Stirling Prize for Best Published Work in Psychological Anthropology, Society for Psychological Anthropology
The first time I interviewed Andrena was in the main lobby of a large urban hospital. A cavernous space. Strangely dark, even formidable. Later I could see that the gloom had its comforts. A good place for quiet crying, or for staring into nothing. High ceilings, clusters of permanently fixed plastic chairs lined up in rows of three or four, or set together in L shapes. Chairs as neutral as could be, in tones of beige and practical brown, placed neatly on the wall-to-wall gray carpet. Some leafy potted plants (plastic too, but the realistic kind) helped divide the room into smaller waiting areas. The lobby always felt empty, odd for a hospital full of children. At one end, almost unnoticeable, was the receptionist's desk-not the busy center of this clinical space, as one might expect, but far away, giving the impression of a waiting room with nothing to wait for. Of course, I could have some of these details wrong. This interview took place many years ago, the fall of 1997, and the hospital was redecorated two years later.
I didn't mean to talk to Andrena in such an anonymous place, but where could I go? This was new research in a new city. Sometimes you can find a cozy enough corner even in a big hospital, but I didn't know my way around. And Andrena's very ill daughter was lying in a room three floors up, so Andrena was not about to go far. I had met her only once, a week earlier in her daughter's room on the east wing. I was introduced by the friendly speech therapist who thought Andrena might be willing to participate in the study my colleagues and I were doing. When I saw Andrena that first time, she was sitting on a chair, holding the hand of her daughter, a little girl of four and a half whose shaved head was barely visible above the white sheets of the bed. The small half room was jammed with people. People standing, sharing chairs, leaning against the radiator or a wall. The child's father, a grandmother, an older sister, an uncle, a cousin. Before we entered, the speech therapist told me that the parents were separated and Andrena was the one to ask. After some quick introductions, I directed my attention to her. To my surprise (her daughter looked so frail and her mother held her hand so tightly), Andrena smiled and agreed immediately to participate. "Sure, sign me up," she said. "I'd be glad to help." I left a few minutes later with the plan for our first interview.
So there we sat, Andrena and I, in the twilight of that lobby, diagonally faced in our plastic chairs, my tape recorder perched between us. There is one thing I have noticed about interviewing people in the crisis of life. Many of them don't need much in the way of pleasantries. Time has changed its speed; it has become concentrated, portentous. It may be too fast or too slow, but it is never luxurious. Better, then, to get straight to the point. Andrena was one of those, I could see, who wasn't in the mood for leisurely opening remarks. "So," I said, "can you tell me the story of your daughter's illness up until now? Just begin at the beginning, wherever that might be for you?" And then she started to talk.
She talked for an hour and a half, with very few questions from me, and there were no wasted words. One episode of that first long story offers me a beginning too. The more I have considered it over the years, the more it has haunted me, or perhaps beckoned me. After nearly a year of struggling to find out what was wrong with her child, who was growing increasingly ill, Andrena finally got a diagnosis. The relief at being taken seriously by clinicians was quickly replaced by the terror of what she found out. Her daughter had cancer, a brain tumor. As if that news weren't terrible enough, she was pulled aside by one physician who announced that the particular type of cancer her daughter had was "the worst kind." Here is how Andrena put it:
This one doctor, a lady doctor, she came to get me to explain what they were gonna do ... And she came and she took my daughter and myself to this one room. And she really-Lord, she had me going crazy because she told me, she said, "Oh, I'm so sorry." I said, "So sorry? Did you hear something else?" And she said, "Well, you know that's the worst one that a kid could have. It's the highest-risk kind." And I said, "Oh my God!" I started saying, "Oh, no. I'm dreaming. I'm dreaming. I'm dreaming." I just kept saying, "I'm dreaming," 'cause I was picturing it was, like, it's not real. This is, like, something on TV or something...
Her nightmare offers a central image for this book.
Andrena's nightmare seeped through the whole of her life, and, as she gradually discovered, there was nothing to do but learn how to navigate in it, even learn to make it a new kind of home, a home where she struggled to hope. Hope offered another sort of dream, an intimation of possibility for a better life even in these grim circumstances.
This book is a meditation on hope grounded in a thirteen-year ethnographic study of African American families-parents like Barbara-caring for children who have severe and chronic health problems or disabilities, as well as the clinicians who serve those children. Hope, that "waking dream" as Aristotle called it, concerns imagined futures (Miyazaki 2004; Crapanzano 2004). Its direction is toward what may come to pass. It cannot be predicted-it is a future of "what if." Paradoxically, hope is on intimate terms with despair. It asks for more than life promises. It is poised for disappointment. Here is how the French sociologist Henri Desroche concludes his consideration of hope. Citing Roger Bastide, he offers this definition: "just a simple pause on a long path that stretches towards who knows what horizon, that retreats with every step we make toward it, towards its promise of light and clarity" (1979:171). With even darker irony, Desroche continues: "Hope as it is drawn by Kafka: 'The Messiah will come only when he is no longer needed. He will only come one day after his advent. He will not come on the day of the last judgment, but on the day after'" (1979:177).
Hope as an existential problem takes cultural and structural root as it is shaped by the poverty, racism, and bodily suffering endemic to so many of the families I write about here. For the people in this study, especially the parents, hope emerges as a paradoxical temporal practice and a strenuous moral project. Biomedicine offers no cure. For many children, the prognosis is bleak. Thus cultivating a hopeful stance is paradoxical; it involves an ongoing conversation with embittered despair. To hope is to be reminded of what is not and what might never be. Family members speak of the call to hope as a moral call, bound up in views of what it means to live a good life, to be a good person. Many have spoken repeatedly about the need to hope, and especially about working to have the "strength" to hope, even when times are hard. I have heard countless conversations where family members and friends encourage one another to keep up their hope. Why is hope so important? Why is it required? What kind of vision of reality does it offer? I could quickly see that it was not the same picture clinicians often cautioned against; it has rarely seemed to me something as simple as delusion or denial. For these families, hope has represented a stance toward reality that requires careful cultivation.
While clinicians and their voices appear throughout this book, my primary focus is on the parents (fathers at times, but especially mothers and grandmothers), who care for these children and work to negotiate health care with clinical institutions. The families I focus on are those I know the best personally, people whom I have seen in many contexts over the years and whom I have come to care so deeply about that my relationship with them has changed how I see the world.
Andrena's news about her daughter's cancer brought with it not only fear but, as we shall see, an imperative to hope in the face of that fear, and in the face of an unknown future that stretched in front of her. I will consider dreaming that comes when you might least expect it, the terrifying nightmares that serious illness or tragedy can precipitate. Even more, I will consider what may be done with such nightmares, the work to make them habitable, to find within their terrifying terrain quieter moments, even small lush pleasures. Andrena and her daughter settled on the couch, watching Disney's Pocahontas for the twentieth time, illness temporarily at bay. A trip to the beach on a hot afternoon while her child splashes in the waves with her cousins, a four-year-old like any other. A quiet joke shared with the oncologist when the latest MRI looks better than expected. Her daughter waking unexpectedly from a coma as Andrena prays that God will give her more time to say goodbye. These dramas, large and small, constitute the narrative shape of hope, hope that is not merely cherished or passively received but actively cultivated, practiced.
Perhaps it is the sheer level of suffering that has made this practice of hope stand out in such a marked way. Even in cases where a child's diagnosis is not life threatening or especially physically dangerous, the sheer chronicity of the situation has brought its own dangers. There are no simple solutions. Living with any significant disability, especially when it is coupled with poverty and racial stigma, can be grim work. From one view of reality (a "realistic" perspective), it is, in fact, cause for despair. And despair is precisely what families fight against. They see despair not as realistic but rather as having its own kind of delusion: a comforting delusion that nothing more is required, that the future is fated and they can simply "give up." (They sometimes worriedly attribute this perspective to the clinicians who treat their children.)
How is it that the families and clinicians I speak about here confront this paradox of hope? I am especially interested in the families on this matter, for they, more than the clinicians, struggle with it: How to cultivate a practice of hope that is bearable, despite its elusive promises, its retreating horizons, those darkest times when the suffering is so excruciating that any advent, any salvation, is already too late? How to find a way to hope that will be supported by clinicians and in clinical settings where expensive or even adequate care may be denied-both realities of contemporary health care for many Americans?
