AIDS in Africa and the Caribbean

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AIDS in Africa and the Caribbean

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AIDS in Africa and the Caribbean

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DS in A ica and the Caribbean EDlmD BY

George C. Bond o h Kreniske Ida Susser and oan Vincent

A Menzkr of the Perseus Books Croup

All righ&resewd. Prlntd in the United States of Amkca. No part of this publication may be reproduced or m s d t t e d in my f a m or by any m=%, electronic of mechanicd, ineluding photocopy, recording, or any infomticm starage and m ~ e v d system, without pedssion in ur~tingfrom the puMisher.

Qpyfi&t 8 1997 by Westview Press, A Mmber oaf the Pergus Book &oup Published in I997 in the United States of cil by Westvim Pras, 55BO aatraE Avenue, Boulder, Colorado 80301-2877, end in the United Gngdorn by Watview b s , 12 Hid's Copse Road, Cumnor Hill, Oxford 0 x 2 9JJ

A GIP cablog word for this book L avallhle from the L i b r q of Congress. lSBN 0-13 133-2878-0( h ~ ) 4 -133-2879-3 8 (pb)

The paper used in this publication m t s the quixements af the A m ~ c a nNation& S t m k d for

nce of Fawr far Printed L i b r q Matefials Z39.48-1984.

FBB

Q N DEMAND

Contents

1 The Anthropology of AIDS in Africa and the Cmibbean, Gsorge C. Band, John Kretziske, I;da Sgsser, and Joan Vi'neent 2 SoeiocuIturaX Aspects of AIDS in Africa: Occupational and Gender issues, Anne K Akeroyd

PART TWO Case Studies 3 AIDS in the Dominican Republic: AnlhropoX~gicaTtRefleedons on the Social Nature of Disease, John Kreniske 4 Community Organizing Around HIV Prevention in Rural Puerto Rico, Ida Susser and John Kreytuke S AIDS Prevention, Treatment, and Care in Cuba,

Sarrxh Santana

6 AIDS in Uganda: The First Decade, Ceorge C, Bond and J ~ a nVincent

7 Community Based Brganizatians in Uganda: A Youth Initiative, George C, Bond and Jwn Vincent

8 Female Genitai Health and the Risk of HIV

Transmission, R e g i ~ aMcNanzara 9 The Point of View: Perspectives on AIDS in Uganda, Mavyiaes Qons

PART T H m E h l i c y ksues 10 The HIV Epidemic as a Development Issue, Elizabeth R e 2 l 1 Placing Women at the Center of Analysis, Eliw beth Reid

12 AIDS from Africa: A Case of Racism Vs. Science? Rosalivtd J. Harrison-Ckirinzuutia and Riehard C, Chirimuctta 13 U.S. Aid to AIDS in Africa, Meredeth T~rshen

14 AIDS: Body, Mind, and History, Slzirle)i Lhdenba~lm

References About the Book About the Editors and Contributom Index

165

Foreword It is a pleasure to introduce this volume to students of the epidemic of our generation, WlV/AIDS. The authors bring us points of view, obswvatians, sad insights that are new and challenging, even to those whose bawledge of the diseae already extends we11 beyorrd the laborawry and the hospital, Some cfiiiigters ilfus@ateanthropologists at work in locales rarely visited by resewch scientists; others provide ideas and perspectives also rarely visited, Accordingly we believe readers will be stimulated, irked, and in the end, e ~ c h e by d this book, Zena Stein

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Preface Most of the essays in this volume, AI;DIT in Afrca and the Caribbean, were first nodeficiency Syndrome given at an international conference on Acquired I (AIDS) in Africa and the Caribbean, co-sponsored by the Institute of African Studies and the H N Center for Clinical and Behavioral St;udies at Columbia University. This was held in New York in November 1991. Professor n n s \ Stein, the Co-dkector of the HW Cenkr, was cmciaE in organizing the Conference. It was a highly p.roduetive gathering of international scholars who considered the theorelical and practical implications of AIDS f;or Africa and Caribbean development as well. as for the humanities and social sciences. It w a r e g e t ~ b l ethat mmy distinguished auaoritks on the subjeer were unable to attend, mong them Dr. Amana, Dr, Maxine A k a , B, fomph %%rho, the late B,Ran Mudoola, and Br.Ckistine 8bbo. The situation is a the Caibbeaxt - the ove ties of MDS reseacfi in A ~ c and schofas whose expertise is sorely needed in so many dorn co-editors have been added to the colle~tion,as. w l l as the subsequently invited papers of Regina McNamaa and Maryinez Lyons. Elizabeth Reid generously allowed us to include a paper that advocated placing women at the center of analysis, as well. as the paper on development that she presented at the conference. The AIRS epidemic constitutes a serious chdlenge for the vvorld today, In 1995, sub-Sahara Africa had by far the largest number of people living with Human uttodeficiency Virus (HN), about 13 million, representing around 65% sf the world total. Though less than two percent of sub-Sahara" ppctpulation of SS X. ~ l l i o n , fhe known destructive potential is there. As has been demonseated time and again, hows neither pizysical nor social boundaries, but follows the pahs of humn interactions, It is an epidemic that must be viewed in the the medical, nu~itional,eeonornic, and political conditions of Africa, h terns nnaX.nu@ifon md malaria, for exmpfe, are far more severe than AIDS. Civil was and fams of state and goup violence have produced drmatic rates of death among the civilian populations of African countries. Famines, starvation, and refuges are ;pmof the African landscape, The pietwe may seem to be less g i m in the Caribbean, but there too poverty sets the stage for the transmission of HIV. The very g i m features that tend to overshadow and finirniz MDS also provide its context, Thus, in neither Africa nor the Caribbean is the crisis limited to AIDS

X

Preface

alone. AIDS should not be treat4 in isolation or for that matter as a peculiar sociological. phenomenon. Rather, it must be deaIt with in retsion to its historical and social contexts and explord in terns of its consequences for the peoples of Africa and the Caribbean. It is not solely a problem of medicine or an opporlunity to apply pmicular statistical procedures. Research techniques should not be taken as the sum of historical and sociological analysis. For the social scientist there is a real problem that arises with crisis situations such as wws, famines, and epidemics. The problm is how to avoid retxeating into anecdotalism and crude journalistic simplifications, as well as hiding b h i d or redwing human conditions to statistical measures. The challenge lies in integrating crisis situations into sociological and historical analysis as an integral feature of the human condition and an essential eXement of social theory. Within the contexts of these major crises, MD5 has demonstratd the Xirnits of our medical abilities and placed in question our 19th centuq sociological legacies. ZDS, to elicit nations such as society, sate, and nation seems explanation in fomulations such as "Eurasian," """African,'" or "Hispanicf'sf;PUctures,as at least one demographer studying MDS has done, =ems bizme (Tierney PlJaw York Times,Oct. f (3, 1990). Treatment and prevention fie beyond the boundaries of these intellectual and political fabrications and require mare precis units of analysis, They point to the necessity af understanding cultural and soeial processes that frame and yet, transcend the medical moment. S an ediexplosive temporal and spacial dimension to HNIAZIDS, The virus is n afely expressed as AIDS and is disseminaed along the main pathways of essential human activities. ft spreads without being diagnosed by its human carriers. In society &er society rhe highest mtes of infection me among men and women between the ages of I S and 45. mese are pokntialty the most productive yess, They are also the yeas of greatast geographical mobility. Education has become an essential aspect of prevention, a social constfaint on a biaiogical condition and a mdical predicament, As yet, there is no cure far AIDS and the deeline in the rate of AIDS in Ulfanda, for example, has been the product of a prolonged, systematiceducational campaign on the part of an A&ican government and Iocaf and inkrnatianaf organizations (McKintey, 1996: 1). There is the need for scholars and reseaschers .to refine their formulations and for the moment to discard their big notions and their huge comparisons. For once historians and other social scientists have a grand oppogunity to explore the appropriateness of their theories, concepts, and methods, to say nothing of themselves and the behavior of others, For the moment science has failed us and positivism and empiricism are put into the balance. But, perhaps, even mure important than that, AIDS knows no boundaries, There is no intervening vector; human kings are the cmiers. HIV strikes us at the very process of biological and social reproduction, and, thus, at our posterity, Surveys of knowledge, attitude, behavior, and practice are of limited utility when placed in the practical situations of war, famine, and disease. They tell us little about the relation of AIDS to the movements of Istbor and problems of structural adjustment; they say little about

procedures for recovery and rehabilitation, They do not produce accounfability and responsibili~ktween governing regimes and the governed. The ruling classes do not have to rely solely on their own locaX systems of health for medical treatment. The poor are hrced, however, to look to local dispensaries and their own meager financial and social resources, S has folfowed the routes of trade and c It is significant that and services, We are not here conce the movement of lab transport and inkamcture, but with that which underties and produws relations of production and exchange. mere is more to AIDS than '"ruck drivers" and ""postitutes." The spread of AIDS in the Gwibbean and in central and southern Africa is no mystery, But what we still know little about are the implications of MDS for local populatians and their productive potential. AIDS has also spread within the contexts of violent strmggles for power md is cerlainly to be found in the ranks of the ~litiury,Just how effective is an whose soldiers have succumbed to AIDS, especially in countries under rnilitwy rule? Though it knows na boundaies, we think it not incanmt to say that AIDS tends to concentrate among and is forced upon the politically and economically disempowered such as women and children, Mwh resemch and attention should be given to these tvvo populations, as weff as to the elddy, m o r n do Xhey ewe for and who will c a e for them in light of AIDS? problems of AIDS should force us to look not only at the dying and the ate circuxns&ncesof death, but also to the conditions of the living and their futures. For us many questions remain, such as the relaeion of AIDS to economic development, its effects on domestic amangements and the education of children. How will sacial units manage in the event of Ioss of personnel? WilI AIRS affect local explanations of events and perceptions of human rights? How wit1 intern* tional organizations address AmS in Aeica and the C~bbeapx?mese are but some of the questions which are explored in this collection of essztys, Xt is perhqs n a e s s q to explain why the focus of this volume is AIDS in Africa and the Cwibbean. The case studies presented here are not intended to reflect any kind of African diaspora or to postulate an African connection, Rather the concentration on tvvo African and three Caribbean countries is a function of the research intemsts of the editors as well as a function of their membership in the Internationd Advisory Croup of the HEV Center of Columbia University. The cases presented are most cerl;ainiy not to be t&en as in any way representative of the ""Third World" in contrast with AIDS in "western" mcstries, It is the firm conviction of the editors that AIDS must be studied as a global phenomenon. Several of the essays of this volume attest to the significance of travel, tourism, and migration in the transmission of HIVIAXDS. In comparative terms, migration is the theme that unites the case studies Gram Puerto Rico, the Dominican Repubfie, and Cuba in this volume. The global ethnoscape of the f98Q"sso delicately drawn by Arjttn Appadurai (1992) is ripe with the dangers of HW infwtion. Migration is, of course, as old as mankind but it has b w ~ m eaccelerated since the 191iOs when, as the iron grid of cotoniaiism was

Preface

xii

l i W .from so many new nations, the technology of the United Sates' technical and intellectual imperialism encouraged hegemnic appreciation in young nations and brain drains h r n old, In the 1 9 8 0 asylum ~~ seekers, eeonomic xnjgrants, and family reunification accounted for yet another increase in population movement from western Europe, Travellers (defined by the Uniled Nations, the World Health Organization, and the International Organization for Migration as people entering a country for three rnonths or less) became, as far as NDS cantrof. was concerned, a risWWget group, People behave digerently when they traveil.Tourists travel to seek adventure and new experiences, and to make new ffiends, Sex is cerzainly part of the attraction. The usual norms of the home environment no longer control, behavior, and travellers separ&c;d from their families are all at pmiculiar risk (De Schvver and Meheus 1990:55).

