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- Herausgeber: IVP Academic
- Kategorie: Geisteswissenschaft
- Sprache: Englisch
- 2019 IVP Readers' Choice Award What does healing mean for people with disabilities?The Gospels are filled with accounts of Jesus offering physical healing. But even as churches today seek to follow the way of Jesus, people with disabilities all too often experience the very opposite of healing and life-giving community: exclusion, judgment, barriers. Misinterpretation and misapplication of biblical healing narratives can do great damage, yet those who take the Bible seriously mustn't avoid these passages either.Bethany McKinney Fox believes that Christian communities are better off when people with disabilities are an integral part of our common life. In Disability and the Way of Jesus, she considers how the stories of Jesus' healings can guide us toward mutual thriving.How did Jesus' original audience understand his works of healing, and how should we relate to these texts today? After examining the healing narratives in their biblical and cultural contexts, Fox considers perspectives from medical doctors, disability scholars, and pastors to more fully understand what Jesus does as he heals and how he points the way for relationships with people with disabilities. Personal reflections from Christians with disabilities are featured throughout the book, which concludes with suggestions for concrete practices adaptable to a variety of church settings.Bridging biblical studies, ethics, and disability studies with the work of practitioners, Fox provides a unique resource that is both theologically grounded and winsomely practical. Disability and the Way of Jesus provides new lenses on holistic healing for scholars, laypeople, and ministry leaders who care about welcoming all people as Jesus would.
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DISABILITY AND THE WAY OF JESUS
Holistic Healing in the Gospels and the Church
Foreword by John Swinton
For Terry Cain
Contents
FOREWORD
JOHN SWINTON
THE ISSUES AROUND HEALING, particularly in relation to the lives of people living with disabilities is, at times, difficult and more than a little fraught. I always remember the experience of a friend of mine, Monica, who has severe cerebral palsy that affects her speech and her mobility. She is someone who loves Jesus deeply. A few years ago she went to a healing service in my home town of Aberdeen in Scotland. At one point she went forward for healing. She had been experiencing really debilitating back pains for a number of weeks and wanted to ask God to alleviate her condition. She went forward. However, before she had time to explain her back issue, the pastor began to pray for the release of the demons that had caused her to become “a cripple” and that had “taken her speech from her.” Needless to say she left: angry, upset, alienated, and humiliated. The pastor’s “spiritual diagnosis” of her situation had broken the body of Christ and left her alone, at least within that company.
One of the real problems with our understanding of the healing ministry is that most of us inside and outside of the church do not realize how shaped and formed we are by particular expectations that come to us via a particular understanding of medicine. It is almost impossible for Western people to think about health without first thinking about medicine. This, I suspect, indicates the ideological power of medicine that blinds us to some important aspects of health and healing. Most of the healing that goes on within our communities is not done within the medical realm but relates to our families, our friends, and those who care and tend for us on a daily basis.
The problem for the pastor, like many of us, is that he was working with a model of health defined as the absence of illness, disease, and disability. He also holds an unfortunate belief that equates disability (and probably all illness) to the demonic, something that Bethany pushes hard against in this book. Connection. If health is understood as the absence of illness and healing as the means to that end, the practices of health care and the practices of healing will inevitably be shaped and formed by that assumption. Within such an understanding, healing means identifying a broken or damaged aspect of the person before you and using your medical or/and spiritual gifts to eradicate that “black spot.” A good deal of Christian healing implicitly and explicitly runs along these lines. Monica’s experience makes the point in terms of the assumptions that lie behind certain approaches to healing that are underpinned by a model of health as the absence of illness, disease, or difference. There are, however, other ways in which we can think about health and healing even within the healing ministry of Jesus.
It is interesting to note that the Bible has no equivalent word to health as we might understand it within a contemporary biomedical context. The closest word is shalom. The Hebrew term šālôm occurs 250 times in the Hebrew Bible. The basic meaning of the word shalom is “peace.” However, the type of peace that is expressed in the concept of shalom is radical and vital in terms of understanding health and healing. Shalom has specific theological meaning and intention. The root meaning of the word shalom is wholeness, completeness, and well-being.1 It does however have several secondary meanings, encompassing health (in relation to illness and disease), security, friendship, prosperity, justice, righteousness, and salvation, all of which are necessary if wholeness, completeness, and well-being are to come about.2 The meaning of the word shalom is thus seen to express opposition to any disturbance in the well-being of a person, society, or nation.3 Shalom is therefore considerably more than the absence of conflict. It has in essence to do with the quality of a person’s life and quality of their relationships with God, with one another, and with the rest of creation. Shalom is not the absence of illness, disease, or disability. It has to do with the presence of God. If this is the case, then healing has not solely to do with the eradication of broken bits in people’s bodies or lives. Healing always has first and foremost to do with connecting and reconnecting people to God.
This takes us to the second point. Healing was clearly very important for Jesus. But not necessarily in the ways we might assume. If we take our highly medicalized worldview and use it to read back meaning into second century Mediterranean culture, we risk seeing Jesus in terms of a doctor who encounters broken bits and fixes them. However, if we read the Gospels theologically, from the perspective of shalom—which is presumably the way that Jesus as a Jew would think—something interesting emerges. If health is shalom, then Jesus’ healings were not simply intended as compassionate acts (although clearly, they were that). Rather, they were statements about him and ways of authenticating God’s redemptive movement through the incarnation. Take for example Jesus’ encounter in Matthew 9:4-6 with a paralyzed man:
But Jesus, perceiving their thoughts, said, “Why do you think evil in your hearts? For which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Stand up and walk’? But so that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic—“Stand up, take your bed and go to your home.”
