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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 F r a s e r U n i v e r s i t y , 1990 Dip.Ed., The U n i v e r s i t y o f 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 in  THE FACULTY OF GRADUATE STUDIES Department o f E d u c a t i o n a l  Studies  We accept t h i s t h e s i s as conforming t o t h e r e q u i r e d standard  THE UNIVERSITY OF BRITISH COLUMBIA November 1995 °Bruce Marjoribanks,  1995  In  presenting this  degree at the  thesis  in  University  of  partial  fulfilment  of  the  requirements  for  permission for extensive  copying of  this thesis for scholarly purposes may be granted by the  department  or  his  or  her  representatives.  It  is  understood  that  publication of this thesis for financial gain shall not be allowed without permission.  The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  ^OuCU&tfl  advanced  British Columbia, I agree that the Library shall make it  freely available for reference and study. I further agree that by  an  30, WfrT  head of my copying  or  my written  11  ABSTRACT T h i s study d e s c r i b e s how AIDS p r e v e n t i o n programs  education  were c o n s t r u c t e d , d e l i v e r e d , and implemented i n  Vancouver between 1983 and 1994. B i o d e t e r m i n i s t i c models o f d i s e a s e a r e examined through a h i s t o r i c a l a n a l y s i s o f documents t h a t i n c l u d e n e w s l e t t e r s , minutes o f board meetings, p o l i c y  reviews, annual r e p o r t s , and p e r s o n a l  j o u r n a l s . T h i s study assumes t h a t AIDS 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 . The  f i n d i n g s suggest t h a t p r e s e n t e d u c a t i o n a l  g u i d e l i n e s f o r AIDS p r e v e n t i o n a r e unable t o i d e n t i f y what messages should be communicated and f a i l t o i d e n t i f y t o whom they should be conveyed. T h i s study does not recommend t h e use o f b i o d e t e r m i n i s t i c models o f AIDS p r e v e n t i o n e d u c a t i o n which r e f l e c t plague metaphors. Instead, c u l t u r a l l y r e l e v a n t s t r a t e g i e s need t o be developed AIDS p r e v e n t i o n  curricula.  throughout  a l l aspects of  Ill  TABLE OF CONTENTS Abstract  i i  T a b l e o f Contents  i i i  Acknowledgement Chapter One:  Chapter Two:  v I n t r o d u c t i o n and Overview  1  I n t r o d u c t i o n t o t h e Problem AIDS: The "Other" Plague? M e t h o d o l o g i c a l B a s i s o f t h e Study Overview  1 2 6 7  Review o f t h e L i t e r a t u r e  9  C o n s t r u c t s o f Disease .. 9 The Changing Conceptions o f Plague and AIDS as t h e "Other" Plague 10 H i s t o r y o f Plagues 11 H i s t o r y o f AIDS 12 AIDS Metaphors 14 Other Responses t o AIDS 15 Changing Meanings i n Disease... 16 Models o f Disease C o n t r o l 17 People's L i v e s i n t h e Age o f AIDS 19 New P r a c t i c e s i n Gay Communities 20 AIDS P r e v e n t i o n Programs 21 Typology o f AIDS P r e v e n t i o n E d u c a t i o n Programs 25 AIDS P o l i c y i n Canada 28 Summary 30 Chapter Three: A R a t i o n a l e F o r D i s c o u r s e A n a l y s i s  Chapter Four:  33  D e f i n i t i o n of Discourse H i s t o r i c a l Methods Narrative Analysis P o s t s t r u c t u r a l ism Data and Data A n a l y s i s Summary  33 36 39 40 41 47  H i s t o r y o f AIDS P r e v e n t i o n E d u c a t i o n i n Vancouver, 1983-1994  49  The F i r s t E r a , 1983-1987: New Beginnings — The Second E r a , 1987-1992: L o c a l Initiatives The T h i r d E r a , 1992-1994:Towards More Comprehensive Programs....  50 60 79  iv Chapter F i v e :  Chapter S i x :  Discussion......  86  AIDS i n Context AIDS as Discourse Homophobia Homphobia and System M a i n t a i n i n g Ideologies Blaming t h e V i c t i m ( s ) Shamming t h e V i c t i m ( s ) and " V i c t i m s " Shamming Back Summary  86 89 96 98 100 101 104  C o n c l u s i o n s , I m p l i c a t i o n s , and Recommendations  105  Conclusions Implications. Recommendations  105 109 112  References  118  Appendix I  130  V  ACKNOWLEDGEMENTS I would l i k e t o thank t o my  advisor, Professor  Roman, f o r her c r i t i c a l comments and emotional  Leslie  support  d u r i n g the l a s t year. I would a l s o l i k e t o thank, P r o f e s s o r s Jean Barman and N e i l Sutherland, h e l p i n g me,  f o r t h e i r guidance and  understand the p r a c t i c e of h i s t o r y . Two  need t o be acknowledged, P r o f e s s o r LeRoi D a n i e l s ,  in  others who  f u n c t i o n e d as a c r i t i c a l reader and P r o f e s s o r Murray E l l i o t t , who to  e a g e r l y c h a i r e d my  defense.  I would a l s o l i k e  acknowledge the members of the " u n o f f i c i a l  committee,"  S h a r i l y n C a l l i o u , J . Karen Reynolds, P h i l Mondor, and McPhee f o r t h e i r feedback and all,  h e l p f u l d i s c u s s i o n s . Most of  I acknowledge W i l l i a m Gould and the l a t e  Christopher G i l l for t h e i r support  Garnet  encouragement and  Dr. unwavering  d u r i n g the course of the study. T h i s t h e s i s i s my  t r i b u t e t o the memories o f many f r i e n d s , c o l l e a g u e s ,  and  neighbours whose g h a s t l y deaths l e a v e g h o s t l y memories and ravaged communities. I w r i t e so t h e i r v o i c e s w i l l be heard and l e g i t i m a t e d .  ) 1 CHAPTER ONE: INTRODUCTION AND OVERVIEW I n t r o d u c t i o n t o the Problem: In s p i t e o f t e n y e a r s o f community-based and p r o v i n c i a l educational  attempts t o prevent the spread o f AIDS, HIV  r a t e s i n B r i t i s h Columbia are i n c r e a s i n g . The r a t e o f i n c r e a s e has decreased when compared t o the r a t e s o f i n c r e a s e o f the 1980s. (Rekart  & Roy,  1993). The term "HIV  r a t e s " r e f e r s t o the number o f people t h a t t e s t p o s i t i v e t o the v i r u s t h a t causes AIDS. B r i t i s h Columbia by  i m p l i c a t i o n ) a l s o has had and continues  (and Vancouver  t o have t h e  h i g h e s t per c a p i t a i n c i d e n c e r a t e o f HIV i n the  country.  Recent m o n i t o r i n g i n d i c a t e s t h a t over n i n e t y percent new  of the  diagnoses o f HIV i n f e c t i o n are between the ages o f  eighteen  and t w e n t y - f i v e  y e a r s o l d (Rekart  & Roy, 1993;  Brown, 1995). Women a l s o have been i n c r e a s i n g l y diagnosed w i t h HIV i n the  province.  These t r e n d s educational The  i n d i c a t e a problem, namely t h a t r a t i o n a l  approaches t o AIDS education  educational  are n o t f o l l o w e d .  g u i d e l i n e s are unable t o suggest what k i n d s  o f messages should be used and f a i l t o i d e n t i f y t o whom they should be d i r e c t e d . Perhaps, t h e l a c k o f guidance  should  remind us t h a t what and whose messages have been heard and read are n e i t h e r u s e f u l n o r s u f f i c i e n t any more. Many s t u d i e s have examined the AIDS epidemic, b u t they c o n s t i t u t e an a h i s t o r i c a l account o f the epidemic, l a c k i n g s e r i o u s a t t e n t i o n t o the h i s t o r i c a l dimensions o f the problem. I n p a r t i c u l a r , the r e c e n t h i s t o r y o f AIDS p r e v e n t i o n  education  2  i s absent from t h e account o f h i s t o r y o f epidemiology (Fee & Fox, 1988; Mann,  1992a).  Conceived as a d i s c o u r s e a n a l y s i s i n a h i s t o r i c a l c o n t e x t , t h i s study e x p l o r e s and a n a l y z e s one example o f AIDS p r e v e n t i o n e d u c a t i o n . S p e c i f i c a l l y , t h e study l o o k s a t AIDS p r e v e n t i o n e d u c a t i o n programs i n Vancouver between 1983 and 1994 t o attempt t o e x p l a i n how educators have c o n s t r u c t e d , d e l i v e r e d , and implemented Vancouver  t h e programs.  i s a u s e f u l r e s e a r c h s i t e because t h e f i r s t  Canadian AIDS community group was formed here by a s m a l l group o f d o c t o r s . AIDS Vancouver o f f e r e d a number o f c r u c i a l s e r v i c e s i n c o u n s e l l i n g and p u b l i c e d u c a t i o n a t a time when no one e l s e was equipped t o d e a l w i t h AIDS. The o r g a n i z a t i o n ' s AIDS pedagogy was based on t h e premise t h a t people s h o u l d a v o i d engaging i n behaviours t h a t spread HIV. T h i s message was conveyed through a v a r i e t y o f programs which i n c l u d e d s a f e sex p a r t i e s , t h e 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 m e t r o p o l i t a n h o t l i n e . In a d d i t i o n , t h e p r o v i n c i a l government d i s t r i b u t e d a pamphlet  t o a l l B r i t i s h Columbian households i n t h e f a l l  of 1987, and e s t a b l i s h e d a t o l l - f r e e AIDS i n f o r m a t i o n . The M i n i s t r y o f E d u c a t i o n developed an o p t i o n a l Family L i f e program t h a t addressed AIDS f o r grades 7 through 11. AIDS: The Other Plague? Human Immunodeficiency  Virus  (HIV) was f o r m e r l y known  as human T - c e l l lymphotrophic v i r u s - I l l o r HTLV-III, lymphadenopathy  a s s o c i a t e d v i r u s o r LAV, AIDS a s s o c i a t e d  3  virus  (ARV), immunodeficiency-associated v i r u s or IDAV,  severe combined immunodeficiency  or SCID, and a l s o ,  gay  r e l a t e d immune d e f i c i e n c y v i r u s o r GRID. In March 1987,  to  e l i m i n a t e 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 C o n t r o l (CDC)  i n Atlanta,  Georgia  developed a d e f i n i t i o n t o d e s c r i b e the epidemic o f immunosuppression f i r s t seen i n the US among gay and b i s e x u a l men  i n the e a r l y 1980s  and intravenous drug u s e r s . The  d e f i n i t i o n became AIDS (Acquired Immune D e f i c i e n c y Syndrome). Although i t i s b e l i e v e d t h a t HIV  i s the necessary  agent  f o r the compromise o f the immune system which r e s u l t s i n AIDS, many m a n i f e s t a t i o n s are a s s o c i a t e d w i t h AIDS 1990;  (Gould,  F a u c i , 1991). Persons w i t h AIDS (PWAs) have one  or  more severe o p p o r t u n i s t i c i n f e c t i o n s o r m a l i g n a n c i e s such as Pneumocystis  c a r i n i i pneumonia (PCP)  and Kaposi's Sarcoma  (KS), and, although changing due t o t h e r a p e u t i c advances, the v a s t m a j o r i t y o f people w i t h AIDS d i e w i t h i n two o f d i a g n o s i s ( F a u c i , 1991; As much as HIV  years  Brown, 1995).  i s p a r t o f the complex problem  so i s i t s t r a n s m i s s i o n . The spread o f HIV  o f AIDS,  i n f e c t i o n and AIDS  i s the r e s u l t o f human behaviour enacted i n s o c i a l  and  p r i v a t e c o n t e x t s ; 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 p r e v e n t i o n e d u c a t i o n programs have r e l i e d  on  s i m p l i s t i c b i o d e t e r m i n i s t i c models of d i s e a s e t r a n s m i s s i o n and p r o g r e s s i o n (Gould, 1990;  Mann,1992a, 1992b; Fee,  1992).  4  As w e l l , many r e s e a r c h e r s , u s i n g survey methods, have  found  t h e r e i s a g h o s t l y y e t deafening s i l e n c e about AIDS i n the d i s c o u r s e s o f young a d u l t s today (Humm & Kunreuther, P r i e u r , 1990). Young people who  do have a c c u r a t e  1992;  information  about AIDS, f i n d i t awkward and daunting as do many a d u l t s t o b r i n g up s u b j e c t s such as AIDS and s a f e r sex w i t h s e x u a l o r drug-using  p a r t n e r s . Most have d e c i d e d t o take  t h e i r chances r a t h e r than r a i s e such uncomfortable unromantic t o p i c s as p a s t sexual experiences p o t e n t i a l f o r having c o n t r a c t e d HIV & S i e s k y , 1990). The  their  and  (O'Malley,  and  personal  1989;  Kurdek  image of AIDS as a gay d i s e a s e has a l s o  allowed young a d u l t s t o f e e l e r r o n e o u s l y i n v u l n e r a b l e t o HIV.  Young men  who  engage i n unprotected  sex w i t h  other  males do not see themselves a t r i s k because they do c o n s c i o u s l y or p u b l i c l y i d e n t i f y as gay.  not  Gay men's b o d i e s  have a l s o been used as markers f o r death a c r o s s the media which has c o n t r i b u t e d t o d e n i a l among h i g h r i s k groups l e d t o d i s a s s o c i a t i o n from the d i s e a s e Wateny, 1987,  1988;  (Navarre,  and  1988;  Crimp, 1992).  Altman (1988) has s t a t e d t h a t the " d i s t i n c t i o n between behaviour  and  i d e n t i t y , which o f t e n seems academic, i s i n  f a c t v i t a l t o an understanding  of AIDS" (p.301).  Because the  media and the p u b l i c g e n e r a l l y do not make these d i s t i n c t i o n s , gay and AIDS have become c o n f l a t e d , so t h a t p u b l i c p e r c e p t i o n o f homosexuality becomes l a r g e l y i n d i s t i n g u i s h a b l e from i t s p e r c e p t i o n s of AIDS. In a d d i t i o n , Crimp (1992) notes t h a t :  5  the p r i v a c y o f people p o r t r a y e d 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 t h a t these people's d i f f i c u l t p e r s o n a l circumstances, most p r i v a t e thoughts, and emotions have been e x p l o i t e d f o r p u b l i c s p e c t a c l e . But a t the same time, maintained. The p o r t r a y a l of these people's p e r s o n a l circumstances never i n c l u d e s an a r t i c u l a t i o n o f the p u b l i c dimension of the c r i s i s , the s o c i a l c o n d i t i o n s t h a t made AIDS a c r i s i s and c o n t i n u e t o p e r p e t u a t e i t as a c r i s i s , (p.120) People w i t h AIDS are kept s a f e l y w i t h i n the boundaries o f t h e i r private tragedies. The most powerful reason f o r t h i s study i s not j u s t t o p r o v i d e a framework t o examine how  AIDS p r e v e n t i o n e d u c a t i o n  has been c o n s t r u c t e d , d e l i v e r e d , and implemented, but t o determine the s t a t u s of p u b l i c d i s c o u r s e s about AIDS p r e v e n t i o n e d u c a t i o n i n Vancouver. d e s p i t e governmental,  The study r e v e a l s t h a t ,  p u b l i c and p r i v a t e media and  e d u c a t i o n a l attempts t o inform the p u b l i c , the l a r g e r p u b l i c s t i l l misunderstands  AIDS, as a d i s e a s e o r an i l l n e s s . T h i s  has not changed s i n c e AIDS emerged as a p u b l i c l y r e c o g n i z e d d i s e a s e i n the e a r l y 1980s by the GDC. consensus,  In an u n w i t t i n g  o f f i c i a l s from government, m e d i c a l , the media,  and v o l u n t e e r o r g a n i z a t i o n s a l i k e have c o n t r i b u t e d t o the e a r l y p u b l i c misunderstanding, r e s u l t i n g i n the e q u a t i o n of s p e c i f i c marginal groups w i t h AIDS; f o r example, gays, l e s b i a n s , and i n t r a v e n o u s drug-users  (Gould, 1990).  Appendix I. D e s p i t e the f a c t t h a t marginal groups  See  previously  a s s o c i a t e d w i t h the d i s e a s e are no l o n g e r c l a s s i f i e d as the o n l y groups a t r i s k f o r g e t t i n g and t r a n s m i t t i n g the  6  d i s e a s e , they are nonetheless  still  s t i g m a t i z e d by  l i n g e r i n g and entrenched e f f e c t s of the misunderstanding, namely the equation  the  prior  of these  marginal  groups w i t h AIDS and death. In other words, f o r the most p a r t , t h i s equation has t r a n s l a t e d i n t o AIDS = Gays, Lesbians,  IV-drug u s e r s , as w e l l as AIDS = Death.  Methodological  B a s i s o f the Study  A t e x t o r a d i s c o u r s e , i n p o s t s t r u c t u r a l i s t terms, i s not an o b j e c t or a t h i n g , but an o c c a s i o n f o r the i n t e r p l a y o f m u l t i p l e codes and p e r s p e c t i v e s  (Foucault, 1977).  One  must seek t o e x t r a c t and examine the o p e r a t i o n s o r 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 o f d i s c o u r s e a n a l y s i s aims t o d e s c r i b e the s u r f a c e l i n k a g e 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 , c o n t r o l of populations., and the modern s t a t e as r e g u l a t e the o b j e c t s / s u b j e c t s of knowledge and (Foucault,  the  they thought.  1977).  Through t h i s approach, I aim not t o t r a c e c a u s a l i n f l u e n c e s among AIDS p r e v e n t i o n education programs i n Vancouver between 1983-1994. Nor do I adhere t o  strict  h i s t o r i c a l p r i n c i p l e s . However, the f i n d i n g s o f the may  study  change e x i s t i n g i n t e r p r e t a t i o n s o f the h i s t o r y o f AIDS.  I show i n t h i s study how d e l i v e r y , and  events l e d t o the c o n s t r u c t i o n ,  implementation of AIDS p r e v e n t i o n  programs i n Vancouver between 1983  and  education  1994.  Such h i s t o r i c a l r e c o r d s as AIDS Vancouver's p o l i c y documents and n e w s l e t t e r s were u t i l i z e d i n t h i s  study.  7  These d i s c o u r s e s r e p r e s e n t important  s i t e s of p u b l i c  d i s c o u r s e around AIDS p r e v e n t i o n education. The study a l s o has data from p e r s o n a l j o u r n a l s o f those t h a t have been i n v o l v e d i n t h e development o f AIDS p r e v e n t i o n  education.  These documents r e p r e s e n t a d i s c o u r s e f o r t h e development, implementation,  and e v a l u a t i o n o f c u r r i c u l u m and i n s t r u c t i o n  i n t h e community around AIDS p r e v e n t i o n  education.  Overview In t h e next chapter,  I e x p l o r e v a r i o u s d i s c o u r s e s about  the s o c i a l c o n s t r u c t i o n o f d i s e a s e . I a l s o d i s c u s s s e v e r a l s t u d i e s about t h e h i s t o r y o f d i s e a s e 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 c o n t e x t s . I conclude t h e chapter by o u t l i n i n g t h e development o f AIDS p o l i c y i n Canada. In Chapter Three, I d e f i n e " d i s c o u r s e " and o u t l i n e v a r i o u s approaches t o h i s t o r i c a l i n q u i r y and d i s c o u r s e a n a l y s i s . The approaches a r e based on p o s t s t r u c t u r a l c r i t i q u e s o f r e s e a r c h made by v a r i o u s 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 t h e f o r e g o i n g approaches and concerns.  As w e l l , I d i s c u s s t h e data  sources.  In Chapter Four, I o u t l i n e t h e AIDS Vancouver's p r e v e n t i o n e d u c a t i o n between 1983 and 1994. I e x p l a i n t h e major assumptions u n d e r l y i n g t h e c o n s t r u c t i o n , d e l i v e r y , and implementation  o f t h e AIDS p r e v e n t i o n e d u c a t i o n programs. I  a l s o c o n t e x t u a l i z e t h e 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 t h e p r o v i n c e .  8  In the f i f t h chapter, I d i s c u s s the f i n d i n g s o f the study. The d i s c u s s i o n i s informed by the i d e a s p r e s e n t e d e a r l i e r i n t h i s study. F i n a l l y i n Chapter S i x , I o f f e r some c o n c l u s i o n s based on the f i n d i n g s of t h i s study. I a l s o d i s c u s s i t s i m p l i c a t i o n s and the need f o r f u r t h e r r e s e a r c h i n t o AIDS p r e v e n t i o n e d u c a t i o n . I conclude the c h a p t e r by making recommendations w i t h regards t o 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  biological  constructs of disease. Several studies concerning h i s t o r y o f d i s e a s e and AIDS i n c u l t u r a l , s o c i a l , and p o l i t i c a l contexts are reviewed. I conclude  the economic,  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 s e v e r a l i m p l i c a t i o n s f o r AIDS p r e v e n t i o n e d u c a t i o n as w e l l as p r o v i d e context f o r the subsequent a n a l y s i s . Constructs of The  Disease  aspects o f d i s e a s e t h a t we  call  "social  and  b i o l o g i c a l " are p a r t s of a s i n g l e s o c i a l r e a l i t y i n which d i s e a s e i s produced, experienced,  and reproduced,  which the c u l t u r a l meanings of the experience a c t e d upon, and s t r u g g l e d over  (Sontag,  are d e f i n e d ,  1988). Disputes  the meaning o f AIDS have demonstrated t h a t , i n the t w e n t i e t h century, people s t i l l  and i n  find i t d i f f i c u l t  over  late to  separate s c i e n t i f i c knowledge of d i s e a s e t r a n s m i s s i o n from moral judgments about behaviour. i d e o l o g y of the day,  T h i s f i t s w i t h the dominant  which tends t o i n d i v i d u a l i z e most  d i s e a s e s t a t e s as a consequence o f p e r s o n a l behaviour  (Fee,  1992) . Sexual behaviour political was  i s one of the most s h a r p l y c o n t e s t e d  i s s u e s i n the realm of v a l u e s , m o r a l i t y , and what  once known as p r i v a t e l i f e  (Altman, 1988). S e x u a l l y  t r a n s m i t t e d d i s e a s e s make p r i v a t e behaviour  strikingly  p u b l i c and t h e r e f o r e a l e g i t i m a t e s u b j e c t f o r o f f i c i a l discourse  (Fee, 1992). D i f f e r e n t forms of d i s c o u r s e t r y t o  occupy the ground of p u b l i c a u t h o r i t y : t h e o l o g i c a l  10 statements were dominant throughout most o f t h e n i n e t e e n t h century, w h i l e b i o m e d i c a l 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 o f d i s c o u r s e have  i n c l u d e d statements and assumptions  about s o c i a l l y  desirable  s e x u a l p r a c t i c e s . F o r example, marriage i m p l i e s monogamy. The p r o c e s s o f d e f i n i n g and r e d e f i n i n g our understanding o f d i s e a s e u s u a l l y i n v o l v e s a s t r u g g l e between d i f f e r e n t groups who have a stake i n t h e c u l t u r a l c o n s t r u c t i o n o f r e a l i t y , and through i t , public policy  the creation of  (Sontag, 1988; Patton, 1990; Fee, 1992).  Given a p l u r a l i t y o f p o s s i b l e ways t o c o n s t r u c t t h e d i s c o u r s e o f a p a r t i c u l a r d i s e a s e , many groups may be v y i n g for the authority t o define a s p e c i f i c r e a l i t y . Implicit i n the subsequent d i s c u s s i o n i s t h e n o t i o n o f AIDS as plague. The Changing Conceptions o f Plague and AIDS as t h e Other Plague An e a r l y c o n s t r u c t i o n o f d i s e a s e i s t h e n o t i o n o f plague.  Sontag  (1988) s t a t e s , "plague i s t h e p r i n c i p a l  metaphor by which t h e AIDS epidemic i s understood"  (p. 44).  The word plague d e r i v e s from t h e L a t i n " p l a g a " ( s t r o k e , wound, blow) and has been t h e predominant  metaphor f o r  c o l l e c t i v e c a l a m i t y , e v i l , and p e s t i l e n c e . I f a d i s e a s e reached t h e p r o p o r t i o n o f an epidemic and i f i t s name was i n f u s e d w i t h "plague," i t became a g e n e r a l name f o r many f r i g h t e n i n g d i s e a s e s t h a t were not "plague," b u t p l a g u e l i k e . Analogous metaphors f o r plague as a synonym f o r  11 epidemic "can a l s o be found i n t h e l i t e r a t u r e o f c h o l e r a , y e l l o w f e v e r , l e p r o s y , and s y p h i l i s , and now AIDS" (p. 47). The more " d i s g u s t i n g , disempowering,  disgracing"  (Sontag, 1988) t h e d i s e a s e and t h e more connected t o unacceptable and s i n f u l behaviours o f t h e v i c t i m , t h e more l i k e l y t h e d i s e a s e p e r c e i v e d was be t o a "plague." Plague h o l d s both e x p l i c i t and i m p l i c i t n o t i o n s about i l l n e s s and w e l l - b e i n g , good and e v i l . H i s t o r y o f Plagues The concept o f plague has not changed much s i n c e a n c i e n t 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; R i s s e , 1988; Gould, 1990). Before t h e  n i n e t e e n t h century, epidemic d i s e a s e s d i d not have i n d i v i d u a l i d e n t i t i e s , and r e c o r d keeping was minimal a t b e s t . The words "epidemic" and "plague" were o f t e n used synonymously (Rosenberg, 1988; Gould, 1990). An "epidemic," a word d e r i v e d from t h e Greeks t o mean "among t h e p e o p l e , " i s b a s i c a l l y d e f i n e d as an i n f e c t i o u s d i s e a s e which spreads r a p i d l y and whose cause i s not n e c e s s a r i l y known. The term "epidemic" i s more o f t e n a medical term, w h i l e "plague" i s not  (Lilienfeld & Lilienfeld,  1980). Plague, a l t h o u g h  m e d i c a l l y d e f i n e d as more than bubonic  (Yersinia pestis),  can be l i t e r a l l y used t o d e s c r i b e any c a l a m i t y , as w e l l as epidemic d i s e a s e s . L i k e w i s e , i t can be s a i d t o 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, r a t h e r than an i n c i d e n c e o f t h e plague, i s an epidemic, b u t an epidemic i s not n e c e s s a r i l y a plague. As Sontag s t a t e s : " i t i s u s u a l l y epidemics t h a t a r e thought o f as plagues and  12 these mass i n c i d e n c e s of i l l n e s s are understood i n f l i c t e d , not j u s t endured" (Sontag,  1988,  p.  as 45).  I l l n e s s as punishment i s the o l d e s t i d e a of what causes i l l n e s s . Although  Hippocrates wrote t h a t the "wrath o f  c o u l d not be h e l d as the cause of  plagues,  God"  i l l n e s s e s have  been i n t e r p r e t e d by some people as punishments o r r e t r i b u t i o n s f o r having t r a n s g r e s s e d s a c r e d (Lilienfled & Lilienfeld,  1980). J u s t as  r e s p o n s i b l e f o r t h e i r "bad"  beliefs  individuals,  actions, suffer for t h e i r  a c t i o n s by b e i n g punished  with i n j u r y , d i s a b i l i t y o r  so c o u l d masses of people  s u f f e r huge c a l a m i t i e s . Thus, the  i d e a o f AIDS may  death;  be more meaningful t o the degree t h a t i t  i n d i c a t e s "shame" as w e l l as blame. H i s t o r y o f AIDS In g e n e r a l , h i s t o r i c a l s t u d i e s show  t h a t AIDS has gone  through t h r e e d i s t i n c t phases. A c c o r d i n g t o Jonathan Mann (1992), the h i s t o r y of AIDS i s d i v i s i b l e i n t o t h r e e discursive periods: silence, i n i t i a l discovery,  and  m o b i l i z a t i o n . The p e r i o d of s i l e n c e s t a r t e d d u r i n g the  mid-  1970s, when HIV  the  events o f HIV  f i r s t appeared and began t o spread. As  i n f e c t i o n and t r a n s m i s s i o n are s i l e n t , and  the  c l i n i c a l m a n i f e s t a t i o n s o f i n f e c t i o n s d i d not become apparent f o r months o r years l a t e r , many i n d i v i d u a l s remained i g n o r a n t o f the new u n t i l 1981,  epidemic.  when the d i s e a s e AIDS was  From the mid-1970s f i r s t recognized,  HIV  spread s i l e n t l y and u n n o t i c e d t o f i v e c o n t i n e n t s ; a t l e a s t 100,000 people became i n f e c t e d .  13 The  r e e o g n i t i o n of AIDS i n the U n i t e d S t a t e s i n  ended the p e r i o d of g h o s t l y s i l e n c e and  inaugurated  the  p e r i o d o f i n i t i a l d i s c o v e r y , 1981-1985. During t h i s the c a u s a t i v e v i r u s , HIV,  was  1981  time,  d i s c o v e r e d , i t s modes o f  t r a n s m i s s i o n were i d e n t i f i e d , and t e s t s were developed  to  d e t e c t HIV  i n f e c t i o n . Studies using t h i s information  technology  produced t h r e e v i t a l f a c t s about the epidemic  (Mann, 1992a). During the p e r i o d , 1981 people were HIV  many more  i n f e c t e d than had AIDS ( i . e . AIDS i s the t i p  of the i c e b e r g of HIV HIV  t o 1985,  and  i n f e c t i o n ) . Second, the time between  i n f e c t i o n and development of the d i s e a s e i s measured i n  months, u s u a l l y i n y e a r s and perhaps i n decades. T h i r d , s t u d i e s d u r i n g the mid-1980s showed t h a t HIV t r u l y epidemic, r e g i o n s o f the  infection  a f f e c t i n g , although not u n i f o r m l y , a l l world.  However, t h i s p e r i o d i n v o l v e d much more than d i s c o v e r y ; s u b s t a n t i a l r e s e a r c h was  biomedical  a l s o d i r e c t e d a t the  i n d i v i d u a l and s o c i a l dimensions of H I V - r e l a t e d r i s k behaviour.  was  In the s o c i a l s c i e n c e s HIV/AIDS^related  and concerns focused a t t e n t i o n on the l i m i t s o f knowledge about human behaviour.  and  questions  our  Around the world,  s e e k i n g t o l e a r n about HIV/AIDS-related behaviours  those by  b u i l d i n g upon knowledge of s e x u a l i t y and s e l f - i n j e c t i n g drug behaviour was  found t h a t l i t t l e r e l i a b l e o r u s e f u l i n f o r m a t i o n  a v a i l a b l e on these s u b j e c t s (Mann, 1992a). In a d d i t i o n ,  the s o c i a l dimensions of HIV/AIDS became a major c h a l l e n g e , as s o c i a l s c i e n t i s t s witnessed  the emergence o f  d i s c r i m i n a t i o n , s t i g m a t i z a t i o n , and other forms o f  HIV-  14 r e l a t e d p r e j u d i c e , h y s t e r i a , and i n d i v i d u a l o r c o l l e c t i v e forms o f w i t c h - h u n t i n g (Mann, 1992a). The t h i r d phase i n the h i s t o r y o f AIDS s t a r t e d i n the mid-1980s when many communities and n a t i o n s developed  local  and n a t i o n a l AIDS p r e v e n t i o n programs. In g e n e r a l , the programs have the f o l l o w i n g key elements: i n f o r m a t i o n content, message and m a t e r i a l s development, p e r c e p t i o n s o f HIV/AIDS, audiences, a t t i t u d e s towards s e x u a l i t y , i n s t i t u t i o n a l networks, l i n k a g e w i t h h e a l t h and  social  s e r v i c e s , p o l i t i c a l and s o c i a l l e a d e r s h i p , assessment c a p a c i t y , 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 1992a). Problems are p r e s e n t i n some o f these  (Mann,  elements.  AIDS Metaphors Although AIDS may plague i s a statement  be p l a g u e - l i k e , t o say t h a t AIDS i s a of l i m i t e d medical s i m i l a r i t i e s . A  plague i s a d i s e a s e w i t h a v e r y h i g h and r a p i d i n c i d e n c e of m o r t a l i t y and/or m o r b i d i t y a f t e r exposure.  