In 1990 at a conference of the Society for Applied Anthropology held at York University, England, on "Assembling knowledge to address human problems." Bond and Vincent began to delineate the conmpt of Multiple Contingent Risk or MCR, The risk situations of Eabor migrants are typical, m e y tend to live in fow cast, unsanitay housing situations; they are subject to unemployment, underemployment, and poverty. They may, as Susser suggests in her chapter in this volume, br: separatd fiom pNtners and families; many may be lonely; most are vulnerable and exploited. Such conditions lead to poor health in general, less access to health services, and a higher incidence of HIV-relaLed risk behaviors. Further, such an& have less access to H N education and infornation. Susser describes HIV being brought to Puerto Rieo by migants returning from New York and New Jersey; Figueroa (1991) similarly reports the first cases being brought ts Jamaica by returning migrant k m workers. Drugs and homosexuality in the ""First" world contribute to the introduction and spread af heterosexual AIDS in the "Third" world. The importance af ,tourism in HIV transmission has been documented for both and naval bases. AIDS is parr Africa and the Caribbean, as has proximity to ~ I I W of the global economy. Furthermore the AIDS pandemic must, we suggest, be related to global traff eking in drugs, international sales of blood, and similar midtwentieth century transnational developments, One of the topics that aroused considerable interest at the conference at which these papers were first given is the origin of the AIDS epidemic. The book by Riehard and Rosalind Chirimuuta, AIDS, Africa and Racism$published in 198'7? captured a controversy in fuff flight. Whether Western scientists and journalists were inadvertently racist in speculating on the origin of the disewe in ""drkest Africa" is istill a matter raised priodicafIy in local African, Cmibbean, and African h e r i e a n newspapers. Most recentXy, Cindy PaEon in Iaventing AlDS obsemd that Lue Montagnck insistence on claiming that "AIDS began in Africa," despite no valid evidence or critical understanding of the social versus scientific meaning of

Preface

xiii

locating origins, suggests that he is also Iagely influenced by cultural stereotypes (1990: 149). Patton extends the agumenls of R i c h ~ dand Rosalind Chirimuuta, She is concerned to investigate haw the Western invention, as she sees it, of Africa as poverty striclcen and heterosexual set medical science on what she catls a genocidal course. She has in lPlind the fact th& Phase Three vacine trials are being e m i d out in African count.ries when they would not be cmied out in Europe or America, She also deplores the readiness of medical scientists to absorb tlte early inscription of SIim disease by Ugandan clinicians into their own conception of AIDS'* The prevalence of malarial plasmodium in Uganda fed thereafter to the recording of many false HIV positive results, The editors are very awme of a major lack in this volume. We do not intend to mwginalize or silence the voices of Africans and persons; from the Catbbean, either researchers ar AIDS victims, We are very conscious that researeh in Uganda, for exmple, could not have been done by the anthopologists and historian whose work you will. be reading in this volume, were it not for Ugandans' willingness to share their howledge and views. "Re two micles by David Serwadda, the clinician who first diagnosed Slim in 1%2, are taken by Bond and Vincent as benchmarks in the histoq of the AIDS epidemic in Uganda, In many respcts, the sady of HN/M]E)Shas collaps4 t k boundaries between researchers and practitioners. The disease transcends parochial concerns and requires cooperation in collecting and disseminating a wide range of information to i n h m schalarship and policzy. This coHeetion of essays is a step in that direction, Ceovger C. Bond Director, Institute of African Studies

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Acknowled The Institute of A&ican Studies wishes to acbowldge and express its patitude r its major suppoa in ass M from the Center's pant, to thank the conferem pastieipants, and the African Institub's faculty, studen&,and sQff, all of whom made the conference passible, Spe~iafthanks are due to Ms Rand, the African Instit-utek administrative assistant, and MoEly Doane, who wrked on the manuscript.

ta

I& Susser and George C, Bond

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PART ONE

Introduction

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The Anthropology of AIDS in Africa and the Caribbean George C. Bond, John Kreniske, Xda Susser, and Joan Vipzeent

This book emerged &om discussion mong medical anthropologists, anthropologists who had worked in Africa and the Cilfibbean and researchers in public health. In 1987, we formed the International Advisory Group (IAG) of the Cenl@;rfor Clinical and Behavioral Sciences and began to try to work out how the howledge and mefiods of antkopology could be most useful in addressing the H N pandefnic. In 1991, we organized a conference entitled The Arathropetlogy of A i h in Afiiea anand the Caribbean: the dimensions of an epidemic, sponsor& by the HIV"Center and the Xnstituk of Africatn Studies at Columbia University. "Ibis edited volume represents some of the pawrs &om th& conference, combined with reseacb papers that emerged later from the IAC. s chapter and the next one by Anne Akeroyd provide an introduction to XDS. Dr. Akeroyd's chapter reviews the literature on the social and cultural context of HP?in AEriea. Her brilliant critical essay has methodolo@cal,conceptuaf and theoretical material that goes far beyond the African continent. The essay is essential reading for anhapsfogists and, policy m&ers world wide. Fdlowing the in~oduetion,t& first section ofthe book involves a series of case studies, some by nd some by researchers in public heal&, Chapters three tltrou& in the C&bbem. Chap&rs six hough nine represent cam studies from Akica. The second sation of the baak presen&three analyses of policy issues followed by a concluding statement by Skirley Lindenbaum,

4

George C. Borzd, John Kreniske, Ida Susser, and Jotan Vineeat

No one anthropological approach is privileged. Yet, the overalil perspective assumes that politicaVeconomic conditions will structure as we11 as be changed by the development of public fieaitth policy, the fornation of social movemen&and the ernesing and dissonant discourses around HIV, We have consciously included ethnographic case studies, analysis of issues by researchers in public health and policy statements and critiques in this edited colle~tionin the effart to demonstrate the nwessary interaction between the different areas, Anthropologists have been known ta avoid or denigrate research iate policy implications, espciaXIy if the work was, in fact, designed to answer palicy questions. From the other side, policy analysts have avoided the use of mthopological rese~chand literature, viewing anthropological c too abstract and resemch procedures as too lengthy to be of use .for policy decisions, Both these bmiers to the co unication and disse informtion have been breaking down in the past decade. The permeability of the disciplinary walls has been greatly increased in confrontation with the disaster of EfN (National Academy of Sciences f 986; Het-dt and Lindenbaum 1992; Fox and F e f99Z;Van de Walle 1990; Singer et. al. 1990). ft is hoped that the .format of this book and the wticEes collected here will add to the growing interaction and productive debate among policy makers, public Xzealth researchers and anthropologists. Since this project was conceived in 1990, Asia and Eastern Europe have been rapidly acquiring HIV among ever-increasing numbers of their populations. However, since the first poor countries to manifest the H N epidemic were in Af'ri~a and the Caribbean, the e p i d e ~ cour , qwstions concerning it and our knowledge of it are hrther advancd in these areas. Findings in Africa and the Caribbean wit1 assist in addressing problems developing in areas suck as Thailand, India and Poland, The Moving Frontier of' HlV Idectian

Legacies of colonialism and poverty have combined with the contemporary global economy to worsen the impact of "natural" "disasters in both Africa. and the Caribbean. Drought and famine have devastated regions of Africa, bringing with Lhem inzmdiate death through epidemics of infectious diseases such as cholera as well a high rates of momlity konn maInutritian, Each of these disasters also rnstrks the trait for the "moving frontier" of NDS as repomd by Bond and Vincent in this volume, Governments with few financial resources are vulnerable to military takeavers, ethnic hostilities and undermining by international intervention, both direct and indirect. Thus, war and insbbifity have exacerbated the risks of HIV infection in Uganda, (as documented by Bond and Vincent in ch;;tpter 6) as in many parts of the Third World, Military movements combined with unprecedented shifts of civilian popufatians, such as the tragic situation in Rwandtt and the continuous desperate

depmure of Haitians from Haiti, all disrupt f a ~ l i e sand , leave women and children with few options for survival, Such events create p ~ m e conditions for the unfetteifed transmission of the HrV virus, as well as many other diseases and violent forms of death.

HP4 is one source of crisis and suffering among many that desperately call for unity in Europe or the United States where attention, Even in a rniddle income c people expect to live to old age a what diseases they may coneact, NXV battles lFor cenkr s&ge with other life-thakning diseases, Social movements have been organi~dto combat patterns of discri~natttionand stigma associated with the disease and to convince national policy makers and heal^ care providers of the hazard and the ertomity of the suffering caused by HIV infection, Even in ities where &eatment is insured and comforbble lifestyles affordable, oncerning the distribution of funds for research and treatment, and the usefrxfness of early &sting and diagnosis and its impact on the quality of daily life, have constituted an ongoing discussion. In the poorer counlries of the world as indeed in poor aeas of the United States, as of making choices as to the allocation of scuce resources is more extreme. Should HIV take priority over other infectious diseaseswhere should these resources come kom and who should receive them? Xi! prevention is the only feasible strategy, should funding be devoted to the prevention of WIV alone or to ;~ent=ral publie: health and community health education egoas? Anthropologists and public health resemchers and policy makers have t-o make hard choices. They have ro balance their convictions against the requirements of the situation, Thus, as the case studies in this volume dernonsr-ate, understanding EIIV infection in poor countries requires researchers to struggle with a number of issues: S U G ~as income inequality, land reform, the alienation of peasants from the land, labor migration, colonial and post-colonial psl_ttemsof industrial exploibtion, the resulting proliferation af infomal settlemen&,gender hierachies and the increasing separation of children from their h m a l family connections. It is only with an understanding of the specific social and historical contexts that an effective mobilimtion for the prevention of HP4 or coping with the devastation of HfV can be implemented (Bond and Vincent 19"3a; Susser and Reniske this volume; Fee and Fox 1992; National Research Council f 989). Poverty and saciai dismption force us to evaluate moral issues within, a different frame, Questions which rPrJpear to lead to one answer in the United States may genera& contrasting responses in ather situations, Consider simply whetl-xm to nd that a young mother with possible symptoms should be encouraged to seek an HIV test.

