Every year the CSA produces a calendar or diary to showcase aspects of its work, using cutting edge design and production to produce high quality work, which can stand up to aesthetic scrutiny. For the 2012 calendar, highlighted here on our website, we chose the theme (Re)views. This gave us an opportunity to revisit our annual AIDS Reviews, think pieces which challenge orthodoxy in the HIV field, in effect to "re-view" them through the lens of the latest thinking. But this theme also allowed us to re-visit and showcase the work of Gisele Wulfsohn, a well known South African photographer who had provided us with the photographs of the early AIDS Reviews. Gisele was widely known here and abroad for her photography, much of it exploring themes of social justice, exclusion and marginalisation, and it seemed a logical moment to celebrate her work and her collaboration with the CSA over many years. So the 2012 calendar was also a re-view of Gisele and her body of HIV photography. Sadly, Gisele died in December 2011 of the cancer she had been diagnosed with some years ago, but not before she had seen, and loved, this calendar we bring to you on our website. We invite you to enjoy the texts - which link to the original and downloadable AIDS Review - and the images and legacy of Gisele.
Centre for the Study of AIDS
When the Centre for the Study of AIDS (CSA) opened in 1999, Nelson Mandela’s presidency was coming to a close, the AIDS epidemic was peaking, life-saving antiretroviral medications (for prevention of mother-to-child transmission or treatment for those living with HIV) were available to very few South Africans, and tertiary responses were largely biomedical and narrow in focus.
The CSA was established at the University of Pretoria (UP) to offer a unique holistic programme, including volunteer, education and counselling services for students; inter-faculty engagement on HIV research and curriculum integration; community engagement initiatives and, through research, the development of new social theory to understand the drivers and outcomes of AIDS more effectively.
Starting with a staff complement of eight in 1999, the Centre’s staff has expanded and contracted over the years, in line with shifting priorities, but also reflecting its position as an externally-funded programme. The CSA now employs 20 people, whose backgrounds include sociology, psychology, history, gender, development, law, science, publishing, marketing and project management.
The changes in the shape and form of the epidemic and approaches to it, both public health and political, have provided an interesting and complex backdrop for the CSA’s work. While the Mbeki years were a dark time for the South African AIDS response, today there is a strong consensus between government and much of civil society about AIDS plans, programmes and policies. The current minister of health has won support across many sectors and there is urgency, political will and potential funding for AIDS work. There is talk of the epidemic levelling out but many challenges remain in preventing new infections and delivering treatment and care to all who need it. And it is still true to say that stigma, shame and silence remain.
One key challenge in this new space for AIDS work is to find ways to think beyond the obvious, beyond premature or artificial consensus, and to resist the temptation to put too much faith in biomedical technologies and public health approaches, which risk minimising the role of “the social” and “the structural”. The CSA, and indeed UP, needs to be willing to keep on asking the complex and difficult questions beyond the status quo and to remain ahead of the curve, as befits a place of higher learning.
So a “culture of critique” has remained a driving impetus in the CSA’s work. Partly to meet this need, the AIDS Reviews were launched in 2000. The HIV and AIDS world is filled with experts and professionals – many anti-intellectual or supportive of the tried and tested – who set the scene for AIDS interventions and ideas, but push a particular line or agenda in relation to testing, treatment, gender, prevention, education and care.
While these ideas may be effective and have some success, AIDS is a far more complex issue than many of these interventions would suggest. Indeed, it is this over-simplification of issues that may have contributed to the failure of some interventions and the reluctance of people and communities to become involved in HIV and AIDS issues.
Experts are sometimes under some pressure to commodify their skills and to persuade politicians that they are correct. Often the main goal is not to tell the truth, or to give an alternative view, but rather to maintain the status quo and go with the conventional, rather than to generate new ideas, take risks and challenge conventional approaches. The CSA, in contrast, has positioned itself, and in some cases has been positioned, as an observer on the margins, developing a unique identity in the South African AIDS landscape.
