Enhancing relevance and appropriateness of HIV/AIDS policy interventions: Lessons from lived experiences at a fishing village in Uganda
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-A -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”.A 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”.A A 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.A
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.A 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 empowerment as applied in my argument
A literature review of articles indicating a focus on empowerment (Rappoport 1984; McKnight 1985; Minkler 1992; Schulz et al 1995; Kelly 1995; Eng and Parker 1994; Mayer 1996; Robertson and Minkler 1994; Hatch et al 1993; Valdiserri and West 1994; and others), across several scholarly and practical disciplines, reveals no clear definition of the concept across disciplinary lines. Many using the term cope with its lack of clear, shared meaning by employing the concept very narrowly, using only their specific scholarly discipline or program to inform their work. And as Czuba (1999) puts it, others do not define the term at all. As a result, many have come to view "empowerment" as nothing more than the most recently popular buzz word to be thrown around.
In a journal commentary, Cheryl E. Czuba (1999) suggests that to begin to demystify the concept of empowerment, we need to understand the concept broadly in order to be clear about how and why we narrow our focus of empowerment for specific programs and projects, and to allow discussion of empowerment across disciplinary and practice lines. Czuba (1999) argues that at the core of the concept of empowerment is the idea of power. Thus the possibility of empowerment depends on two things – first, empowerment requires that power can change. If power cannot change, if it is inherent in positions or people, then empowerment is not possible, nor is empowerment conceivable in any meaningful way. In other words, if power can change, then empowerment is possible. Second, the concept of empowerment depends upon the idea that power can expand (ibid).
Traditionally, power is often related to people’s ability to make others do what they want, regardless of their own wishes or interests (Weber 1946). Early social science emphasizes power as influence and control, often treating power as a commodity or structure divorced from human action (Lips 1991). Conceived in this way, power can be viewed as unchanging or unchangeable. Weber (1946) gives a key word beyond this limitation by recognizing that power exists within the context of a relationship between people or things; power does not exist in isolation nor is it inherent in individuals. By implication, since power is created in relationships, power and power relationships can change. Empowerment as a process of change, then, becomes a meaningful concept.
The concept of empowerment also depends upon power that can expand. Understanding power as zero-sum, as something that one gets at another person’s expense, cuts most off from power. This conception of power means that power will remain in the hands of the powerful unless they give it up. Although this is certainly one way that power is experienced, it neglects the way power is experienced in most interactions. Grounded in an understanding that power will be seen and understood differently by people who inhabit various positions in power structures (Lukes, 1994), contemporary research on power has opened new perspectives that reflect aspects of power that are not zero-sum, but are shared. Researchers and practitioners call this aspect of power "relational power"(Lappe and DuBois, 1994), generative power (Korten, 1987), "integrative power," and "power with" (Kreisberg, 1992). This aspect means that gaining power actually strengthens the power of others rather than diminishing it such as occurs with domination/power. Kreisberg has suggested that power defined as "the capacity to implement" is broad enough to allow power to mean domination, authority, influence, and shared power or "power with." It is this definition of power, as a process that occurs in relationships, that I consider to give the possibility of empowerment.
Empowerment is a construct shared by many disciplines and arenas: community development, psychology, education, economics, and studies of social movements and organizations, among others. How empowerment is understood varies among these perspectives. In recent empowerment literature, the meaning of the term empowerment is often assumed rather than explained or defined. Rappoport (1984) has noted that it is easy to define empowerment by its absence but difficult to define in action as it takes on different forms in different people and contexts. Even defining the concept is subject to debate. Zimmerman (1984) has stated that asserting a single definition of empowerment may make attempts to achieve it formulaic or prescription-like, contradicting the very concept of empowerment.
Given the above, I want to borrow Czuba’s (1999) notion that empowerment is a multi-dimensional social process that helps people gain control over their own lives. It is a process that fosters power (that is, the capacity to implement) in people, for use in their own lives, their communities, and in their society, by acting on issues that they define as important. Czuba suggests that three components of the definition are basic to any understanding of empowerment. Empowerment is multi-dimensional, social, and a process. It is multi-dimensional in that it occurs within sociological, psychological, economic, and other dimensions. Empowerment also occurs at various levels, such as individual, group, and community. Empowerment, by definition, is a social process, since it occurs in relationship to others. Empowerment is a process that is similar to a path or journey, one that develops as we work through it. Other aspects of empowerment may vary according to the specific context and people involved, but these remain constant. In addition, one important implication of this definition of empowerment is that the individual and community are fundamentally connected. Going back to the basis of my argument, it means that focus only on individuals in the expectation of sustainable change may not be wise.