George C. Bond, John Kreniske, Xda Susser, and Joan Vincenr

In Afica, heterosexual sex and its corollav of perinatal transmission is viewed as the major soume of NIP4&ansmission.Because of the impoflance of heterosexual trans~ssionof WIV in Third World countries, medical and pubfic health researehers have ijacussed on patterns of sexual contiaet, Anthropological research and methsds have been called upon to provide information about changing sexual behavior and expechtions among digerent populations in Akica. White information concerning these issues may be essential for some epidemioXogieaX research, anthropologists and other social scientists have been wary of examining data concerning sexual behavior separately &om the broader social context in which it was gathered. Resemch has consistently demonstrated that sexual behavior is conditioned and changd by changing social organization, economic expectations md historicd events, even by HXV itself. While sexuality is an important factor in any analysis of HIV trmsmission, patterns of transmission can only be explained within the broader societal context, such as those analyzed in the case studies presented here, As Lyons demonstrates in her chapter on the emwging discourse mound ""African Aids," in Uganda, and as other reviewers have noted, studies purporting to explain the transmission of HIV among different populations by citing such factors as "promiscuity," tend to stigmatize or blame cer&in groups while failing to explain patterns of transmission (Lyons, this volume; h k a h 1991; Schoepf 1992b; Van de Walle 1990), Multiple partners alone neither a necessary nor sufficient cause for the Eansmission of HIV, As Reid" ardcles and others in this volume demonstrate clearly the social and economic organization within which sexual interwtions occur afict the path of the NW virus,

Cuban Pubtie Hea;lth Potllcy Two cme studies in the first section, on Cuba and Africa, address the issues of

HXV from a broad pubfic health perspective, McNarnara addresses the issues sf STDs and wmen's access to health ewe which will be nobd below in the discussion of women and HTV, Santana provides an on-the-ground review of the Cuban containment policies and argues that while this may have worked well during a particulm period in Cuba, it would be a mistake to conceive of such a policy transplanted to the United States, Santana" chapter is an important corrective to recent anthropological debates on &is issue, She demonstrates the processuat development of the Cuban system and shows that while originating as strict containment, policies were f"ort=edto change over time as the number of infated people and the lifelong nature of the infection came to be understood. Some of the arguments present in the anthropological literature have neglated the changing nature of the Cuban policies

themselves and either suggested that they be adopt4 (as if unchanging, see: Scheper-Wughes 1993) or condemned (also without rmognition of their ongoing evolution, see Bolton 1992). ndation that Cuban containment policies be Scheper-Hughes, in her reco considered in the United States, ignores important fawts of the Cuban situdion which are illuminated by the Sanhna micle. The Cubans who were found to be HIV positive and confined in the sanatoria were treated as an elite with access to televisions, VCR's, air conditioning and good fwd. They were considered by other Cubans ta be living in Be height of luxumy, Such a policy would be too expensive to maintain were the rates of HXV serspositivity to inerease and certainly too expensive to maintain in the United Staks where even the costs of providing &equate housing for people with AIDS has become a political battle, mus, the success of the Cuban policy of containment depended partially on the small numbers of inkcted people, the encompassing and effective public health records and tracking procedures and the life advan~gesof remaining confined. None of these factors me present in tfie United States, Women a d H W l~fect3bn

Another major a e a relating to the prevention and treatment of HIV in poor countries concerns the particular problem of women and HTV and the complex ~l;ex?der hierxchies found in dtigerent conbxts, This volume raises such issues in the review micle by Meroyd, as well as in sever& of the cme smddies, including Susser and fieniske, McNmara and Reid. As Schoepf f l99 l), Ankrsrh ( l99 1) and Reid (this volume) have wgued most effectively, women in mird WrEd coun&iesare at an extrezne disadvantage in the prevention and Qeatment of WV. This is reflected in the growing number of women as opposed to men who are becoming infected, It is similslrly reflected in the Unit& States where women becoming infected through heterosexual sex, while still under-represented, constitute the fastest growing group of persons contracting HXV infection, HIV Infection and Gllohl Travel

HXV exists in a. world which has become increminglly global in the movement af both capital and labor. Labtor nnigration ta and from the Caribbean to the Unit4 States has been a major factor in the migration of HXV infection. Similarly, the development of tourist indus~es,frequently basd on U,S. capital as a replacement for the decline of profits h m older colonially estzlbtished sources such as sugar cane, has also traced the routes far HXV to follow. keniskek sme study of both labor migration and tourist travel through the Dominican Republic begins to exmine the complexities of these different processes within the context of the movement of global capital. He documents the need for Haitian labor on the Dominican sugar plantations and the permanent unofficid settlements of men, women and child migrants who work seasonally in tfie cane fields, Like many

8

George C, Bond, John Kreniske, Id@St,csser, and Joai.2 Vincepzt

borders crossed by migrant laborers, the borders for HIV are much less well defined than maps and national boundaries imply. Susser and Kreniske's article, connecting experiences in Puerto Rico with the lives of Puerto Rican migrants to the United States adds another dimension to the discussion of the ways in which fabor mobility opens the way far HIV. Santana" description of Cuba within a limited time fiame, demonstrates the contrasting policies and experiences reflected in the political differences of the Caribbean islands, While Cuban men and women may or may not, differ in their expectations and sexual behavior from people in Puerto Rico and the Dominican Republic, government policies and differing patterns of labor migration and economic dependency have proteered Cubaas, so far, fiom the high raks of HIV infection found in other parts of the Caribbean. As political shiAs and the disappearance of the polarities of the Cold War open Cuba further to tourism and oscillating labor migration, different issues may quickly emerge, Policy Issues The second section of the book includes four micIes on policy issues. The first two articles by Reid address two issues central to the concegtualization of policy concerning HIV. She herself speasheaded the AIDS division of the United Nations Development Fund and worked directly with implementing pikey. She reorients the perspective of public health workrs and development agencies prone to view w m e n with HW as represent& by ""postitutes" or ""sex workers," She points out that women at risk for WIV in Afiica and elsewhere are, in fact, frequently monogmaus, PuifiIling the expatations for mothers and wives in a broad spectrum of situations. Since women are at the center of domstic reproduction and sometimes of the household economy as weft, the illness and loss of women in their middle years opens enleire fmilies to destitution and disintegration, Reid then proceeds to discuss the overall implications for development:of an epidemic which devastates the careukers and economic providers and leaves children and the elder1y to work k r the future af the society, The next article, by Rosalind and Ri~hardChirirnuuta, discusses the origin debates around AIDS, IIn its claims that theories of the origin of AIDS in Africa were inspired more by Western stereotyps than by hxd data, it reflects many of the suspicions of people in poor countries as well as Af"rica;n Americms and other groups in the United States, ClearIy, this is an irnporknt discourse within the HIV literature and must be taken into account in any analysis of the impact of Western medical research on HIV prevention and treatmnt in Africa and elsewhere. The last chapter in this section, by Meredeh Turshen, examines elarfy responses by the US Agency for International Development and its subsidiary Family Health International (FHI) to the AIDS epidemic in Africa, Turshen argues that initial reactions involved a misplaced expeefation that individual change supported by the provision of condom and emphdsis on safe sex practices would adequl;ltefyaddress

the overwhelming problems of the new disease. She suggests that attention to broader issues initially would have fed to more eEective and fundamental prevention and treatment efforts, Many of the issues raised by Tursben have subsequently been taken into account by FHX, This chapter represents an analysis of the forms of discourse and instrumental intervendons which appear to come most easily to Western medical practice, The concluding remarks in the volume were prepared by Shtirfey Lindenbaum and represent: her thoughts based both an the articles in this book and her wide puticipation in resemh on HIV infection in the United States and internationally,

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Sociocultural Aspects of AIDS in Africa: Occupational and Gender Issues Anne V. Akeroyd

As brig as there is widespread poverq, mrginalimtkn of risk group$#counterproductive labor practices anal h i a t of womeR % rights, the findmental t h ofiptdivid~~~ls and societies whi& is requird to ultl'matelycorztmr! AIDS in Af&ca wl'll not occur (Moses and Plummer 1994:127).

Introduction The HIVIAXDS epidemic continues apace. By late X994 Africa accounted for a third (34%) of the total reported AIDS cases in adults and children but two-thirds 00%)of the estimated total of global MDS cses; some three-fifihs [over f f Allion) of the estimM cumulative global total of HXV-infections in adul&;and the 8 million adults estimated to be living with HIV-infection there comprised one half to thxeefifths of the worldwide to&l."~orn 7700,0.00 children were born to WXV-posilive women in Afica in 1993atoneV2 Nearly 1 million African cbildren under 5 years are estimated to have b e n HN-infected; some 4 million children axe expected to be AIDS oqhms by the yem 12W;in some mess over half the children under 15 years have;lost a pment; and the age at which infection oectlrs is getting lowe nearly two thirds.of infections are occurring amangst people under 22 years of age.3 By the year 2Q00 the World Health Organization expects that some 7.5 million women in A&icacould have beeome inffzcted.4The consequences of HIV-infection and AIDS will fang continue; but the possibilities for action are limited by stark economic and politicit) realities. As WHO notd, repofiing on decisions relating to

12

Anne F: A k e r d

MDS at the 1994OAU sumAt meeting in Tunisia, most of the targets set at the 1992 meeting in Dakar had yet to be met.' mere is broad ageement on the major characteristics of the epidemic in Africa. The clustering of highly affected areas implies that social and geographical contiguity is an impartant factor in the spread of HTV across boundwies (Pela and Platt l "989~3).Some contributory factors rnay be cultural, linked especially to patkrns of gender relations and subordination of women, and to social and kinship bonds; some are linked to colonial and contemporary politicaf, and wonomie developments (see Zwi and Cabral 1993; Bassett and Mhloyi 1991;Packad 1989; and others are the result of manmade and natural disasters. Marked geographical and socio-sp;rtial differences in seroprevalence rates have b e n found, with higher rates normally being hund in urban populations. Rurd aeas, hough, cannot escape the consequences af the epidermic given the social and economic linkages between rural and urban aeas and the movement of people, whether in labor gati ion xeas or not.h Even if the incidence of infedon is low, rurd populations may face a considerable economic and psychological burden, cming fi'or sufferers who return to their rural villages, andlor losing remittances which maintain many rural househojds and rnay be critical for socio-~anomicdifferentiation. Heterosexual transmission accounts for over 80% of cases; in Masaka District, Uganda, it now applies to 99% of adult infections (Nunn, Kengeya-Kayondo, Mafmba et d.1994).The smIl propof.tion of cases attributed to blood &anshsions has been reduced hrther by safety measures, though practices vary between and within countfies. Women and children are co only said to be more exposed to transfusions than men. Drug abuse should not be overlooked as Pela and PIatt f 1989) w m d , The use of Nigeria, Zambia and now South Africa as internationai transit routes has increased considerably in the 1990s and inevitably supplies are diverted into the local setting. Though the users of hard drugs have been mostly well-to-da youth currently the rzppeafance of crack cocaine in South African townships is causing considerable concern, The sex ratio of infecbd people, though varying between age gaups and between studies, is generally said to have been appmximately equal firam the outset. Peak age HIV-prevalence has dropped, especially in women afiong whom it is generally given as 20-24 years; a high proportion of incident infections is now k u n d in people under 25 yeas and especiafly young m m i d women; and there are also more women dying and dying a an earlier age than are men (Deeosas and Pedneault 1992:228). The progression to HXV-related conditions and to AIDS seems to be faster in Africa and the time period between diagnosis and death is often shoa; and a high proportion (up to about 40%) of children born to HLV-infected women will be infected and will die under S yeus. Though these conditions may be a consequence of opport;unistic infections and generally poorer ill-heahh, they may also reflect patient behaviors in presenting later far treatment, Xtis not always clear, however, whether the statistics are ""artifactual," a reflection of refenal practices and gender, socio-economic or occupational biases in access to treatment, of the reliance an pregnant women, STD clinic attenders, and female

prostitutes as sentinel populations, or of research practices-Gabral(2993:158), for example, has suggested that one reason why so many people with AIDS needing inpsltient case are in refe~allteaehinghospitals in cities is because senior cXinicians welcome the opportunities for research.7A striking change in the seroprevalence rate among women in Bangui was attributd ts a change in sampling slrategy (Mathiat, hpage, Choaib et al. f 99C));and participanl may ofien be resfricted to pmicular age cohorts such as adults aged 15-49, It is also passible that the irnptiet on women is u~ciev-emphasized:the sex ratio might alter for the worse against vvomen were the African surveillance MDS ease definitions (Bangui, Caracas and Abicljan) to be made gender-sensitivee8 Much research into social and sexual contexts of &ansmission has been driven by the concerns of epidemiology and its emphasis on scapegoabd 'risk groups3n monitoring the sprerid of infection, such as female prostitutes, "street" "youth, and mde long-dlislmee tmck drivers, miners, military and paa-military goups. The cornmonalities of these disparate groups, such as urban residence, low socioeconodc status, their mobile or transient character, fore& segegaticzn of the sexes, md dienation or mzgindization, point to some of the socid and w a n o ~ circumstmes c which underlie risky sexual behavior (Moses and Plummer 19994:I 26).

