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AIDS, the "other plague": a history of AIDS prevention education in Vancouver, 1983-1994 Marjoribanks , Bruce 1996

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AIDS, THE "OTHER PLAGUE": A HISTORY OF AIDS PREVENTION EDUCATION IN VANCOUVER, 1983-1994 by BRUCE MARJORIBANKS B.A., Simon Fraser University, 1990 Dip.Ed., The University of B r i t i s h Columbia, 1993 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES Department of Educational Studies We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA November 1995 °Bruce Marjoribanks, 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Columbia Vancouver, Canada Date ^OuCU&tfl 30, WfrT DE-6 (2/88) ABSTRACT 11 This study describes how AIDS prevention education programs were constructed, delivered, and implemented i n Vancouver between 1983 and 1994. Biodeterministic models of disease are examined through a h i s t o r i c a l analysis of documents that include newsletters, minutes of board meetings, p o l i c y reviews, annual reports, and personal journals. This study assumes that AIDS i s as much a socio- c u l t u r a l phenomenon as i t i s b i o l o g i c a l . The findings suggest that present educational guidelines f o r AIDS prevention are unable to i d e n t i f y what messages should be communicated and f a i l to i d e n t i f y to whom they should be conveyed. This study does not recommend the use of biodeterministic models of AIDS prevention education which r e f l e c t plague metaphors. Instead, c u l t u r a l l y relevant strategies need to be developed throughout a l l aspects of AIDS prevention c u r r i c u l a . I l l TABLE OF CONTENTS Abstract i i Table of Contents i i i Acknowledgement v Chapter One: Introduction and Overview 1 Introduction to the Problem 1 AIDS: The "Other" Plague? 2 Methodological Basis of the Study 6 Overview 7 Chapter Two: Review of the Literature 9 Constructs of Disease .. 9 The Changing Conceptions of Plague and AIDS as the "Other" Plague 10 History of Plagues 11 History of AIDS 12 AIDS Metaphors 14 Other Responses to AIDS 15 Changing Meanings i n Disease... 16 Models of Disease Control 17 People's Lives i n the Age of AIDS 19 New Practices i n Gay Communities 20 AIDS Prevention Programs 21 Typology of AIDS Prevention Education Programs 25 AIDS Policy i n Canada 28 Summary 30 Chapter Three: A Rationale For Discourse Analysis 33 De f i n i t i o n of Discourse 33 H i s t o r i c a l Methods 36 Narrative Analysis 39 Poststructural ism 40 Data and Data Analysis 41 Summary 47 Chapter Four: History of AIDS Prevention Education i n Vancouver, 1983-1994 49 The F i r s t Era, 1983-1987: New Beginnings — 50 The Second Era, 1987-1992: Local I n i t i a t i v e s 60 The Third Era, 1992-1994:Towards More Comprehensive Programs.... 79 i v Chapter Five: Discussion...... 86 AIDS i n Context 86 AIDS as Discourse 89 Homophobia 96 Homphobia and System Maintaining Ideologies 98 Blaming the Victim(s) 100 Shamming the Victim(s) and "Victims" Shamming Back 101 Summary 104 Chapter Six: Conclusions, Implications, and Recommendations 105 Conclusions 105 Implications. 109 Recommendations 112 References 118 Appendix I 130 ACKNOWLEDGEMENTS V I would l i k e to thank to my advisor, Professor L e s l i e Roman, for her c r i t i c a l comments and emotional support during the l a s t year. I would also l i k e to thank, Professors Jean Barman and N e i l Sutherland, for t h e i r guidance and i n helping me, understand the practice of h i s t o r y . Two others need to be acknowledged, Professor LeRoi Daniels, who functioned as a c r i t i c a l reader and Professor Murray E l l i o t t , who eagerly chaired my defense. I would also l i k e to acknowledge the members of the " u n o f f i c i a l committee," Sharilyn C a l l i o u , J . Karen Reynolds, P h i l Mondor, and Garnet McPhee for t h e i r feedback and h e l p f u l discussions. Most of a l l , I acknowledge William Gould and the l a t e Dr. Christopher G i l l for t h e i r encouragement and unwavering support during the course of the study. This thesis i s my t r i b u t e to the memories of many friends, colleagues, and neighbours whose ghastly deaths leave ghostly memories and ravaged communities. I write so t h e i r voices w i l l be heard and legitimated. ) 1 CHAPTER ONE: INTRODUCTION AND OVERVIEW Introduction to the Problem: In s p i t e of ten years of community-based and p r o v i n c i a l educational attempts to prevent the spread of AIDS, HIV rates i n B r i t i s h Columbia are increasing. The rate of increase has decreased when compared to the rates of increase of the 1980s. (Rekart & Roy, 1993). The term "HIV rates" r e f e r s to the number of people that t e s t p o s i t i v e to the v i r u s that causes AIDS. B r i t i s h Columbia (and Vancouver by implication) also has had and continues to have the highest per capita incidence rate of HIV i n the country. Recent monitoring indicates that over ninety percent of the new diagnoses of HIV i n f e c t i o n are between the ages of eighteen and twenty-five years old (Rekart & Roy, 1993; Brown, 1995). Women also have been increasingly diagnosed with HIV i n the province. These trends indicate a problem, namely that r a t i o n a l educational approaches to AIDS education are not followed. The educational guidelines are unable to suggest what kinds of messages should be used and f a i l to i d e n t i f y to whom they should be directed. Perhaps, the lack of guidance should remind us that what and whose messages have been heard and read are neither useful nor s u f f i c i e n t any more. Many studies have examined the AIDS epidemic, but they constitute an a h i s t o r i c a l account of the epidemic, lacking serious attention to the h i s t o r i c a l dimensions of the problem. In pa r t i c u l a r , the recent h i s t o r y of AIDS prevention education 2 i s absent from the account of hist o r y of epidemiology (Fee & Fox, 1988; Mann, 1992a). Conceived as a discourse analysis i n a h i s t o r i c a l context, t h i s study explores and analyzes one example of AIDS prevention education. S p e c i f i c a l l y , the study looks at AIDS prevention education programs i n Vancouver between 1983 and 1994 to attempt to explain how educators have constructed, delivered, and implemented the programs. Vancouver i s a useful research s i t e because the f i r s t Canadian AIDS community group was formed here by a small group of doctors. AIDS Vancouver offered a number of c r u c i a l services i n counselling and public education at a time when no one else was equipped to deal with AIDS. The organization's AIDS pedagogy was based on the premise that people should avoid engaging i n behaviours that spread HIV. This message was conveyed through a va r i e t y of programs which included safe sex parties, the Man-to-Man program, condom and l i t e r a t u r e d i s t r i b u t i o n s , and a metropolitan h o t l i n e . In addition, the p r o v i n c i a l government d i s t r i b u t e d a pamphlet to a l l B r i t i s h Columbian households i n the f a l l of 1987, and established a t o l l - f r e e AIDS information. The Ministry of Education developed an optional Family L i f e program that addressed AIDS for grades 7 through 11. AIDS: The Other Plague? Human Immunodeficiency Virus (HIV) was formerly known as human T - c e l l lymphotrophic v i r u s - I l l or HTLV-III, lymphadenopathy associated v i r u s or LAV, AIDS associated 3 v i r u s (ARV), immunodeficiency-associated v i r u s or IDAV, severe combined immunodeficiency or SCID, and also, gay rel a t e d immune deficiency v i r u s or GRID. In March 1987, to eliminate the m u l t i p l i c i t y of names i n use, the American Center f o r Disease Control (CDC) i n Atlanta, Georgia developed a d e f i n i t i o n to describe the epidemic of immunosuppression f i r s t seen i n the US i n the early 1980s among gay and bisexual men and intravenous drug users. The d e f i n i t i o n became AIDS (Acquired Immune Deficiency Syndrome). Although i t i s believed that HIV i s the necessary agent for the compromise of the immune system which r e s u l t s i n AIDS, many manifestations are associated with AIDS (Gould, 1990; Fauci, 1991). Persons with AIDS (PWAs) have one or more severe opportunistic infections or malignancies such as Pneumocystis c a r i n i i pneumonia (PCP) and Kaposi's Sarcoma (KS), and, although changing due to therapeutic advances, the vast majority of people with AIDS die within two years of diagnosis (Fauci, 1991; Brown, 1995). As much as HIV i s part of the complex problem of AIDS, so i s i t s transmission. The spread of HIV i n f e c t i o n and AIDS i s the r e s u l t of human behaviour enacted i n s o c i a l and private contexts; i t i s as much a s o c i o - c u l t u r a l phenomenon as i t i s b i o l o g i c a l (Sontag, 1988; Fee, 1992). AIDS prevention education programs have r e l i e d on s i m p l i s t i c biodeterministic models of disease transmission and progression (Gould, 1990; Mann,1992a, 1992b; Fee, 1992). 4 As well, many researchers, using survey methods, have found there i s a ghostly yet deafening silence about AIDS i n the discourses of young adults today (Humm & Kunreuther, 1992; Prieur, 1990). Young people who do have accurate information about AIDS, f i n d i t awkward and daunting as do many adults to bring up subjects such as AIDS and safer sex with t h e i r sexual or drug-using partners. Most have decided to take t h e i r chances rather than r a i s e such uncomfortable and unromantic topics as past sexual experiences and personal p o t e n t i a l f o r having contracted HIV (O'Malley, 1989; Kurdek & Siesky, 1990). The image of AIDS as a gay disease has also allowed young adults to f e e l erroneously invulnerable to HIV. Young men who engage i n unprotected sex with other males do not see themselves at r i s k because they do not consciously or p u b l i c l y i d e n t i f y as gay. Gay men's bodies have also been used as markers for death across the media which has contributed to denial among high r i s k groups and led to d i s a s s o c i a t i o n from the disease (Navarre, 1988; Wateny, 1987, 1988; Crimp, 1992). Altman (1988) has stated that the " d i s t i n c t i o n between behaviour and i d e n t i t y , which often seems academic, i s i n fa c t v i t a l to an understanding of AIDS" (p.301). Because the media and the public generally do not make these d i s t i n c t i o n s , gay and AIDS have become conflated, so that public perception of homosexuality becomes l a r g e l y indistinguishable from i t s perceptions of AIDS. In addition, Crimp (1992) notes that: 5 the privacy of people portrayed i s both b r u t a l l y invaded and b r u t a l l y maintained. Invaded, i n the obvious sense that these people's d i f f i c u l t personal circumstances, most private thoughts, and emotions have been exploited for public spectacle. But at the same time, maintained. The portrayal of these people's personal circumstances never includes an a r t i c u l a t i o n of the public dimension of the c r i s i s , the s o c i a l conditions that made AIDS a c r i s i s and continue to perpetuate i t as a c r i s i s , (p.120) People with AIDS are kept safely within the boundaries of t h e i r private tragedies. The most powerful reason for t h i s study i s not j u s t to provide a framework to examine how AIDS prevention education has been constructed, delivered, and implemented, but to determine the status of public discourses about AIDS prevention education i n Vancouver. The study reveals that, despite governmental, public and private media and educational attempts to inform the public, the larger public s t i l l misunderstands AIDS, as a disease or an i l l n e s s . This has not changed since AIDS emerged as a p u b l i c l y recognized disease i n the early 1980s by the GDC. In an unwitting consensus, o f f i c i a l s from government, medical, the media, and volunteer organizations a l i k e have contributed to the early public misunderstanding, r e s u l t i n g i n the equation of s p e c i f i c marginal groups with AIDS; for example, gays, lesbians, and intravenous drug-users (Gould, 1990). See Appendix I. Despite the fact that marginal groups previously associated with the disease are no longer c l a s s i f i e d as the only groups at r i s k for getting and transmitting the 6 disease, they are nonetheless s t i l l stigmatized by the l i n g e r i n g and entrenched e f f e c t s of the p r i o r misunderstanding, namely the equation of these marginal groups with AIDS and death. In other words, fo r the most part, t h i s equation has translated into AIDS = Gays, Lesbians, IV-drug users, as well as AIDS = Death. Methodological Basis of the Study A text or a discourse, i n p o s t s t r u c t u r a l i s t terms, i s not an object or a thing, but an occasion f o r the interplay of multiple codes and perspectives (Foucault, 1977). One must seek to extract and examine the operations or means by which meaning i s conveyed. Thus, a p o s t s t r u c t u r a l i s t mode of discourse analysis aims to describe the surface linkage between power, knowledge, i n s t i t u t i o n s , i n t e l l e c t u a l s , the control of populations., and the modern state as they regulate the objects/subjects of knowledge and thought. (Foucault, 1977). Through t h i s approach, I aim not to trace causal influences among AIDS prevention education programs i n Vancouver between 1983-1994. Nor do I adhere to s t r i c t h i s t o r i c a l p r i n c i p l e s . However, the findings of the study may change e x i s t i n g interpretations of the h i s t o r y of AIDS. I show i n t h i s study how events led to the construction, delivery, and implementation of AIDS prevention education programs i n Vancouver between 1983 and 1994. Such h i s t o r i c a l records as AIDS Vancouver's p o l i c y documents and newsletters were u t i l i z e d i n t h i s study. 7 These discourses represent important s i t e s of public discourse around AIDS prevention education. The study also has data from personal journals of those that have been involved i n the development of AIDS prevention education. These documents represent a discourse f o r the development, implementation, and evaluation of curriculum and i n s t r u c t i o n i n the community around AIDS prevention education. Overview In the next chapter, I explore various discourses about the s o c i a l construction of disease. I also discuss several studies about the hist o r y of disease and AIDS i n c u l t u r a l , s o c i a l , economic, and p o l i t i c a l contexts. I conclude the chapter by o u t l i n i n g the development of AIDS p o l i c y i n Canada. In Chapter Three, I define "discourse" and outline various approaches to h i s t o r i c a l inquiry and discourse analysis. The approaches are based on poststructural c r i t i q u e s of research made by various s o c i a l s c i e n t i s t s . I o f f e r a methodology based upon the foregoing approaches and concerns. As well, I discuss the data sources. In Chapter Four, I outline the AIDS Vancouver's prevention education between 1983 and 1994. I explain the major assumptions underlying the construction, delivery, and implementation of the AIDS prevention education programs. I also contextualize the data v i s a v i s AIDS p o l i c y i n B r i t i s h Columbia and AIDS awareness programs i n the province. 8 In the f i f t h chapter, I discuss the findings of the study. The discussion i s informed by the ideas presented e a r l i e r i n t h i s study. F i n a l l y i n Chapter Six, I o f f e r some conclusions based on the findings of t h i s study. I also discuss i t s implications and the need for further research into AIDS prevention education. I conclude the chapter by making recommendations with regards to p o l i c y development and implementation. 9 CHAPTER TWO: REVIEW OF THE LITERATURE In t h i s chapter, I examine the s o c i a l and b i o l o g i c a l constructs of disease. Several studies concerning the h i s t o r y of disease and AIDS i n c u l t u r a l , s o c i a l , economic, and p o l i t i c a l contexts are reviewed. I conclude the chapter by o u t l i n i n g the development of AIDS p o l i c y i n Canada. By doing so, I i d e n t i f y several implications f o r AIDS prevention education as well as provide context f o r the subsequent analysis. Constructs of Disease The aspects of disease that we c a l l " s o c i a l and b i o l o g i c a l " are parts of a single s o c i a l r e a l i t y i n which disease i s produced, experienced, and reproduced, and i n which the c u l t u r a l meanings of the experience are defined, acted upon, and struggled over (Sontag, 1988). Disputes over the meaning of AIDS have demonstrated that, i n the l a t e twentieth century, people s t i l l f i n d i t d i f f i c u l t to separate s c i e n t i f i c knowledge of disease transmission from moral judgments about behaviour. This f i t s with the dominant ideology of the day, which tends to i n d i v i d u a l i z e most disease states as a consequence of personal behaviour (Fee, 1992) . Sexual behaviour i s one of the most sharply contested p o l i t i c a l issues i n the realm of values, morality, and what was once known as private l i f e (Altman, 1988). Sexually transmitted diseases make private behaviour s t r i k i n g l y p u b l ic and therefore a legitimate subject f o r o f f i c i a l discourse (Fee, 1992). Different forms of discourse t r y to occupy the ground of p u b l i c authority: theological 10 statements were dominant throughout most of the nineteenth century, while biomedical and s c i e n t i f i c statements have strongly contested theological authority i n the twentieth century (Fee, 1993). A l l such forms of discourse have included statements and assumptions about s o c i a l l y desirable sexual practices. For example, marriage implies monogamy. The process of defining and redefining our understanding of disease usually involves a struggle between d i f f e r e n t groups who have a stake i n the c u l t u r a l construction of r e a l i t y , and through i t , the creation of public p o l i c y (Sontag, 1988; Patton, 1990; Fee, 1992). Given a p l u r a l i t y of possible ways to construct the discourse of a p a r t i c u l a r disease, many groups may be vying for the authority to define a s p e c i f i c r e a l i t y . I m p l i c i t i n the subsequent discussion i s the notion of AIDS as plague. The Changing Conceptions of Plague and AIDS as the Other Plague An early construction of disease i s the notion of plague. Sontag (1988) states, "plague i s the p r i n c i p a l metaphor by which the AIDS epidemic i s understood" (p. 44). The word plague derives from the Latin "plaga" (stroke, wound, blow) and has been the predominant metaphor f o r c o l l e c t i v e calamity, e v i l , and pestilence. I f a disease reached the proportion of an epidemic and i f i t s name was infused with "plague," i t became a general name for many frightening diseases that were not "plague," but plague- l i k e . Analogous metaphors for plague as a synonym for 11 epidemic "can also be found i n the l i t e r a t u r e of cholera, yellow fever, leprosy, and s y p h i l i s , and now AIDS" (p. 47). The more "disgusting, disempowering, disgracing" (Sontag, 1988) the disease and the more connected to unacceptable and s i n f u l behaviours of the victim, the more l i k e l y the disease perceived was be to a "plague." Plague holds both e x p l i c i t and i m p l i c i t notions about i l l n e s s and well-being, good and e v i l . History of Plagues The concept of plague has not changed much since ancient and B i b l i c a l times ( L i l i e n f e l d & L i l i e n f l e d , 1980, Rosenberg, 1988; Risse, 1988; Gould, 1990). Before the nineteenth century, epidemic diseases did not have in d i v i d u a l i d e n t i t i e s , and record keeping was minimal at best. The words "epidemic" and "plague" were often used synonymously (Rosenberg, 1988; Gould, 1990). An "epidemic," a word derived from the Greeks to mean "among the people," i s b a s i c a l l y defined as an infectious disease which spreads r a p i d l y and whose cause i s not necessarily known. The term "epidemic" i s more often a medical term, while "plague" i s not ( L i l i e n f e l d & L i l i e n f e l d , 1980). Plague, although medically defined as more than bubonic (Yersinia p e s t i s ) , can be l i t e r a l l y used to describe any calamity, as well as epidemic diseases. Likewise, i t can be said to share s o c i o l o g i c a l and r e l i g i o u s s i g n i f i c a n c e . A plague, rather than an incidence of the plague, i s an epidemic, but an epidemic i s not necessarily a plague. As Sontag states: " i t i s usually epidemics that are thought of as plagues and 12 these mass incidences of i l l n e s s are understood as i n f l i c t e d , not j u s t endured" (Sontag, 1988, p. 45). I l l n e s s as punishment i s the oldest idea of what causes i l l n e s s . Although Hippocrates wrote that the "wrath of God" could not be held as the cause of plagues, i l l n e s s e s have been interpreted by some people as punishments or r e t r i b u t i o n s f o r having transgressed sacred b e l i e f s ( L i l i e n f l e d & L i l i e n f e l d , 1980). Just as i n d i v i d u a l s , responsible f o r t h e i r "bad" actions, s u f f e r f o r t h e i r actions by being punished with injury, d i s a b i l i t y or death; so could masses of people suff e r huge calamities. Thus, the idea of AIDS may be more meaningful to the degree that i t indicates "shame" as well as blame. History of AIDS In general, h i s t o r i c a l studies show that AIDS has gone through three d i s t i n c t phases. According to Jonathan Mann (1992), the h i s t o r y of AIDS i s d i v i s i b l e into three discursive periods: silence, i n i t i a l discovery, and mobilization. The period of silence started during the mid- 1970s, when HIV f i r s t appeared and began to spread. As the events of HIV i n f e c t i o n and transmission are s i l e n t , and the c l i n i c a l manifestations of infections did not become apparent f o r months or years l a t e r , many in d i v i d u a l s remained ignorant of the new epidemic. From the mid-1970s u n t i l 1981, when the disease AIDS was f i r s t recognized, HIV spread s i l e n t l y and unnoticed to f i v e continents; at l e a s t 100,000 people became infected. 13 The reeognition of AIDS i n the United States i n 1981 ended the period of ghostly silence and inaugurated the period of i n i t i a l discovery, 1981-1985. During t h i s time, the causative v i r u s , HIV, was discovered, i t s modes of transmission were i d e n t i f i e d , and t e s t s were developed to detect HIV i n f e c t i o n . Studies using t h i s information and technology produced three v i t a l facts about the epidemic (Mann, 1992a). During the period, 1981 to 1985, many more people were HIV infected than had AIDS ( i . e . AIDS i s the t i p of the iceberg of HIV i n f e c t i o n ) . Second, the time between HIV i n f e c t i o n and development of the disease i s measured i n months, usually i n years and perhaps i n decades. Third, studies during the mid-1980s showed that HIV i n f e c t i o n was t r u l y epidemic, a f f e c t i n g , although not uniformly, a l l regions of the world. However, t h i s period involved much more than biomedical discovery; substantial research was also directed at the i n d i v i d u a l and s o c i a l dimensions of HIV-related r i s k and behaviour. In the s o c i a l sciences HIV/AIDS^related questions and concerns focused attention on the l i m i t s of our knowledge about human behaviour. Around the world, those seeking to learn about HIV/AIDS-related behaviours by b u i l d i n g upon knowledge of sexuality and s e l f - i n j e c t i n g drug behaviour found that l i t t l e r e l i a b l e or useful information was a v a i l a b l e on these subjects (Mann, 1992a). In addition, the s o c i a l dimensions of HIV/AIDS became a major challenge, as s o c i a l s c i e n t i s t s witnessed the emergence of discrimination, stigmatization, and other forms of HIV- 14 related prejudice, hysteria, and i n d i v i d u a l or c o l l e c t i v e forms of witch-hunting (Mann, 1992a). The t h i r d phase i n the history of AIDS started i n the mid-1980s when many communities and nations developed l o c a l and national AIDS prevention programs. In general, the programs have the following key elements: information content, message and materials development, perceptions of HIV/AIDS, audiences, attitudes towards sexuality, i n s t i t u t i o n a l networks, linkage with health and s o c i a l services, p o l i t i c a l and s o c i a l leadership, assessment capacity, i n s t i t u t i o n a l base, s t r a t e g i c c a p a b i l i t y (Mann, 1992a). Problems are present i n some of these elements. AIDS Metaphors Although AIDS may be plague-like, to say that AIDS i s a plague i s a statement of li m i t e d medical s i m i l a r i t i e s . A plague i s a disease with a very high and rapid incidence of mortality and/or morbidity a f t e r exposure. I t can disseminate r a p i d l y through a population and i s most often contagious and spread by casual contact ( L i l i e n f e l d & L i l i e n f e l d , 1980). During the Bubonic plague, people d i d not know that f l e a s on rats were spreading the i n f e c t i o u s agent. The medical knowledge of AIDS, today, reveals none of these c h a r a c t e r i s t i c s . However, i t i s an acute, i n f e c t i o u s , progressive, chronic, and absolutely l e t h a l v i r u s . The plague metaphor of AIDS i n v i t e s the idea that AIDS i s contagious. Combining with the fear of death and the unknown and other metaphors such as " s i n " and "enemy," AIDS may be understood, as Sontag suggests, as "premodern" (p. 4 6 ) . 