We may assume the point of the miracle is the healing. However, could it not be that the point of the healing is the revelation of Jesus? Who can forgive sins? Only God can forgive sins. Jesus is God. When Jesus heals the leper in Matthew’s Gospel he sends him back to the temple to testify to what he has seen (Mt 8:1-4). The point of the miracle is to testify to Jesus as the one who has come to redeem us. If we allow ourselves to look beyond that which is apparently obvious, toward that which is theological and christological, the miracles take on a different shape and intention. There is no question that God heals miraculously and that God can do this to whomsoever God wants to. But the point of the miracles is to reveal Jesus for who he was, is, and will be.
Perhaps if the pastor had taken time to get to know Monica and to understand that she lived a peaceful shalomic life with Jesus, within which her apparent impairments were not a problem for her, he might have been able to use whatever gifts of healing he may have had in a way that was faithful and peaceful. In so doing he would have been able to reveal something truthful about Jesus.
Health and healing are much more interesting and complex than we might assume. In this book Bethany pushes into these complex issues of health and healing as they relate to disability. Sensitively and in a deeply practical and theological way she opens up new space for fresh understandings of what it means to be a human being before a God who is shalom (Judges 6:24); a God who loves people just as they are and who longs for all of us together to live faithfully within a kingdom where shalom can be seen, touched, and felt. I believe this book will make a difference.
ACKNOWLEDGMENTS
WE ARE CALLED to give thanks in all things. My ability to do that kind of ebbs and flows, but in the case of this book, I do feel incredibly grateful for the many conversations, friendships, and encouragements that made this project possible. I feel thankful for my academic and theological mentors and for my colleagues and friends with and without disabilities who have shared their insights about Jesus and healing over the years. Every person who has ever helped me discover the truth and beauty in the life of Jesus has no doubt played a role in my desire to pursue this subject. To my colleagues and friends with disabilities, specifically, whose courage to share their experiences of both healing and wounding encouraged me to dig into these questions about how followers of Jesus today might think about and practice healing in truly healing ways: I am deeply grateful.
Glen Stassen, my doctoral advisor at Fuller Seminary, who journeyed with me through the first iteration of this project, I thank you for your encouragement of me as a scholar and for your deep commitment to the way of Jesus that impacted all of your students. We miss your voice, even as we rejoice that you now are with your Savior face to face. John Swinton, who also served as a key mentor along the way, thank you for your insightful comments, your encouragement for me to take my work seriously, and for your ready jokes that remind me: but not too seriously. Thanks also to Amos Yong and Ben Conner whose helpful critical feedback sharpened aspects of my thinking around this project. And to all of the Summer Institute on Theology and Disability posse, thank you for embodying a theological community that has been for me both intellectually rigorous and personally nurturing—and for the ways we heartily and authentically celebrate one another’s lives and work.
To my many friends with intellectual and developmental disabilities I have had the honor to get to know over the years, and whose presence in my life has deepened my faith and scholarship, I give thanks. Particularly to my students when I taught at Lanterman High School in Los Angeles, and to the core members at L’Arche Wavecrest in Orange, CA (particularly longtime core members Terry Cain, Chris Friedman, and Cathy Acton), the presence of each of you in my life changed me to my core.
I am grateful to all who contributed their reflections and stories of healing to be included in this book. Your perspectives, stories, and insights are invaluable for helping guide the church to follow Jesus’ healing way. Thank you for sharing them. Big thanks also to Jon Boyd, who gave many helpful notes and made the process of publishing a book more joyful and encouraging than I ever imagined possible, and for everyone on his excellent team at IVP Academic.
Finally, I give thanks for my mom who was always as proud of me as any parent could have been, and who is no doubt hosting an elaborate book release party in heaven. And to my partner, Michael, who mediates God’s healing in my life on a daily basis. I could not have thought up a more fitting person to journey through life with. Thank you, and thanks be to God.
INTRODUCTION
FOLLOWING IN THE WAY OF JESUS has been the beautiful adventure of my life. At the same time, many of my friends and colleagues with disabilities have shared experiences of being wounded by people trying to follow in the “healing” way of Jesus, who engage in words and practices that are anything but healing. This disconnect puzzled me. Jesus met people who were blind, deaf, with chronic illnesses, physical pain, and paralysis—and after the encounter these individuals responded positively and were often filled with faith and gratitude. Yet many people today—also blind, deaf, with chronic conditions, mobility impairments, or other disabilities—have expressed how unhealing they have often found churches’ “healing” practices to be. It is both baffling and heartbreaking that followers of Jesus seeking to heal as Jesus healed would be creating communities and practices that are anything but healing for many people with disabilities.
Over the past few decades, an increasing number of people with disabilities have emphasized how physical and social structures that exclude and devalue them can be at least as disabling as any impairment they may have. Though not a perfect or universally agreed-upon way to frame the issue, it’s helpful to note the distinction some people draw between impairment and disability.1 They use impairment to talk about a physical or cognitive characteristic where function is different than expected (usually connected to a medical diagnosis) and disability to refer to ways they are socially excluded or disadvantaged because of that impairment.2 So a theology and its related ecclesial practices that focus simply on bodily healing can feel antiquated and insufficient at best, and at worst be truly harmful. It is unsurprising, then, that a number of people in the disability community are hesitant or averse to centering the texts where Jesus encounters people with disabilities and changes their bodies.
But just ignoring or avoiding the many texts having to do with healing in the Gospels may not be the most helpful way forward, especially for those of us who regard the Bible as authoritative for belief and practice. This book proceeds with the assumption of at least some degree of trust in the Bible as Scripture and is especially aimed at those of us who want to follow the Jesus of the Gospels in our various contexts today. So rather than throw Jesus out with the ableist bathwater, we will dive deep into the Gospel healing narratives to get a full sense of what was taking place and how it matches our prevailing Christian notions and practices of healing or not.
