In the 30 years since scientists discovered that the human immunodeficiency virus, or HIV, causes AIDS, more than 35 million people have died as a result of the disease and in 2014, around 35 million people in the world were living with HIV.
Advances in treatment mean that for those with access to medical care, infection with HIV is a chronic condition to be managed rather than the short-term death sentence it once was.
But as people on virus-controlling medication are living longer with HIV, what does this mean? Dr Thomas Strong, a lecturer at Maynooth University ’s Department of Anthropology, has been looking at social perspectives: do prevention programmes stigmatise people with HIV? Do laws relating to HIV transmission portray people with the virus as inherently dangerous? And how are people with HIV creating their own solutions to forming sexual partnerships?
Dr Strong’s interest in the area was piqued when he was studying at Reed College. “I fell in love with anthropology,” he recalls. “My BA thesis was on HIV risk in relation to blood supplies. That is how I first became interested in medicine in its social context, and in social understandings of risk.”
Working as an ethnographer on a project with gay male youth at the University of California, San Francisco for several years, Strong was acutely aware of the changes that were happening in HIV in the mid-1990s - particularly the advent of ‘combination therapies’. “I very clearly remember that moment—people were asking, ‘is it a cure?’,” recalls Dr Strong. “It didn’t turn out to be a cure, but it enabled people to survive with the virus.”Since then, biomedical research has shown that even with therapy, living long-term with HIV can increase the risk of other problems, such as heart problems, bone-thinning and cognitive issues.
But what about the social side of living with HIV as a chronic infection to be managed?
“As an anthropologist I am always interested in the social dimension,” says Dr Strong. “I was wondering what’s going to happen with people who survive, what kind of social life will they have?” Dr. Strong looked at HIV prevention campaigns as illustrating how people with HIV are understood by experts, and how the relationship between people with HIV and others is “governed.” He conducted interviews with advocates and “social marketing” advertisers in several sites, including California and east Africa, about their attempts to develop new ways of thinking about prevention.
One of the issues that was becoming clear to him from his observations was that prevention campaigns could be seen as stigmatising people with HIV.
“Primary HIV prevention is usually about telling people not to get infected with HIV,” explains Dr Strong, “and what has emerged in places like San Francisco and Nairobi is that the constant drumbeat of ‘don’t get infected with HIV’ leaves HIV-positive people wondering ‘what if I am already infected with HIV?’ A lot of HIV-positive people and their advocates believe that those messages of primary prevention are implicitly suggesting that they can never have sex again, they will never be able to live a normal life, they are left out of the picture.”
Campaigns such as the ‘HIV stops with me’ initiative rolled out in parts of the US and Africa promoted the idea that people with HIV need to be incorporated into the message, notes Dr Strong. But again, the element of stigma was there.
“In some campaigns, there were images of a person in ‘sexual congress’ with a poisonous insect, or images of a person with a target over them, giving rise to the idea that it’s the job of people with HIV to protect others and that they are essentially dangerous.”
The matter boils down to a logical problem of how to incorporate HIV-positive people in prevention efforts without stigmatising them, says Dr Strong, and he outlines how a more inclusive campaign would think of prevention as a challenge that joins HIV-positive and HIV-negative people together. Dr Strong has used some of his perspectives locally as a Director of Ireland’s Gay Health Network.
But the area of prevention still remains challenging: “I find it’s a real logical problem - how do you say ‘HIV is unfortunate, it’s a bad deal,’ without making HIV-positive people feel like bad people, like failures?”
Antiretroviral medications also impact prevention efforts because supression of the virus reduces infectiousness. “We need to track how prevention today means bridging the divide between clinics and communities in new ways,” he remarks.
Dr Strong incorporates these questions into his work with his students, recently supervising two student-led projects on the experiences of people living with HIV in Ireland. In 2012-13, Maynooth University student Keith Murphy focused his BA thesis project on gay men. “Keith found that despite education efforts, stigma remains a defining experience for people with HIV. Often gay men face HIV-related stigma mostly from within their own community.”
Another important trend has been the criminalisation of HIV transmission - around the world hundreds of people have been arrested, prosecuted or convicted for potentially exposing others to HIV.
Dr Strong describes how the issue has particularly burgeoned in the US, Canada and Northern Europe, though many countries in Africa are also introducing laws too. He notes that these laws have also been criticised by advocates who see them as counterproductive — the issue is open to ongoing debate.
“Although HIV transmission could be prosecuted under existing statutes, such as ‘offences against the person’ or assault, new laws specifically targeting HIV are being passed. HIV advocates think that singling out HIV in law like that gives stigma the whole force of the state, saying that people with HIV are fundamentally dangerous, reckless,” he says.
“A lot of HIV advocates are not necessarily opposed to the idea that there could be prosecutable infections, but they are worried out the implications of having specific laws targeting HIV.”