Manuel Castells suggests a typology of three identities through which narratives of meaning are constructed. He talks of a legitimising identity – found in the dominant institutions of society these identities provide a moral or ethical base for maintaining social power. Secondly, resistance identities are built on a sense of exclusion from the institutions of civil society and often create strong boundaries of inclusion or exclusion and thus work to “exclude the excluders”, often being more concerned with proclaiming than changing. Then project identities are associated with social projects of change, producing “subjects”. These are not people, rather they are discourses, ideas, ways of thinking. “They are the mental and emotional focus through which identity and meaning are sustained in consciousness; and, especially in the case of project identities, the subject forms the basis for action, study and discussion.”
The CSA believes, or rather hopes, that its legacy will be its project identity – building and promoting new discourses, new ideas and new ways of thinking. The AIDS Reviews have been an indelible part of this project and have contributed to voices from the margins of power, patronage and policy.
To the edge
This was the first AIDS Review, written by Hein Marais and asking about what went wrong in the response to the HIV and AIDS epidemics. In 1990 South Africa had an infection rate of less than 1%, yet by 2000 the infection rate was over 20%, and the epidemics were well established in the fabric of our society. The rapid rise in infection was to set the scene for many of the paradoxes that have accompanied these epidemics. Although infection rates seem to have stabilised somewhat, South Africa still carries a very high rate of current infection and of new infections, a high number of people in care, large numbers of orphans and high rates of stigma. While the country can point to one of the most comprehensive treatment programmes, many people who need treatment still cannot get them, treatment provision in public clinics is precarious, and there is treatment failure and treatment fatigue.
This Review traced the sometimes inexplicable response to the epidemic by the South African government. Having fought a battle against apartheid and racial discrimination, the new government seemed unable to address HIV and AIDS with the same commitment and fervour – seeking instead refuge in denial and racism. The 2000 Review set a standard for the reviews that followed – of asking tough and difficult questions – not necessarily seeking answers, but publicising the controversies and the debates in public forums.
Twelve years on we still need to ask questions about what went wrong. South Africa has impressive legislation to support and protect people living with HIV and AIDS. There have been different versions of a national AIDS plan, usually spanning five years and aiming to include all arms of government and civil society. A great deal of time is spent in consultation. Yet little time is devoted to debate and questioning AIDS orthodoxies appropriate for a time, but abandoned as soon as it becomes apparent that they are difficult to implement or seem to be ineffective. There is still a need to control information and responses in accordance with particular views of the epidemic. Instead of being bold and creative, successive governments have vacillated or retreated into biomedical prevention technologies that fail to acknowledge the forces that drive an epidemic of this nature.
It appears that we have perfected the response of paying lip service to gender violence and physical abuse without tackling the real issues of patriarchy and paternalism, attending to human rights without seeing that many of the technologies threaten rights, and paying lip service to citizenship, agency and gender, while trying to roll out testing and circumcision. As we commented in 2000, there is a crisis not of intention but of will and a paucity of social theory.
It seemed possible that responses to HIV and AIDS could unite our severely divided society. On reflection it seems that many opportunities have been missed to see our society through the new and challenging lens which HIV and AIDS offered.
Who cares?
Writing in his introduction to Who Cares? in 2001, Tim Trengove Jones argued that “the politics of HIV/AIDS can never be a disinterested pursuit of care. Behind the language of universal human rights lies in turn a politics of care, one that promised to use a medical and economic apparatus to initiate a regimen of human well-being … more usually glossed as the need to provide the new holy trinity of prevention, treatment and care, it is this underlying conception of a new order – promising and threatening at once to those in the rich and poor countries alike – that keeps alive controversy and renders problematic the entire field of care.”
Trengove Jones’ implied warning seems, with hindsight, to be remarkably prescient. No one disputes that enormous advances have been made in the range of antiretrovirals now available in increasing quantities across the globe, albeit unevenly; that there have been strides in other biomedical technologies, such as treatment as prevention; and that even a reasonably therapeutic vaccine and a working vaginal gel seem less elusive. With HIV screening tests that have a reduced window period and the scale-up of circumcision for prevention, it seems that we are well on our way to “an HIV-free generation”.