A NOTE ABOUT SELF-IDENTIFICATION AND LANGUAGE
An important and customary practice for those writing on issues of theology and disability is to include a couple of important statements at the outset: (1) how they come to this particular conversation, and (2) why they choose the words they do to talk about various limitations or impairments.
How I come to this topic. How and why someone comes to explore an intersection of theology and disability usually includes details about the author or someone in their family having a disability. In my case, though I do not identify as having a disability, as a woman with a larger body I have experienced stigma and stereotypes related to my body throughout my life, something people with visually perceptible disabilities experience as well. This is a point of personal connection. But my key entry point into conversations and wonderings about disability began mainly through friendship. In high school I became friends with a fellow student named Sam Hayes, and he and I, along with another friend, ate lunch together a couple times a week. Sam was in the special education class and had some physical and intellectual disabilities.
At this point in my life, just a few years after my parents’ divorce, I remained quite emotionally shut down—my way of coping with the loss. In contrast, Sam was emotionally free. When he was happy, sad, angry, or had any other feeling, he felt and expressed it openly and deeply, something I was unsure how to do. I enjoyed being with him and experiencing how he interacted with his emotions and the world around him. He was gifted in a way that I was not, and even if I wasn’t able to fully articulate it at the time, his presence and friendship was enjoyable for its own sake and restorative for my heart.
At the same time, Sam also struggled. He struggled to interact with other students at school, especially those he might have an interest in romantically, so my friend and I offered what basic advice we could. But the point is this: it was a friendship of mutuality, with each of us enjoying and learning from the other. I was grateful for that friendship, and because of it began to notice that the ways others talked about people with intellectual disabilities—as objects of charity or pity, or as “little angels” who did not have complex personalities—did not fit with my own experience. My own life and faith had been enriched through my friendship with Sam and, later, many other folks with intellectual disabilities. It made (and makes) me angry that their vocations within the body of Christ and their gifts are often overlooked. It is clear that our communities and churches are worse off without people with intellectual (and other) disabilities as integral parts of our common life, sharing their own gifts and receiving the gifts of others. And I have become committed to and passionate about nurturing churches and communities where this would happen.
Terminology. Choosing the language to use for these conversations can be extremely fraught, and for good reason. This is terminology that categorizes people, and is connected to identity, so it is both personal and deeply intertwined with ideology. Not to mention that we are attempting to find a term to describe a hugely varied group of people who may share very little in the details of their day-to-day experiences.
Take, for example, the concept of person-first language. For a while, this was the gold standard of terminology around disability. Instead of saying “disabled people,” proponents of person-first language would advocate saying “people with disabilities.” Instead of “Down syndrome child,” they would instruct you to say “child with Down syndrome.” The point of the phrasing was to highlight that a person’s identity is not summed up by their disability—that they are a “person first” and that their diagnosis or disability is merely one aspect of who they are.
But then some folks began to push back against this—particularly some Deaf and autistic people. They felt that using person-first language implied that being Deaf or autistic was something negative, because why else would someone strive to minimize it as a marker of identity? So they intentionally choose to name those aspects first—that they are a Deaf person or an autistic person. This demonstrates that there is no shame in being Deaf or autistic; rather, it is an aspect of their identity, enriching the diversity of humanity, and worth centering and celebrating. Others, however, like my friend who gets called “wheelchair” when using public transit and gets mistaken for any other person who uses a similar mobility device even if they look nothing alike, appreciate person-first language because it emphasizes their personhood that sometimes gets ignored. This is complicated, and no terminology resonates with everyone. But these are conversations worth having. When we are talking abstractly about bodies and their limits, we have to choose some way of naming these experiences, even while regretting the ways these choices may not be everyone’s preferred terms.
Though I will always strive to use a particular community’s or person’s chosen terms when referring to someone specific, I most often use person-first language when talking about people in the abstract, simply to affirm the shared humanity between people of all abilities. Also, as is already clear, I generally choose the word disability as the broad term covering all kinds of physical, intellectual, social, or emotional impairments and diagnoses. Though there are times where other terms (such as sickness or illness) may come up, especially when those are the terms used by my conversation partners in a particular section. Disability and sickness are not always the same, but they can be, and sometimes terminology gets blurry.
My main reason for choosing the term disability as a default is simply that it is the most common, straightforward, widely accepted term across academic disciplines, used by people both with and without disabilities. It is also a term favored by the disability rights community. But this term is not without baggage and controversy, especially since on the surface it focuses on what people are not able to do. It may not be ideal language, but it is the most widely shared terminology for these conversations at the moment.
Happily, we only need to use this abstract terminology when having abstract conversations about broad groups of people, like in this book. When we are talking with individuals directly, we can simply pay attention to the language they use to refer to themselves (if applicable); or more to the point, we can simply refer to them by name. As my friend and colleague David Gayes insightfully pointed out, people can use all the “right, socially acceptable” terms and still be disrespectful and condescending toward him. Language is important, but an attitude of respect and a willingness to learn is even more so.
WHAT COMES NEXT
Ultimately, this book has a constructive purpose: to create a framework for Christian communities to be places of healing in the way of Jesus, with particular attention to members with disabilities (an attention found in Jesus’ own life). The “healing way of Jesus” is the phrase I use to describe what healing means and looks like today, based on the words and actions of Jesus in the Gospels. The framework is definite enough to provide real guidance and boundaries but open enough to be applied to traditions and denominations of all kinds. We get there by way of extended engagement with the Gospels’ healing narratives, considering them from many different angles, allowing our minds and hearts to get thoroughly caught up in this healing way of Jesus.
