Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV
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SPECIAL SECTION: INNOVATIVE KNOWLEDGE TRANSLATION IN SEX RESEARCH
Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV Allison Carter1,2 · Florence Anam3 · Margarite Sanchez2,4 · Juno Roche5 · S. T. Wynne2 · Just Stash2 · Kath Webster2 · Valerie Nicholson2 · Sophie Patterson6 · Angela Kaida2 Received: 4 February 2020 / Revised: 11 August 2020 / Accepted: 13 August 2020 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Despite the fact that HIV can be controlled with medication to undetectable levels where it cannot be passed on, stigmatization of women living with HIV persists. Such stigmatization pivots on stereotypes around sex and sexism and has force in women’s lives. Our aim was to create an inspirational resource for women living with HIV regarding sex, relationships, and sexuality: www.lifea ndlovewithhiv.ca (launched in July 2018). This paper describes the development and mixed-method evaluation of our first year and a half activities. We situated our work within a participatory arts-based knowledge translation planning framework and used multiple data sources (Google Analytics, stories and comments on the website, team reflections over multiple meetings) to report on interim outcomes and impacts. In our first 1.5 years, we recruited and mentored 12 women living with HIV from around the world (Canada, Australia, New Zealand, Kenya, South Africa, Spain, Nigeria, and the U.S.) to write their own stories, with the support of a mentor/editor, as a way of regaining control of HIV narratives and asserting their right to have pleasurable, fulfilling, and safer sexual lives. Writers published 43 stories about pleasure, orgasm, bodies, identities, trauma, resilience, dating, disclosure, self-love, and motherhood. Our social media community grew to 1600, and our website received approximately 300 visits per month, most by women (70%) and people aged 25–44 years (65%), from more than 50 cities globally, with shifts in use and demographics over time. Qualitative data indicated the power of feminist digital storytelling for opportunity, access, validation, and healing, though not without risks. We offer recommendations to others interested in using arts-based digital methods to advance social equity in sexual health. Keywords Women · Sexuality · Relationships · Feminism · Knowledge translation · HIV
Introduction Art as Activism FUCK POSITIVE WOMEN. This message—set on an image of a feminist cross-stitch—was plastered across the streets * Allison Carter [email protected] 1
Kirby Institute, University of New South Wales, Level 6, Wallace, Wurth Building, Sydney, NSW 2052, Australia
2
Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada
3
Medécins Sans Frontières, Johannesburg, South Africa
4
ViVA Women, Positive Living Society of British Columbia, Vancouver, BC, Canada
5
CliniQ, London, UK
6
Health Education North West, Liverpool, UK
of Toronto, Canada during the weeks leading up to December 1, 2011, as
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