15 AIDS "revives the archaic idea of a tainted community that i l l n e s s has judged" (p. 46). The most s i g n i f i c a n t impact of the AIDS/death/plague metaphor i s i t s connection to fear, e s p e c i a l l y homophobia and i t s r e l a t i o n s h i p to the disease. J e f f r e y Weeks (1986), a philosopher, writes: The mechanisms of a moral panic are well known: the d e f i n i t i o n of a threat i n a p a r t i c u l a r event; the stereotyping of the main characters i n the mass media as p a r t i c u l a r species of monsters (the pro s t i t u t e as ' f a l l e n woman,' the paedophile as ' c h i l d molester'); a s p i r a l l i n g escalation of the perceived threat, leading to the taking up of abs o l u t i s t positions and the manning of the moral barricades; the emergence of an imaginary solution - i n tougher laws, moral i s o l a t i o n , a symbolic court action; followed by the subsidence of the anxiety, with i t s victims l e f t to endure the new proscriptions, s o c i a l climate or le g a l penalties. In sexual matters, the ef f e c t s of such a f l u r r y can be devastating, e s p e c i a l l y when i t touches, as i t does i n the case of homosexuality, on public fears, (p. 45) These are some of the responses to AIDS as well as other diseases. Other Responses to .Plague Guenter B. Risse (1988), a medical h i s t o r i a n , used an ecol o g i c a l model, based on the notion of miasmas, to explore the dynamic re l a t i o n s h i p between the bi o s o e i a l environment and the human experience of epidemic diseases. He examined the s o c i a l context of epidemic diseases and the ways i n which p o l i t i c a l and health organizations have h i s t o r i c a l l y responded to c r i s e s . Risse selected three case studies f o r analysis: the bubonic plague i n Rome i n 1656, the cholera 16 epidemic of 1832, and the 1916 po l i o m y e l i t i s epidemic i n New York C i t y . Risse's account shows how s o c i a l l y marginal groups, ethnic minorities, and the poor have often been held responsible f o r epidemic diseases: the Jews were blamed for the Black Death i n Europe, the I r i s h were blamed fo r cholera i n New York City, and I t a l i a n s were accused of introducing p o l i o into Brooklyn. He discusses the frequent infringement of c i v i l l i b e r t i e s i n the name of public welfare, from the hanging of v i o l a t o r s of public health regulations i n seventeenth-century Rome to the t r a v e l r e s t r i c t i o n s and quarantines of children introduced during the twentieth- century p o l i o epidemic. Risse notes the draconian measures of i s o l a t i o n and quarantine generated considerable public panic and d i s t r e s s , while they generally f a i l e d to stem the progress of epidemic disease. From the fourteenth century to the present, despite enormous changes i n the practice of medicine and s o c i a l p o s i t i o n of physicians, there has been remarkable continuity i n how the profession has responded to the threat of contagion - i s o l a t e "the diseased." Changing Meanings i n Disease Charles E. Rosenberg (1988), a h i s t o r i a n , has provided a panoramic view of the h i s t o r i c a l changes i n the d e f i n i t i o n of disease, from sickness conceived i n la r g e l y i n d i v i d u a l terms as an imbalance between an organism and i t s environment, to the idea of each disease as a s p e c i f i c e n t i t y , with a s p e c i f i c cause to be discovered by laboratory research. He finds that the AIDS epidemic i l l u s t r a t e s both a 17 continuing dependence on medicine and a r e f l e c t i o n of culture i n which i t occurs. He argues that since there i s powerful t r a d i t i o n by some people of seeing epidemics as the r e s u l t of s o c i a l collapse, decay and God's wrath, i t may be d i f f i c u l t to extricate the concept of AIDS-meaning from h i s t o r i c plague metaphors. The e x t r i c a t i o n controversy i s bound together by several themes. Rosenberg (1988) states that "One i s the way that relationships between the medical profession and society are structured around interactions legitimated by the presumed existence of disease. Another theme i s the negotiated aspect of the disease as a s o c i a l phenomenon" (p. 12). According to Rosenberg (1988), "the perception of disease may have any one of many relationships to a possible b i o l o g i c a l substrate. In t h i s context, AIDS arrived as a novel and frightening stranger, posing i n stark form the questions about the c u l t u r a l and b i o l o g i c a l meanings of disease" (p. 30). Models of Disease Control David Rayside and Evert Linquist (1992), two Canadian community a c t i v i s t s , maintain i t i s possible to discern a fundamental struggle between two opposing groups i n the unfolding of AIDS prevention education i n Canada. One, drawing on elements of eontain-and-control models, was based on a well-entrenched t r a d i t i o n a l approach of the medical establishment and most public health bureaucracies. For most the 1980s, "the actions of many public o f f i c i a l s followed routines developed to deal with other diseases: focusing on protecting those not yet infected, t r e a t i n g the s i c k as 18 irresponsible and i n need of p o l i c i n g , leaving drug t e s t i n g i n i t i a t i v e s to pharmaceutical companies, and re t a i n i n g hypercautious methods for approving drugs" (p. 50). This perspective d i d not e n l i s t the p a r t i c i p a t i o n of community groups and p o l i t i c i a n s : the c r i t i c a l tasks were undertaken by medical doctors, researchers, and epidemiologists. Clashing with t h i s contain-and-control discourse has been a more inclusionary discourse. Community a c t i v i s t s , reformist public health o f f i c i a l s , and some doctors with large HIV/AIDS practices attached more si g n i f i c a n c e to patients' r i g h t s . They c a l l e d for comprehensive and frank education programs aimed at the enti r e population, generous funding of community groups to work with those most affected by the disease, extensive d i s t r i b u t i o n of condoms and needles f o r intravenous users, recognition of the si g n i f i c a n c e of discrimination associated with AIDS and HIV i n f e c t i o n , greater funding for and coordination of medical f a c i l i t i e s s p e c i f i c a l l y f or AIDS, a larger and more geographically dispersed network of doctors trained to deal with HIV and AIDS, more funds for research, and greater involvement i n the p o l i c y process on the part of community groups and people with AIDS. What gave t h i s view sp e c i a l prominence i n AIDS p o l i c y was that i t s proponents, working within community groups or i n t h e i r own medical practices, had borne much of the burden of providing services to people l i v i n g with AIDS and had generated safer-sex educational materials f o r the populations most seriously affected by the epidemic. (Rayside & Linguist, 1992, p. 51) Governmental avoidance of AIDS i n the f i r s t few years l e f t p u b l i c o f f i c i a l s without the expertise to address the broad 19 range of educational and s o c i a l issues posed by the disease, and established the community groups and t h e i r a l l i e s i n c r i t i c a l program delivery and agenda s e t t i n g r o l e s . The development of community-based AIDS programs challenges the notion that a "plague" could only be contained by s c i e n t i s t s . Peoples' Lives i n the Age of AIDS Dennis Altman (1988), a p o l i t i c a l s c i e n t i s t and h i s t o r i a n , has posed the paradox of AIDS i n r e l a t i o n to the gay movement i n the United States, A u s t r a l i a , and the United Kingdom. He provides a useful h i s t o r i c a l analysis of national differences i n dealings with the AIDS epidemic. He notes tension between two kinds of approaches, one focusing on t e s t i n g and screening e f f o r t s , the other on large-scale education and service programs. The emphasis i n each country r e f l e c t s differences i n p o l i t i c a l cultures and ideologies i n addition to the strength and degree of p o l i t i c a l organization of the gay community i n each nation. Altman argues that i n areas where gays have already carved out a place for themselves i n the p o l i t i c a l process, gay organizations have made t h e i r strongest contributions to health p o l i c y . However, Altman's analysis i s weakened by h i s f a i l u r e to discuss the two conceptions about the educational strategies used to confront AIDS which emerged during early p o l i c y formation (Fineberg, 1992; Sepulveda, 1992). The f i r s t assumes that because of the ways AIDS i s transmitted i t w i l l a f f e c t some groups rather than others, and therefore society as a whole w i l l be best protected by taking measures 20 against those affected groups or in d i v i d u a l s . The second considers AIDS/HIV to be an enemy of a l l people and thus deems i t necessary to protect a l l of society's members against i n f e c t i o n with HIV. New Practices i n Gay Communities The decline of new HIV incidence among cohorts of gay men i n the North America and Europe has often been c i t e d as one of the most rapid and extensive changes i n human behaviour ever observed (Mann, 1992b). Ample evidence indicates that prevention e f f o r t s slowed the spread of HIV i n gay communities and that many men adopted safer sex practices to avoid HIV i n f e c t i o n (Fauci, 1991; Mann, 1992a, Mann, 1992b). To date, most data on the incidence of HIV among gay men involves well-established urban gay communities i n North America, Western and Northern Europe, and to a les s e r extent i n Mexico and B r a z i l (Mann, 1992a, 1992b). Important cohort studies of gay men over the past ten years provide various h i s t o r i c a l views of the epidemic. In many urban gay communities, there has been a dramatic decline i n HIV incidence (Fauci, 1991; Brown, 1995). Less information e x i s t s about new HIV sero-prevalenee among bisexual men. However, a number of studies among STD c l i n i c patients show lower HIV prevalence among bisexual than s e l f - i d e n t i f i e d homosexual men (Mann, 1992a; Mann, 1992b). Large-scale behaviour change was observed f i r s t i n 1981 i n San Francisco and New York City, and by 1984 i t had reached Western Europe and Canada (Mann, 1992a, 1992b, 21 Rayside & Linguist, 1992, 1994). The d i f f e r e n t patterns of HIV incidence r i s e and decline suggest d i f f e r e n t l e v e l s of adopting and maintaining safer sex. For example> countries such as the Netherlands and France had an early decline i n incidence and then a plateau, suggesting both a continued l e v e l of unprotected anal intercourse, and, probably, a r e l a t i v e l y open sexual network (Fauci, 1991). In many c i t i e s , studies confirm that safer sex i s f a r from universal, with a large v a r i a t i o n among groups i n the same country, across geographic boundaries and i n d i f f e r e n t c u l t u r a l settings (Mann, Tarantola, & Netter, 1992). AIDS Prevention Education Programs A l l AIDS prevention education programs develop messages which are c a r r i e d through s p e c i f i c materials. The process of message/material development i n programs involves extensive and repeated consultation with target audiences and includes f i e l d t e s t i n g . However, message content has been ambiguous. For example, the warning against exchanging "bodily f l u i d s " may have avoided offence, but i t was interpreted i n c o r r e c t l y as including sweat, s a l i v a , and tears, f o r which there i s no evidence to suggest a possible r o l e i n HIV transmission (Siegel, Grodsky, & Herman, 1986; Fauci, 1991; Brown, 1995). AIDS prevention education programs usually promote public awareness, but the programs also focus on targeted audiences such as intravenous drug-users or gays. (Mann, 1992a; Brown, 1995). In addition, more advanced programs t r y to access not only easy-to-reaeh target groups such as school children and health workers, but also the hard-to- 22 reach, such as pros t i t u t e s and t h e i r c l i e n t s , s e l f - i n j e c t i n g drug users, and out-of-school youth. Some communities fear stigmatization and discrimination, which i n h i b i t s targeted prevention (Brunet, 1991; Cohen, 1991; Rayside & Linguist, 1992, 1994). AIDS prevention education programs u t i l i z e d several channels. Major channel choices include mass media, " l i t t l e media" (posters, brochures, f l y e r s ) , and face-to-face approaches. While an advanced program w i l l generally mix a l l three, i t usually emphasizes approaches i n which discussion and dialogue are possible (Mann, 1992a, Osburn, 1992). There i s consensus that mass media channels create awareness and set the agenda, but interpersonal channels influence behaviour ( S t o l l e r & Rotherford, 1989; Edgar, Hammond, Lee, & V i c k i , 1990; Hornik, 1991). Programs vary widely regarding the ex p l i c i t n e s s of sexual content and the extent to which moral judgements accompany t h i s information. An important issue i s the attitude towards condoms and the extent to which they are promoted. More advanced programs adjust the l e v e l of exp l i c i t n e s s i n consultation with target audiences and avoid a p r e j u d i c i a l moral dimension. In such programs, the i m p l i c i t and e x p l i c i t attitude towards condoms i s p o s i t i v e and, while targeted, the condom promotion e f f o r t also reaches the general public. Many studies show that attitudes towards condoms are strongly related to use (Barling & Moore, 1990; Ross, 1992). Condom use i s also linked to the e f f i c a c y of condoms as a b a r r i e r to HIV i n f e c t i o n (Robert & 23 Rosser, 1990; Strader & Baemen, 1991). Those who misunderstand the causal rel a t i o n s h i p between HIV i n f e c t i o n and AIDS, and who have had experiences with condoms of poor quality , are more l i k e l y to believe that condoms are an i n e f f e c t u a l b a r r i e r to HIV i n f e c t i o n . While HIV/AIDS i s f i r s t a health issue, i t s s o c i a l , c u l t u r a l , economic, l e g a l , e t h i c a l , and p o l i t i c a l dimensions and impacts are now widely appreciated (Brown, 1995). National HIV/AIDS prevention education programs often form a l i n k with and generate i n s t i t u t i o n a l networks including community-based and nongovernmental organizations. Yet, many of these organizations are ill-equipped to do a job which requires o f f i c i a l oversight and resources (Silverman, 1992). There are two v i t a l dimensions to the linkage between HIV/AIDS prevention education programs and community-based and non-governmental organizations. F i r s t , information about HIV/AIDS transmission i s provided to c l i e n t s along with information about condom a v a i l a b i l i t y , c o n f i d e n t i a l AIDS t e s t s i t e s , access to needle-exchange programs. More advanced HIV/AIDS prevention education programs are c a r e f u l l y t a i l o r e d to es t a b l i s h linkages with already avai l a b l e services and/or with services developed s p e c i f i c a l l y i n association with the health promotion program (Mann, 1992a). The second dimension of linkage involves integration of HIV/AIDS prevention education within e x i s t i n g health and s o c i a l services. Advanced programs usually w i l l e s t a b l i s h close t i e s with such programs, 24 p a r t i c u l a r l y i n maternal and c h i l d health, family planning, and sexually transmitted disease control. The challenge i s to f i n d educational strategies which maintain optimum l e v e l of effectiveness among those programs that operate alongside and within e x i s t i n g networks (Sepulveda, Fineberg, & Mann, 1992) . While AIDS prevention education programs a l l require some l e v e l of s o c i a l and p o l i t i c a l acceptance, the extent and manner of involvement of p o l i t i c a l and s o c i a l leaders varies widely. More advanced programs have e x p l i c i t and highly v i s i b l e linkages with selected p o l i t i c a l and/or s o c i a l leaders; however, leaders have l e f t AIDS prevention programs f o r two reasons (Sepulveda, 1992). F i r s t , since AIDS became a health problem, emerging leaders have received intense p o l i t i c a l pressure and media attention, often to the i r r i t a t i o n of supervisors and educators who are reluctant to share the li m e l i g h t (Rayside & Linguist, 1992; Brown, 1995). Second, the lack of quick and tangible r e s u l t s from AIDS prevention education a c t i v i t i e s have caused f r u s t r a t i o n and fatigue among program workers and volunteers (Rayside & Linguist, 1992, 1994; Brown, 1995). The i n s t i t u t i o n a l relationships between HIV/AIDS prevention education programs and national AIDS committees have involved issues of s t a f f , budget, p o l i c y , and strategy formation. More advanced programs have adequate s t a f f of s u f f i c i e n t grade and professionalism, a budget, and close linkage with o v e r a l l national AIDS program and p o l i c y process. In addition, advanced programs are decentralized 25 from headquarters and c a p i t a l c i t i e s to d i s t r i c t and community l e v e l s . Decentralization has involved the delegation of both r e s p o n s i b i l i t y and authority (including f i n a n c i a l resources) to l o c a l s i t e s of influence. AIDS i s a very c o s t l y disease and financing the care of people with AIDS and prevention programs remains one of the biggest challenges facing AIDS educators and others (Mann, 1992; Sepulveda, 1992). Typology of AIDS Prevention Education Programs In general, AIDS prevention education programs can be divided into three groups (Perrow & Gui l l e n , 1990; Robert & Rosser, 1990; Mann, 1992a, 1992b; Osburn, 1992). Information type programs are focused on information. Empowering types are moderately more complex and include e f f o r t s to enhance self-empowerment as well as provide information. F i n a l l y , community advocacy type programs not only d e l i v e r information and address self-empowerment, they also strengthen community advocacy. Broadly considered, these three program types correspond to d i f f e r e n t l e v e l s i n conceptualizing health promotion i t s e l f . The one l i m i t e d viewpoint (information type) defines i t s task as provision of information. Such programs often disseminate t h i s information from a sing l e source, using mass media channels and time-limited campaigns i n an e f f o r t to reach many people (Osburn, 1992). The information provided i s often imbued with consensus attitudes regarding r i s k behaviours. As HIV/AIDS i s considered a health problem, information emanates from 26 health i n s t i t u t i o n sources. L i t t l e attention may be given to health and s o c i a l service linkages (Perrow & G u i l l e n , 1990; Robert & Rosser, 1990). Information type programs have been observed during the f i r s t year or so of national AIDS program a c t i v i t y , with subsequent evolution to the second and t h i r d types (Mann, 1992a; Osburn, 1992). However, information type programs may p e r s i s t beyond the i n i t i a l period i f a national AIDS program operates i n an ambivalent and frankly h o s t i l e s o c i a l and p o l i t i c a l environment (Mann, 1992; Rayside & Linquist, 1992; Fee, 1992). The second stage i n thinking about health promotion r e f l e c t s awareness of the need to examine c l o s e l y the motivating factors and constraints operating on the ind i v i d u a l s whose past, present, and future behaviours are at issue. The i n d i v i d u a l locus of control perspective leads to concern that information be well-targeted (Osburn, 1992). Information i s therefore designed with input from target audiences and includes e x p l i c i t attention to health and s o c i a l services needed to support, immediately and over time, s p e c i f i c behaviours and behaviour change. In empowering type programs, HIV/AIDS i s generally described as a global problem which concerns everyone; awareness of the s o c i a l dimension i s reinforced by c l e a r messages about non- discrimination. Empowering type programs use a broader mix of media, with increasing emphasis on person to person approaches (Mann, 1992a, 1992b). The attitude toward sexuality i s neutral or p o s i t i v e and can be quite e x p l i c i t depending upon 27 the target audience; the approach to condom promotion i s also targeted. Recognizing that people are influenced and reached by many channels and i n s t i t u t i o n s , the program seeks integration i n the national health system and forms a l l i a n c e s with other sectors of government and with other agencies and groups. Realizing that people are best reached i n and through t h e i r communities, a national HIV/AIDS health promotion program seeks decentralization (Mann, 1992a). Overall, the empowering type program i s integrated within, and supported by, a national AIDS program, the health sector, and the broader community (Mann, 1992a; Rayside & Linguist, 1992; Osburn, 1992). In sum, the emphasis of the empowering type program i s on motivation and support f o r informed i n d i v i d u a l behaviour change. The t h i r d stage of health promotion recognizes the broad p o l i c y and s o c i a l dimensions of health promotion. Information provided by community advocacy type programs, developed with target audiences, emphasizes s o l i d a r i t y and the need to protect the ri g h t s and dig n i t y of HIV-infected persons. The community advocacy type program i s decentralized, so that information i s provided from within many d i f f e r e n t i n s t i t u t i o n s and organizations (Mann, 1992a; Rayside & Linguist, 1992). The community advocacy type program distinguishes i t s e l f , p a r t i c u l a r l y i n the areas of linkage with health and s o c i a l services and i t s rela t i o n s h i p with s o c i a l and p o l i t i c a l leadership and i t s s t r a t e g i c c a p a b i l i t y . Community advocacy type programs include elements of Types I and I I , 28 but go beyond these to consider the c u l t u r a l , economic, and p o l i t i c a l impediments to promotion of health. For community advocacy type programs, information about HIV/AIDS i s only useful when i t takes both i n d i v i d u a l and s o c i a l r e a l i t i e s into account. Therefore, such issues as women's c a p a b i l i t y i n a given s o c i a l system to refuse intercourse without a condom, or the a v a i l a b i l i t y of t r u l y c o n f i d e n t i a l diagnostic or support services, or the r e a l i t i e s of condom d i s t r i b u t i o n , a v a i l a b i l i t y and cost, are seen as central concerns (Mann, 1992a, 1992b; Rayside & Linguist, 1992). AIDS Poli c y i n Canada AIDS p o l i c y i n Canada has moved through three d i s t i n c t stages (Rayside & Lindguist, 1992, 1994). These stages do not follow Mann's hist o r y of AIDS. The f i r s t began i n the early 1980s, as many p o l i t i c i a n s and o f f i c i a l s ignored the epidemic or responded very cautiously. The second stage began i n mid-1985, as media greatly i n t e n s i f i e d p u blic i n t e r e s t and concern i n Canada and when the development of HIV blood t e s t s raised new issues for debate. In t h i s period, the Canadian governments began to make s i g n i f i c a n t , but usually ad hoc, commitments to AIDS programs. As the number of AIDS cases increased, community groups grew i n s i z e and p r o l i f e r a t e d , with new m i l i t a n t voices broadening the range and i n t e n s i t y of c r i t i c i s m directed at governmental i n a c t i v i t y . The t h i r d period began i n the spring of 1988. Protests by various community groups and a c t i v i s t s at the National AIDS Conference put pressure on 29 a l l l e v e l s of government to develop coherent AIDS strategies. In the confrontation between government policymakers and AIDS a c t i v i s t s , the impact of two factors must be kept i n mind (Rayside & Lindquist, 1992, 1994; Brown, 1995). The f i r s t i s the presence of public health insurance throughout Canada. There i s uneven access to medical personnel with an i n t e r e s t and expertise i n AIDS, p a r t i c u l a r l y outside major c i t i e s . There are also serious f i n a n c i a l burdens on people with HIV and AIDS who wish to use drugs that are not "approved" by p r o v i n c i a l authorities, but few of these problems are as severe as i n the more p r i v a t i z e d American health care system. The second important factor to keep i n mind i s the e f f e c t of U. S. developments on Canadian public p o l i c y and community activism (Rayside & Linguist, 1992, 1994). Unlimited access to the American media meant that Canadians were made aware of the disease at about the same time as Americans, before substantial numbers of Canadians became sick . Such lead time may well have encouraged a calmer public reaction; there were fewer cases of panic about casual contact i n Canada than there were i n the United States, and more readiness on the part of most media outlets to avoid sensationalization. The view that AIDS was j u s t i f i a b l e r e t r i b u t i o n for an immoral l i f e s t y l e has never had as strong a public voice as i n the United States, B r i t a i n , or A u s t r a l i a (Rayside & Linguist, 1992, 1994; Brown, 1995). 