Christian stories of Jesus. Evaluating McFagues Model As was noted earlier, McFague offers four criteria for theological adequacy: continuity with the basic Christian paradigm, commensurability with postmodern science, a concern for the well-being of our planet, and consideration of actual embodied experience. It can be argued, and in fact has been by McFague herself, that her model fails (at least to some extent) in each of the four criteria. Some have wondered how well her model can actually fit within Christianity, 65 claiming that she does not take sufficient account of traditional images of God or of the uniqueness of the story of Jesus.[ 58 ] Others note that her readings of Christian history and her conception of the Christian paradigm are at times simplistic or creative at best, suggesting that she misrepresents the theological tradition.[ 59 ] Some challenge her scientific interpretations, noting that she proposes more unity and coherence to the world than might be allowed by postmodern science.[ 60 ] Critics also wonder whether her approach to planetary well-being is appropriate, whether it makes sense to erase all differences between the human and nonhuman world, and whether we should love all of nature.[ 61 ] In fact, in Life Abundant, she herself questions whether this model can
contribute in any way to planetary survival.[ 62 ] A few critics have suggested that McFagues criteria lead us toward a cultural and moral relativism because they emphasize only what is best for our time, leaving no clear guidelines for future evaluation or suggesting any intrinsic value to nature or other aspects of this model.[ 63 ] Another common criticism is that these criteria necessarily limit the scope of her project, emphasizing only middle-class Christians living in the postindustrial world and failing to draw on other religious or cultural resources.[ 64 ] Both her choice of criteria and her application of them have received extensive critical review.[ 65 ] In the midst of all this discussion, McFagues adherence to her fourth criterion, consideration of actual embodied experience, has received scarce critical attention. A few commentators have wondered whether reflection on human experience is an appropriate theological starting point for McFague.[ 66 ] Others have looked at her epistemological commitments more generally, particularly her reliance on embodied experience.[ 67 ] However, none have analyzed or challenged the sorts of experiences she takes into account as sources for knowledge of God or for evaluation of the model. McFague argues that one of the criteria by which we should evaluate a model is the degree to which it makes sense of actual embodied experience. Thus it is my argument that an appropriate test of McFagues model of the world as the body of God is to examine it from the perspective of disability. As we shall see, McFagues analysis is incomplete insofar as it overlooks the full diversity of human (as well as nonhuman) embodied experiences and overlooks the theological insights that may be gained from reflection on these differences. McFagues Model and Reflection on Disability At one level, McFagues work would seem to be well suited for theological reflection on experiences of disability. Her model focuses our attention on 66 significant epistemological and ontological issues related to God and bodies, asking how our particular bodies affect what we know (about ourselves and about God) and how our particular bodies affect what is (including divine and human nature). It is perhaps the most ambitious model to date to reflect on embodied experience as foundational for theology. This model is an especially relevant starting point when we look at human experiences of disability because it gives us a way to incorporate embodied experiences into our theological reflection and construction. By applying her model to a wide variety of theological issues, McFague demonstrates how such a starting point can ripple throughout the traditional concerns of theologyincluding the nature of God, interpretations of the stories of Jesus, understandings of sin and salvation, and foundations for ethicsand can offer implications for religious practice. In contrast to the frequent disregard and disdain for the body found in Cartesian idealism, Platonism, Neoplatonism, and contemporary deconstruction, McFagues model of the common creation story starts instead with the mundanity of embodiment and the peculiar forms of unity and differentiation characteristic of that story.[ 68 ] She suggests that this perspective would support, though of course not demand, a view of meaning and truth that takes seriously the diversity of embodied sites from which human beings make such claims: the sites that take into account race, class, gender, sexual orientation, handicapping situations, and so forth. Since there is no one universal, ideal embodiment but many, diverse forms of it, truth and meaning for human beings must begin from these embodied locations.[ 69 ] McFague seems very aware that there is not and ought not be any single ideal for embodiment, and that embodiment appropriately takes a wide variety of forms. For her, this is part of the nature of the world, as well as the body of God. She claims this powerfully in her statement that the particular, concrete, situated differences among human beings, who at the same time exist together within the body of the planet, must be starting points for knowing and doing, for embodiment is radically particular.[ 70 ] According to McFagues own
model, it is the diversity of experiences of embodiment, including, for example, experiences of disability, that must ground reflection and practice. Unfortunately, McFague herself fails to follow her own claims to their fullest implications. Her application in The Body of God and elsewhere is inconsistent with her notions of what embodiment is all about. Instead of attending consistently to diversity, she herself exhibits idealizing tendencies. This lack of coherence with her own criteria of attention to embodied experiences takes 67 three main forms. First, in many of her mentions of the human experience, she seems to assume a healthy or, at least, generic body to be normative. She rarely talks about human bodies as if they contain varied and specific differences but treats them as if they were all the same. Second, she fails to reflect critically on the diversity of the human embodied experience, including the experience of disability. As will be argued later, such reflection could in fact have supported and enhanced her project, but for the most part she ignores such differences. Finally, when McFague does address experiences of difference, she minimizes these as being simply part of the randomness of life and seemingly unimportant for theological reflection. While these events may be and, within her model, most likely are attributable to randomness, the failure to reflect upon what can be learned from these experiences leaves us theologically impoverished and is inconsistent with her practice in relation to other random occurrences. By normalizing, ignoring, and dismissing human particularity, she fails to draw on theological possibilities that would contribute to her own project. For a reader who is sensitive to issues of disability, it is striking that McFague tends to discuss the human body as if it were the same in all its instantiations. She does not pay much attention to experiences of difference. This makes some sense in light of her specific project, which is to emphasize our relation to and responsibility for the nonhuman world. In the introduction to The Body of God, she notes that this work cannot give the needed concrete, detailed attention to such complex issues as racial and sexual discrimination, physical violence, sexual abuse, or compulsory heterosexuality.[ 71 ] The project of her work is not to attend to human differences, and she is aware of this limitation. Yet it is still surprising that she talks about the human body as if it were one uncomplicated thing. Some of this is quite innocent and appears in the way she uses the term we in a way that universalizes rather than acknowledges differences in experience. Her generalizing can also be seen in the actions that she proposes in response to her model: that we should be more sensitive to our use of space, that we should be more aware of the other, that we need to better attend to issues of justice. As was noted in chapter 1, people with disabilities often have a perspective from the underside, a place from which these comments would be inappropriate or irrelevant. In such examples, McFagues use of the word we is not accessible to many people with disabilities. Even her notion of the body as a relevant starting point for reflection on God ignores the often complex and ambivalent relationship that we have with bodies: as Anne Clifford notes, McFague neglects the fact that the body of every concrete earthly being eventually dies and decays.[ 72 ] Related to her lack of attention to the diversity of human embodiment, McFague fails to reflect specifically on the experience(s) of disability. Again, 68 this is not entirely surprising given her commitments and overall goal. Hers is one square in the quilt, one voice in the conversation, one angle of vision.[ 73 ] She does not claim that her model is comprehensive. Yet, because the notion of body is so central to her work, it is surprising that she does not look more closely at specific instantiations of embodiment, such as experiences of disability, before suggesting that we image God as a body or bodies. When she discusses reinterpretations of Jesus, conceptions of sin and salvation, or the role of the church, she does not reflect on or take into account diversity of embodiment, human or otherwise, even though such reflection has the potential to contribute to her proposal. If reflection on bodies tells us something about the nature of God, according to her epistemology and criteria for adequacy, it is then a shortcoming of her project that she fails to attend to experiences of disability. Her model would have been enriched by such
attention, particularly in the ways that reflection on experiences of disability offers new constructive possibilities, insights, and perspectives on anthropology and on the relevance of particular models of God. Finally, when McFague does address experiences of difference, she minimizes these as being simply part of the randomness of life and seemingly unimportant for theological reflection. Her notion that diversity is random does, in some ways, fit appropriately with the ecological model. She writes, for example, that my life, your life, all life, is a chance happening; so also are birth defects, cancer cells, and AIDS.[ 74 ] This is, to a degree, consistent with scientific understandings of evolution and natural selection, although even scientists might question her use of the word chance, since evolution, though not necessarily purposeful, is more reasonable in some ways than pure chance allows.[ 75 ] McFagues failure comes when she refuses to reflect on these experiences and dismisses them as a product of chance. She appropriately rejects theodicies that are based on anthropological models of God, as these are inconsistent with her model. For example, she denies that events such as birth defects or AIDS are caused by God in order to test an individual or to demonstrate Gods power or will. She states what these experiences must not mean according to her model, but does not reflect on what they may or do mean, or what insight they may give to understandings or constructions of self or God. For example, when she mentions a woman killed in an accident or a baby born with birth defects, she states that God is not the cause of these events and cannot be if we take seriously the contemporary scientific picture of reality, but God is with us in the consequences.[ 76 ] Her response, which she claims relies upon the scientific worldview, is to say that experiences such as these are just part of the whole of life and are something to be accepted as such. God is with us in those experiences. God suffers with us. That is all she has to say. 69 Rather than overlooking or dismissing particularity as part of the randomness of life, McFagues model ought to lead us to a perspective that takes particularity as a significant datum for theological reflection. Following McFagues claim that the body of God is not a body, but all the different, peculiar, particular bodies about us, we are turned toward important questions such as: What are the implications of this model if we say that the body of God includes disabled bodies, or can be conceived of as being disabled itself? What is that nature of God if we understand the world, including the presence of disability and difference, to be Gods body? How do specific answers to these questions affect church, faith, and community? These questions, as I have suggested, are prompted by McFagues model but are not addressed in her work. The Disabled Body of God It is my argument that, rather than dismissing the experience of disability as part of the uninteresting randomness of life, we ought instead to reflect upon what the existence of disability, as well as the experiences of individuals with disabilities, can show us about our theological claims and formulations. Disability (as well as nondisability) may be part of the randomness of life, but failing to recognize and reflect on difference as an important aspect of the metaphor of the body of God leaves us theologically impoverished. Ignoring disability not only hinders our possibilities for reflecting on the fact that the full range of human embodiedness includes experiences of disability; it also causes us to fail to reflect appropriately on the real lived experiences of nondisability. This failure leads us to uncritically accept an assumption that most of us are normal, that disability and other related experiences are abnormal, and that normal perspectives are central and have theological priority. When McFague or others talk about embodiment, then, we are pushed to think more specifically about the epistemological and ontological implications of theological reflection from particular bodies, recognizing that we are not all the same, but neither are we completely different from one another. Awareness of the theological relevance of experiences of disability can work to strengthen McFagues own approach. It continues her work of expanding our resources for theological reflection and responsibility: in addition to paying attention to what the nonhuman world has to teach us about God and community, it increases our possibilities for reflection on actual human experience. If we learn about God through our bodies, we will
learn more about God when we listen to what is known from the variety of types and forms of human bodies. This offers the theological community access to previously overlooked and 70 underappreciated perspectives and experiences, attention to which, according to McFagues model, acts to increase our resources for knowledge of God. For example, we might ask why some human limits are accepted or accommodated by society while others are notquestions that can help identify exclusionary practices leading to situations of alienation. Questions raised by this perspective are consistent with McFagues reading of salvation as a situation where every being has its appropriate place. Attention to the diversity of human embodiment makes McFagues model of the world as the body of God into one that is more authentic to her overall purpose as well as more relevant to the particular experiences of people with disabilities. McFagues model holds within it key foundations for a Christian theology that draws upon understandings of disability. It is appealing insofar as it takes bodies as central and gives us a valuable framework for taking seriously the claim that disabled bodies are a part of creation. It includes concerns for access (space and place) and for interdependence (through the common creation stories), and allows embodied experience to inform our notions of God (the world as the body of God). McFagues model consciously avoids many of the difficulties of the traditional power/control notions of God, which have often been damaging for people with disabilities, suggesting what she calls a decentering and recentering: We are decentered as the only subjects of the king and recentered as those responsible for both knowing the common creation story and helping it to flourish.[ 77 ] Putting McFagues work in conversation with disability, this chapter will conclude with a discussion of disability as a source for such recentered theological construction and will suggest some of the questions, issues, and constructions relevant to such a task. Key to McFagues anthropology is her discussion of sin, which she defines as the refusal to accept our place, particularly our unwillingness to stay in our place, to accept our proper limits so that other individuals of our species as well as other species can also have needed space.[ 78 ] For her, neither sin nor salvation is an otherworldly matter. Given the model of the world as the body of God, sin against material bodies (people, animals, nature) is sin against God.[ 79 ] She identifies three forms of sinfulness based on this model. The first she labels Us versus Us: living a lie in relation to other human beings. She suggests that this form of sin is rather obvious and is epitomized in the disparity between billionaires and the homeless. Quite simply, it means living contrary to reality, pretending that all the space or the best space belongs to some so that they can live in lavish comfort and affluence, while others are denied even the barest necessities for physical existence.[ 80 ] The second form of sinfulness is one she labels Us versus Them: living a lie in relation to other animals. According to this form, we as humans forget the interrelationship and interdependence of 71 all living things, as well as the distinctive individuality and differences between creatures.[ 81 ] The third form of sinfulness, according to McFague, is Us versus It: living a lie in relation to nature. She describes this form as a lack of awareness of both our responsibility for nature and our profound and complex unity with it that is the heart of the appropriate, indeed necessary, sensibility that we need to develop.[ 82 ] Reflection on disability clearly resonates with the first lie or form of sinfulness, Us versus Us, especially for people with disabilities who are denied agency and experience economic oppression.[ 83 ] I propose that the combination of disability and McFagues model also suggests a fourth lie or form of sin, which might be termed Me versus Myself: living a lie in relation to oneself. This lie recognizes that we tend to hold inaccurate selfrepresentations, especially insofar as we deny or depreciate our own limits. This is closely related to traditional notions of sin that would have been familiar to McFague, including the proposal by Reinhold Niebuhr and others that sin is either thinking too highly of ourselves (pride, ignoring our own limits) or too lowly of ourselves (sensuality, defining ourselves solely based on our limits).[ 84 ] Lying about limits allows us to