Rather, individual change is closely intertwined with community change. Both enjoy e symbiotic relationship. On one hand, individual change is a prerequisite for community and social change and empowerment (Speer and Hughey 1995; Florin and Wandersman 1990; Chavis and Wandersman 1990). Individual change thus becomes a bridge to community connectedness and social change (see also Wilson 1996). To create change we must change individually to enable us to become partners in solving the complex issues facing us. In collaborations based on mutual respect, diverse perspectives, and a developing vision, people work toward creative and realistic solutions. This synthesis of individual and collective change is my understanding of an empowerment process. I envision this inclusive individual and collective understanding of empowerment as crucial in policy interventions with empowerment as a goal. It is in the critical transition, or interconnection, between the individual and the communal, or social, that programs and services for addressing HIV/AIDS can be more meaningfully conceived. This is the epistemological standpoint I will use in thinking about the practical steps in enhancing empowerment for HIV prevention at a fishing village to which I now turn my attention.
8.5.3 Practical steps in enhancing empowerment for HIV prevention at a fishing village
In order to anchor my suggestions towards enhancing empowerment for HIV prevention within the realm of Social Work more meaningfully, I will develop my ideas by borrowing heavily from the works of respected authorities within the discipline who have examined empowerment. In an eclectic fashion, my suggestions will blend with those expounded in the early works of Solomon (1976) and Berber (1986) which were later developed and encapsulated by Rees (1991), Croft and Berest (1994), Kondrat (1995) and Payne (1997). A This does not in any way diminish the important contribution of authorities from other related disciplines and fields of practice such as community psychology, social epidemiology, and health promotion (e.g. Wandersman, Chavis, Florin, Zimmerman, Woelk, Gomez, Valdiserri, McKnight, Minkler, Schulz et al) who have produced exceptional pieces on community empowerment as a new paradigm for addressing health problems and other community concerns well.
From a Social Work perspective, effective empowerment is one that seeks to help clients gain power of decision and action over their lives by reducing the effects of social or personal blocks to exercising existing power, by increasing capacity of and self confidence to use power, and by transferring power from the environment to clients (Payne 1997). First I use the comprehensive account of empowerment as coined form Rees (1991) which particularly focuses on the political role of empowerment in Social Work, and bring this to the realities of people at the fishing village. Rees (1991) identifies five essential ideas within empowerment namelyBiography,Power, Political understanding, Skills,and finally, Interdependence of policy and practice. This in my view is a useful starting point for actualizing empowerment for instance among lakeshore people in relation to HIV/AIDS prevention. I will immediately elucidate on each of these ideas as I relate them to the fishing village.
Biography is an easily understood way of analyzing, experiencing and understanding about the world. Using biography allows us to draw in a wide range of ideas and theories that we might have come across. It places present struggle in context, allows us to understand continuity and coherence in people’s experience and helps to identify what prevents people from acting. Exploring a biography raises the potential of changing the way someone participates in future events. This has been my starting point, to live the lived experiences of lakeshore people in order to analyse and understand the context and complexities in their lives, building on discourse analysis, to delineate the challenges and opportunities in their struggle for good health which include HIV/AIDS prevention. The findings of this study are a form of biography. Now we know that there are inadequate linkage between the lived experiences of lakeshore people and ongoing policy interventions meant to address HIV/AIDS prevention amongst them. We know that inadequate support to prevention interventions at nearly all levels – district and community- aside, the fishers have apparently either misinterpreted, misunderstood or simply ignored a lot of the prescriptions for HIV/AIDS prevention that are pushed to them. The plethora of vulnerabilities they grapple with, both in the lake and offshore, 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 appear simply as “just another disease”.A A It also erodes their confidence in public pronouncements and services meant to halt the spread of the epidemic. This is a good starting point.
