Beyond behaviour change

AIDS in Nepal: Communities Confronting an Emerging Epidemic

by Jill Hannum

AmFAR/Seven Stories Press

New York, 1997

USD 22.95 

The American Foundation for AIDS Research (AmFAR), funders of US-based AIDS work and an AIDS prevention programme in Nepal, chose the cover picture of the book under review to highlight the fact that, in contrast to the earlier Western association between gay men and AIDS, it is young women who are most at risk – worldwide and in Nepal.

A picture of a girl on a book about AIDS can only mean one thing in Nepal – girl-trafficking. But it is also the face of AIDS itself as it has been made known to the Nepali public through the vicious blame-the-victim sensationalisation of prostitution in the Nepali press.

Seemingly unaware of the uncanny resemblance this photo bears to the covers of popular tourist guidebooks, AmFAR has, perhaps inadvertently, also played on stereotypical Western images of an exotic, and erotic, Nepal. This is the Asian AIDS problem as seen from the West – one more poignant tragedy in the underdeveloped world.

Early AIDS prevention efforts in Nepal were met with puzzlement, at best, and more often than not, outright hostility. For many communities, simply to be targeted for an AIDS prevention project is all-too-fre-quently perceived as an accusation of collective immorality, given the kind of association AIDS has in the public mind. This defensive reaction is understandable, for more often than not it is elite outsiders who decide who need to know about AIDS while they falsely consider themselves to be safe merely because they are educated people.

From the perspective of NGOs, the challenge of AIDS prevention lies in figuring out how established international strategies can be carried out to make any kind of sense to their target communities. For how is a Nepali carpet factory worker, or a migrant labourer, or his wife, to understand warnings about a mysterious sexually transmitted disease with vague symptoms appearing years after infection? Especially when few of the Nepalis infected with HIV will ever know what is making them sick?

AIDS in Nepal is the first comprehensive published work on the AIDS issue in South Asia to describe these challenges. At first glance, however, the book appears to be a promotional piece for AmFAR, written in a relentlessly optimistic tone of American can-do-ism. Author Jill Hannum spent only a month in Nepal, rushing from place to place. For Nepalis and other readers familiar with Nepal, her trite cliches about beautiful, remote, impoverished Nepal are tiresome. The Nepali situation is packaged for international consumption through the eyes of a naive witness, fresh to the scene, recording what she is told.

Extensive quotes from individuals and NGO reports stand as unexamined evidence of the way things are (if a Nepali said it, it must be true, it seems). Lost in this format is any analysis of the complex politics of community development and the differences of class, caste and ethnicity that divide Nepalis when it comes to explaining why any development is so very difficult to achieve. Whose voice is heard? Whose account prevails?

Still, AIDS in Nepal succeeds in presenting the current standard assessment by international experts of the social conditions that underlie the epidemic. Compiled out of reports submitted by AmFAR-funded groups, the book chronicles the grounded experience of these mostly elite-run organisations as they grappled with the local and ever-so-human face of the insidiously-linked problems of poverty and discrimination. By demonstrating that vulnerability to HIV infection is one of the very real implications of the steep grades of inequality, the book does much to compensate for the fragmented, sensationalist, and often flatly inaccurate reporting on AIDS that has dominated the Nepali press.

Intended to showcase what is known as the "community vulnerability approach" – the progressive cutting edge in AIDS intervention – the book is being handed out at international conferences as an example for NGOs around the world.

This is ironic, because AmFAR itself was seen by many critics in Nepal to epitomise the kinds of arbitrary decisions and misguided policies so often foisted on the country by out-of-touch foreign development donors. From its seemingly abrupt entrance in 1993 to its equally sudden departure in late 1995 – only two years into its stated three-year programme – AmFARs initiative was surrounded by controversy.

In the early 1990s, not much attention was being paid to AIDS in Nepal. Government statistics showed only 114 persons as Hiv-plus at the end of 1992. Most of those who had heard of aids thought of it as a foreign problem restricted to Africa and the West.

But the World Health Organisation had already identified South Asia as the new epicenter of the epidemic, and both the World Bank and usaid had decided to make aids in Asia a priority issue.

"Pajerobaad"

In 1993, Nepal found itself flooded with donor assistance for AIDS programmes. That same year, AmFAR chose the country as the laboratory for its experiment in AIDS prevention as its vision was to concentrate resources in a country with a low HIV incidence but high risk for a future epidemic. Its generous budgets to NGOs would kickstart AIDS prevention work by setting up local groups to discover what worked in their communities.

With only a few loose guidelines coming from AmFAR, 17 NGOs (chosen for their "potential" rather than their "track record") were given free rein to come up with their own ideas about how and where to target prevention efforts. This approach was in marked contrast to the standard donor emphasis on programme objectives, targets, reporting, accountability and outcomes.