I t can  d i s s e m i n a t e r a p i d l y through a p o p u l a t i o n and i s most o f t e n c o n t a g i o u s and spread by c a s u a l c o n t a c t ( L i l i e n f e l d & Lilienfeld,  1980). During the Bubonic plague, people d i d not  know t h a t f l e a s on r a t s were s p r e a d i n g the i n f e c t i o u s  agent.  The medical knowledge of AIDS, today, r e v e a l s none o f t h e s e c h a r a c t e r i s t i c s . However, i t i s an acute,  infectious,  p r o g r e s s i v e , c h r o n i c , and a b s o l u t e l y l e t h a l v i r u s .  The  plague metaphor o f AIDS i n v i t e s the i d e a t h a t AIDS i s c o n t a g i o u s . Combining w i t h the f e a r of death and the unknown and o t h e r metaphors such as " s i n " and "enemy," AIDS may understood,  as Sontag suggests, as "premodern" (p. 4 6 ) .  be  15 AIDS " r e v i v e s t h e a r c h a i c i d e a o f a t a i n t e d community t h a t 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 o f t h e AIDS/death/plague metaphor i s i t s c o n n e c t i o n and  t o f e a r , e s p e c i a l l y homophobia  i t s r e l a t i o n s h i p t o t h e d i s e a s e . J e f f r e y Weeks (1986), a  philosopher,  writes:  The mechanisms o f a moral p a n i c are w e l l known: the d e f i n i t i o n o f a t h r e a t i n a p a r t i c u l a r event; the s t e r e o t y p i n g o f t h e main c h a r a c t e r s i n t h e mass media as p a r t i c u l a r s p e c i e s o f monsters (the p r o s t i t u t e as ' f a l l e n woman,' t h e paedophile as ' c h i l d molester'); a s p i r a l l i n g escalation of the p e r c e i v e d t h r e a t , l e a d i n g t o t h e t a k i n g up o f a b s o l u t i s t p o s i t i o n s and t h e manning o f t h e moral b a r r i c a d e s ; t h e emergence o f an imaginary s o l u t i o n - i n tougher laws, moral i s o l a t i o n , a symbolic c o u r t a c t i o n ; f o l l o w e d by t h e subsidence o f t h e a n x i e t y , w i t h i t s v i c t i m s l e f t t o endure t h e new proscriptions, s o c i a l climate or legal p e n a l t i e s . In s e x u a l matters, t h e e f f e c t s o f such a f l u r r y can be d e v a s t a t i n g , e s p e c i a l l y when i t touches, as i t does i n t h e case o f homosexuality, on p u b l i c f e a r s , (p. 45) These a r e some o f t h e responses t o AIDS as w e l l as o t h e r diseases. Other Responses to .Plague  Guenter B. R i s s e  (1988), a medical  historian,  used an  e c o l o g i c a l model, based on t h e n o t i o n o f miasmas, t o e x p l o r e the dynamic r e l a t i o n s h i p between t h e b i o s o e i a l environment and t h e human experience  o f epidemic d i s e a s e s . He examined  the s o c i a l context o f epidemic d i s e a s e s and t h e ways i n which p o l i t i c a l and h e a l t h o r g a n i z a t i o n s have h i s t o r i c a l l y responded t o c r i s e s . R i s s e s e l e c t e d t h r e e case s t u d i e s f o r a n a l y s i s : t h e bubonic plague i n Rome i n 1656,  the cholera  16 epidemic o f 1832, and t h e 1916 p o l i o m y e l i t i s epidemic i n New York C i t y . R i s s e ' s account shows how s o c i a l l y marginal  groups,  e t h n i c m i n o r i t i e s , and t h e poor have o f t e n been h e l d r e s p o n s i b l e f o r epidemic d i s e a s e s : t h e Jews were blamed f o r the B l a c k Death i n Europe, t h e I r i s h were blamed f o r c h o l e r a i n New York C i t y , and I t a l i a n s were accused  of introducing  p o l i o i n t o Brooklyn. He d i s c u s s e s t h e frequent of c i v i l  infringement  l i b e r t i e s i n t h e name o f p u b l i c w e l f a r e , from t h e  hanging o f v i o l a t o r s o f p u b l i c h e a l t h r e g u l a t i o n s i n seventeenth-century quarantines  Rome t o t h e t r a v e l r e s t r i c t i o n s and  o f c h i l d r e n introduced during the twentieth-  century p o l i o epidemic.  R i s s e notes t h e d r a c o n i a n measures  of i s o l a t i o n and quarantine generated  considerable public  p a n i c and d i s t r e s s , w h i l e they g e n e r a l l y f a i l e d t o stem t h e p r o g r e s s o f epidemic d i s e a s e . From t h e f o u r t e e n t h c e n t u r y t o the p r e s e n t , d e s p i t e enormous changes i n t h e p r a c t i c e o f medicine and s o c i a l p o s i t i o n o f p h y s i c i a n s , t h e r e has been remarkable c o n t i n u i t y i n how t h e p r o f e s s i o n has responded t o the t h r e a t o f contagion - i s o l a t e "the  diseased."  Changing Meanings i n Disease C h a r l e s E. Rosenberg (1988), a h i s t o r i a n , has p r o v i d e d a panoramic view o f t h e h i s t o r i c a l changes i n t h e d e f i n i t i o n o f d i s e a s e , from s i c k n e s s conceived  i n largely  individual  terms as an imbalance between an organism and i t s environment, t o t h e i d e a o f each d i s e a s e as a s p e c i f i c e n t i t y , w i t h a s p e c i f i c cause t o be d i s c o v e r e d by l a b o r a t o r y r e s e a r c h . He f i n d s t h a t t h e AIDS epidemic i l l u s t r a t e s both a  17 c o n t i n u i n g dependence on medicine  and a r e f l e c t i o n o f  c u l t u r e i n which i t o c c u r s . He argues t h a t s i n c e t h e r e i s powerful t r a d i t i o n by some people  o f s e e i n g epidemics  as  the r e s u l t o f s o c i a l c o l l a p s e , decay and God's wrath, i t may be d i f f i c u l t t o e x t r i c a t e 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 c o n t r o v e r s y i s bound t o g e t h e r by s e v e r a l themes. Rosenberg (1988) s t a t e s t h a t "One  i s the way  t h a t r e l a t i o n s h i p s between the  medical  p r o f e s s i o n and s o c i e t y are s t r u c t u r e d around i n t e r a c t i o n s l e g i t i m a t e d by the presumed e x i s t e n c e of d i s e a s e . Another theme i s the n e g o t i a t e d aspect o f the d i s e a s e as a s o c i a l phenomenon" (p. 12). A c c o r d i n g t o Rosenberg (1988), p e r c e p t i o n o f d i s e a s e may to  "the  have any one o f many r e l a t i o n s h i p s  a p o s s i b l e b i o l o g i c a l s u b s t r a t e . In t h i s c o n t e x t , AIDS  a r r i v e d as a novel and f r i g h t e n i n g s t r a n g e r , p o s i n g i n s t a r k form the q u e s t i o n s about the c u l t u r a l and  biological  meanings o f d i s e a s e " (p. 30). Models o f Disease C o n t r o l David Rayside and E v e r t L i n q u i s t  (1992), two  Canadian  community a c t i v i s t s , m a i n t a i n i t i s p o s s i b l e t o d i s c e r n a fundamental s t r u g g l e between two  opposing groups i n the  u n f o l d i n g of AIDS p r e v e n t i o n e d u c a t i o n i n Canada.  One,  drawing on elements o f e o n t a i n - a n d - c o n t r o l models, was on a w e l l - e n t r e n c h e d t r a d i t i o n a l approach o f the  based  medical  e s t a b l i s h m e n t and most p u b l i c h e a l t h b u r e a u c r a c i e s . For most the 1980s, "the a c t i o n s o f many p u b l i c o f f i c i a l s r o u t i n e s developed  followed  t o d e a l w i t h o t h e r d i s e a s e s : f o c u s i n g on  p r o t e c t i n g those not y e t i n f e c t e d , t r e a t i n g the s i c k as  18 i r r e s p o n s i b l e and i n need o f p o l i c i n g , l e a v i n g drug t e s t i n g i n i t i a t i v e s t o pharmaceutical hypercautious  companies, and r e t a i n i n g  methods f o r approving  drugs"  (p. 50). T h i s  p e r s p e c t i v e d i d not e n l i s t t h e p a r t i c i p a t i o n o f community groups and p o l i t i c i a n s : t h e c r i t i c a l t a s k s were undertaken by medical d o c t o r s , r e s e a r c h e r s , and e p i d e m i o l o g i s t s . C l a s h i n g w i t h t h i s c o n t a i n - a n d - c o n t r o l d i s c o u r s e has been  a more i n c l u s i o n a r y d i s c o u r s e . Community a c t i v i s t s ,  reformist public health o f f i c i a l s ,  and some d o c t o r s  with  l a r g e HIV/AIDS p r a c t i c e s a t t a c h e d more s i g n i f i c a n c e t o p a t i e n t s ' r i g h t s . They c a l l e d f o r comprehensive and f r a n k e d u c a t i o n programs aimed a t t h e e n t i r e p o p u l a t i o n , generous f u n d i n g o f community groups t o work w i t h those most a f f e c t e d by t h e d i s e a s e , e x t e n s i v e d i s t r i b u t i o n o f condoms and needles  f o r intravenous u s e r s , r e c o g n i t i o n o f t h e  s i g n i f i c a n c e o f d i s c r i m i n a t i o n a s s o c i a t e d w i t h AIDS and HIV i n f e c t i o n , g r e a t e r funding f o r and c o o r d i n a t i o n o f medical f a c i l i t i e s s p e c i f i c a l l y f o r AIDS, a l a r g e r and more g e o g r a p h i c a l l y d i s p e r s e d network o f d o c t o r s t r a i n e d t o d e a l w i t h HIV and AIDS, more funds f o r r e s e a r c h , and g r e a t e r involvement  i n t h e p o l i c y process on t h e p a r t o f community  groups and people w i t h AIDS. What gave t h i s view s p e c i a l prominence i n AIDS p o l i c y was t h a t i t s proponents, working w i t h i n community groups o r i n t h e i r own medical p r a c t i c e s , had borne much o f t h e burden o f p r o v i d i n g s e r v i c e s t o people l i v i n g w i t h AIDS and had generated s a f e r - s e x e d u c a t i o n a l m a t e r i a l s f o r the p o p u l a t i o n s most s e r i o u s l y a f f e c t e d by t h e epidemic. (Rayside & L i n g u i s t , 1992, p. 51) Governmental avoidance o f AIDS i n t h e f i r s t p u b l i c o f f i c i a l s without  few y e a r s  t h e e x p e r t i s e t o address  left  t h e broad  19 range o f e d u c a t i o n a l and s o c i a l i s s u e s posed by the  disease,  and e s t a b l i s h e d 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 d e l i v e r y and agenda s e t t i n g r o l e s .  The  development o f community-based AIDS programs c h a l l e n g e s n o t i o n t h a t a "plague" c o u l d o n l y be c o n t a i n e d  the  by  scientists. Peoples'  L i v e s i n the Age  o f 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 o f AIDS i n r e l a t i o n t o the gay movement i n the U n i t e d S t a t e s , A u s t r a l i a , and the  United  Kingdom. He p r o v i d e s a u s e f u l h i s t o r i c a l a n a l y s i s o f n a t i o n a l d i f f e r e n c e s i n d e a l i n g s w i t h the AIDS epidemic. notes t e n s i o n between two  k i n d s of approaches, one  He  focusing  on t e s t i n g and s c r e e n i n g e f f o r t s , the o t h e r on l a r g e - s c a l e education  and s e r v i c e programs. The  emphasis i n each  r e f l e c t s d i f f e r e n c e s i n p o l i t i c a l c u l t u r e s and a d d i t i o n t o the s t r e n g t h and degree of  country  ideologies i n  political  o r g a n i z a t i o n of the gay community i n each n a t i o n . Altman argues t h a t i n areas where gays have a l r e a d y carved out a p l a c e f o r themselves i n the p o l i t i c a l p r o c e s s ,  gay  o r g a n i z a t i o n s have made t h e i r s t r o n g e s t c o n t r i b u t i o n s t o h e a l t h p o l i c y . However, Altman's a n a l y s i s i s weakened by h i s f a i l u r e t o d i s c u s s the two  conceptions  about the  educational  s t r a t e g i e s used t o c o n f r o n t AIDS which emerged d u r i n g e a r l y p o l i c y formation  (Fineberg, 1992;  Sepulveda, 1992).  The  f i r s t assumes t h a t because o f the ways AIDS i s t r a n s m i t t e d i t w i l l a f f e c t some groups r a t h e r than o t h e r s , and  therefore  s o c i e t y as a whole w i l l be b e s t p r o t e c t e d by t a k i n g measures  20 a g a i n s t those a f f e c t e d groups o r i n d i v i d u a l s . The second c o n s i d e r s AIDS/HIV t o be an enemy o f a l l people and thus deems i t necessary t o p r o t e c t a l l o f s o c i e t y ' s members a g a i n s t i n f e c t i o n w i t h HIV. New P r a c t i c e s i n Gay Communities The d e c l i n e o f new HIV i n c i d e n c e among c o h o r t s o f gay men i n t h e North America and Europe has o f t e n been c i t e d as one o f t h e most r a p i d and e x t e n s i v e changes i n human behaviour ever observed  (Mann, 1992b). Ample evidence  i n d i c a t e s t h a t p r e v e n t i o n e f f o r t s slowed t h e spread o f HIV i n gay communities and t h a t many men adopted s a f e r sex p r a c t i c e s t o a v o i d HIV i n f e c t i o n  ( F a u c i , 1991; Mann, 1992a,  Mann, 1992b). To date, most data on t h e i n c i d e n c e o f HIV among gay men i n v o l v e s w e l l - e s t a b l i s h e d urban gay communities i n North America, Western and Northern Europe, and t o a l e s s e r e x t e n t i n Mexico and B r a z i l  (Mann, 1992a, 1992b). Important  cohort  s t u d i e s o f gay men over t h e p a s t t e n y e a r s p r o v i d e v a r i o u s h i s t o r i c a l views o f t h e epidemic. In many urban gay communities, incidence  t h e r e has been a dramatic d e c l i n e i n HIV  ( F a u c i , 1991; Brown, 1995). Less i n f o r m a t i o n  e x i s t s about new HIV sero-prevalenee among b i s e x u a l men. However, a number o f s t u d i e s among STD c l i n i c p a t i e n t s show lower HIV p r e v a l e n c e among b i s e x u a l than  self-identified  homosexual men (Mann, 1992a; Mann, 1992b). L a r g e - s c a l e behaviour change was observed f i r s t  i n 1981  i n San F r a n c i s c o and New York C i t y , and by 1984 i t had reached Western Europe and Canada (Mann, 1992a, 1992b,  21 Rayside & L i n g u i s t , 1992, HIV  1994). The d i f f e r e n t p a t t e r n s of  i n c i d e n c e r i s e and d e c l i n e suggest d i f f e r e n t l e v e l s o f  a d o p t i n g and m a i n t a i n i n g s a f e r sex. For example> c o u n t r i e s such as the Netherlands and France had an e a r l y d e c l i n e i n i n c i d e n c e and then a p l a t e a u , s u g g e s t i n g both a c o n t i n u e d l e v e l o f u n p r o t e c t e d a n a l i n t e r c o u r s e , and, probably, a r e l a t i v e l y open s e x u a l network ( F a u c i , 1991). In many cities,  s t u d i e s c o n f i r m t h a t s a f e r sex i s f a r from  u n i v e r s a l , w i t h a l a r g e v a r i a t i o n among groups i n the same country, a c r o s s geographic boundaries and i n d i f f e r e n t c u l t u r a l s e t t i n g s (Mann, T a r a n t o l a , & N e t t e r , 1992). AIDS P r e v e n t i o n E d u c a t i o n Programs A l l AIDS p r e v e n t i o n e d u c a t i o n programs develop messages which are c a r r i e d through s p e c i f i c m a t e r i a l s . The p r o c e s s of message/material  development i n  programs i n v o l v e s e x t e n s i v e  and repeated c o n s u l t a t i o n w i t h t a r g e t audiences and i n c l u d e s f i e l d t e s t i n g . However, message content has been ambiguous. For example, the warning a g a i n s t exchanging may  have avoided o f f e n c e , but i t was  "bodily  interpreted  fluids"  incorrectly  as i n c l u d i n g sweat, s a l i v a , and t e a r s , f o r which t h e r e i s no evidence t o suggest a p o s s i b l e r o l e i n HIV t r a n s m i s s i o n ( S i e g e l , Grodsky, & Herman, 1986;  F a u c i , 1991;  Brown, 1995).  AIDS p r e v e n t i o n e d u c a t i o n programs u s u a l l y promote p u b l i c awareness, but the programs a l s o focus on t a r g e t e d audiences  such as intravenous drug-users or gays.  (Mann,  1992a; Brown, 1995). In a d d i t i o n , more advanced programs t r y t o access not o n l y easy-to-reaeh t a r g e t groups such  as  s c h o o l c h i l d r e n and h e a l t h workers, but a l s o the h a r d - t o -  22 reach, such as p r o s t i t u t e s and t h e i r c l i e n t s ,  self-injecting  drug u s e r s , and o u t - o f - s c h o o l youth. Some communities  fear  s t i g m a t i z a t i o n and d i s c r i m i n a t i o n , which i n h i b i t s t a r g e t e d p r e v e n t i o n (Brunet, 1991; Cohen, 1991; Rayside & L i n g u i s t , 1992,  1994). AIDS p r e v e n t i o n e d u c a t i o n programs u t i l i z e d  several  channels. Major channel c h o i c e s i n c l u d e mass media, media"  "little  ( p o s t e r s , brochures, f l y e r s ) , and f a c e - t o - f a c e  approaches. While an advanced program w i l l g e n e r a l l y mix a l l t h r e e , i t u s u a l l y emphasizes approaches i n which d i s c u s s i o n and d i a l o g u e a r e p o s s i b l e  (Mann, 1992a, Osburn, 1992). There  i s consensus t h a t mass media channels c r e a t e awareness and s e t t h e agenda, but i n t e r p e r s o n a l channels i n f l u e n c e behaviour ( S t o l l e r & R o t h e r f o r d , 1989; Edgar, Hammond, Lee, & Vicki,  1990; Hornik, 1991).  Programs v a r y w i d e l y r e g a r d i n g t h e e x p l i c i t n e s s o f s e x u a l content and t h e extent t o which moral judgements accompany t h i s i n f o r m a t i o n . An important i s s u e i s t h e a t t i t u d e towards condoms and t h e extent t o which they a r e promoted. More advanced programs a d j u s t t h e l e v e l o f e x p l i c i t n e s s i n c o n s u l t a t i o n w i t h t a r g e t audiences and a v o i d a p r e j u d i c i a l moral dimension. In such programs, t h e i m p l i c i t and e x p l i c i t a t t i t u d e towards condoms i s p o s i t i v e and,  w h i l e t a r g e t e d , t h e condom promotion e f f o r t  reaches t h e g e n e r a l p u b l i c . Many s t u d i e s show t h a t  also attitudes  towards condoms a r e s t r o n g l y r e l a t e d t o use ( B a r l i n g & Moore, 1990; Ross, 1992). Condom use i s a l s o l i n k e d t o t h e e f f i c a c y o f condoms as a b a r r i e r t o HIV i n f e c t i o n  (Robert &  23 Rosser,  1990; S t r a d e r & Baemen, 1991). Those who  misunderstand t h e c a u s a l r e l 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 w i t h condoms o f poor q u a l i t y , a r e more l i k e l y t o b e l i e v e t h a t condoms a r e an i n e f f e c t u a l b a r r i e r t o HIV i n f e c t i o n . While HIV/AIDS i s f i r s t a h e a l t h i s s u e , 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 and  impacts a r e now w i d e l y a p p r e c i a t e d  dimensions  (Brown, 1995).  N a t i o n a l HIV/AIDS p r e v e n t i o n e d u c a t i o n programs o f t e n form a link  w i t h and generate  i n s t i t u t i o n a l networks i n c l u d i n g  community-based and n o n g o v e r n m e n t a l o r g a n i z a t i o n s . Yet, many o f these o r g a n i z a t i o n s a r e i l l - e q u i p p e d t o do a j o b which r e q u i r e s o f f i c i a l o v e r s i g h t and r e s o u r c e s  (Silverman,  1992). There a r e two v i t a l dimensions t o t h e l i n k a g e between HIV/AIDS p r e v e n t i o n e d u c a t i o n programs and community-based and non-governmental o r g a n i z a t i o n s . F i r s t ,  i n f o r m a t i o n about  HIV/AIDS t r a n s m i s s i o n i s p r o v i d e d t o c l i e n t s along  with  i n f o r m a t i o n 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 t o needle-exchange programs. More advanced HIV/AIDS p r e v e n t i o n e d u c a t i o n programs a r e c a r e f u l l y t a i l o r e d t o e s t a b l i s h linkages with a v a i l a b l e s e r v i c e s and/or w i t h s e r v i c e s  already  developed  s p e c i f i c a l l y i n a s s o c i a t i o n w i t h t h e h e a l t h promotion program (Mann, 1992a). The second dimension o f l i n k a g e i n v o l v e s i n t e g r a t i o n o f HIV/AIDS p r e v e n t i o n e d u c a t i o n w i t h i n e x i s t i n g h e a l t h and s o c i a l s e r v i c e s . Advanced programs u s u a l l y w i l l e s t a b l i s h c l o s e 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 h e a l t h , f a m i l y and  planning,  s e x u a l l y t r a n s m i t t e d d i s e a s e c o n t r o l . The c h a l l e n g e i s  to f i n d educational  s t r a t e g i e s which m a i n t a i n  optimum l e v e l  o f e f f e c t i v e n e s s among those programs t h a t operate  alongside  and w i t h i n e x i s t i n g networks (Sepulveda, F i n e b e r g ,  & Mann,  1992) . While AIDS p r e v e n t i o n  education  programs a l l r e q u i r e  some l e v e l o f s o c i a l and p o l i t i c a l acceptance, t h e e x t e n t and manner o f involvement o f p o l i t i c a l and s o c i a l  leaders  v a r i e s w i d e l y . More advanced programs have e x p l i c i t and h i g h l y v i s i b l e l i n k a g e s with s e l e c t e d p o l i t i c a l  and/or  s o c i a l l e a d e r s ; however, l e a d e r s have l e f t AIDS  prevention  programs f o r two reasons (Sepulveda, 1992). F i r s t ,  since  AIDS became a h e a l t h problem, emerging l e a d e r s have r e c e i v e d intense p o l i t i c a l pressure  and media a t t e n t i o n , o f t e n t o t h e  i r r i t a t i o n o f s u p e r v i s o r s and educators who a r e r e l u c t a n t t o share t h e l i m e l i g h t (Rayside  & L i n g u i s t , 1992; Brown, 1995).  Second, t h e l a c k o f q u i c k and t a n g i b l e 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  f a t i g u e among program workers and v o l u n t e e r s  (Rayside &  L i n g u i s t , 1992, 1994; Brown, 1995). The  i n s t i t u t i o n a l r e l a t i o n s h i p s between HIV/AIDS  prevention  education  programs and n a t i o n a l AIDS committees  have i n v o l v e d i s s u e s o f s t a f f , budget, p o l i c y , and s t r a t e g y formation.  More advanced programs have adequate s t a f f o f  s u f f i c i e n t grade and p r o f e s s i o n a l i s m , a budget, and c l o s e l i n k a g e w i t h o v e r a l l n a t i o n a l AIDS program and p o l i c y process.  I n a d d i t i o n , advanced programs a r e d e c e n t r a l i z e d  25 from headquarters  and c a p i t a l c i t i e s t o d i s t r i c t  community l e v e l s . D e c e n t r a l i z a t i o n has  and  i n v o l v e d the  d e l e g a t i o n o f both r e s p o n s i b i l i t y and a u t h o r i t y ( i n c l u d i n g f i n a n c i a l resources)  t o l o c a l s i t e s o f i n f l u e n c e . AIDS i s a  v e r y c o s t l y d i s e a s e and  f i n a n c i n g the care o f people  with  AIDS and p r e v e n t i o n programs remains one o f the b i g g e s t c h a l l e n g e s f a c i n g AIDS educators  and o t h e r s  (Mann,  1992;  Sepulveda, 1992). Typology o f AIDS P r e v e n t i o n Education  Programs  In g e n e r a l , AIDS p r e v e n t i o n e d u c a t i o n programs can d i v i d e d i n t o t h r e e groups (Perrow & G u i l l e n , 1990; Rosser,  1990;  Mann, 1992a, 1992b; Osburn, 1992).  Robert & Information  type programs are focused on i n f o r m a t i o n . Empowering are moderately more complex and  be  types  i n c l u d e e f f o r t s t o enhance  self-empowerment as w e l l as p r o v i d e i n f o r m a t i o n . F i n a l l y , community advocacy type programs not o n l y d e l i v e r i n f o r m a t i o n and address  self-empowerment, they a l s o  s t r e n g t h e n community advocacy. Broadly c o n s i d e r e d , these t h r e e program types correspond  to different levels i n conceptualizing health  promotion i t s e l f . The one  l i m i t e d viewpoint  (information  type) d e f i n e s i t s t a s k as p r o v i s i o n o f i n f o r m a t i o n . Such programs o f t e n disseminate  t h i s i n f o r m a t i o n from a s i n g l e  source, u s i n g mass media channels  and t i m e - l i m i t e d campaigns  i n an e f f o r t t o reach many people  (Osburn, 1992).  The  i n f o r m a t i o n p r o v i d e d i s o f t e n imbued w i t h consensus a t t i t u d e s r e g a r d i n g r i s k behaviours.  As HIV/AIDS i s  c o n s i d e r e d a h e a l t h problem, i n f o r m a t i o n emanates from  26 h e a l t h i n s t i t u t i o n s o u r c e s . L i t t l e a t t e n t i o n may  be g i v e n t o  h e a l t h and s o c i a l s e r v i c e l i n k a g e s (Perrow & G u i l l e n ,  1990;  Robert & Rosser, 1990). I n f o r m a t i o n type programs have been observed d u r i n g the f i r s t y e a r or so of n a t i o n a l AIDS program a c t i v i t y , w i t h subsequent  e v o l u t i o n t o the second  and t h i r d types (Mann, 1992a; Osburn, 1992). However, i n f o r m a t i o n type programs may  p e r s i s t beyond t h e  initial  p e r i o d i f a n a t i o n a l AIDS program operates i n an ambivalent and f r a n k l y h o s t i l e s o c i a l and p o l i t i c a l environment 1992;  Rayside & L i n q u i s t , 1992; The second  Fee,  (Mann,  1992).  stage i n t h i n k i n g about h e a l t h  promotion  r e f l e c t s awareness o f the need t o examine c l o s e l y the m o t i v a t i n g f a c t o r s and c o n s t r a i n t s o p e r a t i n g on the i n d i v i d u a l s whose p a s t , p r e s e n t , and f u t u r e b e h a v i o u r s are at  i s s u e . The i n d i v i d u a l l o c u s of c o n t r o l p e r s p e c t i v e l e a d s  to  concern t h a t i n f o r m a t i o n be w e l l - t a r g e t e d (Osburn,  1992).  I n f o r m a t i o n i s t h e r e f o r e designed w i t h i n p u t from t a r g e t audiences and i n c l u d e s e x p l i c i t a t t e n t i o n t o h e a l t h and s o c i a l s e r v i c e s needed t o 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 g e n e r a l l y d e s c r i b e d as a g l o b a l problem which concerns everyone; awareness o f the s o c i a l dimension i s r e i n f o r c e d by c l e a r messages about nondiscrimination. Empowering type programs use a broader mix of w i t h i n c r e a s i n g emphasis on person t o person  media,  approaches  (Mann, 1992a, 1992b). The a t t i t u d e toward s e x u a l i t y i s n e u t r a l o r p o s i t i v e and can be q u i t e e x p l i c i t depending  upon  27 the t a r g e t audience; t h e approach t o condom promotion i s a l s o t a r g e t e d . R e c o g n i z i n g t h a t people a r e i n f l u e n c e d and reached by many channels and i n s t i t u t i o n s , t h e program seeks i n t e g r a t i o n i n t h e n a t i o n a l h e a l t h system and forms a l l i a n c e s w i t h o t h e r s e c t o r s o f government and w i t h o t h e r agencies and groups. R e a l i z i n g t h a t people a r e b e s t reached i n and through t h e i r communities,  a n a t i o n a l HIV/AIDS h e a l t h  promotion program seeks d e c e n t r a l i z a t i o n  (Mann, 1992a).  O v e r a l l , t h e empowering type program i s i n t e g r a t e d w i t h i n , and supported by, a n a t i o n a l AIDS program, t h e h e a l t h s e c t o r , and t h e broader community  (Mann, 1992a; Rayside &  L i n g u i s t , 1992; Osburn, 1992). I n sum, t h e emphasis o f t h e empowering type program i s on m o t i v a t i o n 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 o f h e a l t h promotion r e c o g n i z e s t h e broad p o l i c y and s o c i a l dimensions o f h e a l t h  promotion.  I n f o r m a t i o n p r o v i d e d by community advocacy type programs, developed w i t h t a r g e t audiences, emphasizes s o l i d a r i t y and the need t o p r o t e c t t h e r i g h t s and d i g n i t y o f H I V - i n f e c t e d persons. The community advocacy type program i s d e c e n t r a l i z e d , so t h a t i n f o r m a t i o n i s p r o v i d e d from w i t h i n many d i f f e r e n t i n s t i t u t i o n s and o r g a n i z a t i o n s (Mann, 1992a; Rayside & L i n g u i s t ,  1992).  The community advocacy type program d i s t i n g u i s h e s i t s e l f , p a r t i c u l a r l y i n t h e areas o f l i n k a g e w i t h h e a l t h and s o c i a l s e r v i c e s and i t s r e l a t i o n s h i p w i t h s o c i a l and p o l i t i c a l l e a d e r s h i p 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 i n c l u d e elements o f Types I and I I ,  28 but go beyond these t o c o n s i d e r the c u l t u r a l , economic, political  and  impediments t o promotion o f h e a l t h . For community  advocacy type programs, i n f o r m a t i o n about HIV/AIDS i s o n l y u s e f u l when i t t a k e s both i n d i v i d u a l and s o c i a l  realities  i n t o account. T h e r e f o r e , such i s s u e s as women's c a p a b i l i t y i n a g i v e n s o c i a l system t o r e f u s e i n t e r c o u r s e without a condom, o r the a v a i l a b i l i t y o f t r u l y c o n f i d e n t i a l  diagnostic  o r support s e r v i c e s , o r the r e a l i t i e s o f 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 c o s t , a r e seen as c e n t r a l concerns (Mann, 1992a, 1992b; Rayside & L i n g u i s t ,  1992).  AIDS P o l i c y i n Canada AIDS p o l i c y i n Canada has moved through t h r e e d i s t i n c t stages (Rayside & L i n d g u i s t , 1992,  1994). These stages do  not f o l l o w Mann's h i s t o r y o f AIDS. The f i r s t began i n the e a r l y 1980s, as many p o l i t i c i a n s and o f f i c i a l s i g n o r e d the epidemic o r responded v e r y c a u t i o u s l y . The second stage began i n mid-1985, as media g r e a t l y i n t e n s i f i e d  public  i n t e r e s t and concern i n Canada and when the development HIV b l o o d t e s t s r a i s e d new  of  i s s u e s f o r debate. In t h i s  p e r i o d , the Canadian governments began t o make s i g n i f i c a n t , but u s u a l l y ad hoc, commitments t o AIDS programs. As the number o f AIDS cases i n c r e a s e d , community groups grew i n s i z e and p r o l i f e r a t e d , w i t h new m i l i t a n t v o i c e s broadening the range and i n t e n s i t y o f c r i t i c i s m d i r e c t e d a t governmental  i n a c t i v i t y . The t h i r d p e r i o d began i n the  s p r i n g o f 1988.  P r o t e s t s by v a r i o u s community groups  and  a c t i v i s t s a t the N a t i o n a l AIDS Conference put p r e s s u r e on  29 all  l e v e l s o f government t o develop coherent AIDS  strategies. In the c o n f r o n t a t i o n between government p o l i c y m a k e r s and AIDS a c t i v i s t s , the impact o f two f a c t o r s must be kept i n mind (Rayside & L i n d q u i s t , 1992, first  1994; Brown, 1995). The  i s t h e presence o f p u b l i c h e a l t h i n s u r a n c e throughout  Canada. There i s uneven a c c e s s t o medical p e r s o n n e l w i t h an i n t e r e s t and e x p e r t i s e i n AIDS, p a r t i c u l a r l y o u t s i d e major c i t i e s . There a r e a l s o s e r i o u s f i n a n c i a l burdens on people w i t h HIV and AIDS who wish t o use drugs t h a t a r e not "approved" by p r o v i n c i a l a u t h o r i t i e s , but few o f t h e s e problems are as severe as i n the more p r i v a t i z e d  American  h e a l t h c a r e system. The second important f a c t o r t o keep i n mind i s t h e e f f e c t o f U. S. developments on Canadian p u b l i c p o l i c y and community a c t i v i s m  (Rayside & L i n g u i s t , 1992,  1994).  