Experiences of working with endometriosis and the influence of menstrual policy

Williams, Victoria (2024). Experiences of working with endometriosis and the influence of menstrual policy. PhD thesis The Open University.

DOI: https://doi.org/10.21954/ou.ro.00099358

Abstract

This thesis explores how cis women navigate chronic and fluctuating symptoms of endometriosis in the context of UK employment practices and policies built upon ableist conceptualisations of time and embodiment. Explorations of endometriosis and employment highlight that many women are working with levels of pain which breach human rights standards or can be excluded from full participation in the economy. However, there are limited qualitative accounts of women’s lived experience of endometriosis at work, particularly across sectors. Empirically, my research draws on interviews and diary data from twenty one women working across twenty one UK sectors to address this. I apply a poststructuralist lens to explore the subjective meanings given to occupying a liminal space outside of constructed work norms. I develop the theoretical framework of endo time to identify how capitalist and androcentric constructions of normative temporality matter for women’s embodied and subjective experiences of endometriosis and employment. This conceptual approach explores the Othering of such experiences in a process of worker subjectification that disavows gender, disability and queerness.

My empirical analysis identifies how (i) the social organisation of work excludes and penalises people working in non-normative temporalities of episodic endometriosis disability; (ii) existing workplace practices and policies largely ignore and fail to accommodate the unique features of long-term and chronic illness; (iii) participants are therefore driven into socio-economic survival strategies that reproduce or resist workplace norms. As such, there remains a gap in protecting people with endometriosis at work. My thesis contributes practical and policy level discussions, such as the implementation of menstrual policy, to ensure the full inclusion of people with endometriosis in the UK labour market. This thesis also advances feminist and disability organisational theorising about the body, time, chronic illness, embodiment, and subjectivity by exploring disabled experiences of endometriosis at work as a temporally constituted phenomenon.

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