However, in areas where prevalence is high, and where "Hftf-1 inbtion has spread well beyond the '&aditional%igh risk occupationalp u p s into the general population it is impomt to look at risk behavior and the so~iatand e c o n o ~ circumstances c that de&rminebehavior patterns" "wley, Matamba, Nunn et at. f 994:79), Though this last view atso reRects the assumptions of biomdical discourse: it shows an apprwiation of external constraints. Xndmd, despite their concern with emphasize that risk-t&ng behavior is not solely risk ""groups,""Moses and Plu an individual matter: It is c ultimately by social and economic -Eactors, and ""iflueneing the underlying causes of the epidexnic will do much more to conaot the spread of HIV infection than the best educational or counseling programes" 1994: 126). Attention to sociocuttural aspects and structural factors moves discussion of the problems of transmission away from blaming people far failure to heed warnings, mucation is important, but heeding and being able to act on advice are compler matters often beyond the control of an individual, as social scientists have long asserted: the argument is indisputable,

Sociocult.uraX and Socioeconoec Aspecb Afflictions and Affectioas "Fhe &ag&y of AIDS strikes not just the individuaj with the de8dty infection, but his or her fadly and community as wlf(McGath, Ankrah, Sehurnartn et al. 1993:s6).

14

Anne V, Akercryd

The personal, gender& and socio-economic impacts of HW-related illness and NPlS will vary in different sociocultural and eeonomie systems, between rural and

urban areas, between social categories and age cohorts, There will be differences in direct and indirect impacts depending upon the stage of the household developmental cycle, whether the household concerned has a male or b a l e head, and whether it is AIDS-afiFTicted (households with an ill or deceased member) or AIDS-affected (households for which the death or illness of a family member has meant lost of cash, l a b r or other suppoa ox the addition of orphans) as Bstrnett and BlaiEe (lW2) demons&ate, Given the netwoh within which HIV-infwtion may spread and the likelihood of multiple cases within a household or extended family, y have arisen in some cases- in other problems arise. New foms of f a ~ l structures Uganda, for example, ""cildren-alone"" families (Obbo 1991, cited in Ankrah 1993:18) and gancfp~ent-headedfamilies (Beers et al. 1988, cited in Anhah 1993:18). The presumption that in Africa the extended family always provides a safety-net has at last been questioned: Seeley, Kajura, Bachengana et al. (1993) found that caring fell primarily on individuals who raeived only limited support from kin and neighbors." "Care in the co unify" and ""hausehold coping" means mainly care by wmen: du Cuerny and Sj6berg (1993) point out that planners often explicitly or implicitly expect wmen to shoulder the burden, As domestic bsks are gender-digerentiated male cmers m;ly have to take on roles -far which &ey me not well-equipped. Where the e p i d e ~ is c widespread, as in oher disaster situations, eventually there may be too few people to cope financially or domestically (Schopper and Walfey 1992; Bmett, and Blaikie 1992; McGrath, Anhah, Schumann et al. 1993; Hunter 1990; Swley, Wagner, Mulemwa et al. 1991). Clustering of cases and pockets of infection within famifies and neighborhoods is to be expected, given the availability and acceptability of people as sexual pastners and the restricted networks within which most sexuaX relations will occur (de Zalduonda, Msamanga and Chen IBSE)),though little is known in detail about the nature of socio-sexual networks and their ethnic, organizational and religious associations. Obbo hiis brieay described social and supportive networb in Ifgmda, showing that there is o h ""vvidespreadendogamous mating mong friends and eoworkers" "bbo 1993b3952). One was a rural network of cultivators, public sewants a d tpaders. Two were urban &lienetwork a m n g members of the ssrla~risttin pubfie rce, one fethni~allyheterogeneous) based on friendships begun e other (ethnically homogeneous and including some related pople) based on secondary school attendance; and these networks wen; also sexlinked (Qbbo X993a and b). There are other personal aspects of efass, occupational and work-related matters and impacts about which little is publi For example, when housing or housing rciaE employer, a colonial fegxy in e.g. allowance is provided by the state or c Zambia and Malawi, HIV-infected persons who lose their jobs, their spouses, and their children may find themselves homeless. Xt may well be that some examples of sick or widowed people going back to the rural meas, usually presented as a personal

Sociaclaltural Aspects of AIDS

IS

choice, actually arise from lack of choice or from eviction, In the colonial period in central A%ia long-tern security and welfare provision w r e ensured by maintaining mral relationships and rights: in the contemporaq era of insmuriQ, so too is the rural safety net vital for many, and coping with MlV/AIDS is no excqtion. In general, NNiMBS impacts more heavily on the disadvantaged, the poor and the less educated, against whom the balance may be tilted (de Zalduondo, Msamanga and Ghen 1989:18 1). A recent study of socio-economic status and seropositiviE_yin Msaka District, Uganda found three indicators (house type, Iand holdings and household item index) were inverslely associated with sseropositivity, and that this held also for spouses and daughters but not sons, Hawever, some indicators such as a permanent brick house might have reflected past rather than cunrent walth; and the conclusion is cautious: There is prottabfy no simple ~sociationbetwwn any one Eaetor of poveay and risk of HXV infwtion. It is likely, however, that there is a link between. m individual" Imk of access to resources and the ecanornic strategies adopted fo survive and t.o supporl a fadly (SeeIey, MJamba, Nunn et al. 1994:87).'~

-infection in people of dl social and economic classes, There is evidence of though repoas &om and about Africa have stressed the impact on &lites,the urban educ;zted ruling ellasses, the bureaucrats, technocrats and businessmen, and have regarded these .;is particulafly at risk. Class and occupational aspects have not been welt-resemhd, and much infornation is anecdotal or comes &am brief reports in the media about, for example, prsblems of recruitment in the medical sector or deaths in the banking seetor. The lack of specificity about personal and socioeconorxlie details in clinical and epidemiological studies makes well-founded swcufatiarr difgcult; and, even when women are iwluded in a study, occupational deuils may not be given by sex (see Nunn, Kengeya-Kayondo, Malamba et al. 1994), or only men" occupations given (Berkley, Widy-Wirski, Okware et al. 19813), SociofogicaX inexactitude in the use of terms jike "6lite" for waged manual to misapprehension,The sacial differentials in HIVIAXDS workers &so c=on~bu&s infection, seroprevalence rates and survival times me still not fulXy clear; some of the apparent associations may be doubted; and as more studies appear and as the epidemic spreads so, too, do the patterns and impacts change. The Masaka District study used six occupational categories far respanden&; as most people had two or mare occupations, pro&ssional occupations were given preference in allbating people to one category.These were: cultivator (also included craft persons and household stafo; trader (atso included shopkeepers and medical practitioners); teacher (and religious teachers); other salaried workers (e.g. =my personnel, police, drivers, office workers); other occupation; and no employment. The seroposidvity rate w s 25% far kther salaried warkers" for other categories the range was 3.7-8.3% with teachers and the unemployd displaying the lowest rates

16

Anne K Alceroyd

(Nunn, Kengeya-Kayondo,Malambs et al. 1994).Higher seraprevalence rates mong urban dwellers were found in a study of seropssitivity mong 5690 pregnant women in a mostly rural s e a within 25 h of Butare in southern Rwanda from in 1989-9f Of the women, 96.4% were S,the rest being domestics (1.G%), skilled workers (0.5%)md other (1-5% - housewife, civil servant, vendor and unemployed). For the 528 women who were HIV-serogasitive, prevalence among farmers (8.8%) w s far belaw that afdomesties (22.5%), skilled workers (24.2%) and other (20.2%). The study also investigated &e serosatus of 5 17 1, husbandslp~tners,433 of whom were seropositiw, Farmers comprised 83.8% of the total; the rest were civil ssrvants (6.6%),sblled workers (G%), drivers (1.2"%"0), merchants (2 %), and 1.4%ather (day labar, domestic and unemployed) (1 96). Male fwmers, too, showed the lowest and drivers (37.5%) the highest seroprevalencerate (B%"o) skilled wrkecs (22.3%)m rates (Chao, Butterys, Muganganire et al. 1994: 372, Table 1). A study of sexual fa~toyyworkers in Tanzania concluded that partner changing and condom infornation, education and co cation (IEC) programs should be expanded ir clients (Borgdo~f,Barongo, Mew11 et al. 1994). The impact on the Xabor force in Zimbatowe has been stressed for several years, and wtive measures have been taken by employers to provide health education about HN/ADS and S m s , the benefrcid effects of which we clear (Williams and Ray 1993)." Analysis of records of medical aid societies and insurance companies by e~onomistshas revealed the socio-econoPnic impstct upon the labor force in mare debil, Whiteside (19"33)examined AIDS deaths of life policy-holders in Zimbabwe from f 986 to end-April 1991, For group fife policy holders the three largest categories were general workers (28,3%"o)clerks (1 1.2%) and ~scellaneousskilied f9"7%), the remainder being mostly skilled workers; among individual policy holders soldiers (38.6%), miscellaneous skilled (17,5%) and teachers (20.5%) headed the list. The averqe age at death was fairly high, 37.5 y e a (range 3 1.444. X) for group policy holders and 34.2 years (rqnge 3 1.1-40.6) for individual holders; almost all w r e m m i d ; and the incidence was higher among mobile people. There are shortcomings in swb data (though the comp;mies are now improving their record beping to facilitate i-mpaictanalyses) apd there me sowe inherqnt bimes: policy holders are mainly male, and there are differences between those covered by group and by individual policies md by different companies.'4 Military personnel are a well-known source of STDs, transmitting them in voluntary or coerced unions; and coneprn about the miIitw as defenders and occupiers and their role in the transmission of HIV is growipg. Soldiers m;ty be mobile and at least defacto unattached, but they are also relatively afflueot and unlike many compatriots mqy receive a regular cash income (whme payment is itate extortion), Milibp bases are often in rural weas 1994:1 26)- Xn Zimbabwe, like other rural growth points, comereial sex (Bassett and Mhloyi 1991: f 5 1); and in Namibia sexual networking, especially with local schoo!girls, iq spreading H N unities around the four baseg in the north (Webb 1994). +