Hope as a Paradoxical Border Practice
When it comes to serious illness and disability, hope is a familiar topic. Many anthropological and sociological studies have emphasized the disruption and despair--the lack of hope or struggle for hope--that can accompany chronic and serious medical conditions. Scholars have explored the cultural shape of hope in a variety of contexts, examining the way patient, family, or clinician views of hope "articulate ... with a society's cultural interpretation of hope" (M. Good et al. 1990:60). Having to adopt an optimistic or hopeful attitude even when the prognosis is grim, as is sometimes culturally required, can put tremendous burdens on patients or family caregivers. Cultural contexts also shape patient-clinician communication about hope-often a fraught topic. Clinicians, too, struggle with how to maintain their own hope and how to convey and "regulate" the hope of their patients: How to give patients a "just right hope"? How to deal with a patient's "denial"? How to help patients find new things to hope for in their future even without the possibility of any medical cure?
The rise of new biotechnologies has provoked new reconsiderations of social hope and clinical care. On the one hand, emergent technologies have helped to fuel health disparities between rich and poor on a global scale, a phenomenon described by some scholars in classically dystopic language. Technology emerges here as a kind of Frankensteinian monster (Lock 1997:238). But the development of innovative biotechnologies has also produced a much more optimistic discourse of hope among other scholars, a hope that has linked forms of democratic and political processes to science and technology itself (Haraway 1997; Rose 2007).
My own starting point for a consideration of hope is grounded in the lives of particular persons and intimate moments of family and clinical life. I consider hope as located not primarily within biotechnical practices or dominant discourses that engender optimism or tragic pessimism (depending upon one's view) but rather, first and foremost, in highly situated practices of people struggling to live with chronic medical conditions. Hope most centrally involves the practice of creating, or trying to create, lives worth living even in the midst of suffering, even with no happy ending in sight. It also involves the struggle to forge new communities of care that span clinical and familial worlds. This is why I have chosen to speak of hope as a practice, rather than simply an emotion or a cultural attitude.
I will consider the practice of hope not only as a personal struggle of parents like Andrena but also as a critical aspect of the health care encounter. Poverty and race figure largely into it. I explore how a group of African American families, many of them poor, traverse clinical spaces when their children have serious, chronic, and sometimes critical medical conditions. These navigations through the fog caused by all-consuming suffering are made more menacing by the uncertainties and dangers facing marginalized minorities who seek care in the health systems of the United States. I also consider these navigations from the perspective of clinicians who at times find themselves confused and uncertain about how to provide care or how to connect with families far removed from their own class and cultural background. Hoping is no mere personal affair when it comes to health care in a multicultural urban hospital. It is a border activity. Thus the central question for this book is: How is hope cultivated in a border zone? How does this border practice shape hope for parents, children, and clinicians?
It has become quite popular to talk about life on the borders. Borderlands are perhaps the central figure of the contemporary social imaginary. Across a whole range of disciplines, the recognition that social worlds are porous, that boundaries are fluid and contested, and that objects and people are bound together or travel in all manner of unexpected ways continues to inspire our imagination and provoke our attention. In some cases, this has meant a literal focus upon a particular geographic spot, cartographically defined, where one can pay special attention to sites of heightened commerce among actors who are culturally diverse-large, multicultural urban areas, for instance, or the spaces around national boundary lines, zones of war, refugee camps, travels of the displaced across tenuous political boundaries, and the like.
But borderlands need not be so visible on any map. They may also designate spaces defined by practices that bind people together who otherwise wouldn't belong together. It is in this practice-based sense that I am using the term borderland. It designates that flexible space in which healing is carried out, not only by health professionals, but also by patients and families. The narrative acts I will speak about help to shape this borderland and reveal the fluidity of this space and its connections to geographical and institutional sites that are far removed from any clinic: homes, churches, even Chuck E. Cheese and Disneyland.
In this book, I focus on the task of creating borderland communities and how deeply the practice of hope is bound up with this struggle. I approach this problem through a particular theoretical lens that I call narrative phenomenology. Briefly, I have three overall aims. One is an analysis of hope as a clinical border practice, based upon this long-term ethnographic study that has focused upon the multiple perceptions surrounding illness, disability, and healing held by family members, clinicians, and the children they care for. A second objective is to offer a narrative phenomenology of practice that not only recognizes the macro structural dimensions of our social existence (the way discursive regimes are embodied and played out in everyday social practice) but also foregrounds the personal, intimate, singular, and eventful qualities of social life. A third, related ambition is to demonstrate an ethnographic methodology-narrative phenomenology as a kind of research method-that is deeply intertwined with the narrative framework I present.
This is a mixed-genre work, a philosophical anthropology that has its abstract theoretical moments but is also filled with stories. It is primarily through the stories that philosophical-perhaps I should call them existential-questions are raised, questions about the human condition and the place of suffering and hope in it. I will focus upon small moments of everyday life, paying close attention to a gesture, a phrase, an argument, a joke-the pervasive, largely invisible stuff of ordinary social interaction. And in doing so, I will try to paint portraits that are reflective of the personal and social histories in which people live. In that sense, this is a book about the intersection of race, chronic illness, and clinical care in the United States. Yet I do not intend this work as some kind of definitive race story, or a book that speaks only or uniquely about the experiences of African Americans. While the cases I present are sometimes marked by features that make them singular to the African American experience and to the construction of race or disability within clinical encounters, my intention is to open an existential window onto the relationship between suffering and hope, exploring hope as a practice at once personal and communal. I mean to offer "concrete universals": that is, particular people and events that paradoxically, in their very concreteness, imaginatively reveal something about the struggles of many people, including ourselves.
The Lobby as Cultural, Historical, and Imaginative Space
I opened my book in a lobby, a space I find especially fitting because I am going to tell travel stories, stories about struggling to create homes where no one lives, to make families (or at least travel companions) out of strangers. I will be writing about "dwelling-in-travel" (Clifford 1997:2), a space of "friction"-of "contingent encounters" and "interconnection across difference" (Tsing 2005:4). When James Clifford meditates on travel as a "'chronotope' of culture" (1997:25), he gives us an image: the hotel. Hotel "as station, airport terminal, hospital: a place you pass through, where the encounters are fleeting, arbitrary" (1997:17). However Victorian the overtones (conjuring up, as Clifford remarks, gentlemen travelers from an earlier era), it is a useful image. I have it a bit in mind when I consider the lobby. Not a bourgeois chandelier sort of lobby but just the kind you find in bus stations, airports, and, of course, hospitals. If urban hospitals quintessentially exemplify culture as a border zone (as I shall argue presently), then their lobbies offer a front-seat view of culture as a boundary space, a place intended to be temporary. Leaving there, after all, is the primary point.
When you are in a lobby, chances are you are waiting. And not comfortably either, in the lobby I have in mind. Poor and even middle-class families who have very sick children spend quite a lot of time in such lobbies. There is a great deal of waiting to be done when caring for the sick, or in being sick yourself. Lobbies are supremely liminal spaces. You aren't even visiting yet. You are only waiting for a visit. Lobbies, even when well guarded, don't exactly belong to anyone (a notable no-man's-land). In a hospital, they are familiar frontiers. Everyone passes through them from time to time, unlike its many secret spaces where only a few are allowed to enter. Frontiers, by and large, precipitate "encounters between strangers of whom none come to the meeting with the permission to set the agenda in their pockets" (Z. Bauman 1999: xlix). I would not go so far as to claim that all of cultural life can be summed up by this trope. "Motility" and "non-rootedness" may not exactly be the "'primary reality' of culture," as some suggest (Z. Bauman 1999: xlv). But they very pointedly mark the cultural scene I investigate here.
In exploring hope as a border practice, I rely upon a conceptual reframing of culture that has special salience for my purposes, one that has emerged over the past few decades as part of the refiguration of culture, a shift from anthropology's traditional task of elucidating "the crystalline patterns of a whole culture" to a focus on "the blurred zones in between" (Rosaldo 1989:209). The lobby provides such an apt trope because culture has come to be imagined as a site of travel. It is the name of a land one passes through as much as lives in, characterized more by hybridity and liminality than by any uncomplicated citizenship. As a scene of travel, it is attended by experiences of estrangement and displacement. Out of this has come a new kind of social common sense, one that abandons "old ideas of territorially fixed communities and stable, localized cultures" in favor of "apprehend[ing] an interconnected world in which people, objects, and ideas are rapidly shifting and refuse to stay in place" (Gupta and Ferguson 1997a:4). In this resituating, culture emerges more vividly as a space of encounter than of enclosure. Or, put somewhat differently, enclosure itself is increasingly treated as one element of encountering and-very often-conquering spatial practices. But borderlands are not totalizing; rather, they are "spaces of contradiction and disorder, as well as sites of cultural fluidity, identity making, and diverse and marginal forms of citizenship" (B. Good et al. 2008:22). Border crossing is a necessary, if treacherous, business in such fluid spaces.