U n l i m i t e d a c c e s s t o the American media meant t h a t Canadians were made aware o f the d i s e a s e a t about the same time as Americans, b e f o r e s u b s t a n t i a l numbers o f Canadians became s i c k . Such l e a d time may w e l l have encouraged a calmer p u b l i c r e a c t i o n ; t h e r e were fewer cases o f p a n i c about c a s u a l c o n t a c t i n Canada than t h e r e were i n the U n i t e d S t a t e s , and more r e a d i n e s s on the p a r t o f most media  outlets  t o a v o i d s e n s a t i o n a l i z a t i o n . The view t h a t AIDS was j u s t i f i a b l e r e t r i b u t i o n f o r an immoral l i f e s t y l e has never had as s t r o n g a p u b l i c v o i c e as i n the U n i t e d S t a t e s , B r i t a i n , or A u s t r a l i a Brown, 1995).  (Rayside & L i n g u i s t , 1992,  1994;  30  Although a l l Canadians are covered by p u b l i c l y - f u n d e d medical insurance, h e a l t h care i s p r i m a r i l y 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 p r o v i n c e s o r g a n i z e the d e l i v e r y o f s e r v i c e s , c h a r t e r i n g and n e g o t i a t i n g p r o f e s s i o n a l bodies t o determine  with various  fee schedules,  funding  h o s p i t a l s f o r c a p i t a l and o p e r a t i n g expenditures as w e l l as t o e s t a b l i s h r e g i o n a l and l o c a l p u b l i c h e a l t h networks.  The  f e d e r a l government p l a y s an important r o l e through i t s spending power. L e g i s l a t i o n has a l s o i n c r e a s e d , e s p e c i a l l y w i t h regards t o the Canada H e a l t h A c t . On s e v e r a l o c c a s i o n s i n the p a s t , the f e d e r a l government agreed t o match p r o v i n c i a l c o n t r i b u t i o n t o h o s p i t a l and medical i n s u r a n c e as l o n g as t h e i r h e a l t h d e l i v e r y systems met criteria  (Rayside & L i n g u i s t , 1992). The  f e d e r a l spending  a s e t of minimum influence of  i s a l s o e v i d e n t i n the f a c t t h a t most  m e d i c a l r e s e a r c h g r a n t s i n Canada come from f e d e r a l l y - f u n d e d a g e n c i e s . In a more g e n e r a l way,  the f e d e r a l government has  i n f l u e n c e d the p r o v i n c e s by c o o r d i n a t i n g the flow o f i n f o r m a t i o n and o r g a n i z i n g 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 h e a l t h f i e l d L i n g u i s t , 1992,  1994;  (Rayside &  Brown, 1995).  Summary T h i s chapter began w i t h a d i s c u s s i o n about the p l u r a l i t y o f the s o c i a l c o n s t r u c t i o n s of d i s e a s e and r e p r e s e n t a t i o n s o f AIDS as the "other" plague. I t i s d i f f i c u l t to  separate the  and s o c i a l dimensions  s c i e n t i f i c , moral,  political,  from d i s e a s e c o n s t r u c t i o n s . The  concept of plague as understood by s o c i e t y has changed s i n c e  31 a n t i q u i t y and h o l d s both e x p l i c i t and  i m p l i c i t n o t i o n s about  i l l n e s s and w e l l - b e i n g . Combining w i t h the f e a r o f death  and  the unknown, the concept o f plague p r o v i d e s the b a s i s f o r s o c i e t y ' s i n s i s t e n c e t h a t s o c i a l l y m a r g i n a l i z e d groups are r e s p o n s i b l e f o r epidemics and a f f e c t s how  the  medical  p r o f e s s i o n has responded t o the t h r e a t of contagion, the i d e o l o g y o f " i s o l a t e the d i s e a s e d " R i s s e , 1988).  (Rosenberg,  Despite changes i n the medical  d i s e a s e d u r i n g the l a s t century, of AIDS as a plague and attendant  through 1988;  d e f i n i t i o n of  society's prevailing fear s o c i a l stigmas has  not  been e l i m i n a t e d . Thus AIDS r e v i v e s the i d e a o f a t a i n t e d community and c o n t r i b u t e s t o homophobia. I t i s no s u r p r i s e , then, t h a t the f i r s t approach t o AIDS p r e v e n t i o n was  based on " c o n t a i n - a n d - c o n t r o l " models o f  education  disease  p r o t e c t i o n . F o r t u n a t e l y , community a c t i v i s t s , r e f o r m i s t public health o f f i c i a l s ,  and some d o c t o r s a t t a c h e d more  s i g n i f i c a n c e t o p a t i e n t s ' r i g h t s and ended the c a l l  for  i s o l a t i o n of PWAs. AIDS p r e v e n t i o n education has been hampered because of two  a n t a g o n i s t i c conceptions  f i r s t assumes t h a t educators  about AIDS t r a n s m i s s i o n .  The  must t a r g e t t h e i r s t r a t e g i e s  towards p a r t i c u l a r groups t h a t have h i g h i n c i d e n t r a t e s of HIV  i n f e c t i o n . The  second c o n s i d e r s i t necessary  a l l o f s o c i e t y ' s members a g a i n s t HIV suggests t h a t HIV  to protect  i n f e c t i o n . Evidence  r a t e s are d e c l i n i n g i n the gay  communities  o f North America and Europe. To date, t h i s d e c l i n e has been o f t e n c i t e d as one  of the most r a p i d and e x t e n s i v e changes  i n human behaviour ever observed. However, s t u d i e s c o n f i r m  32  t h a t s a f e r sex i s f a r from u n i v e r s a l . T h i s has been a problem i n t h e h i s t o r y o f AIDS s i n c e t h e p e r i o d o f i n i t i a l discovery  (1981-1985). S o c i a l s c i e n t i s t s noted t h a t  there  was l i t t l e r e l i a b l e o r u s e f u l i n f o r m a t i o n on knowledge o f s e x u a l i t y 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,  l i n k a g e w i t h h e a l t h and s o c i a l s e r v i c e s , and funding l i m i t e d t h e e f f e c t i v e n e s s o f AIDS p r e v e n t i o n  have  education  s t r a t e g i e s . Three types o f s t r a t e g i e s e x i s t and correspond t o d i f f e r e n t l e v e l s i n c o n c e p t u a l i z i n g h e a l t h promotion itself. AIDS p o l i c y i n Canada has moved through t h r e e phases. I t was not u n t i l 1988 t h a t p r e s s u r e government l e d t o t h e p r o p o s a l  on a l l l e v e l s o f  f o r t h e development o f a  coherent AIDS s t r a t e g y . In a d d i t i o n t h e h i s t o r y o f AIDS p o l i c y i n Canada has o f t e n been d i f f e r e n t from e x i s t i n g h i s t o r i e s o f AIDS.  other  33  CHAPTER THREE: A RATIONALE FOR DISCOURSE ANALYSIS  In t h i s chapter, I d e f i n e what d i s c o u r s e i s and then I o u t l i n e v a r i o u s approaches t o h i s t o r i c a l i n q u i r y and d i s c o u r s e a n a l y s i s . 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 r e s e a r c h made by v a r i o u s s o c i a l s c i e n t i s t s . S i n c e so much of AIDS and AIDS e d u c a t i o n i n v o l v e s p e r c e p t u a l and l i n g u i s t i c metaphors and c o n s t r u c t s , I chose a combination  o f methods t o a n a l y z e  the  f u n c t i o n s o f d i s c o u r s e about and on AIDS i n p o l i c y documents. My  approach i s informed by p o s t s t r u c t u r a l n o t i o n s  o f d i s c o u r s e and the formation o f 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 d i s c o u r s e ? D i s c o u r s e i s the ways i n which a language as a m a t e r i a l p r a c t i c e c o n s t r u c t s and r e p r e s e n t s s o c i a l s u b j e c t s . D i s c o u r s e a l s o means the s i l e n c e s i n t e x t s , i n language, and the unspoken  conventions  o f s i g n i f i c a t i o n . Discourse, sometimes spoken of as t e x t , i s one o f 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 s u b j e c t s . D i s c o u r s e s and t h e i r r e l a t e d 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 f u n c t i o n s o f power: they d i s t r i b u t e  the  f u n c t i o n s o f power. They are power's r e l a y s throughout the modern s o c i a l system. F o u c a u l t  (1983) maintains  that:  i n e f f e c t , what d e f i n e s a r e l a t i o n s h i p of power i s t h a t i t i s a mode of a c t i o n which does not a c t d i r e c t l y and immediately upon an a c t i o n , on e x i s t i n g a c t i o n s or on those which may a r i s e i n the p r e s e n t or the f u t u r e . A power r e l a t i o n s h i p can o n l y be a r t i c u l a t e d on the b a s i s o f two  34 elements which are each i n d i s p e n s a b l e i f i t i s r e a l l y t o be a power r e l a t i o n s h i p , (p. 220) Power must not be thought of merely as n e g a t i v e ,  as  r e p r e s s i o n , domination, or i n h i b i t i o n . On the c o n t r a r y , i t must always be seen as "a making p o s s i b l e , " as an opening up o f f i e l d s i n which c e r t a i n k i n d s o f a c t i o n and a r e brought about. As power d i s p e r s e s i t s e l f ,  production 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 c o n s t i t u t e s e n t i r e domains of a c t i o n , knowledge, and s o c i a l b e i n g by 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 p a r t , we  l a r g e l y make o u r s e l v e s  shaping  i n which, f o r the most (Foucault, 1983). In  these  domains, human beings become the i n d i v i d u a l s , the s u b j e c t s , t h a t the domains make us. T h i s p h r a s i n g ,  of course, makes  t h i n g s sound more d e t e r m i n i s t i c than they are i n f a c t , t h e r e i s no s u b j e c t t o be determined i n advance, the  for  subject  comes t o be whatever o r whoever he o r she i s o n l y w i t h i n t h i s s e t o f d i s c u r s i v e and n o n d i s c u r s i v e f i e l d s  (Hall,  1992) . What F o u c a u l t means when he says t h a t power a c t s upon a c t i o n s i s p r e c i s e l y t h a t i t r e g u l a t e s the formation o f subjectivities.  " I n d i v i d u a t i o n , " then i s , argues  the space i n which we  are most r e g u l a t e d by the  our  Foucault, ruling  d i s c i p l i n e s of language, s e x u a l i t y , economics, c u l t u r e , and psychology. The  study o f d i s c o u r s e , then,  understanding  how  leads i n e v i t a b l y to  m a t e r i a l " r e a l i t i e s " a c t upon the a c t i o n s  of o t h e r s , t h a t i s , of a l l of us, no matter where and d i f f e r e n t l y p l a c e d we privilege  are i n the g r i d of i d e n t i t y  these r e a l i t i e s c o n s t i t u t e . F o u c a u l t  how  and  (1983) argues  35  t h a t power i s deeply r o o t e d i n s o c i a l r e l a t i o n s , but t h a t t h i s f a c t should not be taken  fatalistically:  For t o say t h a t t h e r e cannot be a s o c i e t y without power r e l a t i o n s i s not t o say e i t h e r t h a t those which are e s t a b l i s h e d are necessary, or, i n any case, t h a t power c o n s t i t u t e s a f a t a l i t y a t the h e a r t o f s o c i e t i e s , such t h a t i t can not be undermined. Instead I would say t h a t the a n a l y s i s , e l a b o r a t i o n , and b r i n g i n g i n t o q u e s t i o n of power r e 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 o f freedom a r e permanent p o l i t i c a l t a s k s i n h e r e n t i n a l l s o c i a l r e l a t i o n s , (p. 223) D i s c u r s i v e a n a l y s i s aims t o show how  events and  simultaneity within ostensibly different f i e l d s  can  t r a n s f o r m e n t i r e domains o f knowledge p r o d u c t i o n . example, the l a s t decade has witnessed  their  For  the p r o d u c t i o n  and  p r o l i f e r a t i o n o f a number o f competing AIDS d i s c o u r s e s . According to Dickinson  (1995):  many of [the AIDS d i s c o u r s e s ] are c h a r a c t e r i s t i c a l l y a p o c a l y p t i c i n tone, from the d i r e p r e d i c t i o n s o f biomedicine t o the s e n s a t i o n a l h e a d l i n e s i n the media; from the c a l l s f o r mandatory t e s t i n g and quarantine o f the p a r t o f J e s s e Helms and o t h e r r i g h t - w i n g p o l i t i c i a n s t o the h o l o c a u s t imagery and g r a p h i c s employed by L a r r y 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 i n t e r v e n t i o n s o f i n t e l l e c t u a l s l i k e Susan Sontag t o the a r r e s t i n g v i s i o n s c r e a t e d by a r t i s t s l i k e Tony Kushner. (p. 227) In a d d i t i o n t o these " o f f i c i a l '  1  d i s c o u r s e s t h a t the AIDS  c r i s i s has produced, the AIDS c r i s i s has a l s o produced a number o f " u n o f f i c i a l " c o u n t e r - d i s c o u r s e s . By u s i n g d i s c o u r s e a n a l y s i s , I i d e n t i f y how  documents o r d i s c o u r s e s  have m o b i l i z e d c e r t a i n n o t i o n s and meanings o f AIDS and AIDS p r e v e n t i o n e d u c a t i o n . I a l s o examine how AIDS have been suppressed  over  time.  c e r t a i n n o t i o n s of  36  H i s t o r i c a l Methods A h i s t o r y seeks t o reproduce and i n t e r p r e t c o n c r e t e events as they a c t u a l l y o c c u r r e d i n time. There i s no  single  standard by which we can i d e n t i f y t r u e h i s t o r i c a l knowledge (Shafer, 1974;  S c o t t , 1989). Rather, t h e r e are c o n t e s t s ,  more o r l e s s c o n f l i c t u a l , more o r l e s s e x p l i c i t , about  the  substance, uses, and meanings of the knowledge t h a t we  call  h i s t o r y . My aim i n t h i s study i s t o show c o n f l i c t s i n the meanings as evidenced i n the documents. T h i s p r o c e s s i s about the e s t a b l i s h m e n t and c h a l l e n g e and p r o t e c t i o n c o n t e s t a t i o n o f hegemonic d e f i n i t i o n s o f h i s t o r y  and  (Scott,  1989) . H i s t o r i a n s c r e a t e nuanced d e s c r i p t i o n s f o r s e v e r a l purposes. Some seek t o c r e a t e the p a s t as  contemporaries  would have experienced i t . Others t r y t o d i s c e r n p a t t e r n s i n events over time, and thus i n t e r p r e t primary sources i n ways t h a t would have a s t o n i s h e d contemporaries. Many h i s t o r i a n s want both t o d i s c o v e r h i s t o r i c a l p a t t e r n s and  accurately  r e f l e c t the l i v e d experience of the p a s t (Shafer, 1974).  In  a d d i t i o n , h i s t o r i a n s are u s u a l l y c o n s c i o u s of the c u l t u r a l l y s p e c i f i c , and hence are wary o f p o s i t i n g u n i v e r s a l p r i n c i p l e s . H i s t o r i a n s o f t e n d i s a g r e e about major i s s u e s of t h e o r y and p r a c t i c e ; however, h i s t o r i a n s share a number of historiographic principles  (Shafer, 1974;  S c o t t , 1989).  The  t h r e e most important of these p r i n c i p l e s i n the c o n t e x t of d i s e a s e are c a u t i o u s adherence t o s o c i a l c o n s t r u c t i o n i s m ,  37  profound s k e p t i c i s m about h i s t o r i c i s m , and wariness about presentism  (Fee & Fox,  1988).  S o c i a l c o n s t r u c t i o n i s t s hold that h i s t o r i c a l r e a l i t y i s c r e a t e d by people; t h a t 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 c o n s t r u c t i o n i s t s i n c l u d e  the data o f the b i o l o g i c a l and p h y s i c a l s c i e n c e s a n a l y s i s , arguing  in their  t h a t the i n s t i t u t i o n s and procedures  of  t h e s e 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 . H i s t o r i a n s , though sympathetic t o  social  c o n s t r u c t i o n i s t i n t e r p r e t a t i o n s o f the h i s t o r y o f  disease  and medical p r a c t i c e , r e j e c t the r a d i c a l r e l a t i v i s m t h a t d e n i e s t h a t knowledge i n the b i o l o g i c a l s c i e n c e s can independent o f i t s s o c i a l context others  (Fee & Fox,  be  1988).  remain u n c e r t a i n about t h e proper scope o f the  of s o c i a l c o n s t r u c t i o n . Consequently, t h i s study t h a t the concept o f AIDS i s i m p l i c a t e d i n the c o n s t r u c t i o n o f the phenomena i t appears t o assembling a m i s c e l l a n e o u s c o l l e c t i o n o f apparently  theory  considers  social  describe,  instances,  l a c k i n g coherence other than i t s u p p l i e s  (Christian-Smith, The  Still  1990;  Smith, 1990).  second p r i n c i p l e , s k e p t i c i s m o f h i s t o r i c i s m , i s  l e s s c o n t r o v e r s i a l . Few  h i s t o r i a n s now  i n s i s t , as most o f  our p r e d e c e s s o r s d i d u n t i l a few decades ago, o r n a t i o n s evolve  that societies  or u n f o l d toward g o a l s t h a t may  discerned with h i s t o r i c a l research:  be  from, f o r example,  a u t h o r i t a r i a n i s m toward democracy, from i n e q u a l i t y t o counter-hegemony, and  from p r i m i t i v e t o mature, even from  38  c a p i t a l i s m t o a c l a s s l e s s s o c i e t y . Although  most s c h o l a r s  argue t h a t i n some areas, medical knowledge, f o r i n s t a n c e , b e n e f i c i a l advance has o c c u r r e d i n r e c e n t c e n t u r i e s , h a r d l y anyone s t i l l  i n s i s t s t h a t the human c o n d i t i o n i n g e n e r a l  has  been p r o g r e s s i n g as a r e s u l t o f i n e x o r a b l e h i s t o r i c a l change (Fee & Fox,  1988;  Rosenberg, 1988). T h i s study assumes t h a t  h i s t o r i c a l meanings are always embedded i n our  conceptions  of d i s e a s e ; t h a t i s , the h i s t o r y o f epidemiology  must be  concerned w i t h the r e l a t i o n s h i p between s c i e n t i f i c c u l t u r a l assumptions. H i s t o r i a n s must e x p l o r e the  and social  c o n t e x t s i n which " d i s e a s e s " such as AIDS are produced, reproduced,  d e f i n e d , analyzed,  and a c t e d upon.  The t h i r d p r i n c i p l e , wariness about presentism, p r o b a b l y the most w i d e l y shared among those who  is  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 p a s t s e e i n g i t o n l y from the p o i n t of view of our own r a t h e r than u s i n g primary people  o r g a n i z e d and  sources t o understand  1990; may  Fee,  time, how  other  i n t e r p r e t e d t h e i r l i v e s . The AIDS  epidemic can tempt h i s t o r i a n s t o venture w i t h events  by  i n the p a s t even though we  facile  analogies  know b e t t e r  (Gould,  1992). T h i s study notes t h a t the AIDS epidemic  mark the f i r s t time a p o p u l a t i o n s u f f e r i n g from a  d i s e a s e has p l a y e d such a l a r g e r o l e both i n the making p u b l i c p o l i c y through l o b b y i n g and p o l i t i c a l a c t i v i t i e s , through the p r o v i s i o n o f d i r e c t p a t i e n t c a r e , s e r v i c e s , and h e a l t h e d u c a t i o n . N e v e r t h e l e s s  supportive the  r e s e a r c h e r ' s r o l e i s t o s t r u g g l e w i t h the problems o f  and  39  p r e s e n t i s m . Thus, i n the r e p r e s e n t a t i o n o f AIDS as epidemic, who  i s speaking and who i s l i s t e n i n g ? Or perhaps more  importantly,  t o whom are we speaking and t o whom are we  listening? Narrative  Analysis  Many contemporary h i s t o r i a n s see the i n t e r p r e t a t i v e i s s u e s i m p l i c i t i n data c o l l e c t i o n t o the c o n s t r u c t i o n o f a h i s t o r i c a l n a r r a t i v e (Tuchman, 1994). However, n a r r a t i v e s are u s u a l l y l o o s e l y formulated, are almost i n t u i t i v e , and use  terms d e f i n e d by the a n a l y s t . N a r r a t i v e  t y p i c a l l y takes the p e r s p e c t i v e  analysis  o f the t e l l e r ,  r a t h e r than  t h a t o f the s o c i e t y . I f one d e f i n e s n a r r a t i v e as a s t o r y w i t h a b e g i n n i n g , middle, and end t h a t r e v e a l s someone's experiences,  n a r r a t i v e s take many forms, are t o l d i n many  s e t t i n g s , b e f o r e many audiences, and have v a r i o u s degrees o f connection  t o a c t u a l events o r 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 o f n a r r a t i v e , d e f i n i n g s t r u c t u r e s o f s t o r i e s , and conclusions and  are o f t e n d e f i n e d p o e t i c a l l y and a r t i s t i c a l l y ,  are q u i t e context  bound (Atkinson,  1990). Hence,  r e p r e s e n t a t i o n becomes a concern f o r the h i s t o r i a n and o t h e r s o c i a l s c i e n t i s t s . Therefore,  i t i s necessary t o c a u t i o n  r e a d e r s t h a t AIDS i s being r e d e f i n e d as a d i s e a s e  o f black,  L a t i n o , and m i n o r i t y communities, women, and c h i l d r e n (Morales & Bok, 1992; new  Dickinson,  1995). Now t h a t the r a t e o f  i n f e c t i o n i s d e c l i n i n g among the gay community, t h e  s p e c i f i c a s s o c i a t i o n o f AIDS/homosexuality i s f a d i n g , and  40  new a s s o c i a t i o n s a r e b e i n g made. The h i s t o r i c a l p r o c e s s o f the d e f i n i t i o n and r e d e f i n i t i o n o f d i s e a s e i d e o l o g i c a l l y contested  thus c o n t i n u e s as  and s h i f t i n g t e r r a i n , r e g u i r i n g a  method o f a n a l y s i s t h a t a l l o w s f o r a d i s c u r s i v e r e a d i n g t o be combined w i t h a h i s t o r i c a l one. Poststructuralism S t r u c t u r a l i s m 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 o b j e c t t o s t r u c t u r a l i s m because i t e v i c t s human agency from human h i s t o r y ; t h a t i s , people become t h e p a s s i v e b e a r e r s o f l i n g u i s t i c codes and d e t e r m i n i s t i c approaches t o ideology.  People a r e l i t t l e more than v e c t o r s  determinations. Structures  of structural  e x i s t as t h e o r g a n i z i n g  centers  o f s o c i a l a c t i o n ; persons a r e i n every sense n o t o n l y t h e c r e a t i o n s o f such structures,, b u t m a n i f e s t a t i o n s and  r u l e s c r e a t e d by s o c i a l s t r u c t u r e s  o f elements  (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 t h e d i f f i c u l t y o f reading  i n t e n t i o n s from speech a c t s o r t e x t s and eschew  f i n a l answers through p o s t s t r u c t u r a l a n a l y s i s . P o s t s t r u c t u r a l i s t s urge c a r e f u l r e c o n s i d e r a t i o n t e x t s and t h e o r y f o r m u l a t i o n ,  c o n s t i t u t i o n , and  of written conventional  i n t e r p r e t a t i o n . To some extent, because t h e c o n v e n t i o n a l canons o f i n t e r p r e t a t i o n r e f l e c t dominant v a l u e s (and w r i t e r s ) , they obscure t h e v i r t u e s o f w r i t e r s , perspectives,  ideas,  and v a l u e s deemed marginal o r o p p o s i t i o n a l  41  (Manning & Cullum-Swan,  1994). In t h i s sense,  p o s t s t r u c t u r a l i s m t u r n s a t t e n t i o n t o t h e margins and r e v e r s e s t h e u s u a l adherence t o dominant c u l t u r a l Texts,  values.  i n p o s t s t r u c t u r a l i s t terms, a r e not o b j e c t s o r  t h i n g s . The p o s t s t r u c t u r a l i s t mode o f d i s c o u r s e  analysis  i m p l i e s t h a t t h e 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 t o a l a r g e degree t h e i n t e r p r e t a t i o n s o f  AIDS which represent  a r e s e l e c t e d as s o c i a l l y r e l e v a n t , t h a t  will  the future s o c i a l r e a l i t y of the disease.  Data and Data A n a l y s i s The personal  following texts  are u t i l i z e d i n t h i s a n a l y s i s :  journals, newsletters,  from board meetings, and annual personal  p o l i c y documents,  minutes  r e p o r t s . Access t o t h e  j o u r n a l s was secured by a number o f i n f o r m a l  meetings t h a t took p l a c e d u r i n g t h e f a l l o f 1994. An educator who was a v o l u n t e e r to w r i t e r s of the personal  a t AIDS Vancouver i n t r o d u c e d  journals.  meetings, I was g i v e n p e r m i s s i o n  me  A f t e r numerous  t o u t i l i z e the journals i n  my study because they f e l t my a n a l y s i s would be c r i t i c a l f o r any f u r t h e r policy  development o f AIDS p r e v e n t i o n  education  and  i n Vancouver. Both o f t h e w r i t e r s have been and a r e  a c t i v e i n t h e development o f AIDS p r e v e n t i o n  education  and  have been g i v e n pseudonyms i n t h i s study. T h e i r j o u r n a l s a r e not o n l y r i c h i n d e s c r i p t i o n , but a l s o i n r e f l e c t i o n s . of the w r i t e r s i s s t i l l  One  a c t i v e i n Vancouver AIDS community.  The o t h e r w r i t e r i s now working n a t i o n a l l y and i n t e r n a t i o n a l l y on v a r i o u s AIDS p r o j e c t s . My a n a l y s i s has  42  been made a v a i l a b l e t o them f o r p o s s i b l e misunderstandings and  feedback. We had s e v e r a l meetings over t h e l a s t y e a r and  no misunderstandings o c c u r r e d . AIDS Vancouver has kept r e c o r d s s i n c e i t s i n c e p t i o n i n the s p r i n g o f 1983. I u t i l i z e d s e v e r a l n e w s l e t t e r s  including  AIDS Vancouver: The Volunteer Voice Newsletter. B. C. Persons With AIDS Newsletter. and Contact. P o l i c y reviews were done s p o r a d i c a l l y over t h e l a s t decade and board meetings were h e l d monthly s i n c e 1983. These d i s c o u r s e s  were u t i l i z e d i n t h e study and  are made a v a i l a b l e t o t h e p u b l i c by archives  t h e l i b r a r y and  o f AIDS Vancouver. I a l s o c o n s u l t e d  t h e Annual Report  of the Medical Health Officer of the Citv of Vancouver. 1983-1991. The c i t y stopped p u b l i s h i n g t h e "annual r e p o r t " a f t e r 1991. I a l s o consulted  t h e Annual Report o f t h e M i n i s t r y o f H e a l t h o f t h e  P r o v i n c e o f B r i t i s h Columbia f o r t h e y e a r s 1983 t o 1994. The documents a r e d i s t i n c t i v e contemporary forms o f s o c i a l organization structures  o f s t a t e , b u s i n e s s , and o t h e r a d m i n i s t e r e d  organizations discourse  which i n t e r s e c t w i t h t h e l a r g e l y h i e r a r c h i c a l  (Smith, 1990). They i n c l u d e  formal  scientific  as w e l l as t h e p u b l i c t e x t u a l d i s c o u r s e s  o f AIDS.  I e l u c i d a t e t h e s o c i a l r e l a t i o n s around t h e d i s c o u r s e o f AIDS by comparing t h e " u n o f f i c i a l " documents t o t h e " o f f i c i a l " documents. By doing so,  I reveal  conflicts,  s i m i l a r i t i e s , and phases i n t h e t e x t s . The  i n v e s t i g a t i o n o f t e x t u a l p r a c t i c e s makes v i s i b l e  many phases o f t h e o r g a n i z a t i o n a l  and d i s c u r s i v e p r o c e s s e s  t h a t a r e otherwise i n a c c e s s i b l e . I n p a r t i c u l a r , t h e f o r m a l ,  43  d e s i g n , planned, and o r g a n i z e d c h a r a c t e r  o f any o r g a n i z a t i o n  depends h e a v i l y on p r a c t i c e s , which c o o r d i n a t e ,  order,  p r o v i d e c o n t i n u i t y , monitor, and o r g a n i z e r e l a t i o n s between d i f f e r e n t segments and phases o f o r g a n i z a t i o n a l action  course o f  (Smith, 1990).  D i s c o u r s e a n a l y s i s p r o v i d e s a s t a n d p o i n t from which t h e r e s e a r c h e r ' s own conduct o r t h e conduct o f o t h e r s can be examined ( S c o t t , 1989; Smith, 1990). I t i s n o t o n l y an i n t e r n a l r e f l e c t i o n , but a shared p r a c t i c e o f r e f l e c t i o n on other d i s c u r s i v e standpoints. various  Gays and h e t e r o s e x u a l s and  groups may not share t h e same d i s c o u r s e  standpoints.  Only by comparing d i s c o u r s e s  o r common  o f s p e c i f i c groups  i s i t p o s s i b l e t o d i s c o v e r what they share and what they do not.  A c c o r d i n g t o Dorothy Smith, a f e m i n i s t s o c i o l o g i s t ,  discourses  a r e s o c i a l r e l a t i o n s which  are more than simply an expansion o f communication beyond t h e l o c a l . They r e o r g a n i z e r e l a t i o n s h i p s among l o c a l everyday worlds w i t h i n them and by r e l a t i n g them t o o t h e r s through common p a r t i c i p a t i o n i n t h e t e x t u a l l y mediated d i s c o u r s e . People s c a t t e r e d and unknown t o one another a r e c o o r d i n a t e d i n an o r i e n t a t i o n t o t h e same t e x t s . P u b l i c t e x t u a l d i s c o u r s e c r e a t e s new forms o f s o c i a l r e l a t i o n s . (Smith, 1990, p. 168) The  foregoing  discussion  i m p l i e s an approach t o  documents o r t e x t s which says t h a t they a r e s i t u a t e d i n s o c i a l r e l a t i o n s . I t thereby a v o i d s t r e a t i n g as g i v e n t h e v e r y p r a c t i c e s o f detachment c h a r a c t e r i s t i c o f t h e t e x t u a l mode. I t i n s i s t s a l s o on t h e m a t e r i a l i t y o f t h e t e x t as c o n s t i t u t i v e o f t h e s o c i a l courses o f a c t i o n i n which t h e t e x t becomes a c t i v e . Hermeneutie p r a c t i c e s - concepts,  44  c a t e g o r i e s , codes, methods o f i n t e r p r e t a t i o n , schemata, the l i k e - must be understood as a c t i v e c o n s t i t u e n t s s o c i a l r e l a t i o n s and  and  of  s o c i a l courses o f a c t i o n s r a t h e r than  merely as c o n s t i t u e n t s o r i n d i c e s o f AIDS. I n t e r p r e t a t i v e p r a c t i c e s which a c t i v a t e the t e x t are viewed as  properties  o f s o c i a l r e l a t i o n s . R e c o g n i z i n g the documents or t e x t  as  c o n s t i t u t i v e o f s o c i a l r e l a t i o n s a l s o means b e i n g  interested  i n the s o c i a l o r g a n i z a t i o n o f the t e x t p r o d u c t i o n  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 r a t h e r than simply a p a r t i c u l a r author ( C h r i s t i a n - S m i t h ,  1990;  the work o f  Smith,  1990;  Roman, 1995). Thus, I c o n t e x t u a l i z e d the documents as their location in a social  to  relation.  