Sociocultlsral Aspects of AIDS

17

International peaee-keping oprations present pasticular problems, though Ghana, which is involved in Rwnda, does not send HIV-positive soldiers abroad w i n s b w and Whiteside 1894:4), Senegalese f m e s get a daily pep talk about safe sex but "soldiers are young, and have a nervous system in their sex."" Regular soldiers, however, are captive audiences for safe sex educ&ion, menillas and insurgents aye not. The vulnerability of women and girls in war zones is only too clear: the use of rape as a weapon of wm whether by militia or peasan& incited by them w a ~despreadin Rwmda ( C r q 1995;A&ican Rights 1994). Batde-gounds and peacekeeping zones are obvious ""rsk situations" "wi and Cabrat f 993): southern and eastern Africa is no exception. One mstle occupational group long singled out as a "risk group" and as the transportar of the virus between ca unities and countries is lorry drivers or et al. 1994). However, tmckers do not truckers (e.g. Bwayo, Plummer, O always go casually from prostitute to prostitute: Some of the travelers and traders esbblish unoEcid f a ~ l i ealong s their route, rather like the wbzm liaisons in South Africa fomed by f&ar migants. The socia1 problems of migrant and co labor and systems me well known, espeeidly of mine labor in South Akica (see Jochelssn et al. 1991). New development pro~ectsand programs, too, may bring in workers who create a demand for commercial and casual sexuaf relationships: clients of sex workers in the Cmbia included construction workers %omSouth-Emt and Fm-Eat Asia who were the= for some months (Piekering, Todd, Dunn et al. 1992). An interesting suggestion is &at W N impact analyses should be included in planning for these (Decosas and Pedneault 1992, Moses and PIU 2993; Weiss 1993; Obbo 1993a). Traders have been heavily implicated unity in Kagera Biseict, Tanzania Visiting crop buyers were identified by t as the main extemd source of danger: they were discouraged from staying an once they had completed their purehses by measures such as shutdng down the bars and earnpensating women who relied on them for a livelihood (de Zsrlduando, Msamanga, and @hen 1989). Xn southern Zmbia urban males from neighboring countries, mainly mireans, who deal in salauk (seeand-hand clocS-zing) are scapegoated, but so too me women &&erg, especially fish-sellers who are believed to engage in promiscuous activities with fishermen so as to get the earXy fish (n/lwale and f3urnard 1992)." "ha& too, of the airborne traders in West Africa? Boeing jets Ry to all parts of Angola e q i n g a b o ~ npoliticians, diplomats, bureaucrats and the odd visiting Xeeiurer in the two front rows and a hundred earavaneers and market mammies crowded in behind hem . , . Xrt the smaller towns m k e t days me only held on the days when the plme comes in (Bidngharn 1989:s). WiXf such pilots be accused of canying a loud of death" with them just as Malatvian truekers have been blamed for the ""highway of death" weeping down into South Africa? And me there Angolan sex workers &welinground the markets, too, as there me in the Gambia (Pickering, Todd, Dunn et al. 19921, creating yet another link between communities, and urban and rural areas?

18

Anne V, Akeroyd

Not all men moving within and between countries are truckers and traders, and , cIients of Gambian prostitutes in the Medical Reseach Council labor ~ g a n t sThe project were of vasied national origins, were mobile, and were distributed across the class and occupational spectrum. About one third were from the lowest occupationd categories, about one-third sbHed workers, thirteen percent truck and taxi drivers, nine per cent fmmers and eight per cent in white collar and military occupations (Piekering, Todd, Dunn et at, l992:86), Other mobile people include expatsiate consult;ints, aid workers, pilots, journalists, tourists, businessmen, civil servanes, and others: but where are the deailed (let alone repeated) studies of those occupational categories? One neglected categoq, athletes, has recently been investigated, A study of football, basketball and volleyball teams found that all are young adults (18-4Q years). They have aff the deterxninants that favor sexual prontiscuity: they live for days weeks sometimes months away from their home; they are public stars, so they attract crowds amongst which are many predatory fernales; they travel a lot . . . they are relatively healthy and walthy so they can easily afford to have mmy sexual pmners. We were shocked by the amount of casual, hazardous, unprotected and indiserirninant sex in this Mli1ieu.l'

The prwtitioners of parficula occupations singled out as scapegoats are mainly men, their "victims" women. What are the risk fwtors, the sexual pressures and oppo&unitiesin work settings, pressures which may also pmicularly affect women? Some airean female en&epreneurs,for exampIe, nzay be engaged in long distance trade, travding to West Africa or Europe; that these businesswomen perforce may have to use sexual ploys to get favors, foreign exchange and the l i b (Schwpf 19532; MaeCaffey 19861, is evidence of a sexrtalized occupational risk. There are few published studies which pay detailed attention to occupational and class issues in respect of women: attention has been directed primarily towards ""prostitutes" oar ""sex workers," "Downmarket" "prostitution, women serving a relatively poor clientele, has been emphasizd, e.g. in Kenya (Simonsen et al. 19901, arid in the Gambia (Pickering, Todd, Bunn et al. 1992)-indeed, the small, expensive highclass prostitution sector catering to the international tourist t r d e on the Atlantic coast of the Gambia was excluded &cause it ""has little overlap with local life" (ibid: 1992:755), though it would be interesting to know how much power such wamen have in sexual exchanges compared with their poorer counterparts." The work sf Schoqf and others, however, shows how misfeading is the constant reiteradon of the image of African women as prostitutes and bmmaids creatd by epidemiologicaf studies and the media." Are ""protitutes" always marginal. women? Not invariably so. The Medical Researeh Council project in the Gambia found that though Cambian sex wrkers erne: %am low e c o n o ~ sbtus c families the Senegalese ones mostly did not. They were better educated than most Cambian women (over one-third had received at least same primary education) though those: who worked exclusively in village mmke&,often traveling in a regulw pattern k s m one to the next, tended to be older,

Sociocultural Aspects @!AIDS

19

less educatecl and more often from rural areas (Pickering, Todd, Dunn et al. 1992:82). Even if sex workers me on the fringes of the social settings in which they ply lheir trade, they have not necessaily been rejected by their families or nities of origin (though it may not alwilys be known or admitted how they earn their living). 'I'he Senegalese women in the Gmbian prr?ject made remla &ips home to visit their urban or mraf families; accompanying them, the reseatrehers observed that: s not Most enjoy4 a higher than average stmdad of living, . . .The rural f a ~ f i e were innpove~shed.Their welt-being and warm weileome far the visiting daughtm provt=d tt.z&she had not faced a dramatic:choice of prostitution or povwty (PickePing, Todd, Dunn et al. 1992:79), Bahaya women Xirom well-off and poor backgrounds have been traveling to u&an eenters thoughout East A f ~ c ato pra~ticeprostitution since at Xemt the 2930s using their earnings to build houses for themselves and kin, buying land or consumer goods, paying school: fees and repaying their bridewealth, et cetera (Gijage 1993:21)0-2131).20 Weiss sugges&(based on a smIl smple of 257 m a ~ t ahistories l in f 988-99) that about a quarter of Haya women have been involved in activities associated with selling sexual services in urban aeas (Weiss 1993:33, n.9); and those who buy land me "ppurchasing a place of burial and the memoriaEization it b ~ n g with s it" Q(ibid:30).Haya women are only one exmple of a czross-border flow of women selling sexual services: non-nationals are often heavily involvd in the commercial, sex trade in Africa (as in other regions of the world) and therefore doubly at risk of being seapegoated. Ethnic origin may be a factor agecting a woman" choice of sex work or the location in which it is practiced. The MRC Gmbian s&dy found that of 2418 wmen only 9% were Cambians: 80% were Senegalese, the rest from elsewhere in West Africa, and most were very mobile, moving sound the Senegambian region (Pickehng, Todd and Dunn 195)2:"79),A study in Ethiopia (hncan, Tibaux, Pelzer et al. 1994) found that Amhaas constituted 43% of bzgirls, 77% of prostitutes and 58% of talk (beer) sellers compmed with 26%"a,3%and 15%respectively who were Curage, m e y suggest this distribution is linked to location, the emly age at which Arnhclfa women in lower income groups m q , and that Curage widows and divorcees are more likely to become traders and merehanb, younger rurill Amhara women to become bargirls and domestic servants and older ones beer sellers and prostitutes. Although religion (Ethiopian @thodox) d g h t appear to be significantly associated with prostitution it Xsst almost ail its significance when the ethnic variable was added?" Generalizd discussions of "MDS in Afica" may not be suEciently sensitive to the differences in wornem" economic position and power within and betwmn different counlries and societies, Probably inevitably, they stress the problems of the poor and pay little rtttention to middle-elms, 6Xite and salaried women, yet HIVinfection mong &ese women may have very imporknt s&ucturalconsequences in

20

Anne V, Akeroyd

the welfwe and educational sectors and, especially in West Africa, the trading wtor, fn bsa&o, for exmple, where wmen occupy a very high proportion of the non-mnual jobs, and especially bureaucratic posts, the effects of widespread HXV infwtion mong women wuld have serious repercussions, Though ""rf;iteW women must be put at risk by their husbands>exual liaisons, their deaths have rarely been singfed out for attention (but see Obbo 19938; Schoepf 1988; and Chao, Bulterys, Musanganire et al. 1994). There are some references to "'working womenibnd women in fomal occupations are included in seroprevalence surveys, pxticulaly lFrom Zafre and the Central African Republic (e.g. Mathiot, kpage, Choaib et al, 1990; N%f;aly,Ryder, Bila et al. 6988). Although in the Mwaka District study seropositivity rates in mmen were somewhat above those for men, no gender bre&dom by occupation was provided (Nunn, Kengeya-byondo, Malarnba et al. 1984),although presumably many women would have been ""cultivators," C~t3knl y, in a 1989-1991 study in Butare area, Rwanda almost all the women were farmrs (Ckao, ffulteqs, Musangmire et al. 19943372, Table I). Relatively high household income was an irnpoflaint risk factar, but the figures given for monthly income were postulated to be the husband" sin the ease of high earners (Chao, Bufterys, Musanganire, et al. 1994:379)*" Much epidemiological reseweh involves ""eptive populations," "pen& or prostitutes attending STD clinics; but reports often provide Iittle soeiaf-structural infom&ion, other than marital status, as in Keogh, Allen, AlmedJ and Temahagili's (1994) study of the social irnpwt of HXV infmtian on women in Egali, Rwanda, Even when women are categorizexl, by their own occupation other faetors may be used to explain seroprevalence rates, A high rate among nurses in Knshszsha w;ns atgibuted by NW*, Ryder, Bila et al. (1988) to the large number of young women in that categov, though no information was given about the women ( ~ ~ 6 who % ) were not nurses, and no explanation was advanced for an even higher rate mong male manuaf mrkers, l%e possibility of various types of gender bias in these and other studies needs in~estigation.~~ Xt is thus becoming possible to put together information from scattered sources about occupational hazards and work environments, mainly for men. Too often, though, when an occupation is singld out as a risk factor there is rarely any discussion of vvhy that, should be so, Most sources are studies which mention the occupations of respondenb and gmicipants rather than investigations of particular economic sectors and organizational settings and the risks they pose or facilitate. XT turn now to a brief discussion of a pa~iculalysalient occupational context, the metdical and welfare sector,

Becapati~nalIssues iiz the Medical Seetor Medical and health workers, male and femde, are in key occupations for coping with HTVIAXDS and its associated manifes~tions,and their responses bring into play wrkrelated issues, cultural beliefs and practices, and gender issues, though they have r ~ e i v e dsurprisingly little attention. The s t ~ s of s working in hospiltnls