construct the categories of we and they, of able and disabled. This lie conditions us to believe that wearing glasses is normal but using a hearing aid is not (unless one is old), convinces us that it is a disability not to walk but normal not to fly, and highlights adaptive technology for the disabled while blinding us (pun intended) to technological aids that are designed to adapt to other situations (e.g., a spacesuit, which may be the ultimate prosthesis). The lie that comes from a rejection of our own limits may at first be one of perception, but, just as McFague argues with the other lies, it eventually leads to the perpetration of injustices that cause harm to self and other beings and that impact the health and even survival of the body of God. This lie directly contributes to both physical and emotional self-harm, as research on eating disorders, for example, clearly demonstrates.[ 85 ] It also causes harm to others, through the construction of the illusory categories of we versus they. In addition, this lie contributes to mind-body dualism, placing us at the top of the imaginary intellectual ladder, a position that McFague notes is responsible for many other injustices of space and place that follow. Awareness of this fourth lie and recognition that limits are a natural and inherent part of humanity could have extended the scope and impact of McFagues project. Reflection on disability supports McFagues notions of space and place, especially within the purview of the social or minority model, which is especially concerned with issues of injustice (or, following McFague, appropriately shared space) for people with disabilities. Questions of access are particularly relevant within McFagues concerns about space, which can in turn 72 highlight the issue of whether and under what conditions people with disabilities are allowed to enter and participate in public spaces. The lens of disability also supports McFagues claim that this world is our place, and that we ought not appeal to otherworldly salvation or images of a detached and solely transcendent God appeals that have been particularly harmful to people with disabilities. As a whole, McFagues concern with embodiment as a starting place for theology is very much in line with what we might seek when we look at humanity through the lens of disability or limits. However, as McFague herself argues at the beginning of Super, Natural Christians, People only look alike when you cannot be bothered to look at them closely.[ 86 ] Perhaps because of her overarching commitment to ecological justice, McFague fails in her project to look closely at diverse people or to consider human embodied differences as a significant datum for theological reflection. Attending to these differences could have contributed important theoretical complexity to McFagues model. Instead, she seems to rely primarily on understandings of humanity gained from the scientific worldview (which, as critics of the medical model note, is itself a value-laden perspective). Especially insofar as McFague is interested in a discussion of human responsibility, including space and place, it is problematic that her model neither is based on the analysis of diverse bodies nor sends us back to diverse bodies at the outcome of her analysis. McFagues model of God is especially appropriate as a foundation for a theology of disability because it includes consideration of bodies, emphasizes relationality, demands subject-subject interactions, is panentheistic, understands notions of God to be metaphorical, and offers itself as only (but importantly) one square in the quilt. In addition to McFagues concern with bodies, we also see in her work a demand for the recognition of interdependence: we all matter and are connected through the common creation story. McFague is also clear that her proposal is metaphorical, which reminds us that God is not just this one thing that we say, and allows an openness to other models and metaphors. A metaphorical understanding acknowledges that there is a diversity of experiences and interpretations that can be offered by people of various physical and intellectual states, and allows for some of the metaphors of God that will be presented in the next chapter. Additionally, a metaphorical understanding seems especially appropriate as we attempt to capture the diversity that is represented in human embodiment. Our multiple bodies suggest that it might be appropriate to consider multiple avenues toward reflection on God or matters of ultimate concern. Metaphors offer us a significant way to reflect upon the full diversity of individual situations and responses to experiences of limits, and so a metaphorical approach may well be the most promising method for engagement between disability and
theological reflection. 73 McFagues model for God begins with a concern for bodies, including all of the different, particular, peculiar bodies around us. It connects with both religion and science not only as sources of legitimacy but as productive conversation partners that keep us open to new ideas and proposals that might emerge. The image of the world as the body of God is not meant for universal application, but it has a wide range of relevance, and not just for use by people with one bodily experience or with one political concern. Given these attributes, I suggest that, while it is valuable for disability studies to imagine God freely and creatively, there is also benefit to be gained from dialogue with models such as McFagues that are currently being explored within the discipline of theology. In particular, it is my claim that ongoing conversation between existing theological models and those who reflect on experiences of disability is productive and can be mutually beneficial, strengthening and offering new possibilities for both. McFague is one clear example of a helpful model of God that allows (and even embraces) the human experience of diverse embodiment. Her model shows us one constructive possibility for disability and Christian theology, beginning with the medical models observation that bodies are diverse, are fluid, and differ in ability. Our next chapter will explore a second option: Drawing upon the commitments of the minority model, how might we imagine a liberation theology of disability? This chapter explores some of the justice concerns raised by attention to disability, and demonstrates parallels between this lens and the commitments of various liberation theologies. It explores barriers of architecture and attitude that limit access to religious participation by people with disabilities. It argues that it is essential that we look not only at institutional and individual discrimination, but also at the religious values, ideas, and images that permeate societal webs of meaning. Three existing proposals for a liberation theology of disability are described: the Accessible God, proposed by Jennie Weiss Block; the Interdependent God, proposed by Kathy Black; and the Disabled God, proposed by Nancy Eiesland. As with other liberation theologies, they each propose a preferential option for the marginalized, imaging God in ways that show God's commitments to access, inclusion, and justice. liberation theology discrimination justice inclusion values accessible God interdependent God disabled God Jennie Weiss Block Kathy Black
model, has often fallen primarily within the realm of pastoral care (how do we take care of people with disabilities, support their families, and address issues of suffering and healing) and, for the most part, has been neglected in theological reflection and within the daily life of religious communities. When church members are asked about disability issues in their 76 congregation, most will respond with a discussion of ways they have learned to respond to individual impairments, usually through changes in architecture or assistive technology. Ramps, elevators, sound systems, and the phrase please stand as you are able are seen as fulfilling church obligations to people with disabilities. Disability activists observe that today most denominations and many local congregations realize that church facilities should be constructed or altered to encourage the presence of persons with disabilities. Yet little effort has been made to promote the full participation of people with disabilities in the life of the church.[ 3 ] The history of Christianitys practice in relation to people with disabilities is at best an ambiguous one. While advances have been made, it is important to recognize that in many Christian denominations discrimination against people with disabilities is not infrequent. Because religious organizations successfully lobbied for exemption from the Americans with Disabilities Act (ADA), churches are still responding on a caseby-case basis to accessibility requests.[ 4 ] This means that accommodations that have become standard in other places (stores, banks, schools, etc.) are still lacking in many churches. Religious organizations are simply out of step[ 5 ] with other organizations, leading some to observe that access for people with disabilities has become for churches a matter of benevolence and goodwill, rather than a prerequisite for equality and the foundation on which the church as a model of justice must rest.[ 6 ] Rather than being a structure for empowerment, religious organizations have more often supported the societal structures and attitudes that have treated people with disabilities as objects of pity and paternalism. Relations between disability activists and religious groups became strained during the ADA lobbying process and have scarcely improved in subsequent years. This leads Eiesland and others to note that for many disabled persons the church has been a city on a hillphysically inaccessible and socially inhospitable.[ 7 ] These barriers of attitudes towards welcoming acceptancewhether real or perceivedmay prove to be greater obstacles than staircases ever were. Another barrier appears as people with disabilities seek access to the pulpit. People with disabilities are often discouraged from seeking ordained ministry or pursuing advanced theological education. Many seminaries contain barriers of architecture and attitude similar to those found in churches; overcoming these barriers is not just a matter of having a ramp to the front entrance but of being fully and multiply hospitable to the experience of a disabled student. The ordination of persons with disability has also been fraught with challenges from a variety of directions. Biblically and ecclesiastically, religious organizations have challenged the right of persons with disabilities to seek ordination. Leviticus 21:1820, barring anyone blind or lame, or one who has a mutilated face or a limb too long, or one who has a broken foot or a broken hand, or a 77 hunchback, or a dwarf, or a man with a blemish in his sight, has been used to justify exclusion of people with physical disabilities from ordained ministry.[ 8 ] Today, in place of overt prohibition, many denominational officers subtly question the practicality of ordained ministry for people with disabilities. They emphasize such issues as challenges in fulfilling pastoral duties, problems in finding appropriate placement, and congregational acceptance. While the number of ordained persons with disabilities is slowly rising, the number of ministers, priests, rabbis, and employees of religious institutions who have disabilities remains small.[ 9 ] Additionally, students with disabilities who do have the opportunity for theological education often have been steered away from reflection on disability and encouraged to engage in serious scholarship rather than personal concerns. [ 10 ] This exclusion from theological reflection is yet another example of discrimination against those who are differently abled, one that simultaneously limits the churchs own resources for leadership and theological construction around issues of disability.
It is interesting to note that there are few, if any, congregations that do not include members with a variety of overt and hidden disabilities. In pragmatic terms, anyone who is preparing to be a teacher, preacher, pastor, or counselor in congregations today needs to understand and be sensitive to the experience of persons with disabilities.[ 11 ] Beyond this, understanding more deeply the experience of a person with a disability not only helps sensitize a ministerparticularly one who is relatively able-bodiedto the experiences of a significant number of people in any given community but also can provide her or him with a new perspective on what it means to be a human being and a child of God. Yet instead of drawing upon the gifts of diversity, churches have allowed barriers to access, participation, and leadership to remain, thus treating people with disabilities, to use Harold Wilkes term, as sickened-class citizens.[ 12 ] Christian churches have failed to engage honestly with people who have disabilities, to seek out and listen to their stories, and instead tend only to speak to or about them or do things for them. If they are not ignored altogether, people with disabilities have been talked to or about by religious organizations, but not included as key partners in the conversations. This negligence is also found in theology. Without ignoring or minimizing the significant emphasis that has been placed on the inclusion of people with disabilities in recent years, scholars note that with few exceptions, the theological community is unaware of the radical new vision of disability emerging in this country.[ 13 ] Lacking an awareness of anything other than the medical model and physical issues of accessibility, theology has failed, for the most part, to engage the emerging field of disability studies either as a topic for examination or as a partner in conversation and theological reflection.[ 14 ] 78 Similarly, the field of disability studies has paid scarce attention to religion and has been largely silent on the issue of God. A review of anthologies, introductory texts, and works on methodology shows little, if any, mention of God. A superlative example of this is seen in the Handbook of Disability Studies, a landmark work that was designed to organize and formalize the emerging field of disability studies and to draw together the best and most current thinking in the field, the major works and intellectual forces that define the field, the critical issues and problems that persist in the field.[ 15 ] In the introduction to this work, the editors state, While one book cannot include every theory and perspective, a serious attempt was made to reflect the diversity and depth of disability studies in this volume.[ 16 ] Given this claim, it is surprising that, in the more than 700 pages that follow, religion is barely mentioned and then only in relation to the institutional history of disability. There is no discussion, even in footnotes, about disability within the disciplines of theology or religious studies, or of any contributions these fields might make to disability studies. This is especially notable insofar as almost all other traditional academic disciplines are represented at some point in the work. Also lacking is any mention of how people with disabilities are present in or absent from religious institutions, which is surprising, since the volume surveys a wide spectrum of other institutional and communal aspects of disabled life. Religion is examined only as a historical influence, with no attention (in this text and most others) to contemporary religious issues or communities, no mention of God, and no consideration that theological reflection might have a contribution to make as one of the intellectual forces that define the field of disability studies. The silence of disability studies on religion in general is problematic on a number of levels. Given the dominant Christian environment within which the movement operates in the United States, this failure ignores a significant facet of the lives of many people with disabilities. Nancy Eiesland describes the failure of disability studies to address religion in this way: For a long time, I experienced a significant rift between my activism and my faith. My activism filled me with a passion for social change that would acknowledge our full value as human beings. But my theological and spiritual questions remained unanswered: What is the meaning of my disability? The movement offered me opportunities to work for change that were unavailable in the church, but my faith gave a spiritual fulfillment
that I could not find in the movement.[ 17 ] The silence of disability studies on issues of religious significance distances the field from the real-life values and commitments of many people with disabilities, 79 ignoring that God may have meaning (whether positive, negative, or ambiguous) in the lives of many people with disabilities. By failing to address issues of significance in the lives of the people it speaks for and with, disability studies falls short of its own commitments to inclusivity and relevance. Additionally, it is my argument that this silence has problematic implications for the stability of the field itself. This chapter will argue that it is important for disability studies to attend to images of God for two crucial reasons. First, given the nature of religious belief, destructive notions of God will most likely persist if left unchallenged and will have the potential to sabotage the progress of other aspects of the disability movement. Second, with appropriate reconstruction, alternative images of God have the potential to make significant contributions to ongoing processes of resymbolization and reinterpretation of the experience(s) of disability, an undertaking that is vital for the future of the field. It is important to note that religion, particularly Christianity, has frequently been cited as a source of destructive stereotypes about people with disabilities. Traditional understandings of God validate detrimental explanations for and analyses of disability. Models of omnipotence support images of dis-ability, and models that fail to challenge such assumptions implicitly perpetuate them. In particular, the traditional image of God as the allpowerful Father enables interpretations of people with disabilities as childlike and lacking agency, allowing for a variety of stereotypic interpretations of disability.[ 18 ] Ignoring these images does not make them go away. Thus, when we examine the interaction of religion and disability, it is essential that we look not only at institutional and individual discrimination but also at the religious values, ideas, and images that permeate our webs of meaning. Disability scholars ought to be concerned with religion not just because churches are or can be oppressive institutions but also because personal and societal understandings of disability are saturated with meaning, including religious meaning. As Naomi Goldberg notes, Images of God dictate who will feel worthy in society and who will feel inferior, who will be respected and who will be despised, who will get easy access to the literal material goods of culture and who will have to fight for those same goods.[ 19 ] Traditional anthropomorphic images of God make God look more like the able-bodied than like the disabled, which puts people with disabilities on the inferior and despised side of Goldbergs balance. Traditional images of God may, for some people with disabilities, be the best way of capturing the relationship between God and disability. Experiences of disability cross all religious, political, cultural, and regional linesthere is no single or typical reaction to the experience of disability, which, combined with other identity factors, means that there will be no single image of God that is relevant or appropriate for all people (or even all Christians) with disabilities. 80 Some will reject God outright, and others will find meaning in traditional images. However, it is the argument of many people with disabilities, especially those who have rejected the medical model of disability, that traditional and contemporary images of God are biased toward able-bodiedness and perfection, thus reinforcing negative stereotypes toward people with disabilities. For example, John Hull suggests that we think of God as being above average: The human image of God is usually thought of as the image of the perfectly normal human, but raised to an even higher level of perfection.[ 20 ] These images act to deny or dismiss the agency of people with disabilities, insofar as the nondisabled are more like God, and leave traditional (negative) definitions and expectations of disability unchallenged. These images also fail to embrace the fluidity and diversity of individual experiences of ability and disability, leaving us theologically impoverished.