Imagine the collection of Jesus’ healing narratives as a gemstone. As you lift the stone to the light and turn it, different facets sparkle and shine, while others are shadowed or less visible. But if you hold it in your hand for a good long time, and turn it slowly, continuing to be attentive and curious (whether through vision, touch, or any other senses), you begin to appreciate it more fully and recognize the particular elements of its beauty. As we dive into the healing narratives, each chapter will turn the gemstone a bit, highlighting certain facets to add to the complexity of the impression. The experience will be immersive, but not exhaustive. There is certainly much more to say about the healing texts than I have in this book; my focus remains on the constructive task of creating practices and communities of healing today. So after we get a deep sense of what that gemstone is like, we will then imagine ways to cut stones in our own communities to capture some of that same sparkle and shine.
The first two chapters provide direction for how we will go about our observation. Chapter one addresses the complexity of developing Christian practices in modern (particularly Western) contexts based on the actions of Jesus within a dramatically different context. We want to cut our gemstones to catch the light in the same way, but we now have very different tools available for the task, and we unearth our raw materials thousands of miles from the originals. This chapter details the difficulty of the endeavor and offers a method for bridging the gap between the Gospels’ healing texts and our contemporary practices. In chapter two, we delve into the context of Jesus’ day and how those living in his region at that time might have made sense of his healings. Today we have different sets of assumptions about health, bodies, abilities, disabilities, medicine, and in some ways about God and the world in general. To more accurately perceive some of the different facets of the gemstone, we need to understand more about how its edges, cut, and color might have struck people then.
Starting in chapter three we begin to slowly rotate the gemstone, examining the healing narratives from different ideological starting points. We continue the rotation through chapter six, with each chapter offering its own set of perspectives and interpretations. Some observations come up a number of times, some are unique to a specific point of view, and some narratives end up receiving more attention than others. But noticing so many facets over the course of all the texts and voices in these chapters, our imaginations become more fully attuned to the healing way of Jesus.
The interpreters in chapter three are medical doctors, and by engaging them we notice ways a biomedical lens can influence how someone understands healing and what they understand Jesus to be doing when he heals. Chapter four includes interpreters who honor the experience of disability. Different aspects of the text are highlighted, emerging from their own understandings of bodies and health. In chapter five, I share insights from conversations with pastors from a number of Christian traditions about how they practice healing in their churches and how they connect these practices to their ways of understanding Jesus’ healing activity. Then, in chapter six, I offer some of my own observations on a number of healing texts, finishing with a summary of what I refer to as the Seven Marks of Healing in the Way of Jesus, based on repeated themes in Jesus’ works of healing. I offer these as a guideline for how to develop and evaluate practices of healing in our Christian communities today.
While these chapters will be dealing directly with the interpretation of biblical texts, with biblical scholars as some of the conversation partners, this is not a work of biblical studies in a strict sense. An approach from biblical studies might dig deep into each text, examining it rhetorically and metaphorically, paying close attention to the original language, and how it fits with the immediate context as well as the themes and objectives of the Gospel as a whole. But for the purposes of this book, I am treating the healing narratives more broadly—as witnessed testimonies of how Jesus enacted healing in the lives of people he encountered. I do not treat these texts with the same level or type of detail that a biblical commentary might. Our purposes are different. In this work I remain focused on the happenings within the healing events, paying attention to the healing transformations that take place and how Jesus brings them about. By being immersed enough in these healing accounts as a collection, and the context in which they take place, we find a way forward in creating truly healing practices in the way of Jesus for our present day.
The seventh and final chapter describes a number of concrete practices in congregations, specifically involving people with intellectual disabilities, to give ideas for how some of the Seven Marks of Healing in the Way of Jesus might be lived out in real church contexts. But just as this is not strictly a work of biblical studies, it is also not a how-to ministry book with lots of specific, practical tips for how to become a place of healing for people with disabilities in your particular setting. Instead it offers the beginnings of a bridge: connecting the work being done in the academy (particularly conversations in disability theology and biblical studies) to the actual practices of healing happening in churches. I share these practical examples not because they are paradigmatic for every context but in hope that they will spark continued imagination to new practices as communities become more fully boundary-breaking, radically loving, welcoming those who have been unwelcomed, celebrating of everyone—communities of healing in the way of Jesus.
You will also find some brief reflections spread throughout the book in which Christians, mostly who identify as people with disabilities, share some of their experiences with church teaching and practices around healing. They also share how they continue to think about healing in their own bodies and lives. The diversity of their experiences and reflections offers some glimpses into the complexity inherent in this issue. And for a book dealing with issues of disability, directly including the voices of people with disabilities is essential. Not all of these writers come to the same conclusions, either personally or theologically, but their lived experiences and insights help ground our conversation where it belongs—in real life where actual people do or don’t encounter Jesus through their local communities of believers.
These reflections are all written by people who have not experienced a complete physical cure of their disability, and in some of the cases, are not looking for one. I do not focus on these perspectives because I think physical healing is outside of God’s scope—God is radically free and chooses to transform people in lots of different ways, including, sometimes, bodily cure. But this kind of individual, bodily transformation is how many people in the modern West already tend to think about healing, and it is but a glimmer of what healing in the way of Jesus entails in its fullness. So it felt important to include narratives by people with disabilities that point us toward broader conceptualizations and experiences of healing, so we can be invited to deepen our conceptualizations as well.