I t i s necessary t o emphasize the n o n - l i n e a r i t y and temporality contexts  o f the concept of s o c i a l r e l a t i o n . I a n a l y z e  the  o f the t e x t s or a c t s 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 o c c a s i o n ,  but as  constituents  o f a s e q u e n t i a l s o c i a l course of a c t i o n through which v a r i o u s s u b j e c t i v i t i e s are r e l a t e d . A g i v e n l o c a l l y  historic  instance  i s explored  as a c o n s t i t u e n t of a l a r g e r s o c i a l  process.  I t i s an a n a l y s i s which seeks t o d i s c l o s e the non-  l o c a l d e t e r m i n a t i o n s of l o c a l l y h i s t o r i c or orderliness  lived  (Smith, 1990). Such p o s s i b i l i t i e s as  multiple  simultaneous o c c u r r e n c e s of a t e x t , o r i t s repeated uses on a number of o c c a s i o n s  on which t e x t i s t r e a t e d as the same,  are t o be seen as o r g a n i z i n g 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 s e t t i n g s . The  r e p l i c a b l e or r e c u r r e n t  character,  the p a t t e r n i n g 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 t h e t e x t u a l and t h e l o c a l l y historic. The o t h e r c e n t r a l focus o f t h e i n v e s t i g a t i o n  into  t e x t u a l r e l a t i o n s and forms o f a c t i o n s must be t h e r e a d e r t e x t r e l a t i o n . The t e x t does not appear from nowhere (Foucault, 1977, 1983; Bove, 1994). The t e x t should be understood as h a v i n g been produced  to intend i n t e r p r e t a t i v e  p r a c t i c e s and usages o f t h e succeeding phases o f t h e r e l a t i o n . The t e x t - r e a d e r moment i s c o n t a i n e d 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 f o r t h i s study a r e those sources which have been developed as t h e l i t e r a t u r e on AIDS p r e v e n t i o n e d u c a t i o n i n Vancouver. Although much o f t h e l i t e r a t u r e on AIDS has been i n c l u d e d , t h r e e areas ( o r i g i n a l l y researched) have been omitted - t h e l i t e r a t u r e o f AIDS i n A f r i c a , AIDS and women, and t h e impact o f t h e gay p r e s s and p o p u l a r s o c i e t y . T h i s a c t o f o m i s s i o n does not demean t h e s i g n i f i c a n c e o f these i s s u e s i n understanding AIDS; they a r e p a r t o f t h e phenomenon o f AIDS and AIDS p r e v e n t i o n e d u c a t i o n . Rather, these t e x t s do not d i r e c t l y r e v e a l how AIDS p r e v e n t i o n e d u c a t i o n programs have been c o n s t r u c t e d , d e l i v e r e d , and implemented w i t h gay men by gay men. O b v i o u s l y , t h e omissions may d e a l w i t h AIDS p r e v e n t i o n e d u c a t i o n , but they deserve f u l l e r treatment than my study alone can g i v e . The a n a l y t i c a l a b i l i t y t o i n v e s t i g a t e t h e t e x t depends upon t h e competence o f t h e p r a c t i t i o n e r o f those  relations.  46  Thus the a n a l y s t does not have t o pretend t o withdraw as member o f s o c i e t y i n performing a n a l y t i c work (Smith, Roman, 1996). On  the c o n t r a r y ,  a  1990;  such a n a l y s i s depends  p r e c i s e l y upon such membership; i f the a n a l y s t does not already  command the  i n t e r p r e t i v e method o f the r e l a t i o n a l  process being investigated, 1990;  i t has  Roman, 1995). As a person who  numerous PWAs, I am representation  aware of the  of i d e n t i t y and  persons w i t h AIDS and f o r some. My  HIV.  has  issues  (Smith,  been a "buddy" t o surrounding  d i f f e r e n c e , s a f e r sex,  T h i s c o u l d r a i s e e t h i c a l concerns  aware t h a t d i s c o u r s e  i t s e l f i s an event t h a t  i t s position within  s o c i a l space, i n c l u d i n g the speaker, l o c a t i o n , and My  a n a l y s i s i s mediated by the  q u e s t i o n s . What i s b e i n g s a i d ? To whom and b e i n g s a i d ? How  a given hearers  following  f o r whom i s i t  i s i t b e i n g s a i d ? These w i l l determine  the t e x t i s c o n s t r u c t e d  and  address s u b j e c t i v i t y concerns  i n v o l v e s not o n l y the t e x t , but  of d i s c o u r s e .  and  l o c a t i o n as an Eurocanadian male h i s t o r i a n  researcher w i l l hopefully because I am  t o be l e a r n e d  and  read. Furthermore,  how  my  i n t e r p r e t a t i o n i s compared t o o t h e r analyzes f o r v a l i d i t y and  reliability. I n s i s t i n g on the m a t e r i a l i t y of the t e x t and  actual s o c i a l l y organized a c t i v i t i e s ,  on  the  including writing  and  r e a d i n g , a r t i c u l a t i n g t e x t s w i t h s o c i a l r e l a t i o n s , as fundamental t o a m a t e r i a l i s t i n v e s t i g a t i o n o f knowledge culture  (Smith, 1990;  Roman, 1996). The  and  study of AIDS  p r e v e n t i o n e d u c a t i o n 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, develop  i t s own  i s not a d i s t i n c t f i e l d . Nor does i t t h e o r i e s and methods o f r e s e a r c h .  Rather,  t h i s study e x p l o r e s the a c t u a l ways i n which s o c i a l r e l a t i o n s about AIDS p r e v e n t i o n e d u c a t i o n are o r g a n i z e d how  they  and  operate.  Summary The purpose o f t h i s chapter was  t o develop  a  methodology f o r the subsequent a n a l y s i s of AIDS p r e v e n t i o n e d u c a t i o n programs i n Vancouver between 1983 D i s c o u r s e or t e x t i s a powerful way  and  i n today's  1994.  society to  form and shape us as s u b j e c t s . D i s c o u r s e s and t h e i r  related  d i s c i p l i n e s are a l s o f u n c t i o n s of power which must not seen as n e g a t i v e , r e p r e s s i v e , or dominating, be. Rather,  be  though they  can  power i n f l u e n c e s v a r i o u s domains and  i n s t i t u t i o n s which, i n t u r n , make us i n t o the i n d i v i d u a l s  we  are today. B r i n g i n g i n t o q u e s t i o n power r e l a t i o n s i s a c e n t r a l f e a t u r e o f d i s c o u r s e a n a l y s i s which aims t o show adjacency  o f events i n v a r i o u s f i e l d s can t r a n s f o r m  how  entire  domains o f knowledge p r o d u c t i o n . A h i s t o r y seeks t o reproduce  and  i n t e r p r e t c o n c r e t e events as they  actually  o c c u r r e d i n time. H i s t o r i a n s c r e a t e d e s c r i p t i o n of the p a s t t o e s t a b l i s h and c h a l l e n g e as w e l l as p r o t e c t and  contest  hegemonic d e f i n i t i o n s of h i s t o r y . H i s t o r i a n s adhere t o t h r e e b a s i c p r i n c i p l e s . The p r i n c i p l e holds that s o c i a l  first  constructionists'interpretations  of the h i s t o r y o f d i s e a s e and medical p r a c t i c e deny t h a t  48  knowledge i n the b i o l o g i c a l s c i e n c e s can be i t s s o c i a l context. h i s t o r i c i s m . The  independent of  Second, h i s t o r i a n s are s k e p t i c a l o f  t h i r d p r i n c i p l e i s wariness about  p r e s e n t i s m which d i s t o r t s the p a s t from our own  contemporary  viewpoint. H i s t o r i a n s are faced w i t h s e v e r a l m e t h o d o l o g i c a l problems. O f t e n h i s t o r i e s tend t o be n a r r a t i v e s t h a t l o o s e l y formulated n a r r a t i v e , and conclusions  and  themes, d e f i n i t i o n s of  the d e f i n i n g s t r u c t u r e s of the s t o r i e s and  are d e f i n e d p o e t i c a l l y and  bound. R e p r e s e n t a t i o n The  i n t u i t i v e . The  are  are q u i t e  i s a l s o as p r o b l e m a t i c  a n a l y s i s o f t e n takes the p e r s p e c t i v e Poststrueturalism holds that  context  as n a r r a t i v e .  o f the  teller.  structuralist  i n t e r p r e t a t i o n s are d e t e r m i n i s t i c , f o r e c l o s i n g the p o s s i b i l i t i e s f o r meaning t h a t d i f f e r e n t l y h i s t o r i c a l s u b j e c t s may  multiple  located  make. Thus, p o s t s t r u c t u r a l modes of  d i s c o u r s e a n a l y s i s aims t o both d e s c r i b e and  explain  not  o n l y the i n s t i t u t i o n s , but the power l i n k a g e s among people and  those i n s t i t u t i o n s . The  t e x t s u t i l i z e d i n t h i s study  must be understood as a c t i v e c o n s t i t u e n t s of r e l a t i o n s and  social  s o c i a l courses of a c t i o n s r a t h e r as i n d i c e s o f  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 t e x t s , study r e v e a l s how  the a c t u a l ways i n which s o c i a l r e l a t i o n s  about AIDS p r e v e n t i o n  education  are organized  and how  operate. By doing so, the study a l s o r e v e a l s how prevention  education  implemented.  the  i s constructed,  delivered,  AIDS and  they  49 CHAPTER FOUR: A HISTORY OF AIDS PREVENTION EDUCATION IN VANCOUVER. 1983-1994 In t h i s chapter, AIDS Vancouver's p r e v e n t i o n programs between 1983 i n t h i s chapter  and  include  1994  education  are d i s c u s s e d . M a t e r i a l s used  p e r s o n a l j o u r n a l s , AIDS Vancouver's  n e w s l e t t e r s , minutes from meetings, annual r e p o r t s ,  and  p o l i c y documents. I c o n t e x t u a l i z e d AIDS p r e v e n t i o n  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 p r o v i n c e . Adhering t o concepts i n the p r e v i o u s chapter,  I r e v e a l t h a t gay  men  have, f o r the most p a r t , c o n s t r u c t e d , d e l i v e r e d , and implemented the AIDS p r e v e n t i o n education programs i n Vancouver between 1983  and  1994.  Furthermore, the h i s t o r y o f  AIDS i n Vancouver does not c o i n c i d e with e x i s t i n g  histories  o f AIDS as suggested elsewhere by Mann (1992a) and  Rayside  and L i n g u i s t (1992). The y e a r s from 1983 seen as a new  were a time when AIDS  was  and p o t e n t i a l l y epidemic d i s e a s e , when AIDS  p r e v e n t i o n e d u c a t i o n was saw  t o 1986  an open p o l i c y area. T h i s p e r i o d  the outbreak o f the d i s e a s e i n the gay community,  the  development o f p u b l i c alarm and s o c i a l s t i g m a t i z a t i o n , and the l a c k o f s c i e n t i f i c c e r t a i n t y about the d i s e a s e . On p o l i c y s i d e , t h e r e 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 a c t i o n by  v a r i o u s l e v e l s o f government, but behind c o n s i d e r a b l e openness t o new establishment  o f new  the scenes  p o l i c y a c t o r s and  the  p o l i c y community around AIDS. T h i s  a p e r i o d o f development from below. I t was 1987  the  was  succeeded i n  by a stage o f emergency i n which p r o v i n c i a l and  civic  s e r v a n t s and p o l i t i c i a n s i n t e r v e n e d . A h i g h - l e v e l p o l i t i c a l  response emerged. From 1992 on, these two phases have been f o l l o w e d by a t h i r d , t h e c u r r e n t p e r i o d o f slow n o r m a l i z a t i o n o f t h e d i s e a s e , i n which t h e r a t e o f growth o f t h e epidemic has slowed and p u b l i c i n t e r e s t and p a n i c markedly decreased. O f f i c i a l i n s t i t u t i o n s have been e s t a b l i s h e d and formal procedures adopted and reviewed; p a i d p r o f e s s i o n a l s have r e p l a c e d t h e e a r l i e r v o l u n t e e r s . The h i g h l e v e l p o l i t i c a l response has gone; t h e problem now i s t o maintain The  t h e s a l i e n c e o f AIDS on t h e p o l i c y agenda.  F i r s t E r a : New Beginnings.  1983-1987  B r i t i s h Columbia was governed by t h e c o n s e r v a t i v e S o c i a l C r e d i t p a r t y from t h e mid-1980s t o 1992. The government was l e d by men who were determined t o d i s t a n c e themselves as much as p o s s i b l e from i n i t i a t i v e s t h a t c o u l d be construed (Rayside  as s u p p o r t i n g a gay l i f e - s t y l e o r sex e d u c a t i o n  & L i n g u i s t , 1992). Before p u b l i c o f f i c i a l s and  h e a l t h departments r e a l i z e d t h e r e was a "problem," a group of gay men i n Vancouver r e c o g n i z e d t h a t f r i e n d s and l o v e r s were d y i n g and i f something was going t o be done t o change the s i t u a t i o n , i t would have t o be l e d by "gay a c t i v i s t s . " Mass media i n Vancouver had r e p o r t e d t h a t gay men i n San F r a n c i s c o , Los Angeles, and New York were d y i n g from a strange  illness  (Rayside  & L i n g u i s t , 1992).  Vancouver's gay community were beginning  Many people i n  t o p a n i c because  the new d i s e a s e was p e r c e i v e d and t a l k e d about as a plague. In t h e s p r i n g o f 1983, some gay some medical  men w i t h t h e support o f  p r a c t i t i o n e r s c r e a t e d t h e country's  first  51 community-based AIDS s e r v i c e and e d u c a t i o n o r g a n i z a t i o n , AIDS V a n c o u v e r . 1  The agency's e d u c a t i o n department was s t a r t e d i n t h e same y e a r . A couple o f people were r e s p o n s i b l e f o r o r g a n i z i n g and t r a i n i n g t h e v o l u n t e e r s needed t o s t a f f a h o t l i n e which p r o v i d e d gay men w i t h i n f o r m a t i o n about t h e new medical  c r i s i s . A t t h e time, AIDS Vancouver's h o t l i n e was  the o n l y l o c a l source o f up-to date i n f o r m a t i o n about AIDS. Most o f t h e i n f o r m a t i o n found  i n the h o t l i n e volunteers'  manua1, A l l S e x u a l l y A c t i v e Men Should  Know These F a c t s !  which was adapted from t h e New York N a t i v e , concerned symptoms a s s o c i a t e d w i t h t h e d i s e a s e such as s w o l l e n  glands,  p i n k t o p u r p l e f l a t o r r a i s e d b l o t c h e s o r bumps, weight l o s s , f e v e r , n i g h t sweats, cough, and d i a r r h e a (AIDS Vancouver, 1983). The h o t l i n e  operated  out o f t h e Gay and  L e s b i a n Centre on Bute S t r e e t i n t h e h e a r t o f t h e West End, a neighbourhood w i t h a h i g h e r c o n c e n t r a t i o n o f gays and l e s b i a n s than o t h e r l o c a l e s i n t h e Lower Mainland. The l o c a t i o n a l s o enabled t h e v o l u n t e e r s t o conduct i n f o r m a t i o n s e s s i o n s w i t h people who were dropping I t i s important establishment little  i n t o t h e Centre.  t o emphasize t h a t a t t h e time o f t h e  o f t h e hotline,, these men were working w i t h  s c i e n t i f i c " i n f o r m a t i o n about t h e d i s e a s e . In f a c t ,  they d i d not know p r e c i s e l y how t h e v i r u s was t r a n s m i t t e d , nor d i d they have a c l e a r sense o f how t o d e f i n e which s e x u a l a c t i v i t i e s were s a f e r and which were n o t . P e r s o n a l 1. I n a d d i t i o n t o AIDS p r e v e n t i o n education, AIDS Vancouver i s i n v o l v e d i n advocacy i s s u e s . The o r g a n i z a t i o n o f f e r s support s e r v i c e s f o r PWAs and s o l i c i t s funding f o r r e s e a r c h and o p e r a t i o n a l expenses.  52  j o u r n a l s r e v e a l t h a t t h e r e was w i t h i n the gay community gay man  s p e c u l a t i o n about the d i s e a s e  (PT, 1983;  JM,  1983). " P e t e r , " a  and an AIDS educator i n Vancouver,  stated i n h i s  journal: I am concerned t h a t some people i n the gay community are u n n e c e s s a r i l y s t e r e o t y p i n g leathermen. Even though i t i s t r u e t h a t the l e a t h e r community i s d i s p o r t i o n a t e l y f a l l i n g i l l , t h e r e i s no evidence s u g g e s t i n g t h a t l e a t h e r a c t i v i t i e s are c o n t r i b u t i n g t o AIDS. (PT, 1983) John, a l s o a gay educator i n AIDS Vancouver wrote i n h i s j ournal: I am f r u s t r a t e d today, j u s t so many " t h e o r i e s " about why and who g e t s t h i s d i s e a s e . E s p e c i a l l y comments about so and so's t r i c k i n g h a b i t s . The bottom l i n e no one p e r s o n knows. I f I hear another judgmental statement about a person's s e x u a l behaviour, I t h i n k I am going t o scream. (JM, 1983) Some men the o n l y way  b e l i e v e d t h a t complete  sexual a b s t i n e n c e  t o a v o i d i n f e c t i o n ; o t h e r s debated  was  relative  r i s k o f v a r i o u s s e x u a l behaviours. Many people i n the  gay  community were making educated guesses on the b a s i s o f l i t t l e data about the course of the epidemic. T h i s suggests t h a t plague-making and d e n i a l were s i m u l t a n e o u s l y o c c u r r i n g w i t h i n the community. The f i r s t n e w s l e t t e r , t i t l e d , AIDS Vancouver: F i g h t i n g Fear and Confusion, r e v e a l s t h a t the educators a t AIDS Vancouver were p r o f o u n d l y concerned  that  the l a c k o f knowledge about the d i s e a s e would f u r t h e r endanger an a l r e a d y panicked community: T h e r e f o r e : u n t i l we know b e t t e r , i t makes sense t h a t the fewer d i f f e r e n t people you come i n s e x u a l c o n t a c t w i t h the l e s s chance t h i s p o s s i b l y c o n t a g i o u s bug has t o t r a v e l around. Have as much sex as you want, but w i t h fewer people and w i t h h e a l t h y people, I f don't know whether your p a r t n e r i s h e a l t h y - ask him d i r e c t l y t o be honest  w i t h you about h i s h e a l t h . (AIDS Vancouver, S p r i n g , 1983) T h i s statement  i s p r o b l e m a t i c because of i n t i m a c y  i s s u e s surrounding s e x u a l behaviour and the n o t i o n o f c o n t a g i o n embedded i n the word "bug." The media r e i n f o r c i n g the n o t i o n o f gay plague  was  (Rayside & L i n g u i s t ,  1992). The p e r s o n a l j o u r n a l s a l s o a t t e s t t o t h i s  concern.  E q u a l l y p r o b l e m a t i c were the developments i n the U n i t e d S t a t e s , namely the c a l l  f o r quarantine l e g i s l a t i o n and  r e f u s a l by some p h y s i c i a n s t o t r e a t d y i n g gay men. developments were g i v e n a t t e n t i o n here i n B r i t i s h Given t h e concerns  the  These Columbia.  f a c i n g Vancouver's gay community, AIDS  Vancouver i n i t s f i r s t n e w s l e t t e r announced i t would be h o l d i n g i t s f i r s t p u b l i c forum i n March o f 1983 sponsored  which  by the Zodiacs, a gay l e a t h e r f r a t e r n i t y  was  (AIDS  Vancouver, 1983). In t h e f a l l of 1983,  AIDS Vancouver p u b l i s h e d i t s  second n e w s l e t t e r , t i t l e d Who n e w s l e t t e r was  We Are and What T h i s I s . T h i s  d i s t r i b u t e d i n v a r i o u s gay bars and  other  b u s i n e s s e s . A major c h a l l e n g e f a c i n g the o r g a n i z a t i o n i s r e v e a l e d i n the f o l l o w i n g n e w s l e t t e r e x c e r p t : As a group o f v o l u n t e e r s i n a n o n - p r o f i t s o c i e t y , 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 v i c t i m s of any c o n s p i r a c y , and the medical e s t a b l i s h m e n t and media are h a r d l y i g n o r i n g us. E v e r y t h i n g t h a t can be done i s , on the whole, b e i n g done. I t i s up t o us however, t o inform o u r s e l v e s and t o defend our s e x u a l freedoms. What you choose t o do about t h i s problem i s your d e c i s i o n . We can h e l p each o t h e r , e s p e c i a l l y those o f us who may be i l l o r may become i l l . (AIDS Vancouver, F a l l , 1983) There i s no mention o f AIDS i n the annual r e p o r t s o f the M i n i s t r y o f H e a l t h f o r the p r o v i n c e o f B r i t i s h Columbia  and  54 the c i t y o f Vancouver d u r i n g 1983. was  T h i s r e v e a l s t h a t AIDS  not y e t p e r c e i v e d by the governments as a h e a l t h i s s u e  f a c i n g the g e n e r a l p o p u l a t i o n . However, the p u b l i c informed  was  o f AIDS by the media.  During  1984,  AIDS Vancouver p u b l i s h e d a  t i t l e d When a F r i e n d Has AIDS which was  newsletter  funded by the  City  of Vancouver and the H e a l t h Promotion D i r e c t o r a t e , Western Region, H e a l t h and Welfare Canada. The  n e w s l e t t e r was  on m a t e r i a l s a v a i l a b l e from the Gay Men's H e a l t h which was  and  still  i s New  based  Crisis  York C i t y ' s AIDS o r g a n i z a t i o n .  Some o f the statements i n the n e w s l e t t e r address the a l i e n a t i o n which PWAs were e x p e r i e n c i n g : simple  squeeze o f the hand or a hug  you s t i l l  c a r e . You  t o u c h i n g " and  "touch him,  can l e t him know t h a t  can not c o n t r a c t AIDS by  simply  "Don't a l l o w him t o become i s o l a t e d "  Vancouver, 1984). More i m p o r t a n t l y ,  A  (AIDS  i t i s s t a t e d i n the  document t h a t "AIDS i s everyone's c h a l l e n g e "  (AIDS  Vancouver, 1984). In 1984,  AIDS Vancouver renamed and r e v i s e d i t s h o t l i n e  manual. The manual became known as What are the Symptoms of Immune D e f i c i e n c y . The as w e l l as  i n f o r m a t i o n became much more d e t a i l e d  clinical:  There are no c e r t a i n treatments a t the p r e s e n t time....Among the experimental agents and techniques, i n t e r f e r o n , immunomodulators such i n t e r l e u k e n - 2 , and plasmapheresis have a t t r a c t e d the most a t t e n t i o n . I n t e r f e r o n , which e x i s t s i n many forms, i s known t o have a n t i v i r a l p r o p e r t i e s and has shown promise i n the treatment o f some forms of cancer. (AIDS Vancouver, 1984) D i a g n o s t i c t e s t i n g was  a l s o addressed i n the manual:  55 A t t h e p r e s e n t time, t h e r e a r e s e v e r a l r o u t i n e , i n e x p e n s i v e l a b o r a t o r y t e s t s t h a t may e i t h e r strengthen o r help t o r u l e out a diagnosis o f immune d e f i c i e n c y . These i n c l u d e white b l o o d c e l l and lymphocyte counts, both o f which a r e o f t e n low i n v i c t i m s o f immune d e f i c i e n c y and s k i n t e s t i n g w i t h r e c a l l antigens....when immune d e f i c i e n c y i s s t r o n g l y suspected, t h e d i a g n o s i s may be confirmed by s e v e r a l l a b t e s t s t h a t a r e n o t r o u t i n e l y a v a i l a b l e . (AIDS Vancouver, 1984) A t y p e - w r i t t e n document, t i t l e d A R i s k Reduction For AIDS, r e v e a l s t h a t as soon as i t was r e a s o n a b l y  Guide  clear  t h a t HIV was t r a n s m i t t e d s e x u a l l y , AIDS Vancouver's e d u c a t i o n s t a f f and v o l u n t e e r s borrowed s a f e r sex g u i d e l i n e s and i n s t r u c t i o n a l forums developed  i n the United  S t a t e s i n o r d e r t o g e t t h e word out t o gay men i n Vancouver (AIDS Vancouver, S p r i n g , 1985)i  The g u i d e l i n e s c e n t e r e d  around h i g h r i s k , moderate r i s k , and low r i s k  activities.  The document, A R i s k Reduction Guide f o r AIDS a l s o d e f i n e d what h e a l t h i s : H e a l t h means much more than t h e absence and avoidance o f d i s e a s e . I t i s t h e human c o n d i t i o n i n which t h e p h y s i c a l , mental and s p i r i t u a l needs o f a person a r e i n balance. H e a l t h f u l sexual behaviour i s an e x p r e s s i o n o f one's n a t u r a l sex d r i v e s i n s a t i s f y i n g , d i s e a s e - f r e e ways. Guarding your h e a l t h and r e s p e c t i n g t h e h e a l t h o f your s e x u a l p a r t n e r s means,, f o r one t h i n g , b e i n g aware of your body and the messages i t may be g i v i n g t o you. (AIDS Vancouver, S p r i n g , 1985) Members o f a c u l t u r a l community may d i s c u s s sex and h e a l t h i s s u e s w i t h each o t h e r o r may r e l y on people o u t s i d e t h e group f o r i n f o r m a t i o n . I t i s a r u l e o f thumb i n h e a l t h e d u c a t i o n , f o r example., t h a t  women tend t o g e t h e a l t h  i n f o r m a t i o n from one another, w h i l e h e t e r o s e x u a l men t e n d t o get i n f o r m a t i o n from the women i n t h e i r l i v e s  ( F a u c i , 1991;  Mann, 1992b). I d e n t i f y i n g t h e key sources o f i n f o r m a t i o n , whether they a r e community groups, magazines, and  56 newspapers, o r members o f the same c u l t u r a l group i s e s s e n t i a l so t h a t the e d u c a t i o n a l e f f o r t can meet people i n the p l a c e s where they expect i n f o r m a t i o n exchange t o take p l a c e . AIDS Vancouver was  t r y i n g t o use " h e t e r o s e x u a l " norms  t o educate the gay community. From 1984  t o 1987,  hundreds o f men  i n Vancouver  attended r i s k - r e d u c t i o n programs i n b a r s , l e c t u r e s h a l l s , c l u b s , l i b r a r i e s , and community c e n t r e s . They l e a r n e d about the programs from f r i e n d s and neighbours, from f l i e r s handed out i n gay b a r s , bathhouses,  and o t h e r c l u b s , from  gay  n e w s l e t t e r s and advertisements i n l o c a l newspapers. Dedicated v o l u n t e e r s prepared the a d v e r t i s i n g , the workshops, and shared every p i e c e  facilitated  o f i n f o r m a t i o n they  c o u l d g l e a n from medical j o u r n a l s and the community g r a p e v i n e . Funding was  s u p p l i e d by donations from  friends  and v o l u n t e e r s , from b e n e f i t p a r t i e s , and from d o n a t i o n cans t h a t s a t next t o cash r e g i s t e r s i n b a r s , r e s t a u r a n t s , and other businesses. Even though the e f f o r t s o f AIDS Vancouver were b e i n g supported by the gay community, g r e a t concern was  expressed  t h a t some people i n the gay community d i d not support the e f f o r t s o f AIDS Vancouver. meeting s t a t e d t h a t "we  One board member d u r i n g a board  need t o h e l p lobby f o r support f o r  AIDS s e r v i c e s w i t h i n the community as w e l l as the C i t y Council f o r assistance" Many men  (AIDS Vancouver,  January,  1985).  i n the gay community were denying the p o s s i b i l i t y  t h a t they might be i n f e c t e d w i t h the v i r u s and wanted t o d i s s o c i a t e themselves  from both the o r g a n i z a t i o n and the  57 disease.  Moreover, many men  i n the gay  AIDS Vancouver as a s i t e of r a d i c a l gay  community  p o l i t i c s and  no a s s o c i a t i o n w i t h such an o r g a n i z a t i o n . themselves as members o f s o c i e t y and  perceived  They  not the  wanted  perceived  "gay"  community. In 1985,  as the number o f AIDS cases rose  dramatically,  S t . P a u l ' s H o s p i t a l , a h o s p i t a l l o c a t e d c l o s e t o the West End which has  a l a r g e gay  population,  the i n s t i t u t i o n a "Center f o r E x c e l l e n c e " o f AIDS.  The  city's  d e c i d e d t o make i n the  treatment  h o s p i t a l formed an i n t e r d i s c i p l i n a r y team o f  about t h i r t y g e n e r a l s o c i a l workers. The  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  i n p a t i e n t s e r v i c e s o f the h o s p i t a l and  provincially-funded outpatient  c l i n i c eventually  i t s e l f t r e a t i n g 90 p e r c e n t of the p r o v i n c e ' s o f f e r i n g more i n t e g r a t e d and  a  found  AIDS cases,  coherent h o s p i t a l c a r e than  a v a i l a b l e anywhere i n Canada (Rayside & L i n g u i s t ,  was  1992;  Brown, 1995). During the same year, B r i t i s h Columbia became the province  t o o f f e r f r e e t e s t i n g and  the p r o v i n c e ,  and  c o u n s e l l i n g throughout  although d o c t o r s o r c l i n i c nurses were t o  keep t r a c k of the names o f p a t i e n t s b e i n g t e s t e d f o r t h e r e was  first  HIV,  no requirement f o r f u r t h e r r e g i s t e r i n g o f names.  A s p e c i a l AIDS t e s t i n g and  counselling c l i n i c  was  e s t a b l i s h e d by the h e a l t h m i n i s t r y i n Vancouver. There p a t i e n t s c o u l d e a s i l y supply pseudonyms t o d o c t o r s o r c l i n i c s , and  so c o u l d have de f a c t o anonymous t e s t s  & Lindquist,  1992). Minutes from a board meeting  t h a t t h i s system was  (Rayside  reveals  i n s t a l l e d a f t e r AIDS Vancouver  58 r e p r e s e n t a t i v e s convinced, p u b l i c h e a l t h o f f i c i a l s t h a t no one would show up f o r t e s t i n g a t 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 t h e  d i s c u s s i o n s between t h e government and AIDS Vancouver was the d i s t r u s t o f t h e government. Many gay men p e r c e i v e d t h a t by undergoing t e s t i n g , they would v o l u n t a r i l y be p l a c i n g themselves on a "quarantine"  list.  