According toRees (1991), Power needs to be understood as potentially liberating as well as oppressive. A major difference between empowerment and radical and anti-discriminatory perspectives is the view of power as something that might be used positively instead of seeing it always as oppressive. Rees (1991) focuses on politics as a process of getting resources and settling conflicts using influence through power struggles. He emphasizes how the use of language expresses power relations. This in my view is the next step following biography. Lakeshore people have latent power but can also be supported to generate more external power to act meaningfully on their undeniably vulnerable lives. If we reject zero-sum notions of power, but instead envision shared power at the policy level, a kind of "relational power"(Lappe and DuBois, 1994), generative power (Korten, 1987), "integrative power," and "power with" (Kreisberg, 1992), then we can begin to bring individuals and community groups at the fishing village to be part of the initial thinking about how to deal with HIV/AIDS, rather than educate them on “good sex” orA “bad sex”. This implies bring local people to participate in the definitional process, to shape the language we use in understanding HIV/AIDS. Doubtless, once meaningfully involved in shaping the discourse of HIV/AIDS, both the behavioral and contextual dynamics in the wider socio-economic milieu will be explored, and acted upon.
Political understanding needs to inform practice, in observing both constraints and opportunities, according to Rees (op.cit). Social Work acts always involve either accepting or seeking to change an existing way of organizing power relations. Apparently, actors in HIV/AIDS work appear to be doing rather poorly in terms of observing and delineating opportunities within communities themselves which could re-organize the power relations and serve as entry points for addressing debilitating conditions that bring poor health. In the case of the fishing village, and to use the terms as coined by Alsop et al (2006) we can explore the opportuunities by assessing a person’s or group’s agency as predicted by their asset endowment. A lot of these assets reside in the individuals and in the community itself – physiological, informational, organizational, material, social, financial, and human assets, including assets such as social capital. Where such assets are deficient, the starting point is to develop them further. The assumption about fishing villages as a community with highly transient character and thus likely to be short of such asset endowments is not sustainable since, as I indicated earlier, not everyone in the fishing village is transient. On the contrary the majority are settled members going about their everyday lives. Even the relatively transient tend to retreat to the fishing village they call home.A
Skills can empower. Using and gaining skills can be an important way of experiencing liberation. Whereas the notion of skills is not contested even by those who advance the hegemonic discourse abut HIV/AIDS – infact skills building is part of self-efficacy to guard against risk as espoused in the Health Belief Model-, little is evident at the fishing village in terms of enhancing the capacities of individuals, groups and whole communities to pick appropriate skills. The perspective of actors in HIV/AIDS limits the notion of skills to “negotiation skills” for sexual partners to take preventive action such as abstinence or condom use. But this is a narrow conceptualization of skills that people at the fishing village would require to properly deal with HIV/AIDS. From a Social work perspective, skills acquisition is a broad area which requires further articulation with the participation of the clients themselves. The point in my argument is that we need to broaden the notion of skills that can empower men and women within the multiplicity of identities already described in the previous chapters. It is not simply about skills on “how to wear a condom correctly”, “negotiate safe sex”, “bring your partner along to test for HIV” as is presently the emphasis. It is also about skills to enhance complete social functioning of individuals and groups to attain satisfying social and economic relationships and standards of life in accordance with their particular capacities and wishes, and in harmony with the rest of the community. This is the meaning of Social Work, and indeed its potential contribution to dealing with HIV/AIDS
Finally, Rees (op.cit) underscores the notion that interdependence of policy and practice must be established. This is contrary to the convention, which regards the development of policy as outside the role of practitioners and their work with clients. I argued from the beginning that part of the failure to deal with the problem of HIV/AIDS in Uganda emanates from the tendency to privilege only the knowledge and perspectives of “health experts”, mainly from biomedicine, public health and behavioral sciences, placing them at the epicenter of policy setting and application. The call for multi-sectoral intervention as in the case of HIV/AIDS is made for other sectors or professions to pass on the nearly predetermined policy prescriptions, to appeal to people to avoid risk. Social Work and perhaps other professions become more visible as individuals and families commonly defined as “victims” of the social problem emerge who require counseling and other psychotherapeutic interventions. This is not meaningful interdependence.A There is so much within theory and practice of Social Work that can for instance help to bring community contexts into the definition of the HIV/AIDS problem and contribute meaningfully to policy interventions. Even in the case of interventions for persons living with HIV/AIDS, orphans, other vulnerable children, young people in difficult circumstances and other affected categories usually are reserved for Social Work and related professions to handle, the relationship between Social Work and policy should begin at the conceptual level where the former has the opportunity to bring to the fore the developmental paradigm in Social Work practice.