Yet there are voices of discontent – voices which suggest that a “regimen of human well-being” may become regarded as something enforceable rather than an entitlement. The “good” citizen is one who tests early and annually, initiates treatment before she taxes her immune system and the medical machinery with a low CD4 count, adheres to the medicines faithfully, preferably has no further children and certainly never has sex again without a condom. The “real” man is one who circumcises – he achieves a social marker of manhood through pain and is cast as a good man: one who protects himself and his family.
Ethicists are divided on some of these issues and recent conferences in South Africa have heard that “remaining ignorant of your HIV status is not a human right”. While acknowledging that no one should be forced to test, the argument here is that one can be forced to know one’s HIV status, even if one chooses to keep the result private, because by not knowing one is deprived of the right to health.
What seems critical, then, is to reflect on whether the right to care, and its realisation, is morally and ethically benign, or whether it reflects various regimens of power. When international donors and global funds with their own public health agendas become, in effect, transnationals, shaping government policies and programmes, questions need to be asked about unintended consequences. In effect there is a new global order, to create globally a bio-political citizen whose identity is informed both by having a virus and belonging to a therapeutic community across national boundaries. Their identity document is not a passport but a clinic card.
Whose Right?
Whose Right?, written by Chantal Kisoon, Mary Caesar and Tashia Jithoo, was one of the first publications to look at what constitutes a rights-based approach to HIV and AIDS, and to critique the international guidelines on which such an approach could be based. It set up various debates between individual and group rights, between African and Western understandings of human rights, between fair and unfair discrimination, and between the enforcement and limitation of rights, as well as how this could be applied in the context of HIV and AIDS.
Whose Right? asked two questions: who is right in determining how individuals and communities should be treated in an epidemic of this nature, and whose rights should be enshrined. It also asked whether legal structures and laws could address issues of stigma and of discrimination. The Review asked these questions through an investigation of the human rights records of six other African countries along with South Africa, and an investigation of the ways in which national laws protected or abused individual and group rights.
These issues remain important debates. Providing treatment is a crucial right but needs to be coupled with socio-economic rights to adequate health care and to sufficient and proper nutrition. The right to privacy is essential to protect people who are taking treatment, should they decide not to disclose their status publicly beyond the health system. The right of young people not to be coerced into testing also remains fundamental. The rights to housing and to work are both important rights in helping lessen the impact of HIV and AIDS. HIV and AIDS can still, when the rights to equality and non-discrimination are violated, take advantage of the social, political and economic vulnerability this creates amongst women, children, migrants, gay people and prisoners. A tension still exists between a rights-based approach and a policy-based approach. Increasingly we see a policy-based approach enforced with an attendant turning away from the protection of individual rights and a tendency to see socio-economic rights as qualified or lesser rights, with a greater emphasis on civil and political rights. The real and underlying causes of HIV are often seen as socio-economic issues and are seldom dealt with in an adequate or consistent fashion.
The international human rights response remains crucial to HIV and AIDS work. Various policy documents remain important tools for working with policy makers and donors, and help to create a recognition of rights as essential to policy decisions. These international documents are influential in shaping the response of many African countries, to move towards protecting people living with HIV and sharpening debates about the rights of sexual preference and identity, confidentiality, and the protection of women and children. They remain essential as some African countries have debated the criminalisation of HIV transmission and made homosexuality a crime.
(Over)extended
In much of the literature dealing with HIV and AIDS and the impact on young people and families there is an assumption that the extended family is able to look after and support ill and dying family members, as well as care for young people left orphaned and distressed by the deaths of members of their families and their parents. In (Over) extended, Vanessa Barolsky challenged this view by asking whether families are not already over-extended by a great many factors besides HIV and AIDS. Extended family networks are burdened by unemployment, migration of family members, poverty, poor education, and reduced opportunities for employment and further education. Indeed, she asked, does the extended family as it is described in much of the AIDS literature even exist?
Barolsky challenges the notion of “family” and looks at how this has changed. She critiques the romance of the notion that families will be able to cope with the influx of ill, dying and traumatised relations. She also asks whether the extended family has not been largely destroyed and that policy is made or decisions reached based on nostalgic notions of culture, rather than a firm understanding of current realities.