The f i r s t group i n Canada t o o r g a n i z e people l i v i n g w i t h AIDS was Vancouver's Persons With AIDS C o a l i t i o n , formed i n e a r l y 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 s e c u r i n g funding f o r new drugs and human r i g h t s p r o t e c t i o n f o r PWAs. The new organization  grew q u i c k l y 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 f o r c e d t h e f e d e r a l H e a l t h and W e l f a r e Department t o r e l e a s e AZT, an AIDS drug, by t h r e a t e n i n g t o smuggle s u p p l i e s o f t h e drug from t h e U n i t e d S t a t e s  (Rayside  & Linguist., 1992). In June o f 1986, AIDS Vancouver r e l o c a t e d t o a new s i t e , west o f B u r r a r d S t r e e t on Davie S t r e e t . In t h e same month, t h e o r g a n i z a t i o n announced i n a n e w s l e t t e r , t h e AIDS Vancouver H e a l t h Promotion P r o j e c t t i t l e d An I n t r o d u c t i o n t o AIDS Vancouver: The "AIDS/ARC: P u b l i c Awareness and Support" p r o j e c t i s funded by the f e d e r a l and c i t y governments f o r two y e a r s from J u l y 1985 t o J u l y 1987. The $250,000 grant p r o v i d e s f o r t h r e e s t a f f members, an o f f i c e , and s p e c i f i c p r o j e c t s i n t h e areas o f i n f o r m a t i o n and e d u c a t i o n , support s e r v i c e s , and networking. Two o t h e r s t a f f members have been h i r e d under f e d e r a l employment a s s i s t a n c e programs. (AIDS Vancouver, June 1986)  59 The Annual Report  o f the M e d i c a l H e a l t h O f f i c e r o f t h e c i t y  o f Vancouver (1986) makes no mention o f t h e funding f o r AIDS Vancouver. I t i s p o s s i b l e t h a t t h e governments had hoped AIDS c o u l d be c o n t a i n e d by t h e gay community. The same r e p o r t addressed  AIDS:  In 1986, the world woke up t o f a c t t h a t AIDS was not j u s t a gay d i s e a s e , b u t c o u l d a l s o i n f e c t t h e h e t e r o s e x u a l community. D e s p i t e numerous media s t o r i e s on AIDS, no c o o r d i n a t e d AIDS e d u c a t i o n program was undertaken by the v a r i o u s l e v e l s o f Canadian Governments, ( p . l ) The r e p o r t c o n t i n u e d : As a n t i c i p a t e d , AIDS continued i t s r a p i d r i s e w i t h 102 cases diagnosed d u r i n g t h e y e a r (Up from 8 cases i n 1983 and double from 1985). With t h e absence of e f f e c t i v e o r t h e r a p e u t i c measures, e d u c a t i o n remains t h e s o l e a c t i v i t y a v a i l a b l e t o c o n t r o l t h e spread o f t h i s v i r a l i n f e c t i o n . There i s a need f o r major education e f f o r t s t o be d i r e c t e d towards persons a t p o t e n t i a l r i s k such as teenagers, p r o s t i t u t e s and drug a d d i c t s , (p. 14) The C i t y o f Vancouver made p l a n s f o r the c r e a t i o n o f a s m a l l p r o j e c t group t o develop AIDS e d u c a t i o n packages, n u r s i n g assessment t o o l s and treatment  g u i d e l i n e s , and  e d u c a t i o n m a t e r i a l f o r c a r e g i v e r s t o AIDS v i c t i m s . The c i t y a l s o r e c e i v e d funding from the M i n i s t r y o f H e a l t h t o o f f s e t the c o s t o f p r o v i d i n g Home Care s e r v i c e s p r i m a r i l y t o AIDS p a t i e n t s i n the West End. Approximately  30 p a t i e n t s were  c l i e n t s o f t h e Home Care Program. H e a l t h o f f i c i a l s a l s o encouraged the Vancouver School Board t o develop AIDS programs f o r grade 12 students had n o t developed  (p.5). The government  still  a c u r r i c u l u m f o r students i n t h e  province. In t h i s e a r l y phase (1983-1986), t h e n o v e l t y and shock of a l i f e - t h r e a t e n i n g i n f e c t i o u s disease o f p o t e n t i a l l y  60 epidemic p r o p o r t i o n s a search  i n t h e l a t e 20th century  f o r explanatory  rapidly led to  models w i t h some degree o f  p r e d i c t i v e power. There were no e s t a b l i s h e d departmental, l o c a l , o r h e a l t h a u t h o r i t y mechanisms i n which AIDS p o l i c y c o u l d be encompassed. There were no e s t a b l i s h e d  expert  a d v i s o r y mechanisms t h a t c o u l d d e a l w i t h AIDS; i n f a c t , t h e r e were no e x p e r t s .  There was no p r e e x i s t i n g p o l i c y  community around AIDS. T h i s p e r i o d i l l u s t r a t e s c l e a r l y how a community developed around t h e d i s e a s e , 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 formal  coalesced  and consorted,  and how  l i n k s between t h e v a r i o u s government h e a l t h  departments and AIDS Vancouver were n o t i c e a b l y absent. The  Second E r a : L o c a l I n i t i a t i v e s .  1987-1992  Most c u r r e n t i n t e r p r e t a t i o n s o f p o l i c y r e a c t i o n s t o t h e epidemic have focused process,  on AIDS policymaking as a top-down  whereby government r e a c t e d  in traditionally  consensual ways, sending s i g n a l s about a p p r o p r i a t e i n t o t h e p u b l i c domain.  reactions  But, i n t h e e a r l i e r p e r i o d o f  r e a c t i o n , p o l i c y was formed i n a r a t h e r d i f f e r e n t way, i n a bottom-up r a t h e r than a top-down way, w i t h a v o l u n t e e r r a t h e r than an o f f i c i a l  ethos.  Between 1987-1992, gay men continued  t o be p a r t o f t h e  emergent p u b l i c p o l i c y lobby around AIDS. Another p a r t o f t h a t p o l i c y lobby was a l s o forming about t h e same time. C l i n i c a l and s c i e n t i f i c e x p e r t i s e on AIDS was a l s o i n t h e p r o c e s s o f being e s t a b l i s h e d and i n s t i t u t i o n a l i z e d . The question disease  o f p o t e n t i a l and a c t u a l h e t e r o s e x u a l or threat t o the population  spread o f t h e  at l a r g e was t h e i s s u e  61 t h a t u n i t e d t h e AIDS p o l i c y community. As w e l l as e x t e r n a l l i n k s , t h e M i n i s t r y o f H e a l t h and t h e H e a l t h Department o f the c i t y o f Vancouver developed i t s own i n t e r n a l  policy  machinery on AIDS. The p o l i c y l i n e s t h a t most c l e a r l y u n i t e d the community were a s t r e s s on t h e need f o r urgent  action  and t h e need f o r p u b l i c education t o s t r e s s t h e h e t e r o s e x u a l nature o f t h e d i s e a s e r a t h e r than t h e "gay plague" angle o f the p o p u l a r  press.  An e x t e r n a l p o l i c y review was commissioned by AIDS Vancouver t o h e l p i d e n t i f y what kinds o f s e r v i c e s and e d u c a t i o n a l programs were needed because o f t h e s i g n i f i c a n t i n c r e a s e i n t h e number o f PWAs. The review t i t l e d o f Support S e r v i c e s  (1987) by Judy K r u e e k l ,  Evaluation  a U.B.C.  p r o f e s s o r o f s o c i a l work, suggests t h a t "common sense and a commitment t o community empowerment l e d AIDS Vancouver t o adopt a h e a l t h education  s t r a t e g y t h a t was a t once  p r a c t i c a l , c l o s e l y focused,  and rooted i n community v a l u e s ,  o r g a n i z a t i o n , and p o l i t i c s "  (p.13). As e d u c a t i o n a l programs  were b e i n g assessed  and developed:  Gay men shared t h e i r p e r c e p t i o n s o f what they f e l t i s needed f o r themselves and other gay men i n Vancouver - responses grounded i n t h e i r experience o f t h e community as i t copes w i t h a major h e a l t h c r i s i s over time. (Krueekl, 1987, p. 13) The  same p o l i c y review document r e v e a l e d t h a t  AIDS  Vancouver's c l i e n t s were s a t i s f i e d w i t h t h e o r g a n i z a t i o n ' s e d u c a t i o n a l programs which disseminated  i n f o r m a t i o n about  AIDS through t h e h o t l i n e , speakers bureau, a l i b r a r y , forums, and i n f o r m a t i o n pamphlets. However, t h e document also revealed that:  no s i g n i f i c a n t gaps i n s e r v i c e s were i d e n t i f i e d . The reason f o r t h i s c o u l d w e l l be t h a t t h e t a r g e t p o p u l a t i o n r e c e i v i n g the s e r v i c e s many be a f r a i d to c r i t i c i z e t h e o n l y e x i s t i n g comprehensive program f o r persons w i t h AIDS i n Vancouver. ( K r u e c k l , 1987, p. 16) The document does n o t r e v e a l t h a t many PWAs were l i v i n g below the p o v e r t y l i n e and most were r e l y i n g on t h e s o c i a l support o f f r i e n d s . own  PWAs were a l s o b e i n g r e j e c t e d by t h e i r  families. The p e r s o n a l j o u r n a l s suggest t h a t some members o f t h e  gay community i n s i s t e d upon " s a f e r sex" r a t h e r than celibacy  (PT, 1987;  JM, 1987). Peter, an AIDS educator,  stated i n h i s journal: There appears t o be a s m a l l group o f s e r o n e g a t i v e s who c o n t i n u e t o p r a c t i c e v e r y h i g h r i s k activities. Most o f t h e f e l l o w s 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, t h e y ' r e a l l t a l k i n g s a f e sex, t h e y ' r e t a l k i n g condoms. (PT, 1987) N e v e r t h e l e s s , t h e 1987 e x t e r n a l review by Judy K r u e c k l stated that: the h i g h r i s k group i n q u e s t i o n i s n o t as informed as they ought t o be. I t c o u l d be t h a t s e v e r a l members o f t h i s p o p u l a t i o n are u s i n g a form o f d e n i a l which prevents them from a l t e r i n g t h e i r p r e s e n t l i f e s t y l e , (p. 16) R i s k behaviour had changed l i t t l e  from 1987 t o 1989.  A c c o r d i n g t o R i c k Marchand, a gay man and an educator  from  OISE: People acknowledge t h a t 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 n o t l i k e t o t a l k much about i t . But t h e overwhelming sense o f t h e gay community i s t h a t change has been t a k i n g p l a c e gay men a r e adopting r e s p o n s i b l e s e x u a l 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 p e r s o n a l change, even w i t h i n a community t h a t s t r i v e s f o r s o c i a l change i s a d i f f i c u l t p r o c e s s . (Marchand, 1989, p.54)  63  Marchand's 1989  e v a l u a t i o n , F i g h t i n g AIDS With  Report o f the Gay  Education:  Community Needs Assessment which  was  commissioned by AIDS Vancouver t o assess the e d u c a t i o n needs o f the gay community, a l s o i d e n t i f i e d t h a t gay men  wanted  more s o p h i s t i c a t e d and p o s i t i v e messages t o h e l p them d e a l w i t h the complex i s s u e s around s u s t a i n i n g changes i n s e x u a l behaviours.  The two most s i g n i f i c a n t recommendations o f h i s  r e p o r t were: Continue b a s i c i n f o r m a t i o n on HIV t r a n s m i s s i o n and p r e v e n t i o n t o the gay community, a range of m a t e r i a l s t o go out i n v a r i o u s ways. The c h a l l e n g e i s t o be i n n o v a t i v e and r e s p o n s i v e t o the community. The s h e l f l i f e of messages i s s h o r t 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, s a f e r sex c a r d s , pamphlets t o the community; running p o s t e r campaigns, and promoting resource c e n t r e s and l i b r a r i e s of AIDS i n f o r m a t i o n t o the gay p o p u l a t i o n . (Marchand, 1989, p. 7) and Outreach programs must be developed t o s e v e r a l groups w i t h i n the gay community. AIDS educators need t o ensure the e n t i r e community i s r e c e i v i n g a p p r o p r i a t e e d u c a t i o n a l m a t e r i a l s . A l o n g term s t r a t e g y f o r e d u c a t i o n of gay men must i n c l u d e campaigns t h a t can address a spectrum o f needs around HIV i s s u e s 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 i n t e r v i e w e d f a c i l i t a t o r s  on  the k i n d s o f q u e s t i o n s asked d u r i n g i n f o r m a t i o n programs. The content o f hot l i n e c a l l s were recorded and r e g u l a r l y . Staff and v o l u n t e e r s observed  analyzed  programs i n o r d e r  t o d i s c e r n more f u l l y the group dynamics and p a t t e r n s o f i n t e r a c t i o n . These responses,  o b s e r v a t i o n s , and  analyses  64 became the raw  materials  were c o n s t r u c t e d .  from which new  Marchand's 1989  report  education  programs  stated:  data was [ s i c ] c o l l e c t e d i n a number ways. A community-wide survey was run. C o n f i d e n t i a l i n t e r v i e w s w i t h s e l e c t e d members o f the gay and b i s e x u a l male p o p u l a t i o n , as w e l l as w i t h s e l e c t e d and experienced p r o f e s s i o n a l s such as p h y s i c i a n s , t h e r a p i s t s , s o c i a l workers and r e s e a r c h e r s working w i t h gay and b i s e x u a l men. Meetings and d i s c u s s i o n s were h e l d w i t h AIDS e d u c a t i o n a l organizations. Observations were made o f evidence o f AIDS education i n Vancouver. O b s e r v a t i o n s were made about how gay and b i s e x u a l men t a l k e d about AIDS and s a f e r sex i n everyday l i f e . L i t e r a t u r e on needs assessment, b e h a v i o u r a l change and AIDS e d u c a t i o n a l programs was reviewed, (p. 16) Minutes from a board meeting a l s o r e v e a l t h a t AIDS Vancouver decided  t o 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 m a t e r i a l t o get the widest p o s s i b l e message across  (AIDS Vancouver, J u l y 1989). There was  no  discussion,  however, i f some board members o r educators were offended the use  o f s e x u a l l y e x p l i c i t v i s u a l m a t e r i a l . Much o f  by  the  s e x u a l l y e x p l i c i t m a t e r i a l s would not have been d i s p l a y e d i n " p u b l i c " p l a c e s , e s p e c i a l l y where c h i l d r e n would According education  be.  t o Marchand (1989), no m u l t i c u l t u r a l  e x i s t e d i n Vancouver and t h e r e was  room f o r  involvement by an o r g a n i z a t i o n l i k e AIDS Vancouver t o a s s i s t community o r g a n i z a t i o n s  i n p u t t i n g together  comprehensive programs f o r r a c i a l and 87).  He  e t h n i c groups  more (p.  stated:  AIDS educators i n community-based o r g a n i z a t i o n s and government h e a l t h programs must work more closely within the gay c u l t u r e i n d e v e l o p i n g e d u c a t i o n s e r v i c e s . . . . E d u c a t o r s must be r e s p o n s i v e t o the gay p o p u l a t i o n s needs and keep themselves informed through ongoing community r e s e a r c h and involvement. (AIDS Vancouver, 1989, p. 95)  65 Nevertheless  " c u l t u r e " as a c o n s t r u c t l a c k s homogeneity i n  l a b e l s such as L a t i n o , A s i a n , F i r s t Nations, reified  or  other  c a t e g o r i e s of race o r e t h n i c i t y i n Canada.  C u l t u r e i s not viewed as a m o n o l i t h i c term. Rather t h e r e are many v a r i a t i o n s on the u n d e r l y i n g theme o f c u l t u r e . An i n d i v i d u a l might be a working-class  A s i a n 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 i d e n t i f y the separate  i n f l u e n c e o f each o f these  elements. The term c u l t u r e , f o r AIDS Vancouver,  to  cultural then,  c o l l a p s e s what o t h e r s see as demographic v a r i a b l e s , such as age,  r a c e , r e l i g i o n , e t h n i c h e r i t a g e , socioeconomic s t a t u s ,  and gender i n t o one  c o n s t e l l a t i o n , t h a t f o r 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 . T h i s suggests t h a t the prevention education  s t r a t e g i e s do not b e g i n t o acknowledge  t h a t people a t r i s k f o r 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 e p i d e m i o l o g i c a l f o r m u l a t i o n of r i s k groups o r the t a r g e t audience. AIDS Vancouver redesigned  i t s e d u c a t i o n a l programs over  the next y e a r . In a d d i t i o n t o p r e m i s i n g  the  educational  s t r a t e g y on c u l t u r e , AIDS Vancouver's e d u c a t i o n a l  staff  t r i e d t o answer s e v e r a l q u e s t i o n s . AIDS Vancouver attempted t o get a p i c t u r e o f the i n f o r m a l r u l e s around  sexual  behaviour and drug use, the r u l e s t h a t communicate the v a l u e s and b e l i e f s h e l d by members o f the community. Some o f the q u e s t i o n s t h a t they asked are found i n the F a l l B.C.  1989  Persons w i t h AIDS n e w s l e t t e r : I s r i s k behaviour hidden o r open? Is r i s k behaviour valued? Does the group c o n s i d e r i t s e l f a group? Who are l e a d e r s and r o l e models w i t h i n the c u l t u r e ? Where does the group get i n f o r m a t i o n  about sex and h e a l t h ? What k i n d of sex t a l k takes p l a c e w i t h i n the group? What are the p o s i t i v e i d e n t i t i e s a v a i l a b l e t o the group? What does the group know now? (p.8) Moreover, the o r g a n i z a t i o n r e c o g n i z e d the r i s k of AIDS i n young people. The S p r i n g 1990 N e w s l e t t e r addresses t h i s  B. C. Persons w i t h AIDS  concern:  How s e r i o u s a r i s k i s AIDS f o r young people. We know t h a t HIV can i n f e c t anyone young o r o l d as behaviour exposes them t o the v i r u s . Adolescence can be a p e r i o d o f profound p h y s i c a l and p s y c h o l o g i c a l change and b e h a v i o u r a l experimentation....Young people need t o be aware o f the p o s s i b l e consequences of u n p r o t e c t e d s e x u a l i n t e r c o u r s e and experimentation w i t h 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  significant:  C u l t u r a l t r a d i t i o n , f e a r s or o t h e r b a r r i e r s may prevent young people from l e a r n i n g about s e x u a l t r a n s m i s s i o n and o t h e r modes of t r a n s m i s s i o n o r from a c t i n g on what they have. Parents and community l e a d e r s may not support communication about s e x u a l matters because they may not wish t o acknowledge t h a t many young people are a l r e a d y sexually a c t i v e . In areas where t h e r e are no c u l t u r a l b a r r i e r s to frank discussion, h e a l t h promotion programs which address s e x u a l i t y many not e x i s t because o f the l a c k o f r e s o u r c e s o r because r i s k i s not p e r c e i v e d , (p.3) In the f a l l of 1990, i n i t i a t i v e f o r gay men  AIDS Vancouver launched a  new  e n t i t l e d the "Man-to-Man" program.  I t had s e v e r a l key components. The "Rubberware Home P a r t i e s " were d e s c r i b e d as c a s u a l , fun, and  interactive  evening s e s s i o n s on HIV p r e v e n t i o n and e d u c a t i o n . They took p l a c e i s l i v i n g rooms around the Lower Mainland. "Operation Latex S h i e l d " was  the newest area of the  to-Man" program. I t i n v o l v e d outreach i n p u b l i c environments.  "Man-  sex  V o l u n t e e r s o f f e r e d condoms, f r e e o f charge,  and on the spot c o u n s e l l i n g . The d i r e c t o r of the "Man-toMan"  program, C h r i s t o p h e r Koth, noted t h a t "not  everyone  67  seemed open t o the e x p e r i e n c e " (AIDS Vancouver, Contact F a l l 1990,  p.6). He  stated that:  T h i s i s O.K. i n our minds, t h i s workshop i s guaranteed t o provoke a l l s o r t s o f r e a c t i o n s and p e r s p e c t i v e s , a l l of which are v a l i d . One i n d i v i d u a l r a i s e d an i n t e r e s t i n g p o i n t when he i n s i s t e d t h a t t o use the term n e g o t i a t i o n was i n a p p r o p r i a t e . There should be no room f o r n e g o t i a t i n g 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 t o have focussed more upon the emotional and not the p h y s i c a l i s s u e s i n v o l v e d w i t h t r a n s m i s s i o n . (Koth, 1990, p. 6) As a r e s u l t of t h i s o b s e r v a t i o n ,  AIDS Vancouver  developed a program t o t r a i n more v o l u n t e e r s  t o back up  emotional support systems. However, the forms of male s e x u a l i t y r e l a t e d t o AIDS t r a n s m i s s i o n r e s t r i c t e d t o gay men;  are c e r t a i n l y not  they are forms o f male s e x u a l i t y t h a t  have long been c e l e b r a t e d and promoted. In other words, they are c u l t u r a l l y c r e a t e d and masculinity,  reproduced i n ideas o f hegemonic  c h i l d - r e a r i n g patterns,  and  the  constant  s e l l i n g o f sex as a commodity. S o c i e t y i s a l s o  only  b e g i n n i n g t o come t o terms w i t h the hidden world o f b i s e x u a l men  i n heterosexual  marriages who  are i n v i s i b l e t o most AIDS  programs, y e t are c r u c i a l l y important f o r transmission  p r e c i s e l y because of the l e v e l s of  i n v o l v e d . I t was those men  who  have sex w i t h other men,  AIDS Vancouver was AIDS. In the F a l l 1990 wrote:  secrecy  a l s o important t o c o n s i d e r the needs o f  themselves as p a r t o f the gay  volunteer,  disease  but do not view  ("Eurocanadian") community.  concerned about news coverage o f i s s u e o f Contact, Cindy L e t t s , a  68 R e c e n t l y , AIDS has been r e g u l a t e d t o s e c o n d - s t r i n g s t a t u s i n favour of environmental i s s u e s . P a r t l y because they are e a s i e r t o cover, no l o n g e r do the i n f o r m a t i o n l o r d s have t o g r a p p l e w i t h such b u r n i n g i s s u e s as, "Can we say sperm on TV?" Environmentalism i s s a f e : the language i s i n o f f e n s i v e and the i s s u e s cosy and p o l i t i c a l l y c o m f o r t a b l e . No f e a r here of anyone b e i n g offended i f t h e t o p i c of the day i s r e c y c l i n g , r a t h e r than t e a c h i n g your youngster about AIDS p r e v e n t i o n 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 t h a t the media have become d i s i n t e r e s t e d i n AIDS. (p.70) In t h e S p r i n g 1991  i s s u e o f Contact. R i c k Marchand  s t a t e d t h a t "homophobia c o n t i n u e s t o be the g r e a t e s t o b s t a c l e t o d e l i v e r i n g comprehensive AIDS p r e v e n t i o n e d u c a t i o n i n Canada" (p. 13). He went f u r t h e r by s a y i n g : Homophobia i s the f e a r of h a t r e d of homosexuals and homosexuals f e e l i n g s . Probably a more a c c u r a t e word t o h e l p us d e s c r i b e the o p p r e s s i o n t h a t i s experienced by gay and l e s b i a n people i s heterosexism. Our sexual and c u l t u r a l mores ensure t h a t h e t e r o s e x u a l i t y i s v a l u e d and p r e f e r r e d , w h i l e o t h e r s e x u a l i t i e s are excluded, s i l e n c e d , and hidden, (p. 13) Minutes  o f a board meeting i n May  member maintained  1991  r e v e a l e d t h a t a board  "many s t i l l b e l i e v e t h a t AIDS i s a gay  d i s e a s e . A t the same time, as a s o c i e t y we s t i l l  haven't  acknowledged the d e v a s t a t i n g e f f e c t AIDS has had on men."  This i s s t i l l  gay  an i s s u e i n the gay community today;  how  many deaths does i t take t o l e g i t i m i z e a c u l t u r e w i t h i n society? During 1991,  AIDS Vancouver e s t a b l i s h e d I n f o Centres i n  20 l o c a t i o n s throughout  the gay community/ a l l o w i n g t h e i r  p r i n t m a t e r i a l t o be more r e a d i l y a v a i l a b l e ( W i l l i a m s , Contact, S p r i n g 1991,  p. 5 ) . E d u c a t i o n S e r v i c e s and  other  departments a t AIDS Vancouver p a r t i c i p a t e d i n a number of  69 p u b l i c awareness events (p. 5 ) . These i n c l u d e d World AIDS Days, the Gay  P r i d e F e s t i v a l , and the "newly e s t a b l i s h e d  AIDS Awareness Week" (p. 5 ) . As w e l l , "AIDS Vancouver a l s o o r g a n i z e d and p a r t i c i p a t e d i n community forums, and  s e t up  i n f o r m a t i o n booths a t l o c a t i o n s ranging from west s i d e shopping m a l l s t o West End n i g h t c l u b s " (p. 5 ) . The continued  t o be a major source of i n f o r m a t i o n and  Helpline support.  With a p o o l o f 80 v o l u n t e e r s , the H e l p l i n e operated a week. On average the H e l p l i n e handled 1,000  63 hours  c a l l s a month  (P- 5 ) . In AIDS Vancouver's 1992  Annual Report. R i c k Marchand  says: AIDS Vancouver has s p e c i a l c h a l l e n g e s i n t h i s r e g i o n o f the country. Vancouver has the h i g h e s t per c a p i t a r a t e of AIDS i n Canada. Years of S o c i a l C r e d i t government have helped t o m a i n t a i n the w a l l o f d e n i a l t h a t e x i s t s i n the c o r p o r a t e world and i n B. C.'s workplaces, c e n t r a l arenas i n the development o f s u p p o r t i v e environments f o r persons l i v i n g w i t h HIV. (p. 1) Despite  f i n a n c i a l c h a l l e n g e s the o r g a n i z a t i o n launched a  e d u c a t i o n a l campaign. A March 1992  n e w s l e t t e r t i t l e d "AIDS  Vancouver's Man-to-Man Program Launches New Campaign," M a t t e r Who  read "Gay, We  S a f e r Choices new  Are. We  Education  B i s e x u a l , Or S t r a i g h t - I t doesn't a l l have Choices,  S a f e r Choices  f o r L i f e . " C h r i s t o p h e r Koth, a gay man  d i r e c t o r o f the new  program, maintained  i t was  and  b e l i e v e d t h a t the program was  Koth  p r e c e d e n t - s e t t i n g because  " t h i s i s the f i r s t time, t h a t I'm  Gay  the  chosen t o  emphasize p e r s o n a l r e s p o n s i b i l i t y i n sexual behaviour.  education  new  aware o f , when an AIDS  campaign i n the c i t y has spoken so d i r e c t l y t o the  and B i s e x u a l community." Koth a l s o was  quoted s a y i n g  70 t h a t "No apology i s made t o those who might t h i n k t h i s i s unnecessary o r not broad enough i n i t s approach. Gay and B i s e x u a l men, as w i t h a l l people, deserve t o r e c e i v e d i r e c t i n f o r m a t i o n which g i v e s them o p t i o n s and u l t i m a t e l y ,  save  l i v e s . " Koth i n d i c a t e d t h a t t h e r e were s t i l l no complementary e d u c a t i o n a l s t r a t e g i e s w i t h i n t h e p r o v i n c e . The f a l l 1992 i s s u e o f Contact r e v e a l e d t h a t "the education s t a f f of  [.at AIDS Vancouver]  p r o f e s s i o n a l s with the s k i l l s  i s now comprised [ s i c ]  t o employ both q u a l i t a t i v e  and more formal q u a n t i t a t i v e methods o f assessment" AIDS Vancouver was s t i l l of  (p. 3 ) .  employing s t r u c t u r e d o b s e r v a t i o n s  t h e audience. A c c o r d i n g t o a v o l u n t e e r i n t h e f a l l 1992 n e w s l e t t e r ,  The V o l u n t e e r V o i c e , women would f r e q u e n t l y take f i r s t a brochure w i t h a t i t l e d i r e c t e d t o gay men because  i t was  more c o l o u r f u l than t h e brochure w i t h "women" i n i t s t i t l e . Moreover,  r e c i p i e n t s o f i n f o r m a t i o n were observed t o skim  through brochures i n no p a r t i c u l a r o r d e r r a t h e r than r e a d i n g from b e g i n n i n g t o end. most c r i t i c a l  As a r e s u l t o f t h i s i n f o r m a t i o n , t h e  i n t r o d u c t o r y brochure, which was designed t o  a c q u a i n t a more broad audience w i t h HIV and r i s k was  reduction,  r e d e s i g n e d t o be more c o l o u r f u l than t h e o t h e r  p u b l i c a t i o n s competing  f o r t h e audience's a t t e n t i o n . I t was  a l s o r e w r i t t e n i n t o a modular s t y l e , w i t h p a r t i c u l a r l y important i n f o r m a t i o n h i g h l i g h t e d , so t h a t t h e r e c i p i e n t c o u l d g e t a meaningful amount o f i n f o r m a t i o n from skimming the  t e x t and s m a l l u n i t s o f type c o u l d be read i n any o r d e r  and s t i l l make a coherent e d u c a t i o n a l message.  71 Educators a t AIDS Vancouver have o f t e n s t r u g g l e d w i t h d e s i g n s t h a t 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 e d u c a t i o n a l s t a f f have regarded e v a l u a t o r s as people  who  s p l i t h a i r s i n o r d e r t o make t h e i r jobs more d i f f i c u l t r a t h e r than as teammates who  were working toward the same  ends. In s h o r t , b e i n g open t o changes i s e a s i e r s a i d  than  done. Knowing from the o u t s e t t h a t r e v i s i o n i s both n e c e s s a r y and i n e v i t a b l e h e l p s make the p r o c e s s e a s i e r .  In  AIDS Vancouver's experience, however, the b e s t remedy f o r t h i s brand o f t e r r i t o r i a l i t y  has been the a c t i v e  involvement  i n program d e s i g n and e x e c u t i o n by members o f the t a r g e t community  (Personal j o u r n a l s , PT,  t o minutes from a December 1992 involvement  1992;  JM,  1992). A c c o r d i n g  board meeting, t h i s  has helped program s t a f f and v o l u n t e e r s  r e c o g n i z e t h a t a s u c c e s s f u l program u l t i m a t e l y must belong to  the community i t s e r v e s , r a t h e r than t o i t s i n v e n t o r s and  facilitators. The p e r s o n a l j o u r n a l s a t t e s t t o the f a c t t h a t AIDS Vancouver understands i t serves  (JM, 1989;  i t s e l f t o be accountable t o the PT,  1992).  w i t h i n the o r g a n i z a t i o n was  people  However, a c c o u n t a b i l i t y  an i s s u e . In the August 1992  V o l u n t e e r V o i c e n e w s l e t t e r , David Ross, a v o l u n t e e r and a p r o f e s s o r o f h i s t o r y a t S.F.U. s a i d : While n o t h i n g 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 t o r e s t o r e and i n s p i r e c o n f i d e n c e i n the working o f the system....what i s needed i s a r e v i s i o n o f appointments g u i d e l i n e s and an u n d e r t a k i n g o f due procedure. (p.10)  The  72 Another l e t t e r addressed t o Mark Mees who  was  a t the  time  the d i r e c t o r of AIDS Vancouver i s more r e v e a l i n g w i t h regards t o a c c o u n t a b i l i t y w i t h i n the o r g a n i z a t i o n and i t s a c c o u n t a b i l i t y t o s o c i e t y . Nancy I l l m a n , a v o l u n t e e r , lamented i n the August 1992  The V o l u n t e e r V o i c e ;  U n f o r t u n a t e l y , I b e l i e v e t h a t t h e r e i s f a r too much h i g h - s c h o o l g i r l s ' washroom behaviour b e i n g i n d u l g e d by the gay community s p e c i f i c a l l y , and t h a t i t i s t h i s u n f o r t u n a t e behaviour which has c r e a t e d most o f the t e n s i o n surrounding p e r s o n n e l changes. Some people have chosen t o l i v e t h e i r l i v e s by p i c k i n g s s i d e s and l i n i n g up t o take cheap shots a t the o t h e r s i d e . (AIDS Vancouver, p. 11) As a r e s u l t o f the c r i t i c i s m s , of 1992  AIDS Vancouver i n the  p u b l i s h e d a p o l i c y statement,  P o l i c i e s . Furthermore,  fall  t i t l e d Organizational  an " E t h i c s Committee" was e s t a b l i s h e d  t o " a s s i s t us i n s e r v i n g as a p r a c t i c a l guide f o r p r o f e s s i o n a l behaviour and the maintenance o f a reasonable s t a n d a r d o f p r a c t i c e w i t h i n a g i v e n c u l t u r a l c o n t e x t " (AIDS Vancouver, The V o l u n t e e r V o i c e . 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 e s t a b l i s h m e n t of the committee was  the  concern over the p r a c t i c e of patronage. AIDS Vancouver not h i r i n g p r o f e s s i o n a l s o u t s i d e the gay  community.  