Theses defended

Chroniqueers. Time, care visibility in queer subjects with chronic illnesses

Mara Pieri

Public Defence date
February 19, 2021
Doctoral Programme
Human Rights in Contemporary Societies
Bruno Sena Martins e Elia AG Arfini
This thesis analyses narratives of young LGBTQ+ adults with a chronic illness. The research is based on 24 narrative interviews conducted in Portugal and Italy between 2016 and 2019.

First, the research aims to explore to what extent the experiences of chronic illness and the self-identification as LGBTQ+ interplay with multiple forms of oppression. Referring to the theoretical framework of crip studies and queer studies, it scrutinises how heteronormativity and able-bodiedness (re)produce norms that affect the perception of bodies both in the private and in the public space. Secondly, the research investigates whether the combination of chronic illness and LGBTQ+ identification in the context of Southern Europe reveals anti-normative (re)productive subjects and a different understanding of human rights from an intersectional lens. Finally, it aims at understanding which practices of time, care, and visibility are put in place to deal with the pressures of heteronormativity and able-bodiedness. Taking intersectionality as a reference, it interrogates what other multiple belongings interfere in the experiences of interviewees, such as class, gender, cultural capital, and education. Moreover, through the analysis of personal narratives, it analyses how interviewees make sense of their identity and to what extent practices of resistance correspond to political claims in this sense.

The research contributes to queer studies, the sociology of health and illness and critical studies of human rights by highlighting the intersections of heteronormativity and able-bodiedness and proposing a queer-crip understanding of time, visibility, and care.

The thesis is divided into three sections. The first (chapters 1 and 2) lays the theoretical foundations through a discussion of the existent literature in the sociology of health and illness around chronic illness and the theoretical shift provided by crip studies; it also analyses the contributions of queer theories on identity and time. The second part (chapters 3 and 4) describes the socio-political features of the Italian and Portuguese contexts concerning LGBTQ+ rights and healthcare. It also outlines the methodology chosen and the challenges encountered during fieldwork. The third part (chapters 5, 6, and 7) provides the analysis of the data through a closer look to three main macro-themes: intimacy and the construction of a significant relationship; the negotiation of care, both in informal and formal networks; the relation with the public space, in particular with work and activism. The dimensions of analysis regarding time, care, and visibility are transversal to all the empirical chapters.

The thesis finally discusses the possibility to consider a political subjectivity named "chroniqueer" that epitomises the LGBTQ+ experience of chronic illness as transformative of conceptions of time, care, and visibility, and, ultimately, of practices of human rights.

KEYWORDS: illness, sexuality, LGBT, care, human rights