Traditional models offer very little space for a positive valuation of disability, and therefore leave few theological resources for those who embrace disability as a natural part of life. As was argued earlier, concerns with justice demand that traditional models be challenged, especially in terms of the implications these models have in the real lives of people with disabilities. There must be more as well: we need theological resources that allow us to reflect upon the full diversity of human embodiment. Eiesland suggests the following as our starting point: The challenge for people of faith is first to acknowledge our complicity with the inhumane views and treatment of people with disabilities, and second, to uncover the hidden, affirming resources in the tradition and make them available for contemporary reflection, finding new models of the church in which full participation is a sign of Gods presence.[ 21 ] As we look at meaningful images of God for people with disabilities, we need to consider immediate concerns with justice, as well as models that will be meaningful for the long haul, both for people who are defined as disabled and for all of us in our own experiences of limits. What God for Disability? As noted earlier, disability studies as a whole has paid little attention to religion at all, let alone to images of God. Even for those specifically interested in religion, the emphasis has been limited to questions of access for people with disabilities, particularly with regard to worship, theological education, and ordination.[ 22 ] Very little consideration has been paid to reflection on disability as it impacts theological notions. Yet current theological options seem to be inadequate for many, if not most, people with disabilities. While some work has 81 been done to highlight images that are exclusive or oppressive to people with disabilities, very little has been written about images of God that might fit with or grow out of reflection on disability. To date, only three proposals stand out within the literature of disability and religion: the Accessible God, proposed by Jennie Weiss Block; the Interdependent God, proposed by Kathy Black; and the Disabled God, proposed by Nancy Eiesland. The Accessible God Jennie Weiss Block is a disability professional with an interest in theological metaphors for disability. She does not identify herself as a person with a disability but rather calls herself a secondary consumer, a phrase commonly used to indicate a person who has a family member with a disability. In the book Copious Hosting, she proposes what she calls a theology of access, the goal of which is to ensure that people with disabilities take their rightful place within the Christian community.[ 23 ] This theology draws on principles from her experiences as a caregiver and advocate for people with disabilities and is specifically grounded in her belief that people with disabilities are a unique group not because they are in any way inferior to nondisabled people but rather because they are oppressed by society. She merges these principles with her own religious commitments, especially her belief that Christian communities have an obligation to challenge oppressive structures. Based on these ideas, she calls for church communities to make changes that lead to full access and inclusion for people with disabilities. Block sees the lens of access and inclusion as a useful one through which to examine images of God. What does disability tell us about God? For Block, the answer is that disability is related to the mystery of Gods love and the great paradoxes of the Christian message.[ 24 ] In particular, from her Roman Catholic background, she writes, Disability is a dramatic reminder that Gods ways are not our ways.[ 25 ] While God cannot be fully known, she argues that the lens of disability highlights a God who is unfailingly committed to inclusion and access. She argues that the mandate for access and inclusion is biblically based, central to our baptismal promise and commitment, and rooted in the Triune God.[ 26 ] This, she says, was the message of Jesus: all are welcome, and all have a place. According to Block, the New Testament account shows that Jesus included all people in his ministry, regardless of nationality, gender, background, or physical condition. For her, these
stories of Jesus tell us what God is like, and what we are to be like as well. Why a theology of access? Because the gospel of Jesus Christ is a gospel of access; creating access for those on the margins is a Christian mandate.[ 27 ] 82 Blocks proposal is based on a social/minority group definition of disability, which highlights disability as an issue of oppressive structures and exclusion. Because of this, the Accessible God not only offers us images of inclusion but also calls for an end to oppressive structures. Block explains that this image demands we search our community with truth and face the serious reality that some of the people of God have been systematically denied access to the community [and] demands that we admit that our own attitudes and actions have excluded people. It forces us to ask difficult questions. How can we become more inclusive? What actions do we need to take? What skills do we need? How must we change to make this gospel demand a reality in our communities? Becoming inclusive is a complex, demanding task that asks more of us than we are probably willing to give. It requires the traits of patience and vigilance that are in short supply in our fast-paced, outcome-oriented world. And yet, we cannot be faithful to our Christian vocation if we are not serious about the Christian mandate for inclusion.[ 28 ] Based on her experiences as a disability professional and secondary consumer, Block argues that a theology of access demands the participation of people with disabilities in decisions that affect their lives. This is the emphasis of her work and the practical goal of her theological reflections. To highlight this point, she tells of a chapel that underwent extensive remodeling to become accessible to people with disabilities. In the process, however, the architects failed to consult anyone who actually uses a wheelchair. As a result, some arbitrary decisions were made that rendered the project inadequate to the needs of wheelchair usersthe front door was not wide enough, the carpet was difficult to roll across, and not enough space was left for a wheelchair to turn into the accessible pew.[ 29 ] She uses this story to suggest that it is not only a practical error to exclude people with disabilities from decisions that concern them but also a theological error. Those involved in making decisions about the remodeling were not following the gospel mandate of inclusion and were not acting in a way that is consistent with the image of the Accessible God. Thus Block is concerned not only with the image of God itself but also with the actions and responsibilities that such an image demands. Her theological reflection on the experiences of people with disabilitiesand of those who care for and with themleads her to a liberation theology that demands that God be on the side of justice, on the side of access. God favors accessibility over exclusion and thus calls for the church to be a site of access and justice. If we are to be like God, if we are to be in community with God, we too must join the struggle for access and inclusion with regard to all of Gods people. 83 The Interdependent God Kathy Black is a professor of homiletics who identifies herself as a person with a physical disability and who has worked for many years in Deaf ministry. Her interest is in the intersection of Deafness and homiletics, based on her experiences of the Word made flesh as a hearing person who preaches and teaches in sign language.[ 30 ] In A Healing Homiletic, she proposes what she calls a theology of interdependence that emphasizes her understanding of Christian community as a place where all are called to work interdependently with God to achieve well-being for ourselves and others.[ 31 ] She begins with the idea that disability is a part of the everyday existence of millions of people and their loved ones. Her interest is in examining what significance this might have for theology if one rejects the notion that God causes disability. Her guiding question is What
can we as communities of faith believe that reconciles the reality of disability with our faith in a loving, compassionate God?[ 32 ] Black begins with the demand that we reexamine our images of God, specifically the notion that God is allpowerful. She rejects the idea of God as the great puppeteer, one who determines (or at least purposefully allows) both natural disasters and personal crises. She suggests that this conception would place God in the position of being responsible for nuclear accidents, wars, rape, the hole in the ozone layer, homelessness, famine, toxic waste dumps, and earthquakes, as well as disability, consequences she finds unacceptable.[ 33 ] She argues that God is not a great puppeteer, but rather that human choice is one among many factors that determine our lives. Noting, for example, that causes for disability include genetic and environmental influence, she argues that we are all interconnected and interdependent upon one another so that what we do affects the lives of others and the earth itself.[ 34 ] For Black, the stories of Jesus, especially the story of the resurrection, emphasize this connection. God is present in the midst of life and in the midst of suffering, offering possibilities for transformation. She argues that the universe is interdependent, and God is a part of this interdependence.[ 35 ] Thus she takes phrases such as the family of God, communion of the saints, and Body of Christ to directly represent people who are interdependent with one another and with God, not only in times of crisis but also in daily life. For Black, interdependence is a theological contribution that comes from the lens of disability. She suggests that most people with disabilities have an enhanced awareness that they are dependent upon someone or something, whether a sign language interpreter, a Seeing Eye dog, or a wheelchair. People with disabilities are conscious of such dependence, which in turn allows them to recognize that no one is totally independent. The experience of disability 84 allows them to see what is sometimes invisible to others: all people, disabled or not, are dependent on other people and on the resources of the natural world for survival. She notes that this is a difficult awareness within the context of American culture, which values independence and sees dependence as something to be avoided. In the midst of this cultural context, Black sees Christian communities as one place where people can be accepted for who they are as children of God, the place where dependency is acknowledged and interdependency is valued. It is this interdependency in the midst of a culture that highly values independence that sets us apart.[ 36 ] Disability is a window into this insight. However, the Interdependent God is not only of or for people with disabilities, but rather is inclusive of and interdependent with all. Black summarizes her position with this faith statement: I do not believe that my disability or anyone elses is the will of God. I do, however, strongly believe that Gods presence infuses our lives with strength and grace and love to manage whatever struggles come our way. God wills the well-being of each one of us at every moment of our lives.[ 37 ] Black notes that this well-being may be differently understood by each person, a lesson she has learned from Deaf Culture (where well-being is interpreted to include the condition of deafness). She also stresses that God is interdependent with us: God depends on us to be Gods agents of healing in the world as much as we depend on God to undergird us with everlasting love and care.[ 38 ] She relates the following story to explain: A little girl was late getting home from school. Her mother became more and more worried as the afternoon wore on. When she finally arrived, the mother said, Where have you been? Ive been worried sick! The little girl responded, Well, I was almost home, but then I saw Suzie sitting on the curb crying. Her dolly was broken. The mother, relieved, said, Oh, so you stopped to help her fix her dolly? The little girl with the wisdom of the universe said, No. I sat down on the curb, and I helped Suzie cry.[ 39 ] God is not the puppeteer, but instead whenever we struggle in life, God sits beside us and helps us cry.[ 40 ]
Perhaps when God struggles we are to cry as well. This image of God grows not from perspectives of privilege and power but rather from the lens of oppression and limitation. Yet this image, growing out of commitments to liberation, is not simply of or for the disabled. Black suggests that this image of the Interdependent God teaches all of us to be present with each other, acknowledging interconnection and valuing community, recognizing that we all depend on each other for life. 85 The Disabled God The most powerful discussion of God to arise from within disability studies comes from Nancy Eieslands proposal of the Disabled God, in the book by the same title.[ 41 ] Eiesland identifies herself as a woman with disabilities, a sociologist of religion, and a professor at a seminary in the United States.[ 42 ] These three elements come together in her theology, which centers on what she calls the mixed blessing of the body, especially related to the lived experience of disability. From her sociological perspective, she is especially interested in theories and methods that empower and provide a foundation for political action. She uses the image of the Disabled God to support such political action, particularly through processes of resymbolization. She is also interested in deconstructing notions of normalcy. She writes, My own body composed as it is of metal and plastic, as well as bone and flesh, is my starting point for talking about bones and braces bodies as a norm of embodiment.[ 43 ] Her proposal is a model of God that makes sense of her normal experience of embodiment, as well as one that supports and participates in the struggle for liberation of people with disabilities. Eiesland argues that traditional images of God, especially those that lead to views of disability as either blessing or curse, are inadequate. Within the course of her own experience, she wondered whether such a God could even understand disability, let alone be meaningful to her. While working at a rehabilitation hospital, she asked the residents one day what they thought. After a long silence, a young African-American man said, If God was in a sip-puff, maybe He would understand. I was overwhelmed by this image: God in a sip-puff wheelchair, the kind used by many quadriplegics that enables them to maneuver the chair by blowing and sucking on a straw-like device. Not an omnipotent, self-sufficient God, but neither a pitiable, suffering servant. This was an image of God as a survivor, as one of those whom society would label not feasible, unemployable, with questionable quality of life.[ 44 ] Eiesland made a connection between this image and the resurrection story in which Jesus appears to his followers and reveals his injured hands and feet (Luke 24: 3639). She notes, This wasnt exactly God in a sippuff, but here was the resurrected Christ making good on the promise that God would be with us, embodied, as we aredisabled and divine. In this passage, I recognized a part of my hidden history as a Christian.[ 45 ] Eiesland suggests that Jesus reveals the Disabled God and shows that divinity (as well as humanity) is fully compatible with experiences of disability. The imago Dei includes pierced hands and 86 feet and side. According to Eiesland, this Disabled God is part of the hidden history of Christianity, because seldom is the resurrected Christ recognized as a deity whose hands, feet, and side bear the marks of profound physical impairment. In the foreward to Eieslands text, Rebecca Chopp notes, The most astonishing fact is, of course, that Christians do not have an able-bodied God as their primal image. Rather, the Disabled God promising grace through a broken body is at the center of piety, prayer, practice, and mission.[ 46 ] Like Block, Eiesland relies on the social/minority group model of disability, so that the relevance of the Disabled God is grounded in Gods ability to be in solidarity with those who are oppressed. According to Eiesland, this image leads to a deliberate recognition of the lived experiences of persons with disability, a critical analysis of a social theory of disability and of certain aspects of the churchs institutional practices and