The lobby, with its in-between, transient character, is metaphorically apt in a second sense. The travel stories I tell concern encounters that have their temporal place within ever larger narrative horizons: they are historical moments. They belong as episodes not only within personal, familial, and institutional lives but within national and global ones as well. These travel stories are moments within a colonizing history that spans (even conservatively) three continents and three hundred years. Two historical horizons have particular salience to my topic. One is the rise of modern Western medicine itself, a story that has been told and retold and made especially famous as a dystopic narrative in Foucault's work.
A second history, covering a roughly similar time period, concerns the colonization of the Americas and the importation of African slaves to work on newly founded plantations. The construction of the black body is, of course, an integral part of America's cultural history. Race, and quite specifically racial designations that divide black from nonblack, are "written into daily lives and experience in America" (Goldberg 1997:10), essential to the making of the modern American subject. As we know, these histories have intersected in an especially pernicious way for African Americans. Out of the development of a slave society in North America emerged an accompanying "scientific" medical perspective that became a tool for defining the black body as, essentially, biologically Other compared to the white one. Medicine and the emerging biological sciences helped to imaginatively construct the black body as particularly frail and needy.
This vaster historical race story is vividly present in my metaphorical lobby because so many hospital encounters I describe are encounters across racial divides where participants see themselves or find themselves designated as both culturally and racially Other. The history of slavery, race, poverty, and illness lives as a menacing shadow for the families I write about. While I will describe many clinical encounters that reveal its centrality, the history itself will appear only as a shadow. Not all stories can be told at once or with equal clarity. Thus this vaster history is only intimated, gestured to, as I cast my eye on more intimate and immediate scenes. But though it is not explicitly detailed, it is palpably present. It can, for example, be heard in the voices of parents who still cannot shed this legacy of racism or escape the play of race in clinical care.
This practical problem that families and clinicians face speaks to another key feature of culture reconceptualized: the interpolation of cultural difference and culture making as mutually constitutive events. "Culture," Lila Abu-Lughod writes, "is the essential tool for making other" (1991:143). The production of cultural difference becomes acutely visible in border zones, creating charged and antagonistic spaces. They are where cultural politics play themselves out, in a particularly heightened way, where the cultural is represented as difference. Culture emerges as a "contested category and ... site of ideological and political struggle" (Mahon 2000:469-70). As many have argued, cultural identity is produced only in the moment of cultural differentiation. Postcolonial, feminist, and race theorists have led the way in much of this theorizing of the borderland. Cultures, Homi Bhabha declares, "recognize themselves through their projections of 'otherness'" (1994:12). The creation of difference is a largely negative capacity, a pernicious cultural virus that turns others into Others.
Travels in Clinical Border Zones
The urban hospital, as I have already suggested, is a quintessential cultural border zone. Because of its cosmopolitan nature, the practice of hope in clinical contexts is very much connected to the problem of understanding one's fellow actors, one's interlocutors. It is not difficult to see that such a border space will be rife with misunderstanding. In border zones, actors find themselves uncertain about what others are up to and struggle to be understood by their interlocutors. While much of life may be fraught with ongoing misunderstandings, interpretive trouble is particularly pernicious in clinical spaces where a great deal is at stake.
Much of the work in medical anthropology has explored transactions within biomedical encounters marked by cultural confusions and misunderstandings-border talk, in fact. Even where there are no differences of race, ethnicity, language, nationality, social class, gender, or other obvious social markers, the gulf between those who inhabit what Paul Stoller (2004) calls the "village of the sick" and their professional healers is, in itself, enormous. We can see this with poignant clarity in physicians' tales of their own illness experiences, and how far these take them from the safety and familiarity of hospital life experienced from the "other side," the land of the well. And of course it is especially and ominously present in the encounters I describe in this book, where families and patients do, indeed, come from social worlds that are distant from those of many of the key health professionals who treat them.
If the practice of culture is so bound up with a practice of Othering, of identifying cultural difference in a thousand subtle and unconscious ways, this is of special importance in health care. In clinical encounters that cross race and class lines, worries over being misread constitute major threats. Misunderstandings are magnified to intense proportions in situations characterized by both cultural difference and high stakes. Cultural identities constructed by race, class, gender, and other potentially stigmatizing markers take on profound meaning here. After all, hospitals are places where things are very much at stake for many of the social actors. What might be a small slight or a confusing conversation in another context can take on enormous importance under these heightened circumstances. To feel slighted by one's doctor when one is seriously ill is not the same as being slighted by the grocery clerk.
Traveling in such a clinical border zone means confronting cultural difference. In the world of clinical encounters, the patients or families are most obviously travelers in the "exotic" land of the hospital, where they encounter unfamiliar languages, rituals, and expectations about how to act their part. But these travelers also confront the problem that they may appear unfamiliar or exotic to health professionals. Worse still, they may appear as "familiar strangers," prejudged and slotted in categories where they are dismissed, invisible, neither known nor deemed worth knowing. Parents may emerge as "won't step up to the plate" fathers or "not too educated" mothers, characterizations that challenge everyone's ability to create partnerships necessary for effective care.
Perceptions of difference can precipitate a number of charged scenarios. At its polar extreme they can lead to what Michael Taussig speaks of as the "horror story of hospitalization" in which "the clinical situation becomes a combat zone of disputes over power and over definitions of illness and degrees of incapacity" (1980:9). By contrast, border encounters in hospitals can lead to imaginative borrowing, syncretic inventiveness, the creation of common ground; they may have their creative and even generous moments (A. Frank 2004). These dramatic possibilities are made more complex precisely because this is travel in border territory. This means that it is not always clear just whose territory it is. When is one the traveler and when is one on home ground? How can groups who mark themselves as different come to share a territory that is commonly traversed? It may be true that clinical spaces "belong" to the health professionals much more than to patients and families, but things get more confusing when it comes to the patient's body. The body itself emerges as "border territory" in the health care encounter. Sometimes this sense of body as borderland is a central part of the illness experience (Hahn 1985:87-98).
Cultural travelers like Andrena suddenly find themselves faced with trying to understand and navigate the foreign world of pediatric oncological care. She has new languages to learn (languages of disease, of insurance forms, of rehabilitation goals, of X-rays), new social spaces to traverse (radiology labs, oncology reception desks, physical therapy mats), new roles (the patient's mother, the home co-therapist), and new technical competencies to master (how to administer chemotherapy shots to her daughter at home, how to do the occupational therapy home program, how to become deferential to novice clinicians even when she has acquired better mastery over some of these technical skills than they possess).
Most complex, she has the task of trying to create effective partnerships with a vast array of health care providers, from oncologists to lab technicians to hospital receptionists. She must cross race and class lines to do so. This is a task fraught with interpretive challenges. Yet it is one Andrena often effectively confronts. Her successes illustrate the hermeneutic proposition that misunderstanding is not the end point of dialogue but its necessary beginning. While there are countless instances in this book of misunderstandings that only deepen as parents and clinicians attempt to communicate and negotiate with one another, there are other moments that reveal this dialogical possibility of movement toward understanding and the creation of common ground.
The efforts of many of the parents and clinicians point to how they can offer spaces for cultural imagination and reinvention. Cultural difference and cultural production may go hand in hand, but in these marginal and contested spaces, to follow Bhabha's provocations, culture reveals itself in its fluidity as well. For it is at the "significatory boundaries of cultures, where meanings and values are (mis)read or signs are misappropriated," as Bhabha (1994:34) writes, "that culture offers itself up for thought." And "friction" sometimes turns out to be the mother of invention (Tsing 2005). "The clash of power and meaning and identities is the stuff of change and transformation" (Ortner 1999:8).
