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Enhancing HIV/AIDS Policy Interventions

Chapter Eight

Lessons from lived experiences at a fishing village in Uganda

8.1 Introduction

The social groups which have so far proven to be most vulnerable to HIV infection are those which have long faced discrimination and stigma, blame and stereotype labels, or have suffered economic hardships due to austere macro-economic and neo-liberal policies and have limited social services. Evidently, lakeshore people are disproportionately represented among those infected with HIV/AIDS. This may not change fundamentally as long as focus is placed on prevention intervention through generic approaches for education and behavior change as the immediate solution to the AIDS crisis. The hegemonic paradigm that largely informs most of these approaches is flawed, narrow and linear. While elements of this paradigm are perhaps essential to our understanding of individual human behavior, its commitment to the ideology of individualism and consequent blindness to broader political and economic issues limits its utility when weighed against the lived experiences of lakeshore people. An integrated approach is therefore necessary, to take cognizant of both individual cognitions as envisioned under this paradigm, but also to go beyond and capture the wider community and societal contexts within which the HIV/AIDS epidemic is reproduced.

In this I expound on my main argument and generate suggestions for enhancing relevance and appropriateness of HIV/AIDS policy interventions by drawing lessons from lived experiences at a fishing village in Uganda. In order to anchor my argument and proposed way forward on evidence, first, I present a synopsis of the lived experiences of the fishing village, pulling out some of the key emerging issues from this experience. Later, I make an attempt to critically relate and weigh these experiences to ongoing policy interventions in HIV/AIDS prevention in order to sieve out salient issues and gaps in policy interventions when assessed vis-à-vis life at the fishing village. It is from this synthesis that my line of argument is further developed and my thinking about ways for bridging gaps between lived experiences and policy interventions for HIV/AIDS prevention is derived.

The important thread running through this analysis, and indeed the thesis of my work is that rethinking the present interventions for HIV/AIDS prevention requires, first accepting the limitations of current behavioral models guiding current policy responses to the epidemic, and consequently, reformulating the approach to HIV/AIDS prevention through the recognition of economic and cultural meanings, social identities and community lived experiences. The later calls for a shift towards community-based empowerment efforts aimed at transformation of values, norms and the constitution of collective meanings of sexuality, risk and HIV/AIDS itself. Using empowerment practice as used in Social Work and in other helping professions, and in Social Sciences generally, I endeavor to demonstrate how, and why effective policy should be that that begins with the community, as agency, and then moves to the political arena.

In choosing to use empowerment, I am alive to the common fear that many use the term empowerment without understanding what it really means. Even my attempt to review the literature resulted in no one single precise definition of the concept, especially one that could cross disciplinary lines. It is for this reason that I have offered to get back into the semantics and conceptualizations to finally develop an epistemological standpoint which I prefer to use in articulating empowerment throughout the rest of the chapter. My preference in this chapter is to simply consider empowerment as a multi-dimensional social process that helps people gain control over their own lives. It is a process that fosters power in people for use in their own lives, their communities and in their society, by acting as agents, on issues they define as important. Given the vulnerabilities explored from the fishing village, I consider empowerment as the most logical and plausible way to bring change, both to individuals and to their social environs to deal with HIV/AIDS. Let me start on each of the sub-themes of this concluding chapter, cumulatively as one theme builds into the next, and then make my conclusion.

8.2 Lived experiences of lakeshore communities: A synopsis

In a largely multi-ethnic, multi-cultural, and socio-economically diverse cluster of three lakeshore villages, this fishing community is characterized by daily flows of people into and out, to trade in fresh fish and, at some sites, as a transit point to the islands; seasonal flows by fish traders, boatmen, and scores of women following shoals; and semi-permanent migration into other fishing communities, their narratives imbued with metaphors such as “life is hard”, “there is no more to fish in the lake” and “it does not matter whether I have slim (AIDS) anyway”.  The unplanned, spontaneous influx of people, and a plethora of needs such influx brings, involves people – scores or youth, sex workers, fortune seekers, speculators and delinquents in their struggle for more anonymity and opportunity – attracted from the hinterland where their livelihoods may have failed, and those who are speculatively drawn by the prospects of relatively easy money in the fishing sector. Engendered by neo-liberal economic policies in the fish economy, poor fishing habits (envuba embi), and inaccessible public health services, the hitherto somber, humdrum small population of indigenous fishers and farmers in this village a decade ago has turned into a drunken, vicious, unpredictable collection of hundreds of individuals scrambling for economic survival.

