The Paradox of Hope: Journeys through a Clinical Borderland

The Paradox of Hope: Journeys through a Clinical Borderland

The Paradox of Hope: Journeys through a Clinical Borderland

The Paradox of Hope: Journeys through a Clinical Borderland

Synopsis

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.

Excerpt

In one sense, this is a book about everyone. It concerns the suffering that comes with bodily affliction and the efforts people make to create and—perhaps more important—to reimagine hope even when life has become very grim. As humans, we are all subject to the vulnerability of our bodies. We all suffer. But this book is also more specific, directed primarily to one social scene: the clinical encounter. While clinicians are important here, the main characters are African American parents bringing their children to hospitals and clinics for care. These are mostly very ill children or children with severe disabilities. Thus this is a biomedical story, a race story, and an American story. It is also a relationship story, speaking to the complexities of creating working partnerships between clinicians and families and the trickiness of that effort. I’ve tried to tell this tale from many points of view: parents, clinicians, and (as much as I could) the children themselves.

This is also a book about ideas, a philosophically oriented anthropology. It offers a proposition for a way to examine hope and, beyond that, social life itself as a narrative practice. in making my case, I move between meditations on big ideas and fine-grained analyses of moments of everyday life. the chapters are filled with stories, but there is significant attention to abstract argument and reliance upon some key philosophical texts. Chapter 2 is especially dense in this regard. This theoretical attentiveness provides a conceptual framework (and its justifications) as a kind of road map before readers enter dense ethno-

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