These questions remain as pertinent today as they did when this Review was written. There is still no active engagement with the notion that “child-headed households” are wrong – morally, ethically and in terms of social justice. There is no real engagement with the fact that many young people are deprived of love, support, nutrition, clothing and education because families that have taken them in are unable to cope with these extra demands. There is no active debate about how deaths from AIDS affect family lives, income and domestic violence. There is too much reliance on nostalgic accounts of elderly women having to care for many young people at a time when society should be caring for them. There is not enough debate about the abuse of these young people – physical and sexual abuse but also abuse that derives from neglect, stunted growth and a lack of education.
There is no debate about what kind of parents these young people will make when they are adults, given their lack of experience of warm and nurturing family life. There are no debates about how else we might house, love, feed, educate and support young people, so that they can be closely connected to their kinship without being put them at the mercy of strained financial and emotional resources. There are, of course, stories of immense caring and successful nurturing but we cannot understand how these situations work unless we really start to comprehend what it means to our society to have so many young people’s lives disrupted emotionally and physically. These young people are valuable as much as they are vulnerable, and we need to treat them as such.
(Unreal)
Thirty years after the first cases of AIDS presented among gay men in the United States, the epidemic still raises critical questions about gender, sexuality and justice. This is particularly true of South Africa where so-called “corrective” rape of lesbian women in our townships, against a backdrop of high levels of sexual and domestic violence, has become, if not an “epidemic”, then certainly a worrying trend.
(Un)real was published in 2004. Since then male involvement in addressing gender power struggles has seized the imagination of the HIV world. The notion has taken hold in the academy, if not entirely in the field, that patriarchy not only polices women – including lesbian woman who threaten heterosexual male access to female sexuality, and gay men who present alternative views of what a “real” man is, but also presents a warning to other heterosexual men who are in any way different.
Scholarship on men and masculinity today is firmly rooted in the idea that masculinity is socially constructed, fluid and dynamic, and that many forms of masculine expression exist – hence the term “masculinities”. However, an idealised hegemonic or ruling masculinity is still said to dominate, varying across and within countries, mingling with local ideas of masculinity, and producing new expressions of what it means to be an “acceptable” man. Yet it would be true to say that even the notion of hegemonic masculinity has come under scrutiny, not matched by similar explorations of “femininities”.
The combination of new ideas and increasing uncertainty about the stability of “gender” has been matched by a broader social anxiety about change and modernity. Across parts of Africa we have seen a rise in homophobic rhetoric and a resistance to notions of fluidity of sexuality and gender, informed by religious, cultural and nationalist discourses.
Male anxiety about changing roles, and diminished opportunities to “perform” socially and culturally “acceptable” masculinity (even if this idea of an “acceptable” masculinity is itself unstable) have been well articulated by academics. They have argued convincingly for a blend of social, economic and political exclusions which result in men turning to specific ways to express and assert themselves and their dominance over women – ways which put them and their partners at risk for HIV. When a man becomes HIV positive and ill, as the writer of (Un)real, Kgamadi Kometsi, suggested, this “illness seems to interfere with the script of being a ‘real’ man, where men are expected to be invulnerable”. Recent research in South Africa suggests that men who are living with HIV are finding new ways to reclaim their “damaged” masculinity, permitted to do this partly by the reviving power of ART. Treatment may render them “strong” again, able to return to their social position, albeit with the intention to challenge other men around their practices, while unconsciously propping up their own problematic practices!
The signs that some men are changing – or that they are at least open to the idea of change – are matched by resistance to change. Other men often do not support those who wish to adapt their practices. Given the mixed messages men receive about masculinity and the impact of social constraints on change, the ideal of gender equity and power sharing remains elusive.
Buckling
Buckling, written by Hein Marais, was a Review of a different kind. Called an ‘extraordinary review’, it was longer than the annual reviews. Where others deal with a particular issue, Buckling examined the political implications of HIV and AIDS, traced the history of the South African response and looked at surveillance information, and how this could be understood.
It discussed the wider impact of HIV on households, families and individuals, painting a picture of social formations which could at times be described as slowly buckling under the impact of the epidemic. This Review considered orphans, the fate of the elderly, single households, the impact of home- and community-based care, and how these demands could consolidate and strengthen community identity and belonging, while fracturing the fragile basis on which communities and belonging were built. It looked at how the epidemic blamed the ill while exonerating the well. It described a redefined understanding of gender, power, accountability, political will and democracy. The economic impact was starkly stripped bare as more and more South Africans experienced the harsh reality of poverty, exclusion and deprivation.
