Text[il]ing voices: an arts-based feminist inquiry into narratives of agency, resistance, and stigma among Ugandan women affected by sickle cell

Abstract

In this study I explored how textile art functions as a counter-discursive space for the articulating the narratives of Ugandan women who challenge systemic barriers manifested through sickle cell-related stigma. Drawing on feminist disability theory and post structuralist thought, I foreground the lived experiences of women affected by sickle cell, who often navigate socio cultural blame, reproductive surveillance, and social exclusion. These dynamics, I argued, can be exacerbated by Uganda‘s proposed mandatory premarital sickle cell screening policy, which risks reinforcing biomedical narratives and gendered stigma that disproportionately hold women responsible for genetic or hereditary conditions. Through narrative inquiry, I examined the covert and overt forms of resistance enacted by these women. Their narratives challenged stereotypes and myths surrounding courtship and marriage, sexuality, reproduction, and motherhood, reframing sickle cell stigma as a source of agency, resilience and empowerment. Using text[il]ing as a arts-based research approach, I translated the agentic narratives into textile artworks. The resulting artworks do not reflect victimhood, but instead embody the women‘s resistance and reimagine their identities beyond dominant cultural and biomedical framings. In doing so, this research expands the potential of textile art as a feminist research praxis, offering inclusive and interdisciplinary pathways across visual art, gender, disability and public health discourses.