Narrativas em saúde: Refletindo sobre o cuidado à pessoa com deficiência e doença genética no Sistema Único de Saúde (SUS)

Abstract

The factors that influence effective healthcare for people with disabilities and genetic diseases within SUS include the presence of stigma, relationships marked by biomedical power and institutional violence. This article aimed to discuss the issues that run through this care, guided by narratives on this author’s experiences of caring for children and families. This test was written in essay format and discusses the issues surrounding healthcare and benefits, within the context of practices driven by biomedicine and biopower. The narratives reveal the transforming capacity of affection and additional potential of meetings, marked by circuits of benefits and guided by construction of interpersonal relationships between professionals and service users that promote new spaces and forms of healthcare.