My argument resonates quite well with the ideas of Kondrat (1995), Croft and Berest (1994) and others before them (e.g Solomon 1976; and Berber 1986).A For instance, Kondrat argues that empowerment requires us to consider whose knowledge is valuable. We should focus on local knowledge particularly that is gained from clients, and also practice should reject insight and self awareness as professional and treatment objectives and instead focus on critical discernment through dialogue processes of power differences and changes. Croft and Berest (1994) argues that a particular approach is valuable because people want and have a right to be involved in decisions and actions taken in relation to them. Their involvement represents the democratic value base of Social Work; it increases accountability makes for more efficient services and helps achieve the Social Work goals. Their view of participatory practice has four elements;
1. Empowerment which involves challenging oppression and making it possible for people to take charge of matters which affect them.
2. Control in defining their own needs and having a say in decision making planning
3. Equipping people with personal resources to take power by developing their confidence, self esteem, assertiveness, expectation and knowledge
4. Organizing the agency to be open for participation
The philosophy of self direction, personal responsibility and self actualization through empowerment has relationships with cognitive changes on the side of individuals but also with wider changes in whole groups and communities. Croft and Berest (1994) emphasize the process of recognizing and building strength or competences. They base their approach explicitly on work of Freire, in that they seek to empower people to become subjects rather than objects in their lives by involving them in process of advocacy. This is the kind of empowerment I would envision for the lakeshore people; for them to gain control over their pressing conditions not just related to HIV/AIDS, but the entire array of debilitating health and livelihood challenges that impact on their ability to prevent HIV infection.
The lived experiences at the fishing village attest to people’s sense of ambivalence echoed in such metaphors as “it does not matter whether I have slim (AIDS) anyway”. The way to handle this sense of ambivalence is to pick clues from “learned helplessness” proposes a useful perspective for Social Work (see Berber 1986). If people at the fishing village have lived experiences which show that what they do does not affect what happens to them, they form the expectation that their actions will generally not produce any useful results. Their capacity to learn useful behavior in other situation becomes impaired. People may loose motivation, become anxious and depressed and poor at thinking and learning. This evidence clearly supports some of Solomon’s (1976) ideas about powerlessness. People who are powerless throughout their lives would carry a sizeable burden by learned helplessness. The response should be according to Barber (1986), environment enrichment by giving such people experience of situations in which they are in control and achieve successful results.A This potential contribution of Social Work is particularly absent at the lakeshore.A
As I get to the belly of my argument, I hasten to add that empowerment should not be mistaken for enablement. Empowerment is not limited, as enablement is, to allowing or assisting people to take actions but is aimed at relinquishing and transferring to them power permanently to control their lives. Clients often have power which they are unable to use or believe they do not have. The important point is to explore, together with them, their asset endowments, and to be able to manage these assets. Perhaps Solomon (1976), whose work predates HIV/AIDS, saw this much earlier; she asserted that powerlessness in individuals or groups is largely the inability to manage emotions, skills, knowledge or material resources in away that effective performance of valued social roles will lead to personal gratification. In the case of HIV/AIDS prevention at the fishing village, this is indeed more explicit than perhaps Solomon would have envisaged.
At the lakeshore, my evidence shows how people have been valued negatively as “abavubi” (feckless risk takers) and “bamalaya” (foolhardy prostitutes), both as morally deprived sinners, or helpless victims who represent “reservoirs of HIV infection”. The language which attaches derogatory words to such groups and the blanket labeling of everyone from the fishing village as such is entrenched so much for so long that their powerlessness is extensive and crippling. Empowerment should aim to use specific strategies to reduce, eliminate, combat and reverse negative valuations by powerful groups in society affecting certain individuals and social groups is presently the case. Thus, alongside the work that is required to raise the self esteem, self direction, personal responsibility and self actualization of disenchanted groups such as boatmen at the fishing village, Social Work need to confront pervasive negative valuations from the leadership at the lakeshore, health workers and significant others perpetuating such negative portrayals.
