Viviane Namaste, Concordia research chair in HIV/AIDS and Sexual Health, seeks to educate and help communities often marginalized by the mainstream health-service system.
Concordia research chair in HIV/AIDS and Sexual Health Viviane Namaste on the steps of the Simone de Beauvoir Institute.
Not long ago, a Montreal woman concerned about protecting herself against sexually transmitted diseases (STDs) went to a local HIV/AIDS prevention agency to find out what she had to do. The agent on the other side of the counter gave her a pamphlet about men having sex with other men and told her to adapt the material to her situation.
This is the type of misinformation Viviane Namaste discovered through her research as an associate professor at Concordia’s Simone de Beauvoir Institute and research chair in HIV/ AIDS and Sexual Health. “Our research shows that there is little information for STD- and HIV/AIDS-prevention directed at women,” Namaste says. But there’s a pressing need for that information.
“The symptoms of syphilis, for instance, manifest themselves in different locations in a woman’s body compared to the body of a man,” Namaste examines the gaps in STD- and HIV/AIDS-prevention education and services for overlooked communities, including transsexuals, bisexuals and swingers, or couples who exchange sexual partners and who may also engage in group sex.
She has made it a personal crusade to identify the needs of each of these groups, provide them with enhanced to information and lobby for improved government health policies and resources.
In June, Namaste received the 2009 Canadian Award for Action on HIV/AIDS from the Canadian HIV/AIDS Legal Network and Human Rights Watch for her years of research and activism. Jenn Clamen, MA 07, nominated Namaste for the award. Clamen, who has worked with Namaste during the course of her own advocacy on behalf of sex workers, says she admires Namaste’s exceptional skills as a research leader and activist. “Viviane elegantly nudges and guides us in our search and production of knowledge,” Clamen says.
Putting needs first
Namaste points out that most research and its subsequent recommendations fail to address the information and resource needs of marginalized communities because researchers often aren’t posing the right questions. “Most HIV/AIDS research focuses on behaviour, asking, Have you had sex? Have you used drugs? Have you shared needles? Then it tries to extrapolate what people need from that rather than just asking them directly,” she says.
Namaste and her Concordia research team begin interviews with the question, ‘What do you need?’ “Part of what I do in my research is ask, ‘What kind of information is important to you?’ ‘How should we orient it?’ ‘What should it include?’ ‘How should it look?’ ‘What don’t you like about what you see in existing education?’”
Several years ago, Namaste developed a guide for field researchers that deliberately steered clear of questions about a person’s sexual behaviour. When researchers began using the guide, they quickly discovered their new questions were generating new findings. “A number of people we spoke to said they were hesitant about being interviewed until they realized that we weren’t going to ask them about their sex life,” she recalls. “This suggests that because most sexual-health research draws on people comfortable enough to talk about their sex life, there’s a biased sample that excludes others.” She adds that researchers heard some unexpected responses, too. “We asked, ‘If you had one word to describe your sexual orientation, what would that be?’ And one person said, ‘Well, it’s perfect.’ This tells us people don’t necessarily make sense of their lives with the identity categories that we tend to have around sexuality,” Namaste says.
Research results into action
Namaste’s community activism began in the early ’90s through CACTUS Montréal, a downtown centre that offers drug users sterile needles, along with advice and other information. In 1995, Namaste co-founded Action Santé : Travesti(e)s et Transsexuel(le)s du Québec, a Montreal-based, community-health project that provides transsexuals with better access to healthcare information and services.
In 2002, Namaste arrived at the Simone de Beauvoir Institute. One of her goals has been to apply research findings in concrete ways. “That’s the real nugget for me in terms of data: identifying the gaps, then having the grassroots discussion based on an absence of information to start thinking about how we can create the knowledge that will lead to the required action,” she explains. “We need to link our prevention work to services so people know where to get an HIV/AIDS test or be checked out if they have a concern.”