One final note: healing is for everyone. Though I focus mainly on healing as it pertains to people with disabilities, this is certainly not the only group of people Jesus wants to extend healing to (and through) today. Many of the insights and practices might also be helpful for others who may be marginalized in church communities for any number of reasons. But since it is people with disabilities who have especially borne the brunt of certain readings of these narratives (and their subsequent practices), and to respect the bodily realities of the actual people Jesus engages with in Scripture, thinking about healing in relation to disability is the focus of this book.
I continually notice needs for healing in myself. My friends with and without disabilities express their own desires for healing. And we worship an extraordinary Savior who spent a huge portion of his time healing people in ways that actually healed. We are called to participate in this work today, to go and do likewise. This begins not by ignoring the healing narratives but by finding the truly healing way of Jesus and then following it. May all of us receive the wholeness Jesus offers and share it with our communities.
Chapter One
BRIDGING THE GAP
OUR CONTEXT AND CULTURE in the modern West is vastly different from the context and culture of Jesus two thousand years ago. So to create contemporary practices based on Jesus’ own practices, we need to bridge that gap of time and place. But before I describe a helpful method for doing that, we first need a sense of just how wide the gap can be. Anne Fadiman, in her acclaimed book The Spirit Catches You and You Fall Down, does a great job of illustrating this as she writes about the life of young Lia Lee.1
Lia Lee’s story is marked by cultural differences and misunderstandings about health and medical care that have tragic consequences in her life and for her family. Lia was a daughter of Hmong refugees from Laos living in California. She began to have seizures during her infancy. One of her early, severe seizures led her parents, Foua and Nao Kao Lee, to seek emergency medical care at the local hospital. From the start it was clear that her parents’ perceptions of Lia’s illness and the type of healing she needed could not have been more different from her physicians’ perceptions. This first visit to the emergency room marked the beginning of several years of clashes between the family’s perspective on sickness, healing, and the body, and the perspective of Western biomedicine, all with ramifications on the treatment of Lia.
Hospital physicians diagnosed Lia with epilepsy and prescribed a complicated regimen of medications with very unpleasant side effects. Lia’s parents, however, identified her condition as qaug dab peg, caused by her soul being lost, translated as “the spirit catches you and you fall down.” As part of the Western biomedical system, Lia’s doctors believed her epilepsy to be a potentially life-threatening illness requiring intensive and sometimes uncomfortable medical treatment to keep her seizures under control. But her parents, though concerned by some of Lia’s more severe seizures, regarded her condition as a mark of distinction, demonstrating a special connection to the spiritual realm and perhaps signifying her vocation as a healer. For them healing would mean consulting a Hmong folk-healer (a txiv neeb) to sacrifice pigs and chickens in an effort to call Lia’s soul back to her body.
Due to these incredibly different ideological starting points about Lia’s condition, the Lees and the hospital personnel rarely understood what the other proposed or why they deemed it helpful. Lia’s illness progressed over a period of several years until finally she lost most of her brain activity and later passed away. The Lees blamed the interventions of Western medicine for the deterioration of her health, while the hospital personnel believed Lia would have fared better if her parents had more closely followed their medical recommendations. Given the constant misunderstandings, it is no surprise that one of the physicians involved in Lia’s case believed that the ideological gulf between the Lees and their doctors was “unbridgeable” and the regrettable outcome was inevitable. He recognized the deep, pervasive chasm between the way he and his colleagues understood bodies and health and the way the Lees understood them, and he felt their viewpoints and concepts were so different that they could never truly understand each other.2
Most of those involved in Lia’s care over the years have admitted that neither side grew to appreciate or even understand the other’s approach and methodology. One of Lia’s nurses likened the conversations between Lia’s parents and her doctors to the myth of Sisyphus, the man condemned to roll a boulder up a hill over and over only to have it roll back down just before he reaches the top. Both the Lees and the doctors would probably have identified with Sisyphus in the analogy—feeling that they kept trying to do what was best for Lia but having their plans and progress continually thwarted by interference from the other.
Fadiman further illuminates this divide by explaining that when a Hmong patient walks into a Western medical clinic complaining of a stomachache, the physician will perceive the problem as something in the body that needs to be diagnosed and treated medically. However, the Hmong patient is actually complaining that “the entire universe [is] out of balance.”3 In Hmong culture as Fadiman describes it, illness is connected to religion, society, economics, music, and all of life—which is hugely different from the individualized, body-focused way those trained in Western biomedicine tend to view it. This returns us to Lia’s physician’s claim that the chasm between two divergent perspectives on illness and healing is unbridgeable and to the vital question of whether he is right.
As a Westerner in the twenty-first century seeking the healing practices of today’s churches to be informed by the healing ministry of Jesus, this is a key issue. After all, in this case there is not only the cultural divide between the West and the Near East—a divide similar to Lia Lee’s situation—but engagement with Jesus means engagement with the ancient Near East. If two cultures existing in the same time period and interfacing directly were not able to understand one another (the Hmong and Western biomedical cultures), what hope is there that a comparable cultural divide compounded by a two thousand year temporal gap might be bridged?
MODELS FROM MEDICAL ANTHROPOLOGY FOR EXPLORING HEALING ACROSS CULTURAL DIVIDES
Without question there are deep differences between the Western culture of biomedicine and the understanding of sickness and healing in Jesus’ context. But unlike Lia Lee’s doctor who believed a large cultural gap like this to be unbridgeable, medical anthropologists devote much of their efforts to just that kind of bridge-building. Their work explores ways to bring wildly different understandings of sickness and healing into conversation.