In a word, confronting HIV/AIDS at the fishing village requires a deliberate empowerment process to help various community individuals and groups of clients see themselves as agents in finding solutions to their problems within a power structure (however complex) that is open to influence by those negatively affected by the social conditions at the lakeshore.A This also requires a pool of Social Workers and others within the helping professions with the appropriate knowledge and skills that clients can use, but also skills that policy makers, planners and coordinators of social services will use. Within the context of a devastating HIV/AIDS epidemic, work with fishing communities should essentially begin by negative valuations and portrayals so they see people themselves as able to able to have some impact on their problems. In addition, together with Government and civil society agencies, work is required to find and remove blocks and find and reinforce supports to effective problem solving.
In order to create visible change, to turn fishing communities into agents of their own wellness, I want to emphasize the linkage between agency and structure as I conclude.A This is principally because Social Workers need to be able to assess whether or not an opportunity to make choice exists on the side of the various community groups at the fishing village, whether the individuals and/or groups actually use the opportunity to choose, and also whether the choices bring about the desired result in this case HIV/AIDS prevention. For the above to happen, Social work should be seen to act no simply on the individual level domains of change (knowledge, cognitive, perception, motivation, self efficacy, locus of control and so on) but also at the State, Market and Society levels where the individuals are civic, economic and social actors as well.
8.6 Conceptual and methodological shortcomings of the study
8.7 Insights for further research
8.8 Concluding remarks
Ethnographically informed narratives such as the ones I have presented, that are grounded in a discourse-oriented approach, help provide more nuanced representations and evaluations of people’s interpretation of lived experiences. These narratives at the fishing village say volumes about critical changes that have occurred at the individual and community level in a shifting neo-liberal socio-economic environment in a community hard hit by HIV/AIDS as well. Drawing upon excerpts from stories of particular individuals and groups and situating them in the larger context of the fish economy, I have demonstrated how, among lakeshore communities, people articulate their lived experiences. Notwithstanding the epistemological, theoretical and methodological limitations associated with validating such experiences of people as representative of ‘real world’ situations, I am confident that stories told by everyday people in the community, especially those whose voices are rarely heard in socially occurring discourse, provide crucial insights into their individual, social andA cultural understandings of the ways in which their everyday lives are affected by factors some of which are undoubtedly external and beyond their realm to manipulate individually. These factors are clearly relevant to their understanding, appreciation and response to long-standing, new and emerging socio-economic and health challenges including HIV/AIDS. To ignore or simply gloss over such issues is simply to miss an important entry point for prevention of debilitating challenges such as HIV/AIDS.
My work demonstrates the weaknesses and flaws of popular and scientific paradigm of AIDS, and the attendant models and interventions derived therefrom. I therefore call for an alternative framework which captures the individual in society. I reject much of the dominant medical and public health discourse on HIV/AIDS prevention which contains within itself a dichotomy between the biological individual and the social community, and then it ignores the latter. I have used this analysis to reflect the ideological commitment of this discourse to individualism, and decried the reluctance to accept social inequalities in health and consequent failure to challenge the social production of HIV/AIDS.
My take on HIV/AIDS at the fishing village is that, first we should be guided by a developmental paradigm that incorporates the real conditions of people’s lives and the social and material bases of disease transmission which will move us beyond prevention efforts directed mostly at the ‘consumers’ of health care, the carriers or potential carriers of HIV/AIDS. Focus should therefore be shifted to the analysis of vulnerability as understood as socially constructed and conditioned within those we call our target communities themselves. This rethinking raises the possibility of a transformed approach, one that confronts or takes cognizance of lived experiences of people and alters the broader forces structuring their vulnerability. By applying empowerment theory and tools as used in Social Work practice, community people should be able to respond more adequately to policy interventions for HIV/AIDS prevention. This study demonstrates that community dynamics should give Social Work its meaning, define its process and delineate its practice boundaries. Social Work in Uganda, it is concluded, should broaden its practice boundaries in HIV/AIDS work, and get to the epicenter of policy development and articulation as well.