While calling upon contemporary postcolonial and race therapists to consider border zones, I also return to an older theoretical conversation within phenomenological hermeneutics to investigate how Othering occurs in clinical encounters and how it leads to the creation of dramatic experiences that may instigate cultural reinvention. In doing so, I foreground the dialogical nature of encounters (and experience as a kind of "dialogue with Otherness," to paraphrase Hans Georg Gadamer ), in order to investigate such everyday matters as the preunderstandings that actors bring to encounters and the dangers and failures of experience in charged moments that only serve to harden prejudgments and prevent any creation or recognition of mutuality. I find this philosophical approach especially fruitful in investigating the politics of hope in clinical border zones because experience is accorded a privileged place in the analysis. As someone who wants to speak of border spaces not only as shared by discursive formations but as produced through the intimacy of personal and intersubjective experiences, this theoretical framing serves me very well.
Blues Hope as a Border Practice: Political and Imaginative Landscapes
The border zone as a space of Othering has been especially consequential for African Americans. In 1970, Ralph Ellison offered this insightful analysis:
Since the beginning of the nation, white Americans have suffered from a deep inner uncertainty as to who they really are. One of the ways that has been used to simplify the answer has been to seize upon the presence of black Americans and use them as a marker, a symbol of limits, a metaphor for the "outsider." ... But this is tricky magic. Despite his racial difference and social status, something indisputably American about Negroes not only raised doubts about the white man's value system but aroused the troubling suspicion that whatever else the true American is, he is also somehow black. (quoted in West 1993:3)
The idea, intellectually pervasive within contemporary social theory, that race is a matter of cultural (and politically defined) convention is rendered especially powerful by African American writers who have talked about how they have come to see themselves as "black" or "negro" or "colored" or "nigger" only through the eyes of others, white others in particular. "I remember the very day that I became colored," writes Zora Neale Hurston in a 1928 essay entitled "How It Feels to Be Colored Me" (quoted in B. Johnson 1985:319).
The powerful African American experience of being Othered has not only brought a history of racial shame and political and economic oppression. It has also provided another legacy: an "anticipatory imagination" that is tied both to struggle and to community building. One could call it, following Cornell West's (2008) description, "blues hope." Here, we can see that my metaphorical lobby offers something else, figuratively speaking. It intimates an imaginative space marked by temporal uncertainty. One waits in a lobby not only for a person, a place, an activity, or some news, but for the future itself. Temporally, lobbies are spaces of anticipation, of the not-yet. In this sense, they suggest another kind of border zone, what Vincent Crapanzano refers to as an imaginative frontier. Such frontiers "extend from the insistent reality of the here and now into that optative space or time-the space-time-of the imaginary. It is this realm that gives us an edge, at times wrenching and painful, at times relieving and pleasurable, on the here and now in all its viscous immediacy" (2004:14). As Crapanzano notes, while scholars have been very engaged in considering political and global borders, they have been neglectful of imaginative horizons, and especially of what he calls "anticipatory imagination" (2004:19).
This is especially unfortunate for the study of suffering, which demands-or ought to demand-attention to imagination. Hope lives in an uncertain place, in a kind of temporal lobby. It points us toward a future we can only imagine. This imaginative and uncertain space of hope becomes acutely visible in the African American experience.
In a book published a few months before Obama's election, West put it this way: "America finds itself looking to its blues people again to provide vision to a nation with the blues. That is a source of hope. Yet hope is no guarantee. Real hope is grounded in a particularly messy struggle and it can be betrayed by naïve projections of a better future that ignore the necessity of doing the real work. So what we are talking about is hope on a tightrope" (6). An African American vision of hope that is not easy commitment to a "blind optimism" but an arduous struggle against fearsome obstacles has become part of a national story, though one often hidden from public sight. This "blues" vision of hope that West speaks of has recently been given a particularly public face because of the election of President Obama. The rhetoric he used and that came to surround his campaign, while specific to a particular event in American history, is remarkably useful in shedding light on something enduring in America-its complex love affair with hope itself.
Hope, as many commentators have noted, has historically been a dominant theme in American life. In its simplest and most naive expression, Americans have long been associated with a national insistence on taking an optimistic stance toward the future. Every American is familiar with an American Dream that promotes an "against all odds" mentality and insists upon a "you can be anything you want to be" cheeriness. This cultural stance has been blamed (with good reason) for rampant individualism and a blind unwillingness to accept structural inequalities produced along class, race, gender, and ethnic lines. This secular political and economic dream is also heavily marked by America's religious legacy, particularly its Christian heritage, in which hope has figured as a key virtue, one of the three (along with faith and love) that constitute the bedrock of espoused Christian values.
A "can-do" ambition, the insistence on "not sinking in the world" that de Tocqueville had already identified in the nineteenth century as America's primary cultural directive, might seem to express America's only vision of hope. Yet a more subtle ethical and relational picture of hope is also part of the American tradition, one that has particular roots in the African American experience and its Christian traditions. Obama's rhetoric provides a vivid illustration. In his watershed 2004 keynote address to the Democratic National Convention, Obama distinguished hope that is merely "blind optimism" and "willful ignorance" in the face of social problems like unemployment and health care from a hope that is "more substantial." He begins his elaboration of this "more substantial" hope with the African American experience, which he then seamlessly links to the struggles of other Americans: "It's the hope of slaves sitting around a fire singing freedom songs; the hope of immigrants setting out for distant shores; the hope of a millworker's son who dares to defy the odds; the hope of a skinny kid with a funny name who believes that America has a place for him, too." He goes on, to thunderous applause: "Hope in the face of difficulty, hope in the face of uncertainty, the audacity of hope: In the end, that is God's greatest gift to us, the bedrock of this nation, a belief in things not seen, a belief that there are better days ahead" (Obama 2004).
While Obama does not relinquish a promise of progress, he also introduces the tougher language of uncertainty, of struggle marked by risks and difficulties, one where hard work will be required and sacrifices will need to be made. He draws upon a rhetoric that is familiar to many Americans, in which hope is a challenging practice, one that does not come at the price of blindness to the real difficulties life poses. This is not a hope rooted in scientific progress, economic expansion, military might, or more shopping but one version of a very American homespun populism continually identified with the struggles of the poorest segments of society and a civic responsibility to work for a common good. This political vision, especially as voiced by many African American leaders, is also deeply associated with Christianity. This is not surprising, given that the church has offered African Americans the single most powerful institutional base for its political battles for civil rights and freedoms.
A "blues hope" is not merely otherworldly, however, despite its spiritual roots. Far from it. It speaks especially to the practice of hope as community building, as border crossing. When Obama borrowed a phrase from Reverend Jeremiah Wright, the "audacity of hope," he also used it to speak specifically to the American possibility of creating community across America's borders and conflict-ridden polarizations. What is audacious about this hope? The belief, against all odds, in the possibility of creating community out of conflict. "That was the best of the American spirit, I thought-having the audacity to believe despite all the evidence to the contrary that we could restore a sense of community to a nation torn by conflict" (Obama 2006:356). Obama has insisted time and again that hope has to do with finding threads of commonality that bind us together and creating a political practice that serves those ethically defined goods (Atwater 2007). He proclaims: "Alongside our famous individualism, there's another ingredient in the American saga, a belief that we are all connected as one people. ... It is that fundamental American belief, it is that fundamental belief-I am my brother's keeper, I am my sister's keeper-that makes this country work. It's what allows us to pursue our individual dreams, yet still come together as a single American family" (Obama 2004). These proclamations link hope in the most profound way to a civic and ethically construed responsibility to reach across divides, contributing to recent discussions of hope across a variety of disciplines in which "hope has emerged as a way to redefine the ethical contours of the social and the relational" (Miyazaki 2008:5).
The backdrop of America's racial story between blacks and whites, and our enduring struggles as a nation to come to grips with this divide, is deeply implicated in the Obama message of hope. This racial story so infused the Obama presidential campaign that, as journalists frequently pointed out, it hardly needed to be made explicit: "I, you, we can make history, he says, by turning the nation's sorrowful racial narrative into something radiant and hopeful" (M. Powell 2008:1). Obama's speeches are yet another reincarnation of earlier American, and specifically African American, voices of leaders and writers who have confronted America's racial and economic divides and have tried to build political activism on the hope of healing the country's racial wounds by recognizing a fellow humanity and struggling for a common good. Here, for example, is Richard Wright, writing in 1941: "The differences between black folk and white folk are not blood or color, and the ties that bind us are deeper than those that separate us. The common road of hope which we all traveled has brought us into a stronger kinship than any words, laws, or legal claims" (quoted in West 1993:17).
