Facing stigma head-on

Rodney Rousseau is a student working towards an Honours BSc in biochemistry and sexual diversity studies at U of T. He is 25 years old, and grew up in a small town in Northwestern Ontario. He is also HIV-positive.

In the 1980s, headlines proclaimed that the spread of HIV/AIDS had reached epidemic levels. The wave of fear spread faster than the then-untreatable condition, and left an emphasis on prevention and hyper-vigilance in its wake.

Since then, medical professionals have developed treatments for the illness, and scientific knowledge on the subject has expanded significantly. However, misconceptions about HIV/AIDS remain prevalent in society. A 2012 survey by Ipsos Reid revealed that only 57 per cent of Canadians feel “reasonably well” informed about HIV/AIDS. This deficit in knowledge perpetuates fear and stigmatization, creating a cycle whereby society’s misunderstanding of HIV/AIDS only hinders its prevention.

 

Common misconceptions

In Rousseau’s experience, the majority of people know, at least generally, how HIV is transmitted, but certain social situations seem to override that knowledge. He describes, “[A]s soon as it comes to sharing a straw or a fork with someone there’s often a clear moment of hesitation. Or I’ll be asked, ‘You’re sure it’s all right?’”

In spite of his awareness of the potential for negative attention, Rousseau describes his status as HIV–positive as “a matter of public record.”

“I disclosed both my status and my sexuality to one professor last semester in an attempt to help her understand my academic needs… I regretted that decision almost instantly. The term was almost completely a back-and-forth of terse and non-supportive communication that lacked any appropriate amount of humility,” he says.

Rousseau adds that discussing being HIV-positive is generally not easy: “I’ve had the experience of planning to go on a date with a guy, disclosing my status, and then him saying something like, ‘okay, well, as long as we don’t have sex’ …or just flat out stop talking to me. Those experiences are really common.”

Negative reactions to disclosure reinforce the notion that being HIV-positive is something to keep quiet about, as Rousseau explains: “I’ve had people in my life tell me that I shouldn’t be open about my status — that it will cost me any future career options.”

There is also a belief that HIV/AIDS is no longer a matter for widespread public concern. “I think a lot of people in North America think [the AIDS epidemic] is over,” explains Scott Rayter, associate director of the Mark S. Bonham Centre for Sexual Diversity Studies. However, the reality is that the prevalence rate increases annually, as treatments enable individuals to live longer. Incidence rates — the rates of new cases — are also rising, especially in high-risk populations, such as men who have sex with men, Aboriginal communities, and, increasingly, women, who make up one quarter of new diagnoses in Ontario.

Advancements in the medical field impact representations of HIV/AIDS as well. Dan Allman, assistant professor at the Dalla Lana School of Public Health, explains: “We increasingly hear about how medical advances are transforming HIV into a chronic and manageable disease ‘like diabetes,’ as if a chronic and manageable disease [is] not something to prevent ­— as if somehow recasting HIV as a chronic disease will act to transform it, and the stigma associated with it, into something benign.”

Rayter adds that medical progress can eliminate the focus on preventative measures. “People aren’t thinking that it affects them, and if it does, then [they think] ‘oh well, there’s drugs now’ — there’s much less frank discussion,” he says.

 

Something we don’t talk about

Many HIV-positive individuals are scared silent by the potential repercussions of these misconceptions — which include rejection, stigma, and even criminal charges in certain circumstances.

When asked whether his experiences with stigmatization make him hesitant to share his status, Rousseau replies, “Yes and no. I do fear being stigmatized, but for me, I’d rather face that stigma head on than perpetuate it by being shameful.”

HIV/AIDS remains a taboo subject in North America, not because we lack the information or freedom to discuss it, but because we seem to be afraid to do so. Most people feel comfortable advocating for a future without HIV/AIDS, more support for patients, and increased funding for prevention and research. When confronted with HIV, however — whether it be meeting a diagnosed individual or encountering the potential for transmission in sex or drug use — we falter.

“We may be able to discuss HIV on social media, or walk in support of HIV, or wear a ribbon. Yet when it comes to talking about HIV in the moment… the nature of what HIV is and represents becomes transformed within intimate interpersonal contexts into taboo matter,” says Allman.

Allman attributes some of this reluctance to society’s tendency to label a subject taboo as a protective measure — as if not talking about it will somehow make it disappear. He explains that there is an association between HIV and behaviours that are categorized as deviant, “because of its association with blood, semen, and other body fluids, because of the behaviours and identities associated with it — sex, drugs, rock n’ roll — because taboos act, in society, often to protect some form of public good.”

Rayter draws a link between the stifled discussion of HIV and the increasingly individualized nature of public health, whereby individuals are ‘at fault’ for or ‘deserve’ the consequences of their actions. He adds, “Even the term Acquired Immune Deficiency Syndrome [sounds] like you went out and got it — there is this sense that you went out and did it to yourself.”