30 Although a l l Canadians are covered by publicly-funded medical insurance, health care i s primarily a p r o v i n c i a l r e s p o n s i b i l i t y . The provinces organize the d e l i v e r y of services, chartering and negotiating with various professional bodies to determine fee schedules, funding hospitals f o r c a p i t a l and operating expenditures as well as to e s t a b l i s h regional and l o c a l public health networks. The federal government plays an important r o l e through i t s spending power. L e g i s l a t i o n has also increased, e s p e c i a l l y with regards to the Canada Health Act. On several occasions i n the past, the federal government agreed to match p r o v i n c i a l contribution to hospital and medical insurance as long as t h e i r health delivery systems met a set of minimum c r i t e r i a (Rayside & Linguist, 1992). The influence of federal spending i s also evident i n the fact that most medical research grants i n Canada come from federally-funded agencies. In a more general way, the federal government has influenced the provinces by coordinating the flow of information and organizing f e d e r a l - p r o v i n c i a l meetings of p o l i t i c i a n s and o f f i c i a l s i n the health f i e l d (Rayside & Linguist, 1992, 1994; Brown, 1995). Summary This chapter began with a discussion about the p l u r a l i t y of the s o c i a l constructions of disease and representations of AIDS as the "other" plague. I t i s d i f f i c u l t to separate the s c i e n t i f i c , moral, p o l i t i c a l , and s o c i a l dimensions from disease constructions. The concept of plague as understood by society has changed since 31 an t i q u i t y and holds both e x p l i c i t and i m p l i c i t notions about i l l n e s s and well-being. Combining with the fear of death and the unknown, the concept of plague provides the basis for society's insistence that s o c i a l l y marginalized groups are responsible f o r epidemics and a f f e c t s how the medical profession has responded to the threat of contagion, through the ideology of " i s o l a t e the diseased" (Rosenberg, 1988; Risse, 1988). Despite changes i n the medical d e f i n i t i o n of disease during the l a s t century, society's p r e v a i l i n g fear of AIDS as a plague and attendant s o c i a l stigmas has not been eliminated. Thus AIDS revives the idea of a tainted community and contributes to homophobia. I t i s no surprise, then, that the f i r s t approach to AIDS prevention education was based on "contain-and-control" models of disease protection. Fortunately, community a c t i v i s t s , reformist public health o f f i c i a l s , and some doctors attached more si g n i f i c a n c e to patients' r i g h t s and ended the c a l l f o r i s o l a t i o n of PWAs. AIDS prevention education has been hampered because of two antagonistic conceptions about AIDS transmission. The f i r s t assumes that educators must target t h e i r strategies towards p a r t i c u l a r groups that have high incident rates of HIV i n f e c t i o n . The second considers i t necessary to protect a l l of society's members against HIV i n f e c t i o n . Evidence suggests that HIV rates are d e c l i n i n g i n the gay communities of North America and Europe. To date, t h i s decline has been often c i t e d as one of the most rapid and extensive changes i n human behaviour ever observed. However, studies confirm 32 that safer sex i s f a r from universal. This has been a problem i n the his t o r y of AIDS since the period of i n i t i a l discovery (1981-1985). So c i a l s c i e n t i s t s noted that there was l i t t l e r e l i a b l e or useful information on knowledge of sexuality and s e l f - i n j e c t i n g drug behaviour. Other problems i n i n s t i t u t i o n a l networks, p o l i t i c a l and s o c i a l leadership, linkage with health and s o c i a l services, and funding have li m i t e d the effectiveness of AIDS prevention education strategies. Three types of strategies e x i s t and correspond to d i f f e r e n t l e v e l s i n conceptualizing health promotion i t s e l f . AIDS p o l i c y i n Canada has moved through three phases. I t was not u n t i l 1988 that pressure on a l l l e v e l s of government led to the proposal for the development of a coherent AIDS strategy. In addition the h i s t o r y of AIDS p o l i c y i n Canada has often been d i f f e r e n t from other e x i s t i n g h i s t o r i e s of AIDS. 33 CHAPTER THREE: A RATIONALE FOR DISCOURSE ANALYSIS In t h i s chapter, I define what discourse i s and then I outline various approaches to h i s t o r i c a l inquiry and discourse analysis. The approaches are based upon p o s t s t r u c t u r a l i s t c r i t i q u e s of q u a l i t a t i v e research made by various s o c i a l s c i e n t i s t s . Since so much of AIDS and AIDS education involves perceptual and l i n g u i s t i c metaphors and constructs, I chose a combination of methods to analyze the functions of discourse about and on AIDS i n p o l i c y documents. My approach i s informed by poststructural notions of discourse and the formation of s u b j e c t i v i t y . D e f i n i t i o n of Discourse F i r s t , what i s discourse? Discourse i s the ways i n which a language as a material practice constructs and represents s o c i a l subjects. Discourse also means the silences i n texts, i n language, and the unspoken conventions of s i g n i f i c a t i o n . Discourse, sometimes spoken of as text, i s one of the most powerful ways i n modern and postmodern s o c i e t i e s f o r the forming and shaping of humans as subjects. Discourses and t h e i r related d i s c i p l i n e s and i n s t i t u t i o n s are functions of power: they d i s t r i b u t e the functions of power. They are power's relays throughout the modern s o c i a l system. Foucault (1983) maintains that: i n e f f e c t , what defines a rel a t i o n s h i p of power i s that i t i s a mode of action which does not act d i r e c t l y and immediately upon an action, on e x i s t i n g actions or on those which may a r i s e i n the present or the future. A power re l a t i o n s h i p can only be a r t i c u l a t e d on the basis of two 34 elements which are each indispensable i f i t i s r e a l l y to be a power relationship, (p. 220) Power must not be thought of merely as negative, as repression, domination, or i n h i b i t i o n . On the contrary, i t must always be seen as "a making possible," as an opening up of f i e l d s i n which c e r t a i n kinds of action and production are brought about. As power disperses i t s e l f , i t opens up s p e c i f i c f i e l d s of p o s s i b i l i t y ; i t constitutes e n t i r e domains of action, knowledge, and s o c i a l being by shaping the i n s t i t u t i o n s and d i s c i p l i n e s i n which, for the most part, we l a r g e l y make ourselves (Foucault, 1983). In these domains, human beings become the in d i v i d u a l s , the subjects, that the domains make us. This phrasing, of course, makes things sound more deterministic than they are i n fact, for there i s no subject to be determined i n advance, the subject comes to be whatever or whoever he or she i s only within t h i s set of discursive and nondiscursive f i e l d s (Hall, 1992) . What Foucault means when he says that power acts upon actions i s p r e c i s e l y that i t regulates the formation of our s u b j e c t i v i t i e s . "Individuation," then i s , argues Foucault, the space i n which we are most regulated by the r u l i n g d i s c i p l i n e s of language, sexuality, economics, culture, and psychology. The study of discourse, then, leads i n e v i t a b l y to understanding how material " r e a l i t i e s " act upon the actions of others, that i s , of a l l of us, no matter where and how d i f f e r e n t l y placed we are i n the g r i d of i d e n t i t y and p r i v i l e g e these r e a l i t i e s constitute. Foucault (1983) argues 35 that power i s deeply rooted i n s o c i a l r e l a t i o n s , but that t h i s f a c t should not be taken f a t a l i s t i c a l l y : For to say that there cannot be a society without power r e l a t i o n s i s not to say either that those which are established are necessary, or, i n any case, that power constitutes a f a t a l i t y at the heart of s o c i e t i e s , such that i t can not be undermined. Instead I would say that the analysis, elaboration, and bringing into question of power re l a t i o n s and the antagonism between power r e l a t i o n s and i n t r a n s i t i v i t y of freedom are permanent p o l i t i c a l tasks inherent i n a l l s o c i a l r e l a t i o n s , (p. 223) Discursive analysis aims to show how events and t h e i r simultaneity within ostensibly d i f f e r e n t f i e l d s can transform en t i r e domains of knowledge production. For example, the l a s t decade has witnessed the production and p r o l i f e r a t i o n of a number of competing AIDS discourses. According to Dickinson (1995): many of [the AIDS discourses] are c h a r a c t e r i s t i c a l l y apocalyptic i n tone, from the d i r e predictions of biomedicine to the sensational headlines i n the media; from the c a l l s f o r mandatory t e s t i n g and quarantine of the part of Jesse Helms and other right-wing p o l i t i c i a n s to the holocaust imagery and graphics employed by Larry Kramer and like-minded gay a c t i v i s t s ; from the m e t a - c r i t i c a l interventions of i n t e l l e c t u a l s l i k e Susan Sontag to the arresting v i s i o n s created by a r t i s t s l i k e Tony Kushner. (p. 227) In addition to these " o f f i c i a l ' 1 discourses that the AIDS c r i s i s has produced, the AIDS c r i s i s has also produced a number of " u n o f f i c i a l " counter-discourses. By using discourse analysis, I i d e n t i f y how documents or discourses have mobilized c e r t a i n notions and meanings of AIDS and AIDS prevention education. I also examine how c e r t a i n notions of AIDS have been suppressed over time. 36 H i s t o r i c a l Methods A h i s t o r y seeks to reproduce and interpret concrete events as they a c t u a l l y occurred i n time. There i s no single standard by which we can i d e n t i f y true h i s t o r i c a l knowledge (Shafer, 1974; Scott, 1989). Rather, there are contests, more or le s s c o n f l i c t u a l , more or less e x p l i c i t , about the substance, uses, and meanings of the knowledge that we c a l l h i s t o r y . My aim i n t h i s study i s to show c o n f l i c t s i n the meanings as evidenced i n the documents. This process i s about the establishment and challenge and protection and contestation of hegemonic d e f i n i t i o n s of h i s t o r y (Scott, 1989) . Historians create nuanced descriptions for several purposes. Some seek to create the past as contemporaries would have experienced i t . Others t r y to discern patterns i n events over time, and thus interpret primary sources i n ways that would have astonished contemporaries. Many hi s t o r i a n s want both to discover h i s t o r i c a l patterns and accurately r e f l e c t the l i v e d experience of the past (Shafer, 1974). In addition, h i s t o r i a n s are usually conscious of the c u l t u r a l l y s p e c i f i c , and hence are wary of p o s i t i n g universal p r i n c i p l e s . Historians often disagree about major issues of theory and pra c t i c e ; however, hist o r i a n s share a number of historiographic p r i n c i p l e s (Shafer, 1974; Scott, 1989). The three most important of these p r i n c i p l e s i n the context of disease are cautious adherence to s o c i a l constructionism, 37 profound skepticism about hi s t o r i c i s m , and wariness about presentism (Fee & Fox, 1988). So c i a l constructionists hold that h i s t o r i c a l r e a l i t y i s created by people; that i s , i t does not e x i s t as a t r u t h waiting to discovered. Some s o c i a l constructionists include the data of the b i o l o g i c a l and physical sciences i n t h e i r analysis, arguing that the i n s t i t u t i o n s and procedures of these d i s c i p l i n e s are the r e s u l t of complex s o c i a l i n t e r a c t i o n s . Historians, though sympathetic to s o c i a l c o n s t r u c t i o n i s t interpretations of the h i s t o r y of disease and medical practice, r e j e c t the r a d i c a l r e l a t i v i s m that denies that knowledge i n the b i o l o g i c a l sciences can be independent of i t s s o c i a l context (Fee & Fox, 1988). S t i l l others remain uncertain about the proper scope of the theory of s o c i a l construction. Consequently, t h i s study considers that the concept of AIDS i s implicated i n the s o c i a l construction of the phenomena i t appears to describe, assembling a miscellaneous c o l l e c t i o n of instances, apparently lacking coherence other than i t supplies (Christian-Smith, 1990; Smith, 1990). The second p r i n c i p l e , skepticism of h i s t o r i c i s m , i s l e s s c o n troversial. Few h i s t o r i a n s now i n s i s t , as most of our predecessors did u n t i l a few decades ago, that s o c i e t i e s or nations evolve or unfold toward goals that may be discerned with h i s t o r i c a l research: from, for example, authoritarianism toward democracy, from inequality to counter-hegemony, and from primitive to mature, even from 38 capitalism to a c l a s s l e s s society. Although most scholars argue that i n some areas, medical knowledge, fo r instance, b e n e f i c i a l advance has occurred i n recent centuries, hardly anyone s t i l l i n s i s t s that the human condition i n general has been progressing as a r e s u l t of inexorable h i s t o r i c a l change (Fee & Fox, 1988; Rosenberg, 1988). This study assumes that h i s t o r i c a l meanings are always embedded i n our conceptions of disease; that i s , the hi s t o r y of epidemiology must be concerned with the rel a t i o n s h i p between s c i e n t i f i c and c u l t u r a l assumptions. Historians must explore the s o c i a l contexts i n which "diseases" such as AIDS are produced, reproduced, defined, analyzed, and acted upon. The t h i r d p r i n c i p l e , wariness about presentism, i s probably the most widely shared among those who use h i s t o r i c a l methods. Presentism means d i s t o r t i n g the past by seeing i t only from the point of view of our own time, rather than using primary sources to understand how other people organized and interpreted t h e i r l i v e s . The AIDS epidemic can tempt his t o r i a n s to venture f a c i l e analogies with events i n the past even though we know better (Gould, 1990; Fee, 1992). This study notes that the AIDS epidemic may mark the f i r s t time a population s u f f e r i n g from a disease has played such a large r o l e both i n the making public p o l i c y through lobbying and p o l i t i c a l a c t i v i t i e s , and through the provision of d i r e c t patient care, supportive services, and health education. Nevertheless the researcher's r o l e i s to struggle with the problems of 39 presentism. Thus, i n the representation of AIDS as epidemic, who i s speaking and who i s l i s t e n i n g ? Or perhaps more importantly, to whom are we speaking and to whom are we lis t e n i n g ? Narrative Analysis Many contemporary historians see the i n t e r p r e t a t i v e issues i m p l i c i t i n data c o l l e c t i o n to the construction of a h i s t o r i c a l narrative (Tuchman, 1994). However, narratives are usually loosely formulated, are almost i n t u i t i v e , and use terms defined by the analyst. Narrative analysis t y p i c a l l y takes the perspective of the t e l l e r , rather than that of the society. I f one defines narrative as a story with a beginning, middle, and end that reveals someone's experiences, narratives take many forms, are t o l d i n many settings, before many audiences, and have various degrees of connection to actual events or persons (Manning & Cullum- Swan, 1994). Thus themes, p r i n c i p a l metaphors, d e f i n i t i o n s of narrative, defining structures of s t o r i e s , and conclusions are often defined p o e t i c a l l y and a r t i s t i c a l l y , and are quite context bound (Atkinson, 1990). Hence, representation becomes a concern for the h i s t o r i a n and other s o c i a l s c i e n t i s t s . Therefore, i t i s necessary to caution readers that AIDS i s being redefined as a disease of black, Latino, and minority communities, women, and children (Morales & Bok, 1992; Dickinson, 1995). Now that the rate of new i n f e c t i o n i s d e c l i n i n g among the gay community, the s p e c i f i c association of AIDS/homosexuality i s fading, and 40 new associations are being made. The h i s t o r i c a l process of the d e f i n i t i o n and r e d e f i n i t i o n of disease thus continues as i d e o l o g i c a l l y contested and s h i f t i n g t e r r a i n , reguiring a method of analysis that allows for a discursive reading to be combined with a h i s t o r i c a l one. Poststructuralism Structuralism has been c a l l e d dehumanizing i n i t s d r i f t and implications (Smith, 1990; Roman, 1995). As a humanist, I object to structuralism because i t e v i c t s human agency from human hist o r y ; that i s , people become the passive bearers of l i n g u i s t i c codes and deterministic approaches to ideology. People are l i t t l e more than vectors of s t r u c t u r a l determinations. Structures e x i s t as the organizing centers of s o c i a l action; persons are i n every sense not only the creations of such structures,, but manifestations of elements and rules created by s o c i a l structures (Manning & Cullum- Swan, 1994). Poststructuralism contains modifications of s t r u c t u r a l i s t themes. One must accept the d i f f i c u l t y of reading intentions from speech acts or texts and eschew f i n a l answers through poststructural analysis. P o s t s t r u c t u r a l i s t s urge careful reconsideration of written texts and theory formulation, constitution, and conventional i n t e r p r e t a t i o n . To some extent, because the conventional canons of inter p r e t a t i o n r e f l e c t dominant values (and wri t e r s ) , they obscure the vir t u e s of writers, ideas, perspectives, and values deemed marginal or oppositional 41 (Manning & Cullum-Swan, 1994). In t h i s sense, poststructuralism turns attention to the margins and reverses the usual adherence to dominant c u l t u r a l values. Texts, i n p o s t s t r u c t u r a l i s t terms, are not objects or things. The p o s t s t r u c t u r a l i s t mode of discourse analysis implies that the s o c i a l , c u l t u r a l , economic, and p o l i t i c a l contexts determine to a large degree the interpretations of AIDS which are selected as s o c i a l l y relevant, that w i l l represent the future s o c i a l r e a l i t y of the disease. Data and Data Analysis The following texts are u t i l i z e d i n t h i s analysis: personal journals, newsletters, p o l i c y documents, minutes from board meetings, and annual reports. Access to the personal journals was secured by a number of informal meetings that took place during the f a l l of 1994. An educator who was a volunteer at AIDS Vancouver introduced me to writers of the personal journals. A f t e r numerous meetings, I was given permission to u t i l i z e the journals i n my study because they f e l t my analysis would be c r i t i c a l f or any further development of AIDS prevention education and p o l i c y i n Vancouver. Both of the writers have been and are active i n the development of AIDS prevention education and have been given pseudonyms i n t h i s study. Their journals are not only r i c h i n description, but also i n r e f l e c t i o n s . One of the writers i s s t i l l active i n Vancouver AIDS community. The other writer i s now working nat i o n a l l y and i n t e r n a t i o n a l l y on various AIDS projects. My analysis has 42 been made availa b l e to them for possible misunderstandings and feedback. We had several meetings over the l a s t year and no misunderstandings occurred. AIDS Vancouver has kept records since i t s inception i n the spring of 1983. I u t i l i z e d several newsletters including AIDS Vancouver: The Volunteer Voice Newsletter. B. C. Persons With AIDS Newsletter. and Contact. Policy reviews were done sporadically over the l a s t decade and board meetings were held monthly since 1983. These discourses were u t i l i z e d i n the study and are made availa b l e to the public by the l i b r a r y and archives of AIDS Vancouver. I also consulted the Annual Report of the Medical Health Officer of the Citv of Vancouver. 1983-1991. The c i t y stopped publishing the "annual report" a f t e r 1991. I also consulted the Annual Report of the Ministry of Health of the Province of B r i t i s h Columbia for the years 1983 to 1994. The documents are d i s t i n c t i v e contemporary forms of s o c i a l organization which intersect with the l a r g e l y h i e r a r c h i c a l structures of state, business, and other administered formal organizations (Smith, 1990). They include s c i e n t i f i c discourse as well as the public textual discourses of AIDS. I elucidate the s o c i a l r e l a t i o n s around the discourse of AIDS by comparing the " u n o f f i c i a l " documents to the " o f f i c i a l " documents. By doing so, I reveal c o n f l i c t s , s i m i l a r i t i e s , and phases i n the texts. The investigation of textual practices makes v i s i b l e many phases of the organizational and discursive processes that are otherwise inaccessible. In p a r t i c u l a r , the formal, 43 design, planned, and organized character of any organization depends heavily on practices, which coordinate, order, provide continuity, monitor, and organize r e l a t i o n s between d i f f e r e n t segments and phases of organizational course of action (Smith, 1990). Discourse analysis provides a standpoint from which the researcher's own conduct or the conduct of others can be examined (Scott, 1989; Smith, 1990). I t i s not only an in t e r n a l r e f l e c t i o n , but a shared practice of r e f l e c t i o n on other discursive standpoints. Gays and heterosexuals and various groups may not share the same discourse or common standpoints. Only by comparing discourses of s p e c i f i c groups i s i t possible to discover what they share and what they do not. According to Dorothy Smith, a feminist s o c i o l o g i s t , discourses are s o c i a l r e l a t i o n s which are more than simply an expansion of communication beyond the l o c a l . They reorganize relationships among l o c a l everyday worlds within them and by r e l a t i n g them to others through common p a r t i c i p a t i o n i n the te x t u a l l y mediated discourse. People scattered and unknown to one another are coordinated i n an orientation to the same texts. Public textual discourse creates new forms of s o c i a l r e l a t i o n s . (Smith, 1990, p. 168) The foregoing discussion implies an approach to documents or texts which says that they are situated i n s o c i a l r e l a t i o n s . I t thereby avoids t r e a t i n g as given the very practices of detachment c h a r a c t e r i s t i c of the textual mode. I t i n s i s t s also on the ma t e r i a l i t y of the text as co n s t i t u t i v e of the s o c i a l courses of action i n which the text becomes active. Hermeneutie practices - concepts, 44 categories, codes, methods of interpretation, schemata, and the l i k e - must be understood as active constituents of s o c i a l r e l a t i o n s and s o c i a l courses of actions rather than merely as constituents or indices of AIDS. Interpretative practices which activate the text are viewed as properties of s o c i a l r e l a t i o n s . Recognizing the documents or text as c o n s t i t u t i v e of s o c i a l r e l a t i o n s also means being interested i n the s o c i a l organization of the text production as a p r i o r phase i n the s o c i a l r e l a t i o n rather than simply the work of a p a r t i c u l a r author (Christian-Smith, 1990; Smith, 1990; Roman, 1995). Thus, I contextualized the documents as to t h e i r l o c a t i o n i n a s o c i a l r e l a t i o n . I t i s necessary to emphasize the non-linearity and temporality of the concept of s o c i a l r e l a t i o n . I analyze the contexts of the texts or acts not as l i m i t e d by a time bound frame such as a s e t t i n g or an occasion, but as constituents of a sequential s o c i a l course of action through which various s u b j e c t i v i t i e s are related. A given l o c a l l y h i s t o r i c instance i s explored as a constituent of a larger s o c i a l process. I t i s an analysis which seeks to d i s c l o s e the non- l o c a l determinations of l o c a l l y h i s t o r i c or l i v e d orderliness (Smith, 1990). Such p o s s i b i l i t i e s as multiple simultaneous occurrences of a text, or i t s repeated uses on a number of occasions on which text i s treated as the same, are to be seen as organizing e x t r a - l o c a l r e l a t i o n s among the d i f f e r e n t settings. The r e p l i c a b l e or recurrent character, the patterning of the s o c i a l r e l a t i o n s of the r u l i n g , depend 45 upon t h i s movement between the textual and the l o c a l l y h i s t o r i c . The other central focus of the investigation into textual r e l a t i o n s and forms of actions must be the reader- text r e l a t i o n . The text does not appear from nowhere (Foucault, 1977, 1983; Bove, 1994). The text should be understood as having been produced to intend i n t e r p r e t a t i v e practices and usages of the succeeding phases of the r e l a t i o n . The text-reader moment i s contained as a p o t e n t i a l i t y i n the text i t s e l f (Bove, 1994; Roman, 1995). The predominant sources for t h i s study are those sources which have been developed as the l i t e r a t u r e on AIDS prevention education i n Vancouver. Although much of the l i t e r a t u r e on AIDS has been included, three areas ( o r i g i n a l l y researched) have been omitted - the l i t e r a t u r e of AIDS i n A f r i c a , AIDS and women, and the impact of the gay press and popular society. This act of omission does not demean the si g n i f i c a n c e of these issues i n understanding AIDS; they are part of the phenomenon of AIDS and AIDS prevention education. Rather, these texts do not d i r e c t l y reveal how AIDS prevention education programs have been constructed, delivered, and implemented with gay men by gay men. Obviously, the omissions may deal with AIDS prevention education, but they deserve f u l l e r treatment than my study alone can give. The a n a l y t i c a l a b i l i t y to investigate the text depends upon the competence of the p r a c t i t i o n e r of those r e l a t i o n s . 