Researching the effects of surveillance on women living with HIV

Researching the effects of surveillance on women living with HIV

September 2015

While media headlines focus on individuals prosecuted for alleged HIV non-disclosure, we know that the impacts of criminalizing HIV non-disclosure go far beyond those who are formally charged. I was therefore delighted to learn in April that our 3-year community-based research (CBR) proposal to the Canadian Institutes of Health Research had been approved. Titled “Women under Surveillance: Criminalization’s creep into the health and social care of women living with HIV,” this research project will explore how the criminalization of HIV non-disclosure is affecting the everyday lives of women living with HIV.

In 2013, I met with Dr. Saara Greene to fill in some legal details related to an article she was writing. In no time we were intensely discussing how the criminalization of HIV non-disclosure feeds discrimination and misperceptions of women living with HIV, and how HIV was, at the same time, becoming “informally criminalized” — that is to say, that women living with HIV felt like they were criminals, constantly being watched and constrained, even if they were not doing anything prohibited under the law.

Fast forward to the CAHR conference in St. John’s in April 2014, when Saara and I (along with co-authors Allyson Ion, Adriana Carvalhal, and Mona Loutfy) presented a poster titled “Judging Mothers:  Criminalization’s Creep into the Health- and Social-Care of HIV-Positive Mothers.” Saara and I were now formally collaborating, and the links between my legal advocacy work and her social work research were becoming increasingly (and excitingly!) clear.

The CBR proposal was submitted by Co-Principal Investigators  Saara Greene, School of Social Work, McMaster University; Alison Symington, Canadian HIV/AIDS Legal Network;  Marvelous Muchenje, Women’s Health in Women’s Hands; and Angela Kaida, Faculty of Health Sciences, Simon Fraser University. The design of the study benefitted from numerous professionals working in health, social and legal sectors, including women living with HIV. It has as its starting point a recognition that Canada’s current socio-legal climate — in which HIV non-disclosure prior to sex is aggressively criminalized and people living with HIV are monitored to ensure they pose no risk to others — raises important questions about stigma, discrimination and the surveillance of women living with HIV through legal, health and social care systems. Of particular interest are the ways in which criminalization and surveillance exert influence over the identities of women living with HIV and the choices they make (e.g., as lovers, mothers, friends, etc.). The methodology of this research is particularly exciting. We will be using arts-based methods — including body-mapping and storytelling — to collect qualitative data. Body-mapping workshops will be held in Ontario, Saskatchewan and British Columbia, and a multidisciplinary team is being assembled in these three provinces.

At a time when significant medical advances make it possible for women living with HIV to live long and productive lives, and to become pregnant and give birth without transmitting HIV to their partners or babies, it is deeply problematic that negative attitudes towards HIV-positive mothers persist. These attitudes may be due in part to the fact that all women living with HIV are frequently subjected to social surveillance. Our CBR project will help us to understand and respond to the effects of surveillance by exploring how the criminalization of HIV non-disclosure and its underlying assumptions creep into the lives of women living with HIV through their interactions with health and social care providers, and others.

Stay tuned for updates as the project unfolds.

Alison Symington
Co-director, Research and Advocacy