Buckling pulled together the themes and ideas of previous Reviews and offered a critical look at how we should measure the impact of the epidemic: what had we learned from the past? Could we understand the lessons of the past and create a future that protected and supported us all, as we negotiated our way through this most fascinating of all epidemics and the many social, political, economic and personal ramifications it would produce?
The points of debate in Buckling are as pertinent today as they were in 2005. There remains a silence around how this epidemic affects the fabric of society. There is still denial about how HIV and AIDS will restructure our society and how we will need to create new notions of family, community and identity. We do not plan for the consequences of a lowering of life expectancy and its impact on the economy. We do not yet understand the ways in which treatments may change how the epidemic moves and shifts. While concentrating on the biomedical aspects of the epidemic we do not pay enough attention to how it changes the ways in which people act, think and construct their lives. We are also not cognizant enough of how the wider economic consequences will affect us all.
We haven’t properly understood how and why some communities, families and individuals are able to manage the epidemic and why others buckle. We have no clear ideas about why we still have such high levels of stigma and shame, and reluctance to openly engage with multiple sexualities. We do not yet understand this epidemic and what it is doing to all of us South Africans.
It is still the case that an “epidemic this intense, layered atop a reality this unjust, imprisons vast numbers of us in a kind of eternal present, unmaking the ability and perhaps even the desire to imagine a different, better world”.
What's Cooking?
What’s Cooking argued in 2005/6 that South Africa is a society that reproduces within itself patterns of malnutrition while simultaneously producing enough food to feed its populace. The Review asserted that a disproportionate proportion of blame has been accorded to the HIV and AIDS epidemics in causing and perpetuating this state of affairs. Instead, it questioned the economic policies of the post-apartheid state and especially the structuring of policies wholly in the context of the market and in line with the requirements of international financial bodies. It asserted that the market on its own could not reconstitute South Africa’s racially skewed socio-economic conditions, with the market being geared for profit, not for redistribution. It warned that frustration with the slow pace of land reform would encourage radical populism.
Indeed, by 2012 populist politicians have succeeded in harnessing some of these frustrations. Their support base is composed mainly of the “have nots”: people who have not benefited substantially from post-apartheid neo-liberal economic policies and who have not felt its mythical “trickle-down effect”. At the top of their agenda is the burning land question, as well as access to and redistribution of other resources. Politicians demand that the “willing buyer-willing seller” principle of land redistribution be jettisoned in favour of a programme based on expropriation without commensurate compensation. The spectre of Zimbabwe haunts South Africa.
What’s cooking emphasised that HIV and AIDS are but one facet of a comprehensive developmental quandary in South Africa. It discussed at length other equally prominent aspects such as hunger and malnutrition that, together with HIV and AIDS, constitute a multifaceted challenge to the general well-being of the nation.
In 2002 the Department of Agriculture published an Integrated Food Security Strategy for South Africa. In this document, government set the goal of eradicating hunger in the country by 2015. If this is to be realised, policy direction will have to undergo rapid changes and new priorities will have to be set. The issues raised by What’s cooking more than five years ago are even more pertinent and more intensely contested today than they were then, and the building of a truly different future remains a distant outcome.
So what’s cooking? Clearly, still not enough.
Bodies Count
In Bodies Count, Jonathan Jansen debated whether schools are good places for HIV and AIDS education to take place. Should teachers be expected, as part of their work, to do HIV and AIDS education and to take on the responsibility of looking out for orphaned and distressed children?