46 Thus the analyst does not have to pretend to withdraw as a member of society i n performing a n a l y t i c work (Smith, 1990; Roman, 1996). On the contrary, such analysis depends p r e c i s e l y upon such membership; i f the analyst does not already command the i n t e r p r e t i v e method of the r e l a t i o n a l process being investigated, i t has to be learned (Smith, 1990; Roman, 1995). As a person who has been a "buddy" to numerous PWAs, I am aware of the issues surrounding representation of i d e n t i t y and difference, safer sex, and persons with AIDS and HIV. This could r a i s e e t h i c a l concerns for some. My location as an Eurocanadian male h i s t o r i a n and researcher w i l l hopefully address s u b j e c t i v i t y concerns because I am aware that discourse i t s e l f i s an event that involves not only the text, but i t s p o s i t i o n within a given s o c i a l space, including the speaker, location, and hearers of discourse. My analysis i s mediated by the following questions. What i s being said? To whom and f o r whom i s i t being said? How i s i t being said? These w i l l determine how the text i s constructed and read. Furthermore, my i n t e r p r e t a t i o n i s compared to other analyzes for v a l i d i t y and r e l i a b i l i t y . I n s i s t i n g on the m a t e r i a l i t y of the text and on the actual s o c i a l l y organized a c t i v i t i e s , including writing and reading, a r t i c u l a t i n g texts with s o c i a l r e l a t i o n s , as fundamental to a m a t e r i a l i s t investigation of knowledge and culture (Smith, 1990; Roman, 1996). The study of AIDS prevention education or t e x t u a l l y mediated s o c i a l r e l a t i o n s , 47 undertaken here, i s not a d i s t i n c t f i e l d . Nor does i t develop i t s own theories and methods of research. Rather, t h i s study explores the actual ways i n which s o c i a l r e l a t i o n s about AIDS prevention education are organized and how they operate. Summary The purpose of t h i s chapter was to develop a methodology f o r the subsequent analysis of AIDS prevention education programs i n Vancouver between 1983 and 1994. Discourse or text i s a powerful way i n today's society to form and shape us as subjects. Discourses and t h e i r related d i s c i p l i n e s are also functions of power which must not be seen as negative, repressive, or dominating, though they can be. Rather, power influences various domains and i n s t i t u t i o n s which, i n turn, make us into the i n d i v i d u a l s we are today. Bringing into question power r e l a t i o n s i s a central feature of discourse analysis which aims to show how adjacency of events i n various f i e l d s can transform e n t i r e domains of knowledge production. A hi s t o r y seeks to reproduce and interpret concrete events as they a c t u a l l y occurred i n time. Historians create description of the past to e s t a b l i s h and challenge as well as protect and contest hegemonic d e f i n i t i o n s of history. Historians adhere to three basic p r i n c i p l e s . The f i r s t p r i n c i p l e holds that s o c i a l c o n s t r u c t i o n i s t s ' i n t e r p r e t a t i o n s of the h i s t o r y of disease and medical practice deny that 48 knowledge i n the b i o l o g i c a l sciences can be independent of i t s s o c i a l context. Second, his t o r i a n s are s k e p t i c a l of h i s t o r i c i s m . The t h i r d p r i n c i p l e i s wariness about presentism which d i s t o r t s the past from our own contemporary viewpoint. Historians are faced with several methodological problems. Often h i s t o r i e s tend to be narratives that are loosely formulated and i n t u i t i v e . The themes, d e f i n i t i o n s of narrative, and the defining structures of the s t o r i e s and conclusions are defined p o e t i c a l l y and are quite context bound. Representation i s also as problematic as narrative. The analysis often takes the perspective of the t e l l e r . Poststrueturalism holds that s t r u c t u r a l i s t interpretations are deterministic, foreclosing the multiple p o s s i b i l i t i e s f o r meaning that d i f f e r e n t l y located h i s t o r i c a l subjects may make. Thus, poststructural modes of discourse analysis aims to both describe and explain not only the i n s t i t u t i o n s , but the power linkages among people and those i n s t i t u t i o n s . The texts u t i l i z e d i n t h i s study must be understood as active constituents of s o c i a l r e l a t i o n s and s o c i a l courses of actions rather as indices of AIDS. By i n s i s t i n g on the m a t e r i a l i t y of the texts, the study reveals how the actual ways i n which s o c i a l r e l a t i o n s about AIDS prevention education are organized and how they operate. By doing so, the study also reveals how AIDS prevention education i s constructed, delivered, and implemented. 49 CHAPTER FOUR: A HISTORY OF AIDS PREVENTION EDUCATION IN VANCOUVER. 1983-1994 In t h i s chapter, AIDS Vancouver's prevention education programs between 1983 and 1994 are discussed. Materials used i n t h i s chapter include personal journals, AIDS Vancouver's newsletters, minutes from meetings, annual reports, and p o l i c y documents. I contextualized AIDS prevention education i n Vancouver v i s a v i s AIDS p o l i c y i n B r i t i s h Columbia and AIDS awareness programs i n the province. Adhering to concepts i n the previous chapter, I reveal that gay men have, fo r the most part, constructed, delivered, and implemented the AIDS prevention education programs i n Vancouver between 1983 and 1994. Furthermore, the h i s t o r y of AIDS i n Vancouver does not coincide with e x i s t i n g h i s t o r i e s of AIDS as suggested elsewhere by Mann (1992a) and Rayside and Linguist (1992). The years from 1983 to 1986 were a time when AIDS was seen as a new and p o t e n t i a l l y epidemic disease, when AIDS prevention education was an open p o l i c y area. This period saw the outbreak of the disease i n the gay community, the development of public alarm and s o c i a l stigmatization, and the lack of s c i e n t i f i c c e rtainty about the disease. On the p o l i c y side, there was r e l a t i v e l y l i t t l e o f f i c i a l action by various l e v e l s of government, but behind the scenes considerable openness to new p o l i c y actors and the establishment of new p o l i c y community around AIDS. This was a period of development from below. I t was succeeded i n 1987 by a stage of emergency i n which p r o v i n c i a l and c i v i c servants and p o l i t i c i a n s intervened. A high-level p o l i t i c a l response emerged. From 1992 on, these two phases have been followed by a t h i r d , the current period of slow normalization of the disease, i n which the rate of growth of the epidemic has slowed and public i n t e r e s t and panic markedly decreased. O f f i c i a l i n s t i t u t i o n s have been established and formal procedures adopted and reviewed; paid professionals have replaced the e a r l i e r volunteers. The high l e v e l p o l i t i c a l response has gone; the problem now i s to maintain the salience of AIDS on the p o l i c y agenda. The F i r s t Era: New Beginnings. 1983-1987 B r i t i s h Columbia was governed by the conservative S o c i a l Credit party from the mid-1980s to 1992. The government was led by men who were determined to distance themselves as much as possible from i n i t i a t i v e s that could be construed as supporting a gay l i f e - s t y l e or sex education (Rayside & Linguist, 1992). Before public o f f i c i a l s and health departments r e a l i z e d there was a "problem," a group of gay men i n Vancouver recognized that friends and lovers were dying and i f something was going to be done to change the s i t u a t i o n , i t would have to be led by "gay a c t i v i s t s . " Mass media i n Vancouver had reported that gay men i n San Francisco, Los Angeles, and New York were dying from a strange i l l n e s s (Rayside & Linguist, 1992). Many people i n Vancouver's gay community were beginning to panic because the new disease was perceived and talked about as a plague. In the spring of 1983, some gay men with the support of some medical p r a c t i t i o n e r s created the country's f i r s t 51 community-based AIDS service and education organization, AIDS Vancouver 1. The agency's education department was started i n the same year. A couple of people were responsible f o r organizing and t r a i n i n g the volunteers needed to s t a f f a hot l i n e which provided gay men with information about the new medical c r i s i s . At the time, AIDS Vancouver's hot l i n e was the only l o c a l source of up-to date information about AIDS. Most of the information found i n the hot l i n e volunteers' manua1, A l l Sexually Active Men Should Know These Facts! which was adapted from the New York Native, concerned symptoms associated with the disease such as swollen glands, pink to purple f l a t or raised blotches or bumps, weight loss, fever, night sweats, cough, and diarrhea (AIDS Vancouver, 1983). The hotline operated out of the Gay and Lesbian Centre on Bute Street i n the heart of the West End, a neighbourhood with a higher concentration of gays and lesbians than other locales i n the Lower Mainland. The loc a t i o n also enabled the volunteers to conduct information sessions with people who were dropping i n to the Centre. I t i s important to emphasize that at the time of the establishment of the hotline,, these men were working with l i t t l e s c i e n t i f i c " information about the disease. In fact, they d i d not know pr e c i s e l y how the v i r u s was transmitted, nor d i d they have a cle a r sense of how to define which sexual a c t i v i t i e s were safer and which were not. Personal 1. In addition to AIDS prevention education, AIDS Vancouver i s involved i n advocacy issues. The organization o f f e r s support services for PWAs and s o l i c i t s funding f o r research and operational expenses. 52 journals reveal that there was speculation about the disease within the gay community (PT, 1983; JM, 1983). "Peter," a gay man and an AIDS educator i n Vancouver, stated i n h i s journal: I am concerned that some people i n the gay community are unnecessarily stereotyping leathermen. Even though i t i s true that the leather community i s disportionately f a l l i n g i l l , there i s no evidence suggesting that leather a c t i v i t i e s are contributing to AIDS. (PT, 1983) John, also a gay educator i n AIDS Vancouver wrote i n h i s j ournal: I am frustrated today, j u s t so many "theories" about why and who gets t h i s disease. E s p e c i a l l y comments about so and so's t r i c k i n g habits. The bottom l i n e no one person knows. I f I hear another judgmental statement about a person's sexual behaviour, I think I am going to scream. (JM, 1983) Some men believed that complete sexual abstinence was the only way to avoid i n f e c t i o n ; others debated r e l a t i v e r i s k of various sexual behaviours. Many people i n the gay community were making educated guesses on the basis of l i t t l e data about the course of the epidemic. This suggests that plague-making and denial were simultaneously occurring within the community. The f i r s t newsletter, t i t l e d , AIDS Vancouver: Fighting Fear and Confusion, reveals that the educators at AIDS Vancouver were profoundly concerned that the lack of knowledge about the disease would further endanger an already panicked community: Therefore: u n t i l we know better, i t makes sense that the fewer d i f f e r e n t people you come i n sexual contact with the less chance t h i s possibly contagious bug has to t r a v e l around. Have as much sex as you want, but with fewer people and with healthy people, I f don't know whether your partner i s healthy - ask him d i r e c t l y to be honest with you about h i s health. (AIDS Vancouver, Spring, 1983) This statement i s problematic because of intimacy issues surrounding sexual behaviour and the notion of contagion embedded i n the word "bug." The media was r e i n f o r c i n g the notion of gay plague (Rayside & Linguist, 1992). The personal journals also attest to t h i s concern. Equally problematic were the developments i n the United States, namely the c a l l for quarantine l e g i s l a t i o n and the r e f u s a l by some physicians to t r e a t dying gay men. These developments were given attention here i n B r i t i s h Columbia. Given the concerns facing Vancouver's gay community, AIDS Vancouver i n i t s f i r s t newsletter announced i t would be holding i t s f i r s t p ublic forum i n March of 1983 which was sponsored by the Zodiacs, a gay leather f r a t e r n i t y (AIDS Vancouver, 1983). In the f a l l of 1983, AIDS Vancouver published i t s second newsletter, t i t l e d Who We Are and What This Is. This newsletter was d i s t r i b u t e d i n various gay bars and other businesses. A major challenge facing the organization i s revealed i n the following newsletter excerpt: As a group of volunteers i n a non-profit society, we i n AIDS Vancouver are not p r a c t i s i n g medicine or p o l i t i c s . We are not victims of any conspiracy, and the medical establishment and media are hardly ignoring us. Everything that can be done i s , on the whole, being done. I t i s up to us however, to inform ourselves and to defend our sexual freedoms. What you choose to do about t h i s problem i s your decision. We can help each other, e s p e c i a l l y those of us who may be i l l or may become i l l . (AIDS Vancouver, F a l l , 1983) There i s no mention of AIDS i n the annual reports of the Ministry of Health for the province of B r i t i s h Columbia and 54 the c i t y of Vancouver during 1983. This reveals that AIDS was not yet perceived by the governments as a health issue facing the general population. However, the public was informed of AIDS by the media. During 1984, AIDS Vancouver published a newsletter t i t l e d When a Friend Has AIDS which was funded by the C i t y of Vancouver and the Health Promotion Directorate, Western Region, Health and Welfare Canada. The newsletter was based on materials available from the Gay Men's Health C r i s i s which was and s t i l l i s New York City's AIDS organization. Some of the statements i n the newsletter address the a l i e n a t i o n which PWAs were experiencing: "touch him, A simple squeeze of the hand or a hug can l e t him know that you s t i l l care. You can not contract AIDS by simply touching" and "Don't allow him to become i s o l a t e d " (AIDS Vancouver, 1984). More importantly, i t i s stated i n the document that "AIDS i s everyone's challenge" (AIDS Vancouver, 1984). In 1984, AIDS Vancouver renamed and revised i t s h o t l i n e manual. The manual became known as What are the Symptoms of Immune Deficiency. The information became much more d e t a i l e d as well as c l i n i c a l : There are no c e r t a i n treatments at the present time....Among the experimental agents and techniques, interferon, immunomodulators such interleuken-2, and plasmapheresis have attracted the most attention. Interferon, which e x i s t s i n many forms, i s known to have a n t i v i r a l properties and has shown promise i n the treatment of some forms of cancer. (AIDS Vancouver, 1984) Diagnostic t e s t i n g was also addressed i n the manual: 55 At the present time, there are several routine, inexpensive laboratory tests that may ei t h e r strengthen or help to rul e out a diagnosis of immune deficiency. These include white blood c e l l and lymphocyte counts, both of which are often low i n victims of immune deficiency and skin t e s t i n g with r e c a l l antigens....when immune deficiency i s strongly suspected, the diagnosis may be confirmed by several lab tests that are not routinely a v a i l a b l e . (AIDS Vancouver, 1984) A type-written document, t i t l e d A Risk Reduction Guide For AIDS, reveals that as soon as i t was reasonably c l e a r that HIV was transmitted sexually, AIDS Vancouver's education s t a f f and volunteers borrowed safer sex guidelines and i n s t r u c t i o n a l forums developed i n the United States i n order to get the word out to gay men i n Vancouver (AIDS Vancouver, Spring, 1985) i The guidelines centered around high r i s k , moderate r i s k , and low r i s k a c t i v i t i e s . The document, A Risk Reduction Guide for AIDS also defined what health i s : Health means much more than the absence and avoidance of disease. I t i s the human condition i n which the physical, mental and s p i r i t u a l needs of a person are i n balance. Healthful sexual behaviour i s an expression of one's natural sex drives i n s a t i s f y i n g , disease-free ways. Guarding your health and respecting the health of your sexual partners means,, for one thing, being aware of your body and the messages i t may be givin g to you. (AIDS Vancouver, Spring, 1985) Members of a c u l t u r a l community may discuss sex and health issues with each other or may r e l y on people outside the group f o r information. I t i s a rule of thumb i n health education, f o r example., that women tend to get health information from one another, while heterosexual men tend to get information from the women i n t h e i r l i v e s (Fauci, 1991; Mann, 1992b). Identifying the key sources of information, whether they are community groups, magazines, and 56 newspapers, or members of the same c u l t u r a l group i s e s s e n t i a l so that the educational e f f o r t can meet people i n the places where they expect information exchange to take place. AIDS Vancouver was t r y i n g to use "heterosexual" norms to educate the gay community. From 1984 to 1987, hundreds of men i n Vancouver attended risk-reduction programs i n bars, lectures h a l l s , clubs, l i b r a r i e s , and community centres. They learned about the programs from friends and neighbours, from f l i e r s handed out i n gay bars, bathhouses, and other clubs, from gay newsletters and advertisements i n l o c a l newspapers. Dedicated volunteers prepared the advertising, f a c i l i t a t e d the workshops, and shared every piece of information they could glean from medical journals and the community grapevine. Funding was supplied by donations from friends and volunteers, from benefit p a r t i e s , and from donation cans that sat next to cash r e g i s t e r s i n bars, restaurants, and other businesses. Even though the e f f o r t s of AIDS Vancouver were being supported by the gay community, great concern was expressed that some people i n the gay community did not support the e f f o r t s of AIDS Vancouver. One board member during a board meeting stated that "we need to help lobby f o r support for AIDS services within the community as well as the C i t y Council f o r assistance" (AIDS Vancouver, January, 1985). Many men i n the gay community were denying the p o s s i b i l i t y that they might be infected with the v i r u s and wanted to dis s o c i a t e themselves from both the organization and the 57 disease. Moreover, many men i n the gay community perceived AIDS Vancouver as a s i t e of r a d i c a l gay p o l i t i c s and wanted no association with such an organization. They perceived themselves as members of society and not the "gay" community. In 1985, as the number of AIDS cases rose dramatically, St. Paul's Hospital, a hospital located close to the c i t y ' s West End which has a large gay population, decided to make the i n s t i t u t i o n a "Center f o r Excellence" i n the treatment of AIDS. The hospital formed an i n t e r d i s c i p l i n a r y team of about t h i r t y general p r a c t i t i o n e r s , nurses, s p e c i a l i s t s , and s o c i a l workers. The inpatient services of the h o s p i t a l and a provincially-funded outpatient c l i n i c eventually found i t s e l f t r e a t i n g 90 percent of the province's AIDS cases, o f f e r i n g more integrated and coherent h o s p i t a l care than was av a i l a b l e anywhere i n Canada (Rayside & Linguist, 1992; Brown, 1995). During the same year, B r i t i s h Columbia became the f i r s t province to o f f e r free t e s t i n g and counselling throughout the province, and although doctors or c l i n i c nurses were to keep track of the names of patients being tested f o r HIV, there was no requirement for further r e g i s t e r i n g of names. A sp e c i a l AIDS t e s t i n g and counselling c l i n i c was established by the health ministry i n Vancouver. There patients could e a s i l y supply pseudonyms to doctors or c l i n i c s , and so could have de facto anonymous te s t s (Rayside & Lindquist, 1992). Minutes from a board meeting reveals that t h i s system was i n s t a l l e d a f t e r AIDS Vancouver 58 representatives convinced, public health o f f i c i a l s that no one would show up for t e s t i n g at a c l i n i c where names would be on f i l e (AIDS Vancouver, March 1985). I m p l i c i t i n the discussions between the government and AIDS Vancouver was the d i s t r u s t of the government. Many gay men perceived that by undergoing t e s t i n g , they would v o l u n t a r i l y be placing themselves on a "quarantine" l i s t . The f i r s t group i n Canada to organize people l i v i n g with AIDS was Vancouver's Persons With AIDS C o a l i t i o n , formed i n early 1986 as a breakaway from AIDS Vancouver. The PWA C o a l i t i o n broke away from AIDS Vancouver because i t s members f e l t AIDS Vancouver was not securing funding for new drugs and human ri g h t s protection for PWAs. The new organization grew quickly and developed a c r i t i c a l p o l i t i c a l p r o f i l e . I t forced the federal Health and Welfare Department to release AZT, an AIDS drug, by threatening to smuggle supplies of the drug from the United States (Rayside & Linguist., 1992). In June of 1986, AIDS Vancouver relocated to a new s i t e , west of Burrard Street on Davie Street. In the same month, the organization announced i n a newsletter, the AIDS Vancouver Health Promotion Project t i t l e d An Introduction to AIDS Vancouver: The "AIDS/ARC: Public Awareness and Support" project i s funded by the federal and c i t y governments f o r two years from July 1985 to Ju l y 1987. The $250,000 grant provides for three s t a f f members, an o f f i c e , and s p e c i f i c projects i n the areas of information and education, support services, and networking. Two other s t a f f members have been hired under federal employment assistance programs. (AIDS Vancouver, June 1986) 59 The Annual Report of the Medical Health O f f i c e r of the c i t y of Vancouver (1986) makes no mention of the funding f o r AIDS Vancouver. I t i s possible that the governments had hoped AIDS could be contained by the gay community. The same report addressed AIDS: In 1986, the world woke up to fact that AIDS was not j u s t a gay disease, but could also i n f e c t the heterosexual community. Despite numerous media s t o r i e s on AIDS, no coordinated AIDS education program was undertaken by the various l e v e l s of Canadian Governments, (p.l) The report continued: As anticipated, AIDS continued i t s rapid r i s e with 102 cases diagnosed during the year (Up from 8 cases i n 1983 and double from 1985). With the absence of e f f e c t i v e or therapeutic measures, education remains the sole a c t i v i t y available to control the spread of t h i s v i r a l i n f e c t i o n . There i s a need for major education e f f o r t s to be directed towards persons at poten t i a l r i s k such as teenagers, prostitutes and drug addicts, (p. 14) The C i t y of Vancouver made plans f o r the creation of a small project group to develop AIDS education packages, nursing assessment tools and treatment guidelines, and education material for caregivers to AIDS victims. The c i t y also received funding from the Ministry of Health to o f f s e t the cost of providing Home Care services p r i m a r i l y to AIDS patients i n the West End. Approximately 30 patients were c l i e n t s of the Home Care Program. Health o f f i c i a l s also encouraged the Vancouver School Board to develop AIDS programs fo r grade 12 students (p.5). The government s t i l l had not developed a curriculum for students i n the province. In t h i s early phase (1983-1986), the novelty and shock of a l i f e - t h r e a t e n i n g infectious disease of p o t e n t i a l l y 60 epidemic proportions i n the la t e 20th century r a p i d l y led to a search f o r explanatory models with some degree of pr e d i c t i v e power. There were no established departmental, l o c a l , or health authority mechanisms i n which AIDS p o l i c y could be encompassed. There were no established expert advisory mechanisms that could deal with AIDS; i n fact, there were no experts. There was no preexisting p o l i c y community around AIDS. This period i l l u s t r a t e s c l e a r l y how a community developed around the disease, how gay a c t i v i s t s , c l i n i c i a n s , and s c i e n t i s t s coalesced and consorted, and how formal l i n k s between the various government health departments and AIDS Vancouver were noticeably absent. The Second Era: Local I n i t i a t i v e s . 