Christian theology, and the proclamation of emancipatory transformation.[ 47 ] It is interesting to note that, unlike Black, who sees the Interdependent God as being for all people, Eiesland sees the Disabled God as being primarily for people with disabilities. She writes: The truth of these theological statements is in their ability to transform reality, not necessarily for all people at all times, but for particular people in particular situations of oppression and pain. The truth of this liberatory theology of disability is in its ability to enable transformation for people with disabilities within the church and in its adaptability to addressing our ever-emerging challenges and opportunities.[ 48 ] For Eiesland, the image of the Disabled God makes it possible to bear an unconventional body. The image also opens the door to the theological task of rethinking Christian symbols, metaphors, rituals, and doctrines so as to make them accessible to people with disabilities. Eieslands liberatory theology of disability comes from the perspective of people with disabilities and addresses people with disabilities as its central concern. She argues that this is essential not only for reasons of justice and inclusion but also because she believes that people with disabilities are most aware of their bodies and thus best suited to reflect theologically on issues of embodiment. She suggests that the corporeal is for people with disabilities the most real that is, we become keenly aware that our physical selves determine our perceptions of the social and physical world. These perceptions, like our bodies, are often nonconforming and disclose new categories and models of thinking and being.[ 49 ] For Eiesland, people who have experienced disability have an epistemological advantage: they see things that are invisible to others. As a result, any theology of disability must be done not only for, but also by, people with disabilities. Based on her concerns with justice, Eieslands image of God has specific characteristics. First, the Disabled God rejects the notion that disability is in any way a consequence of individual sin. She sees the scars of Jesus as verifying 87 this claim: Jesus did not sin, yet he became disabled.[ 50 ] She argues that injustice against persons with disabilities is surely sin; our bodies, however, are not artifacts of sin, original or otherwise.[ 51 ] The invitation to touch Jesus hands and side also shows that taboos against disability are to be rejected, as well as that shallow expressions of sympathy and pity are inappropriate. The Disabled God provides an impetus for transformation and liberation in the lives of people with disabilities, just as the resurrection of Jesus provides an impetus for transformation and liberation in the world. The stories of the crucifixion and resurrection also lead Eiesland to reject the notion that God has absolute power; she argues instead that God is in solidarity with people with disabilities and others who are oppressed. This is a God who has experienced and understands pain and rejection. Eiesland suggests that the Disabled God emphasizes relationality over hierarchy, values embodiment in all its diversity, and provides a profound example of inclusion, love, and acceptance. As Eiesland summarizes: A liberatory theology sustains our difficult but ordinary lives, empowers and collaborates with individuals and groups of people with disabilities who struggle for justice in concrete situations, creates new ways of resisting the theological symbols that exclude and devalue us, and reclaims our hidden history in the presence of God on earth.[ 52 ] Building beyond these Models The models presented by Block, Black, and Eiesland offer powerful alternatives to many traditional images of God. Each demonstrates that the idea of God is not incompatible with disability and, moreover, that God is for or on the side of people with disabilities. Each of the three models also claims that disability (as well as other human experiences) offers insight into Gods nature. In the tradition of other liberation theologies, the three models presented here emphasize Gods identification with people with disabilities, introducing both liberatory demands and claims about the intrinsic value of people with disabilities. The image of the Disabled God, in particular, has had a profound impact on many people with disabilities (e.g., almost every text or article on religion and disability published after Eieslands book in 1994 includes a reference to the Disabled God). These are powerful metaphors, images that are meaningful and make sense for many people, and perspectives that
highlight new possibilities for constructive theology. In addition, all three of these models deny notions that the religious practices of the able-bodied are the only relevant perspectives, and instead offer new opportunities for self-understanding and religious practice for and by people with disabilities. As Eiesland notes, New religious images, 88 values, and ideas about disability are essential as we seek to live our ordinary lives. Without them the barriers that people with disabilities encounter, while they may occasionally be lowered, will never be demolished.[ 53 ] The models of the Accessible, Interdependent, and Disabled God offer novel and valuable perspectives on theology and disability. However, one must ask, do they go far enough? It is interesting to note that none of the three models described here are presented by theologians. Block is a disability professional, Black is a homiletician, and Eiesland is a sociologist. As Eiesland writes, I did my graduate work in sociology but Im a theologian by necessity.[ 54 ] Theologians have been largely absent from discussions of images of God that are relevant to the experience of disability. Unfortunately, that absence, as well as the simple fact that these discussions about disability and religion are still in their infancy, leads to a number of shortcomings. A central concern is that all three models lack sophistication about the nature and status of theological claims. These proposals stand outside the current debates about method and theological construction in which McFague, for example, has played a central role. Given that these three proposals are not meant to be complete theological proposals, my central interest is in the scope of the metaphors themselves, and this is where I will concentrate my analysis. The image of the Accessible God, while powerful as an advocate on the side of those seeking inclusion and justice, is of questionable value once ramps are added and other barriers of architecture and attitude are removed. This is similar to many of the claims of the minority/social model of disability, where meaning is inherently tied to situations of oppression. Once such injustices are remedied, whether across the board or just in particular situations, the minority model has little remaining to say. While this may be relatively unproblematic for a political movement (or, at least, not worth worrying about until such a nondiscriminatory situation arises), it is less appropriate for a theological notion for at least three reasons. First, the image of the Accessible God only offers people with disabilities a sense that God is on their side. There is little in this image of God for them other than a sense of empathy or perhaps righteous indignation. It offers no clear direction in terms of action, devotion, or even imagination. Second, the image of the Accessible God lacks similar depth for religious communities and nondisabled individuals. This image demands justice and inclusion but proposes little else about God or about human life. It is a rather flat image, and as such it is hard to imagine how it might serve as a focal point for worship or community formation. Finally, as mentioned earlier, it is extremely unclear what value this image of God might have within the context of an inclusive situation. As such, not only is the image likely (hopefully) to become irrelevant or unnecessary, but it also offers little that would aid in the construction 89 of an inclusive community aside from the demand that basic needs of access and inclusion be central. The image of the Accessible God is useful insofar as it criticizes inaccessible images and acts as a source of legitimacy or justification for accesswhich in and of itself is a worthy contributionbut the metaphor seems to offer little of value beyond that point. Similarly, Blacks notion of the Interdependent God has not yet been developed to a point at which it would be meaningful beyond its initial image. This model is reminiscent of McFagues worknamely, the recognition that all life is interrelatedbut unlike McFague, Black offers little that would inform notions of person, ecclesiology, ethics, or eschatology. In part, this may be because Black does not develop her model in relation to any other theological issues but instead takes the Interdependent God as an illustration of the power of
community and the importance of recognizing interdependence. It is possible that this image could be more fully developedfor example, she has recently begun to explore interrelationships between interdependence and ritual, including the creation of a ritual for the transition to use of a walker or an attendant.[ 55 ] However, this model allows little space for any of the messiness that often comes with real interdependence and community. Most important, Blacks image does not address issues of power. To propose interdependence without including an analysis of power seems naive, and it weakens the foundation for her model. It is one thing to take the analogy of a Seeing Eye dog and propose from this that Christian communities should recognize and value their interdependence with each other and with God; it is another to look seriously at political, economic, and other relevant factors related to such interdependence. In this example, where is the interdependence for the Seeing Eye dog? What of the organization that trains the dogs, the donors who provide funding, the institutions that decide where the dogs will be assigned? Where is power located in this situation, and, according to the image of the Interdependent God, where ought it be located? Blacks proposal also reminds us of feminist concerns about value placed on (inter)dependence without an adequate analysis of gender roles, another implication that an analysis of power would require. One must ask who among us needs to become interdependent, as well as whether this may serve as a fair and sufficient organizing principle for community or whether other values (such as trustworthiness or responsibility, for example) ought also to be raised. Blacks image of the Interdependent God provides a useful illustration that counters traditional images of God, but it fails to address other significant issues related to community such as power and responsibility. Eieslands notion of the Disabled God, while an incredibly compelling image, also has significant limitations. One is that it leaves no room for individuals who might have an ambivalent or negative relationship with their own 90 disability. Eiesland seems to assume that her audience accepts and embraces their experiences of disability as positive aspects of their identity. This draws significantly on the values of the minority model, which understands disability as an experience of oppression rather than a physical (or cognitive/emotional) situation. For individuals who define their disability in another wayfor example, as a profound limitation of their life activities and choices, or as an experience of pain or sufferingEieslands model would be of little value other than perhaps suggesting that God may have empathy for their condition. Even then, a person who wishes to reject or overcome his or her own disability, or one who actively seeks healing from it, may find very little of value in a God who has a disability. Another area of concern that Eiesland fails to address is that the Disabled God is an anthropomorphic image, and thus carries with it the dangers (as well as benefits) found in many other such models. Eiesland suggests that her model is far superior to other person-centered images of God in that it embodies disability, but it is not clear that this imageany more so than other images of Godwould be relevant to diverse experiences of disability. For example, one could question whether this model could be relevant to the Deaf community, to disability advocates, and to families of people with cognitive disabilities all at the same time. From Eieslands model, we might be led to a plurality of Gods to represent the plurality of disability. It is also not clear, beyond the initial shock that God could be disabled or in a sip-puff wheelchair, what this God means or what relating to this God might necessitate. The picture itself is powerful, but we do not yet see what substance this image might hold beyond the initial revelation of Gods situation of solidarity with disability as described by Eiesland and her discussion partners. Each of the three models presented is limited in scope and audience, and is open to the same critiques applied to any other model of God. Even as the models highlight issues of concern in relation to disability, other issues are overlooked, such as racism, violence, and irresponsible consumption. The images only partially address the wide range of experiences of disability and fail to address how this diversity can be theologically represented. For example, could Eieslands God be cognitively disabled?[ 56 ] Does Blacks commitment to inclusion mean that separatists like some in Deaf Culture are not living in the image of God? Does Blocks notion of the Accessible God have meaning for those who see disability as something other than as it is defined by the minority model? Each of these proposals presents us with a valuable perspective related to experience of
disability, and each serves as a powerful corrective or complement to traditional notions that devalue or ignore experiences of disability altogether. It is easy to see how each of these can make a difference in the lives of people with disabilities and can be meaningful objects of reflection within 91 religious communities. Yet each model is limited, both in terms of representing the wide variety of experiences of people with diverse disabilities and in its ability to be meaningful to temporarily able-bodied people of various identities, backgrounds, commitments, and concerns. In some ways, this nascent literature proposing a liberation theology of disability is reminiscent of early movements and metaphors within other liberation theologies. Block, Black, and Eiesland demonstrate for us that there is a perspective from the underside, and new images of God, church, and other elements of theology that can come from listening to and engaging with people with disabilities and those who share their lives. As with other liberation theologies, they each propose a preferential option for the marginalized, imaging God in ways that show Gods commitments to access, inclusion, and justice. They argue for the liberation of the oppressed and for the central role that theology must have in this process. As with other liberation theologies, these images and commitments can only be the beginning. We await a second generation of disability liberation theologians to add complexity and theoretical rigor to these already powerful images of inclusion and justice.[ 57 ] To describe her struggle with images of God and the need for new images, Eiesland relates the following story: A man was wandering in a deep jungle not knowing where he was. Suddenly, he saw another man approaching him and so he called out, saying, Help me, Im lost. And the fellow who was approaching shook his head and said that he was lost too. But he did have one piece of advice. He gestured back over his shoulder and said, Dont go that way, Ive tried it already. Theologically, people with disabilities have tried most, if not all, of the well-trod theological paths in responding to our queries about the meaning of disability in the world. We have found them mostly treacherous and inaccessible.[ 58 ] Eiesland argues that the existing theological paths are inaccessible, and that people who value the experiences of disability must forge our own paths. Drawing on the insights of the minority model, these early disability liberation theologians have given us images of what the new paths might look like and what commitments and possibilities they might include. We now have two possibilities for disabilitys contribution to theology: we can challenge existing theological models to include awareness of and attention to disability (chapter 3), and we can focus on liberative images drawing from experiences of oppression (chapter 4). In the next chapter, we will turn to the third way of imaging disabilityseeing it as an expression of human limitsto explore the theological possibilities this image might offer. This chapter describes a limits model of theological reflection, attending to the fluidity of human embodiment and most particularly the claim that limits are an unsurprising aspect of being human. By reflecting specifically on Deaf Culture and cognitive disabilities, it explores the theological implications of the limits model for anthropology, reinterpreting limitation as part of what it means to be human rather than as a punishment for sin or an obstacle to be overcome in pursuit of perfection. In particular, the chapter explores the nature of human diversity and suggests a reinterpretation of traditional theological anthropology and images of God. It also suggests that a limits perspective, rather than leading us toward fragmentation or universality, can instead offer a common ground for conversation and can be an important source for theological reflection. limits theology theological anthropology God images of God Deaf Culture cognitive disability difference