Socioeulruml Aspects of AIDS

21

where more than half the patients may not recover seems not to have not been researched, though there are anecdotes about burnout (cf. Barbour 1994). The burden may be exacerbated by admissions policies favoring AIDS patients, and many urban patients, too, may Look to hospitals for support when rela?vives me unrzble or unwilling to provide help (Cabral 1993:158). mere is andotat evidence &out problems for health personnel; changes in surgical praetiees (Bayley 1990), and a reluctance to perfom operations or post-moaems; and a pilot study in is investigating momlity among female nurses (Buve, Foster, Mbwili et al. 1i)94). Descriptions of the stigmizing effects of WWlAlDS on suCTerers and their f d l i e s and the diseri~natorybehaviors of neighbors, relatives, itcquilintilncesand strangers alike (e.g. Seeley, Kajura, Bachengana et al. 1993; Mcgrath, Anhah, Schurnann et al. 1993) raise questions about the impact upon medical workers (""sigma halo"") What have been the effects on recruitment of doctors and other prohssional saff and, particularly nursing, which is s major fornag seetor opportunities for women for in Mozambique, male^)?^' How have young women in e.g. Zaii.e responded to studies showing high seroprevalence rates among nurses? Has nursing come to be seen as an undesirable occupaticm, or nurses undesirable as sexual pwtners and wives? Investigation of sexual relationships between hospital staff d g h t also illurninate same epidemiological findings, For example, high rates of infection mong nurses in Kinshasha (M'Galy, Ryder, Bila et al. 1988) were ateibutd to their young age, and no linkage was made with the rates found among the higher level prolFessiona1medical s&ff and manud workers; and the reseachers did not ask questions about sex in order to make the study acceptable (N"Caly, Ryder, Bila, et al. 1988:1124), Might social network analysis have found ineahospital socio-sexual circuits were involved in the transmission of HIV? - a Birer-innurse faced sexual pressurn fiom doctors in her clinic (Schoepf 15)93).2" The brunt of eizring for the sick is cmied out by women, as cwers, nurses, midwives and health workers in hospitals and in the eo workplace-relatd feas, pmiculat-ly of contagion, has been Zimbabwe (Munodawafa, Bower and Webb 1993), Zambia (Nkowane 1993), Nigeria (Megboye 19941, Tanzania (Kohi and Honocb X 994) and elsewhere, How do the nurses now react towads patients with HIV/AXL)S"?After al1,Tanzanian nurses whose major source of knowledge is still public sources have retained the same cult-ural and religious views as the society at large" "ohi and Horroeks 1994:83). bian nurses showed how their practices reflected beliefs An eslrlier study of in causation which ran counter to the assumptions of western medicine, and that c ~ l b r amsumptiof~s l and value judgements were involvd in their attitudes towards and interstions with patien&. ""Sme snnlagonism in nurse-patient relations comes from cultural concepts of itiness," observed Schuster (2981;90). An invesdgation of midwife-patient interactions in Niamy, Niger by Jaffre and Prual (1994) ifluminirtesthe culturai contexts of swh behaviors, Technical constraints %reed midwives to breach cultural practices and social rules, such as linguistic taboos on using terms refssted to sexuality which only members of specific ""iferior castes"

22

Anne V, A k r d

can use; and medical training and scientific discourse have the effect of removing patients from their social frameworks which agected nursing hehaviors. Thus,"'moral canons are not applied any longer and patients 'lose-heir social identi~.In this process, they Yosebafso their right to be respeckd and to be taken care of"(Ja%e and Rual 1994:18712). One example of denial of righris and respect comes &om the University Teaching NospitalsTomplex in Ile-ffe, S , Nigeria. A patient was neglected by doctors, nurses and other workers when her HIV status wm confimed, and "a number of other hospital workers only came %alook at the AIDS patient"' ((Adegbaye 1994). In Zambia, Tanzania, Uganda and Malawi much home and co suprvised by nurses or midwives.% In Kgatleng Distsict, Botsw horn-based e a e of people with HN/MDS rquired Advisay Nurses who work in local ~Xinicsto add this task to their normal case load, Though the: nurses interviewed w e positive about the AIDS progarn seven out of the nine admitted to finding the work diEicult and depressing, pastiy because of the nature of MDSrelated issues, especially the n& to discuss emotions and sexual issues, and partly because of wark-related issues such as the new and demanding task of contact kacing md lack of a safe place to keep records (Buwalda, bijthoff, de Bruyn and Hogewoning 1993). Even in hospitats, however, much of the daily care is given by relatives, mainly women, In the University Teaching Hospital, Lusaka, Dmbia nurses played an impersonal role, spent little time with patients, providing only medieations and routine nursing care, whereas relatives when present did most of the nursing care sueh as bathing and feeding (Nkowane 1993). Women (average age 42 years) eomprisd 75% of 150 "helprs" botcing e r inpatien&(not d l peolple with NDS) interviewed by Foster (1983) in Monze District Wospibl, ambia, Most of them were fmmers, which had implications for maim praduetion, A nationally fmous hospital in S. Zambia which attracted AIDS patients from alX over vided a sleeping shelter and toilet facilities (though not food or firewod) for relatives, some of whom had to stay for two or Wee months. Women who had brought sick or dying relatives (mostly husbands or daughters) might Ives become the fmus of fears: People living near the hospital suggested that thaught to establish liaisons with local men in order to survive when funds ran out (Mwfe and Bernard f 992:36). Anoaer issue refat& to professional conduct is at-titudes towwds medical confidentiality and openness about HIV status. The discussisns have been ccrmplicatd by claims and counterclaims about secrwy, confidentiality and privacy in Afirican cultural systems. These matters have now begun to be discussed more widely, pmicufwly as concern has grown about discrinrination in the workplace and unity (Danziger 1994.1, and the likelihood that sick people and their kin will be stigmatimd. Because of this, and as a consequence of the development of counseIing services, confidentiality is now being urged (Lie and Biswalo 1994; Buwalda, Kruijthoff, de Bruyn and Hogewoning 1994)."

SocioculfuvalAspects of AlDS

23

Anthropologists would expect to find causal factors such as witchcraft and sorceq, spirit possession, the ancestors, luck, Cod and the like tz-dducedto explain why people have been infected and, especially, why thow who should be vulnerable (judging by their behaviors) are apparently invulnersrble. When such remons are advanced by respondents in U B P surveys, even by those who also demons~ate "co~wt"hodedge of the eans~ssionmodes for HXV, they tend to be treated as evidence of faulty knowledge, mistakes, ignorance or superstition. Is this but a public s ~ n mone , deemed appropriak far the scientificjournal? Might such views be the veq stuff of infomal accountks, gossip and personal ferns among doctors and other medical personnel? Are medicd specialists trained in scientifiwestera mdicine reluctant to pant credence ar validity to "traditional" views held by their patien&?What is the eRct of a consant flow of expatriate medical specialis&and resewchers who may well regwd such beliefs as superstition? Unbersbnding emic concepts, their bases in cultural concepts, religious doctrines and gendered discourses;, and their role in aetiology, health c a e and risk prevention, is crucial, though there are few publications relating to HXV/AIC)S (in contrast to other diseases). Traditional healers have receivd attention, mainly because of their potential preventative role (e.g. Green, Dokwe and Dupree 1995; Grmn, Jurg and Dgedge 1993;Xngstad 19901, but also because of the numbers of people who have recourse to them, often paying considerable sums for treatment and traveling long distances to seek help, But there is little about the fears, beliefs, attitudes and practices of medical staff in the formal sector: this is yet another gap in the contextual bowledge needed fully to comprehend the impact and meaning of WIIVIAIDS.

P~adoxicaEXy,even caers in Southern Zambia may be thought to present a risk unity, forced to engage in ""dngerous" bbelilaviors in order to acquire their daily wherewithal (Mwale and Burnard 1992). The focal explanation for the finding that unmamted daughters in poor househoIds in Masah District, Uganda were at risk of HXV-inkclion was that fathers appropriatrgd daughters' earnings so that to get consumer goods these women had to engage in sexual exchanges (SeeEey, Malarnba, Nunn et al. 1994). Here we have further demonssations of the significance of gender; more pmtieularfy of being female. The relative economic, personal and social vulnerability of women has been welldocumented (e.g. Romero-Daza 1994; Qbbo 2993a; Schoqf 1993, 1992, 1988; Mcgr;ath, Schumpnn, Pearson-Marks ct al, 1992; Bassett and Mhloyi 1992; Heise and Elias 2995). Its salience for the transmission of HIV is brought out by studies which situate the sexud act, personal mlations and econornie strategies in the wider context, such that ""Inking the macro-Ievei polilical s o n o m y to micro-level ethnography shows how women" survival strsltegies have turn4 into death strategies" "choepf 1992:279),

This is exemplified by Weissk (l 993) exegesis of a co onplace remark in Buhaya-""A woman , . . she thinks she" getting rich. Goodness! She's buying her pavew-which showshow sexuaiity,the spreizd of afatai diseae, economic ambitions and flortunes are inter-connected, and why women" relation to money assumes a symbolicand moral load of their imputed culpability for the spread of AIDS. Women a e still legal minors in many countries or have only recently been granted full adult status2' and the personal, swial, politic& and economic concomitants of this may be critical in understanding the impact of HXVIAIDS. meir position under customilry law is often unfavorablle; and even where they are mmied in accordance with statute law they may still have their personal property removed by a deceased husband's heirs. In socioeuftural systems where mmiage leads to the severance of natal ties or where women" Iikted con&ol over resources in cash or kind force them into breaching the norm of suppctrt and reciprocity widowhood may make a warnan's position dditionally precarious, Her chances of remarriage may be slight, especially if she has been blamd for the death, as in Uganda (Qbbo 1993a and b; Seeley, Kajura, Bachengana et al. 1993) and ZaXre (Schoqf 1982:272-274). The death of children may adversely affect her access to child labor power, and affect her future welfme. Where resources are scarce it may be girls who are kept out of school, which will affect their future economic prospects, AIDS oqhans (see Hunter 1990) may sirnilaly be disadvantaged, and again girls mr;iy be more at risk of domestic expioitation or neglect, In Kigali, Rwanda girls were less likely than boys to be in orphanages as they were useful in the house, would bring in bridewealth and could not inherit property, vvhemas boys w r e seen as more discult to educate and Iess tolerant of authority (Rwandrtn Red Cross 1992:20-21). Men of all ages may seek young girls as wives or sexual pagners to reduce their chances of infection; and there are accounts from various countries of schoolgirls being the mget of such attention, The burden of cming may fat1 more kavily on women, and they may also be fared further into dependency. The productivity and weIfae of female-headed households may suffer, especially where male labor power is necessary in some stages of the agicultural cycle or where male ~gantskeilrningsprovide vital support, In much of southern A&icsl20-S;O%of households may hitve femak-heads and a veq high groporfian of all women may live in rural meas. A womn raely holds lmd in her own ri@t; and if her relationship with the male landholder is severed her position, and perhps also of her children, is likely to be precarious. In settlement and tenancy schemes there is o-Eten no provision made for women to be enants or landholders or for the land righ&to be &ansfenedto heirs, Pro-natalism is encouraged by tenure a nmcy conditions on development and ial faming in southern Africa where settlement schemesand in small-scale c expansion often depends upon the unpaid or Xowly paid Iabor of (polygamous)wives and children. If the association found in Masaka District holds more widely then female depenclents elsewhere ~ g halso t be at @eaterrisk of infection, The different e e o n o ~ and c social conquences af male and female deaths from HXVlAIDS under these conditions have yet to be researehede2"