For the people of at this lakeshore, over the last decade, good health, or, for that matter, their sense of wellness is a thing of the past. Most of them are nostalgic about the fish boomera when, according to them, “everything used to be affordable” and life was good. Now they can only reminisce in order to re-construct and reaffirm their shared experiences and cultural memories -to make sense of and negotiate the present- a present that has seen the implementation of neo-liberal policies which have resulted in the proliferation of the large scale processing, packing and export of fish fillets to which everyday people seemingly have no control. In fact, one can hardly buy good fish at the fishing village, only perhaps the “rejects” left behind by the factorymen and their ice boxboard trucks. Naturally, there are exceptions to discourses about the “good old days” and the “life is hard” now; these are produced mostly by fisheries officials and community leaders. Even those with counterdiscouses agree that something has changed; the murky and elusive relations between fishers or “bosses” and boatmen, fishers and their new “bosses” the transporters, processors, exporters amid an export market environment filled with lacuna and exploitative tendencies.

As a result, the first category of “bosses”-fishers- have had to cut down on the number of people (boatmen, ice boys, loaders, et cetera) they employ, releasing fewer boats into the lake on a typical night and, therefore, fewer boatmen to try their luck. And with only limited options for people not directly involved in fishing, “life is hard” and is increasingly getting harder at this lakeshore. Even those who venture find that “there is no more to fish in the lake”.

Added to the narratives, often infused with both nostalgic remembrance of the past and a melancholic view of the ongoing societal and economic changes, the existing social support networks are evidently weak. In the absence of organized social safety nets, for many, life is hard.

These experiences add to the concerns about debilitating health and a plethora of lake-related “neglected diseases” to create an uncertain situation where HIV/AIDS is perceived simply as “another disease”, and consequently “it does not matter whether I have slim (AIDS) anyway”.

Within this sense of ambivalence and uncertainty, sexual relationships flourish both among those that can be termed “vulnerable” or sexually exploited, those in various forms of consensual conjugal links or “marriages”, but also those who wear the stature of “experienced professionals” in sex trade, exercising agency, partly a consequence of available opportunities at the lakeshore, not with the hundreds of fishers, dealers, business people, and transient groups littered everywhere. Not surprising, some people within and outside the landing site, including local leaders and public sector workers summarily describe this fishing village as a drunken, vicious, unpredictable collection of “abavubi” (literal term for boatmen) and “bamalaya” (derogatory term for sex workers), taking insurmountable risk in the course of scrambling for economic survival. The discourse about HIV/AIDS in this fishing village is nearly narrowed to these two categories; it is deeply entrenched and widespread. Being called “omuvubi” (singular for abavubi) is not necessarily about being a boatman, rather a metaphor used to connote risk takers, wasteful men, never plan or save, assured of more freebies of nature due to the lake; not mindful of one’s health or wellbeing; shabby but with lots of cash to spend on “bamalaya”, living on fate or luck; may die any time. While there are inhabitants in this community who exhibit some of the behaviors described above, all the men at this lakeshore are erroneously caricatured under this portrayal. On the side of the boatmen (the actual abavubi in the literal sense), this misleading blanket label has had the effect of producing a category that evidently feels stigmatized, is ambivalent on matters related to poor health, and to HIV, and has distaste for health providers and for local authorities and prefers to reside a distance away from everyone else.

