AFFECTIONS AND POLITICAL ENGAGEMENT: FAMILY EXPERIENCE IN AN ASSOCIATION OF PEOPLE WITH SICKLE CELL DISEASE

Abstract

Introduction: Sickle Cell Disease (SCD) is frequent in Black Population and its manifestations are amplified by racism. Collective actions such as social associations are important in the struggle for rights, giving visibility and political voice to the collective. Objective: to understand the family experience with the creation of an Association of people with SCD in the state of Mato Grosso/Brazil from the affective and sociopolitical motivations that mobilized the engagement. Method: qualitative socio-anthropological study, with comprehensive interviews with the mother, father and son, members of the Association. For data analysis, we used the life trajectory, locating remarkable events of the family experience with the SCD and the creation of the Association. Results: of the three children, the first had severe symptoms and complications of SCD, including two strokes, and lived for about 32 years. The second has mild symptoms and is the vice president of the Association. The third died at 10 months of age. The daily coexistence with the SCD in the care of the three children imposed frequent contact with health services exposing them to institutional racism and promoted to Mother and Father the knowledge through the experience that was extended to the collective when they engaged in the Association where care is on a larger scale. Conclusion: the associations translate demands related to the SCD, removing them from the personal and family sphere and moving them to the public space, reflecting on the struggles of the broad agenda for the Health of the Black Population.