As a result, two years later, Namaste and her team launched Polyvalence, a research project focused on the HIV-prevention needs of people with bisexual identities or behaviour. Polyvalence’s bilingual website ( polyvalence.ca ) displays an array of HIV/AIDS- and other STD-prevention information, including online resources, publications and recommendations. Namaste helped secure funding for Polyvalence from Canada’s Social Sciences and Humanities Research Council.
The posters reads, “I know how to protect myself with a man, but with a woman…”
Tamara Vukov, PhD 07, worked as a researcher on several of Namaste’s projects at Concordia, including Polyvalence. “Viviane spearheaded Polyvalence despite encountering many closed doors at first,” Vukov says. “When she took up her position at the Simone de Beauvoir Institute, she really helped to make this groundbreaking project happen.”
Vukov adds that Namaste’s dedication to her work is inspiring. “Namaste challenges the standard institutional frameworks rooted in the marginalized communities that have been excluded or pathologized by academic research, institutions, the government and public,” she says. “She has shown me and others the importance of having a long-term perspective when you’re working on social change, so you can keep challenging what needs to be changed, pushing strategically without backing down.”
Part of Namaste’s advocacy has been on behalf of women. Namaste points out that HIV/AIDS- and STD-prevention campaigns, for instance, still target heterosexual or gay men. Several years ago, she attended a workshop in Montreal organized by a bisexual group in collaboration with a mainstream HIV/AIDS agency. “The bisexual group members said to the agency, ‘We have sex with men and women, so please make the workshop relevant. But the organizers presented information pertinent only to men,” Namaste relates. “So, as often happens, the women left without the information they had been seeking.”
Namaste’s research also reveals that some doctors are telling women that they aren’t at risk for STDs if they have sex with other females, which is definitely false. In some cases, STDs, such as herpes and trichomoniasis (a single-cell parasite), are more common in women engaging in sex with women or men.
Members of all the communities Namaste studies express a desire to have health information made more readily available. “For example, they have told us they want information in community newspapers, like The Mirror and Voir, or on posters at dépanneurs,” she says. “The public thinks bisexuals must be underground, but they’re buying groceries, making photocopies and getting their shoes fixed at the same places as everyone else.”
Working on societal fringes
Namaste’s research shows that public health policy excludes many of these marginalized groups as well. “For example, it’s been known since the mid-1990s that transsexuals, like other marginalized populations, are greatly affected by HIV/AIDS,” she says. “Yet this population is not mentioned in Canadian state policy on HIV/AIDS.”
Transsexuals can run into all kinds of difficulties—everything from having an issue about the name on their healthcare card to having trouble obtaining access to hormone treatments and surgery, Namaste adds. They can also experience distinctive medical issues. “For instance, a side effect of HIV medication is lipodystrophy, or a redistribution of body fat, that causes your face to become thinner and women to lose fatty tissue from their breasts and hips,” Namaste explains. “So the medication improves people’s health but can put male-to-female transsexuals at real odds with their physical appearance and sense of self.”
The poster reads, “My girlfriend says I can’t catch an STD from her. My boyfriend is clueless about these things. What do you think?””
Swingers form another group whose needs have largely gone unaddressed. “Swingers number in the thousands in Montreal and yet nobody is working in the field of HIV/AIDS awareness or public health with this community or has thought it relevant to ask if we have links with these people,” she says.
Here, again, Namaste’s research shows that women face particular risks. “For instance, the available HIV information tells a man to wear a condom for self-protection but if he’s having group sex with a number of women, he can transmit an STD from one woman to another if he doesn’t wear a new condom each time.”
Namaste stresses that providing proper access to STD- and HIV/ AIDS-prevention information and resources is a matter of life and death for all us, not just marginalized groups. “There’s little HIV/AIDS information in the mainstream. Yet, people in a monogamous relationship in the suburbs are at risk if their partners are having undisclosed relations and not protecting themselves and their partners,” Namaste says. “So it’s essential that we all become better educated.”
Julie Gedeon, BA 99, BA 01, MA 09, is a Montreal-based journalist.