1987-1992 Most current interpretations of p o l i c y reactions to the epidemic have focused on AIDS policymaking as a top-down process, whereby government reacted i n t r a d i t i o n a l l y consensual ways, sending signals about appropriate reactions into the public domain. But, i n the e a r l i e r period of reaction, p o l i c y was formed i n a rather d i f f e r e n t way, i n a bottom-up rather than a top-down way, with a volunteer rather than an o f f i c i a l ethos. Between 1987-1992, gay men continued to be part of the emergent public p o l i c y lobby around AIDS. Another part of that p o l i c y lobby was also forming about the same time. C l i n i c a l and s c i e n t i f i c expertise on AIDS was also i n the process of being established and i n s t i t u t i o n a l i z e d . The question of po t e n t i a l and actual heterosexual spread of the disease or threat to the population at large was the issue 61 that united the AIDS p o l i c y community. As well as external l i n k s , the Ministry of Health and the Health Department of the c i t y of Vancouver developed i t s own i n t e r n a l p o l i c y machinery on AIDS. The p o l i c y l i n e s that most c l e a r l y united the community were a stress on the need f o r urgent action and the need for public education to stress the heterosexual nature of the disease rather than the "gay plague" angle of the popular press. An external p o l i c y review was commissioned by AIDS Vancouver to help i d e n t i f y what kinds of services and educational programs were needed because of the s i g n i f i c a n t increase i n the number of PWAs. The review t i t l e d Evaluation of Support Services (1987) by Judy Krueekl, a U.B.C. professor of s o c i a l work, suggests that "common sense and a commitment to community empowerment led AIDS Vancouver to adopt a health education strategy that was at once p r a c t i c a l , c l o s e l y focused, and rooted i n community values, organization, and p o l i t i c s " (p.13). As educational programs were being assessed and developed: Gay men shared t h e i r perceptions of what they f e l t i s needed for themselves and other gay men i n Vancouver - responses grounded i n t h e i r experience of the community as i t copes with a major health c r i s i s over time. (Krueekl, 1987, p. 13) The same p o l i c y review document revealed that AIDS Vancouver's c l i e n t s were s a t i s f i e d with the organization's educational programs which disseminated information about AIDS through the hotline, speakers bureau, a l i b r a r y , forums, and information pamphlets. However, the document also revealed that: no s i g n i f i c a n t gaps i n services were i d e n t i f i e d . The reason f o r t h i s could well be that the target population receiving the services many be a f r a i d to c r i t i c i z e the only e x i s t i n g comprehensive program f o r persons with AIDS i n Vancouver. (Krueckl, 1987, p. 16) The document does not reveal that many PWAs were l i v i n g below the poverty l i n e and most were r e l y i n g on the s o c i a l support of friends. PWAs were also being rejected by t h e i r own f a m i l i e s . The personal journals suggest that some members of the gay community i n s i s t e d upon "safer sex" rather than celibacy (PT, 1987; JM, 1987). Peter, an AIDS educator, stated i n h i s journal: There appears to be a small group of seronegatives who continue to practice very high r i s k a c t i v i t i e s . Most of the fellows when I'm t a l k i n g to them, and s t i l l t a l k about meeting somebody, they're a l l t a l k i n g safe sex, they're t a l k i n g condoms. (PT, 1987) Nevertheless, the 1987 external review by Judy Krueckl stated that: the high r i s k group i n question i s not as informed as they ought to be. I t could be that several members of t h i s population are using a form of denial which prevents them from a l t e r i n g t h e i r present l i f e s t y l e , (p. 16) Risk behaviour had changed l i t t l e from 1987 to 1989. According to Rick Marchand, a gay man and an educator from OISE: People acknowledge that unsafe sex i s going on - they see i t , they hear about i t , they p a r t i c i p a t e i n i t , although they may not l i k e to t a l k much about i t . But the overwhelming sense of the gay community i s that change has been taking place - gay men are adopting responsible sexual behaviours and as a r e s u l t community l i f e i s d i f f e r e n t from a decade ago. But personal change, even within a community that s t r i v e s for s o c i a l change i s a d i f f i c u l t process. (Marchand, 1989, p.54) 63 Marchand's 1989 evaluation, Fighting AIDS With Education: Report of the Gay Community Needs Assessment which was commissioned by AIDS Vancouver to assess the education needs of the gay community, also i d e n t i f i e d that gay men wanted more sophisticated and p o s i t i v e messages to help them deal with the complex issues around sustaining changes i n sexual behaviours. The two most s i g n i f i c a n t recommendations of h i s report were: Continue basic information on HIV transmission and prevention to the gay community, a range of materials to go out i n various ways. The challenge i s to be innovative and responsive to the community. The shelf l i f e of messages i s short but v i g i l a n c e must be continuous. S p e c i f i c a l l y , t h i s means: d i s t r i b u t i n g condoms, safer sex cards, pamphlets to the community; running poster campaigns, and promoting resource centres and l i b r a r i e s of AIDS information to the gay population. (Marchand, 1989, p. 7) and Outreach programs must be developed to several groups within the gay community. AIDS educators need to ensure the entire community i s receiving appropriate educational materials. A long term strategy for education of gay men must include campaigns that can address a spectrum of needs around HIV issues and have a c l e a r p o s i t i v e message. (Marchand, 1989, p. 8) These recommendations were accepted by the board of d i r e c t o r s . S t a f f members then interviewed f a c i l i t a t o r s on the kinds of questions asked during information programs. The content of hot l i n e c a l l s were recorded and analyzed regularly. Staff and volunteers observed programs i n order to discern more f u l l y the group dynamics and patterns of i n t e r a c t i o n . These responses, observations, and analyses 64 became the raw materials from which new education programs were constructed. Marchand's 1989 report stated: data was [sic] c o l l e c t e d i n a number ways. A community-wide survey was run. Confidential interviews with selected members of the gay and bisexual male population, as well as with selected and experienced professionals such as physicians, therapists, s o c i a l workers and researchers working with gay and bisexual men. Meetings and discussions were held with AIDS educational organizations. Observations were made of evidence of AIDS education i n Vancouver. Observations were made about how gay and bisexual men talked about AIDS and safer sex i n everyday l i f e . L i t e r a t u r e on needs assessment, behavioural change and AIDS educational programs was reviewed, (p. 16) Minutes from a board meeting also reveal that AIDS Vancouver decided to use both c l i n i c a l language and sexually e x p l i c i t v i s u a l material to get the widest possible message across (AIDS Vancouver, July 1989). There was no discussion, however, i f some board members or educators were offended by the use of sexually e x p l i c i t v i s u a l material. Much of the sexually e x p l i c i t materials would not have been displayed i n "public" places, e s p e c i a l l y where children would be. According to Marchand (1989), no m u l t i c u l t u r a l education existed i n Vancouver and there was room fo r involvement by an organization l i k e AIDS Vancouver to a s s i s t community organizations i n putting together more comprehensive programs for r a c i a l and ethnic groups (p. 87). He stated: AIDS educators i n community-based organizations and government health programs must work more c l o s e l y within the gay culture i n developing education services....Educators must be responsive to the gay populations needs and keep themselves informed through ongoing community research and involvement. (AIDS Vancouver, 1989, p. 95) 65 Nevertheless "culture" as a construct lacks homogeneity i n l a b e l s such as Latino, Asian, F i r s t Nations, or other r e i f i e d categories of race or e t h n i c i t y i n Canada. Culture i s not viewed as a monolithic term. Rather there are many va r i a t i o n s on the underlying theme of culture. An i n d i v i d u a l might be a working-class Asian male l i v i n g i n a m u l t i c u l t u r a l neighbourhood. I t i s extremely d i f f i c u l t to i d e n t i f y the separate influence of each of these c u l t u r a l elements. The term culture, for AIDS Vancouver, then, collapses what others see as demographic variables, such as age, race, r e l i g i o n , ethnic heritage, socioeconomic status, and gender into one c o n s t e l l a t i o n , that for each i n d i v i d u a l would be somewhat i d i o s y n c r a t i c . This suggests that the prevention education strategies do not begin to acknowledge that people at r i s k for HIV i n f e c t i o n do not come i n the d i s c r e t e packages suggested by the o r i g i n a l epidemiological formulation of r i s k groups or the target audience. AIDS Vancouver redesigned i t s educational programs over the next year. In addition to premising the educational strategy on culture, AIDS Vancouver's educational s t a f f t r i e d to answer several questions. AIDS Vancouver attempted to get a picture of the informal rules around sexual behaviour and drug use, the rules that communicate the values and b e l i e f s held by members of the community. Some of the questions that they asked are found i n the F a l l 1989 B.C. Persons with AIDS newsletter: Is r i s k behaviour hidden or open? Is r i s k behaviour valued? Does the group consider i t s e l f a group? Who are leaders and r o l e models within the culture? Where does the group get information about sex and health? What kind of sex t a l k takes place within the group? What are the p o s i t i v e i d e n t i t i e s available to the group? What does the group know now? (p.8) Moreover, the organization recognized the r i s k of AIDS i n young people. The Spring 1990 B. C. Persons with AIDS Newsletter addresses t h i s concern: How serious a r i s k i s AIDS for young people. We know that HIV can i n f e c t anyone young or old as behaviour exposes them to the v i r u s . Adolescence can be a period of profound physical and psychological change and behavioural experimentation....Young people need to be aware of the possible consequences of unprotected sexual intercourse and experimentation with drugs. They may s u f f e r without t h i s awareness, (p.3) The a r t i c l e warned the problem may be s i g n i f i c a n t : C u l t u r a l t r a d i t i o n , fears or other b a r r i e r s may prevent young people from learning about sexual transmission and other modes of transmission or from acting on what they have. Parents and community leaders may not support communication about sexual matters because they may not wish to acknowledge that many young people are already sexually active. In areas where there are no c u l t u r a l b a r r i e r s to frank discussion, health promotion programs which address sexuality many not e x i s t because of the lack of resources or because r i s k i s not perceived, (p.3) In the f a l l of 1990, AIDS Vancouver launched a new i n i t i a t i v e for gay men e n t i t l e d the "Man-to-Man" program. I t had several key components. The "Rubberware Home Parti e s " were described as casual, fun, and i n t e r a c t i v e evening sessions on HIV prevention and education. They took place i s l i v i n g rooms around the Lower Mainland. "Operation Latex Shield" was the newest area of the "Man- to-Man" program. I t involved outreach i n public sex environments. Volunteers offered condoms, free of charge, and on the spot counselling. The d i r e c t o r of the "Man-to- Man" program, Christopher Koth, noted that "not everyone 67 seemed open to the experience" (AIDS Vancouver, Contact F a l l 1990, p.6). He stated that: This i s O.K. i n our minds, t h i s workshop i s guaranteed to provoke a l l sorts of reactions and perspectives, a l l of which are v a l i d . One i n d i v i d u a l raised an i n t e r e s t i n g point when he i n s i s t e d that to use the term negotiation was inappropriate. There should be no room for negotiating where l i f e and death are concerned. Another i n d i v i d u a l would l i k e us to have focussed more upon the emotional and not the physical issues involved with transmission. (Koth, 1990, p. 6) As a r e s u l t of t h i s observation, AIDS Vancouver developed a program to t r a i n more volunteers to back up emotional support systems. However, the forms of male sexuality related to AIDS transmission are c e r t a i n l y not r e s t r i c t e d to gay men; they are forms of male sexuality that have long been celebrated and promoted. In other words, they are c u l t u r a l l y created and reproduced i n ideas of hegemonic masculinity, c h i l d - r e a r i n g patterns, and the constant s e l l i n g of sex as a commodity. Society i s also only beginning to come to terms with the hidden world of bisexual men i n heterosexual marriages who are i n v i s i b l e to most AIDS programs, yet are c r u c i a l l y important for disease transmission p r e c i s e l y because of the l e v e l s of secrecy involved. I t was also important to consider the needs of those men who have sex with other men, but do not view themselves as part of the gay ("Eurocanadian") community. AIDS Vancouver was concerned about news coverage of AIDS. In the F a l l 1990 issue of Contact, Cindy Letts, a volunteer, wrote: 68 Recently, AIDS has been regulated to second-string status i n favour of environmental issues. Pa r t l y because they are easier to cover, no longer do the information lords have to grapple with such burning issues as, "Can we say sperm on TV?" Environmentalism i s safe: the language i s inoffensive and the issues cosy and p o l i t i c a l l y comfortable. No fear here of anyone being offended i f the top i c of the day i s recycling, rather than teaching your youngster about AIDS prevention guidelines. I don't d i s c r e d i t the environmental movement as unworthy of i n t e r e s t ; what concerns me i s that the media have become di s i n t e r e s t e d i n AIDS. (p.70) In the Spring 1991 issue of Contact. Rick Marchand stated that "homophobia continues to be the greatest obstacle to d e l i v e r i n g comprehensive AIDS prevention education i n Canada" (p. 13). He went further by saying: Homophobia i s the fear of hatred of homosexuals and homosexuals feel i n g s . Probably a more accurate word to help us describe the oppression that i s experienced by gay and lesbian people i s heterosexism. Our sexual and c u l t u r a l mores ensure that heterosexuality i s valued and preferred, while other s e x u a l i t i e s are excluded, silenced, and hidden, (p. 13) Minutes of a board meeting i n May 1991 revealed that a board member maintained "many s t i l l believe that AIDS i s a gay disease. At the same time, as a society we s t i l l haven't acknowledged the devastating e f f e c t AIDS has had on gay men." This i s s t i l l an issue i n the gay community today; how many deaths does i t take to l e g i t i m i z e a culture within society? During 1991, AIDS Vancouver established Info Centres i n 20 locations throughout the gay community/ allowing t h e i r p r i n t material to be more r e a d i l y a v a i l a b l e (Williams, Contact, Spring 1991, p. 5). Education Services and other departments at AIDS Vancouver pa r t i c i p a t e d i n a number of 69 public awareness events (p. 5). These included World AIDS Days, the Gay Pride F e s t i v a l , and the "newly established AIDS Awareness Week" (p. 5). As well, "AIDS Vancouver also organized and p a r t i c i p a t e d i n community forums, and set up information booths at locations ranging from west side shopping malls to West End night clubs" (p. 5). The Helpline continued to be a major source of information and support. With a pool of 80 volunteers, the Helpline operated 63 hours a week. On average the Helpline handled 1,000 c a l l s a month (P- 5). In AIDS Vancouver's 1992 Annual Report. Rick Marchand says: AIDS Vancouver has special challenges i n t h i s region of the country. Vancouver has the highest per capita rate of AIDS i n Canada. Years of S o c i a l Credit government have helped to maintain the wall of denial that e x i s t s i n the corporate world and i n B. C.'s workplaces, central arenas i n the development of supportive environments for persons l i v i n g with HIV. (p. 1) Despite f i n a n c i a l challenges the organization launched a new educational campaign. A March 1992 newsletter t i t l e d "AIDS Vancouver's Man-to-Man Program Launches New Education Campaign," read "Gay, Bisexual, Or Straight - I t doesn't Matter Who We Are. We a l l have Choices, Safer Choices - Safer Choices for L i f e . " Christopher Koth, a gay man and the new d i r e c t o r of the new program, maintained i t was chosen to emphasize personal r e s p o n s i b i l i t y i n sexual behaviour. Koth believed that the program was precedent-setting because " t h i s i s the f i r s t time, that I'm aware of, when an AIDS education campaign i n the c i t y has spoken so d i r e c t l y to the Gay and Bisexual community." Koth also was quoted saying 70 that "No apology i s made to those who might think t h i s i s unnecessary or not broad enough i n i t s approach. Gay and Bisexual men, as with a l l people, deserve to receive d i r e c t information which gives them options and ultimately, save l i v e s . " Koth indicated that there were s t i l l no complementary educational strategies within the province. The f a l l 1992 issue of Contact revealed that "the education s t a f f [.at AIDS Vancouver] i s now comprised [sic] of professionals with the s k i l l s to employ both q u a l i t a t i v e and more formal quantitative methods of assessment" (p. 3). AIDS Vancouver was s t i l l employing structured observations of the audience. According to a volunteer i n the f a l l 1992 newsletter, The Volunteer Voice, women would frequently take f i r s t a brochure with a t i t l e directed to gay men because i t was more c o l o u r f u l than the brochure with "women" i n i t s t i t l e . Moreover, re c i p i e n t s of information were observed to skim through brochures i n no p a r t i c u l a r order rather than reading from beginning to end. As a r e s u l t of t h i s information, the most c r i t i c a l introductory brochure, which was designed to acquaint a more broad audience with HIV and r i s k reduction, was redesigned to be more co l o u r f u l than the other publications competing for the audience's attention. I t was also rewritten into a modular s t y l e , with p a r t i c u l a r l y important information highlighted, so that the r e c i p i e n t could get a meaningful amount of information from skimming the text and small units of type could be read i n any order and s t i l l make a coherent educational message. 