Similar to the misleading, derogatory term abavubi in reference to the male inhabitants of the lakeshore, the term “malaya” is a popular pseudonym commonly used to refer to women – a metaphor that describes women who sell their bodies, women in business, the passionless, or the less formal “survival” and “transactional” sex workers, powerless, morally deprived sinners, or helpless victims who represent “reservoirs of HIV infection”. While lakeshore women are depicted thus, majority of the women at this fishing site are everyday women, single, married or with regular partners, and are going about their businesses, doing overt petty trade in fish and general merchandize mostly along the shore, or farm work. The label “malaya” is annoying even to those actually engaged in the sex trade because it clearly carries abuse and stigma since sex work is shrouded in moral ambiguity, constructed in terms of social pathology, and yet somehow tolerated and viewed, albeit sadly, as a potential means of livelihood. But the actual “bamalaya” (plural, connoting sex workers) exist in this village. Some fishermen narrated how, over time, there has emerged “bamalaya” who exert their influence and protect themselves or their clients from possible infection by insisting on using condoms, are out strictly to make money from the boatmen and other clients and after some time, migrate to other potentially lucrative sites. These are not necessarily powerless women to be rescued or protected from their “oppressive” conditions, neither are they complete agents since they can offer unprotected sex once offered “good money”.

To further complicate the dynamics of the sex economy at the lakeshore are ‘‘arrangements” between female fish traders and fishermen and other workers at the landing site in which the women engage in sexual relationships with the male fishers or some of the other categories to secure their supply of fish, a form of sexual networking rather deeply enmeshed in the social fabric, sacrosanct, and divorced from everyday discourses at the fishing village. These “husbands” and “wives” are bound together by the economics of fish, within a wider patriarchal, gender power imbalance. The later exchange for a wife’s duties including housekeeping, child bearing, cooking, and other domestic chores, and not simply sexual intercourse, and may therefore not fully negotiate safe sex. Others are “marriages of convenience” in which some amount of agency can still be exercised by the women, while other women in these transactional relationships, including scores of bar girls, restaurant attendants and idlers are simply between a rock and a hard place. This is the reason I want to reject the bipolarization of the people at this fishing village as either “victims” or “agents”, given that many of them are vulnerable to HIV infection anyway, an epidemic already categorized in the country as “generalized”.

My rejection of this bi-polarization is perhaps reinforced by common metaphor atthe fishing village “it does not matter whether I have slim (AIDS) anyway”; a largely common belief that people here have nothing to prevent since they are all infected with HIV/AIDS. Nearly everyone talks about this sense as though some empirical research exists. This sense of ambivalence manifests quite overtly when people make narratives that suggest that good health or otherwise wellbeing is simply a thing of the past. Many are also quick to inquire about the drugs (ARVs) they hear about in the media, wondering if such drugs would be availed in the clinics and drug shops next door. Some are not even aware that the ARVs are available at their public facility, the HC IV only 3-4 km away. For many, talking about treatment for HIV/AIDS and a host of other lakeshore-related “neglected diseases” and malaria which is killing many of their children is perhaps more appealing.

8.3 Emerging issues from lived experiences at the fishing village

This study shows how, in the context of poverty, risk and uncertainty, the inhabitants of the three fishing villages and surrounding areas articulate the effect of the present conditions of poor health and economic hardships on their everyday lives. The study pays particular theoretical attention to people’s narratives, often infused with both nostalgic remembrance of the past and a melancholic view of the ongoing societal, health and economic changes.

The study illustrates community concerns about debilitating health and a plethora of lake-related “neglected diseases”, the effects of the diminished integrity of local safety nets among off-shore communities, and, generally, a poor sense of wellbeing. The discourses at the lakeshore are largely narratives imbued with metaphors such as “life is hard”, “there is no more to fish in the lake”, “it was not like this before” and so on. Also evident are the counterdiscourses of a few, especially political and administrative leaders and progressive businessmen who argue that people have themselves to blame for their plight. In between, there are those who simply say “life goes on”. These alternative voices are however overshadowed by the widespread expressions of social and economic inequalities among scores of people, young and old, and feelings of deprivation that have become formulaic pronouncements to indicate a loss of community values and respect, physical and psychosocial illness, and bound up with the economic hardships. The latter are engendered by neo-liberal economic policies in the fish economy, poor fishing habits (envuba embi), and inaccessible health services. Consequently, where policy interventions for HIV/AIDS prevention are silent, or are not aligned to these lived experiences, such interventions run the inescapable risk of being misunderstood, misinterpreted or being simply ignored.