Both the medical model and the minority model highlight aspects of disability that are relevant for theological reflection: attention to the diversity of human embodiment (i.e., there are disabled bodies) and attention to justice concerns arising from observations of exclusion and oppression (i.e., the lens of disability offers a unique and valuable perspective). This calls us to attend to embodiment and liberation theologies. Yet as was described in the first chapter, these two perspectives are not our only alternatives as we reflect theologically on experiences of disability. I have proposed that we also consider a limits model, attending to the fluidity of human embodiment and most particularly the claim that limits are an unsurprising aspect of being human. Limits are normal. Rather than acting as a deficit, they lead us toward creativity, and even toward God. In this chapter, we will explore the possibilities of and implications for such a model in constructive theology. I begin with the claim that limits are a common and unsurprising aspect of being human. We may already know this, but it is also something we tend to forget or reject. In common usage, the word limited comes with a particular connotation, signifying a lack or absence and emphasizing what cannot be done. It highlights barriers and constraintsone is limited. I propose an understanding of limits that more positively connotes a quality of being. It emphasizes a characteristic of humanityone has limits. This proposal suggests that limits, rather than being an array of unfortunate alternatives to 94 omnipotence, are an unsurprising characteristic of human nature. As Jeffrey Cohen and Gail Weiss note, Simply put, limits need not foreclose. We are interested in what limits produce, what they make possible, what they incorporate, as well as how the limits are themselves constructed in and through particular cultural matrices which they cannot escape but always exceed.[ 1 ] The term limited is often taken as representing something that is unfortunate and emphasizing that which is not. The term limits, on the other hand, places the emphasis on boundaries. When we reflect on human experiences of limits, we are reminded that boundaries, while often permeable, are also appropriate and necessary (as we see, for example, in psychological literature on differentiation and appropriate boundaries). Using the term limits highlights how each of us has these boundariesnone of us are omnipotent, for examplebut does not carry the negative connotation that come with the alternative, limited. Approaching disability from the starting point of an assumed able-bodied normality leads one to think of limited and what is not. If we begin with a person who can walk and then look at one who uses a wheelchair, what is highlighted is what the person in the wheelchair cannot do. This has been our historically conditioned response to experiences of disability and is seen most clearly under the presuppositions of the medical model, where physical bodies are compared to a medical ideal and diagnosed in terms of what is lacking. However, an alternative perspective is suggested by the limits model. Approaching our understanding of humanity from the starting point of disability gives us a more applicable (or normal, in terms of what is actually seen across the scope of the human population) vision of human limits. Limits may then be compared and considered, but they are not seen as abhorrent or abnormal. The limits model proposes three significant religious claims that are not unfamiliar in the Christian tradition. First is the notion that limits are an unsurprising characteristic of humanity. This is a theme for many of the early Christian writers, who argue that humans are obviously and unsurprisingly different from God and also experience a dependence upon God. Other early writers suggest that humans are not perfect and static but rather experience processes of change and development, as can be seen in historical variations of language, culture, and understandings of the human body. From any of these perspectives, it is not surprising to note that humans have limits. A second and related claim suggests that limits are an intrinsic aspect of human existencepart of what it means to be human. This reminds us of the writings attributed to Paul which illustrate that each member of the community has a different gift and that it takes all of these differences together to create the body of Christ (1 Corinthians 12). Finally, the limits perspective implies that limits are good or, at
95 the very least, not evil. Christians and Jews are reminded of their first creation story, where God saw all that had been created and said that it was good. In contrast to these notions (but also represented by earlier authors), the familiar term limited leads us to a deficit model of anthropology. The focus is on what we lack. We lack certain abilities, and so emphasis begins to settle on one of three questions: Why do we experience these lacks (sin)? When will we overcome these lacks (heaven)? What is the alternative to the experience of limitation (God)? In contrast, the limits model presented here emphasizes the good (or, not evil) created nature of humanity. It explores how limits constitute our selfunderstandings and our relationality with others. It leads to an ethic of how we should act toward others. An example of the deficit model might be seen in Plato, who emphasizes the shadowiness of what we see and the absence of the real and true in the material world. The limits model, which might be termed a gifts model, can instead be seen in the writings attributed to Paul, who emphasizes how various gifts (as well as limitations) fit together to constitute a community. The deficit model, highlighted by the term limited, has served as the primary lens through which we see other anthropological claims. In liberation movements, we see challenges to specific claims of the deficit model, but even these still operate within the overarching lens of limited-ness. For example, we hear slogans proclaiming, Gay is good or Women are strong. These claims, rather than challenging the deficit model as a whole, suggest instead that certain characteristics (gender and orientation) are not deficits as previously noted, but rather strengths or advantages (or are at least equal to their male or heterosexual counterparts). Disability theology could make similar claims, and in fact has done so within the social/minority group model. From this perspective, we hear that the real handicap comes from barriers of attitudes and architecture; the defect is not in the person with a disability but rather in the exclusionary structure of society. This logic does not challenge the deficit model but rather narrowly claims that disability itself is not a deficitit changes which side of the equation we are on without actually challenging the equation. The attempt to normalize or contradict the specific analysis of the experience of disability as a deficit captures much of what has been said to date in disability theology. This response is not adequate for disability theology. Unlike early examples from feminist or gay rights movements, disability is not a category that can be effectively revalued and reinterpreted through the process of comparison to its opposite. On the surface, this is a difficult challenge to grasp, because the disability rights movement has followed and imitated so closely the rhetoric and public policy initiatives of other liberation movements. However, disability is not a binary category. Disability varies from the popular conceptions of 96 other movements in significant ways. To begin, if each of us lives long enough, we will become disabled. The same is not true of participants in other rights movements. In addition, disability is no one thing. At what point does my limp become more than a quirk and earn me the status of someone who is disabled? Even if we accept the relevance of the porous category disabled, the individuals held therein often have much less in common, even in their physical functioning, than they do with individuals who are not identified as disabled. As was mentioned earlier, the limits model highlights the fact that a legally blind (disabled) individual may in some ways be more similar to a person who wears glasses (nondisabled) than to a person who uses a wheelchair (disabled). The signifier disabled attempts to hold a wide variety of bodily experiences, including mobility, sensory, and intellectual differences, in one designated category. As we have seen, this category is tenuous at best. The limits model suggests that the insights that come from disability are something with which we all have experience. We learn the value of curb cuts when we use a stroller and the challenges of brick sidewalks when we use crutches for a sprained ankle. This model also highlights that limits go far beyond those labeled as part of the province of disability, and shows that some limits are viewed as more normal (I cannot fly) than others (I
cannot run). The limits model challenges the deficit model, suggesting that disability is not something that exists solely as a negative experience of limitation but rather that it is an intrinsic, unsurprising, and valuable element of human limit-ness. This chapter will explore the theological implications of the limits model for anthropology, reinterpreting limitation as part of what it means to be human rather than as a punishment for sin or an obstacle to be overcome in pursuit of perfection. In particular, this chapter will explore the nature of human diversity and suggest a reinterpretation both of traditional anthropological understandings and of images of God. It will also suggest that a limits perspective, rather than leading us toward fragmentation or universality, can instead offer a common ground for conversation and become a productive datum for theological reflection. Interpreting Deafness The experiences of the Deaf community were mentioned in chapter 1 as an especially interesting challenge to both the medical and minority models of disability. The signifier Deaf in this usage indicates the culturally Deafthose who use sign language as their primary form of communication and who identify with the Deaf communityas opposed to the noncapitalized word deaf 97 that indicates those who experience a loss of hearing. One can be deaf without being Deaf, and vice versa. Those who identify as Deaf often do not identify themselves as disabled, even though in most cases they are limited in their sensory ability to hear sounds. Instead, they consider themselves part of a linguistic minority. The arguments made by participants in Deaf Culture highlight the constructed and somewhat arbitrary (though still powerful) nature of the category of disabled. As was noted earlier, the concept disabled is inherently related to a societys concept of normal. The category is a discursive construction, with shifting referents and shifting significance, a concept that demonstrates Derridas notion of diffrance, the establishment of meaning through the assertion of difference.[ 2 ] When the Deaf argue that their identity comes from sharing a common language, they challenge any easy assertion of difference. Deaf Cultures rejection of the category of disability is a way both of excluding themselves from a category that may or may not be relevant for others and of challenging the nature of such constructions altogether. Current Deaf alliances with the disabled are rarely based on identity but rather are strategic attempts to work for the achievement of rights for people by countering the essentialist view that people with disabilities are inherently pathological. The primary argument is that the Deaf are not an example of difference in the way we might assumethe difference comes from language, not from defect. Furthermore, as Davis observes, the Deaf see their state of being as defined not medically but rather socially and politically.[ 3 ] If one equates disability with impairment, it would be a Hearing person who cannot sign who would be different and thus disabled within the context of a Deaf community. While the ableist society sees individuals who cannot hear,[ 4 ] the Deaf instead see themselves as a distinct cultural group that uses a different language. This requires a change of perspective from those of us who are not Deaf. In contrast to the long history of writings that treat them as medical cases, or as people with disabilities who compensate for their deafness by using sign language, it is important instead to examine their world through an alternate lens, one that begins from their perspective and includes an examination of language, foundational myths, and communal identity. For the culturally Deaf, their culture, language, and community constitute them as a totally adequate, self-enclosed, and self-defining subnationality within 98 the larger structure of the audist state.[ 5 ] The term audist captures their perspectiveit is a parallel to terms like racist, sexist, and classist and highlights how those who are not members of the Deaf community are
biased toward the auditory mode of communication. The Deaf do not regard their absence of hearing as a disability any more than a Spanish-speaking person would regard his or her inability to speak English as an intrinsic disability (especially within the locus of a Spanish-speaking community). Rather, they see their group as a linguistic community, much the same as Hispanic or Korean subgroups in the United States. Language is especially key to Deaf identity. The primary language spoken by the Deaf in the United States is American Sign Language (ASL). Common misconceptions of ASL suggest that it is either a collection of individual gestures or a code on the hands for spoken English. ASL is not based on the English language but rather has its own syntax, grammar structure, idioms, and vocabulary. It is a complete language in and of itself. It is a manual language in the sense that the hands play an important role as they make the signs, but the eyes, eyebrows, shoulders, mouth, head, and body stance are also contributing factors to the execution of ASL, conveying what we often think of as tone and inflection as well as grammatical markings. It has many complicated features that English does not have and is not considered an easy language to learn. The signed gestures with which many in the Hearing community are familiarwhether through television or developmental services for preverbal childrenare not ASL but rather Pidgin Signed English (PSE), which borrows vocabulary from ASL and grammar from English. With PSE a person can simultaneously use signed gestures and speak (or lip-sync) in English. In actual ASL, the rules for word formation include a complex verb morphology (including inflections for person, subject, and object) that does not resemble English. ASL also has an independent sentence structure. For example, in English it is correct to say either I gave the book to him or I gave him the book, but in ASL only the second structure is possible, with the sign reading I-give-him man book.[ 6 ] Signs often do not capture exact connotations for English words and vice versa. For example, the sign for hearing is commonly used to mean different from us (the Deaf). As a result, signing a little hard of hearing means a little different from us, and very hard of hearing means very different from us, even though an English translation would render very hard of hearing as closer in meaning to deaf.[ 7 ] A basic understanding of the elements of ASL is important because it reminds those of us who are not members of Deaf Culture that ASL is not simply an adaptation or translation of spoken English but a distinctive language with a unique structure. Language, however, is not the only difference between those who are culturally Hearing and those who are culturally Deaf.[ 8 ] Differences can be found based on the value given to speaking ability, use of eye contact, degree of body and facial expression, and concern with individual privacy. It is not uncommon for members of the Hearing culture to introduce themselves by name, but members of Deaf Culture typically introduce themselves by full name, school, and where they grew up. Conversational style often differs, with 99 Deaf conversations usually beginning quite informally, getting to the point quickly, and ending more slowly than one might find in a Hearing conversation. Deaf Culture also values deafness and greater degrees of hearing loss over hearing and lesser degrees of hearing loss, opposing the value scale within Hearing culture. While American Sign Language is the common language for the majority of people within Deaf Culture in the United States, it has interesting geographic and racial differences (similar to accents and dialect in English), and it is not the same as the sign language used by Deaf persons in other countries. In Quebec, for example, Deaf French Canadians use Langue des Signes Qubcoise. Nova Scotia has a community of Deaf people whose sign language is related to British Sign Language but not to ASL. Even within the population of Deaf people who use ASL, there is enormous diversity. Large communities of Deaf people in Boston, Chicago, and Los Angeles, to give a few examples, have their own distinctive identities. Within these larger communities there are smaller groups organized by class, profession, ethnicity, or race, each of which has yet another set of distinct characteristics. Members of Deaf Culture are often not only bilingual between signed and spoken languages but often necessarily fluent in a variety of signed languages as well. Some members of Deaf Culture were born to Deaf parents and acquired signed language during early childhood.
