Viver com HIV/AIDS e deficiência(s): visões e experiências de pessoas positivas ao HIV e deficientes e de médicos no Rio de Janeiro

Abstract

Research focused on the intersection of two themes: disability and HIV/Aids. These share aspects such as prejudice, discrimination and stigma, which contribute to social exclusion, apart from sexuality. In order to construct the theoretical part of this thesis, it was necessary to revisit the social history of Aids and the role of Aids NGOs, especially Support Houses. I also broached the concept of disability, as well as creating a map of the literature on the theme. The research objective was to understand the experiences of disabled people living with HIV/Aids (PLWHA), as well as to gain knowledge of the support actions offered to this group by civil society organizations and infectious disease doctors and general practitioners. For this purpose, an ethnographic study was performed at Casa Maria de Magdala (CMM), through participant observation, in order to become acquainted with the philanthropic institution located in Niterói, Rio de Janeiro State. The observation was complemented by semi-open interviews with disabled PLWHA and doctors, some who worked with CMM and others from hospitals and public universities. CMM was founded by a spiritualist group in the 1990s and is currently managed by the “Association of Friends of the Patients of Casa Maria de Magdala” NGO. The institution takes in disabled adults and elderly people, with preference given to those afflicted with opportunistic infections resulting from Aids. It serves as a “Support House” and “Institutional Shelter”, while also being an “Inclusive Shelter”. Based on the interviews, I emphasised: 1. the experiences of disabled PLWHA, who are socially vulnerable and often abandon Antiretroviral Therapy or are unaware that they are living with HIV. Both situations favour the development of opportunistic infections that can lead to the development of disability(ies); 2. the narratives of doctors on the frontline in public hospitals that are outstanding in Aids treatment and perform a crucial role in caring for the infected; and, finally, 3. the narratives of CMM doctors who have cared for residents with AIDS-inflicted disabilities. It is an experience that currently receives little attention, or is even ignored. Sufferers require full-time care and intersectoral efforts such as social care and health. It must be noted that in these situations, caregivers are unable to do paid work outside the home. In some cases, caregivers must combine forces to enable people with disabilities resulting from HIV/AIDS to have social interaction. Disabilities resulting from opportunistic infections have been researched in various parts of the world, from different angles, since the mid-2000s. However, in Brazil the subject does not seem to have received the attention it is due. As we approach the end of the fourth Aids decade, disabilities resulting from Aids have gained some notoriety and are beginning to be tackled by researchers and health authorities in Brazil.