Mulheres da associação feirense de pessoas com doença falciforme na busca por seus direitos

Abstract

This work presents an analysis of women with Sickle Cell Disease (SCD) or mothers who participate in the Feirense Association of People with Sickle Cell Disease (AFADFAL). This is an association based in Feira de Santana, non-profit, and fighting for the rights of people with SCD since 2012. The participatory journey of the women in this association, with their many challenges, inspired the author to choose this study as she has been collaborating with the association since its inception. This study aims to give visibility to the female leadership of AFADFAL and contribute to the awareness/reflection of the association members about the importance of social participation, collective action, as well as enable a reflection on these women's struggle for their rights in exercising their citizenship despite their multiple demands. This research purposes to understand the difficulties faced by women members of AFADFAL regarding their rights. It has the general objective of analyzing the women members of AFADFAL in the pursuit of their rights and/or those of their children; and specific objectives: to describe the profile of women who participate in the association; to understand the main challenges faced by these women for the realization of their rights and/or those of their children; to specify the services collectively accessed by the women of AFADFAL; to identify the assumption of roles by women in the association. The methodology used in this study is a qualitative approach, of a descriptive and exploratory nature. The research was carried out from the documental analysis through the records in the minutes of the Association’s meetings to verify the frequency of women in the assemblies, as well as semi-structured interviews. Preliminary data reveal that these women didn’t have previous activism regarding the female issue or gender-related aspects; their participatory process occurs based on their pain demands or the pain of their children, which drove the associative, participatory, and consequently collective process. This fact highlighted a greater need for awareness among women with sickle cell disease who are associated with AFADFAL.