However, 90 percent of deaf children have Hearing parents and therefore are not assimilated into Deaf Culture from birth. Entrance into Deaf Culture for these children is often determined both by their parents choice of communication methods and by their educational placement. Those who are educated in residential deaf schools will learn from other children as well as from Deaf adults who work at the school. In the informal dormitory environment children learn not only sign language but also the content of the culture. In this way, schools become hubs of the communities that surround them, preserving for the next generation the culture of earlier generations. Those who were educated in public schools may still become part of the Deaf Culture as adults, especially if they enter into significant relationships with other Deaf persons and become an active part of the Deaf community. Mainstreamed children may feel comfortable in both Hearing and Deaf worlds but may also be rejected by bothnot totally accepted by the Hearing world but not as fluent in ASL and Deaf Culture (lacking the residential school experience) as if they were raised Deaf. As with many other communities, Deaf Culture also has its own foundational stories. For example, according to popular legend, the origin of signed languages can be traced to the emergence of a large community that developed around the first public school for deaf children in France, founded around 1755 100 by Charles-Michel, Abb de lEpe, a French Roman Catholic abbot. The abbot was given the responsibility of teaching catechism to twin deaf girls so that they could take their first communion. According to legend, he became so enthralled with the concept of language and communication in inaudible modes that he eventually devoted his entire life to establishing the first school for deaf boys.[ 9 ] Great folktales have arisen about the abbot (ranging from extreme coincidences to supernatural powers), but at best he can be credited with having promoted the recognition of signed languagefor all his efforts, he was not its inventor. The story of Epe (and similar stories about Gallaudet in the United States) has taken on great importance, however, as a foundational narrative about the creation of community.[ 10 ] In addition to sharing a language, norms, history, and common foundational stories, the Deaf community is a community, at least in part, because it sees itself as one. This is perceived as a significant difference from the experience of other people with disabilities. Since most culturally Deaf people are reared in the Deaf community, go to the same residential schools, speak the same language, and participate in the same culture, they see themselves as radically different from other people with disabilities who, unless they take steps to become politically organized, are often isolated from others with their particular disability. As Davis notes, Aside from self-help or social groups, people with disabilities have only relatively recently begun to think of themselves as a community. For example, if a person is born without a leg, or contracts polio or meningitis and loses the ability to walk or speak, that person is not automatically part of a culture, a language, a way of life.[ 11 ] Thus Deaf Culture is not simply a camaraderie with others who have a similar physical condition, but is, like many other cultures in the traditional sense of the term, historically created and actively transmitted across generations.[ 12 ] It is interesting to note that, as a cultural group, the Deaf have also been subject to cultural appropriation, especially in terms of their language. Kathy Black, a pastor and interpreter for Deaf religious communities, notes that almost any time she interprets to a mixed audience, Hearing people come up to her and comment on how inspiring the signing was, or how much more meaningful the worship was because of this added dimension. She notes that these Hearing people have minimal, if any, experience or knowledge of deafness and do not understand the language at all. For example, she tells this story from a graduation ceremony: I was interpreting and doing fine until the choir began singing in Latin. Thinking it was in English, I started signing what I thought I heard. Quickly I realized I had no idea what they were saying but 101 felt more awkward stopping after I had already started signing. There was no easy way off the stage so very
gracefully I explained to the deaf people that I had made a mistake and that the song was really in Latin and what did they want me to do. They signed back from the pews that they wanted me to tell them a story, so I did. I told the story in perfect time to the music and ended, of course, when the choir ended. After the service, several hearing people came up to me and told me how inspired they were by the music interpreting. One woman had tears in her eyes and told me how she had experienced God in a way she never felt was possible. I did not have the nerve to tell her I was really signing a story about an elephant![ 13 ] Perhaps the appropriation of Deaf Culture, whether it is the popular I-love-you sign or a more profound sense of feeling moved, is one of the clearest signals that the Deaf are not just a disabled group but rather a legitimate culture with all of the benefits and dangers therein. An examination of Deaf Culture shows that to be deaf/Deaf is both a sensory and a cultural difference. In most cases, Deaf people are both Deaf and deaf, and their discussions and arguments over issues of identity show that these two categories are often interrelated in complex ways. Divisions are made along cultural and linguistic lines as well as on the degree of hearing loss. This is a challenging issue for members of the Hearing culture to understand. The interplay between sensory perception and cultural identity is an issue that has been the subject of little examination within the Deaf community, perhaps because many are so protective of their cultural identity that they choose to overlook the sensory implications. However, a close examination of Deaf Culture shows it to be more than just a linguistic minority group. As with other cultures, the specific characteristics of the community are at least in part connected to their situations of existence, including hearing loss, institutionalization, and experiences of difference. The cultural values named earlier in this chapter, for example, differentiate the Deaf from the Hearing based not just on ability to hear but on how one identifies oneself, how one begins and ends conversations, the extent to which gestures and eye contact are expected, and the value judgments placed on privacy and ability to hear. These concerns, while serving to define the Deaf as an independent cultural group, are not unrelated to sensory function and historical identity. Naming ones school, for example, both identifies how one came to join Deaf Culture and prepares the conversation partner for any regional differences in language. Beginning a conversation informally and getting to a point quickly is important when communicating without voice. Expectations for eye contact and gesture are unavoidable for 102 almost any signed language. These cultural differences show it to be inaccurate to call the Deaf just a linguistic minority, as their identity is (at least historically) related to sensory function as well as community formation. This point is important to the current project because it gives us an example of the importance of reflection on limits. There are good reasons why the Deaf often are uncomfortable with the label disabled, especially insofar as they reject medical descriptions of their sensory and linguistic conditions. Yet at the same time, the conditions of their sensory limits are inseparable from Deaf identity as a whole. As was mentioned earlier, many people who are deaf (do not hear) do not identify with Deaf Culture. There are also some who identify as Deaf even though they are able to hear (particularly CODAsChildren of Deaf Adultswho are often raised in Deaf Culture and learn ASL as their primary language). As a whole, however, the existence of Deaf Culture is historically based on and continues to be related to the sensory experience of not being able to hear and of communicating primarily through signed language. The limits model offers one way to make sense of this configurationthat ones limits, while not interpreted as defects, can affect and support ones overall self and communal identity. Standing with the Deaf, I am comfortable rejecting the notion that the inability to hear is a negative characteristic, although many would argue this point. Yet it is unquestionably a limit. Deafness means there are things that one cannot do and does not have access to, whether these relate to pleasure (listening to music), convenience (ordering at a conventional drive-through window), or safety (hearing a standard fire alarm). There are adaptations to help one live comfortably within these limits. At the same time, we must also note that we tend to overlook many limits of Hearing people until we attend to the skills and enhanced awareness of a Deaf person, for example, that a Hearing person is typically not able to read lips or converse (as through ASL) across a large room. All told, the limits may not be negative, yet they are limits all the same. A central argument of Deaf Culture goes something like this: Just because I am deaf does not mean that I am not
as good (at whatever) as you are. It simply means I cannot hear. The limits 103 model supports this notionit simply means that we have limits. Yet simply is a deceptive descriptor in this case, because it allows us to dismiss too quickly an important factor. We all have limits, and it is important to not overlook this fact. These limits are important, and they contribute to self and communal identity, whether through the dramatic example of Deaf Culture, which rejects the label of disability altogether, or through other experiences of disability or limits. Some limits are viewed negatively, or are ones we seek to overcome. These interpretations are based on values and are deserving of reflection (ethical as well as theological). The limits model allows us to examine the values and choices involved in our attitudes toward limits, both specific and general. It also highlights the degree to which limits contribute to human identity, culture, and community. The example of Deaf Culture is an especially interesting one because Deaf Culture contains clearly stated norms, values, history, and other cultural elements. This makes it an especially useful case to examine when looking at the interrelation of limits and identity. However, it is also important to look at other examples, ones that are perhaps more complicated. Let us now turn to a dramatically different example, one that is much more difficult to capture and one that has in fact been avoided by most work on disability studies: the case of cognitive disabilities. A Different Difference: Cognitive Disabilities An examination of the experiences of those with cognitive disabilities[ 14 ] shows some striking similarities to the experiences of the deaf/Deaf, including a long and troubled relationship with institutionalization. In fact, deaf and cognitively disabled individuals were frequently institutionalized together in the eighteenth and nineteenth centuries.[ 15 ] In addition, both deafness and cognitive disability have been analyzed as being constructed notions: they are conditions that do not exist in a vacuum but rather are defined by contrast to a conception of normal.[ 16 ] In his foundational work Inventing the Feeble Mind, James Trent notes that mental retardation is a construction whose changing meaning is shaped both by individuals who initiate and administer policies, programs, and practices, and by the social context to which these individuals are responding.[ 17 ] Speaking of both deafness and cognitive disability, Davis notes, These terms are all hopelessly embroiled in the politics of disability, or ability if you like.[ 18 ] The example of cognitive disabilities also shows striking contrasts to Deaf Culture. One significant difference is that there is no community of the cognitively disabled. Unlike the case with the Deaf, who are often raised or schooled in the Deaf community, if a person is mentally delayed, he or she cannot be said to be part of a culture of the mentally delayed.[ 19 ] Neither shared language nor cultural values can be named or distinguished from those of the nondisabled culture, and there is no foundational story, such as that of the abb, to draw on for understandings of identity or community. There seems to be no broad culture or community of those who experience cognitive disability. Cognitive disability is also an interesting case because it is an example of disability that does not even make sense under the auspices of the minority model. Questions of rights and of access often assume (and even rally around) 104 claims that people with disabilities are just as able (often meaning smart) as those without disabilities. Particularly within the academy, we have seen very little accessibility for or engagement with experiences of cognitive difference, and very little interest in it as a specific topic or category of concern.[ 20 ] Even in the wealth of recent works on disability studies, we see little mention of cognitive disabilities other than histories of institutionalization and sterilization. If mentioned at all, it is typically one addition to a list of various disabilities
without any reference to specificity, just as disability itself is often seen as one addition to a list of various isms or particularities without any interest in specificity. It is our commonsense notion to refer to cognitive difference as a disability, yet this has been the subject of little theoretical (or liberation-focused) work, and those who are cognitively different are often excluded from direct involvement in disability activism themselves. While few would question that those who are cognitively different are (at least in some ways) disabled, especially insofar as they experience oppression and exclusion as well as limits, models of disability have failed to engage or reflect upon cognitive disabilities in relation to disability studies as well as to human self-understanding in general. Cognitive disabilities typically are categorized as substantial limitations in intellectual functioning. According to the American Association on Intellectual and Developmental Disabilities,[ 21 ] cognitive disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills.[ 22 ] Cognitive disabilities are often labeled based on IQ test results (typically a score below 70), but they may also be identified on the basis of developmental delays observed during early childhood. People with cognitive disabilities may have higher than average functioning in some areas (such as art or memorization) but are, to varying degrees, identified as dependent on others for certain social and intellectual tasks. As with other disabilities, cognitive differences can be traced to a variety of causes, such as genetics (Downs syndrome), disease (rubella), or environment (fetal alcohol syndrome). It is important to note that, as with other instantiations of disability, the category here is not as solid as it might appear, and there is no typical cognitively disabled person. An examination of the minimal literature on cognitive disability demonstrates an ongoing concern as to whether and how this category of people can be delineated. A wide variety of observations can lead to the label cognitively disabled, including people who have impaired intellectual development, do not develop or learn as quickly as others, have a limited ability to learn and put learning to use, have a limited capacity in writing and arithmetic, or have difficulty acquiring social skills.[ 23 ] Some scholars argue that the notion of the cognitively disabled is wholly culture relative and in fact a creation of the impact 105 of modernity on Western societies.[ 24 ] They note that in preindustrialized communities, for example, one would find a much greater tolerance of intellectual variability. At other times, societies have banished the cognitively disabled or assigned them a status of less than full humanness. There have been many societal interpretations of cognitive disability, including defining it as a disorder of the senses, a moral flaw, a medical disease, a mental deficiency, a menace to the social fabric, or a variation in the cognitive continuum. Language reflects some of these attitudes: outdated words like idiot, imbecile, feebleminded, moron, defective, and retarded, just as contemporary phrases such as persons with mental retardation, persons with developmental disabilities, persons specially challenged, or persons with special needs all portray societal attitudes towards the category of cognitive disability. While lacking a communal or foundational myth as with Deaf Culture, there is a long and important history associated with societal treatments of cognitive disability, including what are now interpreted as horrific stories of institutionalization, sterilization, and eugenics. A growing literature focusing on the mental hospital, but also relevant to cognitive disabilities, initiated a new era of study in the middle of the twentieth century. Erving Goffmans Asylums appeared in 1961.[ 25 ] Based on his personal observations, Goffman argues that mental hospitals operate as total institutions. As such, hospitals strip patients of their individuality and separate them from people and systems that once supported them. Institutions enact physical and psychological control through the use of locked wards, common uniforms, lack of privacy, and institution-specific naming. Goffman identifies these controls as a form of mortification: the taking of life (as well as individuality) away from the patient. Patients often react to these conditions with hostility or other personality changes, thereby confirming the deviant label applied to them by the institution. Eventually institutionalized patients so thoroughly absorb the label of deviant (or sick, or crazy) that the control associated with total institutionalization becomes more a matter of routine than of necessity. According to Goffman, total institutions turn individual difference (in this case, of cognitive ability) into what we see as deviance and disease.