Rethinking Hope: A Personal Story
For the past thirteen years, as I have gotten to know parents, children, and clinicians in urban hospitals, I have seen ways that this same vision has implicitly infused clinical encounters. And I have seen, too, how often it fails to materialize, how often it is thwarted, how fleeting it can be. Hope, as it has emerged on a grand political scale, shaped by voices as powerful as an Obama or a Martin Luther King, is also present-if one only looks closely enough-in the eloquent words and deeds of parents like Andrena. A good deal of this book concerns the immense and complex work that parents, and sometimes children, do to create healing dramas in the midst of disability and serious illness in their own lives and to bring these into the clinic. Those border travelers struggle to instill and cultivate hope in everyday clinical encounters and in partnerships with clinicians, generating complex practices of "border crossing."
The considerations of hope in this book mark something of a personal journey. I started thinking about hope in a clinical setting in the mid-1980s when I began to study the practice of occupational therapists. I became gripped by the problem of what healing might mean for those with chronic conditions (which rehabilitation professionals like occupational therapists specialize in) when curing is a rare possibility. In my study of these clinicians, I gradually came to realize that another and perhaps more basic way of considering this was to see it as a problem of hope. What was worth hoping for when one was suddenly confined to a wheelchair after a car accident or had lost one's speech as a result of a stroke? These questions haunted clinical encounters, though they were rarely voiced out loud by either clinician or patient.
In this early research, I concentrated primarily on the efforts of the occupational therapists to involve their patients in rehabilitation activities that somehow engendered hope, that spoke (generally tacitly) to future possibilities of a life that could still be cherished. This was not the clinicians' language, I should hasten to add. To speak in such terms would have sounded rather lofty, even religious or existential, hardly the voice of the clinical chart. But occupational therapists often talked, sometimes schemingly, about the skill needed for "motivating patients." And they worried about patients whose hopes were "unrealistic" as well as about those who seemed to have "given up" hope altogether.
In the books I published based on this early research, Clinical Reasoning (Mattingly and Fleming 1994) and Healing Dramas and Clinical Plots (Mattingly 1998a), I considered how therapists worked to create "healing dramas" in the midst of clinical sessions. I defined a healing drama as the configuring of therapeutic time into acted narratives. These acted stories projected possibilities for future lives and selves. One of the most subtle aspects of clinical dramas was their temporal complexity. What happened in the moment of therapy as some kind of enriched present did not matter as much as what that moment portended for a future lived quite outside the world of the clinic. Sometimes the mundane activities of a therapy session, however trivial they might seem in and of themselves (taking a ride in the new wheelchair down to the nurses' station, turning pages of a magazine with a mouth-stick when one could no longer use one's hands, trying out a favorite pasta dish in the rehabilitation kitchen), were transformed from mere tasks to portentous dramatic moments. They suggested that there might be some way to create a worthy life even with a body diminished by disability. In short, they offered moments of hope.
This research prompted me to revisit the hermeneutic phenomenologists I had read as a graduate student and their exploration of significant experience (e.g., Gadamer 1975; Heidegger 1962; Dilthey 1989; Ricouer 1984, 1985, 1988). I could see from my observations of therapists' work and from their informal discussions of "best practice" that for some of them the creation of significant experience was a vital aspect of effective practice itself. It was part of the "art" of therapy, a kind of "underground practice" (Mattingly and Fleming 1994) that could not be reimbursed or documented in the clinical chart despite its centrality to the efficacy of clinical care. In describing this unauthorized aspect of practice, therapists would speak of their concern that "something happen" in therapy so patients would experience sessions as personally meaningful and motivating. For the occupational therapists, this was a practical problem, often expressed in their desire to transform their patients from passive recipients of care to active participants in their own recovery.
On the basis of this study, I made the claim that significant experience was not merely passively received in dramatic form, as can sometimes be suggested by the philosophical phenomenologists, but that actors themselves (like some occupational therapists and patients) may be concerned to create significant experiences for themselves and others. They may try to make certain kinds of stories come true, to create certain kinds of dramas, while avoiding others. This concern that something happen-that time become "eventful"-may be directly linked to the efficacy of clinical practices, providing a culturally shared motivation to create dramatic meaning in specific kinds of encounters.
It was also evident that while therapists might wish for a certain kind of experience to unfold, they were not able to control events or the responses of their patients in order to enforce a pregiven script. In fact, it was commonplace wisdom among experienced clinicians that only novices thought such a thing possible. Good therapists, it was generally agreed, had to know how to "read the situation" and how to "change gears," discerning, in the moment, how patients were responding to the session. Excellent therapists knew how and when to make shifts, even when to abandon treatment plans altogether, if things were not going as anticipated. Experienced pediatric therapists have been especially adamant about the need to develop this sort of improvisational capability in working with children. You have to "capture their attention," they will say, or there is no chance that therapy will work at all.
Although I spent most of my time trying to understand this from the perspective of the therapist, it also became increasingly clear how important the patient's responses and instigations were in shifting clinical time into these more eventful and dramatic moments. And in the interviews I did with patients early in my clinical research, especially with some of the young men with spinal cord injuries whom I got to know, they too spoke of their rehabilitation sessions not so much in the language of acquiring adaptive skills as in a language that was all about their own personal struggles to accept life with devastatingly altered bodies. For them, much more than for the clinicians, learning discrete skills paled in the face of their experience of living in these new bodies. To the extent that rehabilitation therapy mattered to them at all, it was primarily because of the experiences created in therapy time. There were the terrible ones-the time when a trip to the bathroom in the new wheelchair showed them just how much of their bodies they had lost. And there were the fragile hopeful experiences-the time when putting on a shirt by themselves gave them a sense of possibility that went well beyond the specifics of any particular skill.
By the end of this research among occupational therapists, I could see how much their practice involved the work of hope in clinical care. I could also see that if I wanted to understand this work of hope more thoroughly, I needed to carry out a different kind of research study. There were many questions I could not answer from inside the clinical world. If small clinical moments sometimes portended hope, what happened to these hopes when patients left the hospital? Did they and their family caregivers struggle to find hope at home? In what ways? Did the little hopeful moments of therapy time intersect with the work of hope in home and community contexts? How did hope change over time? What could these home contexts tell me about the clinical moments I had called healing dramas? More basic still, what was hope as acted in such transformative dramas? Was it an optimism about a happy ending? A narrative of progress? Already my work among chronically ill patients suggested that hope was more nuanced, less linear, perhaps even something darker. Certainly I could see that for patients it encompassed much more than, and fell well outside of, the confines of a clinical hope that rested on what biomedicine could offer.
To think about all this I needed a different research design, one that focused more on patients and families and less on clinicians and their perspectives. I also wanted to consider hope, healing, and suffering in broader political and social contexts, raising crucial issues of power, class, race, and economics that I had not foregrounded in my earlier writing. For all these reasons I worked with colleagues, especially Mary Lawlor, to develop a much broader set of research projects designed to "travel" with patients and family caregivers between clinic, school, and home. We also chose to concentrate on minority populations plagued by greater health disparities and significantly worse health outcomes than those faced by middle-income white Americans, thus foregrounding issues of race, power, and often social class. My consideration of hope not only as a part of clinical care but as a border activity emerged from this series of research studies that moved across the social spaces of clinics, schools, and homes.
In this research in Chicago and Los Angeles, I found myself plunged into the world of the urban poor, learning to find my way around unfamiliar African American neighborhoods in a city even more intensely racially and ethnically divided than Boston, where I had once lived and taught in underclass urban classrooms for violent teenagers. In 1990, I received a large federal Department of Education grant to carry out an ethnographic study of African American and Mexican American children with learning disabilities to explore disparities and "cultural issues" in education for minority children with special needs. I had assembled a small team of researchers: anthropologists, education specialists, and occupational therapists. Along with other researchers on the team, I spent my time in special education classrooms in several Southside Chicago schools. For the first time, I got to know parents as I went to the homes of the children we followed, trying to find out what it was like for them to raise children with disabilities. I was stunned by the centrality of cultivating hope for those living within oppressive social environments. From the parents, I gradually came to absorb a complexity of perspective that I had not had before. Out of my earlier experiences as a (largely ineffective) teacher of children in great difficulty, I had been left with a kind of helpless despair about the possibility of change for those at the bottom of the social ladder. I had somehow assumed (and it sounds so ridiculous to say it now) that because I couldn't change anything, there was no change to be had.