As Dr. John Blatherwick, i n h i s Annual Report M e d i c a l H e a l t h O f f i c e r o f the C i t y of Vancouver  of  (1987),  stated: In 1987, the p u b l i c h e a l t h arena was dominated by AIDS...The d i s e a s e i n the C i t y of Vancouver c o n t i n u e d t o be r e p o r t e d predominantly i n the gay p o p u l a t i o n . In t h i s group, t h e r e were i n d i c a t o r s t h a t the spread of the AIDS v i r u s had been g r e a t l y reduced. In 1987, t h e r e were 120 c l i n i c a l cases o f AIDS i n B r i t i s h Columbia, an i n c r e a s e o f 16 cases from 1986. AIDS cases d i d not reach 200 cases i n 1987, a number p r e d i c t e d by many. Whether new cases o f AIDS w i l l continue t o p l a t e a u i n unknown,  was  but i t i s encouraging the d i s e a s e , (p.5)  t o those people working w i t h  A c c o r d i n g t o B l a t h e r w i c k ' s 1987  r e p o r t , AIDS s u r v e i l l a n c e  and AIDS e d u c a t i o n a l a c t i v i t i e s i n c r e a s e d s i g n i f i c a n t l y  and  " l i a i s o n w i t h o t h e r i n v o l v e d agencies a l s o r e q u i r e d g r e a t e r time commitment from the Communicable Disease C o n t r o l Section"  (p.19). H e a l t h o f f i c i a l s encouraged the Vancouver  School Board t o develop AIDS programs f o r grade 12 s t u d e n t s . The c i t y i n s i s t e d t h a t the p r o v i n c i a l government was  still  not adequately  a d d r e s s i n g the emergent h e a l t h  c r i s i s . Furthermore, the c i t y r e c o g n i z e d the p o t e n t i a l o f d i s e a s e s p r e a d i n g i n t o the g e n e r a l p o p u l a t i o n . During 1988, f o r Managing HIV 1988, HIV  C i t y C o u n c i l approved  p o l i c y "Guidelines  I n f e c t i o n s i n the Workplace"  (Blatherwick,  p. 7 ) . A matter of i n c r e a s i n g concern d u r i n g 1988  was  i n f e c t i o n i n the intravenous drug-using p o p u l a t i o n .  While l a c k i n g i n f o r m a t i o n as t o the extent of the problem, the "Health Department secured approval t o i n i t i a t e a needle exchange program i n t h i s group commencing" i n (Blatherwick, 1988,  1989  p. 7 ) .  Dr. B l a t h e r w i c k , i n h i s Annual Report  of the M e d i c a l  H e a l t h O f f i c e r of the c i t y o f Vancouver (1989) s t a t e d t h a t : The AIDS epidemic continued t o be a problem f o r the e n t 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 p o p u l a t i o n ) was the i n t r o d u c t i o n of Needle Exchange Programs, a d m i n i s t e r e d i n c o n j u n c t i o n w i t h the Downtown E a s t s i d e Youth A c t i v i t i e s S o c i e t y . Enrollment i n the Program soared beyond i n i t i a l e x p e c t a t i o n s ( i n 1989 an estimated 2,700 i n d i v i d u a l s made use of the s e r v i c e ) . Plans f o r a d e t a i l e d e v a l u a t i o n of the impact of t h i s program are underway f o r 1990. (pp. 2-3)  74 Of t h e 189 cases o f AIDS r e p o r t e d i n B. C. d u r i n g 1989, a 21% i n c r e a s e over 1988, t h e r e 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 p r e v i o u s y e a r s . " A l l b u t 2 o f t h e cases o c c u r r e d i n men w i t h 3/4 o f them b e i n g between t h e ages o f 30 and 49. Two newborns were e i t h e r i n f e c t e d d u r i n g pregnancy  or delivered  from p r e v i o u s l y - i n f e c t e d  mothers.  Sexual t r a n s m i s s i o n accounted f o r over 95% o f t h e c a s e s " (Blatherwick, 1989, p. 17). John B l a t h e r w i c k i n h i s Annual Report o f t h e M e d i c a l H e a l t h O f f i c e r o f t h e C i t y o f Vancouver (1991) wrote about the "New Plague - t h e Scourge o f AIDS" (p. 2 ) . He a l s o stated  t h e " f e d e r a l government announced i t s N a t i o n a l AIDS  S t r a t e g y i n 1990 and t h e work o f t h e Vancouver H e a l t h Department i s an important f o u n d a t i o n on which t h e N a t i o n a l AIDS S t r a t e g y depends" (p.3). F o r t h e f i r s t time, t h e number of new cases dropped Vancouver.  from 212 i n 1989 t o 189 i n 1990 i n  However, t h e d i s t r i b u t i o n o f 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% o f t h e p o s i t i v e t e s t s (where sex has been i d e n t i f i e d ) a r e i n women, w h i l e o n l y 1.8% o f AIDS cases a r e i n women; 1% o f AIDS cases have been noted i n persons whose o n l y r i s k f a c t o r i s i n j e c t a b l e drug use, where 3.5 o f p o s i t i v e t e s t i n B. C. (6.1% i n Vancouver) a r e i n t h i s group; persons w i t h no i d e n t i f i e d r i s k f a c t o r s r e p r e s e n t l e s s than 1 % o f t h e AIDS cases b u t a r e noted i n 2.3% o f p o s i t i v e HIV t e s t i n Vancouver - these i n f e c t i o n s may w e l l a r i s e from c a s u a l s e x u a l c o n t a c t s ; h e t e r o s e x u a l r i s k f a c t o r s account f o r 2 % o f AIDS cases b u t more than 4 % o f p o s i t i v e t e s t s . (Blatherwick, 1991, p.12) Furthermore,  these comparisons  suggest "the spread o f HIV  i n f e c t i o n s t o o t h e r than homosexual men i n g r e a t e r number each y e a r s . While t h e spread i s u n l i k e l y t o be e x p l o s i v e ,  75 i t w i l l c o n t i n u e u n l e s s more r e s o u r c e s a r e devoted t o education"  (Batherwick,  1991, p. 12). S i n c e 1989 t h e c i t y  o f 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 i n d i c a t e s a s h i f t i n t h e c i t y AIDS p r i o r i t i e s . The government o f B r i t i s h Columbia s t a r t e d f o r m u l a t i n g i t s AIDS p o l i c y around t h e same time as t h e C i t y o f Vancouver. I n t h e Annual Report  (1986/87) o f t h e B r i t i s h  Columbia M i n i s t r y o f H e a l t h , AIDS was mentioned f o r t h e f i r s t time.  The document s t a t e s t h a t t h e m i n i s t r y was  engaged i n t h e "development o f a comprehensive AIDS p u b l i c awareness and i n f o r m a t i o n program f o r t h e p u b l i c , h e a l t h c a r e workers, and p h y s i c i a n s " (p.20).  The same r e p o r t  s t a t e d t h a t t h e number o f p a t i e n t v i s i t s t o t h e p r o v i n c i a l Centre f o r Disease C o n t r o l i n c r e a s e d  from 820 i n 1985/86  t o 2107 i n 1986/87 (p. 27). I n t h e same y e a r , t h e p r o v i n c i a l government proposed an amendment t o t h e H e a l t h A c t g i v i n g medical h e a l t h o f f i c e r s powers o f s a n c t i o n s , i n c l u d i n g quarantine, t o r e s t r i c t those who  expose o t h e r s  t o HIV o r AIDS. T h i s was t h e change t h a t some p u b l i c h e a l t h 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 t h e government's c o n s e r v a t i v e agenda. N e v e r t h e l e s s , p r o t e c t i o n a g a i n s t d i s c r i m i n a t i o n f o r people w i t h AIDS and HIV was secured by a 1988 d e c i s i o n o f the B r i t i s h Columbia C o u n c i l o f Human R i g h t s which a p p l i e d p r o v i s i o n s o f t h e 1984 Human R i g h t s A c t on p h y s i c a l disability.  76 However, one program d i d i l l u s t r a t e t h e c a p a c i t y o f the p r o v i n c e ' s AIDS a d m i n i s t r a t o r s t o use e s t a b l i s h e d programs i n i n n o v a t i v e ways. The s t r e e t 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 b l u e  j e a n s " program f o r drug u s e r s i n t h e 1960s. Without t h e need f o r l e g i s l a t i v e a p p r o v a l , t h e program grew from one nurse t o seven, o p e r a t i n g out o f t h r e e s t o r e f r o n t  offices.  The nurses had a l r e a d y been d i s t r i b u t i n g condoms p r i o r t o AIDS, and simply continued doing so, a l o n g w i t h o f f e r i n g c o u n s e l l i n g and anonymous t e s t i n g t o prevent  infections  from HIV. In t h e B. C. M i n i s t r y o f H e a l t h Annual Report (1987/88) t h e government announced t h a t "the major h e a l t h problems today a r e c h r o n i c d i s e a s e o f middle and l a t e r - a g e , h e a r t d i s e a s e , s t r o k e and cancer, and l i f e s t y l e c h o i c e s o f the i n d i v i d u a l " Annual Report  (p.20). N e v e r t h e l e s s t h e 1987/88 p r o v i n c i a l  continued:  The d i s t r i b u t i o n t o secondary s c h o o l s , p u b l i c l i b r a r i e s , and over 500 v i d e o s t o r e s o f AIDS: t h e New Epidemic. The m a i l i n g o f AIDS pamphlets t o 1.2 m i l l i o n households. The p r o d u c t i o n o f "AIDS i n t h e Workplace:; an i n f o r m a t i o n package f o r management and employees. Development, w i t h t h e M i n i s t r y o f Education, of a comprehensive f a m i l y l i f e e d u c a t i o n program, which was i n t r o d u c e d i n t o Grades 7 through 12 i n September o f 1987. (p. 21) The government's grade 7 t o 12 c u r r i c u l u m emphasized a b s t i n e n c e from non-marital sex. The a b s t i n e n c e message reinforced  t h e n o t i o n t h a t AIDS and o t h e r STDs a r e  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 o f t e n i n t e r p r e t e d as an a c t o f  77  i n t i m a c y and t r u s t , and so unprotected sex i s h i g h l y p r o t e c t e d w i t h i n the c u l t u r e because o f i t s a s s o c i a t i o n w i t h those v a l u e s . For many women, f o r example, u n p r o t e c t e d  sex  draws i t s v a l u e from i t s r e l a t i o n s h i p w i t h c h i l d b e a r i n g and motherhood, which i s f o r some women, the  only  rewarded r o l e open t o them. From a c u l t u r a l  socially  standpoint,  then, r i s k r e d u c t i o n r e p r e s e n t s a s i g n i f i c a n t t h r e a t t o c l o s e l y h e l d b e l i e f s and v a l u e s . In 1989,  no mention o f AIDS was  made i n the B.  G.  M i n i s t r y o f H e a l t h Annual Report. Once again, AIDS was problem c o n c e r n i n g the g e n e r a l p u b l i c . In 1990, Columbia was  UP.  AZT  made a v a i l a b l e , f r e e o f  t o those e l i g i b l e f o r w e l f a r e . As a r e s u l t , some  members o f PWA ACT  British  the o n l y p r o v i n c e t h a t r e f u s e d t o p r o v i d e  f r e e t o a l l AIDS p a t i e n t s . I t was charge,  not a  C o a l i t i o n broke away and formed a new  L i k e i t s American c o u n t e r p a r t s , ACT  UP  group,  used  a g g r e s s i v e , dramatic techniques t o c r i t i c i z e the p r o v i n c i a l government f o r i t s f a i l u r e t o s u b s i d i z e c o s t s f o r AZT all  PWAs r e g a r d l e s s of t h e i r socioeconomic  for  status. After a  s e r i e s o f p u b l i c p r o t e s t s , the government announced i t would p r o v i d e AZT  t o a l l AIDS p a t i e n t s . More i m p o r t a n t l y , the  B r i t i s h Columbia AIDS Network was  formed t o b r i n g t o g e t h e r  r e p r e s e n t a t i v e s o f community groups, a l o n g w i t h h e a l t h and s o c i a l agencies a c r o s s the p r o v i n c e . T h i s i n d i c a t e d t h a t AIDS p o l i c y was  d i v e r g e n t and a comprehensive p l a n  was  needed. A c c o r d i n g the B. C. M i n i s t r y of H e a l t h Annual  Report  (1991/92), the S e x u a l l y Transmitted Disease C o n t r o l D i v i s i o n  78 "expanded i t s program f o r intravenous drug u s e r s t o  reduce  t r a n s m i s s i o n o f d i s e a s e s such as AIDS and H e p a t i t i s B i n Kelowna, Quensnel,  W i l l i a m s Lake, and P r i n c e George"  T h i s suggests t h a t the p r o v i n c i a l government was concerned  about AIDS i n the gay  (p.17).  still  not  community.  The B. C. M i n i s t r y o f H e a l t h a l s o expanded i t s AIDS p r e v e n t i o n e d u c a t i o n programs. In the 1992/93 Annual  Report.  t h e government announced: T h i s y e a r the S e x u a l l y T r a n s m i t t e d Disease C o n t r o l branch p r o v i d e d $2.5 m i l l i o n i n funds t o 52 community-based AIDS e d u c a t i o n p r o j e c t s . Through the S e n t i n e l P h y s i c i a n System and h e a l t h u n i t e l e c t r o n i c m o n i t o r i n g , s t a f f continued t o keep a c l o s e watch on the d i s t r i b u t i o n of STDs and AIDS. They a l s o c o n t i n u e d w i t h the f o l l o w i n g t a r g e t e d p r e v e n t i o n programs: Chlamydia and V e n e r e a l Warts C o n t r o l ; B r i t i s h Columbia N a t i v e Awareness; support f o r p r i s o n e r AIDS education, e d u c a t i o n f o r the gay community, (p. 28) F i n a l l y the government was educational  beginning t o d i v e r s i f y i t s  strategies.  During t h i s second e r a , the y e a r s from 1987  to  1992,  AIDS Vancouver's p r e v e n t i o n e d u c a t i o n programs were c o n s t r u c t e d by the gay community because gay men  had been  the overwhelming p a r t i c i p a n t s i n the programs. I n f o r m a t i o n gathered by o b s e r v a t i o n and i n t e r v i e w i n g as w e l l as were  surveys  u t i l i z e d t o d e s i g n AIDS Vancouver's p r e v e n t i o n  e d u c a t i o n programs. F i n a n c i a l d i f f i c u l t i e s and the l a c k o f government a s s i s t a n c e hampered AIDS p r e v e n t i o n e d u c a t i o n . o r g a n i z a t i o n was  a l s o h i n d e r e d by i t s own  The  i n t e r n a l problems  such as v o l u n t e e r d i s c o n t e n t over h i r i n g p r a c t i c e s o f p r o f e s s i o n a l s t a f f . The p r o v i n c i a l and c i t y government  79  began t o t a r g e t the intravenous drug u s i n g p o p u l a t i o n . T h i s h i g h l e v e l p o l i t i c a l i n t e r v e n t i o n o c c u r r e d o n l y when the t h r e a t t o the h e t e r o s e x u a l p o p u l a t i o n became c l e a r because the government d i d not c a r e so l o n g as merely  gay  men  and  were a f f e c t e d . C o n f l i c t between the gay community  " p r o f e s s i o n a l s " emerged over behaviour community. The  former maintained  change behaviour maintained  changes i n the  funding was  needed t o  i n the gay community, whereas the  some gay men  gay  were engaging i n h i g h  latter  risk  a c t i v i t i e s . Paid p r o f e s s i o n a l s 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 have been e s t a b l i s h e d and formal procedures adopted and reviewed.  institutions have been  AIDS has made s t r u c t u r a l changes t o  h e a l t h c a r e . I n t e r v e n t i o n s on the community, c i v i c , p r o v i n c i a l l e v e l s respond  and  t o 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 s e x u a l experience and intravenous drug u s i n g as r o o t e d i n c u l t u r a l meanings and  systems.  A c c o r d i n g t o The V o l u n t e e r V o i c e e d u c a t i o n department now and more than two  consists  ( F a l l 1993), the  of t e n or more educators  couple hundred v o l u n t e e r s (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 a r r a y o f programs. A c c o r d i n g t o the n e w s l e t t e r , "the programs are designed t o address  an  i n c r e a s i n g l y comprehensive range o f needs, from i n t e r v e n t i o n s t h a t are t a i l o r e d f o r people of l i m i t e d l i t e r a c y t o programs t h a t p r e s s toward u n t a n g l i n g deeper  80  psychological  barriers to consistent  b e h a v i o u r " (AIDS Vancouver, 1993,  long-term s a f e r  p.8).  sex  Three b a s i c k i n d s o f  programs are p r o v i d e d . F i r s t , AIDS Vancouver o f f e r s a v a r i e t y o f r i s k reduction  programs f o r people, i n c l u d i n g  interventions  f o r gay  men,  targeted  r e l a p s e p r e v e n t i o n programs  and  workshops designed t o a s s i s t people i n making informed decisions  about HIV  antibody t e s t i n g . Many are o f f e r e d i n  workshops t h a t encourage i n 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 t h r e e t o e i g h t hours. Theatrical presentation  and  i n t e r c e p t peer  counselling  models are a l s o employed f o r some audiences. V i r t u a l l y a l l o f these program s e r v i c e s are p r o v i d e d by volunteers,  trained  most o f whom are members o f the t a r g e t  audiences  from which the programs are designed. Second, i n f o r m a t i o n  forums g i v e H I V - i n f e c t e d people  the  f a c t s they need i n o r d e r t o 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 c a r e . These forums cover such  as c u r r e n t  therapies  f o r HIV  d i s e a s e and  i n f e c t i o n s , n u t r i t i o n , l e g a l i s s u e s , and  issues  opportunistic available financial  support. T h i r d , AIDS Vancouver o f f e r s programs through a v a r i e t y o f community groups such as churches, s c h o o l s , and  s o c i a l and  s a f e r sex  i s b a s i c AIDS  i n s t r u c t i o n . Most o f t h i s work i s g i v e n by  volunteers. and  professional organizations  employers,  The  hot  l i n e continues to provide  r e f e r r a l s e r v i c e s . The  educational  l i t e r a t u r e and  and  trained  information  e d u c a t i o n department d i s t r i b u t e s f r e e condoms t o those i n need o f  81 r i s k reduction information.  P r o f e s s i o n a l mental h e a l t h  c o u n s e l l o r s are a l s o t r a i n e d i n the ways t o make r i s k r e d u c t i o n i n f o r m a t i o n a v a i l a b l e t o the people they d e a l w i t h from day t o  day.  In the F a l l 1994  The V o l u n t e e r V o i c e . Marchand s t a t e s  t h a t "constant t e s t i n g of AIDS Vancouver's p r e v e n t i o n e d u c a t i o n r e v e a l e d unexpected l a y e r s o f emotion as  the  community i n t e r a c t e d w i t h the i n f o r m a t i o n about HIV  which  they encounter i n the e d u c a t i o n a l i n t e r v e n t i o n " (p. 2 ) . For example, when AIDS Vancouver began the implementation "Man  t o Man"  Program i n 1992  and  1993,  the workshop focused  on m a i n t a i n i n g s a f e r sex b e h a v i o r over time. facilitators  were s u r p r i s e d by how  of  The  much anger was  generated  w i t h i n the group d u r i n g the program. By d e b r i e f i n g facilitators,  r e v i e w i n g responses generated  during  e x e r c i s e s , and a s k i n g p a r t i c i p a n t s about t h e i r educators  experiences,  began t o get a t the r o o t o f the i s s u e . The  workshop focused on a l l the reasons  i t i s d i f f i c u l t to  m a i n t a i n s a f e r sex behavior and so brought forward  a l l of  the anger a t having t o make AIDS a permanent p a r t o f the s e x u a l landscape  i n the gay community. "Why  r o o t emotion many men  us?" was  the  seemed t o express; many were simply  e m o t i o n a l l y exhausted from d e a l i n g w i t h AIDS f o r so l o n g , e s p e c i a l l y without  l a r g e r community support. T h i s r e s u l t e d  i n c o n s i d e r a b l e a l t e r a t i o n o f some o f the e x e r c i s e s w i t h i n the workshop, so t h a t the p a r t i c i p a n t s had adequate time t o p r o c e s s t h e i r f e e l i n g s . I t a l s o made the program  designers  r e c o g n i z e t h a t 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 t h e v o l u n t e e r group l e a d e r s than had o r i g i n a l l y been a n t i c i p a t e d . As a r e s u l t , more experienced v o l u n t e e r s and v o l u n t e e r s w i t h mental h e a l t h experience were r e c r u i t e d f o r the program. These changes were accomplished g r a d u a l l y through t h e i n i t i a l  implementation  f a c i l i t a t o r s a r e encouraged education  o f t h e program and t h e  t o take an ad hoc approach t o  i n any g i v e n s e t t i n g .  A c c o r d i n g t o AIDS Vancouver's 1993 Annual Report, t h e e d u c a t i o n department maintains p r o d u c t i o n u n i t s f o r p u b l i c a t i o n and a u d i o v i s u a l m a t e r i a l s , an e d u c a t i o n a l r e s e a r c h team r e s p o n s i b l e f o r a s s i s t i n g w i t h program development and conducting e v a l u a t i o n s , and corps o f comprehensively description  t r a i n e d v o l u n t e e r s o f every demographic  (pp 1-8).  The budget o f AIDS Vancouver comes  from p u b l i c and p r i v a t e sources. However, l a c k o f adequate u n r e s t r i c t e d f u n d i n g has made program expansion e x c e e d i n g l y difficult  (AIDS Vancouver, Annual Report. 1993, p. 8 ) .  A c c o r d i n g t h e B. C. M i n i s t r y o f H e a l t h Annual  Report  (1994), evidence suggests t h a t t h e impact o f AIDS i s o c c u r r i n g more among s o c i a l l y and e c o n o m i c a l l y disadvantaged p o p u l a t i o n s . "For example, a Vancouver study o f men w i t h HIV i n f e c t i o n showed t h a t men w i t h lower socio-economic s t a t u s had s i g n i f i c a n t l y s h o r t e r s u r v i v a l than h i g h income men" (p. 17).  The same r e p o r t s t a t e s "there i s an a l a r m i n g i n c r e a s e  i n t h e number o f HIV i n f e c t i o n s among i n j e c t i o n drug u s e r s i n B r i t i s h Columbia.  Most cases have been r e p o r t e d from  Vancouver's Downtown E a s t s i d e , although t h e problem  i s not  c o n f i n e d t o t h a t a r e a " (p. 18). Most s i g n i f i c a n t l y , t h e  83 Annual Report r e v e a l s t h a t "the r a t e o f growth i n t h e HIV among i n t r a v e n o u s drug u s e r s i s s i m i l a r t o t h a t i n gay men i n t h e e a r l y t o mid-1980s. I f t h e t r e n d c o n t i n u e s , IDUs may soon overtake gay men as t h e r i s k group w i t h h i g h number o f positive tests" Report  (p. 18). F o r t h e f i r s t time, t h e Annual  (1994) made mention o f women:  F i v e o f every 10,000 pregnant women i n B. C. a r e HIV p o s i t i v e . Many o f these women a r e unaware t h a t they have been a t r i s k f o r HIV o r a r e infected. Babies born t o H I V - p o s i t i v e mothers have a 25% chance o f b e i n g HIV p o s i t i v e . Twot h i r d s o f these cases o f mother-rto-child t r a n s m i s s i o n can be prevented, i f HIV p o s i t i v e women take t h e AIDS drug AZT d u r i n g pregnancy and d u r i n g t h e b i r t h i n g p r o c e s s , (p.18) Based on these f i n d i n g s , t h e p r o v i n c i a l h e a l t h o f f i c e r recommended t h a t a l l pregnant women should be screened f o r HIV  i n f e c t i o n a f t e r adequate c o u n s e l l i n g and informed  consent. The problems o f AIDS among women have o n l y r e c e n t l y r e c e i v e d much a t t e n t i o n , w i t h t h e l a g a t t r i b u t a b l e , i n p a r t , t o t h e predominance o f narrow c o n s t r u c t i o n s o f AIDS. To date, women w i t h AIDS have tended t o be i g n o r e d and l e f t out o f programs because they d i d not f i t e a s i l y i n t o gay male groups, because t h e i r symptoms and c o n s t e l l a t i o n o f i n f e c t i o n s d i d n o t f i t Centers f o r Disease C o n t r o l (CDC) g u i d e l i n e s , o r simply because t h e AIDS p r e v e n t i o n e d u c a t i o n programs were s p e c i f i c a l l y designed f o r men. The t h i r d e r a i s v e r y much i n p r o g r e s s i n terms o f i t s i m p l i c a t i o n s , i t is therefore d i f f i c u l t conclusions.  t o o draw any hard and f a s t  84 Summary AIDS Vancouver has developed i n t o a Type Three o r g a n i z a t i o n as suggest by Mann (1992a). A c c o r d i n g (1992a), AIDS o r g a n i z a t i o n s information  evolve  from a Type  t o Mann  One  o r g a n i z a t i o n t o a Type Three community  advocacy  o r g a n i z a t i o n w i t h l i n k a g e s t o v a r i o u s h e a l t h and p r o f e s s i o n a l s e r v i c e s . AIDS Vancouver was a Type  One  o r g a n i z a t i o n d u r i n g the p e r i o d from 1983 t o 1986. By AIDS Vancouver had evolved  1992,  i n t o a Type Three o r g a n i z a t i o n .  However, t h e h i s t o r y o f AIDS i n Vancouver does not c o i n c i d e w i t h Mann's h i s t o r y o f AIDS. Mann (1992a) suggested t h a t t h e r e were t h r e e p e r i o d s  i n the h i s t o r y o f AIDS. F i r s t , t h e  p e r i o d o f s i l e n c e which ended i n 1981. Second, t h e p e r i o d o f d i s c o v e r y which ended i n 1985. T h i r d , t h e p e r i o d o f m o b i l i z a t i o n 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 m o b i l i z e  until  1987. I t i s e q u a l l y important t o note t h a t i n e f f e c t a p e r i o d o f s i l e n c e continues  because t h e r e i s v e r y  little  d i s c u s s i o n o f AIDS i n women and i n v a r i o u s e t h n i c groups. The h i s t o r y o f AIDS i n Vancouver a l s o does not c o i n c i d e w i t h Rayside & L i n g u i s t ' s (1992) h i s t o r y o f AIDS.  According  t o Rayside & L i n q u i s t , the h i s t o r y o f AIDS has moved through t h r e e d i s t i n c t p e r i o d s . The f i r s t began i n t h e e a r l y 1980s when AIDS was ignored.  The second p e r i o d  began  i n 1985 when a l l l e v e l s o f government made commitments t o AIDS programs. The t h i r d p e r i o d began i n 1988 when Canada developed a coherent AIDS s t r a t e g i e s . The h i s t o r y o f AIDS i n Vancouver r e v e a l e d t h a t the c i v i c and p r o v i n c i a l  85 government d i d not commit t o AIDS programs u n t i l 1987. Furthermore,  there i s s t i l l  the P r o v i n c e o f B r i t i s h  no coherent AIDS s t r a t e g y i n  Columbia. In t h e next chapter, I  move t h e d i s c u s s i o n t o those i s s u e s surrounding AIDS p r e v e n t i o n e d u c a t i o n t h a t were found i n t h e documents.  86 CHAPTER  FIVE:  DISCUSSION  T h i s study has y i e l d e d i n f o r m a t i o n i n response t o t h e following guiding research  questions:  1) What i s b e i n g s a i d about AIDS? 2) To whom and f o r whom i s i t b e i n g s a i d ? 3) How i s i t b e i n g s a i d ? L u r k i n g behind these q u e s t i o n s i s the f o l l o w i n g q u e s t i o n , Whom has had the power t o d e f i n e AIDS d i s c o u r s e ? The d i s c u s s i o n responds t o the r e s e a r c h q u e s t i o n and reviews f i n d i n g s i n r e l a t i o n t o the l i t e r a t u r e . The subsequent a n a l y s i s c e n t e r s around how AIDS d i s c o u r s e s have been a f f e c t e d by s o c i o - c u l t u r a l and b i o d e t e r m i n i s t i c f a c t o r s and attempts t o express the hidden meanings i n the d i s c o u r s e . AIDS i n Context AIDS seemed t o appear o u t o f h i s t o r i c a l c o n t e x t . I t p r o p e r l y belonged t o a d i s t a n t and l e s s comfortable  past,  b e f o r e economic and s c i e n t i f i c progress had combined t o b a n i s h the " a n c i e n t " 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 w i t h a "modern" p a t t e r n o f c h r o n i c d i s e a s e s such as cancer and h e a r t  disease  and have i n c l u d e d a l o n g l i s t o f d i s a g r e e a b l e , b u t n o n - f a t a l i l l n e s s e s . Mass i n f e c t i o u s d i s e a s e s had ceased t o command the a t t e n t i o n o f h e a l t h p o l i c y a n a l y s i s i n the advanced i n d u s t r i a l world  (Gould,  1990;  F a u c i , 1991). The P r o v i n c e o f  B r i t i s h Columbia and the C i t y o f Vancouver d i d n o t pay much a t t e n t i o n t o AIDS u n t i l the mid-1980s. The documents do n o t r e v e a l whether the m i n i s t r y and c i v i c h e a l t h department were doing r e s e a r c h i n the community and i f any funds were made  87 a v a i l a b l e f o r such i n v e s t i g a t i o n s . T h i s study suggests t h a t gay men i n Vancouver and i n t h e advanced i n d u s t r i a l i n g e n e r a l world p e r c e i v e d AIDS as b e i n g i n f e c t i o u s . Gay men had d e f i n e d h e a l t h p o l i c y and r e j e c t e d t h e " l i f e s t y l e " h y p o t h e s i s developed 1983.  i n t h e U n i t e d S t a t e s between 1981 and  However, p r e v e n t i o n e d u c a t i o n programs emphasized  " l i f e s t y l e " o r b e h a v i o u r a l changes t o prevent d i s e a s e and t o reduce o r e l i m i n a t e symptoms a s s o c i a t e d w i t h AIDS. AIDS a l s o c h a l l e n g e s t h e assumption t h a t t h e l a t e  20th  c e n t u r y d i v i s i o n o f d i s e a s e s i n t o i n f e c t i o u s and c h r o n i c d i s o r d e r s n a t u r a l l y f i t t e d economic and geographic d i s t r i b u t i o n , w i t h t h e c h r o n i c d i s e a s e s appearing  i n highly  i n d u s t r i a l i z e d n a t i o n s and s e r i o u s i n f e c t i o u s d i s e a s e s i n l e s s developed understanding  c o u n t r i e s (Gorund, 1993). An e p i d e m i o l o g i s t ' s of the transmission of i n f e c t i o u s disease i s  much d i f f e r e n t from a l a y p e r s o n ' s , and i s c h a r a c t e r i z e d by the c l a s s i f i c a t i o n o f d i s e a s e agents i n t o  specific  c a t e g o r i e s such as f e c a l , o r a l , r e s p i r a t o r y , v e c t o r borne, and s e x u a l l y t r a n s m i t t e d . F o r many l a y p e r s o n s , d i s e a s e i s c l a s s i f i e d i n a much more u n d i f f e r e n t i a t e d way, t h a t i s , c o n t a g i o u s , v e r y contagious, and not c o n t a g i o u s . Thus, once AIDS becomes g l o s s e d as "contagious" i t may be spread i n a l l s o r t s o f ways, even i f i t i s understood  t o be "not v e r y  c o n t a g i o u s . " The c o n n e c t i o n o f t h e term " v i r u s " t o AIDS may a l s o impute a c e r t a i n a s s o c i a t i o n w i t h  "contagiousness."  When e x p e r t s say t h a t AIDS i s not t r a n s m i t t e d by c a s u a l c o n t a c t , what do they mean? I s i t t r a n s m i t t e d l i k e  other  v i r u s e s ? " 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  d i s e a s e agent t o an e p i d e m i o l o g i s t , means  something  e n t i r e l y d i f f e r e n t t o the l a y p u b l i c and some i n the medical p r o f e s s i o n , who  use the term t o d e s c r i b e f e b r i l e  t h a t seem t o "go around" AIDS i s s t r i c t l y  ( F a u c i , 1991;  illnesses  Gorund, 1993).  a d i s e a s e o f humans, and i t i s one o f  the most important d i s e a s e s t h a t a f f l i c t s humanity. I t s m a n i f e s t a t i o n s are so v a r i e d t h a t AIDS i s an epitome o f pathology, and i t s study i s one o f the i n t e r e s t s o f every branch o f medicine difficult for  (Mann, 1992b). I t i s s u r e l y the most  o f d i s e a s e s from the p o i n t o f view o f s o c i o l o g y ,  i t i s i n e x t r i c a b l y involved with s e x u a l i t y  (Herdt &  Lindenbaum, 1992). For example, AIDS Vancouver has to  r e a c h persons t h a t have sex w i t h o t h e r men,  attempted  but do not  i d e n t i f y as gay. T h i s r a i s e s an important i s s u e s u r r o u n d i n g r e s e a r c h . The s o c i a l p r a c t i c e s d e s c r i b e d must be grounded i n the s p e c i f i c d e t a i l s o f people's everyday  l i v e s , and y e t  they must i n c l u d e a t t e n t i o n t o the complex and  broader  c o n s t r a i n s a f f e c t i n g the behaviour t h a t p l a c e s people a t r i s k f o r HIV  infection.  