Jansen argued that those in power want schools to respond to every conceivable situation. Schools and teachers have to address the skills shortage, unemployment, drugs and violence, and to serve the community. Somewhere in this mix education also has to take place in traditional subjects and prepare young people for the world outside of school. How can a dysfunctional system where the very basics of teaching and learning and fail young people also take on HIV and AIDS, and accompanying complex social and political issues? Six years after the Review, we are no further in resolving this dilemma. Schools are regarded as being in the frontline for HIV prevention, but the training of teachers in HIV and AIDS work is largely stereotyped and conventional. The spectre of ABC campaigns still haunt educators and an undercurrent of morality still holds sway. Educators are not trained to understand and work with young people’s sexuality, they do not have the tools to “educate desire”, and the sexual abuse of young people by teachers, their parents or their communities is not addressed aggressively. There are still too many acounts of sex being traded for grades and promotion. There is still a deep stigma attached to teachers who disclose living with HIV. Finally, there are no clear messages about how young people living with HIV should be educated and supported.
Most problematic of all has been the recent attempt to test school children for HIV. Premised erroneously on the belief that testing constitutes prevention, this was a component of the campaign to get 15 million people tested in South Africa. The schools campaign represented mere number crunching. Had it gone ahead it would have raised ethical and social issues that, given the current state of education and teaching, would have had potentially devastating effects on the relationships of young people with their parents, their teachers and their peers. Likewise, moves to criminalise the sexual activity of young people work against effective HIV and AIDS education. We are still nowhere close to having an effective HIV and AIDS education and prevention programme in schools. Schools are not used to teach tolerance, support and dignity for people with HIV, and to create an accepting environment that would enable young people to really understand this epidemic.
Stigma(ta)
When he wrote Stigma(ta) in 2007, Patrick Eba commented not only on the seeming intransigence of stigma, but also on the failure of governments to address it meaningfully. Stigma reduction interventions have remained the le parent pauvre (the poor parent) of AIDS responses – yet another inadequate intervention in a sea of funding thrown at AIDS programmes across the globe. Part of this failure derived from the fact that proper understanding remained out of reach about what stigma was, how it operated and what could destabilise its effects. In some ways, this is still true in 2012. Eba asked if and whether responses to stigma could move from the margin to the mainstream. This metaphor is still useful today in asking broader questions about social cohesion.
A brief glance at recent references to HIV stigma is discouraging. A November 2010 UNAIDS report found that in Lesotho, Mozambique and Senegal, stigma and discrimination continued to be barriers to citizens who needed a range of health-care services, including HIV testing and treatment. In August 2011 it was reported that widespread fear of stigma and discrimination left many people with HIV in Swaziland feeling despondent and putting their lives on hold. Swazi women with HIV decided not to have children, some believing that marriage was also no longer an option for them. A South African study published in the same year found that urban black women believed that people who were thin probably had HIV. A large body size was regarded as desirable to protect against stigma, shame and discrimination associated with HIV.
The UNAIDS report also alluded to laws which criminalised HIV infection and same-sex sexual conduct, and listed stories of violence against, and murder of, individuals who were suspected of homosexual orientation and practice. Migration was hampered by HIV status and punitive legislation regarding sex work was commonplace.
It would seem, then, that discriminatory attitudes and actions towards people with HIV, or indeed even towards those suspected of being HIV positive, are still widespread, despite the belief that with the scale-up of testing and treatment, stigma will abate. There are signs that stigma is lessening – although a separate debate needs to be held about the role of internalised guilt and shame. Given that we have seen a rise in xenophobia, increasing resistance to gender equity, and a resurgence of localised forms of homophobia and gender policing, it would seem that HIV stigma needs to be seen against a broader backdrop of social panic and anxieties about daily survival.
This is rich terrain for populist politicians, nationalists and the religious right, ready to seize the political moment to find a new target for “othering”, a new scapegoat on whom to blame social ills. It is impossible to separate HIV stigma from the fragile materiality of everyday life and issues of power and class. Stigma interventions need to be reframed as integral to building social cohesion in general, indivisible from the project of “nation building”.
Balancing Acts
Balancing Acts looked at the tension between the need to contain an epidemic and the need to protect human rights. Carmel Rickard investigated the relationship between a public health approach to the epidemic and a response based on developing policies that protect and enhance rights. As the epidemic has unfolded, various positions have been adopted to strengthen prevention and care, although there is very little evidence of their effectiveness. Many of these positions have the potential to violate human rights and to affect how people are able to deal with HIV and AIDS in their personal lives, workplaces and communities. Rickard highlighted that prevention technologies and medical interventions can only be effective when the lived realities and the lives of people affected by this epidemic are well understood. What, she asked, are the forces that operate in society? What are the social, cultural and sexual beliefs that people have? How are these shaped? How do people understand death and its causes, and the process of dying?