Ethnomedicine, within the larger discipline of medical anthropology, makes crosscultural comparisons that look broadly at what issues pertain to health in a given context. It pays attention to bodies as well as ideologies, physical life along with social life, and how people understand healing in relation to their body, their family, their larger political context, and the universe.4
A key component of any study of one culture by a member of another, like a modern Westerner exploring the healing work of Jesus, is the acknowledgement that the person studying is an outsider to the culture they observe. Biblical scholar John Pilch uses the term emic to describe “an insider perspective.”5 We are the outsiders seeking this emic understanding in regard to Jesus’ healing acts, to know how those experiencing the events firsthand would have understood their significance. In contrast to emic is the etic understanding—the outsider’s perspective—which refers to how interpreters make sense of the same events in their own cultural terms.6 Since our goal is to shape healing practices in contemporary Western churches that are modeled after the healing activity of Jesus, then as Bruce Malina advises, the dialogue will have to move from etic to emic and back again.7 We will need to be clear about the cultural starting point of particular Western interpreters, explore how those perspectives interact with the very different perspective of the actors in the text, then return to thinking about our modern context and the text’s ethical implications.
The first step for outsiders to gain an insider perspective is to become as clear as possible about their own perspective, and all of the viewpoints, values, emotions, and biases that go with it.8 This is why Western interpreters of the healing narratives need to have a general understanding of the values of biomedicine and the assumptions within this system, to notice when these modern values and assumptions might be impacting how we read the biblical text.9 Then, we must learn as much as possible about the viewpoint, values, and assumptions of the culture we seek to engage.10 Prominent medical anthropologist Robert Hahn calls this intentional listening a key anthropological practice for understanding the viewpoint and perspective of another culture.11
The Gospels especially provide insight into their culture’s perspective because they are emic documents written by cultural insiders giving their perspectives on what was happening.12 Since the Gospels are written in the same general temporal and geographical context as the events they describe, they provide glimpses into how people in that context ascribed meaning to what they witnessed (or heard about) and how they, as insiders, made cultural sense of what took place.13 They are emic documents because these tellings reveal how particular narrators framed and interpreted the healing events through the social and cultural paradigms of their time.
One caveat, raised by sociocultural anthropologist Mark Nichter: cultures are hardly ever monolithic in their viewpoints and practices around sickness and healing.14 Neither our Western culture with the predominance of biomedicine, nor the first-century culture surrounding Jesus, has a fixed, singular set of values and assumptions that everybody shares. Pluralism exists in every community or culture. This is a helpful caution, and why in this project I use more general, widely agreed-upon themes and values both from Jesus’ culture and our own. These brushstrokes are broad enough to be largely uncontroversial in their descriptions but with enough particularity to engage in helpful crosscultural dialogue to construct a contemporary ethic for healing in the way of Jesus.
Story
REV. MATTHEW ARGUIN
London, Ontario, Canada Associate Priest for St. Alban the Martyr and the Church of St. Jude Diocese of Huron (Anglican)
“I admit it. After thirty-three years with CP, three years of ordained ministry, and two years actively thinking about disability and theology, I’m still unsure how to respond to folks who earnestly pray for my CP to leave my body so I can stand up and walk.”
It strikes me how relevant this Facebook post I made two years ago still is, at age thirty-five, with a couple more years of priesthood under my belt. When it comes to my cerebral palsy (CP) I have heard every theological explanation under the sun. I have been told that my disability is a visible sign of the brokenness of the world, a gift from God to help me empathize with those who are excluded and on the margins. As helpful as that might be in the call to ministry, I’ve never been fully convinced that all the inconveniences caused by spasticity are gifts that I particularly want to have. Especially when a sudden noise or tap on the shoulder causes me to inadvertently dump half of my coffee on my lap at 6 a.m. when I just want that sweet, sweet caffeine rush!
I have been told that being born this way was simply a medical mistake, and that God had nothing to do with it. The doctors simply did not cut the umbilical cord in time and as a result I have to live with the consequences.
By far though, the most frequent explanation I have received from folks is that my being in a wheelchair is simply a matter of faith. If only I could believe a little more, have a little more trust in God’s grace and mercy, I could get up, walk, and be healed! I’ll never forget one experience I had while making my way through a local mall. A man with long hair, a beard, and a very large cross around his neck approached and asked: “Do you believe that Jesus Christ is your Lord and Savior?” Initially I had to stifle some laughter, as I felt the answer to this question was pretty obvious given that I was wearing a clergy shirt and collar, but I decided to engage his question seriously, and the following conversation ensued:
“Yes, I do believe that. In fact, you might say I work for him.”
“Do you believe that all things are possible through him?”
“Of course.”
“So if I prayed for you right now, do you believe that he would make you stand up and walk?”
“He might, but I don’t think it’s very likely.”
[Insert confused look on the man’s face here]
“Why not?”
“I think it might be possible that God made me this way, and I’m not sure it’s something that needs to be healed.”
“Oh. OK. Um. It was nice meeting you. Bye.”
As he walked away, I couldn’t escape the feeling that my reply had caused some sort of short-circuit in his faith-logic. Why wouldn’t someone want to be healed? Didn’t I wish that things could be different?
On some days, the answer to that question is yes. Being healed would make my life a lot easier. It would likely mean less hassle in arranging personal care, more ease in attending social events, not to mention saving money on the coffee budget.
Most days though, the answer to that question is no. My life with CP means that I have been able to form bonds with people I would have otherwise never met. From celebrities met at telethons and fundraisers, to the personal support workers that help me with everyday life, none of these relationships would have formed in the same way if the wheelchair were not present.
In my vocation as a priest, I have found that having a disability means that I get to dispel fear for many people. Members of the church who encounter new mobility challenges through age, accident, or other circumstances have been able to see that someone who uses different devices and setups can live a full and meaningful life. It means that people I meet on the street on low-level income find an individual who knows what it feels like to live on less than $1,000 per month in government subsidy. It means that curious toddlers are able to ask: “What happened to you?” and I can answer in a way that both answers their question and lets them know how important it is to try to make friends with someone who looks or sounds a little different.