Complex l e g a l , m e d i c a l , and e t h i c a l i s s u e s have been r a i s e d i n debates about the a p p r o p r i a t e p u b l i c h e a l t h and l e g i s l a t i v e responses t o AIDS. V a r i o u s c o n t r o v e r s i a l measures have been proposed by the M i n i s t r y o f H e a l t h , i n c l u d i n g mandatory t e s t i n g and q u a r a n t i n e . T h i s development was  c o n s i s t e n t w i t h the U n i t e d S t a t e s and A u s t r a l i a n  e x p e r i e n c e s (Altman,  1988;  Rayside & L i n g u i s t ,  1992).  Opponents o f such measures p o i n t e d out t h a t t h e i r measures would d r i v e persons a t r i s k o f i n f e c t i o n away from  sources  o f medical c a r e and  c o u n s e l l i n g and  argue t h a t c o e r c i o n  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 b e h a v i o r and  is  IV drug  use.  AIDS as D i s c o u r s e Non-neutral d i s c o u r s e question"  has  surrounded "the AIDS  s i n c e the e a r l i e s t days of t h i s h e a l t h  crisis.  Among the f a c t o r s c o n t r i b u t i n g t o the emergence o f neutral discourses  were, the sudden appearance o f AIDS on  the i n t e r n a t i o n a l h e a l t h scene, i t s r a p i d spread n a t i o n a l and  non-  across  s o c i a l boundaries, the d i v e r s i t y and  complexity  o f i t s e x t e r n a l symptoms, the absence o f e f f e c t i v e treatment s t r a t e g i e s , and AIDS and  segments of the n a t i o n a l p o p u l a t i o n  considered But was  the c l o s e a s s o c i a t i o n between o c c u r r e n c e o f  t o be,  already  i n some sense, " n o n - n e u t r a l " themselves.  also contributing to i t s non-neutrality,  the f a c t t h a t t h i s "new  disease"  of course,  d i d not have a name. As  a r e s u l t , "there arose a d i z z y i n g a r r a y o f acronyms, b e i n g bandied about as p o s s i b l e monikers f o r (the) epidemic, each c o n t r i b u t i n g i t s own  s u b t l e commentary on the medical  s o c i a l c o n d i t i o n s a t hand" ( S h i l t s , 1987,  p.  and  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 o f "who  i t h i t . " From  s e v e r a l p o i n t s o f view t h e r e were advantages t o be  gained  from "naming the unnamed" i n terms o f such r e f e r e n c e s . one  t h i n g , terms l i k e GRID,  Gay  Plague, and  the  For  like  e s t a b l i s h e d ownership of t h i s h e a l t h c o n d i t i o n as b e i n g persons who  were not a p a r t of the speakers' immediate  e x p e r i e n c e ; they made i t , i n o t h e r words, "somebody e l s e ' s h e a l t h problem," not t h e i r own.  That, i n t u r n ,  allowed  90 speakers  t o advance a s a t i s f y i n g , even i f somewhat  s e l f - s e r v i n g e x p l a n a t i o n , f o r the e x i s t e n c e o f AIDS: " s u s p i c i o u s people get s u s p i c i o u s d i s e a s e s . " L e a r n i n g t h a t t h i s "gay d i s e a s e " was among IV drug u s e r s and 1987,  a l s o showing up  p r o s t i t u t e s i n the p r o v i n c e  by  d i d not a l t e r the l o g i c o f t h i s argument. These were  a l s o " s u s p i c i o u s " p o p u l a t i o n s , from the p o i n t o f view of the s o c i e t y a t l a r g e , and t h a t made i t easy t o c o n s i d e r them as members o f the same "suspect c l a s s . " Reasons why  persons  w i t h hemophilia were a l s o among those a t r i s k were  obscured  under t h i s a n a l y s i s u n l e s s one simply assumed, as many d i d , t h a t a l l persons w i t h AIDS were homosexual The  persons.  ready-made appeal of these "whom i t h i t " l a b e l s  and the " c o m f o r t i n g " p o i n t o f view t h a t they brought t o  any  d i s c u s s i o n of the emerging h e a l t h 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 t h a t , f i r s t w i t h i n the  scientific  community and then, though l e s s r a p i d l y , throughout the s o c i e t y as a whole, the term AIDS became the l a b e l o f c h o i c e f o r t h i s d i s e a s e i n 1987  (Mann, 1992b). T h i s term  i m p l i e s t h a t members o f any p a r t i c u l a r group are i n h e r e n t l y " a t r i s k " and a speaker's  use o f t h i s term r e i n f o r c e s  v a l u e - l a d e n assumptions about the e x i s t e n c e o f the or the s o c i a l s t a t u s of those who  come i n c o n t a c t w i t h i t .  I t would be wrong, however, t o conclude AIDS g i v e s speakers  disease  t h a t the term  o f E n g l i s h a means f o r overcoming the  c o n d i t i o n s of "non^neutral  d i s c o u r s e " captured so  forcefully  by o t h e r , more s u b j e c t i v e , l a b e l s . I n i t i a l appearances t o the contrary>  AIDS c a r r i e s w i t h i t a p o i n t o f view s i m i l a r  91 to  t h e one j u s t d e s c r i b e d - an emphasis on t h e d i s t a n c e  s e p a r a t i n g t h e speaker from c o n d i t i o n s a t r i s k , and on t h e i r r e g u l a r nature o f t h e " a t r i s k " c o n d i t i o n i t s e l f ( D i c k i n s o n , 1995). The  e x p r e s s i o n , "AIDS," expresses  t h i s p o i n t o f view  i n s e v e r a l ways, i n c l u d i n g t h e combination  o f meanings  p r e s e n t e d by t h e words a c q u i r e d , immune, d e f i c i e n c y , and syndrome. of  Used by i t s e l f ,  f e a t u r e s otherwise  d e f i c i e n c y i d e n t i f i e s an absence  expected  t o be p r e s e n t i n a g i v e n  s i t u a t i o n . Deficiency also implies that the s i t u a t i o n d e s c r i b e d has been weakened o r disadvantaged,  being  i n some way,  by t h i s absence. Absent i n t h i s case i s t h e a b i l i t y t o s u c c e s s f u l l y r e s i s t c e r t a i n types o f d i s e a s e s to under o t h e r circumstances,  which,  human beings a r e t y p i c a l l y  immune. Immunodeficiency i s e s p e c i a l l y s e r i o u s , g i v e n t h a t it  i s not an i n h e r e n t c o n d i t i o n b u t has been i n t r o d u c e d  through c o n t a c t w i t h some e x t e r n a l source; t h a t i s , t h e immunodeficiency i s a c q u i r e d . The wording o f t h i s  label  does n o t make c l e a r why a c q u i s i t i o n has o c c u r r e d . However, it  i s c l e a r t h a t t h e a c q u i s i t i o n o f immune d e f i c i e n c y i s  not an i s o l a t e d event, but  i s something which occurs i n any  number o f c o n t e x t s t h e c o n d i t i o n i s d e s c r i b e d as a syndrome. Syndrome i s n o t a word commonly used d u r i n g E n g l i s h language c o n v e r s a t i o n s i n n o n t e c h n i c a l And  contexts.  u s u a l l y , when i t does occur, t h e c o n d i t i o n t h a t i t  i d e n t i f i e s has a l r e a d y been assigned l e s s - t h a n - d e s i r a b l e c h a r a c t e r i s t i c s . Syndrome i s an a p p r o p r i a t e element w i t h i n t h i s term i n both o f these  senses.  92 "Ordinary"  E n g l i s h , the language spoken o u t s i d e  s c i e n t i f i c , c l i n i c a l , o r academic domains, c o n t a i n s expressions  of few  made up of "sequences" of t h r e e o r more words  (Feldman, 1994). When e x p r e s s i o n s  of t h a t l e n g t h do  occur,  the meanings o f those e x p r e s s i o n s  always draw a t t e n t i o n t o  t h i n g s d i s t i n c t from the everyday e x p e r i e n c e s o f speakers and  l i s t e n e r s , t o t h i n g s which need t o be r e s p e c t e d  (or  feared) because o f the s p e c i a l q u a l i t i e s a s s o c i a t e d  with  them. E n g l i s h speakers d e s c r i b e d e t a i l s o f everyday e x p e r i e n c e i n terms t h a t are much l e s s complex i n s t r u c t u r e o r composition  (Smith, 1990). So whatever e l s e i s i m p l i e d  the meaning o f the three-word phrase, r e f e r e n c e t o acquired  We  an  immunodeficiency syndrome cannot be a r e f e r e n c e  an o r d i n a r y occurrence, measured" i n terms o f t h i s  by  to  criterion.  know t h a t " l e n g t h of c o n s t r u c t i o n " i s an i s s u e f o r  speakers o f E n g l i s h i n t h i s case (Feldman, 1994). Almost from the moment t h a t a c q u i r e d  immunodeficiency syndrome  became the term of c h o i c e i n E n g l i s h , speakers began t o rework i t i n t o the now,  f a m i l i a r a b b r e v i a t i o n : AIDS. Use  the a b b r e v i a t i o n c e r t a i n l y made the r e f e r e n c e considerably  l e s s cumbersome (Feldman, 1994;  of  process Herdt &  Lindenbaum, 1992). At the same time, r e f e r e n c e  by  a b b r e v i a t i o n e s t a b l i s h e s , through the f a c t o f shared l i n g u i s t i c s t r u c t u r e , p a r a l l e l s between the meaning o f AIDS and  the meanings o f other r e f e r e n c e s  abbreviations  i n English  s p e c i f i e d by  (Feldman, 1994). Those  references  i n c l u d e t h i n g s t h a t people h o l d i n h i g h p e r s o n a l example, P h . D . ( p a r t i c u l a r l y i f i t s p e c i f i e s one's  regard, own  for  93 achievement). In those cases, apply,  the p a r a l l e l s do not  and use o f an a b b r e v i a t i o n h i g h l i g h t s t h i s c o n t r a s t .  These p a r a l l e l s are much more a p p r o p r i a t e LSD,  properly  TB,  STD,  i n instances  where a b b r e v i a t i o n s s p e c i f y r e f e r e n c e s  like  to  t h i n g s which the Canadian p u b l i c does not v a l u e h i g h l y , t h i n g s w i t h which most Canadians  p r e f e r t o have as  little  a s s o c i a t i o n as p o s s i b l e . Reference t o AIDS v i a a b b r e v i a t i o n underscores s i m i l a r i t i e s w i t h the s o c i a l meanings common t o items i n the l a t t e r category,  j u s t as i t c o n t r a s t s w i t h  s o c i a l meanings i n the former one.  The  exchange o f  i n f o r m a t i o n d u r i n g d i s c u s s i o n s o f AIDS cannot h e l p but a f f e c t e d by both o f these messages. In 1984, did  encourage gay men  HIV/AIDS s t a t u s .  the  be  AIDS Vancouver  t o be e x p l i c i t about t h e i r h e a l t h  However, the statement, "I am  p o s i t i v e , " has been and o f t e n remains  and  HIV  too p e r s o n a l l y  scarey  and p o t e n t i a l l y s t i g m a t i z i n g t o r e v e a l . An a b b r e v i a t i o n , f o r example, may speaker t o remember, compared t o i t s counterpart;  and t h a t , i n t u r n , may  e a s i e r t o l e a r n . But circumstances, abbreviated in  be much e a s i e r f o r a unabbreviated  make the  i t becomes p o s s i b l e , under such  f o r a speaker of E n g l i s h to  form of  conversations,  abbreviation  master the  the " c o r r e c t " e x p r e s s i o n ,  and t o use i t  without being c o n s c i o u s l y aware of  f u l l d e t a i l o f the unabbreviated meaning t h a t the a b b r e v i a t i o n has In f a c t , i n more than a few  the  phrase o r the p r e c i s e subsumed (Feldman, 1994).  i n s t a n c e s , f o r example, PCB  p o l l u t a n t s found i n e l e c t r i c a l t r a n s f o r m e r s ) ,  PCP  h a l l u c i n o g e n commonly c a l l e d "angel d u s t " ) , and HIV  (the (the  (the  94 v i r a l agent which causes AIDS), most speakers (and l i s t e n e r s ) o f E n g l i s h would p r o b a b l y be hard-pressed t o make such i d e n t i f i c a t i o n s a c c u r a t e l y , were they asked t o do so. U n f a m i l i a r i t y w i t h such d e t a i l does not prevent people from u s i n g those a b b r e v i a t i o n s when the t o p i c s under  discussion  r e q u i r e i t . And by doing t h a t , speakers are u s i n g terms they may  not completely understand t o t a l k about t o p i c s 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 s t r a t e g y makes i t s own  contribution  t o the meaning expressed and exchanged i n such d i s c u s s i o n s ; t h a t s t r a t e g y becomes p a r t i c u l a r l y r e l e v a n t when the d i s c u s s i o n i n v o l v e s a t o p i c as d i s q u i e t i n g as AIDS. AIDS p r e v e n t i o n e d u c a t i o n programs i n B r i t i s h Columbia have been c l i n i c a l . No measurement s t u d i e s o r ethnographies have r e v e a l e d the e x t e n t o f both the misunderstanding and d i s a s s o c i a t i o n o f AIDS i n the p u b l i c . Whether the speaker uses h i g h l y s u b j e c t i v e and  emotion  l a d e n e x p r e s s i o n s l i k e Gay Plague o r GRID, o r words and phrases t h a t appear t o be more o b j e c t i v e s i g n i f i c a t i o n o f meaning, the n o n - n e u t r a l nature o f the d i s c o u r s e s u r r o u n d i n g AIDS i s p a r a l l e l e d by the n o n - n e u t r a l p o i n t o f view u n d e r l i e s the terminology o f t h a t d i s c o u r s e .  which  In o t h e r words,  r e g a r d l e s s o f the message t h a t the speaker i n t e n d s t o be communicating,  any d i s c u s s i o n o f AIDS u l t i m a t e l y becomes an  encounter, through language, w i t h the " i r r e g u l a r s t a t u s " o f t h i s h e a l t h c o n d i t i o n as w e l l as an encounter w i t h the u n c e r t a i n t y which accompanies  i t (Gorund,  1993). I t i s q u i t e  c l e a r t h a t some speakers o f E n g l i s h have no problem  working  95 i n terms o f such encounters and the meanings, e x p l i c i t i m p l i c i t , t h a t they c o n t a i n . And  and  i n some i n s t a n c e s , speakers  a c t i v e l y attempt t o maximize the occurrence o f such language-based of  AIDS encounters, and t o make f u l l e s t use out  the e f f e c t s those encounters have on the g i v e n  c o n v e r s a t i o n . In o t h e r cases, and,  I suspect, i n the  majority of instances within "ordinary English" c o n v e r s a t i o n , speakers o f  E n g l i s h adopt e x a c t l y t h e  o p p o s i t e s t a n c e . Instead o f maximizing  language  based  encounters w i t h AIDS, they t u r n t o one or more of the f o l l o w i n g s t r a t e g i e s t o f i n d ways t o minimize the occurrence of  such encounters, r e f o c u s i n g i n the p r o c e s s the meaning o f  the d i s c u s s i o n i n t o o t h e r , " s a f e r " domains. As the study progressed, i t became more apparent t o the author t h a t the outcome of events o c c u r r i n g i n the p r e s e n t have been s e t i n motion  l o n g ago i n an i n d i v i d u a l ' s  life  h i s t o r y . The p a t t e r n s o f b e h a v i o r e s t a b l i s h e d d u r i n g an i n d i v i d u a l ' s formative years, e s p e c i a l l y h i s / h e r learned responses t o a c r i s i s s i t u a t i o n , c o n d i t i o n t o a c o n s i d e r a b l e e x t e n t h i s / h e r f u t u r e response t o a l i f e - t h r e a t e n i n g  illness  such as AIDS. AIDS has c o n s i d e r a b l e i n f l u e n c e i n p r o d u c i n g changes i n an i n d i v i d u a l ' s network o f 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 w i t h the l a b e l s "gay plague" o r  "gay  cancer," i t s d i a g n o s i s can awaken dormant, o r exacerbate a c t i v e , f e e l i n g s and a t t i t u d e s o f homophobia as w e l l as d i s c r i m i n a t i o n w i t h i n the gay community - as evidenced i n Vancouver as e a r l y as 1983.  G u i l t i s everywhere an  initial  96 emotional response. The important p o i n t , however, i s t h a t s o c i o l o g y and psychology r e v e a l t h a t  different  individuals  have l e a r n e d d i f f e r e n t ways o f p r o c e s s i n g the g u i l t  (Herdt &  Lindenbaum, 1992). But i n each case the response appears t o conform t o the t r a d i t i o n a l , p a t t e r n e d way for that p a r t i c u l a r  o f h a n d l i n g stigma  individual.  These t e c h n i q u e s f o r managing stigma do not merely r e p r e s e n t a s e t o f responses stemming from AIDS as a d i s e a s e phenomenon (which c o u l d be s i n g l e d out and l a b e l e d as d i s e a s e - p h o b i a o r AIDS-phobia) . As I w i l l e x p l a i n below, "blaming the yicfelft" and "sham," two  system-maintaining  i d e o l o g i e s , frame s o c i a l r e l a t i o n s h i p s i n the f a c e of AIDS (Grover, 1992;  Gorund, 1993). The former i s an example o f  the s o c i a l c o n s t r u c t i o n o f 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 a s s o c i a t e d w i t h behaviour and identity. Each system-maintaining i d e o l o g y p r o v i d e s us w i t h a p a r t i a l b l u e p r i n t f o r networking s o c i a l t i e s employed by men.  gay  These i d e o l o g i e s , s i m u l t a n e o u s l y c o n s i d e r e d , permit  r e f l e c t i o n s upon the v a r i e d responses by gay men  t o 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 t h e s e i d e o l o g i e s , can be accounted f o r from r e c e n t and c u r r e n t i n t e r a c t i o n as w e l l as from a much e a r l i e r p e r i o d i n an i n d i v i d u a l ' s l i f e  history.  Homophobia I b e g i n w i t h a d i s c u s s i o n o f homophobia g e n e r a l l y , then move on  and  t o a c o n s i d e r a t i o n of the system-maintaining  i d e o l o g i e s . The g o a l i s t o p i n p o i n t more p r e c i s e l y the  97  c o n t r i b u t i o n each makes t o the p r e s e n t a t i o n o f s o c i a l r e l a t i o n s h i p s i n the f a c e o f AIDS. Homophobia r e f e r s t o the f e a r by h e t e r o s e x u a l s o f b e i n g i n c l o s e q u a r t e r s w i t h homosexuals; among gays themselves,  i t refers to  s e l f - l o a t h i n g . Homophobia a l s o i s a g e n e r a l c u l t u r a l phenomenon t h a t has been used t o e x p l a i n two  different  p a t h o l o g i e s . On the one hand, i t has been used psychologists "straights"  by  t o e x p l a i n a c u l t u r a l pathology among  ( i . e . , h e t e r o s e x u a l s ) , and,  on the o t h e r , i t has  been used by p s y c h o l o g i c a l o b s e r v e r s , a n a l y s t s , and c l i n i c i a n s as an e x p l a n a t i o n f o r a p a r t i c u l a r which  a f f e c t s the l i v e s of gay men  such as  pathology the e x p r e s s i o n  o f homophobic a t t i t u d e s by o t h e r s (Grover, 1992). Although as a p s y c h o l o g i c a l concept  i t r e f e r s t o the f e a r o f same  sex, i n the p r e s e n t context, the author f u r t h e r  identifies  i t as a p r o c e s s o f i n t e r n a l i z a t i o n . Every male, gay or s t r a i g h t , a f t e r a l l ,  has been r a i s e d  i n a household w i t h 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,  t o t h e i r b i a s e s and v a l u e s . Among these are those a s s o c i a t e d w i t h s e x u a l o r i e n t a t i o n . The dominant s o c i e t y ' s v a l u e s a t t i t u d e s toward homosexuals and homosexuality,  and  along with  o t h e r a t t i t u d e s t r a n s m i t t e d d u r i n g 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 o r i n t r o j e e t e d . The system m a i n t a i n i n g i d e o l o g i e s mentioned e a r l i e r channel those b i a s e s a s s o c i a t e d w i t h the s o c i a l i z a t i o n of homophobic a t t i t u d e s i n p a r t i c u l a r ways t h a t l i n k them t o c e r t a i n r e p r e s s i v e economic and  98  p o l i t i c a l b e h a v i o r s t h a t i n the popular media have eome t o be a s s o c i a t e d w i t h AIDS. When the source f o r a t t i t u d e s o f homophobia i s e x t e r n a l , a t the group l e v e l , the system maintaining ideology that malfunctions  from the p o i n t o f  view o f gay males i s "blaming the v i c t i m . " The  operation of  t h i s i d e o l o g y a l l o w s f o r the i n e q u i t y of s e x u a l gender  and  o r i e n t a t i o n as a p e r v a s i v e c h a r a c t e r i s t i c f o r major p o r t i o n s o f s o c i e t y t o remain unchecked. When the o r i g i n f o r the a t t i t u d e s o f homophobia i s i n t e r n a l l y d e r i v e d , a t the i n d i v i d u a l l e v e l , the system maintaining  i d e o l o g y i s "sham," the p r e f e r e n c e f o r t h e  p r o d u c t i o n o f a c o u n t e r f e i t s o c i e t y over one t h a t  recognizes  the d i v e r s i t y i n needs and b e h a v i o r s of a l l i t s c i t i z e n s . Only g r a d u a l l y does each gay male i n h i s growing-up y e a r s become aware, w i t h r e s p e c t t o h i s s e x u a l o r i e n t a t i o n , o f h i s b e i n g d i f f e r e n t , o f h i s separateness, own  f a m i l y and o t h e r s o c i a l groupings.  from members o f h i s "Sham" permits  i n d i v i d u a l t o p l a y out a charade of c o n f o r m i t y as a  this  process  o f managing h i s stigma. The gay male c h i l d o r a d o l e s c e n t i s allowed t o save f a c e by p r e t e n d i n g t o be t h a t which he i s not, a h e t e r o s e x u a l . In those i n s t a n c e s where he does not e x h i b i t the a p p r o p r i a t e behavior,  a sense of p e r s o n a l sham  can be imposed by members from these groups i n an e f f o r t t o b r i n g h i s outward behavior more i n t o alignment expected  with  the  i n t e r n a l norm.  Homophobia and System M a i n t a i n i n g I d e o l o g i e s In t h i s s e c t i o n , I wish t o p i n p o i n t the ways i n which these system m a i n t a i n i n g i d e o l o g i e s a r t i c u l a t e homophobic  99 a t t i t u d e s , both among h e t e r o s e x u a l s Homophobia thus prepares  and among gays.  t h e way i n which AIDS as a c u l t u r a l  phenomenon becomes embedded. A c c o r d i n g  t o Smith (1990), t h e  c r e a t i o n o f i d e o l o g i e s t h a t o f t e n perpetuate represents malfunctions  t h e s t a t u s quo  i n a c u l t u r e ' s s o c i a l and economic  s t r u c t u r e . The need f o r these i d e o l o g i e s , she c o n t i n u e s , i s g r e a t e r i n those s o c i e t i e s t h a t a r e s t r a t i f i e d  i n t o haves  and have-nots and whose r e s u l t i n g t e n s i o n r e p r e s e n t s a c h a l l e n g e t o t h e e s t a b l i s h e d o r d e r . In a p p l y i n g t h i s view o f s o c i a l i n e q u a l i t y and i n e q u i t y t o t h e gay community, an important  c o n t r a s t w i t h other s t i g m a t i z e d m i n o r i t i e s i s  brought i n t o sharp f o c u s . The d i s c r i m i n a t i o n a g a i n s t gays i s not always p r i m a r i l y o r d i r e c t l y economic. As a consequence of t h e i r chameleonlike  s t a t u s , many men can shed o r take on  a p u b l i c gay i d e n t i t y a t w i l l depending on t h e appropriateness  o f t h e p a r t i c u l a r c o n t e x t . The phenomenon o f  " p a s s i n g , " a process more i n tune w i t h white for black behavior  o f two g e n e r a t i o n s  expectations  ago, i s an a b i l i t y  gays possess t h a t i s e x t r a o r d i n a r i l y p e r v a s i v e . I t can be argued t h a t d i s c r i m i n a t i o n a g a i n s t gays i n Vancouver i s p r i m a r i l y p o l i t i c a l and r e f l e c t s t h e growing recognition, or a t l e a s t the perception, of t h e i r political The  greater  i n f l u e n c e as a r e s u l t o f i n c r e a s e d i n t e r n a l u n i t y .  f o r c e s b r i n g i n g about e x t e n s i v e i n t e r n a l  political  s o l i d a r i t y a r e t h e same f o r c e s t h a t a r e r e s p o n s i b l e f o r t h e t r a n s f o r m a t i o n o f gay men from t h e l a b e l o f s e x u a l "perverts" or "deviants" t o t h e i r i n c l u s i o n i n t o a minority  100 group, a s u b c u l t u r e . has  The media a t t e n t i o n s u r r o u n d i n g AIDS  added immeasurably t o t h i s p o l i t i c a l  visibility.  In t h e i r quest t o s e n s a t i o n a l i z e AIDS phenomena, t h e media has expanded i t s forum f o r both pro-gay and a n t i - g a y f o r c e s t o b r i n g t h e i r r e s p e c t i v e p o i n t s o f view t o t h e p u b l i c . The agenda f o r t h i s forum extends beyond AIDS and includes the p o l i t i c a l  presence o f gays i n t h e Vancouver  area. Blaming t h e V i c t i m ( s ) "Blaming t h e v i c t i m " depends on a p r o c e s s o f i d e n t i f i c a t i o n whereby t h e m a r g i n a l i z e d  and s t i g m a t i z e d  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 , o r i n other words as o u t s i d e r s and " a l i e n s . " S u c c e s s f u l i d e n t i f i c a t i o n on t h e p a r t s o f t h e r i s k groups w i t h of i n t e r n a l i z e d self-blame as c o n s e n t i n g  notions  r e q u i r e t h a t s o c i e t y c r e a t e them  to their social disinheritance. Aspiring  " v i c t i m " blamers a r e compelled t o s t r e s s t h a t PWAs t h i n k i n d i f f e r e n t forms and a c t i n d i f f e r e n t p a t t e r n s ,  cling t o  d i f f e r e n t " t r u t h s . " Both PWAs and a t r i s k groups a r e so d i f f e r e n t from an i m p l i e d " r e s t o f u s " i n s o c i e t y t h a t s t i g m a t i z a t i o n can become normalized and r a t i o n a l i z e d .  their This  masks t h e deeper p r o c e s s e s through which homophobia and f e a r of the disease  r e i n f o r c e i n e f f e c t u a l AIDS e d u c a t i o n . An  o p p o s i t i o n t o homophobia r e s u l t s i n a p y r r h i c v i c t o r y , i . e . unsafe sex p r a c t i c e s . As Smith (1990) d e c l a r e s and  i n her d i s c u s s i o n o f ideology  s e x u a l d i s c r i m i n a t i o n i n t h e contemporary s o c i e t y ,  "blaming t h e v i c t i m " h e l p s t o cover up t h e l i a b i l i t y o f t h e  101 c o n d i t i o n s o f i n e q u a l i t y and d i s c r i m i n a t i o n under which t h a t group l i v e s . With r e s p e c t t o the s i t u a t i o n i n v o l v i n g males i n Vancouver and was  elsewhere, m i s r e p r e s e n t a t i o n  of f a c t s  w i d e l y used as demagoguery i n the campaign f o r a  quarantine.  I t i s important t o r e c o g n i z e  gay  t h a t "blaming the  v i c t i m " c o n s i s t s , wherever and whenever i t occurs, of  gay  of a set  non-facts. V i c t i m blaming as an i d e o l o g y and  a discourse  discounts  the agency o f those blamed. In the next s e c t i o n , a t t e n t i o n w i l l be drawn t o the ways i n which AIDS Vancouver documents r e v e a l e d a two  way  i n t e r a c t i o n i n the gay  response t o v i c t i m - b l a m i n g  community i n which  took the form o f o p p o s i t i o n a l  p r a c t i c e s o f unsafe sex. As I w i l l show, such p r a c t i c e s are r e f e r r e d t o as "shamming" and  raise d i f f i c u l t  i m p l i c a t i o n s f o r the mainstream as w e l l as the  issues  and  gay  community. Shamming the V i c t i m ( s )  and  " V i c t i m s " Shamming Back  Some d i s c u s s i o n w i t h i n AIDS Vancouver i n d i c a t e d t h a t some members were aware t h a t an i d e o l o g y of v i c t i m blaming was  inadeguate t o e x p l a i n how  and why  t a k i n g p l a c e d e s p i t e AIDS p r e v e n t i o n example, C h r i s t o p h e r "there men  unsafe p r a c t i c e s were education  For  Koth i n Contact (1990) wrote t h a t  i s a need f o r on-going education  because the fundamentals o f sexual  ignored"  efforts.  and  support f o r  s a f e t y are  (p. 7 ) . Furthermore, "a l a r g e p r o p o r t i o n  gay  being of  i n d i v i d u a l s became i n f e c t e d d u r i n g t h e i r adolescence which can  i n d i c a t e t h a t are i n d e n i a l about t h e i r s e x u a l i t y "  (p.3). Minutes from an A p r i l 1991  board meeting r e v e a l t h a t  102 some board members expressed concern t h a t many people were c o n c e a l i n g t h e i r HIV s t a t u s and t h e i r  gayness.  "Sham" i s a combination o f concealment I t may  and p r e t e n s e .  be aimed a t r e f u s i n g the stigma o f homophobia and  c o n s e r v a t i v e moralism, but u l t i m a t e l y i t may result  also i r o n i c a l l y  i n unsafe and s e x u a l p r a c t i c e s . S o c i a l l i f e and good  manners compel d e c e p t i o n f o r even the most t r u l y innocent and w e l l - i n t e n t i o n e d among us. What was document o f AIDS Vancouver was  s t a t e d i n the  a l s o echoed by gay  activist  r e s e a r c h e r s . A c c o r d i n g t o Feldman (1992), "engineered by f e a r , sham i s a b r i d g e between the u n d e s i r a b l e and the necessary, making the u n d e s i r a b l e u s e f u l and the n e c e s s a r y b e a r a b l e " (p. 99 ). He c o n t i n u e s , "he r e a l problem  i s not  whether t o be a sham, but t o understand when t o drop the mask and when t o put i t on"  (p. 99).  While stigma management i s a g e n e r a l f e a t u r e o f s o c i e t y and a p r o c e s s t h a t o c c u r s wherever t h e r e are i d e n t i t y norms t o be e s t a b l i s h e d . I see shamming as a form o f 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 c h i l d h o o d s among " s t r a i g h t s " compulsary  learning  h e t e r o s e x u a l s o c i a l s k i l l s e n a b l i n g them t o h i d e  t h e i r gay i d e n t i t i e s . Many such youth e x p e r i e n c e the c u l t u r e ' s r i t u a l s o f c o u r t s h i p , d a t i n g , and even mating w i t h clammy hands, f e i g n e d excitement, c o u n t e r f e i t  enthusiasm,  and c o n c e a l e d a n x i e t y . They p l a y out the sham o f h e t e r o s e x u a l b e h a v i o r , thereby hoping t o a l l a y  any  s u s p i c i o n s about t h e i r t r u e d e s i r e s . And t r u e t o the s t r u c t u r e o f "gay sham," w h i l e they c o n c e a l the most  103 important t r u t h s about themselves  from those most c l o s e l y  r e l a t e d t o them, they engage i n a c t i v i t i e s o f the most i n t i m a t e k i n d w i t h the males they met  o n l y moments b e f o r e  and many times w i l l never see a g a i n . These i n d i v i d u a l s , then, have l e a r n e d a s u c c e s s f u l l y "sham," o f t e n a t u n t o l d p e r s o n a l expense. Some e v e n t u a l l y come t o  compartmentalize  t h e i r l i v e s i n t o p u b l i c and p e r s o n a l , and t o d i s a l l o w them from b e i n g i n t e r t w i n e d . Concealment becomes a s e l f - p r o t e c t i v e and i n j u r i o u s s t r a t e g y . T h e i r i n t e r n a l i z a t i o n of homophobia enables t h e i r consent t o deny t h e i r homosexuality  i n p u b l i c i n o r d e r t o i n t e r a c t o r get by  i n the s t r a i g h t world. With the ascendance o f c o n s e r v a t i v e p u b l i c r h e t o r i c  on  n u c l e a r f a m i l i a l i s m i s h a r d l y d i s a p p e a r i n g , homophobia i n s o c i e t y appears t o be a common phenomenon. I t l e n d s  itself  most s i g n i f i c a n t l y t o the c r e a t i o n o f the g h e t t o - l i k e s t a t u s o f gay neighborhoods  i n the advanced i n d u s t r i a l world.  