The Positive Side

Summer 2015 

In Search of the Invisible Man

Straight men living with HIV

By Sophie Wertheimer

When AIDS first became a public health concern in the early 1980s, many people tried to turn away from it and pretend it didn’t exist. Since that time, people with HIV have fought relentlessly for visibility, rights and services. But one group of people with HIV has remained largely invisible and has rarely been named in the history of this modern epidemic: straight men.

Epidemiological invisibility

Though the Public Health Agency of Canada’s most recent statistics (2013) attributed 19.6% of HIV cases in men to heterosexual contact, straight men seem to have been largely left out of discussions about HIV and the services established to respond to it. Instead, straight men and the programs delivered to them are subsumed under other categories: injection drug users, Aboriginal communities, African Caribbean and black (ACB) men, or men from countries where HIV is endemic. G., a 50-year-old HIV-positive man from Ottawa, says: “It’s not that heterosexual men are not at risk, it’s that we’re not seen as a risk group. We’re a subgroup of other groups.”

Like everyone, straight men have multiple, overlapping identities, but in the world of HIV some of these identities are given a great deal of attention while others are overlooked. Since his HIV diagnosis more than 20 years ago, G. has been struggling to shake off a label that doesn’t—and never did—apply to who he is. “I’m not considered heterosexual. I’m considered a drug addict,” he says, referring to the way that epidemiological statistics reflect how HIV is transmitted. “I don’t like having that label put on me because that’s not who I am. I may have gotten the virus that way but to have to live with that label for my whole life because of one incident all those years ago is really unfair.”

Their epidemiological invisibility may be contributing to the lack of appropriate services for straight men with HIV. Dr. Tony Antoniou, a pharmacist at St. Michael’s Hospital in Toronto, is one of the few researchers working with this population in Canada. His research grew out of his clinical work: “We would see these men who became engaged in care very late in their illness and we realized how little support there was for them. Most of these guys were going through this completely alone.” Patrick, a man in his late forties who lives in Toronto and was diagnosed with HIV in 2009, agrees: “There’s no real sense of community among straight men with HIV.”

Over the last few years, Antoniou has organized focus groups and community events with HIV-positive straight men across Ontario to identify priorities. A key priority is to have straight men recognized as a group in its own right. “The thing that these men want to achieve more than anything is to have their sexual identity recognized,” Antoniou says.

Invisibility prevents diagnosis

Invisibility not only has the effect of isolating straight men living with HIV but also limits the possibility that a straight man will be diagnosed in the first place. Greg Riehl, a registered nurse who works with indigenous communities in Regina, notes that while HIV testing should be routinely offered, many of those performing the tests assume that “if you’re a heterosexual man, you’re doing things properly [in terms of HIV prevention] or you’re not one of the target or at-risk populations.” As a result, testing isn’t offered to these men.

Fanta Ongoiba, executive director of Africans in Partnership Against AIDS (APAA), and Winston Husbands, director of research at the AIDS Committee of Toronto (ACT), also find that black men are being tested for HIV and diagnosed less routinely than black women: “We know that in terms of heterosexual transmission, there are more black men living with HIV than black women,” says Husbands. “But black men are not being tested and diagnosed for HIV to the same degree as black women, so that’s a real problem.”

The burden of HIV criminalization

While straight men tend to be invisible in much of the story of HIV in Canada, one area where they clearly appear is in the sphere of the criminalization of HIV non-disclosure. This point comes up frequently among the straight men participating in Antoniou’s research. He and the men he works with have observed that portraits of straight men with HIV in the media are often monstrous: “They are depicted as being threats to their community, as being these shady people who are deliberately infecting women.”

G. takes Antoniou’s argument a step further. “Heterosexual men are under a lot of stress in terms of what it means to be male and heterosexual,” he says. “We are looked on as predators and potential rapists and criminals. And at the same time we’re not trained to discuss our feelings or to explore other aspects of our personalities, our humanness, because of a fear that it may be compromising to our masculinity.”

Black men may constitute the majority of those who have been accused and tried in Canada, and they have been particularly vilified by the media. ACT’s Winston Husbands says that the idea perpetuated by media accounts “that black men are difficult to work with in terms of service provision, that they are out of control, gets in the way of understanding black men’s experiences.”

Masculine identity

For many men, being a wage earner is a source of pride rooted in their sense of masculine identity. But living with HIV often means living with reduced financial means and, in some cases, becoming dependent on monthly government disability cheques.

Luc-Edgard Douyon, coordinator of Projet Info-Hommes (the Men’s Information Project) at GAP-VIES, a Montreal HIV organization working primarily with Haitian and immigrant communities, emphasizes the importance of the masculine role of breadwinner to the straight men that he works with: “If a man cannot take care of his financial commitments, then there is something missing. A ‘real’ man must be independent and face his commitments, both on the family and financial front.”

Dating and relationships

Relationships with women emerge as a key priority in the research that Antoniou has been undertaking with HIV-positive straight men. He notes that “there’s a big focus on developing meaningful relationships with women, but there’s also this fear that if I find an HIV-negative woman, how do I tell her about my HIV without losing her?”