Sociocultural Aspects ofAIBS

25

Issues of transmission risks and of women" health in the context of AIDS should entail consideration of matters such as rape, child abuse and abortion, as well as circumcision and oaer cultural farms of violence to the body that may facilitate the ~ a n s ~ s s i of o nEIXV, but there is surprisingly little discussion afthese. The sexual abuse af women (and of street children, boys included)"' Es widespread, partly linked to cultural assumptions about relations between men and wmen and the subordinate (persona£ and often legal) status of wmen, partly to the fevel of violence in the wider society. ""Risk situdions" are omnipresent for women: fn southern A&iea in the rural =em, in townships, in shoals and universities, refugee cmps and ww zones, they are q e d and abused, These topics are not only underdiscussed and under-reseached in generd; they m rmely, if at all, included among the "risk factors" investigated by clinicians whose focus on "pramiscuity" "'paid sex"), in conjunction with their nornative model of conjugal and family relations, seems to have precluded attention to theme3' The stress laid on candams in preventing HIV transmission has produced accounts of problems such as cost, umefiability, lack of availability, feas about use, and their unpopulwity with either or bath sexes.12Men do use them; but women face considerable difficulties in insisting on their use. Cultural constraints surrounding condom promotion and use, on who may discuss sexual matters with whom and who should provide sex education, arise frequently when sexuality and AIDS prevention measures are discussed, Less ofbn mentioned are legal, cultural or customxy practices, often a legacy of colonialism, which mrty restrict women's access to contraceptives, Clinics may restrict contraception to married couples on religious andlor legal grounds or require a woman to provide evidence af her husband's permission, as was the case in Swaziland (Armstrong 1987:378-9)." Though accounts af the economic and inteversonal problems aissociated with expecting women to be responsible for men" sexual behavior are co complex and crucial issues arising from such taws and practices and the probitems they pose me o b n not adequately addressed, Recent evidence of HTV-infwtion in young women in a stable (usually married) relationship serves to emphasize this problem. fn Butme disrriet, Rwnda, 14.2% of women who had STDs within three yeas of the study had only had sexual relations in the previous five yews with a husband or regulw partner (Chao, Bulteqs, Musanganire et al. 1994: 374, fig. l). A study in an Ethiopian city found only 9% of women still m a n i d to their first husband had no serofogical evidence of STBs (Duncan, Tibaux, Pelzer et al. 1994:328). Increasingly, researchers emphasize that the onus is on men: to take responsibility for the prevendon of STD fransmission (e.g. Duncan, Tibaux, Pelzer, et al. 1994:332), or that men should regard faithfulness as a reason to boast (Vos 1994:202). Such studies confirm accounts af the powerlessness of women in conjugal and regular sexual relationships to safeguard themselves from the consequences of their partner" extra-marital relationships or other marriages in r, indeed, from risks in thir own sexual liaisons, That there are, though, problems in referring to "Africa" in this respect (as in others)" is

Anne It, Akeroyd

26

shown by the degree of control Yoruba women have over their male partners (Ombuloye, CaIdwelt, and Caldwelf 1993). Though there are many references to men% sexual behaivior, their multiple liaisons and the like, there are very few detail4 studies of the eontextuait consfsaints an male behavior, and how men, mmeulinity and male sexuality are constructed, A rme, and ixnpomnt conlribution is Shire" (1994) sefi-autobiogaphieatli account of maseulinities in Zirnbirbwe. Developments in this field would help to move the debate forward, by focusing ""on women in their social relations with men, an gender relations, and on men as gendered beings or, as Obbo (1993a) puts it: X)MLXV transmission: men are the salution"' (Akeroyd 1994b:181). Sharing the blame and the responsibility betwwn the sexes, could help redress situ&ions as in Uganda where accounts ofkn take a male perspective and where "D]n general there is widespread insensitivity to women" concerns or suffering" (Qbbo 1993a:230). Above all what is needed is the empovverment of women, The vulnerability of women and the need to improve their position (already on the international aged&as an issw in its own right) is now also seen as closely linked to the vulnerability of children to HWlAliDS (a connection made by Agican XeacJers t meeting). The s h q increase in EliN infwtions and AIDS at the 1994 OAZJ su eases in women, and heir growing burden of cming for others, has now placed them at the center of international

Cotlelusion: Towar& a New Social AgendaSigm of the Chan@ngTimes At the s m of the decade, I drew attention to the numerous and glaring gaps in our knowledge about socio-cularal and other rnatter~.~%uchreseareh an the social and behavioral aspects in Africa was detehned by the AIDS "Mark I" agenda, "Howl"s HJV transmt'ttd? W h t is the pattern ofsexual relatiionship? How can people be i~$usneed to eharzge their behavior? ",anand the newr priority areas far msearch eskblished by the Global Program on AIDS" Social and Behaviorail Resemch Unit of risk bebvtovs, explanatory models, and coping responses, These agendas reflected the interests of biomedical resewchers, epidenziologicd paradigms, and the dominance of the CPA, in setting priorities. The range of subjects investigated was accordingly limited, though political and economic factors may partly have been implicated, That social scientists too often were relegated to the role of Vataproducersbaher than W n g the lead in setting the researeh agendas also constrained howfed@ about the contemporq socio-economicand personal impacts as well as the long-term potential consequences of HIYIAIDS. There were, and still are, important issues to be considered beyond those involved in kansmission, or with edi- and short-term consequences of HEVIAID3 for those afflicted and their hmilies, dependents and associates. Another aspect with ethical and methodotogieal as well as substantive consequences was the limited range of persp~tives;generally in short supply were: indigenous and participants"

Sociocultural Aspects qf AJDS

27

perspectives, woman-centered/FerninisItlnon-sexist perspectives, hedtk care professionals"ersp~dves, and c ity-based rese~ch,and qualitrztive studies, earlier literature on Africa was of a togThe impression given by down AIDS resemch world, one in which people were resexched on ratX?er &an with, in wbich resemch was ofand about rather &an for the people being studied; and which followed ""a nmowly defxmd path which excludes Erom vision the lived exprience of most Africans" "wkmd 1989:$0).The people" voices, especially of those most affected by HIV and AIDS, were almost always silent (literaay) or silenced by science; their knowledge, perceptions, interests and concerns did not appear (or not to any great extent) to have infomed the research procedures, questions or analyses, There were exceptions, the exemplms shoVVing the difference an anthopological approach caufd make were beginning to appem, studies which took cognizance of the actors' perceptions and views, and also of issues such as s&uctur;lladjustment.,labor migration, urbm unemployment, famine and wxfae, etc. as the contexts within which HIV will. be transmit$& and must be studied. I argued in 1990 for an even broader AXDS "M& IX" agenda, for social scientists to engage in fommd, and independeint rather than reactive, thinking; to identiQ passible medium and long-term social, dennographic, economic and other consequences, m&e links with other substantive fields in their disciplines and to engage in reflective and eriticd thinEng, The situation has changed makedXy in. the first half of the 1990s. The range af approaches has widened, the increasing focus on women, the greater involvement of national researehers, the use sf a gre&r vasiety of reseweh mett.lods,especially qualitative approaches, have all added to our knowledge. Some of the results have b ~ discussed n here, in their own right or to draw attention to gaps in the assessment of the impact of HIVlAlDS upon individuals, families, co unities, and organizations, Widening further the research agenda would bring new methods, techniques and disciplines into play in Africa, as it has elsewhere; and there are signs that this is happening, This should, though, also entail attention to the concerns of nstlionat researchers and of the pwple and social uni& directly and indirectly affwted by HW/AIDS, A paper such as this may draw szttenfion to what we how, and ask "What h we kytow abclut X?" and "What else shoalcl .toe be stdying?''; but it should also ask "For wkat andfor whom are W rescnrrrehing ?" m e e p i d e ~ is e being documented: but we should still ask, 'Whose are the texts which are constructed?"

E, World Health Organization, ''The current global situation of the HIVlAIDS pandemic as of 31 December 1994," "xes 1-3 (Document located at URL: http:I/~fpawww.who,eh/aidscasdcurrent,hCm), 2. WHO, "Wlarld AIDS Day on 1 December: "AIDS md the fansily,"""ss Release WHO192,29 November 1994,

28

Anne V, Akrayd

3. WHO, "'African leaders back QAU call to save children from AIDS," Global AIBSNews, 1994, no.3, The problems of the young and the need to enable them to protect themselves against HXV-infection were recognized in the pledge by the 1994 QAU surndt meeting to address the issue of the Child in Africa, Little is known about adolescents and sexuality, and that mostly from KAP surveys. 4, "HEV infections in Africa reach a total of 10 million, says the WHO," AIDS halysis Afica 4(l):4, 5. WHO, ""Af~canleaders back OAU call to save children fmm AIDS," Global AXDSRTews, 1994, no.3.. 6. In Igbo-Ora, a rural town about 150 km from Lagos, 82% of 377 ildults had visit& ed people, had sexud Lagos within six months of the sady, and half of these, including pafiners there (Ososanya and Brieger 1994). 7, '"l%ereare references to the buntypieafitykf hospitd patients, but little infornation is available-there are studies of refenal systems, choliees of mdical treatment, type of healer etc. but not in relation to I.IXV/AIDS, Other factors include the provision of homebased care (often favord bsause of its presumd low cost to the health services) and the selectivity in insurance cover fox employees and their faRlirXlies, 8. In nnobia cemiciil cmcer with advmced tumors increasingly appemd in younger women md death often occurred in under a yeaf from diagnosis, breast cancer was more aggressive in H1V-inlFeele;dwomen, and gynecological sepsis was much more common and its outcofrme worse (Baytey f 9901, The three indicator diseases (invasive cervical cmcer, tuberculosis, and recunent pneumonia) added to the CDCk AIDS ease definition in t 993 are not hXly included in the African definitions; De Cock et al. (1993) suggest adding invasive cervical cancer in their propsed expmsion, In the USA attention to gender-related differences in EIIViMDS, women's heafth and wmenk sexelusion from medical research and drug trialis are now key issues (see keroyd 1994a); on these matters in women" health in the mird World see Qkojie (1 994) and Vlassof ( I 994). 9, Reid (1 994) shows that current discourse which uses metaphors of epicenters and fowses on core groups involves mehphors of distancing and results in blame and denial, whereas mobilization in aEectd communities is creating new discourses of inclusion, empowerment and processes which reflect the complexity of the reality of the epidemic, Sejdel (1993) identifies one set of discourses as medical, development and medico-moral discourses, md another as legal, humm ri&ts, dhicaf, and iletivist discourses or, in skoa, discourses of control or exclusion and discourses of rights and empowement. 10. 1 t&e AIDS "afflicted"" and ""aRwted"YmmBarnett and BZaikie (1992), suggests reviving the elm md m&ng it the locus of AIDS aetivity to ensure % and continuity, wguing that the elanship system" failure to respond the f ~ f y segl-bdng radondly to the menace to its m e m b ~ "s m y be aplained m r e by the neglect of interveners in their preference for recently introducd models than to a fack of potential af the system to respond"" (Ankrah l993:10). She bases this proposition on old anthropological texts; recent revisionist work suggests anthropologists imposed concepts of clans and lineage structures upon the societies they studied. X 2, mis was part of the Ndicai Resezch Council (Ufo Program on AIDS in Uganda (MRPA) Iage-scale cohort-study of nemly 10,000 pmple in l 5 rural villages with a mainIy Etagwda pcrpulation, They used a "wealth ranking" method, The criteria used for selecting household possessions are not given, and though ""no interaction was detected between gender and household item index" "eeley, Mdamba, Nunn et al. t994;82) it looks as though there mi@t have bmn a bias in favor of men" gmds (on gender diffe~ncesin wealth rimking, see Seoones 1995).

