Narrativas (auto)biográficas do Baixo Amazonas: memórias, identidades, inclusão e a (des)escolarização falciforme

Abstract

This study investigates the life and educational trajectories of individuals with sickle cell disease, sickle cell trait, and iron-deficiency anemia residing in the municipality of Parintins, Amazonas, in the Lower Amazon region. Drawing on my own narrative as the sister of a person with sickle cell disease, the research is grounded in an (auto)biographical epistemological-methodological perspective, based on authors such as Passeggi, Souza, Vicentini (2011), Vasconcelos (2022), and Josso (2004), who conceive of self-narratives as a tool for constructing historical consciousness and valuing silenced subjects. It also engages with Freire (1996, 2019) and Hooks (2013) in the field of liberating education and engaged pedagogy, and with Nóbrega (2005) in the discussion on the corporeality of bodies. It adopts a qualitative approach of an empirical nature, combining documentary research in the municipality’s Departments of Education and Health with narrative interviews with four participants: three mothers of children with sickle cell trait and iron-deficiency anemia, as well as a self-narrative by a young adult with sickle cell disease. The central objective was to understand these subjects perceptions of identity, memories, and narratives regarding their schooling in the Amazonian context. The results show that sickle cell disease transcends its biological dimension, constituting itself as a biocultural phenomenon marked by structural inequalities, institutional racism, and insufficient public policies. The literature review revealed the invisibility of these individuals within the education system; while the Department of Health acknowledges their existence, the departments of education lack data or initiatives specifically targeting this population. The participants’ narratives were titled Waxing Moon, New Moon, Waning Moon and Full Moon, which highlight: the burden placed on families as the sole support network; the silencing and delegitimization of sickle cell pain by healthcare professionals; the absence of educational support during periods of hospitalization; and the threat of institutional punishment due to school absenteeism caused by health crises. The study proposes the concept of sickle cell (de)schooling to describe the systematic process of exclusion operated by an educational system rigidly structured for idealized bodies, which fails to create conditions for these students to remain in school. As a contribution, it highlights the urgency of intersectoral public policies that integrate health and education, the effective implementation of hospital-based classes, the continuing education of professionals, and curricular flexibility that recognizes the unpredictability of the disease as part of life, rather than as a deviation to be punished.