Experiência coletiva e agência de organizações sociopolíticas frente ao racismo e à anemia falciforme em Mato Grosso

Abstract

Sickle cell anemia is the most common hereditary disease in Brazil and has a high prevalence in the black population. Given its epidemiological, historical and political importance, since mid-1995, it has been an important driver in engagements of the Black Movement in the area of health, and in the politicization of people with the disease and their families in the concretization and implementation of equitable public health policies. This is a socio-anthropological study in the area of health, from the perspective of New Sociologies, integrating concepts of relational processes not limited to face-to-face interactions, given the broadness of the collective experience. Our aim was to analyze, based on the sociopolitical insertion of politicized social agents, the collective experience of social organizations in Mato Grosso that are committed to the rights of the black population, with emphasis on the health of this population and attention to cases of sickle cell anemia. To this end, we sought to understand the historical aspects of creation, how the actions and meanings of the social organizations constituting the Black Movement of the state and of the Association of people with the disease are configured. The thesis was developed in the form of an article, so there is a general methodology and a specific one for each article. Leaders of the Black Movement and the Association of People with Sickle Cell Disease of Mato Grosso participated in the study. The selection was intentional, based on predefined inclusion criteria by means of the snowball sampling technique. Data were composed from the comprehensive interview guided by thematic script, audio recorded and recorded in a field diary. All data were transcribed and submitted to comprehensive and detailed analysis. For presentation purposes, the analyzes were organized in three manuscripts: 1) Intersections to Think the Engagement, Identity and the Sociopolitical Expression of Social Movements; 2) Identity and Repertoire of Action of the Black Movement and the Association of People with Sickle Cell Disease in Mato Grosso; 3) Engagements before Sickle Cell Anemia by Two Social Organizations in Mato Grosso. The Black Movement in Mato Grosso is an expressive illustration of the social movement as a source of knowledge and practices. The political actions of the Black Movement and Association of People with Sickle Cell Disease of Mato Grosso gain strength when they interact and articulate with diverse sources of external support, including other social organizations, educational institutions and development agencies. This engagement affects the formation of support networks and the politicization of subjects whose actions gain strength and greater effectiveness in the desired social changes. We highlight the historical and political importance of sickle cell anemia for black people, as it constitutes one of the main proposals for claims to improve the health of the black population. Considering the conflict over the terms “sickle cell anemia” and “sickle cell disease” and the interfaces of their use with the racialization of the disease, it is important to rethink the (re)construction of the place of sickle cell anemia in the Black Movement without denying its political relevance in the repertoire of actions for the Black Movement in the area of health. Undoubtedly, sickle cell anemia in Mato Grosso and in the national context is an important driving force of engagements of the Black Movement and the politicization of subjects, both militants and people with the disease and their family members.