Socioculhval Aspects of AIDS

29

13. "AIDS and the workplace: Signs of hope from Zimbabwe." Global AIDSNews. 1994, no.1. summarizing Williarns and Ray (1993). 14. What might be the impact on self-help burial societies, like those in Kgatleng District, Botswana (Brown 1982)? Those societies, mostly formed during the 1970s in response to the adoption of burial in coffins in cemeteries, paid expenses for spouses (at least 90% of members were women) and children of members, and on the death of a member recruited one of the persons covered by that member, usually a daughter to take her or her place. 15. Colonel M'Boup (quoted in Winsbury and Whiteside 19944) in a session on the military at the 8th AIDS in Africa Conference, Marrakech. December 1993. 16. On the salaula trade see Hansen (1994). 17. Quoted by Winsbury and Whiteside (19948) from a poster presentation, "AIDS and Athletes: A Forgotten Group with Risky Behavior," at the 8th AIDS in Africa Conference. Popular musicians, too, have been overlooked. despite their similar lifestyle and the death from AIDS of stars such as the Ugandan, Philly Lutaaya 18. Though some of the finer differences in behaviors and risks for the women are not given (such as those found elsewhere between street prostitutes, brothel workers and callgirls), this study shows what can be learnt through qualitative research in its descriptions of the links between leisure facilities (bars, dancing, restaurants), other illegal activities (gambling, drug dealing). and the sexual relations between sex workers and other people in these venues. 19. Anthropologists and feminist researchers stress that terms like "prostitute" and "promiscuous" are frequently culturally inappropriate, inaccurate and often offensive (de Zalduondo 1991; Schoepf. 1988. 1992; Standing and Kisekka, 1990). Standing (1992) shows the need to differentiate non-maritallmarit~extra-maritall~~mmercial sexual exchanges and to understand them in relation to each other and as part of the exchange spectrum, and argues that only the acquisition of cultural and social knowledge enables the researcher into sexual behavior to formulate "meaningful and sensitive questions." 20. Kaijage (1993) is a rare example of a historically based study; interestingly, he shows continuities in the official responses to STDs. 21. They say a larger study of similar numbers of women in their own cultural environments would be needed to confirm or refute this finding. Given the common association of ethnic group and geographical areas with religious affiliations in sub-Saharan Africa, this association might well hold elsewhere. 22. Apart from problems of estimating cash income in a farming community, the skeptical anthropologist wonders how much the women knew about their husbands' income. Other important risk factors included young age at first pregnancy, low gravidity, cigarette smoking, and history of oral contraceptive use, as well as STDs and multiple sexual partners. This study produced a new and disturbing finding, that male circumcision is a risk factor for women, contrary to the more common conclusion that circumcision appears to have a protective effect (Bwayo, Plummer, Omari, et al. 1994; Hunter, Maggwa, Mati et al. 1994). 23. For the impact which a gender aware analysis can make on program planning see du Guerny and Sjbberg (1993). 24. Danziger (1994909) refers to anecdotal evidence that skilled health workers are moving into the better financed AIDS sector, but does not say where. 25. A pediatric nurse who died recently in Yaounde recorded in her diary the names of over 300 men who had been her lovers since 1982, including doctors in the University Teaching Hospital. important Ministry of Health officials, directors of state corporations. Source: "Beauty who contaminated 300 lovers," New African, February 1994, no.315, p.22.

30

Anne V , Akeroyd

26. News: ""Africa: Nursing is on the Agenda of AIDS Conference," International Nursing Review, JulylAug,19I)O,37{4),no.292, p.291, 27, mere is conwm &out the problems that lack of confidentidityabout HIV-infwtion may pose for women, whose position in many communities is pr~afious.Whether confidentiality can be kept may be a probitem: A distinctive vehicle used by a counseling or home-based care service, for example, will reveal the situation to relatives and neighbors. 28. Trditional healers in a focus group study in Zimbabwe c l a i d that until the 1950s young men md womn obey& the taboo on pre-maritail sex, and that the chmge in behavior was the result of ducation and the kgali Age of Majority Act (Vos 1994:197)! That Act, enact4 in 1982, also rnrrde womn legal majors, alttrough in many r e s p t s they are still. not able to exercise full rights. 29. Analogous issues can be found in Barnett and Blaikie (1992) who researched the ng system in Uganda but they were not concerned with this type of tenure. For an overview of problems facing women f m e r s see Akeroyd (1991). 30, Strwt children are open to eeonodr: and sexual. exploitation in Afdca as elsewhere. Numbers have soar& in Zimbabwe, many are believed to be WXV-infected, and a social worker has elajrnd that y girls from broken homes end up in the: city's brothels where the market for young children is inereming as clients become more worried about AXDS" (McXvor 1994). In Ugmda ""AXDSovhmsw"hvebeeome strwt children in their cornunities or nearby towns and survive by ptty crime and food the% (Hunter 1990; also Danziger l 994:911-912). 3 1. I discuss these issues in Meroyd f 1994~).See also Heise, Raikes, Watts and Zwi, (l 9941, Raikes (1989) azld Standing (1992). 32. See, for example, Heise and Eltias 1995; Nabaitu, Bachengana and Seeaey 1994; Rornero-Dm 1994; Obbo 1993a; Schaepf 1988, 1993; MeGrath, Schumann, PearsonNaks et d. 1992; Mwde md Bumard 1992; Bassett and Mhloyi 1991;KiseBa 1990. For an anal ork of sexudity and powr relations ser: Dixon-Mueller 1993, 33, (1987) discusses the problems which minority status and the interaction ktwmn and confounding of custornav and common law create for Swazi women" aaeess to contraception, aboaion, sterilization and health care, 34, See similar coments in Seeley, Kajura, Bachengana et al. (1993) on the ""African fadly.*' 35, Among the policy principles set out by the European union in its new approach to MXVIMDS is ""gender wnsitivity md speeificity,""whichrefers i~~zter alia to the need for the political and econornjc empowement of women and their leg& protection (Dellieour and Frmsen 1994:3). 36, In the first version of this paper (same of which is ineovoratd here), given at the Conference on ""AIDS in A f ~ c aand the G ~ b b e mThe : Documentation of m EpidedcSp' o r g m i d by the Instibte of Africm Studies and the NXV Center, Columbia Universie, New York, November 5, 1990, $'

PART TWO

Case Studies

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AIDS in the nican Republic: Anthropological Reflections on the Social Nature of Disease John Kreniske

The AIDS epidernic ha been with us since the early 1980s, creeping and somerims racing, outwad from its initial epicenters in America, Europe and Africa. It has displayed an unprecedented ability to shafpen our facus on the most basic realities of culture, class, polities and economics. AIDS has riveted our attention on the fact &at &ere is only one World, Its rich md poor quadrants shade imperceptibly into one another. What hurls one earner of the Wodd ripples outwad to the rest. Despite the fact AIDS is a global problem, it is q p a e n t the burden of the epidemic is not evenly distributed and this baXmce is increasingly to the disfavor of the poorer, develaping nations, It is now estimated that over 700,WO cases of AIDS have occumd in o v a one hundred and fifty countries, By the turn of the ~entuq,there will be five &I six ~ l l i o n cmes. CmenrXy, it is thought that there are a( least eight million people c m i n g the vims worldvJide and this number is expected to rise to fifteen to eighteen million by the year 2000.' In the developed, iindustrialiizd world, the miacjority of infections me still among men; in the er of AIDS is hiling with greatest force on women. developing world the h Two and a half million women, 80% of the global total of infected women, are to be found in sub-Saihmm Aeica. Finally, while MDS itself exae& a terrible toll, the number of infections xeompanying AIDS is a factor to contend with, By the yellr 2010, it is believd that 80% to 90% of all infections will be in developing counfries (WHO, June 1990). If we in the developed world me to aid in the control of the

34

John Kre~isEcR

e p i d e ~ in c developing counhes, it is nKessary that we have some perspwtive on the vvay in which the developed and developing worlds have responded to AIDS as well as the conditions in developing countries which modify the course of the epidemic and elicit a socio-medical response. When the syndrome burst upon the consciousness of the world in 1980 in San Francisco and New York, the initial response, though riddled with confusion and anxiety, was consistent with the main features characteristic of industrialized, technologically advanced, nations, The significant features of the epidemic were rapidly delineat& and simultaneously a powe*l p r o p m of r e ~ a s c hinto the basic nature of the causal agent was begun. The cultural-scientific bias of Western civilization mandated that the response to this new threat would be rapid and technological. ft is ROW appasent the prospat of a quick ""tcehnological fix" kom basic science will not materialize, Despite outstanding medical and scientific successes neither prevention nor cure have been achieved; nor will they be soon enough to forestall an international calamity of historic dimensitms. Moreover, as significant as the response of West.ern science and technology has been, the response in the area of policy and behavioral interventions has been rudderless and feeble (O'Malley 1989). This, too, is consistent with the major features of Western cultures and societies, which, in general, find the natural world more responsive to study and contraf than the social, In the ""developing world," the experience has, from the first, been digerent. In those countries of the developing world in which AIDS first appenred, it did not re~eivethe iate prodnence it assumed in the Unitc3;dStates and Europ. AIDS took its pla ng the many deadly epidemic diseases already present, AIDS has yet to displace dianhea, for example, as a major cause of death. In addition to occuning in environments already stressed by high rates of disease, AIDS is advancing in many societies which for two decades have been in economic decline. These declining social and econornic conditions in the developing nations have done much to shape the pattern of the epidemic and the chasacter of the response. In this world, to create or implement a technologieat.response is impossible. Despite the grim picture presented by devejoping nations with respect to AIDS and infmtiousdisease, there may be a hophX pwadox ernerging in which the leading industrial nations might find the most effective examples of the ways in which to combat HW infection. In order to examine this possibility, the Dominican Republic will serve as an example of a developing nation confranrcingthe menace of MDS with few resources other than a clear wiH to stop the silent destru~tionof the epidemic. In its widespread anding poveay, hunger and disease, the D a ~ n i c a nRepublic n with other countries of the developing world where MDS has &eady appemed with epidernie force. The dominant features in the consciousness of the people of the Dominican Republic, even as they become aware of the new disease in their midst, are the economic and social realties which antedate AIDS. This chapter will discuss the impact and progress of the epidemic at two levels, I will first detail some of the significant features of life in the Dominican Republic

AIDS in the Llrrnrinican Republic

35

which fom the criticd conkxt of the AIDS epidemic. I will then discuss the special circuxnstances of the sugar worker" camps in the plantations, the bateyes, of the Republic. Lastly, I will present an overview of the Dominican response, with some suggestions for the future,

Part One: The Soda1 Context of H N Wectioa in, the Dodnican Republie In the social study of health and illness, it is fundmental to understand that disease and illness me not random phenomena, Each society by its organization and c produces certain chwacteristie patterns of disease and death core e c o n o ~ features which are specific to it. The load of disease born by each society is, therefore, one indicator of the palitical economy and social life of that society, Disease, then, is, in large part, a social event expressing the central realities of tbe society in which it occurs, In what foflows, we select several ifSpe