The mothers: contesting health-illness status and cultural authority in the age of AIDS

João Paulo Gugliotti () and Richard Miskolci
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João Paulo Gugliotti: King’s College London, Department of Global Health and Social Medicine
Richard Miskolci: Universidade Federal de São Paulo, Departamento de Medicina Preventiva

Palgrave Communications, 2024, vol. 11, issue 1, 1-11

Abstract: Abstract Despite the relevance and prevalence of research that produced knowledge about stigmatised groups and communities throughout the 1980s and 1990s, in the United States, studies that investigated the relationship between HIV/AIDS, intersectional stigma, and health-illness status among groups considered hegemonic are incipient—i.e., heterosexual, and white groups, who did not suffer stigma due to sexuality and race/colour, for example. In this study, such a gap is examined in order to observe the effects of stigma in non-exposed communities. Additionally, the article (i) explores the formation of a pioneering group of caregivers in New York City, the Mothers of Patients with AIDS (MPWA), created in 1986; and (ii) analyses narratives about health disease from a collective care agenda established by middle-aged and elderly mothers dealing with the challenges and needs of adult children and people with moderate and high degrees of dependence. This study is part of a larger project that investigated the emergence of non-profit organisations and gerontology care groups in the context of the HIV-AIDS epidemic in New York in the 1980s and 1990s. Documentary research was developed in the Florence Rush collection, made available by the Arthur and Elizabeth Schlesinger Library at Harvard University’s Radcliffe Institute for Advanced Study. The selected materials bring together qualitative empirical sources from reports, personal histories, and interviews conducted by Florence Rush and other mothers, social workers, and health professionals. As the results attest, the narratives produced by Florence Rush’s interlocutors during the AIDS health crisis make it possible to understand how social and cultural dynamics of recognising the disease did not result in autonomous, individual, and objective processes for exposing the pathological state. The strategic use of the term “cancer” instead of “AIDS” as an umbrella definition, and one less demarcated by aspects involving gender and sexual behaviour, evidenced the sociality of the illness. Conclusions show how negative representations were associated with AIDS—perceived as harmful, immoral, or deviant behaviours — and produced new meanings and demands among patients who feared stigmatising classifications in the midst of sexual panic until the commercial availability of the antiretroviral cocktail in 1997.

Date: 2024
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DOI: 10.1057/s41599-024-02795-y

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