71 Educators at AIDS Vancouver have often struggled with designs that they were convinced should work but j u s t d i d not. Minutes from a board meeting i n August 1992 reveal that the educational s t a f f have regarded evaluators as people who s p l i t h a i r s i n order to make t h e i r jobs more d i f f i c u l t rather than as teammates who were working toward the same ends. In short, being open to changes i s easier said than done. Knowing from the outset that r e v i s i o n i s both necessary and ine v i t a b l e helps make the process easier. In AIDS Vancouver's experience, however, the best remedy fo r t h i s brand of t e r r i t o r i a l i t y has been the active involvement i n program design and execution by members of the target community (Personal journals, PT, 1992; JM, 1992). According to minutes from a December 1992 board meeting, t h i s involvement has helped program s t a f f and volunteers recognize that a successful program ultimately must belong to the community i t serves, rather than to i t s inventors and f a c i l i t a t o r s . The personal journals a t t e s t to the f a c t that AIDS Vancouver understands i t s e l f to be accountable to the people i t serves (JM, 1989; PT, 1992). However, accountability within the organization was an issue. In the August 1992 The Volunteer Voice newsletter, David Ross, a volunteer and a professor of hi s t o r y at S.F.U. said: While nothing can now be done about the way i n which the h i r i n g committee has chosen i t s method of procedure, i t i s necessary to restore and i n s p i r e confidence i n the working of the system....what i s needed i s a r e v i s i o n of appointments guidelines and an undertaking of due procedure. (p.10) 72 Another l e t t e r addressed to Mark Mees who was at the time the d i r e c t o r of AIDS Vancouver i s more revealing with regards to accountability within the organization and i t s accountability to society. Nancy Illman, a volunteer, lamented i n the August 1992 The Volunteer Voice; Unfortunately, I believe that there i s f a r too much high-school g i r l s ' washroom behaviour being indulged by the gay community s p e c i f i c a l l y , and that i t i s t h i s unfortunate behaviour which has created most of the tension surrounding personnel changes. Some people have chosen to l i v e t h e i r l i v e s by pickings sides and l i n i n g up to take cheap shots at the other side. (AIDS Vancouver, p. 11) As a r e s u l t of the c r i t i c i s m s , AIDS Vancouver i n the f a l l of 1992 published a p o l i c y statement, t i t l e d Organizational P o l i c i e s . Furthermore, an "Ethics Committee" was established to " a s s i s t us i n serving as a p r a c t i c a l guide f o r professional behaviour and the maintenance of a reasonable standard of practice within a given c u l t u r a l context" (AIDS Vancouver, The Volunteer Voice. F a l l 1992). I m p l i c i t i n the c r i t i c i s m s and the establishment of the committee was the concern over the practice of patronage. AIDS Vancouver was not h i r i n g professionals outside the gay community. As Dr. John Blatherwick, i n h i s Annual Report of Medical Health O f f i c e r of the City of Vancouver (1987), stated: In 1987, the public health arena was dominated by AIDS...The disease i n the City of Vancouver continued to be reported predominantly i n the gay population. In t h i s group, there were indicators that the spread of the AIDS vi r u s had been greatly reduced. In 1987, there were 120 c l i n i c a l cases of AIDS i n B r i t i s h Columbia, an increase of 16 cases from 1986. AIDS cases did not reach 200 cases i n 1987, a number predicted by many. Whether new cases of AIDS w i l l continue to plateau i n unknown, but i t i s encouraging to those people working with the disease, (p.5) According to Blatherwick's 1987 report, AIDS surveillance and AIDS educational a c t i v i t i e s increased s i g n i f i c a n t l y and " l i a i s o n with other involved agencies also required greater time commitment from the Communicable Disease Control Section" (p.19). Health o f f i c i a l s encouraged the Vancouver School Board to develop AIDS programs for grade 12 students. The c i t y i n s i s t e d that the p r o v i n c i a l government was s t i l l not adequately addressing the emergent health c r i s i s . Furthermore, the c i t y recognized the p o t e n t i a l of disease spreading into the general population. During 1988, C i t y Council approved p o l i c y "Guidelines for Managing HIV Infections i n the Workplace" (Blatherwick, 1988, p. 7). A matter of increasing concern during 1988 was HIV i n f e c t i o n i n the intravenous drug-using population. While lacking information as to the extent of the problem, the "Health Department secured approval to i n i t i a t e a needle exchange program i n t h i s group commencing" i n 1989 (Blatherwick, 1988, p. 7). Dr. Blatherwick, i n his Annual Report of the Medical Health O f f i c e r of the c i t y of Vancouver (1989) stated that: The AIDS epidemic continued to be a problem for the ent i r e community. The Department formulated a major i n i t i a t i v e (to curb the growth of HIV i n f e c t i o n i n the intravenous drug-using population) was the introduction of Needle Exchange Programs, administered i n conjunction with the Downtown Eastside Youth A c t i v i t i e s Society. Enrollment i n the Program soared beyond i n i t i a l expectations (in 1989 an estimated 2,700 indi v i d u a l s made use of the s e r v i c e ) . Plans f o r a de t a i l e d evaluation of the impact of t h i s program are underway f o r 1990. (pp. 2-3) 74 Of the 189 cases of AIDS reported i n B. C. during 1989, a 21% increase over 1988, there were s i g n i f i c a n t changes i n c h a r a c t e r i s t i c s over previous years. " A l l but 2 of the cases occurred i n men with 3/4 of them being between the ages of 30 and 49. Two newborns were eithe r infected during pregnancy or delivered from previously-infected mothers. Sexual transmission accounted for over 95% of the cases" (Blatherwick, 1989, p. 17). John Blatherwick i n h i s Annual Report of the Medical Health O f f i c e r of the Ci t y of Vancouver (1991) wrote about the "New Plague - the Scourge of AIDS" (p. 2). He also stated the "federal government announced i t s National AIDS Strategy i n 1990 and the work of the Vancouver Health Department i s an important foundation on which the National AIDS Strategy depends" (p.3). For the f i r s t time, the number of new cases dropped from 212 i n 1989 to 189 i n 1990 i n Vancouver. However, the d i s t r i b u t i o n of cumulative AIDS cases and p o s i t i v e HIV t e s t r e s u l t s gave cause f o r concern: 5.6% of the p o s i t i v e t e s t s (where sex has been id e n t i f i e d ) are i n women, while only 1.8% of AIDS cases are i n women; 1% of AIDS cases have been noted i n persons whose only r i s k factor i s injectable drug use, where 3.5 of p o s i t i v e t e s t i n B. C. (6.1% i n Vancouver) are i n t h i s group; persons with no i d e n t i f i e d r i s k factors represent les s than 1 % of the AIDS cases but are noted i n 2.3% of p o s i t i v e HIV t e s t i n Vancouver - these inf e c t i o n s may well a r i s e from casual sexual contacts; heterosexual r i s k factors account f o r 2 % of AIDS cases but more than 4 % of p o s i t i v e t e s t s . (Blatherwick, 1991, p.12) Furthermore, these comparisons suggest "the spread of HIV inf e c t i o n s to other than homosexual men i n greater number each years. While the spread i s u n l i k e l y to be explosive, 75 i t w i l l continue unless more resources are devoted to education" (Batherwick, 1991, p. 12). Since 1989 the c i t y of Vancouver's Needle Exchange Program had d i s t r i b u t e d more than a m i l l i o n needles and t h i s indicates a s h i f t i n the c i t y AIDS p r i o r i t i e s . The government of B r i t i s h Columbia started formulating i t s AIDS p o l i c y around the same time as the Ci t y of Vancouver. In the Annual Report (1986/87) of the B r i t i s h Columbia Ministry of Health, AIDS was mentioned f o r the f i r s t time. The document states that the ministry was engaged i n the "development of a comprehensive AIDS public awareness and information program for the public, health care workers, and physicians" (p.20). The same report stated that the number of patient v i s i t s to the p r o v i n c i a l Centre f o r Disease Control increased from 820 i n 1985/86 to 2107 i n 1986/87 (p. 27). In the same year, the p r o v i n c i a l government proposed an amendment to the Health Act gi v i n g medical health o f f i c e r s powers of sanctions, including quarantine, to r e s t r i c t those who expose others to HIV or AIDS. This was the change that some public health o f f i c i a l s wanted and i t i n t e n s i f i e d concern among B r i t i s h Columbia a c t i v i s t s about the government's conservative agenda. Nevertheless, protection against discrimination f o r people with AIDS and HIV was secured by a 1988 decision of the B r i t i s h Columbia Council of Human Rights which applied provisions of the 1984 Human Rights Act on physical d i s a b i l i t y . 76 However, one program d i d i l l u s t r a t e the capacity of the province's AIDS administrators to use established programs i n innovative ways. The street nurse programs, which were d i r e c t s towards homeless people, had been developed i n 1947 and had launched a "nurses i n blue jeans" program for drug users i n the 1960s. Without the need f o r l e g i s l a t i v e approval, the program grew from one nurse to seven, operating out of three storefront o f f i c e s . The nurses had already been d i s t r i b u t i n g condoms p r i o r to AIDS, and simply continued doing so, along with o f f e r i n g counselling and anonymous t e s t i n g to prevent i n f e c t i o n s from HIV. In the B. C. Ministry of Health Annual Report (1987/88) the government announced that "the major health problems today are chronic disease of middle and later-age, heart disease, stroke and cancer, and l i f e s t y l e choices of the i n d i v i d u a l " (p.20). Nevertheless the 1987/88 p r o v i n c i a l Annual Report continued: The d i s t r i b u t i o n to secondary schools, public l i b r a r i e s , and over 500 video stores of AIDS: the New Epidemic. The mailing of AIDS pamphlets to 1.2 m i l l i o n households. The production of "AIDS i n the Workplace:; an information package for management and employees. Development, with the Ministry of Education, of a comprehensive family l i f e education program, which was introduced into Grades 7 through 12 i n September of 1987. (p. 21) The government's grade 7 to 12 curriculum emphasized abstinence from non-marital sex. The abstinence message reinforced the notion that AIDS and other STDs are r e t r i b u t i o n f o r immoral behaviour. In many c u l t u r a l groups, sex without condoms i s often interpreted as an act of 77 intimacy and t r u s t , and so unprotected sex i s highly protected within the culture because of i t s association with those values. For many women, for example, unprotected sex draws i t s value from i t s rel a t i o n s h i p with childbearing and motherhood, which i s for some women, the only s o c i a l l y rewarded r o l e open to them. From a c u l t u r a l standpoint, then, r i s k reduction represents a s i g n i f i c a n t threat to c l o s e l y held b e l i e f s and values. In 1989, no mention of AIDS was made i n the B. G. Ministry of Health Annual Report. Once again, AIDS was not a problem concerning the general public. In 1990, B r i t i s h Columbia was the only province that refused to provide AZT free to a l l AIDS patients. I t was made available, free of charge, to those e l i g i b l e f o r welfare. As a r e s u l t , some members of PWA C o a l i t i o n broke away and formed a new group, ACT UP. Like i t s American counterparts, ACT UP used aggressive, dramatic techniques to c r i t i c i z e the p r o v i n c i a l government fo r i t s f a i l u r e to subsidize costs for AZT for a l l PWAs regardless of t h e i r socioeconomic status. A f t e r a seri e s of public protests, the government announced i t would provide AZT to a l l AIDS patients. More importantly, the B r i t i s h Columbia AIDS Network was formed to bring together representatives of community groups, along with health and s o c i a l agencies across the province. This indicated that AIDS p o l i c y was divergent and a comprehensive plan was needed. According the B. C. Ministry of Health Annual Report (1991/92), the Sexually Transmitted Disease Control D i v i s i o n 78 "expanded i t s program f o r intravenous drug users to reduce transmission of diseases such as AIDS and Hepatitis B i n Kelowna, Quensnel, Williams Lake, and Prince George" (p.17). This suggests that the p r o v i n c i a l government was s t i l l not concerned about AIDS i n the gay community. The B. C. Ministry of Health also expanded i t s AIDS prevention education programs. In the 1992/93 Annual Report. the government announced: This year the Sexually Transmitted Disease Control branch provided $2.5 m i l l i o n i n funds to 52 community-based AIDS education projects. Through the Sentinel Physician System and health uni t e l e c t r o n i c monitoring, s t a f f continued to keep a close watch on the d i s t r i b u t i o n of STDs and AIDS. They also continued with the following targeted prevention programs: Chlamydia and Venereal Warts Control; B r i t i s h Columbia Native Awareness; support for prisoner AIDS education, education f o r the gay community, (p. 28) F i n a l l y the government was beginning to d i v e r s i f y i t s educational strategies. During t h i s second era, the years from 1987 to 1992, AIDS Vancouver's prevention education programs were constructed by the gay community because gay men had been the overwhelming parti c i p a n t s i n the programs. Information gathered by observation and interviewing as well as surveys were u t i l i z e d to design AIDS Vancouver's prevention education programs. Fi n a n c i a l d i f f i c u l t i e s and the lack of government assistance hampered AIDS prevention education. The organization was also hindered by i t s own i n t e r n a l problems such as volunteer discontent over h i r i n g practices of professional s t a f f . The p r o v i n c i a l and c i t y government 79 began to target the intravenous drug using population. This high l e v e l p o l i t i c a l intervention occurred only when the threat to the heterosexual population became c l e a r because the government did not care so long as merely gay men were affected. C o n f l i c t between the gay community and "professionals" emerged over behaviour changes i n the gay community. The former maintained funding was needed to change behaviour i n the gay community, whereas the l a t t e r maintained some gay men were engaging i n high r i s k a c t i v i t i e s . Paid professionals also replaced e a r l i e r volunteers. The Third Era. 1992T1994: Towards More Comprehensive Programs During t h i s phase, post-1992, o f f i c i a l i n s t i t u t i o n s have been established and formal procedures have been adopted and reviewed. AIDS has made s t r u c t u r a l changes to health care. Interventions on the community, c i v i c , and p r o v i n c i a l l e v e l s respond to the nuances of c u l t u r a l p a r t i c u l a r i t y and d e t a i l . They are based on an understanding of sexual experience and intravenous drug using as rooted i n c u l t u r a l meanings and systems. According to The Volunteer Voice ( F a l l 1993), the education department now consists of ten or more educators and more than two couple hundred volunteers (p.8). I t o f f e r s an e x t r a o r d i n a r i l y broad array of programs. According to the newsletter, "the programs are designed to address an increasingly comprehensive range of needs, from interventions that are t a i l o r e d for people of l i m i t e d l i t e r a c y to programs that press toward untangling deeper 80 psychological b a r r i e r s to consistent long-term safer sex behaviour" (AIDS Vancouver, 1993, p.8). Three basic kinds of programs are provided. F i r s t , AIDS Vancouver o f f e r s a v a r i e t y of r i s k reduction programs fo r people, including targeted interventions f o r gay men, relapse prevention programs and workshops designed to a s s i s t people i n making informed decisions about HIV antibody t e s t i n g . Many are offered i n workshops that encourage in t e r a c t i o n among p a r t i c i p a n t s . These workshops o r d i n a r i l y l a s t from three to eight hours. Th e a t r i c a l presentation and intercept peer counselling models are also employed for some audiences. V i r t u a l l y a l l of these program services are provided by trained volunteers, most of whom are members of the target audiences from which the programs are designed. Second, information forums give HIV-infected people the facts they need i n order to improve the q u a l i t y of t h e i r l i v e s and t h e i r medical care. These forums cover such issues as current therapies for HIV disease and opportunistic i n f e c t i o n s , n u t r i t i o n , l e g a l issues, and a v a i l a b l e f i n a n c i a l support. Third, AIDS Vancouver o f f e r s programs through a v a r i e t y of community groups such as churches, schools, employers, and s o c i a l and professional organizations i s basic AIDS and safer sex i n s t r u c t i o n . Most of t h i s work i s given by trained volunteers. The hot l i n e continues to provide information and r e f e r r a l services. The education department d i s t r i b u t e s educational l i t e r a t u r e and free condoms to those i n need of 81 r i s k reduction information. Professional mental health counsellors are also trained i n the ways to make r i s k reduction information available to the people they deal with from day to day. In the F a l l 1994 The Volunteer Voice. Marchand states that "constant t e s t i n g of AIDS Vancouver's prevention education revealed unexpected layers of emotion as the community interacted with the information about HIV which they encounter i n the educational intervention" (p. 2). For example, when AIDS Vancouver began the implementation of "Man to Man" Program i n 1992 and 1993, the workshop focused on maintaining safer sex behavior over time. The f a c i l i t a t o r s were surprised by how much anger was generated within the group during the program. By debriefing f a c i l i t a t o r s , reviewing responses generated during exercises, and asking participants about t h e i r experiences, educators began to get at the root of the issue. The workshop focused on a l l the reasons i t i s d i f f i c u l t to maintain safer sex behavior and so brought forward a l l of the anger at having to make AIDS a permanent part of the sexual landscape i n the gay community. "Why us?" was the root emotion many men seemed to express; many were simply emotionally exhausted from dealing with AIDS fo r so long, e s p e c i a l l y without larger community support. This resulted i n considerable a l t e r a t i o n of some of the exercises within the workshop, so that the participants had adequate time to process t h e i r feelings. I t also made the program designers recognize that d i f f e r e n t f a c i l i t a t i o n s k i l l s would be needed 82 i n the volunteer group leaders than had o r i g i n a l l y been anticipated. As a r e s u l t , more experienced volunteers and volunteers with mental health experience were recruited for the program. These changes were accomplished gradually through the i n i t i a l implementation of the program and the f a c i l i t a t o r s are encouraged to take an ad hoc approach to education i n any given se t t i n g . According to AIDS Vancouver's 1993 Annual Report, the education department maintains production units f o r publi c a t i o n and audiovisual materials, an educational research team responsible for a s s i s t i n g with program development and conducting evaluations, and corps of comprehensively trained volunteers of every demographic descr i p t i o n (pp 1-8). The budget of AIDS Vancouver comes from public and private sources. However, lack of adequate unrestricted funding has made program expansion exceedingly d i f f i c u l t (AIDS Vancouver, Annual Report. 1993, p. 8). According the B. C. Ministry of Health Annual Report (1994), evidence suggests that the impact of AIDS i s occurring more among s o c i a l l y and economically disadvantaged populations. "For example, a Vancouver study of men with HIV i n f e c t i o n showed that men with lower socio-economic status had s i g n i f i c a n t l y shorter s u r v i v a l than high income men" (p. 17). The same report states "there i s an alarming increase i n the number of HIV infections among i n j e c t i o n drug users i n B r i t i s h Columbia. Most cases have been reported from Vancouver's Downtown Eastside, although the problem i s not confined to that area" (p. 18). Most s i g n i f i c a n t l y , the 83 Annual Report reveals that "the rate of growth i n the HIV among intravenous drug users i s s i m i l a r to that i n gay men i n the early to mid-1980s. I f the trend continues, IDUs may soon overtake gay men as the r i s k group with high number of po s i t i v e t e s t s " (p. 18). For the f i r s t time, the Annual Report (1994) made mention of women: Five of every 10,000 pregnant women i n B. C. are HIV p o s i t i v e . Many of these women are unaware that they have been at r i s k f o r HIV or are infected. Babies born to HIV-positive mothers have a 25% chance of being HIV p o s i t i v e . Two- thi r d s of these cases of mother-rto-child transmission can be prevented, i f HIV p o s i t i v e women take the AIDS drug AZT during pregnancy and during the b i r t h i n g process, (p.18) Based on these findings, the p r o v i n c i a l health o f f i c e r recommended that a l l pregnant women should be screened for HIV i n f e c t i o n a f t e r adequate counselling and informed consent. The problems of AIDS among women have only recently received much attention, with the lag a t t r i b u t a b l e , i n part, to the predominance of narrow constructions of AIDS. To date, women with AIDS have tended to be ignored and l e f t out of programs because they d i d not f i t e a s i l y into gay male groups, because t h e i r symptoms and c o n s t e l l a t i o n of inf e c t i o n s d i d not f i t Centers for Disease Control (CDC) guidelines, or simply because the AIDS prevention education programs were s p e c i f i c a l l y designed for men. The t h i r d era i s very much i n progress i n terms of i t s implications, i t i s therefore d i f f i c u l t too draw any hard and fast conclusions. 84 Summary AIDS Vancouver has developed into a Type Three organization as suggest by Mann (1992a). According to Mann (1992a), AIDS organizations evolve from a Type One information organization to a Type Three community advocacy organization with linkages to various health and professional services. AIDS Vancouver was a Type One organization during the period from 1983 to 1986. By 1992, AIDS Vancouver had evolved into a Type Three organization. However, the his t o r y of AIDS i n Vancouver does not coincide with Mann's hi s t o r y of AIDS. Mann (1992a) suggested that there were three periods i n the his t o r y of AIDS. F i r s t , the period of silence which ended i n 1981. Second, the period of discovery which ended i n 1985. Third, the period of mobilization which began i n 1985. Community a c t i v i s t s and the c i v i c and p r o v i n c i a l government d i d not mobilize u n t i l 1987. I t i s equally important to note that i n e f f e c t a period of silence continues because there i s very l i t t l e discussion of AIDS i n women and i n various ethnic groups. The h i s t o r y of AIDS i n Vancouver also does not coincide with Rayside & Linguist's (1992) his t o r y of AIDS. According to Rayside & Linquist, the his t o r y of AIDS has moved through three d i s t i n c t periods. The f i r s t began i n the early 1980s when AIDS was ignored. The second period began i n 1985 when a l l l e v e l s of government made commitments to AIDS programs. The t h i r d period began i n 1988 when Canada developed a coherent AIDS strategies. The h i s t o r y of AIDS i n Vancouver revealed that the c i v i c and p r o v i n c i a l 85 government d i d not commit to AIDS programs u n t i l 1987. Furthermore, there i s s t i l l no coherent AIDS strategy i n the Province of B r i t i s h Columbia. In the next chapter, I move the discussion to those issues surrounding AIDS prevention education that were found i n the documents. 