Two days after being diagnosed with HIV, Patrick attended a social event in Toronto for straight people living with HIV. Though he was terrified at first, this experience helped to normalize HIV in his mind and he realized that living with HIV didn’t mean “glowing in the dark or having two heads.” A year later, he took over the responsibility of organizing these events with the aim of continuing to offer straight men and women living with HIV the opportunity to meet in a casual atmosphere.

The limited finances that many people with HIV have to contend with can restrict their opportunities for socializing and developing meaningful relationships. Patrick noticed this pattern when attendance at the social events he was organizing in restaurants started to drop off. “What I came to realize was that about half of the men and women didn’t have a lot of money. I kept hearing that some just couldn’t afford to come.” Despite these barriers, he knows of at least one successful meeting to have come out of these events: “At one of the parties I held, I met a girl. To this day she’s my girlfriend and we have a son together.”

Disclosure and confidentiality remain important concerns for straight men with HIV even once they are in relationships and have families. Antoniou notes that the fathers he has been working with “worry about the stigma [of HIV] being transferred to their children.” In fact, his newest research project is examining issues related to fatherhood for men who are living with HIV, an area that has seldom been addressed in Canada or internationally.

Creating services

Straight men with HIV may need help and support, but it is difficult to find. As GAP-VIES’ Douyon notes, “Every program is designed either for gay men or women. Heterosexual men are really left behind in terms of interventions offered to them.”

G. agrees: “In all this time, I’ve never had any outside help and it’s only by sheer force of will, and with the help of my wife, that I have managed not only to stay healthy but to keep on with the sometimes arduous medical regimens that people with HIV have to undergo.”

When asked what services would look like for straight men who are living with HIV, G. is momentarily at a loss: “I wouldn’t even know where to begin. I’ve made do with so little over the years.” But on further reflection, he identifies a number of services he would find useful, including employment services, social gatherings and exchanging HIV treatment information with peers.

Recognizing the importance of straight men with HIV connecting with one another, a growing number of organizations have recently started to offer activities to this underserved population. This has included the creation of support groups, opportunities to socialize, as well as activities like APAA’s annual summer BBQ for straight men, their partners and families.

Patrick says that a casual approach is key to providing services to straight men. “Men are generally more like lone wolves than women. When they’ve got a problem, they’re more inclined to hide away than go out and talk about it. So I think this is a really good way, having social events where you’re going to have fun. As a side benefit, you get to talk to people who understand you, make some friends and become less isolated.”

Researcher Antoniou urges service providers to think about how straight men relate to one another. “The best ways to reach these guys may not be through meetings at agencies. Non-traditional venues or activities like a bowling night may be more effective.”

Recognizing that services may be more successful if they meet men “where they’re at” has also led to the development of innovative HIV prevention programs. For example, GAP-VIES does outreach in barbershops and parking garages and with airport taxi drivers in Montreal. Douyon explains: “They play dominoes or cards while waiting for the planes to arrive and for new clients to come in, so we use that opportunity to talk to them and to conduct prevention activities. We distribute condoms, brochures, promote testing and we also demonstrate how to put on a condom.”

HIV nurse Greg Riehl notes that working with soon-to-be fathers offers another interesting opportunity for reaching out to positive straight men. “As we’re identifying women with HIV through prenatal testing, what better time to engage expectant fathers and bring them into care? They can be role models for their sons further down the line.”

Engaging male vulnerability

Slowly but surely, straight men are carving out a space for themselves in the story of HIV in Canada, one that goes beyond the limited stereotypes and narratives of what it means to be a man in our society. Antoniou observes that “for some men, it has been trying to get on the boards of ASOs, volunteering, trying to get some visibility…trying to get the attention of people in their communities who might be able to help them.” G. believes that learning from other communities may also be helpful. “Women with HIV were really good at getting organized, and maybe they could mentor us, which would be great.”

Winston Husbands and Fanta Ongoiba both insist that “instead of taking the idea that ‘straight men do not want to engage’ for granted, we have to find out what that is all about. There is some truth to it, of course, but what kind of expectations are men putting on themselves and what kind of expectations are societies putting on them?” Through their work, Husbands explains, they have tried to demystify the stereotypes “that black men are hard, they can’t show emotion, they’re ruthless and reckless.” Husbands has found that, as a result, men are acknowledging and engaging their vulnerability.

G. agrees that engaging straight men’s vulnerability is key. “Men are always told to not express their feelings but this is precisely what we need to do. If men want to grow as human beings, we need to understand that our roles need to be expanded. And that comes with learning to ask for help.”

Resources for Straight Men

These organizations offer support groups and/or activities for straight men:

Sophie Wertheimer is a Regional Health Education Coordinator at CATIE. She works in the Quebec region and francophone communities in other parts of Canada. As a child, she wanted to become an ethologist and study animal behaviour. Life took a different course and she has been working in the field of sexual health and HIV for the last 15 years. She regrets nothing; after all, the human is a pretty fascinating animal.