This principle was applied to cognitive disabilities in Wolf Wolfensbergers influential book The Principle of Normalization in Human Services.[ 26 ] Struck by Goffmans portrayal of the dehumanizing effects of the total institution, Wolfensberger began to construct a rationale for taking the responsibility of care away from the institution and, indeed, for changing the very vision of care. According to Wolfensberger, cognitively disabled people are seen as deviant because their observed quality is viewed as negatively value-charged.[ 27 ] Wolfensberger argues that residential institutions, special school programs, 106 and sheltered workshops emphasize only the devalued qualities of the cognitively disabled, who then take on role expectations that reinforce the same devalued qualities. Treated like children or as subhumans, people with cognitive disabilities assume these roles and act as expected. Wolfensberger and others argue that, in order to change these role expectations, service providers must work with the cognitively disabled to help them assume socially valued behaviors and integrate them into culturally normative settings. Throughout his work, Wolfensberger emphasizes a transition from notions of deviance to demands for dignityhe claims that dignity cannot happen in (deviant-producing) institutions but must be found in full participation in the mainstream of American life. In recent years, Wolfensbergers model of normalization has become the predominant framework for people with cognitive disabilities. The era of the large state institution has passed, and more and more often people with cognitive disabilities live, work, and are educated in relation to the mainstream. As Trent notes, More capable retarded citizens hold full-time jobs, have families, and pay taxesand wreck cars, have extramarital affairs, and get audited by the IRS.[ 28 ] Significant justice concerns remain, with few possibilities for meaningful job opportunities, a lack of funding for appropriate educational opportunities, and a high percentage of people with cognitive disabilities in prison and on death row. Questions of identity linger as well. As Trevor Parmenter asks, Where do the people with an intellectual disability stand in society? Is their position much changed from that of the previous two centuries? Have they been emancipated from the phenomenon of otherness? How can we articulate a meaningful vision of community and social reality for this group?[ 29 ] Even in the contemporary move away from institutional power and control and toward more creative notions of relationality and moral influence, people with cognitive disabilities are still identified as other, are spoken to rather than spoken with, and lack public opportunities for self-determination or claimed identity. Nowhere is this otherness more apparent, and ironically so, than within disability studies. As was discussed in chapter 1, the last twenty years have produced an impressive amount of scholarship regarding disabilities of all kinds as well as a growing literature addressing the physical and theological accessibility of Christian churches. However, the situation is quite different with respect to cognitive disabilities. While some are attending to the inclusion of people with cognitive differences or autism in worship or congregational life, these identities have not been addressed within disability politics or scholarship. Though the point is seldom made explicit, intelligence is typically assumed to be central both to disability politics and to theological reflection and construction. As Christopher Hinkle notes, Many political and academic attempts to address 107 discrimination against those with disabilities reinforce, by their very nature, the equation of intelligence with human worth that marginalizes those who are mentally retarded.[ 30 ] It has become the norm for disability scholars to demand that liberation for people with disabilities come through actions taken by people with disabilities, as they uncover their own voice, worth, independence, and self-confidencebut cognitive disability does not fit neatly into this approach. As Hinkle notes, The romantic idea that once all the barriers are removed and all the ramps are in place, we will all be equal participants in balanced conversation assumes equal intellectual abilities among the participants.[ 31 ] The liberation motif assumes that we are all equally capable, particularly in the area of intellect, and (to date) has made little attempt to address these assumptions. Disability rhetoric has not only been developed without the input of the cognitively disabled (who, for example, are seldom
present at academic conferences), but disability movements also exclude both consideration of and presence of people with cognitive disabilities from the self-liberation that this rhetoric seems to demand. Cognitive disability is difficult to theorize, perhaps much more messy and therefore less appealing than interpreting Deaf Culture. It seems not so much a project of cross-linguistic or cross-cultural dialogue as something quite different. At present, there are no narratives that express the experience of cognitive disability. [ 32 ] As Brett Webb-Mitchell notes, The major problem is that first-person narratives of people with mental retardation have not been collected, heard, and understood by others. Without hearing their voice, we cannot understand their story.[ 33 ] Rather than hearing their stories, we imagine what they might be like, or study the developmental experiences of children (often cognitively nondisabled) rather than looking at cognitively different adults. Webb-Mitchell describes the situation in this way: People with mental retardation have been almost absent from our social gatherings, and the public has been kept uninformed of their condition in society. This problem of not being able to communicate with those who are disabled has a social history as those who are not-yet-disabled people have kept people with mental retardation hidden in institutions in rural settings, or brought them into group homes but rarely visited them or invited them to our congregation, or left them to wander the streets of our cities as homeless citizens.[ 34 ] While some recent attention has been paid to community formation for people who experience cognitive difference (specifically through the LArche movement) and to the inclusion of those with cognitive disabilities into religious 108 worship experiences, little attention has been paid to cognitive disability as a category with theoretical relevance for disability studies.[ 35 ] While disability scholars argue that our disciplinary commitment means not distinguishing between good and bad disabilities, refusing to stigmatize people with intellectual disabilities as inherently more impaired than those with ambulatory disabilities, for example,[ 36 ] cognitive disability is still marginalized. It is an issue that is foreign (we do not see people with cognitive disabilities in the academy), threatening (it raises significant ethical and philosophical questions about the nature and characteristics of humanity), and even frightening (especially for those of us who love our intellectual abilities). Within a discourse dominated by intellectual and academic rigor, it is hard to know where an entry point for the cognitively disabled may appear. Yet insofar as we believe that people with cognitive disabilities are people, or even, with McFague, as we see them as part of the body of God, the experience of cognitive disability is unavoidable as we consider and theorize what it means to be human. Limits and Theological Anthropology The preceding discussions of Deaf Culture and cognitive disabilities highlight some of the messiness that comes from reflection on actual embodiment. Even in the attempt to explore and emphasize difference, this discussion itself is also an exercise in categorization (i.e., it would have been a different project to look at actual Deaf and cognitively disabled individuals) and in distance (speaking of others rather than of myself). The argument made earlier that McFague did not attend adequately to the full diversity of human life is one that could be offered against this project as well. However, even glancing from a distance at these two broad examples of embodied particularity offers theological insights that enflesh the limits model, while simultaneously offering depth to our earlier analysis of McFagues model of the body of God. McFague grounds her notion of anthropology in discussions of space and place. These two categories are helpful for making sense of identity issues for the Deaf and cognitively disabled. For the Deaf community, a key concern has been with finding their placenot as unequal participants in the Hearing world, but in their own communal home, with their own values and norms. Insofar as the Hearing community has denied the Deaf their
space, or has made our space inaccessible to visitors from this other land (e.g., failing to install TTYs or to arrange for interpreters at academic conferences), we are guilty of McFagues sin of Us versus Us. For those with cognitive disabilities, the issue of space and place is relevant as well. The era of institutionalization 109 attempted to keep them out of our space and to limit the (financial and other) resources that were given to their space. McFague would identify this as a lie that fails to acknowledge our shared history (from the common creation story) and our shared home (the earth or the body of God which we all inhabit). Space and place, for McFague, also include a sense of responsibility for the otherwe must not abuse the resources (and habitat) of others, and we must recognize that we have a special responsibility as the ones who are self-consciously selfconscious.[ 37 ] Attempts at normalizating (or mainstreaming) the cognitively disabled could be understood as being successful only insofar as we share all of our space (not just allowing them to bag our groceries but creating real opportunities for employment, socialization, and recreation) and are respectful of their needs, broadly defined by McFague to include loving families, education, medicine, meaningful work, music, art, and poetry[ 38 ] or whatever else might be most appropriate. Rather than sinful selfishness, we must acknowledge our home (the earth) to be their place as well as ours. The notion of limits offers an additional facet to this example. In the limits model, the fact that all people are limited to varying degrees is highlighted. The binary categories of us and them are challenged. We recognize that it is not only those who are labeled disabled that experience limits; limits are something inherent in the experience of humanity. Rather than identifying this as an inherently negative or evil characteristic, limits are understood to be part of creation. This does not mean that we ought not strive to overcome or adapt to limits; rather, it highlights that our interpretation of limits is based on values that are appropriate for ethical and theological reflection, and that alternate interpretations are both possible and appropriate. Under this model, Deafness may be valued as a difference rather than interpreted simply as a defect, and cognitive disabilities may be considered an appropriate subject for theoretical and theological reflection rather than simply categorized as an abnormality. However, the limits model does not stipulate that all limits are necessarily normal or even good. It is much more complicated than this. The debate over cochlear implants raises very significant questions as to whether one would (or should) choose to be Hearing rather than Deaf. The example of cognitive disabilities, including the ways in which it is difficult to interpret and theorize, also attends to the notion that embracing all limits as normal or desirable is a very difficult thing even to imagine. Limits are, by their nature, limiting. Much of human history shows a creative demand to overcome limits, whether it be in the form of traveling faster, communicating over longer distances, or extending life. It is not the argument of the limits model that we should all want to be disabled, or even that we should embrace and be happy about all our limits. The importance of this model is its demand that limits, as well as the diversity 110 of ability, must be seen as integral elements of our understandings of self and other, as key characteristics for reflection in a theological anthropology. The implications of limits for theological anthropology are not confined to understandings of disability. One interesting example of the applications of a limits model (though not identified as such) can be seen in the ethical work of Sharon Welch.[ 39 ] Welch describes her anthropology as postmodern humanism, a phrase that she notes is itself a contradiction in terms. She defines this as a turn to humanism as the site of engaging different claims about not only social policy but also the very nature of good and evil, of justice, order, power, and chaos. Feminists, men and women involved in the Religious Right, in communitarianism, in the politics of meaning, all are engaged in the construction of group and individual identity, in often mutually exclusive constructions of what it means to be human. To turn to humanism, then, is not to find an answer, an ahistorical or essential resolution to this debate, but rather to name
what is at stakeradically different constructions of order, radically different ways of engaging chaos, radically different views of what sustains creativity and community, of that which prevents injustice and cruelty.[ 40 ] For Welch, key to this project is an acknowledgment of limits. As she writes, To acknowledge ones limits includes acknowledging the limits of others, and it also includes acknowledging the potential wisdom and insights of others as well as of oneself.[ 41 ] Similar to my own argument, Welch suggests that the existence of limits is not necessarily negative but rather is an unavoidable part of being human. This perspective on limits leads to her ethical proposal: From this matrix of seeing ourselves as flawedbut without attributing to that flaw fall, shame, or guiltthere can emerge a nondualistic vocabulary of strength and weakness, of insight and deceptionone that emphasizes accountability, not guilt, a sensibility that encompasses a good-humored recognition of the accidents, the surprises, the muddles that characterize our attempts to implement the good.[ 42 ] Welch argues that, if we recognize our limits, the American dream and American despair are no longer our only options. By embracing limits, we are instead able to construct and embrace a national identity that includes success and failure, prosperity and loss, freedom and restriction. This nondualistic vocabulary and acceptance of limits allows us to create and resist without the illusion of progress to live fully and well without hopes for ultimate victory and certain vindication.[ 43 ] Acknowledgment of limits means neither defining ourselves in 111 terms of perfection and thinking too highly of ourselves as individuals or as a community/nation (uncritically accepting or expecting the American dream) nor defining ourselves based on what we lack and thinking too lowly of ourselves and our community/nation (falling into despair, cynicism, or apathy). Instead, it offers us an ethic that makes sense of who we are and what we want to be, without depending on illusory goals that fail to acknowledge the realities of human individual and communal existence. The limits model demands that we reject unrealistic ideals or illusions of perfection, recognizing that such images lead to unproductive and dangerous dualisms, such as the ones examined by Welch. The limits model suggests instead that we recognize that limits are a normal and unsurprising aspect of humanity, a recognition that leads us to new ethical and relational formulations. This perspective provides an essential starting point from which we may begin conversations and reflections on undertheorized facets of human embodied experience, including Deafness and cognitive difference. It calls for a reexamination of dualistic categories such as disability, recognizing that these are sometimes arbitrary constructions that, while having some political importance, also act to divide and oppress. At the same time, the suffering that does occur related to disability or limits should not be diminished. This perspective allows us to reflect on our interpretations of limits as well as to identify areas where our limits become disabling due to social or physical barriers. Rather than leading us to fragmentation or universality, the limits model offers a ground for conversation and a standpoint from which to challenge exclusionary constructions of difference. The preceding discussion has proposed that the limits model provides a helpful way to approach anthropological considerations. It offers a useful framework for understanding issues of community (including Deaf Culture and notions of America), as well as what we might sometimes define as individual constitution (what is cognitive disability, how do we make sense of disability in general). These are valuable questions and ones that are difficult for us to recognize when we fail to attend to the limits experienced through disability. Yet if we are exploring the possibilities of this model for constructive theology, we must also attend to its implications for our understandings and interpretations of God. Limits and God Reflection on bodies leads us to an awareness of limits, which clearly has significant anthropological
implications. The notion of limits has potential for 112 descriptions or understandings of God as well. If, as McFague claims, the body of God includes all bodies, or if, as we read in Genesis 1, humans are created in the image of God, we must then ask what it tells us about God that humans are limited. This question can be fruitful within both the medical model (is Gods power limited?) and the minority group model (does God understand oppression and exclusion?). The limits model brings in a new perspective that asks questions about the nature of Gods creation as well as the nature of Gods being. McFague highlights the process of naming, which she argues is just as important as action; as she writes, What we call something, how we name it, is to a great extent what it is to us.[ 44 ] The limits model highlights that our limits are an unsurprising part of being human, and at the same time identifies areas where limits become disabling due to social or physical barriers. Similarly, this idea of limits is also relevant for our understandings of God. When we think of limits, we think of limit-ed. We tend to imagine that a God with limits (e.g., a God with an impairment) is less (at best) or defective (at worst). Why would we worship, or even want, a limit-ed God? If God has an impairment, we tend (from a limited-ness perspective) to think of what God is not (a blind God cannot see, a deaf God cannot hear). However, applying the limits model may instead give us a very different way to think of God. When we imagine an unlimited God, there is a subtle implication that the more limits we have, the less we are like God. This is reminiscent of Dalys claim that if God is male, then the male is God. If God is unlimited, then the less limited are more like God, and the more limited are less like God. The notion that God includes limits counters this implication. This is relevant not only for people with disabilities but also for all of us who experience limits to varying degrees. To use McFagues criteria, a metaphorical understanding of God that is open to limits is consistent with both the Christian tradition and contemporary science. Even some of the most traditional, anthropomorphic notions of God suggest that God took limits willinglyfor example, by creating or allowing free will, or by taking on personhood (and death) through Jesus. Both contemporary science and postmodernism include claims about limits: finite resources, partiality of knowledge, and fluid borders and boundaries. A notion of God that includes limits is consonant with these contemporary understandings of finitude, and even with experiences of decay and death. Imaging God as including limits has a number of positive benefits. The notion of limits as applied to God teaches us, for example, that disability does not mean incomplete and that difference is not dangerous.[ 45 ] Such attention to limits can add to our understandings of God. For example, reflecting on experiences of disability, limits might be seen to speak to at least three characteristics: perseverance, strength, and creativity. People with disabilities often 113 have to work harder than the able-bodied to gain access to buildings, education, decent wages, or relationships. Such characteristics of perseverance that come when one seeks to live with limits might also be characteristics that we would find in or wish to attribute to God. Limits also speak to strength, as people with disabilities are often stronger in at least some ways than normals (as anyone who has used crutches can attest). Such strength is often one of the attributes given to the divine. The existence of limits also speaks to creativity, as we all (whatever our limits) develop alternatives and work to compensate for what we cannot do, whether designing a new wheelchair or developing a satellite. The human proclivity toward creatively adapting to our limits might be a characteristic represented in a limits God. Limits might show a God that values creativity, and the variety of limitations might show a divine preference for diversity. Finally, recognition of the sin of Me versus Myself that I proposed in chapter 3 might highlight an image of God as one who neither exaggerates nor denies limitation and instead is represented as an authentic and fully grounded self. My proposal here is that, when we think about God, it is important to recognize the existence and normalcy of