The fact that discourses of nostalgia at this lakeshore are mostly produced by early occupants of the landing site, and by young people who are poor and socially excluded, and that counterdiscourses are produced mostly by fisheries officials and community leaders, underscores the importance of giving credence to the variance in discourse produced by the particular historical and political context in which studies of discourses of nostalgia are conducted (see Hill 1998). As Bissell (2005) notes, reminiscence is shaped by specific cultural concerns and struggles; and as with other forms of memory practice, it can only be understood in particular historical and spatial contexts.

The plethora of vulnerabilities lakeshore people grapple with, and the scattered, impromptu ways with which their long-standing socio-economic and health challenges, including HIV/AIDS itself, have been handled makes HIV/AIDS “just another disease”.   It also erodes community confidence in public pronouncements and services meant to halt the spread of the epidemic. A transformed approach, one that confronts or takes cognizance of lived experiences of people and tackles the broader forces structuring their vulnerability is therefore necessary.

Further, the stories and experiences of the women and men at the lakeshore also attest to the personal and social complexity of their lives. It is difficult to imagine that the social-psychological theories current in prevention intervention are adequate to address such complexity. It is perhaps necessary, but certainly insufficient to provide only health education (Health Belief Model), or to address only the” cognitive structure underlying the behavior in question” (Theory of Reasoned Action), or to consider only the “cognitive interpretations of the consequences of performing the behavior (and) a person’s belief in their capabilities and confidence in performing the behavior” (Social Cognitive Learning Theory) (Windsor et al., 1994). Each of these popular theories ignores the psychological aspect of feeling, and its role in positioning people to become “at risk for HIV infection”.

The experiences at the lakeshore also give us some insight into the complex and deeply felt emotions which trigger a series of “behaviors” we have come to understand as “risky.” Towards this end, it has been suggested that one needs to understand the historically given conditions that put people at risk for AIDS and the other afflictions that beleaguer them. As an alternative to the dominant model, this perspective balances out those external forces which, in the name of individual autonomy, place an impossible and unfair burden on the individual.

From this vantage point, HIV risk and barriers to risk reduction for women like those who reside at the lakeshore, and some of the boys and men, have as much to do with economic necessity, the lack of affordable and adequate shelter, limited access to preventive health and psychosocial health care as they do with individual deficiencies and limitations. The circumstances in which people, both men and women, are living their everyday lives inevitably produce narratives through which they tell themselves who they are, and how they can live and act in the context of HIV and the risks associated with it. Whether victims or agents in whatever they are doing, many are vulnerable to HIV infection or re-infection.

In addition, analysis of partner relations in this fishing village show that marriage is a relative concept; various kinds of union between men and women are referred to as ‘‘marriage”. There is also an unbroken continuum running from concurrent official marriage through cohabiting to regular relationships and from them to transactional and casual sex relationships. These are all ideal types and, in practice, it is difficult to distinguish clear-cut categories about which everyone agrees. Thus the messages about abstinence, fidelity and condom use when strictly applied do not seem to fit in exactly within some of the social identities, and may consequently be lost along the way. These are quite complicated social identities that will clearly defy straight-jacket interventions for HIV/AIDS prevention.

I therefore want to agree with Stoebenau (2009) who is concerned with the global diffusion of identities and the assumptions regarding the homogeneity of such identities from one region or country to the next. Stoebenau argues that inappropriate reliance on these identities oversimplifies the social organization of the sexual economy in some communities and could result in negative consequences for the health of women (and men, my addition) engaged in the sexual economy, as well as for HIV/AIDS prevention efforts more generally.

As a compounding aspect, the sex economy extends beyond this fishing village, and beyond the boatmen, “abavubi” (in a literal sense), a group commonly thought about when discourses about HIV/AIDS in fishing communities emerge. Rather, there are many other groups or categories of islanders, traders, migrants and speculators and so on who camouflage as boatmen, engage is transactional sex activities and are all given the label “abavubi”. The sense of ambivalence that characterizes this sex economy, and which gets more pronounced the deeper one moves into the islands has far reaching implications on the health and wellbeing of residents at this fishing village. This is due to the regular interaction of the people to and from these islands who use this landing bay as a transit point as they venture into the belly of the Nalubale lake or get back to the inland.

