Abstract
Our subject is a dialogue with six literary works, understood in the publishing market as biographies that consider first and second person narratives on the relationship with situations of chronic, rare or complex disease. As a theoretical essay, we try to build an argument: these biographies are public forms of people's construction and presentation; they represent the possibility of assigning a place of visibility to moral experiences, of great public appeal, but which must be recognized in health care and training as political tools for reflection on practices. Thus, they become testimonies, providing less personal life histories and more biographical paths, with an interactionist dialogue among meanings, places, people, positions, stigma, right violations and discrimination.
Highlights
Some universes of research – purposely universes, in the definition of social and human sciences, to think about interactions between people, places, and times, but which in a poetic license, embrace a metaphor that evokes constellations, stars, and planets – do not allow us to just an external perspective
We will purposely avoid this format. These books support an argument to be developed in a theoretical essay: biographies of life and living with rare, chronic and complex diseases translate the dynamics of suffering beyond life histories, but are organized as ethnographic literature, translating a field of construction and public presentation of an individual
This sense of field – in the light of Bourdieu17 – calls us to understand that the paths built reveal rituals of interaction mediated by stigmas, powers built around difficult diagnoses, high-cost medicines – which became actors – and that require hyper-specialists, and other performances by fathers, mothers, patients who reinvent themselves and qualify as experts, vying for speeches and rights, sharing political spheres, and scientific congresses
Summary
Some universes of research – purposely universes, in the definition of social and human sciences, to think about interactions between people, places, and times, but which in a poetic license, embrace a metaphor that evokes constellations, stars, and planets – do not allow us to just an external perspective. These books support an argument to be developed in a theoretical essay: biographies of life and living with rare, chronic and complex diseases translate the dynamics of suffering beyond life histories, but are organized as ethnographic literature, translating a field of construction and public presentation of an individual. This sense of field – in the light of Bourdieu17 – calls us to understand that the paths built reveal rituals of interaction mediated by stigmas, powers built around difficult diagnoses, high-cost medicines – which became actors – and that require hyper-specialists, and other performances by fathers, mothers, patients who reinvent themselves and qualify as experts, vying for speeches and rights, sharing political spheres, and scientific congresses. They become testimonies, providing less personal life histories and more biographical paths, with an interactionist dialogue among meanings, places, people, positions, stigma, right violations and discrimination
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