limits. Limits do not tell us all that God is or all that we are, individually or as communities. As McFague would argue, it is at best one piece of the puzzle, one square of the quilt. Or, more modestly, it is one question to ask, one lens to try on: How do our understandings of self and God make sense of the fact that we all experience limits, that some limits are seen as more natural than others, and that limits are much more ambiguous than we often think? Rather than thinking of limits solely in a negative sense (what we, or what God, cannot do), this perspective offers alternatives for thinking about boundaries and possibilities. In an age of war, terrorism, economic injustice, and environmental risk, a recognition and theological affirmation of limits seems more responsible than apathy or omnipotent control and offers a perspective that can lead to hopeful possibilities of perseverance, strength, creativity, and honest engagement with the self and the other. The liberation models presented by Block, Black, and Eiesland demonstrate some of the insights that can be gained from a reflection on experiences of limits, particularly the experience(s) of disability. McFagues metaphorical approach makes a significant contribution to these models, suggesting that multiple metaphors are needed and that each metaphor must be open to evaluation and critique. In addition, McFagues model of the world as the body of God presents us with an even more basic metaphor from which to enter our reflections on the image of God from the standpoint of embodiment. Just as both the medical model and the minority model of disability offer a significant lens but not a complete picture, the theological proposals offered by body-attentive theologies and by disability liberation theologies offer important pieces but do 114 not capture the entirety of theological possibility. My proposal that we explore the perspective of limits offers additional possibilities for theological reflection and constructive images of God, especially insofar as it complicates our notions of able/disabled, encourages us to think of limits as a relevant aspect of human embodied experience, and invites reflection on attitudes and practices in relation to various limits. Critical reflection on embodiment has the potential to keep us groundedembodied, as it werein an understanding of limits and both what they enable and what they make difficult. This is the perspective offered by the limits model, one that I think is essential for theology, both as we contribute our reflections to issues of justice and issues of individual and communal identity and also as we propose images of God that represent and reflect these diverse embodied experiences. This concluding chapter summarizes the project and suggests directions for future work. Existing theological models need to be evaluated based on how well they can attend to experiences of disability, and space needs to be made for new liberation theologies of disability. Theology must also be more intentional in its consideration of human limits, not just as they exhibit themselves in situations of disability, but as we all experience them throughout our lives. The limits model suggests a new lens for the understanding of self and of community in a postmodern age, and invites conversation with other discourses of embodiment and difference. In these ways and many others, the perspectives that come from engagement with disability and embodied limits are essential for theology, contributing theoretical complexity to real issues of justice while simultaneously offering possibilities for new images and theological constructions that attend appropriately to human embodiment and diversity. theological models disability liberation limits postmodern embodied justice diversity
Conclusion
Embodied Limits and Constructive Possibilities disability and christian theology conclusion The thesis of this work has been that critical reflection on disability has the potential to clarify and expand theological models, offering a significant contribution to the fields of both theology and disability studies. We
have seen that it is valuable for contemporary theologians and religious thinkers to consider and reflect upon bodies in diverse manifestations of embodiment, and that existing theological models can be challenged to include awareness of and attention to disability. This draws on the most simplistic proposal of the medical modelthat there are bodies that exhibit variations of ability and differencebut rejects the medical models value claim that these bodies are less important than so-called normal bodies or that they are in need of repair. We have also seen the beginning of a literature that might be described as a disability liberation theology. This approach builds on the minority models observation that people with disabilities face significant discrimination and oppression in society, and focuses its theological claims on concrete issues of liberation and justice. While the medical and minority models are, at present, the two most common ways of understanding disability, we have noted that these models fail to capture the full diversity of experiences of disabilitywhich may exhibit fluidity over time and situationand also make little sense of experiences such as chronic pain. In response to calls for a third way, I have proposed attention to limits as a complement to the existing models. This new model attends to human 116 diversity by recognizing the prevalence of limits and by rejecting dualistic categories and negative valuations. The limits model highlights the fact that human limits need not (and perhaps ought not) be seen as negative or as something that is not or that cannot be done, and instead claims that limits are an important part of being human a fact that is overlooked when we reflect on the human body as generic. The limits model also reminds us that normal bodies are not as much the norm as we might think, and that it thus is inappropriate for an ideal or imaginary normative body to be the starting point for our theoretical or theological reflections. The limits model offers a way to add necessary complexity to our theological and anthropological reflections. This complexity should come as no surprise: we know that bodies are leaky, messy things, and both philosophy and theology have repeatedly struggled with what it means to have limitsincluding the ultimate limit, death. The presence of limits is, in fact, more normal than their absence. This leads us to the theological claim that the recognition of limits ought not be tied uncritically to interpretations of value and worth. We are also aware that experiences and interpretations of limits change across time, as some limiting conditions are eliminated (polio) and others arise (carpal tunnel and chronic fatigue syndromes). The claim of the limits model is not that we should refuse to overcome or adapt to limits, nor that we should give up on medical advances or adaptive technology. It is still appropriate to suggest that some limits are to be rejected, including those that cause harm to self and others (alcoholism, violence, poverty). We need McFagues notion of space and place, or other criteria for evaluation, to help us understand which limits are good and which are wrong, which to embrace and which to creatively overcome. The limits model provides a first step in this process of evaluation, allowing us to see assumptions and barriers, helping us to move beyond labels toward a more fully grounded view of embodiment. It is my argument that disability and other experiences of human limits are interesting and worthy of religious and theological reflection. This also has significance for disability studies. While progress has been made in recent years toward disability rights as well as toward the advancement of the field of disability studies, we are becoming aware that current interpretations of disability, as delineated by the functional/medical and social/minority models, are not sufficient for reflection on experiences of disability and diverse embodiment. As with any model, each perspective highlights certain facets and overlooks others. One might consider the experiences of two wheelchair users: one paralyzed from birth, another paralyzed in a skiing accident. Neither the medical nor the minority model differentiates between these two experiences. The medical model sees similar physiological conditions: an inability to walk 117 and a loss of sensation and motor skills in the legs. The minority model would see similar experiences: barriers
of architecture and attitude due to societal interpretations of wheelchair use. The limits model offers a third way, a new perspective, one that allows us to reflect on each individuals unique experiences, recognizing that what is interpreted as normal or limiting by each individual may be quite different. The limits model recognizes that these two individuals may vary in terms of their attitudes toward their disabilities, their own definitions and understandings of disability, and the way and degree to which they see limits as affecting their lives. Additionally, neither the medical nor the minority model attends appropriately to the fluidity of disability as a category, especially insofar as all people experience limits to at least some degree. Because the limits model begins with reflection on distinct experiences of embodiment, rather than with assumptions of normalcy or political convictions, it allows for a diversity of interpretations and meaning-making. Both the medical and the minority models are valuable for the perspectives they offer, but even together they do not fully capture the complexity of experiences of diversity or human embodiment. The limits model adds a necessary component that is lacking in other models. Recognizing that knowledge also has limits, the proposal of the limits model necessitates conversation, interaction, and relationship. Both theology and disability studies can benefit from such conversations. Theological efforts, including the recent body craze, need to attend to the full diversity of experiences of human embodiment in order to be authentic and appropriately grounded. Disability studies can contribute not only an awareness of the existence of disability but also a sense of the complexity of varied instantiations of disability. From the other side, disability studies needs a conversation partner and a place where its own normative claims can be examined and challenged. Theology can contribute its own critical interest in reflecting upon what it means to be human. Conversations between disability and theology can be mutually beneficial, allowing us to challenge problematic metaphors and oppressive practices as well as to imagine new possibilities for theoretical and theological contributions. We must consider the implications of diverse human experiences of embodiment in our theological reflections and religious practices. Rather than proposing a single theology or a single image of God, this is a project with an uncertain and indeterminate end. It expands McFagues model by demanding reflection on actual experiences of messy, complicated embodiment, including the prevalence of limits. It challenges disability studies to engage with theology to explore constructive responses to such experiences of limits. This model invites each of us to move beyond sinful deception 118 into fuller embodiments of care and community by being more open to our own individual limits and abilities. By encouraging us to look more closely at ourselves and each other, the limits model offers significant possibilities for theological reflection, interpretation of disability, self-understanding, and communal practice. The perspective of the limits model cannot tell us all that God is, or all that the church should be, or all that we are as individuals or as communities, but it does tell us something vitally important. As McFague might note, it is one piece of the puzzle, one square of the quilt, but one that is both illuminating and essential. Reflection on disability should not scare us, and it should not be taken as theologically uninteresting. The limits model does not aim to dismiss or deny experiences of evil or suffering, nor does it devalue efforts to overcome limitsit does not propose that all limits are good or that we ought to embrace or accept them all. Rather, this model recognizes a complexity of experiences and offers a possibility for interpretation and sense-making. It allows us to recognize and reject some of our blind spots, including overwhelming biases against certain limits, and also allows us to evaluate and struggle with limits that are problematic or unjust. Challenging these conventions makes us think in new and unfamiliar ways not just about embodiment but also about anthropological assumptions and ideas about the nature of God. The limits model also allows us to imagine new possibilities, focusing on characteristics such as perseverance, strength, and creativity. Critical reflection on embodiment has the potential to keep us grounded, embodied as it were, in understandings of what certain limits may enable as well as what they may make difficult.
Rather than interpreting disability as something that is theologically uninteresting or that belongs solely to the realm of care, we have seen that disability can make a valuable contribution to theological reflection. Existing models need to be evaluated based on how well they can attend to experiences of disability, and space needs to be made for new liberation theologies of disability. Beyond this, we also need to be more intentional in our consideration of human limits, not just as they exhibit themselves in situations of disability but as we all experience them throughout our lives. When we are willing to acknowledge that limits are a normal and unsurprising aspect of human life, a whole new world of theological reflection opens to us. The limits model suggests that we must challenge existing dichotomies of us and them, recognizing instead a fluidity of limits. It suggests a new lens for the understanding of self and of community in a postmodern age and invites conversation with other discourses of embodiment and difference. The model can open us to new perspectives on characteristics such as creativity and ingenuity, attending to the 119 benefits that can come from engagement with limits. It also offers us new ways to attend to our environment including which limits are accommodated and which are notand has significant implications for the analysis of power and responsibility. In these ways and many others, the perspectives that come from engagement with disability and embodied limits are essential for theology, contributing theoretical complexity to real issues of justice while simultaneously offering possibilities for new images and theological constructions that attend appropriately to human embodiment and diversity. My local university campus posts a banner over the student center each September that reads, Know no limits. The proposal of this book is completely the opposite: know all limits. Limits are a normal and unsurprising aspect of life. Yet we choose, for whatever reason, to stigmatize some and normalize others. When we dismiss disability as being an exceptional and othering experience, we deny the normality of limits in all of our lives, pretend that we do not experience increasing limits as we age, and even refuse to acknowledge the future limit of death. In these denials, we live a lie, a lie that harms other people (those on whom we project and reject these limits), the environment (when we pretend that it also has no limits), and even our selves. We can no longer consider what it is to be embodiedto have race, gender, sexual orientation, power, politics, religionwithout also considering what it is to have embodied limits. We can no longer ignore reflection on experiences of disability and other embodied limits in our theological constructions. We must attend to the values that we place on limits, including on people with visible and profound limits, and must challenge our notions of what it is to be normal. This book proposes some first steps in such a process. Yet the work has only just begun. What does it mean to construct theology from a perspective that values human limits, one that embraces experiences of disability as normal? How do we make sense of our desires for health, long life, and the absence of pain within such a perspective? How might a theology of limits interact with other justice concerns that focus on social construction or that may perhaps reject limits as an appropriate description of embodied difference? The challenge of this bookto examine and embrace and reinterpret our limitsis by no means an easy or uncomplicated proposal. Because of our individual limits, this is also necessarily a communal project. As we explore together our limits and the things that these limits make possible, we are called into new visions of ourselves and of each other in a beautifully diverse world. We are called into limit-ness, to being fully present in our embodied limits. This opens us to a theology of possibility, of becoming rather than being, of movement rather than stagnation. The recognition of limits opens us to new understandings of 120 creativity, community, and interdependence. It allows us to share the stories of our wishes and our fears and to reflect theologically and ethically on these experiences and values. It opens us to life as we actually live it. It comes out of reflection on the complexity of disability, and it deliberately embraces experiences of disability, but it does not stop there. In the ways I have suggested in these pages, and in others not yet even imagined, a
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