Danielle Spencer – författare

Narrative medicine is a fresh discipline of health care that helps patients and health professionals to tell and listen to the complex and unique stories of illness. The Principles and Practice of Narrative Medicine expresses the collective experience and discoveries of the originators of the field. Arising at Columbia University in 2000 from roots in the humanities and patient-centered care, narrative medicine draws patients, doctors, nurses, therapists, and health activists together to re-imagine a health care based on trust and trustworthiness, humility, and mutual recognition.Over a decade of education and research has crystallized the goals and methods of narrative medicine, leading to increasingly powerful means to improve the care that patients receive. The methods described in this book harness creativity and insight to help the professionals in being with patients, not just to diagnose and treat them but tobear witness to what they undergo. Narrative medicine training in literary theory, philosophy, narrative ethics, and the creative arts increases clinicians' capacity to perceive the turmoil and suffering borne by patients and to help them to cohere or endure the chaos of illness.Narrative medicine has achieved an international reputation and reach. Many health care settings adopt methods of narrative medicine in teaching and practice. Through the Master of Science in Narrative Medicine graduate program and health professions school curricula at Columbia University, more and more clinicians and scholars have obtained the rigorous training necessary to practice and teach narrative medicine. This text is offered to all who seek the opportunity for disciplined training in narrative medicine. By clearly articulating our principles and practice, this book provides the standards of the field for those who want to join us in seeking authenticity, recognition, affiliation, and justice in a narrative health care.

Bridging memoir with key concepts in narratology, philosophy and history of medicine, and disability studies, this book identifies and names the phenomenon of metagnosis: the experience of learning in adulthood of a longstanding condition. It can occur when the condition has remained undetected (e.g. colorblindness) and/or when the diagnostic categories themselves have shifted (e.g. ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. Though this phenomenon has received relatively scant attention, learning of an unknown condition is often a significant and bewildering revelation, one that subverts narrative expectations and customary categories. How do we understand these revelations? In addressing this topic Danielle Spencer approaches narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and the creation of writerly texts. Beginning with Spencer's own experience, the book explores the issues raised by metagnosis, from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences-from Blade Runner to real-world mid-life diagnoses. Finally, it situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Spencer proposes that better understanding metagnosis will not simply aid those directly affected, but will serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.