86 C H A P T E R F I V E : D I S C U S S I O N This study has yielded information i n response to the following guiding research questions: 1) What i s being said about AIDS? 2) To whom and for whom i s i t being said? 3) How i s i t being said? Lurking behind these questions i s the following question, Whom has had the power to define AIDS discourse? The discussion responds to the research question and reviews findings i n r e l a t i o n to the l i t e r a t u r e . The subsequent analysis centers around how AIDS discourses have been affected by so c i o - c u l t u r a l and biodeterministic factors and attempts to express the hidden meanings i n the discourse. AIDS i n Context AIDS seemed to appear out of h i s t o r i c a l context. I t properly belonged to a distant and less comfortable past, before economic and s c i e n t i f i c progress had combined to banish the "ancient" plagues. People i n the advanced i n d u s t r i a l world have become f a m i l i a r with a "modern" pattern of chronic diseases such as cancer and heart disease and have included a long l i s t of disagreeable, but non-fatal i l l n e s s e s . Mass infectious diseases had ceased to command the attention of health p o l i c y analysis i n the advanced i n d u s t r i a l world (Gould, 1990; Fauci, 1991). The Province of B r i t i s h Columbia and the City of Vancouver did not pay much attention to AIDS u n t i l the mid-1980s. The documents do not reveal whether the ministry and c i v i c health department were doing research i n the community and i f any funds were made 87 availa b l e for such investigations. This study suggests that gay men i n Vancouver and i n the advanced i n d u s t r i a l i n general world perceived AIDS as being i n f e c t i o u s . Gay men had defined health p o l i c y and rejected the " l i f e s t y l e " hypothesis developed i n the United States between 1981 and 1983. However, prevention education programs emphasized " l i f e s t y l e " or behavioural changes to prevent disease and to reduce or eliminate symptoms associated with AIDS. AIDS also challenges the assumption that the l a t e 20th century d i v i s i o n of diseases into i n f e c t i o u s and chronic disorders naturally f i t t e d economic and geographic d i s t r i b u t i o n , with the chronic diseases appearing i n highly i n d u s t r i a l i z e d nations and serious infectious diseases i n less developed countries (Gorund, 1993). An epidemiologist's understanding of the transmission of infect i o u s disease i s much d i f f e r e n t from a layperson's, and i s characterized by the c l a s s i f i c a t i o n of disease agents into s p e c i f i c categories such as f e c a l , o r a l , respiratory, vector borne, and sexually transmitted. For many laypersons, disease i s c l a s s i f i e d i n a much more undifferentiated way, that i s , contagious, very contagious, and not contagious. Thus, once AIDS becomes glossed as "contagious" i t may be spread i n a l l sorts of ways, even i f i t i s understood to be "not very contagious." The connection of the term " v i r u s " to AIDS may also impute a c e r t a i n association with "contagiousness." When experts say that AIDS i s not transmitted by casual contact, what do they mean? Is i t transmitted l i k e other viruses?" The term "v i r u s , " which s i g n i f i e s a s p e c i f i c type 88 of disease agent to an epidemiologist, means something e n t i r e l y d i f f e r e n t to the lay public and some i n the medical profession, who use the term to describe f e b r i l e i l l n e s s e s that seem to "go around" (Fauci, 1991; Gorund, 1993). AIDS i s s t r i c t l y a disease of humans, and i t i s one of the most important diseases that a f f l i c t s humanity. I t s manifestations are so varied that AIDS i s an epitome of pathology, and i t s study i s one of the in t e r e s t s of every branch of medicine (Mann, 1992b). I t i s surely the most d i f f i c u l t of diseases from the point of view of sociology, for i t i s i n e x t r i c a b l y involved with sexuality (Herdt & Lindenbaum, 1992). For example, AIDS Vancouver has attempted to reach persons that have sex with other men, but do not i d e n t i f y as gay. This raises an important issue surrounding research. The s o c i a l practices described must be grounded i n the s p e c i f i c d e t a i l s of people's everyday l i v e s , and yet they must include attention to the complex and broader constrains a f f e c t i n g the behaviour that places people at r i s k f o r HIV i n f e c t i o n . Complex l e g a l , medical, and e t h i c a l issues have been raised i n debates about the appropriate public health and l e g i s l a t i v e responses to AIDS. Various controversial measures have been proposed by the Ministry of Health, including mandatory t e s t i n g and quarantine. This development was consistent with the United States and Australian experiences (Altman, 1988; Rayside & Linguist, 1992). Opponents of such measures pointed out that t h e i r measures would drive persons at r i s k of i n f e c t i o n away from sources of medical care and counselling and argue that coercion i s i n e f f e c t i v e i n c o n t r o l l i n g sexual behavior and IV drug use. AIDS as Discourse Non-neutral discourse has surrounded "the AIDS question" since the e a r l i e s t days of t h i s health c r i s i s . Among the factors contributing to the emergence of non- neutral discourses were, the sudden appearance of AIDS on the international health scene, i t s rapid spread across national and s o c i a l boundaries, the d i v e r s i t y and complexity of i t s external symptoms, the absence of e f f e c t i v e treatment strategies, and the close association between occurrence of AIDS and segments of the national population already considered to be, i n some sense, "non-neutral" themselves. But also contributing to i t s non-neutrality, of course, was the f a c t that t h i s "new disease" did not have a name. As a r e s u l t , "there arose a dizzying array of acronyms, being bandied about as possible monikers f o r (the) epidemic, each contributing i t s own subtle commentary on the medical and s o c i a l conditions at hand" ( S h i l t s , 1987, p. 137). Doctors were not the only persons i n B r i t i s h Columbia who i d e n t i f i e d t h i s disease i n terms of "who i t h i t . " From several points of view there were advantages to be gained from "naming the unnamed" i n terms of such references. For one thing, terms l i k e GRID, Gay Plague, and the l i k e established ownership of t h i s health condition as being persons who were not a part of the speakers' immediate experience; they made i t , i n other words, "somebody else's health problem," not t h e i r own. That, i n turn, allowed 90 speakers to advance a s a t i s f y i n g , even i f somewhat se l f - s e r v i n g explanation, f o r the existence of AIDS: "suspicious people get suspicious diseases." Learning that t h i s "gay disease" was also showing up among IV drug users and prostitutes i n the province by 1987, d i d not a l t e r the l o g i c of t h i s argument. These were also "suspicious" populations, from the point of view of the society at large, and that made i t easy to consider them as members of the same "suspect c l a s s . " Reasons why persons with hemophilia were also among those at r i s k were obscured under t h i s analysis unless one simply assumed, as many did, that a l l persons with AIDS were homosexual persons. The ready-made appeal of these "whom i t h i t " labels and the "comforting" point of view that they brought to any discussion of the emerging health c r i s i s made i t a l l the more s i g n i f i c a n t that, f i r s t within the s c i e n t i f i c community and then, though less rapidly, throughout the society as a whole, the term AIDS became the l a b e l of choice f o r t h i s disease i n 1987 (Mann, 1992b). This term implies that members of any p a r t i c u l a r group are inherently "at r i s k " and a speaker's use of t h i s term reinforces value-laden assumptions about the existence of the disease or the s o c i a l status of those who come i n contact with i t . I t would be wrong, however, to conclude that the term AIDS gives speakers of English a means for overcoming the conditions of "non^neutral discourse" captured so f o r c e f u l l y by other, more subjective, l a b e l s . I n i t i a l appearances to the contrary> AIDS c a r r i e s with i t a point of view s i m i l a r 91 to the one j u s t described - an emphasis on the distance separating the speaker from conditions at r i s k , and on the i r r e g u l a r nature of the "at r i s k " condition i t s e l f (Dickinson, 1995). The expression, "AIDS," expresses t h i s point of view i n several ways, including the combination of meanings presented by the words acquired, immune, deficiency, and syndrome. Used by i t s e l f , deficiency i d e n t i f i e s an absence of features otherwise expected to be present i n a given s i t u a t i o n . Deficiency also implies that the s i t u a t i o n being described has been weakened or disadvantaged, i n some way, by t h i s absence. Absent i n t h i s case i s the a b i l i t y to successfully r e s i s t c e r t a i n types of diseases to which, under other circumstances, human beings are t y p i c a l l y immune. Immunodeficiency i s es p e c i a l l y serious, given that i t i s not an inherent condition but has been introduced through contact with some external source; that i s , the immunodeficiency i s acquired. The wording of t h i s l a b e l does not make cl e a r why a c q u i s i t i o n has occurred. However, i t i s c l e a r that the ac q u i s i t i o n of immune deficiency i s not an i s o l a t e d event, but i s something which occurs i n any number of contexts the condition i s described as a syndrome. Syndrome i s not a word commonly used during English language conversations i n nontechnical contexts. And usually, when i t does occur, the condition that i t i d e n t i f i e s has already been assigned less-than-desirable c h a r a c t e r i s t i c s . Syndrome i s an appropriate element within t h i s term i n both of these senses. 92 "Ordinary" English, the language spoken outside of s c i e n t i f i c , c l i n i c a l , or academic domains, contains few expressions made up of "sequences" of three or more words (Feldman, 1994). When expressions of that length do occur, the meanings of those expressions always draw attention to things d i s t i n c t from the everyday experiences of speakers and l i s t e n e r s , to things which need to be respected (or feared) because of the s p e c i a l q u a l i t i e s associated with them. English speakers describe d e t a i l s of everyday experience i n terms that are much less complex i n structure or composition (Smith, 1990). So whatever else i s implied by the meaning of the three-word phrase, reference to an acquired immunodeficiency syndrome cannot be a reference to an ordinary occurrence, measured" i n terms of t h i s c r i t e r i o n . We know that "length of construction" i s an issue f o r speakers of English i n t h i s case (Feldman, 1994). Almost from the moment that acquired immunodeficiency syndrome became the term of choice i n English, speakers began to rework i t i n t o the now, f a m i l i a r abbreviation: AIDS. Use of the abbreviation c e r t a i n l y made the reference process considerably less cumbersome (Feldman, 1994; Herdt & Lindenbaum, 1992). At the same time, reference by abbreviation establishes, through the f a c t of shared l i n g u i s t i c structure, p a r a l l e l s between the meaning of AIDS and the meanings of other references s p e c i f i e d by abbreviations i n English (Feldman, 1994). Those references include things that people hold i n high personal regard, f o r example, Ph.D.(particularly i f i t s p e c i f i e s one's own 93 achievement). In those cases, the p a r a l l e l s do not properly apply, and use of an abbreviation highlights t h i s contrast. These p a r a l l e l s are much more appropriate i n instances l i k e LSD, TB, STD, where abbreviations specify references to things which the Canadian public does not value highly, things with which most Canadians prefer to have as l i t t l e a ssociation as possible. Reference to AIDS v i a abbreviation underscores s i m i l a r i t i e s with the s o c i a l meanings common to items i n the l a t t e r category, j u s t as i t contrasts with the s o c i a l meanings i n the former one. The exchange of information during discussions of AIDS cannot help but be affected by both of these messages. In 1984, AIDS Vancouver did encourage gay men to be e x p l i c i t about t h e i r health and HIV/AIDS status. However, the statement, "I am HIV p o s i t i v e , " has been and often remains too personally scarey and p o t e n t i a l l y stigmatizing to reveal. An abbreviation, f o r example, may be much easier f o r a speaker to remember, compared to i t s unabbreviated counterpart; and that, i n turn, may make the abbreviation easier to learn. But i t becomes possible, under such circumstances, for a speaker of English to master the abbreviated form of the "correct" expression, and to use i t i n conversations, without being consciously aware of the f u l l d e t a i l of the unabbreviated phrase or the precise meaning that the abbreviation has subsumed (Feldman, 1994). In fact, i n more than a few instances, for example, PCB (the pollutants found i n e l e c t r i c a l transformers), PCP (the hallucinogen commonly c a l l e d "angel dust"), and HIV (the 94 v i r a l agent which causes AIDS), most speakers (and l i s t e n e r s ) of English would probably be hard-pressed to make such i d e n t i f i c a t i o n s accurately, were they asked to do so. U n f a m i l i a r i t y with such d e t a i l does not prevent people from using those abbreviations when the topics under discussion require i t . And by doing that, speakers are using terms they may not completely understand to t a l k about topics which are, i n the sense j u s t noted, unusual and i r r e g u l a r i n t h e i r own r i g h t . Such a usage strategy makes i t s own contribution to the meaning expressed and exchanged i n such discussions; that strategy becomes p a r t i c u l a r l y relevant when the discussion involves a to p i c as disquieting as AIDS. AIDS prevention education programs i n B r i t i s h Columbia have been c l i n i c a l . No measurement studies or ethnographies have revealed the extent of both the misunderstanding and di s a s s o c i a t i o n of AIDS i n the public. Whether the speaker uses highly subjective and emotion laden expressions l i k e Gay Plague or GRID, or words and phrases that appear to be more objective s i g n i f i c a t i o n of meaning, the non-neutral nature of the discourse surrounding AIDS i s p a r a l l e l e d by the non-neutral point of view which underlies the terminology of that discourse. In other words, regardless of the message that the speaker intends to be communicating, any discussion of AIDS ultimately becomes an encounter, through language, with the " i r r e g u l a r status" of t h i s health condition as well as an encounter with the uncertainty which accompanies i t (Gorund, 1993). I t i s quite c l e a r that some speakers of English have no problem working 95 i n terms of such encounters and the meanings, e x p l i c i t and i m p l i c i t , that they contain. And i n some instances, speakers a c t i v e l y attempt to maximize the occurrence of such language-based AIDS encounters, and to make f u l l e s t use out of the e f f e c t s those encounters have on the given conversation. In other cases, and, I suspect, i n the majority of instances within "ordinary English" conversation, speakers of English adopt exactly the opposite stance. Instead of maximizing language based encounters with AIDS, they turn to one or more of the following strategies to f i n d ways to minimize the occurrence of such encounters, refocusing i n the process the meaning of the discussion into other, "safer" domains. As the study progressed, i t became more apparent to the author that the outcome of events occurring i n the present have been set i n motion long ago i n an i n d i v i d u a l ' s l i f e h i s t o r y . The patterns of behavior established during an i n d i v i d u a l ' s formative years, e s p e c i a l l y his/her learned responses to a c r i s i s s i t u a t i o n , condition to a considerable extent his/her future response to a l i f e - t h r e a t e n i n g i l l n e s s such as AIDS. AIDS has considerable influence i n producing changes i n an i n d i v i d u a l ' s network of s o c i a l r e l a t i o n s h i p s . As AIDS has been bandied about with the labels "gay plague" or "gay cancer," i t s diagnosis can awaken dormant, or exacerbate active, feelings and attitudes of homophobia as well as discrimination within the gay community - as evidenced i n Vancouver as early as 1983. G u i l t i s everywhere an i n i t i a l 96 emotional response. The important point, however, i s that sociology and psychology reveal that d i f f e r e n t i n d i v i d u a l s have learned d i f f e r e n t ways of processing the g u i l t (Herdt & Lindenbaum, 1992). But i n each case the response appears to conform to the t r a d i t i o n a l , patterned way of handling stigma for that p a r t i c u l a r i n d i v i d u a l . These techniques for managing stigma do not merely represent a set of responses stemming from AIDS as a disease phenomenon (which could be singled out and labeled as disease-phobia or AIDS-phobia) . As I w i l l explain below, "blaming the yicfelft" and "sham," two system-maintaining ideologies, frame s o c i a l relationships i n the face of AIDS (Grover, 1992; Gorund, 1993). The former i s an example of the s o c i a l construction of t r a d i t i o n a l approaches; the l a t t e r i s more c l o s e l y associated with behaviour and i d e n t i t y . Each system-maintaining ideology provides us with a p a r t i a l blueprint for networking s o c i a l t i e s employed by gay men. These ideologies, simultaneously considered, permit r e f l e c t i o n s upon the varied responses by gay men to AIDS as a c u l t u r a l phenomenon. Homophobia, as i t masks i t s e l f i n these ideologies, can be accounted f o r from recent and current i n t e r a c t i o n as well as from a much e a r l i e r period i n an i n d i v i d u a l ' s l i f e h istory. Homophobia I begin with a discussion of homophobia generally, and then move on to a consideration of the system-maintaining ideologies. The goal i s to pinpoint more p r e c i s e l y the 97 contribution each makes to the presentation of s o c i a l r e l a t i o n s h i p s i n the face of AIDS. Homophobia re f e r s to the fear by heterosexuals of being i n close quarters with homosexuals; among gays themselves, i t ref e r s to s e l f - l o a t h i n g . Homophobia also i s a general c u l t u r a l phenomenon that has been used to explain two d i f f e r e n t pathologies. On the one hand, i t has been used by psychologists to explain a c u l t u r a l pathology among "s t r a i g h t s " ( i . e . , heterosexuals), and, on the other, i t has been used by psychological observers, analysts, and c l i n i c i a n s as an explanation for a p a r t i c u l a r pathology which a f f e c t s the l i v e s of gay men such as the expression of homophobic attitudes by others (Grover, 1992). Although as a psychological concept i t refers to the fear of same sex, i n the present context, the author further i d e n t i f i e s i t as a process of i n t e r n a l i z a t i o n . Every male, gay or straight, a f t e r a l l , has been raised i n a household with a parent/s or guardian who usually p a r t i c i p a t e s i n a heterosexual r e l a t i o n s h i p ; i n h i s s o c i a l i z a t i o n , he has been l i b e r a l l y exposed, I may assume, to t h e i r biases and values. Among these are those associated with sexual orientation. The dominant society's values and attitudes toward homosexuals and homosexuality, along with other attitudes transmitted during s o c i a l i z a t i o n , then, are i n t e r n a l i z e d or introjeeted. The system maintaining ideologies mentioned e a r l i e r channel those biases associated with the s o c i a l i z a t i o n of homophobic attitudes i n p a r t i c u l a r ways that l i n k them to c e r t a i n repressive economic and 98 p o l i t i c a l behaviors that i n the popular media have eome to be associated with AIDS. When the source for attitudes of homophobia i s external, at the group l e v e l , the system maintaining ideology that malfunctions from the point of view of gay males i s "blaming the v i c t i m . " The operation of t h i s ideology allows for the inequity of sexual gender and orien t a t i o n as a pervasive c h a r a c t e r i s t i c f o r major portions of society to remain unchecked. When the o r i g i n f o r the attitudes of homophobia i s i n t e r n a l l y derived, at the i n d i v i d u a l l e v e l , the system maintaining ideology i s "sham," the preference f o r the production of a counterfeit society over one that recognizes the d i v e r s i t y i n needs and behaviors of a l l i t s c i t i z e n s . Only gradually does each gay male i n h i s growing-up years become aware, with respect to h i s sexual orientation, of h i s being d i f f e r e n t , of h i s separateness, from members of h i s own family and other s o c i a l groupings. "Sham" permits t h i s i n d i v i d u a l to play out a charade of conformity as a process of managing hi s stigma. The gay male c h i l d or adolescent i s allowed to save face by pretending to be that which he i s not, a heterosexual. In those instances where he does not e x h i b i t the appropriate behavior, a sense of personal sham can be imposed by members from these groups i n an e f f o r t to bring h i s outward behavior more into alignment with the expected i n t e r n a l norm. Homophobia and System Maintaining Ideologies In t h i s section, I wish to pinpoint the ways i n which these system maintaining ideologies a r t i c u l a t e homophobic 99 attitudes, both among heterosexuals and among gays. Homophobia thus prepares the way i n which AIDS as a c u l t u r a l phenomenon becomes embedded. According to Smith (1990), the creation of ideologies that often perpetuate the status quo represents malfunctions i n a culture's s o c i a l and economic structure. The need for these ideologies, she continues, i s greater i n those s o c i e t i e s that are s t r a t i f i e d into haves and have-nots and whose r e s u l t i n g tension represents a challenge to the established order. In applying t h i s view of s o c i a l inequality and inequity to the gay community, an important contrast with other stigmatized minorities i s brought into sharp focus. The discrimination against gays i s not always primarily or d i r e c t l y economic. As a consequence of t h e i r chameleonlike status, many men can shed or take on a public gay i d e n t i t y at w i l l depending on the appropriateness of the p a r t i c u l a r context. The phenomenon of "passing," a process more i n tune with white expectations for black behavior of two generations ago, i s an a b i l i t y gays possess that i s ext r a o r d i n a r i l y pervasive. I t can be argued that discrimination against gays i n Vancouver i s primarily p o l i t i c a l and r e f l e c t s the growing recognition, or at l e a s t the perception, of t h e i r greater p o l i t i c a l influence as a r e s u l t of increased i n t e r n a l unity. The forces bringing about extensive i n t e r n a l p o l i t i c a l s o l i d a r i t y are the same forces that are responsible f o r the transformation of gay men from the l a b e l of sexual "perverts" or "deviants" to t h e i r i n c l u s i o n into a minority 100 group, a subculture. The media attention surrounding AIDS has added immeasurably to t h i s p o l i t i c a l v i s i b i l i t y . In t h e i r quest to sensationalize AIDS phenomena, the media has expanded i t s forum f o r both pro-gay and anti-gay forces to bring t h e i r respective points of view to the publ i c . The agenda for t h i s forum extends beyond AIDS and includes the p o l i t i c a l presence of gays i n the Vancouver area. Blaming the Victim(s) "Blaming the vi c t i m " depends on a process of i d e n t i f i c a t i o n whereby the marginalized and stigmatized group member i s i d e n t i f i e d as strange and d i f f e r e n t , or i n other words as outsiders and "a l i e n s . " Successful i d e n t i f i c a t i o n on the parts of the r i s k groups with notions of i n t e r n a l i z e d self-blame require that society create them as consenting to t h e i r s o c i a l disinheritance. Aspiring "victim" blamers are compelled to stress that PWAs think i n d i f f e r e n t forms and act i n d i f f e r e n t patterns, cling to d i f f e r e n t "truths." Both PWAs and at r i s k groups are so d i f f e r e n t from an implied "rest of us" i n society that t h e i r stigmatization can become normalized and r a t i o n a l i z e d . This masks the deeper processes through which homophobia and fear of the disease reinforce i n e f f e c t u a l AIDS education. An opposition to homophobia r e s u l t s i n a pyrrhic v i c t o r y , i . e . unsafe sex practices. As Smith (1990) declares i n her discussion of ideology and sexual discrimination i n the contemporary society, "blaming the vi c t i m " helps to cover up the l i a b i l i t y of the 101 conditions of inequality and discrimination under which that group l i v e s . With respect to the s i t u a t i o n involving gay males i n Vancouver and elsewhere, misrepresentation of facts was widely used as demagoguery i n the campaign fo r a gay quarantine. I t i s important to recognize that "blaming the v i c t i m " consists, wherever and whenever i t occurs, of a set of non-facts. Victim blaming as an ideology and a discourse discounts the agency of those blamed. In the next section, attention w i l l be drawn to the ways i n which AIDS Vancouver documents revealed a two way i n t e r a c t i o n i n the gay community i n which response to victim-blaming took the form of oppositional practices of unsafe sex. As I w i l l show, such practices are referred to as "shamming" and r a i s e d i f f i c u l t issues and implications for the mainstream as well as the gay community. Shamming the Victim(s) and "Victims" Shamming Back Some discussion within AIDS Vancouver indicated that some members were aware that an ideology of v i c t i m blaming was inadeguate to explain how and why unsafe practices were taking place despite AIDS prevention education e f f o r t s . For example, Christopher Koth i n Contact (1990) wrote that "there i s a need fo r on-going education and support for gay men because the fundamentals of sexual safety are being ignored" (p. 7). Furthermore, "a large proportion of i n d i v i d u a l s became infected during t h e i r adolescence which can indicate that are i n denial about t h e i r sexuality" (p.3). Minutes from an A p r i l 1991 board meeting reveal that 102 some board members expressed concern that many people were concealing t h e i r HIV status and t h e i r gayness. "Sham" i s a combination of concealment and pretense. I t may be aimed at refusing the stigma of homophobia and conservative moralism, but ultimately i t may also i r o n i c a l l y r e s u l t i n unsafe and sexual practices. S o c i a l l i f e and good manners compel deception for even the most t r u l y innocent and well-intentioned among us. What was stated i n the document of AIDS Vancouver was also echoed by gay a c t i v i s t researchers. According to Feldman (1992), "engineered by fear, sham i s a bridge between the undesirable and the necessary, making the undesirable useful and the necessary bearable" (p. 99 ). He continues, "he r e a l problem i s not whether to be a sham, but to understand when to drop the mask and when to put i t on" (p. 99). While stigma management i s a general feature of society and a process that occurs wherever there are i d e n t i t y norms to be established. I see shamming as a form of stigma management, s p e c i f i c t o the gay community. For example, gay youths spend t h e i r childhoods among "st r a i g h t s " learning compulsary heterosexual s o c i a l s k i l l s enabling them to hide t h e i r gay i d e n t i t i e s . Many such youth experience the culture's r i t u a l s of courtship, dating, and even mating with clammy hands, feigned excitement, counterfeit enthusiasm, and concealed anxiety. They p l a y out the sham of heterosexual behavior, thereby hoping to a l l a y any suspicions about t h e i r true desires. And true to the structure of "gay sham," while they conceal the most 103 important truths about themselves from those most c l o s e l y related to them, they engage i n a c t i v i t i e s of the most intimate kind with the males they met only moments before and many times w i l l never see again. These in d i v i d u a l s , then, have learned a successfully "sham," often at untold personal expense. Some eventually come to compartmentalize t h e i r l i v e s into public and personal, and to disallow them from being intertwined. Concealment becomes a s e l f - p r o t e c t i v e and injurious strategy. Their i n t e r n a l i z a t i o n of homophobia enables t h e i r consent to deny t h e i r homosexuality i n public i n order to i n t e r a c t or get by i n the s t r a i g h t world. With the ascendance of conservative public r h e t o r i c on nuclear f a m i l i a l i s m i s hardly disappearing, homophobia i n society appears to be a common phenomenon. I t lends i t s e l f most s i g n i f i c a n t l y to the creation of the ghetto-like status of gay neighborhoods i n the advanced i n d u s t r i a l world. And i n t h i s respect, i t has a d i r e c t role i n s e t t i n g the stage for AIDS. Gays as a subeultural grouping are marked o f f and sometimes geographically cordoned o f f from the larger society by v i r t u e of t h e i r sexual orientation. As a consequence, sexually oriented businesses catering to gay s o c i a l a c t i v i t i e s , gay baths, bookstores, leather boutiques, and pornographic theaters are concentrated predominantly i n these areas of the c i t y o f f e r i n g gay men easy access to frequent, anonymous, and impersonal sex, often times next door or down the street. This can be a b a r r i e r to successful AIDS prevention education compaigns. 