When I later returned to poor urban neighborhoods and interviewed special education teachers in Chicago, they often seemed to share a similar pessimism about the children they taught. But the parents, many of them, offered a different vantage point. Life was difficult. There was no doubt about that. But there were possibilities too. I spent quite a lot of time at the kitchen table talking to one mother whose son was tagged "severely learning disabled" and who would likely now be diagnosed with autism. (In the early nineties, children in poor black communities-especially boys-were seldom given a diagnosis of autism. Instead, they were likely to be handed either diagnoses of general retardation and developmental delay or ones that categorized them as emotionally and behaviorally disturbed.) His mother rejected these school labels, describing him as "slow" and also "special." For her, his specialness had nothing to do with being in special education. Instead, it had to do with a certain gift to commune with the spiritual world. "He can hear things the rest of us can't," she would tell me, looking fondly at her son playing in the next room. Once when I came to do an interview, her son had a cousin visiting and they were playing together. "Oh," his mother said, "that's Shareen, his 'adopted twin.'"
"That's what we do in my family," she explained at my puzzlement:
Slowness tends to run to some members of my family, you know. Has for generations. So, we pair up the slow person with someone else in the family, a cousin, a sister or brother, something like that, and they become a kind of twin. They help the one who is slow, like my boy. You could say it's their family job.
She gave an example:
I have an aunt who is slow too. She was only a couple years older than me and she couldn't pass her grade when she was in high school. So then she was in my grade. Well, my folks made sure we were in the same classroom together. When she failed some of her courses, I set out to fail mine as well so that I could go to summer school with her. That's so she wouldn't be lonely or have kids tease her too much. I could look out for her.
She also mentioned a nephew of hers who lived around the corner. His parents were sending him to Arizona with a cousin, another slow child, his "twin." He would leave his family and live with his cousin's family, who were moving there from Chicago, so that he could stay with this twin.
This mother told these stories matter-of-factly. It was just what one did, just ordinary life. Such creative strategies for protection and care, not to mention self-sacrifice, opened a whole new world of possibility to me. Things could seem hopeless from the perspective of a professional-a teacher, a school psychologist-but families could be crafting homemade "therapies" to try to take care of their own. Another mother I also got to know had a child she described as "having a lot of emotional problems." (He was also in a "severely learning disabled" classroom.) "The thing about him," she said, "is that because he's not quick, he's not so likely to get in a gang. They aren't going to want him because he's not fast enough. So that's one good thing." She sighed. "But, then, if he's not in any gang, who is going to protect him on the street when I'm not there? He won't have others to look out for him, so he's just a target." She went on, explaining how she tried to solve this problem:
Okay, I had an idea. He needs to know some basic things to be able to look out for himself because, you know, I'm not as well as I once was. I have diabetes. I'm not always going to be here. So, I set up a little store here in the house where he can sell candy and soda to the neighborhood kids. He learns to count change, to take care of money, and the kids get to know him. He learns some street skills. But he's here, where I can watch over him, not out there on the street where kids will steal his money.
Hearing such stories-and watching parents at home with their children-I not only confronted my own blindness as a teacher and community activist but began to see how social science can be equally blind. Things can also seem hopeless from a theoretical perspective if one isn't careful-if one faces the deleterious combination of disability, racism, and poverty in America and sees only the overwhelming, apparently overdetermining social structures that seem to ensure the reproduction of dramatic inequalities. It would be foolhardy, especially in this particular historical period, to ignore the devastating machinery, both global and national, that perpetuates chilling economic and political inequities. But it is equally foolhardy to neglect the ways even those who are most oppressed locate and cultivate "resources of hope" (Williams 1989) that offer reasons to live and to act.
Through research in Chicago and especially in Los Angeles, I have had not only to rethink hope as a category but also to modify my understanding of what a "healing drama" looks like and why it can matter so much to patients and families. If, in my study of occupational therapists, it sometimes seemed to me that I was importing a foreign language in my glosses of clinical work (especially my talk of healing dramas, transformative journeys, and anticipative narratives), I changed my mind when my focus shifted. As I spent more and more time trying to understand chronic illness and disability from the perspective of patients and especially of their families, there was plenty of talk about hope, and about healing as a personal, familial, and sometimes even communal journey. There is perhaps nothing surprising in this, given the pervasiveness of discourses of hope as related to illness and healing in American popular culture. Such discourses gain particular weight and salience when connected to American Christianity and in light of the role of the black church for African Americans as a religious, cultural, and political institution. It is significant that the African American families I speak of here are nearly all Christian. Most belong to fundamentalist faiths. But this fact can be deceiving. The subtle ways hope is practiced and cultivated among these families cannot be reduced to a mere instantiation of dominant American discourses, including those associated with evangelical Christian traditions.
The realization of my own blindness to these powerful and subtle practices of hope has propelled me to develop research strategies and theoretical frameworks that can uncover them, practices that are likely to be hidden or misinterpreted by clinicians and scholars alike. As I have turned my attention increasingly to patients and families over the last decade, I have realized that in emphasizing the creation of significant experience from a clinical perspective, I was describing and seeing only the tip of the iceberg.
Research in a Clinical Borderland
The primary study that informs this book began in January 1997 in Los Angeles and ended (officially anyway) in June 2009. It was initiated with a federal grant that Mary Lawlor and I wrote based on research we had done in Chicago. From our own individual and shared studies, we had long recognized how central it was for families and clinicians to create partnerships in providing pediatric care to children with chronic medical conditions. In addition to confronting a host of political and economic problems posed by an unwieldy and unwelcoming health care system, clinicians and parents often felt personally challenged to find good ways to collaborate, especially when they came from very different social backgrounds. There were many sources of trouble. Mary and I wanted to understand not only where and when difficulties arose but also when things worked well or challenges were surmounted. We proposed a study that would focus upon African American families whose children were receiving care in major urban clinical sites that served ethnically and racially diverse populations.
We began the research in Los Angeles by contacting occupational therapists in a few clinical settings, from small outpatient clinics to major urban hospitals. Both of us were known in the occupational therapy community, and we counted on being able to build upon this. Through our contacts, therapists in several of these sites put us in touch with African American families whose children they were treating. During the first few months of 1997, we gradually settled upon three primary sites and recruited an initial thirty families into the study. While at first this recruitment depended upon occupational therapists, as soon as we were settled into these clinical spaces we met families in many other ways. Waiting rooms proved an especially useful spot, since waiting is often such a long business. Children themselves would sometimes come over to see what we were up to as we sat in waiting room chairs taking notes and trying to get our own bearings in these unfamiliar settings. When we approached families, some were eager to participate, some signed on with trepidation, and others refused. Over the years we have followed over forty families, though trying to keep the total number at any one time to about thirty. Some families whom we got to know during the early months of the study have been part of the research for its entirety-more than half have participated for at least a decade. A few have been part of the project for only two or three years. While the federal funding has ended, to speak of this research in the past tense is a misnomer of sorts, for it is not really finished. We promised families that we would continue to have a yearly "family reunion" where we could all meet and catch up with what had been going on in our lives. In April 2010 we held our first reunion. Many families came, some traveling from as far away as Las Vegas (where they had relocated) to participate.
Mary and I have by no means been alone in carrying out this research. Right from the start we hired other researchers with backgrounds in anthropology or occupational therapy who have played a primary role in recruiting families, collecting data, and discussing how to interpret the data. Thus this has been a team project. Members of the team have changed through the years with the exception of Mary and myself. We have been at its helm, or tried to be, for its entirety. In the acknowledgments I have named the many researchers who have been part of this team, a list of names that is itself a paragraph long. While there are considerable challenges in managing a major research project and trying to do ethnography "at home" with a large, multidisciplinary team, one primary reward is the multiple perspectives introduced by various members of the group. Another is that a great deal more data can be gathered than could possibly be undertaken by any single researcher. But a third is perhaps most important. As team members, we have been able to support one another over the years in trying to live with, or live beside, families and children who have at times undergone immense suffering. I, for one, would simply have lacked the courage or fortitude to carry out this kind of research by myself, even on a much smaller scale.
The People in the Study
We began by recruiting clinicians from the multiple sites where we were doing research, and they then introduced us to families. But very quickly, as we became involved with families, things shifted and we recruited clinicians that families introduced us to, ones who were treating their children. In this way, dozens of clinicians have also become part of this study. When families have moved from clinical site to clinical site, we have tried (where we could get permission) to include these new sites in our study; thus this is very much a multisited study. It also includes a broad array of health professionals: surgeons, oncologists, radiologists, lab technicians, pediatricians, social workers, nurses, nutritionists, physical therapists, speech therapists, health care aides, home health nurses, special educational teachers, psychologists. Demographically, they have predominantly been Euro-American and middle class, though there is certainly some diversity, including Asian Americans of various ethnic backgrounds, Mexican Americans, and a few African Americans.