Since people can be held criminally-liable only if they know their status at the time of a sexual encounter, could it also encourage people not to know their own HIV status, he asks. “One of the main provisions of many of these laws is mandatory disclosure in sexual encounters - so people are asking maybe it’s better for me not to know.” In 2009, Dr Strong organised a workshop at Maynooth, the first of its kind in Ireland, looking at the intersection of law and science in ‘HIV criminalisation.’
In yet another prism through which Dr Strong looks at the social ramifications of being HIV-positive, people most definitely do find out their status, and it becomes a way of stratifying partners.
In what is called ‘serosorting’, HIV-positive people seek out sexual partners with the same HIV status. “Serosorting has been emerging in places that have lots of people with HIV - if you and your partner are both HIV positive, you don’t have the difficulty of disclosing your status to a potential partner or the anxiety about transmitting the virus,” explains Dr Strong. He notes that HIV-positive couples may choose not to use condoms, raising the question of other sexually transmitted infections, and it’s a controversial area.
“As an anthropologist I am not necessarily endorsing these, I am just asking what it means. Too often experts consider public health ramifications before considering what these relationships and practices mean for people themselves.”
In his work he has seen the practice growing in areas of the US and Africa. In Nairobi he met a matchmaker - herself HIV-positive - who introduces HIV-positive potential partners to each other.
“There’s a very real question around whether this could be an effective prevention strategy,” says Dr Strong. “Experts first began to look carefully at serosorting in San Francisco, where there was a spike in syphilis infections, but there wasn’t a concomitant spike in HIV infection. People hypothesised that serosorting could explain why these epidemiological markers which had been tightly-linked were becoming uncoupled.”
While some argue that the stratification of serosorting could compound anti-HIV stigma, the practice could also be understood as a way in which HIV-positive people are creating a new social setting for themselves against a backdrop of prevention and criminalisation that paints them as invisible or dangerous, according to Dr Strong.
“We don’t know enough about what is going on with this—why are people doing it, what are the networks, what are the signals that people use to communicate status and what does it mean? That is research that remains to be done,” he says. “What I am finding from the people that I’ve talked to in any setting is that what is a great misfortune and a stigmatising social status can become an opportunity for a new kind of intimacy.”
While prevention challenges, criminalisation, and ‘serosorting’ have drawn the attention of scholars and experts in many places, Dr Strong brings them together to illustrate competing ways of defining the social experience of people with HIV.
Overall he is interested in how people living with HIV are imagining their futures: “One is a sort of marginalised future where you are not part of the public, and you don’t really have a normal life,” he says. “There’s another in which you are forever scared of being criminally prosecuted. And then, with serosorting, there’s one in which you are creating a different kind of world with other folks in the community. Looking at these trends allows me to focus on what I think of as the social ramifications of surviving, or ways in which the misfortune of HIV infection is given meaning.”
Giving gifts, viewing vitality, witnessing witchcraft
Dr Thomas Strong speaks passionately about his work as an anthropologist in Papua New Guinea, where he has spent years living in a highland village, first for his PhD research at Princeton, and most recently in 2013.
His project there looks at local ideas about misfortune and the body. Having studied the cultural meanings associated with blood donation in US settings, the literature guided him to the Melanesian country.
“Melanesians are famous in anthropology for their systems of ceremonial gift exchange. It is a part of ritual life - they honour their kin and ancestors - and it has to do with sustaining human vitality,” explains Dr Strong. “It’s a complicated symbolism, and they think of it as though they are exchanging parts of themselves, in a sense parts of their own body. So I drew analogies with blood donation and transfusion.” Intrigued, Dr Strong moved to the Asaro valley, and studied people’s ideas about vitality, maturation and strength.
“The old rituals where young boys were turned into strong and powerful men have been lost,” he explains. “So I was looking at what are people’s ideas now, and I found this amazing discourse - men say they are shrinking, that they are smaller, they have lost this vitality of the ancestors. They say present generations are becoming smaller and weaker. I connected this to a whole experience of modernity and ideas about culture loss.”
In recent years, this local concern for diminishing vitality has emerged in growing worries about a plague of mystical violence. There has been a surge in accusations of witchcraft and in attacks on those accused of witchcraft.
“Whenever someone dies or grows ill, people begin to suspect that witches are involved,” Dr Strong says. His research turned toward ways in which people interpret illness and death and how people in Papua New Guinea assign meaning to misfortunes.
Dr Strong has also contributed to efforts to address surging violence against accused witches, participating in a landmark 2013 conference at the Australian National University in Canberra on the issue. You can listen to his presentation here.
While Dr Strong has been studying the social aspects of living with HIV, he continues his work in Papua New Guinea, which he sees as being a “life long project.” “People everywhere interpret illness and misfortune in culturally-shaped ways. So analysing patterns of witchcraft accusation in Papua New Guinea is connected for me to thinking about HIV criminalisation and prevention in Europe and the United States.”
“To me it’s all to do with the cultural politics of risk and responsibility, of life and vitality,” he says.