If I am being honest, my encounters with God in this world are always shaped by my experience, an experience that has always included cerebral palsy. Take that away and I might be a different person entirely. Who I am now is the person whom God has intended, wonderfully and beautifully made. A person who is called to love and be loved in the name of Christ.
DEFINING TERMS AROUND DISABILITY AND HEALING
Members of a society have a shared cultural lens that tells them how to differentiate between a sick person and a healthy one, how a person ought to behave when they are sick, and how to think about the concepts, practices, and social functions around health and health care.15 So you cannot study a society’s “health care system” without taking into account “its social, religious, political and economic organization. It is interwoven with these, and is based on the same assumptions, values and view of the world.”16 So in crosscultural explorations of health and healing, it is vital to pay close attention to the many aspects of community life.
The particularity of health care systems in different cultures is why we must not interpret the narratives of Jesus’ healing by supplying definitions for terms and filling in the narrative scene with meanings from our own contemporary context. The meanings attached to a word like “healing” by someone now and someone in Jesus’ day would not be the same. Modern Western culture has views of medicine and appropriate behavior that are quite unlike those of the ancient Near East. This, as Hahn says, is “in part because they see the world differently, [and] in part because what they see is different, they live in different worlds.”17
To bring clarity to various cultures’ understandings of sickness and healing, many in the field draw on medical anthropologist Arthur Kleinman’s distinction between illness and disease.18 For Kleinman, a disease is what a medical doctor treats—an individual’s sickness described and diagnosed according to biomedical categories. Illness, on the other hand, is what a patient experiences—and includes their personal response and the meaning they attach to what is happening in their body. Accounts of disease see the source and location of sickness within the individual’s body. This is the physically focused biomedical definition of sickness, and it aligns with the medical model of disability that sees disability as rooted in the lack of a certain physical or intellectual capacity.19 While both illness and disease are operative categories for modern people who experience various kinds of sickness and impairment, Jesus is not known to reframe an individual’s paralysis in disease terms by attributing it to a spinal cord injury above the first thoracic vertebra. Illness seems a more apt category in that context.
Since illness is more experiential, and takes into account social factors and culturally constructed definitions as part of the experience, it has more overlap with the social model of disability than does the narrower account of disease. The social model acknowledges that certain limitations accompany certain impairments but that a person is only disabled by these limitations if society is structured in ways that exclude the full participation of people who need to access the world in particular ways. As Columbia University professor Christopher Baswell proclaims, “It is only at the Bodleian that I am a cripple.”20 He writes about how when he uses the British Library, he can move around easily and get the information he needs just like anyone else in the library. However, at Oxford University’s Bodleian Library, at least at the time he wrote the article, he cannot even enter the building (and up its large staircase) without help, not to mention the difficulty navigating once he is inside. So in this case, Baswell argues, it is not his paraplegia that disables him because this remains constant whether he is in the British Library or the Bodleian. But in only one context does he experience himself as disabled. And according to the social model, it is not the state of his body, but the social decisions made about how to construct and organize society that can disable people. The category of illness accounts for such social factors.
Disorder is a third category several anthropologists work with. While disease accounts focus on an individual’s body, and illness accounts additionally consider a person’s immediate environment and social relationships, disorder accounts “focus on broader cosmic forces.”21 Case in point: the Hmong man described in Fadiman’s book whose stomachache is, to him, not a sign that there is a biological problem in his body but instead that the universe is out of alignment. In various contemporary cultures, “people freely admit to being possessed by supernatural forces, to having spirits speak and act through them, and to having had dreams or visions that conveyed an important message to them.”22 A number of Christian communities could be included here. Sometimes these supernatural encounters are considered positive or neutral, and other times they have unwelcome physical or psychological effects (and may be attributed to evil supernatural forces). These adverse effects, whether attributed to a particular spirit or a more general intangible force, fall into the category of disorder. Although this conceptualization of sickness may be difficult to relate to for many modern Westerners, it is a dominant paradigm for first century Jews in Jesus’ context. These categories are helpful to compare how modern Western medicine and first century Jews understand sickness, and to articulate where the differences lie.
To accompany these more precise terms for sickness, anthropologists also draw a distinction between “curing” and “healing.”23 Simply put, curing is to disease as healing is to illness (or disorder). Curing focuses on removing the disease from an individual’s body, but healing is “a sociocultural as well as a biological process.”24 So when sickness is understood to have interpersonal, social, and spiritual dimensions, as in Jesus’ context, ignoring these aspects in the healing process would be deeply insufficient. For this reason, in many non-Western health care systems where the understanding of sickness is broader than the biomedical definition, healing includes attention to these holistic dimensions of a person’s life.25 Healing practices reflect the characterizations of sickness within their broader cultural context.
The key point here is that what we count as the “healing” in a Gospel narrative is hugely dependent on how we first define “sickness.” Drawing from the anthropological categories of sickness, if we read a healing narrative through a disease-based understanding, like that of biomedicine or the medical model of disability, healing would focus on curing an individual’s body. However, if sickness is framed as disorder and/or illness, or with an understanding closer to the social model of disability, then healing would address broader social factors. As we’ll explore more in the next chapter, views of sickness in Jesus’ culture tended to be more illness- and disorder-focused, and less disease-based than most contemporary Western cultures.