In recruiting families, our criteria for "qualifying" were quite broad. Initially we focused upon early childhood, so we admitted only families who had children between birth and eight years old at the time of recruitment. We were not, however, disease focused. We rejected such biomedical typologizing in favor of a category that was more phenomenological and more practice oriented-having to do with chronicity itself and the border work that this gives families and children. Thus the children in our study cannot be grouped into a particular disease or disability category. Rather, they have shared certain commonalities of "illness experience" because of suffering from a serious, chronic illness or disability. Children and their parents have also shared (or did share at the time of recruitment) a similarity of practice in several senses. Care has meant frequent visits to an array of health care professionals. Furthermore, families and children have been faced with "chronic homework"-the need to provide care or to carry out health programs at home. Another commonality is race. The fact that the families are African American has meant that there has been a shared racial designation and that for many, seeking care for their children has involved negotiating racial boundaries and racial designations.
Despite these very broadly defined commonalities, differences in social class, in family culture, in level and type of clinical condition, and in personal lives has meant that there has also been a great deal of diversity among families. Attending to this diversity as well as to commonalities has been an important theme in our research.
A few words about why Mary and I chose to follow African American families. From a social justice perspective, African Americans stand out in a very significant way. While the problem of creating partnerships between clinicians and patients (or family caregivers) is by no means exclusive to minority groups, the racial history of the United States means that when interpersonal difficulties arise the specter of race is always present. And this is not merely a phantom. For decades, dramatic health disparities between African Americans and whites across a whole range of diseases have been documented; in most cases this gap is consistently wider than for any other minority group.
These disparities have been linked to two overarching factors. One is the political economy of health care, that is, the persistence of poverty for a large sector of the black population and the structural connection between race, social class, and quality of care. A second concerns what are often called "communication barriers" between health care professionals and African American patients. The most basic problem here is trust. Creating trust between clinician and patient is a significant factor in the effectiveness of health care, especially for those with chronic conditions. A host of research studies have documented the persistence of mistrust in relationships between health care providers and African American patients. The structural and the communicative are intertwined. Poverty plays an enormous role. For those on public aid or without their own physician, emergency rooms are more often used for routine health problems. This means that patients are receiving care from clinicians who do not know them and in clinical situations where clinicians are likely to be harried and exhausted. Emergency room waits are infamous; patients and families are also likely to be frustrated by the time they actually get to see someone. Not, all in all, a promising circumstance for trust building.
Some researchers have speculated that it would be easier to create trusting relationships if clinicians and patients came from the same racial demographic. (And there is some strong evidence for this.) But even if African American patients might more easily trust, and be trusted by, African American clinicians, structural factors enter here too. Urban health care facilities in which a larger portion of clinicians are also African American are routinely underfunded and often poorly staffed because they are generally located in underclass neighborhoods. These communities do not receive the same level of financial assistance from city, state, or private resources that is given to their comparatively wealthier counterparts. And if they are located in poor neighborhoods with higher levels of violence and sicker patients, they are much busier and more overcrowded, with exceedingly long waits in the emergency room.
Where African American patients have a choice, they may opt to get care at hospitals with better resources, even though there may be few African Americans on staff. This became very evident in our study, where many families sought care for their children in hospitals with state-of-the-art technology, less crowding, cleaner halls and rooms, and stronger reputations for having well-trained staff. But this meant that the clinicians treating their children (especially physicians and rehabilitation therapists) were far less likely to be African American. Thus the challenges of crossing boundaries and creating partnerships across race and, often, class divides have been especially heightened for African American patients. (I have more to say about this in the chapters to come, especially chapter 3.)
Narrative Phenomenology as Research Method: Ethnography of Events, Personal Lives, and Clinical Institutions
In some ways this study shares features typical of an ethnographic tradition, including getting to know a small number of people well, participating in their lives, situating ourselves in a few locales where we could observe the comings and goings of people, and using multiple methods of data collection. But other, less familiar features of this design have turned out to be instrumental in providing a grounded basis for developing a narrative phenomenology of practice. Looking back, it has become clear that the way we carried out this research has been extremely influential in the conceptual framework I have developed, one that moves analytically from the micro to the macro, from the personal and interpersonal to the institutional. Why is this so?
First, although we wanted to have something to say about health disparities as these pertained to African Americans, we were committed to carrying out ethnography that did not attend solely (or even primarily) to how social categories and subjects were produced. We began, instead, with an approach that was much more "person centered." We tried to do what Douglas Hollan has so nicely articulated, to recognize the "importance of grounding our discussions of human experience in the compelling concerns of our subjects' everyday lives. Because the flow of experience is contested, indeterminate, and emergent, we must follow our subjects through time and space, and across different cultural domains, and in so doing, discover what is at stake for them in the course of their daily lives" (2001:55).
From the start, we were determined to attend to how families and children experienced living with disability and illness, learning to navigate the health care system, struggling with their own suffering, and creating lives they deemed worth living. What kinds of matters were most at stake for them? How did these change over time? And what about the clinicians? What were their struggles? How did they define a good clinician, a good patient, what healing might mean? In the context of these personal, familial, and often highly specific and variable struggles and concerns (which we could not know beforehand), we then wondered about social categories: How was expertise produced? What about race, class, or gender? What kinds of categories emerged, were resisted? In what ways and under what circumstances? These were important questions, but these were not our first questions. We did not presume that they were primary to the parents and children whose experiences we were trying to understand. In fact, I write about hope in this book because this, rather than race or class, has seemed to me the central concern from their perspective.
This is ethnography over the long haul, and the impact of this longitudinal design cannot be overestimated. It has allowed us to follow children and families as they change over time. Temporality itself has emerged in a significant way. I have been able to explore concretely and in the context of people's lives certain philosophical claims concerning the phenomenology of human time and the place of narrative in shaping it. Our long-term engagement has revealed a great deal about clinical encounters as events in family lives, about the multiple perspectives that families and clinicians bring to these encounters, and about how healing itself comes to be reimagined and redefined through the course of an illness or a child's life. It brings home the social nature of illness and healing, how much illness (and disability) is also a family affair. As the anthropologist Myra Bluebond-Langner notes in her ethnography of families caring for children with cystic fibrosis, family life is intimately related to "pivotal experiences or events" in the ill child's own illness trajectory (1996:13). Even the possibility of recovery is a family matter.
We have focused great attention on social action and on the interactions between clinicians and families, adopting common techniques of "microethnography," especially videotaping family events and clinical encounters where possible. This has allowed us to return to these scenes again and again and do fine-grained analysis of a few minutes of interaction. Home events include birthday parties, funerals, graduations, and other pivotal temporal moments as well as everyday activities in family life. I have always relied upon videotaping as a key element in my research because it allows such close attention to the details of social action. In this project, we have continued to refine ways of recording and interpreting video data throughout the years. We have sometimes borrowed (loosely) from the tools of linguistic anthropology to help us refine our ways of attending to the small details of social interaction. This book includes dozens of snippets of these videotaped moments, which reveal the centrality of this microethnographic focus.
In adopting an event-centered approach, we were concerned to understand events (especially clinical events) from multiple perspectives. Rather than focusing on the perspective of one of the types of actors in clinical interactions (say patients, family caregivers, or clinicians), we wanted to understand the interactions as the product of multiple points of view. We tried to get at this not only by paying close attention to the interactions themselves but through our interviewing. As much as possible, we did what we came to call "event-centered interviewing": that is, separately asking clinicians, parents, and sometimes children to "tell us what happened" in a clinical encounter that we had also observed or filmed. Events enter in another way. We tried to discover the sorts of activities that mattered most to families and children, accompanying them to such things as drill team practice or soccer matches if these were important family events.
We also spent a good deal of time asking parents (and children, as they got older) to tell us stories about crucial events in their lives. We worked to explore a child's illness or disability as one subplot in personal and family lives and, for this reason, carried out repeated life history interviews. This attention to the personal has been instrumental in helping me see how deeply people locate themselves in ethical projects of Becoming (to borrow from Martin Heidegger) that are very much related to the practice of hope. I have witnessed parents, in particular, come to understand their lives and fates and hopes differently as their lives (and the illnesses of their children) have changed.