AmFAR is an organisation with its roots in the activist self-help groups that sprang up from the efforts of American gay communities to cope with the first wave of the AIDS epidemic there. AmFAR planners see NGOs as dynamic, community-based groups that could do what foot-dragging, morally conservative governments never would in the fight against AIDS. But these somewhat dogmatic working assumptions about the grassroots commitments of NGOs and the impossibility of working with government transferred awkwardly to the real politics of the Nepali "development" scene, enmeshed as it is in so-called pajerobaad (the proclivity of those in development, including NGOs, to drive around in Mitsubishi Pajeros and other luxury four wheel drives).

Views of the AIDS problem itself also diverged. AIDS is an unpopular social issue. Though few officials will publicly admit it, AIDS is thought of as a distasteful problem of prostitutes, perverts and drug addicts, of "bad people" who are not worthy of the scarce public resources available for public health. Why should this kind of money be given to NGOs for AIDS, when as far as anyone in Kathmandu could see, only a handful of Nepalis would die of it?

The view from AmFARs New York office could not have differed more. AIDS was their problem, and it was real. AmFAR staff saw the fight against AIDS as a pivotal human rights issue as well as a health issue. What they had in dedication, compassion and zeal, however, they lacked in international expertise. In the words of one former AmFAR employee, people at the head office assumed that "working overseas was the same as working in the US, except in a different language". It was Elizabeth Taylor, AmFARs celebrity sponsor, who pushed for the international programme in the first place. And when AmFAR as a whole lost some of its funding, the tiny international programme – then concentrated exclusively in Nepal and about to move on to Botswana – was the first thing to go. The NGOs and the communities they worked with were left in the lurch, scrambling to save their programmes.

AmFARs programme, despite its flaws, brought state-of-the-art expertise in AIDS prevention work to Nepal at a crucial time. Its philosophy stood as an alternative to the then prevailing orthodoxy of condom promotion. AmFAR encouraged the groups to look beyond scare tactics and moralising about sexual restraint, to the social conditions underlying peoples vulnerability to HIV infection. It supported projects such as literacy classes that did not solely focus on AIDS prevention. It asked the NGOs to tailor their interventions to specific target populations thought to be most likely to be affected by HIV/AIDS and to look at what support these groups really needed.

AmFAR required its groups to justify their work not in terms of numbers of condoms distributed or posters printed but by what they learnt in the process of trying out programmes. It used project implementation as a form of on-going investigation of the societal factors implicated in aids. All this was in line with the most progressive wing of AIDS intervention expertise – something AmFARs critics have not recognised.

More importantly, AmFAR forged a core of committed, knowledgeable people, most of whom continue to work in AIDS prevention efforts in Nepal. Several of the projects initiated under AmFAR auspices now serve as the template for other prevention programmes. By so visibly forcing the issue of aids on an otherwise complacent health sector, AmFAR arguably played a major role in creating an infrastructure with which Nepal can face the impending epidemic.

Politics of health

What AmFARs book depicts as a hope-inspiring success story is more realistically a partial success story that contains a more profound lesson about the politics of health. The risk- vulnerability approach to AIDS endorsed by AmFAR correctly emphasises that effective AIDS prevention does not come the moment a condom goes on a penis.

Disease prevention has to take the shape of social reform. Efforts to teach about AIDS come up against the sheer reality of the social inequalities that effectively trap so many people in conditions where "awareness" will not save them and "individual behaviour change" is not possible. From this perspective, AIDS prevention begins to look more like political activism aimed at revolutionary changes to the status quo of class and gender relations.

When this approach is injected into Nepal's development-oriented institutional mainstream, however, the results are mixed. Another kind of politics comes into play: the politics of the development business. Even the most socially uninspired development schemes play on the catch-words of poverty, gender, and empowerment. Diluted in this way, the more radical implications of the risk-vulnerability philosophy in AIDS intervention tend to get lost in the shuffle of business-as-usual project implementation.

Even the most visionary AIDS programme cannot buck the system or overcome the contradictions of Nepals class chasm. Radical community mobilisation is difficult to achieve at present in Nepal. The gap between the elite, urban-based advocates for AIDS prevention and the mostly impoverished people who are at risk is so great that it has been difficult for AIDS workers to convince targeted populations of the reasons to care about the risk of AIDS.

The ramifications of various intervention strategies have yet to be fully debated within the AIDS-related organisations in Nepal. How are certain populations, and not others, being defined as "targets" and are these the groups best targeted? Is the information about AIDS and its prevention being presented in a way that actually motivates people to reduce the risk to themselves and others?

The AmFAR-funded NGOs were among the pioneers of AIDS work in Nepal. If they made mistakes, some of them also found creative ways to begin to address the stigma and misconception that seem to accompany this particular virus. Their experiences are a stark illustration of the problem now being raised in aids work worldwide: prevention programmes that merely encourage people to change their behaviour leave unaddressed the social forces that severely constrain the range of actions open to them.