1 0 4 Summary: A study of sexually transmitted disease reveals the complex interplay between c u l t u r a l and p o l i t i c a l factors i n society's response to diseases. AIDS i s becoming increasingly p o l i t i c i z e d , and fear of the disease can be manipulated to j u s t i f y various p o l t i c a l and s o c i a l agendas. The advocates of i n d i v i d u a l r e s p o n s i b i l i t y seem uninterested i n the complexities of i n d i v i d u a l motivation or the r o l e of c u l t u r a l conditioning i n the shaping of behaviour. They seem to assume an uniformly high degree of autonomous i n d i v i d u a l control over one's l i f e circumstances, denying the relevance of gender, s o c i a l c l a s s , or race, and sexual o r i e n t a t i o n i n determining the parameters of i n d i v i d u a l choice. I f t h i s i d e o l o g i c a l trend continues to gain credence, AIDS prevention educators w i l l not have the power to end the AIDS epidemic. 105 CHAPTER SIX: CONCLUSIONS. IMPLICATIONS. AND RECOMMENDATIONS Conclusions The study u t i l i z e d a p o s t s t r u c t u r a l i s t mode of discourse analysis and aimed not to trace causal influences among AIDS prevention education programs i n Vancouver between 1983-1994, nor did i t adhere to s t r i c t h i s t o r i c a l p r i n c i p l e s . Rather i t attempted to reveal who has had the power to construct, d e l i v e r , and implement AIDS prevention education. In order to do t h i s , AIDS Vancouver's p o l i c y documents and newsletters were u t i l i z e d . These discourses represented important s i t e s of public discourse around AIDS prevention education. The study also included data from personal journals of those that have been involved i n the development of AIDS prevention education. These documents represented the discourse f o r the development, implementation, and evaluation of curriculum and i n s t r u c t i o n i n the community around AIDS prevention education. The documents were useful i n many ways. I t was possible to demonstrate h i s t o r i c a l changes over time, but they are weak i n one sense, they do not reveal how the organization dealt with homophobia, sexism, and racism. To address these issues, I maintain that i t would be necessary to interview indiv i d u a l s i n order to understand these issues i n the context of AIDS. In addition, f a i l u r e to incorporate culture as a basic underlying epistemiological p r i n c i p l e can only y i e l d short-sighted findings. E x p l i c a t i n g relevant c u l t u r a l factors, issues, and 106 experiences i s a time consuming process. However, without considering culture, the research w i l l be reduced i n i t s o v e r a l l effectiveness. Based on the evidence presented here, h i s t o r y has played two quite d i s t i n c t roles i n the AIDS story. I n i t i a l l y , AIDS was a "new" p o l i c y area where established i n t e r e s t s and p o l i c y l i n e s had not yet o s s i f i e d . In an open s i t u a t i o n , h i s t o r y could play a p r a c t i c a l rather than a symbolic r o l e . How f a r that role was j u s t i f i e d i s a d i f f e r e n t matter. For what lay behind t h i s form of h i s t o r i c a l intervention was a conservative assumption that there was indeed a "lesson of h i s t o r y " that could be learned, that the past could be used to provide a very s p e c i f i c blueprint for a present-day p o l i c y reaction. I t implied too that h i s t o r y was incontrovertible " f a c t " rather than a mass of d i f f e r i n g interpretations themselves h i s t o r i c a l l y constructed. The b e l i e f that h i s t o r i c a l evidence was some higher form of t r u t h was c e r t a i n l y useful i n e s t a b l i s h i n g p a r t i c u l a r p o l i c y positions i n r e l a t i o n to AIDS and, i n the 1960s (but not i n the 1980s), for drugs. But the form of h i s t o r i c a l relevance adopted was more equivocal i n i t s benefits from the viewpoint of the d i s c i p l i n e . I t i m p l i c i t l y downplayed some of i t s subtler strengths i n favor of a focus on h i s t o r i c a l fact and messages that many his t o r i a n s would f i n d problematic. Were hi s t o r i a n s (along with other s o c i a l s c i e n t i s t s ) relapsing into p o s i t i v i s m v i a AIDS? 107 This does not mean that h i s t o r y has no ro l e to play i n the future analysis of AIDS prevention education. AIDS i n i t s l a t e r stages has, as t h i s study has argued, opened up the p o s s i b i l i t y of other forms of h i s t o r i c a l input, which also have relevance to the development of the r o l e of hi s t o r y more generally i n the study of health p o l i c y . History as background i s important. Historians can produce the necessary h i s t o r i c a l perspective. But h i s t o r i c a l s k i l l s can also be applied to provide a c r i t i c a l analysis of almost current developments. Can t h i s type of work bear a r e l a t i o n to policy? History here too can be "policy relevant," although l e s s d i r e c t l y than i n the e a r l i e r "lesson of hi s t o r y " approach. History can provide some of the key tools f o r an o v e r a l l analysis of a p a r t i c u l a r s i t u a t i o n and can demonstrate how inte r e s t s and strategies, a l l i a n c e s and power struggles, within policymaking can s h i f t over time. The point here i s not the "lesson of hi s t o r y " derived from cholera, plague, or the Black Death but a subtler analysis of the nature and determinants of AIDS policymaking. This function f o r the hist o r y of health p o l i c y i s , i t should be noted, more problematic i n Canada than i n the United States; policymakers i n the former remain to be convinced. What are the p a r t i c u l a r t o o l s that h i s t o r y can provide? These are threefold: i t s use of a chronological approach; a sense of continuity as well as of change; and, within an o v e r a l l chronology, the a b i l i t y to interweave d i f f e r e n t t h e o r e t i c a l perspectives and l e v e l s of int e r p r e t a t i o n . AIDS, 108 a "stunning metaphor" i n s o c i a l and welfare terms f o r other p o l i c y areas, has also c r y s t a l l i z e d some of the debates within the h i s t o r i c a l profession over the past decade. H i s t o r i c a l relevance i s one; so too are the debates around chronology. Chronology may not be everything, and hi s t o r i a n s have now shown that much fundamental work i n hi s t o r y cannot be done with a purely chronological approach. Nonetheless, history, more than any other s o c i a l science, knows how to study the passage of time. Another po t e n t i a l strength (and weakness too) l i e s i n the hist o r i a n ' s i n t e r e s t i n change and continuity, i n an i m p l i c i t cynicism about proclaimed r a d i c a l new departures i n p o l i c y . A h i s t o r i c a l strength l i e s i n loc a t i n g p o l i c y change i n past practice, i n seeking out antecedents and preexisting tendencies that feed into p o l i c y development. At i t s worst, t h i s can be an obsessive desire to deny any p o s s i b i l i t y of r e a l change or the relevance of in d i v i d u a l and c o l l e c t i v e e f f o r t ; but, at i t s best, i t provides a powerful means of se t t i n g p o l i c y development i n i t s proper context. In the AIDS area, for example, "new" p o l i c i e s on research, or i l l e g a l drugs, can only be assessed i n the l i g h t of previous tendencies and p o l i c y objectives. One basic h i s t o r i c a l question i s how fa r AIDS brought about p o l i c y change and how f a r such change was dependent on preexisting i n t e r e s t s and tensions. The f i n a l strength of the h i s t o r i c a l approach l i e s i n an area i n which, to observers from other d i s c i p l i n e s , i t i s often considered weak. This i s the presumed a t h e o r e t i c i t y of 109 the subject. Some h i s t o r i c a l work i s indeed atheoretical and t o t a l l y empirical i n approach; but s o c i a l h i s t o r i a n s are mostly t h e o r e t i c a l l y e c l e c t i c rather than devoid of broader i n t e l l e c t u a l context. The borrowing from s o c i o l o g i c a l theory i n the 1960s and 1970s i s one example, as are also the i n t e r e s t and c r o s s - f e r t i l i z a t i o n with s o c i o l o g i c a l concerns. Herein l i e s a strength (and weakness) of h i s t o r y . The h i s t o r i c a l approach i s unique i n i t s generalizing a b i l i t y to deal with a range of primary source material bearing on the interplay of p o l i c y interests and the development of c u l t u r a l constructs and to interweave that complex story with l e v e l s of t h e o r e t i c a l explanation a l l within a framework that takes account of the passage of time. The analysis of the s o c i a l and p o l i c y impact of AIDS and of other issues of health and disease remains an e s s e n t i a l l y c r o s s - d i s c i p l i n a r y question i n which h i s t o r y has a v i t a l r o l e to play; f o r the value of such collaboration l i e s not i n a b l u r r i n g of d i s c i p l i n a r y d i s t i n c t i o n s , namely "p o s t d i s c i p l i n a r y stage," but i n a sharpening of perceptions and a greater awareness of the nature of the boundaries. Implications of the Research Most AIDS prevention education programs focus too much on i n d i v i d u a l behaviour and too l i t t l e on the s o c i a l and p o l i t i c a l factors that shape behaviour. To reduce the incidence of HIV, AIDS education programs need to help people change t h e i r sexual and drug habits. But sexuality and drug use are complicated behaviours, deeply rooted i n 110 c u l t u r a l , s o c i a l , economic, and p o l i t i c a l ground. To attempt to change the behaviour without changing the s o c i a l environment i n which that behaviour occurs ignores much of what we know about health education. I t also reinforces a tendency a l l too common i n public health programs to blame the victims of disease rather than the perpetrators of the s o c i a l conditions that create i l l n e s s . AIDS programs lack a comprehensive approach to prevention and treatment. Few AIDS services integrate prevention and treatment. In r e a l i t y the two are inseparably intertwined. Support groups for HIV-positive people help them to i n i t i a t e and maintain the behaviour changes that w i l l prevent them from i n f e c t i n g others. But too often prevention and treatment compete fo r l i m i t e d resources. Equally important are methodological considerations that emerge from t h i s analysis of AIDS prevention education. The t h e o r e t i c a l models used f o r AIDS prevention education need to incorporate culture and communication more e x p l i c i t l y . Work must be done to define which components of the models are c u l t u r a l l y influenced. The c u l t u r a l connection must be more v i s i b l e i n conceptual discussions and the reports of studies that emanate from the models. Many extant studies do not include discussions of research that might have informed decisions made i n the developing strategies for use with various targeted populations. I t i s not c l e a r whether supplementary I l l d e s c r i p t i v e research was done, or even i f such research was perceived as necessary. Although such formative research may not be p a r t i c u l a r l y expedient, i t i s nonetheless valuable. This suggests a need for a sharper focus on culture to increase the power of the conceptual models. Such a focus requires an altered mindset, p a r t i c u l a r l y on the part of researchers. We no longer have the luxury of designing studies that f a i l to account for the c u l t u r a l d i v e r s i t y that characterizes today's society. I t has been argued i n t h i s study that culture i s a system of meanings and practices that a f f e c t the ind i v i d u a l ' s attitudes and behaviours. This implies a s h i f t from the simple pursuit of variables to more encompassing process of research. U n t i l recently, the gay bars and other establishments o f f e r i n g entertainment g l o r i f i e d the "fast-lane" fantasies so often considered by many outsiders to be synonymous with the gay l i f e - s t y l e . Youth, sex, drugs, p a r t i e s , leather, and to a l e s s e r extent, sado-masochistic practives were held up by the gay male as valued and worthy of being sought a f t e r . Publications, posters, and signs paid ample testimony to the superiur status of t h i s fast-lane, multiple-partnered, anonymous sexual l i f e - s t y l e as the normal way of l i v i n g gay, a way touted for i t s a t y p i c a l l y non-Western, unabashed devotion to please. Gay are s e l f righteously accalimed f o r having broken the shackles of the p u r i t a n i c a l , heterosexual l i f e s t y l e where sexual desire i s met with "measured d e n i a l " (Weeks, 1986). The point i s that the prevalence of t h i s 112 at t i t u d e derives from the nearly universal presence of homophobia i n t h i s culture. Some gay accepts t h i s s e l f - indulgent presentation of l i f e ; others do not. Those who do represent the former group are most seriou s l y a t - r i s k for contracting AIDS. Doing AIDS research i s c r i s i s - d r i v e n . A l l those involved i n t h i s endeavor are reacting with a sense of urgency to an immediate need. With taboo issues that often surround perceptions of AIDS, the emotional and moral stakes might be higher. This makes the research d i f f e r e n t from research on other health-related issues because of the impact on an en t i r e community. Recommendations: AIDS prevention education should be seen as a c u l t u r a l communication process. I t i s appropriate to suggest d i r e c t i o n s that recognize c u l t u r a l d i v e r i s t y i n future research. I hope to i d e n t i f y the l i n e s of research and the methodological s h i f t s necessary to incorporate a c u l t u r a l perspective. From the perspective of a researcher, I have selected topics that I f e e l researchers could best address. My intention here i s to i d e n t i f y options for research and to p r i o r i t i z e t h e i r r e l a t i v e importance. Identifying some should help communities and a l l i e s to set the terms of debate and the f i g h t for resources, etc. i n the future. Numerous avenues are available f o r further exploration of the ways i n which culture i s embedded i n the HIV educational process. Culture can be included i n the 113 consideration of the destination, source, message, channel, and receiver variables i n the creation of health promotion messages. Choosing the destination implies asking whether a message should be designed to impact knowledge, attitudes, or action; whether a message should be processed immediately or i n the future, and whether i t should be designed to cause change or cause resistance to change. Although the same fact u a l information can be found i n various forms, the two basic AIDS prevention messages are: avoid sharing needles, and do not have unprotected sex. The target audience must be well understood to know which messages w i l l be appropriate i n which settings. AIDS prevention messages and programs t y p i c a l l y focus on s k i l l s and/or attitudes. Both f o c i can be enriched by attention to culture. Although communication s k i l l s are often presumed to be generalizable across d i f f e r e n t groups, one research avenue to pursue i s whether some s k i l l s are more c r u c i a l or more appropriate for d i f f e r e n t c u l t u r a l groups. Research might also investigate what counts as the necessary s o c i a l support, strategies to regulate one's behaviour, and motivations to continue new behaviours f o r people i n various c u l t u r a l contexts. Health promotion advocates r e a l i z e that knowledge and s k i l l s alone w i l l not change behaviours; corresponding a t t i t u d i n a l changes must also occur. Attitudes toward behaviours that may be pleasurable, but involve high l e v e l s 114 of r i s k , must be altered, as must perceived norms among referent groups and fear from myths and misconceptions about AIDS. Correcting misinformation i s p a r t i c u l a r l y important fo r the broadly conceived general public. Centered on the bodily experiences of i l l n e s s and death, the s o c i a l meaning of the h i s t o r y of AIDS prevention education intimately touches upon our ideas about sexuality and s o c i e t a l d i v i s i o n s , s o c i a l r e s p o n s i b i l i t y and i n d i v i d u a l privacy, order and i n s t a b i l i t y , and above a l l , health and the prospect of happiness. Understanding how we respond to AIDS as an epidemic i s consequently important not only for what i t reveals about the ways i n which health p o l i c y i s created, but also for what i t implies about our a b i l i t y to meet the challenge of future emerging diseases and longstanding public health problems. Not only i s disease prevention translated into the realm of i n d i v i d u a l e f f o r t , but the only actions t y p i c a l l y considered are those that can be implemented by solo i n d i v i d u a l s . L i t t l e attention i s accorded to possible disease prevention strategies to be used between persons with unequal power, such as consumers versus food producers over p r i c i n g p o l i c i e s or workers versus employers over occupational hazards. This orientation r e f l e c t s the dominant view of indiv i d u a l s as i s o l a t e d atoms, rather than as persons who necessarily are c a r r i e r s of the s o c i a l r e l a t i o n s of c l a s s , race, and gender that permeate the society of which they are a part. Intended or not, 115 attitudes toward the causation and prevention of diseases now a f f e c t our thinking about AIDS and, i f not addressed, threaten to v i t i a t e our s t i l l inadequate response to the HIV epidemic. The overwhelmingly i n d i v i d u a l i s t i c biomedical ori e n t a t i o n of the infectious and chronic disease models and t h e i r t y p i c a l disregard for the p a r t i c u l a r health status of r a c i a l / e t h n i c minorities i n the Canada also has d i s t o r t e d our understanding of the f u l l epidemiology and r e a l i t y of AIDS. Much of the early writing about AIDS, for example, ignored i t s prevalence and unique c h a r a c t e r i s t i c s among people of color. Patterns of homosexuality and heterosexuality are not, however, c u l t u r a l givens; they have d i f f e r e n t s o c i a l constructions within white and minority ethnic communities, and these differences need to be understood and appropriately addressed. Given the multiple s o c i a l and economic d i f f i c u l t i e s that many of these communities face, the s p e c i f i c problems of AIDS need to be approached within an understanding of the issues of employment, education, housing, economic development, and the struggles against the drugs that are flooding inner c i t y communities. Needle exchange programs, for example, should be a l l i e d with drug treatment programs and other a l t e r n a t i v e i n i t i a t i v e s that o f f e r some hope f o r an a l t e r n a t i v e to long-term drug dependence. Most of the issues that are c r i t i c a l for people with AIDS, such as 116 housing and health care, are widespread problems throughout these communities. The epidemiological categories of " r i s k groups" that are fir m l y embedded i n biodeterministic models also tend to mask the cla s s basis of many health issues. Therefore, i t i s necessary to problematize "at r i s k . " AIDS and HIV-related diseases are no exception. O f f i c i a l AIDS s t a t i s t i c s , f o r example, report cases c l a s s i f i e d by age, gender, race/ethnicity, and mode of transmission and do not provide any information on poverty or s o c i a l c l a s s . The i n v i s i b i l i t y of class i n the o f f i c i a l data mirrors the i n v i s i b i l i t y of cla s s i n public understanding and public p o l i c y . As educators move away from thinking s o l e l y i n emergency terms and i n terms of s t a t i c , i n d i v i d u a l i s t i c " r i s k groups," with the health experts i n charge of s t r a t e g i c planning for AIDS, i t should be possible to develop more coalition-based planning and p o l i c y making by involving unions, communityabased, minority, and gay organizations. Other important research areas that need to be explored are women and AIDS and AIDS i n popular society and media. The former i s p a r t i c u l a r l y important because there was very l i t t l e attention given to women and AIDS i n the h i s t o r y of AIDS i n Vancouver. Secondly, there are very few c l i n i c a l studies researching disease etiology of AIDS i n women. In t h i s second decade of AIDS, educators have the opportunity to learn from the f i r s t decade, from the unique 117 h i s t o r y of AIDS i t s e l f , and no longer need to r e l y upon p r i o r and not necessarily appropriate models. In seeking a more u n i f i e d conception of AIDS, educators need to r e t a i n the strengths of both e a r l i e r models and use each to counterbalance the weakness of the other. I f educators can begin t h i s process with AIDS, i t may also open new p o s s i b i l i t i e s f o r dealing with other conditions that may have been too narrowly boxed into e i t h e r the i n f e c t i o u s or chronic disease model. In conclusion, the findings of t h i s study suggest that present education guidelines are unable to i d e n t i f y what message should be communicated and f a i l to i d e n t i f y to whom they should be conveyed. This study does not recommend the use of biodeterministic models of disease prevention which r e f l e c t plague metaphors. Furthermore, commonsense medical prescriptions are so f a m i l i a r that we do not look f o r the deeper "meanings" underlying them. There i s an urgent need to consider sexual issues rel a t e d to HIV prevention because of the stunning l e v e l of ignorance regarding sexuality i n most i f not a l l s o c i e t i e s . For example, how well do e x i s t i n g models of sexual behaviour take account of changing environmental or s i t u a t i o n a l factors? 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By mid-1982, the CDC stressed the homosexuality of those affected and began studies analyzing the i n t e r r e l a t i o n of l i f e s t y l e and AIDS. Analysts linked the epidemic the gay l i b e r a t i o n and the attendant l i f e s t y l e of bars, discos, bathhouses, and anonymous sex. The CDC used the word GRID - Gay Related Immune Deficiency to explain the medical condition. The media and the popular presses stressed that the disease was a r e t r i b u t i o n f o r the sexual revolution and l i b e r a t i o n of the 1960s. Only i n the spring of 1983, a f t e r a year of suggestive data, the CDC recognized that the disease was more than a syndrome of homosexual men and promiscuity. Yet the CDC continued i t s promotion of the " L i f e s t y l e Hypothesis" because of previous outbreaks of other diseases such as Legionnaires' disease. This trend continued u n t i l 1985, when the f i r s t medical a r t i c l e revealing epidemiological evidence for heterosexual transmission. The CDC then adopted "AIDS" and emphasized those groups "at r i s k . "

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