Interviewing has been especially suited to the exploration of storytelling as a mode of reflection upon past events. We have heard some stories again and again, stories that change in tenor and tone as they are relived in new present moments. We have also heard "anticipated stories"-stories that speak to what participants imagine will come to pass (my child's first day of school, when my child will be out of the wheelchair, etc.)-and have been able to witness some of those "future times" as children have gotten older. We have then been able to hear stories that participants tell about moments that have become part of history rather than expectation. This storytelling, even when it is focused upon events, reveals a great deal about personal and shared family lives.
This long-term research has offered us a much deeper understanding of why certain moments in the clinical encounter matter so much to parents and children and what kinds of exchanges turn out to be important to these partnering efforts. It has enabled us to connect minute intense moments of "significant experience" to what might appear (especially to clinicians) as routine clinical moments, ones that never show up in the medical chart but speak to the lives of children and families well beyond that encounter.
One unique feature of our research design that has provided a window upon particular events and on biographical lives is the invention of the Collective Narrative Group. When we began this research, Mary and I thought it might be a good idea to see if some of the families wanted to participate in an advisory group. We organized two different family groups, with the idea that we might be able to do a kind of collective interviewing of people who decided to attend and that they might also have some advice or reflections upon the themes that were emerging from individual interviews and clinical and home observations. While not all of the families who signed up to be in the study came to these groups, those who did became very attached to them.
We began these groups a few months into the project and continued to meet three or four times a year. Our poststudy yearly reunion simply continues this tradition. To be frank, at the beginning I thought this was a good idea mainly because federal funders might take to the idea of having a family advisory group. (Federal grant funders often seem to like hearing that you are going to be getting some advice.) But to my immense surprise, these groups have been the source of some of the most powerful data we have collected. They have come to be borderland communities in their own right as families and those of us on the research team have made our own temporary family-like community. So much has happened in them that I could probably devote an entire book simply to exploring how they have evolved since we began them in 1997 and how family members have come to use them for their own purposes. But here I will confine myself to giving a cursory description of what they entail.
Mary and I have co-led them, a tricky facilitation in which we have tried to ensure that everyone who speaks feels listened to and respected even when the things they are saying make others uncomfortable, angry, or annoyed (a feat we have not always been able to achieve). The general structure of the meetings is that each person gets a chance to offer any personal or family "updates" about significant events that have happened since the last meeting. In the past, we also generally posed one or two questions around particular themes that had emerged in the research and put them to the group for discussion. With the permission of families, we have both audiotaped and videotaped these meetings. We have always served lots of food, and meetings take place during mealtimes.
Early in the development of these Collective Narrative Groups, Mary and I set a few basic ground rules to try to ensure that people would feel listened to and respected, despite the great diversity of those invited to the groups. The key "rules" (which Mary and I have announced ritually at the beginning of every meeting) are: everyone gets a chance to speak, there is no right answer, everyone has a right to his or her own opinions and experiences, people should feel free to show whatever emotions they want, and whatever is said in the group remains confidential in the sense that we will only report what is discussed using pseudonyms. It has dawned upon me that we unconsciously adopted rules that one might easily hear at any twelve-step meeting. While they may seem a bit jargonlike, they have seemed to work. Parents have told us that they have been able to say things in the group they were not even willing to tell their own family members; so perhaps there is something to say for this attempt to create some kind of safety. And oddly, people have sometimes decided to share much more personal parts of their lives in these meetings than they have in individual interviews, even when speaking to researchers they knew quite well. It is worth mentioning that some family members have become friends as a result of their years meeting up with us.
Given our commitment not to begin with a priori race, class, or economic determinisms, what has been perhaps the most surprising is the way this mode of ethnography has helped to illuminate the structural or discursive conditions that shape events and personal lives. Our microethnographic approach, with its heavy reliance on the analysis of clinical and home interactions, has made it possible to analyze the workings not only of intimate personal or interpersonal dramas but also of the discursive genres of hope (which I will discuss in the following chapter) as practiced in very small, nearly invisible gestures. These genres, in their pervasiveness and global sweep, become visible not so much as abstract ideals but as the very stuff of everyday social interaction, pervading even the minute routines and dramas of ordinary life. The discursive, in other words, becomes visible as something intricately acted.
It has been important that we have conducted research within a variety of clinical spaces. This method of carrying out longitudinal and comparative institutional ethnography has allowed us to consider the role of particular kinds of institutional cultures in which health care takes place. Further, following children with a range of medical conditions has brought us into contact with many clinical subcultures in a given setting. This situatedness across several clinical sites (and clinical subcultures) has proven extremely helpful for an analysis of hope (especially clinical hope) at a discursive level. The "canonical" clinical genres of hope that I will describe in the next chapter are those that one can find variously expressed and acted across these institutional sites and clinical subspecialties.
Further, following families into their home and community spaces, and doing so across time, has also allowed us to track (from the inside, so to speak) how other structural conditions have impinged upon their lives: for example, such material matters as changes in the economy, in the demographics of housing and living patterns in Los Angeles, in the way health care is delivered, and in the way public funding for health care and welfare is allocated. While these do not form primary topics of this book, witnessing and documenting how families (and sometimes clinicians) struggle with changing laws and levels of economic support for health care reveals the structural as something immediately, often painfully, lived. Not surprisingly, the practice of hope-even hope for healing-is immensely influenced by these shifting political and economic conditions.
What Follows: The Chapters
In this first chapter I have begun to sketch the main claims that will be elaborated throughout the book and have given some background about my own entrance into the clinical scene. I have also offered a space-both literal and metaphorical-that serves as my primary stage upon which to explore how dramas of hope unfold. Within this liminal space I have introduced Andrena, a central character in the book.
In the following chapter I plunge directly into a theoretical outline of narrative phenomenology. The framework I set out might be thought of as a kind of tool kit of narrative constructs with which to explore hope "dramatistically" both at the level of events and at the level of discursive structures. At the level of events, I demarcate three kinds of narrative acts: narrative mind reading, narrative emplotment, and storytelling. At the discursive level, I introduce four primary genres of healing that are in continual circulation in clinical encounters. These genres provide powerful cultural resources for clinicians and families, a social imaginary of hope in which hope is linked to healing. Three are clinically canonical: they offer plots that belong to, and dramatically express, authorized discourses of hope in the clinical world. In these clinic-centered dramas, the clinician, generally a physician, and disease itself are the primary characters. But the most important from the perspective of the families is a fourth genre: healing as transformative journey. In this one, unlike the first three, patients and families are the "main characters." Their lives, personal, familial, and communal, emerge as the critical sites in which hope and healing are to be fashioned.
While in chapter 2 I offer some small examples of clinical interchanges to help illustrate this tool kit of constructs, it is in the third chapter that the ethnography proper really opens. Turning again to Andrena, I begin an examination of the clinical encounter as a contested border space and as a space producing "familiar strangers" who are blamed for all manner of trouble. Here and in chapter 4, I take a close look at some highly charged moments where difficulties and misunderstandings arise between clinicians and parents. In these and the chapters that follow, I call upon the narrative acts and healing genres I outlined in the second chapter to examine how hope is contested, refused, negotiated, and created in the fragile and fraught partnerships between families and clinicians.
Having spent two chapters looking at the kinds of trouble that clinicians and parents can get into, and how easily hope is thwarted, I explore in chapters 5 and 6 the creation of hope in clinical encounters and how hope travels between clinic and home. Chapter 6 also investigates the role of an unexpected resource of hope: broadly circulated popular culture stories, Hollywood-marketed fantasies consumed by children. I look at how these "daydreams" are appropriated by children, clinicians, and family members as a means to explore possible worlds and identities that cannot be realized literally but can suggest new spaces for hope.
Chapter 7 examines why the practice of hope, even when cultivated and nurtured by clinicians, children, and parents, so easily falters. It explores the mystery of why clinicians so often seem not to recognize their own role in fostering hope for families and children even when they have become masterful at it. The concluding chapter (chapter 8) summarizes and extends some of the main claims of narrative phenomenology and what it offers to an understanding of hope as a practice of creating communities in clinical borderlands. I end the book, however, not with abstract commentary but with a return (as perhaps befits an anthropological phenomenology) to the lives of two of the people I have written about. I offer something of an epilogue to consider what has happened to them since the clinical moments I described in earlier chapters.