My work also brings into light other important issues about HIV/ AIDS in fishing communities. It highlights in particular the need to ensure that the gender bias present in fisheries sciences where women are perceived mainly as passive actors or ‘‘part of fisher sexual network” of fishermen is not reproduced in HIV/AIDS. The starting point of relevant interventions should be the recognition of the deep multiple gender and other social identities that characterizes the fishing sector, with strong, generally unequal, relationships between men and women, institutionalized in both social and economic spheres.

8.4 Synthesis of gaps in policy interventions for HIV/AIDS prevention in relation to lakeshore communities

Foremost, the structures at the decentralized local government level, namely the Sub-County AIDS Committee (SAC) and Sub-County AIDS Taskforce (SAT), which are expected to take lead in planning, coordination, mainstreaming HIV/AIDS in development activities, advocacy and resource and community mobilization, are glaringly constrained to undertake their roles. The structures at parish and village level for HIV/AIDS coordination (Parish and Village AIDS Committee – PAC and VAC and AIDS Taskforces – PAT and VAT) simply do not exist in the fishing community. The Beach Management Unit (BMU) would perhaps have undertaken this role but is visibly pre-occupied with taking records of fish output, assessing fines, settling disputes, and ensuring that illegal fishing activities on the lake are minimized. Beyond storing some prophylactic drugs against bilharzia, the BMU demonstrates limited interest in other communicable, preventable water-born and sanitation-related diseases. The few CBOs, religious, cultural institutions could have formed part of the partnership framework at these local levels but these structures too are less active and inadequately guided to work in synergy on HIIV/AIDS.

Turning to individual policy interventions, some of the key IEC/BCC messages of ‘love carefully’ or ‘love faithfully’, “break the sexual network” or “use condoms” emphasizing reduction of sexual networks and reducing the number of non regular sexual partners aired largely through mass media channels have been received but they do not resonate well with all social identities at the fishing village. First, the messages are largely generic across communities and categories, are constructed in a behavioral paradigm, some seemingly in conflict over relative efficacy of AB versus C and so on. Lastly, the church and FBOs are against the use of condoms and insist on abstaining among young people and being faithful to each other among married partners. The government and the rest of the other actors in the fight against HIV/AIDS have continued to promote a broader approach include risk reduction measures. Further, their good work in HIV care notwithstanding, a number of religious agencies and individual leaders mainly of the Pentecostal denomination continue to preach that HIV is essentially a curse from God, implicitly stigmatizing infection, but that prayer cures AIDS, thus again misleading wide sections of the population. A combination of the authoritative hegemonic voice from MoH and her partner agencies added to the moralistic voice of the FBOs has partly served to create stereotypic images of everyday people and to shape the dominant discourse on HIV/AIDS as a medico-moral problem, thus marginalizing, perhaps intentionally, alternative discourses that would broaden the analysis to the wider socio-economic and political realm. The result is a king of IEC/BCC appealing to individual cognitions for behaviour change, a not too subtle form of victim blaming in the event that one contracts HIV, and, implicitly, a sustained moralization of a generalized epidemic.

Further, in relation to condom use and other risk reduction interventions, there are issues of marginality, poverty, and powerlessness which continue to compel considerable numbers at the fishing village to redefine and reconstitute the meaning of risk in ways that increase their vulnerability to sexual and reproductive health dangers. The results include sex-for-fish arrangements, overt commercial sex work, other transactional sex and ‘‘ordinary” sexual relationships intertwined in complex constellations of economic dependence, the pressure of social norms and other considerations. In a context of scarcity not just of fish but other opportunities for social and economic wellness, a state of debilitating poverty and uncertainty for some fisherfolk, limited social networks for others, and a plethora of lake-related “neglected diseases”, a sense of ambivalence looms especially about a disease such as AIDS that is known to occasion demise of its victims “after a long time, in fact many years, especially if you don’t get drugs”. This context lowers the motivation for sustained condom use.