 

Rethinking awareness campaigns

Some challenges to raising awareness lie in the way information is being disseminated. Rayter says awareness campaigns need to be reevaluated. “Definitely. Both in schools and media campaigns — and looking at what messages are being put out there and what information people are taking [in],” he says.

“[S]tigma can prevent the uptake of prevention messaging,” Allman says. “In some ways to prevent HIV, we need to continue to find ways to prevent HIV stigma also,” he adds.

Unfortunately, the importance of being politically correct in prevention messaging often focuses on being universally inoffensive, rather than effective. One example is the Kisses 4 CANFAR campaign, featured in ads on the TTC, which aims to “kiss HIV & AIDS goodbye.” The vague subway ad images can be misunderstood as suggesting a causal relationship between kissing and HIV/AIDS transmission.

Allman explains, “Prevention messaging that is attuned to true cultural diversity, to the political sensitivities of funders and donors, to populations and individuals, some of whom will be living with HIV, such sensitization can water down messaging to the point of, if not irrelevance, perhaps ineffectiveness.”

This focus on sensitivity to public reception impacts the way in which individuals respond to disclosures of HIV-positive status. Rousseau describes, “I feel like people perpetuate the stigma of HIV by feeling sorry for those that are infected. Often the first thing people say to me is ‘I’m sorry,’ or, ‘That’s terrible.’ As far as my experience goes, sure it sucks, but it’s nothing to pity me over.” He explains that, alternatively, there is more value in asking productive or inquisitive questions.

Awareness campaigns are important, but they only fulfill their purpose if HIV becomes something that can be freely and safely discussed in public forums. The experience of HIV is unique to each individual impacted by it — and as such cannot be summarized into a single, all-encompassing campaign.

The strongest voices in the fight against HIV/AIDS often come from those with the most intimate experience — people who are diagnosed as  positive and those who are close to them. Allman, who teaches a course on HIV prevention research at U of T, says, “I can tell you that in such a class, little has as much impact as when a student turns in her or his seat to face the rest of their class and says, ‘I am HIV–positive.’”

Allman describes that those four words can transform a subject that, for some, embodies fear and make it instead a symbol of courage.

Amid the misconceptions about the disease, there is an imperative truth: there is no cure for  HIV. It can be prevented if people are aware of the risks and take precautions against them — but this can only happen when society ends the self-sabotaging cycle of fear and stigmatization.

Allman reflects, “In the absence of a vaccine, in the absence of a cure, prevention remains the road ahead. Let us not allow fear to limit how that road rises up to meet us.”

With files from Ipsos Reid and Casey House; infographic data from Public Health Agency of Canada and Canada AIDS Society.

 

In conversation: Rodney Rousseau

The Varsity: Do you think there is enough public school education about HIV? How can it be improved? What information do you think is lacking the most? 

Rodney Rousseau: I finished high school a few years ago, so things may be a bit different now from when I received sexual health education. I was taught about abstinence when I was in high school. Abstinence-based sexual health education ignores the needs of those at risk for HIV, and quite frankly, just doesn’t work.

I also believe that there isn’t enough information being taught in history classes. First of all, the women’s rights movement is justly part of history education, but how is the LGBT rights movement just ignored as if it didn’t happen? And then HIV/AIDS? We’re now talking about an epidemic that is decades old and has a rich history, how are young people not learning about that history? It’s important.

 

TV: There have been some large steps taken in terms of medical advancements for HIV treatment in the last [thirty] years. Do you think awareness has taken a backseat to medical successes? In your opinion, is there too much information that remains unspoken? Do you feel that society is too quick to define the individual by the condition?

RR: Well, my first response to this question is: what is awareness? Awareness of HIV transmission? Awareness of what it’s like to live with HIV? Prevalence? Incidence? Prevention?

I don’t particularly think that HIV awareness and medical successes are at odds with each other. I think the field of HIV/AIDS work overall tends to realize the necessity of interdisciplinary work to help overcome this health issue. Both medical and social sides of HIV/AIDS work are under-funded, in my opinion. I think that what we need to look at, though, is how we can bridge these two sides together and create more impactful outcomes for those living with, and at risk for, HIV.

 

TV: How, if at all, does HIV impact your life as a student? Does it play a role in your chosen studies, or in any extracurricular/volunteer involvement? Do you have physical symptoms that factor into your days?  

RR: Coming back to school as a newly diagnosed full-time student was tough. I ended up reducing my course load a bit. I was consistently having a tough time sleeping, so that effected my productivity, of course. I would say that most of my health symptoms are mental-health-related. Tiredness and worry play into a bit of a vicious cycle that sometimes makes it hard to focus or recall information efficiently.

I was interested in HIV before I became infected, so it was already a big part of my studies. I did a 400-level HIV stigma project last year before I was diagnosed, and I work part time in an HIV immunology lab on campus.