This does not mean bodily healing is irrelevant. In Scripture, Jesus did indeed cure individuals’ bodies. Some people today also describe ways God has miraculously cured their bodies. Not to mention, many people with various impairments and disabilities at times opt for medical intervention and sometimes appreciate the resources and perspectives of the medical community to address any number of bodily concerns. What happens in and to physical bodies matters—both in the Bible and today. But conceptions of health and healing that focus only on an individual’s physical, bodily characteristics are inadequate, as are those that ignore someone’s physical, bodily reality. Attending to someone’s body/mind on a physical level and attending to how our cultural and social structures impact diverse bodies/minds differently are not mutually exclusive frameworks. By keeping hold of multiple perspectives, we expand our notions of health. This enables us to notice more ways Jesus offers healing to the people he encounters.
Not to mention, interpreting the healing narratives by focusing only on the body of the individual is not commensurate with the understanding of sickness in the biblical context. At the same time, we cannot simply read the biblical narratives through the lens of the social model of disability. This model, while better accounting for the illness category of sickness than the medical model, is nevertheless a modern paradigm built on contemporary understandings. Plus, it ignores the category of disorder altogether, which is a central way sickness is viewed in the first century Mediterranean region. As we examine interpretations of the healing narratives through these various understandings, we can note places where modern understandings or categories influence what we perceive to be the “healing” that happens in each account.
THE CULTURE OF BIOMEDICINE
As we move forward in reading the Gospels today, we must be as clear as possible about the particularities of the understanding of health that many modern, Western interpreters are especially informed by: biomedicine. Getting clear about biomedicine is crucial for two reasons. First, it allows us to determine where interpretations of Jesus’ healing narratives may be unhelpfully influenced by these modern, Western understandings of sickness and healing. Second, it allows us to take this reality into account as we construct an ethic of healing that will be carried out in a context that operates with biomedicine as a primary lens.
But to be clear, biomedicine is not the only medical paradigm operative in the West. For as Hahn points out, “not one, but many differing and inconsistent beliefs exist in every society,” and even within its individual members.26 Plus, factors like income, gender, race, and social status often lead to disparities in accessibility of health care services and ways of interacting with society, which results in multiple cultures and understandings about health and healing within any given society.27 So “there is really no such thing as a uniform ‘Western’ or ‘scientific’ medicine.”28 Especially since so many folks in the West, and increasingly so, turn to alternative medicine and other kinds of non-biomedical healing methods to treat all kinds of conditions.29
Still, the mere fact that we tend to call these non-biomedical forms of treatment “alternative” medicines points to the dominating force of the biomedical perspective in our culture since they solicit the question: “Alternative to what?” In the modern West, unlike in Jesus’ context, the biomedical framework is assumed. Even though “alternative” or “unconventional” therapies may be quite conventional for many patients seeking help in the West, biomedicine remains the key reference point for how Westerners tend to conceptualize sickness, healing, and health care.
With the caveats that (1) biomedicine is not the only paradigm of healing in the Western world and (2) even biomedicine itself is practiced diversely, still several characteristics are widely cited as typifying this dominant orientation in the West. Those relevant to our exploration are its focuses on individualism, objectivity, and increasingly narrow areas of expertise.
Like the medical model of disability, biomedicine views an individual person’s body as both the location of the sickness and the focal point for healing. This understanding reflects the individualism especially prevalent in the United States.30 A “basic premise” of the biomedical perspective is an “emphasis on the individual patient, rather than on the family or community.”31 This is seen in Western culture’s increasing “medicalization,” where sicknesses that are at least partly caused by social factors like “job stress, marital problems, and abuse, are increasingly treated as medical conditions so that their social origins are not addressed.”32 If a young woman was working for a chauvinistic boss in a situation causing her incredible stress, and as a result she began to have high blood pressure, a typical doctor would see the high blood pressure as the problem to be addressed. The stressful work environment would likely be cited as a contributing factor to her condition, but the blood pressure and not the broken social environment would be what the doctor sought to heal. In the biomedical perspective, sickness is a biological disturbance in an individual body, so healing is directed toward individual bodies.
An orientation toward individualism in biomedical culture is also evident in laws in the United States about who may determine the medical treatment a patient will receive. Except in cases where the patient is not considered intellectually capable of making these choices, “biomedicine generally recognizes only the individual as the center of care and decision making power.”33 But Erickson points out that this is not the way every culture approaches the issue. “Many cultures have a more collectivist approach to social organization and to therapy management and decision making about patient care.”34 Jesus’ context, unlike biomedicine, is such a culture.
Another value in the culture of biomedicine is scientific objectivity. “Among all the ethnomedicines of the world, biomedicine is distinguished by its insularity from the subject of its work.”35 The relationship between patients and physicians, especially in hospital settings, is typically one of formality and distance, where conversation is brief and professional, and good treatment is expected to be fully rational and free from much emotional involvement.36 Since physicians focus on disease, sometimes patients’ identities are even conflated with their sickness and they are referred to by their diagnosis as opposed to their name (e.g., “the carcinoma in the third bed on the left”).37 The definition of sickness is rooted in biology, so the patient’s particular cultural viewpoints are not a significant factor for the treatment process. This was evident in the case of Lia Lee. A patient’s own illness description is taken into account, but they are more fully trusted when it is verified by objective, observable signs of sickness.38
Finally, biomedicine has become increasingly atomized, and many of its healing practitioners have very narrow areas of expertise.39 Compared with the traditional Hmong view of sickness and healing that involves the whole person, their relatives, community, and the entire visible and invisible universe, biomedicine’s focus on the lone individual is paper-thin. The field of public health does think more holistically about social factors that influence people’s health, but in many parts of the medical system the “focus is less on the actual patient, than on a particular diseased organ, system, group of cells, or bodily part.”40
