Grounded in intimate moments of family life in and out of hospitals, this book explores the hope that inspires us to try to create lives worth living, even when no cure is in sight. The Paradox of ...Hope focuses on a group of African American families in a multicultural urban environment, many of them poor and all of them with children who have been diagnosed with serious chronic medical conditions. Cheryl Mattingly proposes a narrative phenomenology of practice as she explores case stories in this highly readable study. Depicting the multicultural urban hospital as a border zone where race, class, and chronic disease intersect, this theoretically innovative study illuminates communities of care that span both clinic and family and shows how hope is created as an everyday reality amid trying circumstances.
One does not just live in a crisis: a crisis calls for action. Etymologically, from the Greek krisis, it is a turning point or a moment of decision. It not only alters perception; it alters the ...demands for living. It stands out from the everyday. If we follow Gail Weiss (2008), we could say that a crisis is a moment when the ground called “ordinary life” is interrupted in such a way that it no longer functions as an out-of-awareness backdrop but itself becomes the visible figure. But what happens when the ground is already permeated by crises, large and small? How should we think about crisis when we cannot call upon a simple binary—times of crisis and somehow livable normal times? How to think, conceptually, about those communities who live with what is variously termed “slow death” (Berlant 2011), “slow violence,” (Nixon 2011) or “chronic crisis” (Vigh 2008) that make the everyday a source of such continual threat that crisis and non-crisis shade into one another? I ask these questions in the context of my twenty-year history of research in African American communities in which families are caring for children with disabilities and chronic illnesses.
It’s a special pleasure to have to think again about one’s own ideas because of the way others engage with them, or take detours from them, or turn them upside down. Even familiar concepts and images ...become strange when carried to ethnographic shores distant from one’s own. So, I want to begin by thanking the contributors to this special issue for the surprises in these articles. In turning to them I have had to reflect more than once on the metaphor that framed Moral Laboratories. I clung to this rhetorical figure with a stubborn insistence when I was writing the book and giving talks about it, despite some very reasonable protests that a laboratory was a strange sort of trope to catch the unruly, chancy lives, haunted by moral tragedy and ethical uncertainty, that I was trying to illuminate. When I selected it as a defining image, I chose it in part for its misfit with the ethnographic spaces I was exploring which were grounded in a 15 year ethnography of African American families raising children with severe chronic illnesses and disabilities.
Waiting is one obvious form of anticipation. This article considers waiting for death. Drea, a mother whose five-year-old daughter was diagnosed with a virulent form of brain cancer, experiences a ...shifting anticipatory terrain as death looms large. Calling upon phenomenology, I ask two primary kinds of questions that connect time, narrative and relationality in considering Drea's experience of waiting. First, I ask what Drea is waiting for and what kind of time horizon this waiting opens up. My second question is less obvious for an article on anticipatory time: who does she wait with? To put this phenomenologically: how might we consider 'waiting with' as a form of experience? I bring to bear phenomenological considerations of narrative time, drawing especially on Carr, as well as Nancy's phenomenology of relationality.
This paper considers the narrative structure of clinical action. I argue that clinical encounters involve clinician and patient in the creation and negotiation of a plot structure within clinical ...time. This clinical plot gives meaning to particular therapeutic actions by placing them within a larger therapeutic story. No therapeutic plot is completely pre-ordained, however. Improvisation and revision are necessary to its creation. In making a case for the narrative construction of lived time, of narratives that are created before they are told, this paper departs from the predominant mode of narrative analysis within medical anthropology that has focused on narrative discourse. Therapeutic emplotment is concretely considered through an interpretation of a single case, a clinical interaction between an occupational therapist and a head-injured patient.
During a workshop at Aarhus University, participants were asked to carry out an anthropological experiment modelled upon an artistic one. The artistic experiment involved one filmmaker presenting a ...series of obstructions to another, in effect setting unfamiliar and even abhorrent artistic tasks. My obstruction involved drawing upon Marquis de Sade's writings to consider urban gang violence among the African Americans I have studied. This paper represents my uneasy response. It is fashioned as series of dialogues, rather in the manner of a theatre piece. I offer an ethnographic case where a child is murdered and his older brother, Ralph (a gang member), exhorts his fellow 'homies' to stop the killings. Dialogues extracted from Sade's fictional debates between the virtuous and the libertines are juxtaposed against a fictional dialogue between Ralph and gang members who speak to the pleasures of violence and gang life.
Investigations into clinical communication and interaction have provided an avenue for a Foucauldian-style analysis of how subject positions are produced in clinical settings through various ...practices of moral subjugation, often drawing upon such concepts as biopower and biosociality. I take an alternative approach. In exploring the moral vulnerabilities of coming to inhabit a particular subject position, I build upon a first person neo-Aristotelian virtue ethics rather than a Foucauldian-inspired one. My central claim is that although a focus on biopower is enormously fruitful, moral vulnerability is about more than being morally subjugated. This does not sum up the moral perils that people may face, especially the possibility of moral tragedy. In the context of an ethnographic case centering upon one mother, Dotty, and her very ill daughter, Betsy, I argue for why a conception of tragedy is so important to moral life and why a first person virtue ethics is invaluable for its exploration. This case centers upon Dotty's interactions and relationships with the doctors caring for her daughter. It is drawn from a 15-year ethnographic study of African American families in Los Angeles who have children with significant illnesses and disabilities.
Waiting is one obvious form of anticipation. This article considers waiting for death. Drea, a mother whose five-year-old daughter was diagnosed with a virulent form of brain cancer, experiences a ...shifting anticipatory terrain as death looms large. Calling upon phenomenology, I ask two primary kinds of questions that connect time, narrative and relationality in considering Drea’s experience of waiting. First, I ask what Drea is waiting for and what kind of time horizon this waiting opens up. My second question is less obvious for an article on anticipatory time: who does she wait with? To put this phenomenologically: how might we consider ‘waiting with’ as a form of experience? I bring to bear phenomenological considerations of narrative time, drawing especially on Carr, as well as Nancy’s phenomenology of relationality.
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