Rickard pointed out the need for good social scientific research that would allow researchers to inform policymakers about how potential interventions might work and how people might respond to them: good research that allows an understanding of the ways in which individual identities are shaped and research that shows how people come to understand interventions. In the years that have followed the publication of this Review, these concerns have become ever more acute. With the drive for mass testing and circumcision there has been little patience with the voice calling for a better understanding of what such interventions would do to relationships, communities and the wider society. There were well-expressed concerns about social engineering and the dangers of making assumptions about how people would respond or change their sexual behaviour after an HIV test or after circumcision. These concerns are drowned out in the push for orthodoxy and social control.
When problems arise in communities and individuals, the fault is then ascribed to the person rather than to the intervention, because there is no coherent social understanding. Failure to understand that biomedical interventions often run counter to individual agency has led to people turning away from health services and health professionals because they are apprehensive of the consequences of receiving care. Many people do not have sufficient legal capital to challenge biomedical interventions, or to assert their rights to question such interventions or to refuse them.
HIV and AIDS have challenged how we provide health care and how we protect the rights of all people – those uninfected as well as those who are living with HIV. The epidemics are more complex and subtle than public health policy will acknowledge. Trying to enforce a uniform and coercive approach to prevention and care will not address the many fascinating social and political issues that surround these epidemics.
Magic
The 2009 AIDS Review was an ethnographic exploration of the ways in which people in rural South Africa understand and negotiate the efficacy of antiretroviral medication. By looking at ARVs through the lens of gossip, rumour, witchcraft beliefs and “the power of words”,it set out to chart the complex terrain and interconnected “webs of meaning” spun around treatment and testing in the remote northern corner of South Africa. Biomedical understandings co-exist with “folk models”. They are not necessarily mutually exclusive, but without understanding the connections between the two – and how they change over time – we fail to grasp the multifaceted reasons why people decide to take, or not take, antiretrovirals.
Since the Review was published, there has been a flurry of exciting findings emanating from the scientific community relating to ARVs. At the 2011 annual conference of the International AIDS Society in Rome, it was announced that giving ARVs to people as soon as they tested positive for HIV could reduce their likelihood of transmitting the virus by over 95%. This is a truly remarkable finding, and may have huge ramifications not only for people living with – and without – HIV, but for academics too. It could be argued that this is signifies real progress in the extent to which we can claim to manage HIV transmission on a grand, epidemiological scale.
But what does all this mean? Can we now breathe a sigh of relief because of scientific advances? Clearly the revelations from Rome are good news: they tell us that natural scientists are developing more comprehensive understandings of the ever mutating virus. But can we really“test and treat” our way out of this epidemic? For a growing faction in the medical sciences, government bodies and policymakers, the answer is “yes”. Senior figures in the scientific community now publically champion the biomedical approach over any other, renouncing social science as “the fluffy stuff”, which, by implication, gets in the way of the real research with hard statistics that can be counted, and where success that can be measured.
Yet the recent increase in biomedical understanding of HIV has also heralded a significant reduction in the influence of social science research on the international AIDS research community. Measuring success in quantifiable, quantitative terms has taken over from the search for understanding the multitude of motivations that put human beings at risk of contracting and transmitting HIV. Meanings have been eclipsed by measurements.
Where does this leave proponents of the so-called “fluffy stuff”? If it is indeed the case that we can test, treat and snip our way out of this debacle, then is there a need to situate human behaviour in historical, social, cultural, economic and political contexts? The current predicament lies not in accepting that the recent flurry of biomedical success does represent leaps forward in terms of understanding the virus, but in convincing the medical fraternity, government structures and policymakers hat understanding the success or failure of scientific advances lies squarely in the complex, messy, and often unmeasurable realms of the fluff.
Click here for the individual calendar pages and photographs: http://www.csa.za.org/blog/item/112-my-hiv/aids-photo-journey-%E2%80%93-gisele-wulfsohn