With regard to facility based interventions such as HCT, PMTCT, CTX and post exposure prophylaxis, quite many people unfamiliar with the range and nature of HIV-related services at their public health facility. Others simply hold low opinion about the availability and quality of services at their public health unit, while some of the women are concerned about possible partner violence in the event that she is diagnosed to be infected with HIV. At the fishing village, HIV/AIDS is still a highly stigmatized illness. Added to a glaring absence of client monitoring and a community based health service in general, limited human resource capacity and meagre funds available to meet the wide scope of services, not just for HIV/AIDS but also other pressing needs combine to further limit access of people at the fishing village to key interventions for HIV prevention. Specific to PMTCT, there are additional challenges especially when for mothers seeking PMTCT services are required to come along with their male spouses. While this practice carries common sense, it places an enormous task on the expectant mother to bring a reluctant, sometimes transient fisher/boatman, ice boy, loader, trader, shop keeper, speculator, idler at the fishing village, and/or sand labourer on the excavator, etc to the health centre. Many fail this requirement but for a few others, the “husbands” presented may not necessarily be the actual spouses or sexual partners. In the extreme, this is a reminder to the mother of a traumatic violent experience she would otherwise not want to relive.

In terms of other HIV/AIDS related SRH interventions, available are maternal and child health services especially, antenatal care, normal delivery services and c-section, post-partum care, STI treatment and family planning. However, the facilities in propinquity to the fishing village still lack information and drugs for managing cases of occupational or sexual violence post-exposure prophylaxis. Other SRH services like cervical screening and PAP smears are unavailable at all the facilities nearest to the people in the fishing village. Except for pregnancy tests, other interventions such as unplanned pregnancy advice and abortion counseling are also glaringly missing. This should have been part of the sex information and education especially to young people, good entry point for discussing HIV/AIDS issues with young people to build their self efficacy and motivation to make choices and maximize productive health.

Given the aforementioned, it is evident that in a context where heterosexual HIV infections are predominant, strategies focused on the provision of condoms and on safe-sex education programs and scattered essentialist services are inadequate to stem the spread of the epidemic. The distribution of sex technologies that has occurred side by side with education programs largely shows how condoms should be used, and explains what HIV/AIDS is and how it can be contracted. Focus is also on promotion of abstinence, monogamy and/or condoms as ways to successfully avoid infection. Most prominent, education, be it for ABC, HCT, PMTCT, and so on is conceived of as providing relevant knowledge considered to be an essential and even a sufficient method of preventing the spread of HIV. The stabilization of HIV prevalence, unfaltering increase in HIV transmission rates among sub-groups, and fear of rising incidence however, is an alarm that this approach is inadequate.  Even if the existing interventions are synergized into what is currently termed “combination prevention”, whereby all the key components of prevention are packaged and served to all targeted communities, less is likely to be realized without a systematic process of social, economic and infrastructural transformation of communities such as the fishing village in this study. The reason is twofold; first, these are top-down interventions assumed to change the behaviour of the individuals’ sexual and reproductive lives by increasing service access; second, little is constituted within the prevention package to challenge, and act upon the social conditions that reproduce HIV/AIDS.

8.5 Bringing gaps between lived experiences and policy interventions for HIV/AIDS prevention

8.5.1 Preamble to my argument

Epstein, Morrell, and Unterhalter (2004) argue that there have been two basic approaches to the problem of how to intervene in the current HIV/AIDS crisis. The first is based on the hope that the answer can be found in personal transformation and that interventions can empower people (often, but not only, women) to take control of their lives, their sexualities, even their identities, in order to slow or stop the spread of HIV. The second approach sees the answer as lying in social transformation, in which gendered, ethnic and class relations are restructured. The first approach can, indeed, lead to immediate benefits with individuals feeling (and being) able to approach their lives and their sexual partners differently, at least for a while. The problem is that such benefits are often short-lived and cannot survive the intrusion of material differences in power, access to money, and so on. The longer term answers need to include socio-economic transformation but this is difficult to achieve. Epstein et al (2004) argue that both approaches are needed. Indeed, they suggest that there is a dialogic relation between the two: individual transformation is shaped by socio-economic processes and relations of power and socio-economic transformation can and do take place through the actions of individuals.

My suggestions for bridging the gap between lived experiences and policy interventions for HIV/AIDS prevention are built from this concrete epistemological position, but extend deeper into the notions of power and empowerment for that matter as precursors for an effective intervention to stem the further spread of HIV/AIDS.

8.5.2 Epistemological standpoint in articulating em

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