And  i n t h i s r e s p e c t , i t has a d i r e c t r o l e i n s e t t i n g the stage f o r AIDS. Gays as a s u b e u l t u r a l grouping are marked o f f and sometimes g e o g r a p h i c a l l y cordoned o f f from the l a r g e r s o c i e t y by v i r t u e of t h e i r sexual o r i e n t a t i o n . As a consequence, s e x u a l l y o r i e n t e d b u s i n e s s e s c a t e r i n g t o gay s o c i a l a c t i v i t i e s , gay baths, bookstores, l e a t h e r boutiques, and pornographic t h e a t e r s are c o n c e n t r a t e d predominantly i n these areas o f the c i t y o f f e r i n g gay men  easy access t o  f r e q u e n t , anonymous, and impersonal sex, o f t e n times  next  door o r down the s t r e e t . T h i s can be a b a r r i e r t o s u c c e s s f u l AIDS p r e v e n t i o n e d u c a t i o n compaigns.  104  Summary: A study o f s e x u a l l y t r a n s m i t t e d d i s e a s e r e v e a l s the complex i n t e r p l a y between c u l t u r a l and p o l i t i c a l  factors in  s o c i e t y ' s response t o d i s e a s e s . AIDS i s becoming i n c r e a s i n g l y p o l i t i c i z e d , and manipulated The  f e a r o f the d i s e a s e can  be  t o j u s t i f y v a r i o u s p o l t i c a l and s o c i a l agendas.  advocates o f 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 u n i n t e r e s t e d  i n the c o m p l e x i t i e s o f i n d i v i d u a l m o t i v a t i o n o r the r o l e o f c u l t u r a l c o n d i t i o n i n g i n the shaping o f behaviour.  They seem  t o assume an u n i f o r m l y h i g h degree o f autonomous i n d i v i d u a l c o n t r o l over one's l i f e circumstances,  denying  the  relevance  o f gender, s o c i a l c l a s s , or race, and s e x u a l 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 c h o i c e . I f t h i s  i d e o l o g i c a l t r e n d c o n t i n u e s t o g a i n credence,  AIDS  p r e v e n t i o n educators w i l l not have the power t o 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 o f  d i s c o u r s e a n a l y s i s and aimed not t o t r a c e c a u s a l i n f l u e n c e s among AIDS p r e v e n t i o n e d u c a t i o n programs i n Vancouver between 1983-1994, nor d i d i t adhere t o s t r i c t p r i n c i p l e s . Rather  i t attempted t o r e v e a l who  power t o c o n s t r u c t , d e l i v e r , and  historical has had  the  implement AIDS p r e v e n t i o n  e d u c a t i o n . In o r d e r t o do t h i s , AIDS Vancouver's p o l i c y documents and n e w s l e t t e r s were u t i l i z e d . These d i s c o u r s e s r e p r e s e n t e d important  s i t e s of p u b l i c d i s c o u r s e around AIDS  p r e v e n t i o n e d u c a t i o n . The study a l s o i n c l u d e d data from p e r s o n a l j o u r n a l s o f those t h a t have been i n v o l v e d i n the development o f AIDS p r e v e n t i o n e d u c a t i o n . These documents r e p r e s e n t e d the d i s c o u r s e f o r the development, implementation,  and e v a l u a t i o n o f c u r r i c u l u m and  i n s t r u c t i o n i n the community around AIDS p r e v e n t i o n e d u c a t i o n . The documents were u s e f u l i n many ways. I t  was  p o s s i b l e t o 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 r e v e a l how o r g a n i z a t i o n d e a l t w i t h homophobia, sexism,  the  and r a c i s m .  address these i s s u e s , I m a i n t a i n t h a t i t would be t o i n t e r v i e w i n d i v i d u a l s i n o r d e r t o understand  To  necessary  these  i s s u e s i n the context of AIDS. In a d d i t i o n , f a i l u r e t o i n c o r p o r a t e c u l t u r e as a b a s i c u n d e r l y i n g e p i s t e m i o l o g i c a l p r i n c i p l e can o n l y y i e l d s h o r t - s i g h t e d f i n d i n g s . E x p l i c a t i n g r e l e v a n t c u l t u r a l f a c t o r s , i s s u e s , and  106  e x p e r i e n c e s i s a time consuming p r o c e s s . However, without considering overall  c u l t u r e , the r e s e a r c h  w i l l be reduced i n i t s  effectiveness.  Based on the evidence presented here, h i s t o r y p l a y e d two  has  q u i t e d i s t i n c t r o l e s i n the AIDS s t o r y .  I n i t i a l l y , AIDS was i n t e r e s t s and  a "new"  p o l i c y area where  p o l i c y l i n e s had  established  not y e t 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 c o u l d p l a y a p r a c t i c a l r a t h e r than a symbolic r o l e . How  f a r t h a t r o l e was  justified is a  d i f f e r e n t matter. For what l a y behind t h i s form of h i s t o r i c a l i n t e r v e n t i o n was t h e r e was learned,  a conservative  assumption t h a t  indeed a " l e s s o n of h i s t o r y " t h a t c o u l d  be  t h a t the p a s t c o u l d be used t o p r o v i d e a v e r y  s p e c i f i c b l u e p r i n t f o r a present-day p o l i c y r e a c t i o n . I t implied  too t h a t h i s t o r y was  incontrovertible " f a c t " rather  than a mass o f d i f f e r i n g i n t e r p r e t a t i o n s themselves h i s t o r i c a l l y constructed. evidence was  The  b e l i e f that  some h i g h e r form o f t r u t h was  historical certainly 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, But the  i n the  1960s (but not  i n the  1980s), f o r drugs.  form o f h i s t o r i c a l r e l e v a n c e adopted was  equivocal  i n i t s b e n e f i t s from the v i e w p o i n t of  more 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 o f i t s s u b t l e r s t r e n g t h s i n f a v o r of a focus on h i s t o r i c a l f a c t  and  messages t h a t many h i s t o r i a n s would f i n d p r o b l e m a t i c . Were historians  (along w i t h o t h e r s o c i a l s c i e n t i s t s ) r e l a p s i n g  i n t o p o s i t i v i s m v i a AIDS?  107  T h i s does not mean t h a t h i s t o r y has no r o l e t o p l a y i n the f u t u r e a n a l y s i s o f AIDS p r e v e n t i o n  e d u c a t i o n . 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 o f o t h e r forms o f h i s t o r i c a l i n p u t , which a l s o have r e l e v a n c e  t o t h e development o f t h e r o l e o f  h i s t o r y more g e n e r a l l y i n t h e study o f h e a l t h p o l i c y . H i s t o r y as background i s important. H i s t o r i a n s can produce the necessary h i s t o r i c a l p e r s p e c t i v e .  But h i s t o r i c a l  skills  can a l s o be a p p l i e d t o p r o v i d e a c r i t i c a l a n a l y s i s o f almost c u r r e n t developments. Can t h i s type o f work bear a r e l a t i o n t o p o l i c y ? H i s t o r y here t o o can be " p o l i c y r e l e v a n t , " although l e s s d i r e c t l y than i n t h e e a r l i e r " l e s s o n o f h i s t o r y " approach. H i s t o r y can p r o v i d e some o f t h e key t o o l s f o r an o v e r a l l a n a l y s i s o f a p a r t i c u l a r s i t u a t i o n and can demonstrate how i n t e r e s t s and s t r a t e g i e s , a l l i a n c e s and power s t r u g g l e s , w i t h i n policymaking can s h i f t over time. The  p o i n t here i s not t h e " l e s s o n o f h i s t o r y " d e r i v e d  from  c h o l e r a , plague, o r t h e B l a c k Death but a s u b t l e r a n a l y s i s o f t h e nature and determinants o f AIDS p o l i c y m a k i n g .  This  f u n c t i o n f o r t h e h i s t o r y o f h e a l t h p o l i c y i s , i t s h o u l d be noted, more p r o b l e m a t i c i n  Canada than i n t h e U n i t e d  S t a t e s ; policymakers i n t h e former remain t o be convinced. What a r e t h e p a r t i c u l a r t o o l s t h a t h i s t o r y can p r o v i d e ? These a r e t h r e e f o l d : i t s use o f a c h r o n o l o g i c a l  approach; a  sense o f c o n t i n u i t y as w e l l as o f change; and, w i t h i n an o v e r a l l chronology, t h e a b i l i t y t o 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 o f i n t 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 w e l f a r e terms f o r o t h e r p o l i c y areas, has a l s o c r y s t a l l i z e d some o f t h e debates w i t h i n t h e h i s t o r i c a l p r o f e s s i o n over t h e p a s t decade. H i s t o r i c a l r e l e v a n c e i s one; so t o o a r e t h e debates around chronology.  Chronology may not be e v e r y t h i n g , and h i s t o r i a n s  have now shown t h a t much fundamental work i n h i s t o r y cannot be done w i t h a p u r e l y c h r o n o l o g i c a l approach.  Nonetheless,  h i s t o r y , more than any o t h e r s o c i a l s c i e n c e , knows how t o study t h e passage o f time. Another p o t e n t i a l s t r e n g t h (and weakness too) l i e s i n t h e h i s t o r i a n ' s i n t e r e s t i n change and c o n t i n u i t y , i n an i m p l i c i t c y n i c i s m about p r o c l a i m e d new d e p a r t u r e s  radical  i n policy. A h i s t o r i c a l strength l i e s i n  l o c a t i n g p o l i c y change i n p a s t p r a c t i c e , i n s e e k i n g out antecedents  and p r e e x i s t i n g t e n d e n c i e s t h a t feed i n t o p o l i c y  development. A t i t s worst, t h i s can be an o b s e s s i v e d e s i r e to  deny any p o s s i b i l i t y o f r e a l change o r t h e r e l e v a n c e o f  i n 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, a t i t s b e s t , i t p r o v i d e s a powerful means o f s e t t i n g p o l i c y development i n i t s proper c o n t e x t . In t h e AIDS area, f o r example, p o l i c i e s on r e s e a r c h , o r i l l e g a l drugs,  "new"  can o n l y be assessed  i n t h e l i g h t o f p r e v i o u s t e n d e n c i e s and p o l i c y o b j e c t i v e s . One b a s i c h i s t o r i c a l q u e s t i o n i s how f a r AIDS brought about p o l i c y change and how f a r such change was dependent on p r e e x i s t i n g i n t e r e s t s and t e n s i o n s . The  f i n a l s t r e n g t h o f t h e h i s t o r i c a l approach l i e s i n  an area i n which, t o observers from o t h e r d i s c i p l i n e s ,  i t is  o f t e n c o n s i d e r e d weak. T h i s i s t h e presumed a t h e o r e t i c i t y o f  109  the s u b j e c t . Some h i s t o r i c a l work i s indeed a t h e o r e t i c a l  and  t o t a l l y e m p i r i c a l 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 r a t h e r than d e v o i d o f i n t e l l e c t u a l c o n t e x t . The borrowing  broader  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 a l s o 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 w i t h s o c i o l o g i c a l H e r e i n l i e s a s t r e n g t h (and weakness) o f h i s t o r y .  concerns. The  h i s t o r i c a l approach i s unique i n i t s g e n e r a l i z i n g a b i l i t y t o d e a l w i t h a range o f primary source m a t e r i a l b e a r i n g on  the  i n t e r p l a y of p o l i c y i n t e r e s t s and the development o f c u l t u r a l c o n s t r u c t s and t o interweave  t h a t complex s t o r y  with l e v e l s of t h e o r e t i c a l explanation a l l w i t h i n a framework t h a t takes account  of the passage o f time.  a n a l y s i s o f the s o c i a l and p o l i c y impact  o f AIDS and  o t h e r i s s u e s of h e a l t h and d i s e a s e remains an  The of  essentially  c r o s s - d i s c i p l i n a r y q u e s t i o n i n which h i s t o r y has a v i t a l r o l e t o p l a y ; f o r the v a l u e o f such c o l l a b o r a t i o n l i e s  not  i n a b l u r r i n g o f 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 o f p e r c e p t i o n s and a g r e a t e r awareness of the nature of the  boundaries.  I m p l i c a t i o n s o f the Research Most AIDS p r e v e n t i o n e d u c a t i o n programs focus too much on i n d i v i d u a l behaviour political  and too l i t t l e on the s o c i a l  f a c t o r s t h a t shape behaviour.  i n c i d e n c e o f HIV,  and  To reduce the  AIDS e d u c a t i o n programs need t o h e l p  people change t h e i r s e x u a l and drug h a b i t s . But and drug use are complicated behaviours,  sexuality  deeply r o o t e d 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 t o change the behaviour without changing the environment i n which t h a t behaviour occurs what we  know about h e a l t h education.  social  i g n o r e s much o f  I t also reinforces a  tendency a l l too common i n p u b l i c h e a l t h programs t o blame the v i c t i m s o f d i s e a s e r a t h e r than the p e r p e t r a t o r s o f s o c i a l conditions that create  the  illness.  AIDS programs l a c k a comprehensive approach t o prevention  and treatment. Few  prevention  and treatment. In r e a l i t y the two  inseparably  AIDS s e r v i c e s i n t e g r a t e are  i n t e r t w i n e d . Support groups f o r H I V - p o s i t i v e  people h e l p them t o i n i t i a t e and m a i n t a i n  the behaviour  changes t h a t w i l l prevent them from i n f e c t i n g o t h e r s . too o f t e n p r e v e n t i o n  But  and treatment compete f o r l i m i t e d  resources. E q u a l l y important are methodological t h a t emerge from t h i s a n a l y s i s of AIDS education. education  The  considerations  prevention  t h e o r e t i c a l models used f o r AIDS  need t o i n c o r p o r a t e c u l t u r e and  prevention  communication  more e x p l i c i t l y . Work must be done t o d e f i n e which components of the models are c u l t u r a l l y i n f l u e n c e d . c u l t u r a l connection  must be more v i s i b l e i n  The  conceptual  d i s c u s s i o n s and the r e p o r t s o f s t u d i e s t h a t emanate from the models. Many extant s t u d i e s do not i n c l u d e d i s c u s s i o n s o f r e s e a r c h t h a t might have informed d e c i s i o n s made i n the developing  s t r a t e g i e s f o r use w i t h v a r i o u s  populations.  targeted  I t i s not c l e a r whether supplementary  Ill  d e s c r i p t i v e r e s e a r c h was  done, o r even i f such r e s e a r c h  p e r c e i v e d as necessary. Although may  was  such f o r m a t i v e r e s e a r c h  not be p a r t i c u l a r l y expedient,  i t i s nonetheless  v a l u a b l e . T h i s suggests a need f o r a sharper focus on c u l t u r e t o i n c r e a s e the power of the conceptual models. Such a focus r e q u i r e s an a l t e r e d mindset, p a r t i c u l a r l y on the p a r t o f r e s e a r c h e r s . We  no l o n g e r have the l u x u r y o f  d e s i g n i n g s t u d i e s t h a t f a i l t o account d i v e r s i t y t h a t c h a r a c t e r i z e s today's  f o r the  cultural  s o c i e t y . I t has been  argued i n t h i s study t h a t c u l t u r e i s a system of meanings and p r a c t i c e s t h a t a f f e c t the i n d i v i d u a l ' s a t t i t u d e s and b e h a v i o u r s . T h i s i m p l i e s a s h i f t from the simple p u r s u i t o f v a r i a b l e s t o more encompassing p r o c e s s o f r e s e a r c h . U n t i l r e c e n t l y , the gay bars and o t h e r o f f e r i n g entertainment  establishments  g l o r i f i e d the " f a s t - l a n e " f a n t a s i e s  so o f t e n c o n s i d e r e d by many o u t s i d e r s t o be synonymous w i t h the gay l i f e - s t y l e . Youth, sex, drugs, p a r t i e s , l e a t h e r , and t o a l e s s e r extent, sado-masochistic  p r a c t i v e s were h e l d up  by the gay male as v a l u e d and worthy o f b e i n g sought a f t e r . P u b l i c a t i o n s , p o s t e r s , and s i g n s p a i d ample testimony t o the superiur status of t h i s fast-lane, multiple-partnered, anonymous s e x u a l l i f e - s t y l e as the normal way a way  of l i v i n g  gay,  t o u t e d f o r i t s a t y p i c a l l y non-Western, unabashed  d e v o t i o n t o p l e a s e . Gay  are s e l f r i g h t e o u s l y a c c a l i m e d f o r  having broken the s h a c k l e s o f the p u r i t a n i c a l ,  heterosexual  l i f e s t y l e where sexual d e s i r e i s met w i t h "measured d e n i a l " (Weeks, 1986). The p o i n t i s t h a t the p r e v a l e n c e o f t h i s  112  a t t i t u d e d e r i v e s from the n e a r l y u n i v e r s a l presence homophobia i n t h i s c u l t u r e . Some gay accepts t h i s  of  self-  i n d u l g e n t p r e s e n t a t i o n o f l i f e ; o t h e r s do not. Those who  do  r e p r e s e n t t h e former group are most s e r i o u s l y a t - r i s k f o r c o n t r a c t i n g AIDS. Doing AIDS r e s e a r c h i s c r i s i s - d r i v e n . A l l those i n v o l v e d i n t h i s endeavor are r e a c t i n g w i t h a sense o f urgency t o an immediate need. With taboo i s s u e s t h a t o f t e n surround p e r c e p t i o n s o f AIDS, the emotional  and moral  s t a k e s might be h i g h e r . T h i s makes the r e s e a r c h d i f f e r e n t from r e s e a r c h on o t h e r h e a l t h - r e l a t e d i s s u e s because o f the impact  on an e n t i r e community.  Recommendations: AIDS p r e v e n t i o n e d u c a t i o n should be seen as a c u l t u r a l communication p r o c e s s . I t i s a p p r o p r i a t e t o  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 r e s e a r c h . I hope t o i d e n t i f y the l i n e s o f r e s e a r c h and methodological  the  s h i f t s necessary t o i n c o r p o r a t e a c u l t u r a l  p e r s p e c t i v e . From the p e r s p e c t i v e o f a r e s e a r c h e r , I have selected t o p i c s that I f e e l researchers could best My  address.  i n t e n t i o n here i s t o i d e n t i f y o p t i o n s f o r r e s e a r c h and  p r i o r i t i z e t h e i r r e l a t i v e importance.  to  I d e n t i f y i n g some  s h o u l d h e l p communities and a l l i e s t o s e t the terms o f debate and the f i g h t f o r r e s o u r c e s , e t c . i n the f u t u r e . Numerous avenues are a v a i l a b l e f o r f u r t h e r e x p l o r a t i o n o f the ways i n which c u l t u r e i s embedded i n the  HIV  e d u c a t i o n a l p r o c e s s . C u l t u r e can be i n c l u d e d i n the  113  c o n s i d e r a t i o n of the d e s t i n a t i o n , source, message, channel, and r e c e i v e r v a r i a b l e s i n the c r e a t i o n of h e a l t h  promotion  messages. Choosing the d e s t i n a t i o n i m p l i e s a s k i n g whether a message s h o u l d be designed t o impact knowledge, a t t i t u d e s , or  a c t i o n ; whether a message should be processed  immediately  or  i n the f u t u r e , and whether i t should be designed t o cause  change o r cause r e s i s t a n c e t o change. Although the same f a c t u a l i n f o r m a t i o n can be found i n v a r i o u s forms, the  two  b a s i c AIDS p r e v e n t i o n messages a r e : a v o i d s h a r i n g needles, and do not have unprotected sex. The t a r g e t audience must be w e l l understood  t o know which messages w i l l be a p p r o p r i a t e  i n which s e t t i n g s . AIDS p r e v e n t i o n messages and programs t y p i c a l l y  focus  on s k i l l s and/or a t t i t u d e s . Both f o c i can be e n r i c h e d by a t t e n t i o n t o c u l t u r e . Although communication s k i l l s are o f t e n presumed t o be g e n e r a l i z a b l e a c r o s s d i f f e r e n t  groups,  one r e s e a r c h avenue t o pursue i s whether some s k i l l s are more c r u c i a l o r more a p p r o p r i a t e f o r d i f f e r e n t  cultural  groups. Research might a l s o i n v e s t i g a t e what counts as the necessary s o c i a l support, s t r a t e g i e s t o r e g u l a t e one's behaviour, and m o t i v a t i o n s t o c o n t i n u e new  behaviours f o r  people i n v a r i o u s c u l t u r a l c o n t e x t s . H e a l t h promotion  advocates  r e a l i z e t h a t 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 a l s o occur. A t t i t u d e s toward behaviours t h a t may  be p l e a s u r a b l e , but i n v o l v e h i g h l e v e l s  114  o f r i s k , must be a l t e r e d , as must p e r c e i v e d norms among r e f e r e n t groups and  f e a r from myths and misconceptions  AIDS. C o r r e c t i n g m i s i n f o r m a t i o n  is particularly  about  important  f o r t h e b r o a d l y conceived g e n e r a l p u b l i c . Centered death,  on the b o d i l y experiences  of i l l n e s s  and  the s o c i a l meaning o f the h i s t o r y o f AIDS p r e v e n t i o n  e d u c a t i o n i n t i m a t e l y touches upon our i d e a s about s e x u a l i t y 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 i n d i v i d u a l p r i v a c y , o r d e r and h e a l t h and the p r o s p e c t of  and  i n s t a b i l i t y , and above a l l ,  happiness.  Understanding  respond t o AIDS as an epidemic i s consequently  how  we  important  not o n l y f o r what i t r e v e a l s about the ways i n which h e a l t h p o l i c y i s c r e a t e d , but a l s o f o r what i t i m p l i e s about our a b i l i t y t o meet the c h a l l e n g e of f u t u r e emerging d i s e a s e s and l o n g s t a n d i n g p u b l i c h e a l t h problems. Not o n l y i s d i s e a s e p r e v e n t i o n t r a n s l a t e d i n t o  the  realm o f i n d i v i d u a l e f f o r t , but the o n l y a c t i o n s t y p i c a l l y c o n s i d e r e d are those t h a t can be implemented by s o l o i n d i v i d u a l s . L i t t l e a t t e n t i o n i s accorded  to possible  d i s e a s e p r e v e n t i o n s t r a t e g i e s t o be used between persons w i t h 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 o c c u p a t i o n a l hazards.  This orientation r e f l e c t s  the  dominant view of i n d i v i d u a l s as i s o l a t e d atoms, r a t h e r than as persons who  n e c e s s a r i l y are c a r r i e r s o f the  social  r e l a t i o n s of c l a s s , race, and gender t h a t permeate the s o c i e t y of which they are a p a r t . Intended o r not,  115  a t t i t u d e s toward the c a u s a t i o n and p r e v e n t i o n o f now  a f f e c t our t h i n k i n g about AIDS and, i f not addressed,  t h r e a t e n t o v i t i a t e our s t i l l HIV  diseases  inadequate response t o the  epidemic. The overwhelmingly  i n d i v i d u a l i s t i c biomedical  o r i e n t a t i o n o f the i n f e c t i o u s and c h r o n i c d i s e a s e models and t h e i r t y p i c a l d i s r e g a r d f o r the p a r t i c u l a r h e a l t h s t a t u s o f r a c i a l / e t h n i c m i n o r i t i e s i n the Canada a l s o has d i s t o r t e d our understanding o f the f u l l epidemiology and r e a l i t y o f AIDS. Much o f the e a r l y w r i t i n g about AIDS, f o r example, i g n o r e d i t s p r e v a l e n c e and unique  characteristics  among people o f c o l o r . P a t t e r n s o f homosexuality h e t e r o s e x u a l i t y are  and  not, however, c u l t u r a l g i v e n s ; they  have d i f f e r e n t s o c i a l c o n s t r u c t i o n s w i t h i n white and m i n o r i t y e t h n i c communities,  and these d i f f e r e n c e s need t o  be understood and a p p r o p r i a t e l y addressed. Given the m u l t i p l e s o c i a l and economic d i f f i c u l t i e s t h a t many o f these communities  f a c e , the s p e c i f i c problems  o f AIDS need  t o be approached w i t h i n an understanding o f the i s s u e s o f employment, e d u c a t i o n , housing, economic development, the s t r u g g l e s a g a i n s t the drugs t h a t are f l o o d i n g c i t y communities.  and  inner  Needle exchange programs, f o r example,  should be a l l i e d w i t h drug treatment programs and o t h e r a l t e r n a t i v e i n i t i a t i v e s t h a t o f f e r some hope f o r an a l t e r n a t i v e t o long-term drug dependence. Most o f the i s s u e s t h a t are c r i t i c a l  f o r people w i t h AIDS, such as  116  housing these  and h e a l t h care, a r e widespread problems throughout  communities. The e p i d e m i o l o g i c a l c a t e g o r i e s o f " r i s k groups" t h a t  are f i r m l y embedded i n b i o d e t e r m i n i s t i c models a l s o tend t o mask t h e c l a s s b a s i s o f many h e a l t h i s s u e s . T h e r e f o r e , i t i s necessary  t o problematize  " a t r i s k . " AIDS and  H I V - r e l a t e d d i s e a s e s a r e no e x c e p t i o n . O f f i c i a l AIDS statistics,  f o r example, r e p o r t cases c l a s s i f i e d by age,  gender, r a c e / e t h n i c i t y , and mode o f t r a n s m i s s i o n and do n o t p r o v i d e any i n f o r m a t i o n on poverty o r s o c i a l c l a s s . The invisibility  o f c l a s s i n t h e o f f i c i a l data m i r r o r s t h e  invisibility  o f c l a s s i n p u b l i c understanding  and p u b l i c  p o l i c y . As educators move away from t h i n k i n g s o l e l y i n emergency terms and i n terms o f s t a t i c ,  individualistic  " r i s k groups," w i t h t h e h e a l t h e x p e r t s i n charge  of  s t r a t e g i c p l a n n i n g f o r AIDS, i t should be p o s s i b l e t o develop more c o a l i t i o n - b a s e d p l a n n i n g and p o l i c y making by i n v o l v i n g unions, organizations.  communityabased, m i n o r i t y , and gay  Other important  r e s e a r c h areas t h a t need t o  be e x p l o r e d a r e women and AIDS and AIDS i n p o p u l a r s o c i e t y and media. The former i s p a r t i c u l a r l y important  because  t h e r e was v e r y l i t t l e a t t e n t i o n g i v e n t o women and AIDS i n the h i s t o r y o f AIDS i n Vancouver. few c l i n i c a l  Secondly,  there are very  s t u d i e s r e s e a r c h i n g d i s e a s e e t i o l o g y o f AIDS  i n women. In t h i s second decade o f AIDS, educators have t h e o p p o r t u n i t y t o l e a r n from t h e f i r s t decade, from t h e unique  117  h i s t o r y o f AIDS i t s e l f ,  and no l o n g e r need t o r e l y upon  p r i o r and not n e c e s s a r i l y a p p r o p r i a t e models. In s e e k i n g a more u n i f i e d c o n c e p t i o n o f AIDS, educators need t o r e t a i n the s t r e n g t h s of both e a r l i e r models and use each t o counterbalance  the weakness o f the o t h e r . I f educators  b e g i n t h i s p r o c e s s w i t h AIDS, i t may  a l s o open  can  new  p o s s i b i l i t i e s f o r d e a l i n g with other conditions that  may  have been too narrowly boxed i n t o e i t h e r the i n f e c t i o u s o r c h r o n i c d i s e a s e model. In c o n c l u s i o n , the f i n d i n g s o f t h i s study suggest  that  p r e s e n t e d u c a t i o n g u i d e l i n e s are unable t o i d e n t i f y what message s h o u l d be communicated and f a i l t o i d e n t i f y t o whom they should be conveyed. T h i s study does not recommend the use o f b i o d e t e r m i n i s t i c models of d i s e a s e p r e v e n t i o n which r e f l e c t plague metaphors. Furthermore, commonsense medical p r e s c r i p t i o n s are so f a m i l i a r t h a t we do not look f o r the deeper "meanings" u n d e r l y i n g them. There i s an urgent need t o c o n s i d e r s e x u a l i s s u e s r e l a t e d t o HIV p r e v e n t i o n because of the s t u n n i n g l e v e l o f ignorance r e g a r d i n g s e x u a l i t y i n most i f not a l l s o c i e t i e s . 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Crimp (Ed.), AIDS: C u l t u r a l A n a l y s i s / C u l t u r a l A c t i v i s m (pp. 71-86). Cambridge: MIT. Watney, S. (1989). The s u b j e c t o f AIDS. In P. Aggleton, G. Hart, & P. Davies (Eds.), AIDS: S o c i a l r e p r e s e n t a t i o n s , s o c i a l p r a c t i c e s (pp. 64-r73) . Falmer: New York.  129 Weeks, J . (1986). S e x u a l i t y . London: T a v i s t o c k . Whitmore, G. (1988). Someone was here: P r o f i l e s i n the AIDS epidemic. New York: New American L i b r a r y . W i l l i a m s o n , J . (1989). Every v i r u s t e l l s a s t o r y : the meanings of HIV and AIDS. In E. C a r t e r & S. Watney (Eds.), T a k i n g l i b e r t i e s : AIDS and c u l t u r a l p o l i t i c s (pp. 69-80). London: Serpants T a i l .  130  APPENDIX I The i n i t i a l d i s c o v e r i e s h e r a l d i n g a new d i s o r d e r o f unknown o r i g i n were made by p h y s i c i a n s t r e a t i n g p a t i e n t s i n Los Angeles. The CDC was a l e r t e d i n 1981 t h a t p r e v i o u s l y h e a l t h y homosexual men were b e i n g t r e a t e d f o r PCP and KS. By mid-1982, the CDC s t r e s s e d the homosexuality o f those a f f e c t e d and began s t u d i e s a n a l y z i n g the i n t e r r e l a t i o n o f l i f e s t y l e and AIDS. A n a l y s t s l i n k e d 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 b a r s , d i s c o s , bathhouses, and anonymous sex. The CDC used the word GRID Gay R e l a t e d Immune D e f i c i e n c y t o e x p l a i n the medical c o n d i t i o n . The media and the p o p u l a r p r e s s e s s t r e s s e d t h a t the d i s e a s e was a r e t r i b u t i o n f o r the s e x u a l r e v o l u t i o n and l i b e r a t i o n o f the 1960s. Only i n the s p r i n g of 1983, a f t e r a y e a r of s u g g e s t i v e data, the CDC r e c o g n i z e d t h a t the d i s e a s e was more than a syndrome of homosexual men and p r o m i s c u i t y . Yet the CDC continued i t s promotion o f the " L i f e s t y l e H y p o t h e s i s " because of p r e v i o u s outbreaks of o t h e r d i s e a s e s such as L e g i o n n a i r e s ' d i s e a s e . T h i s t r e n d c o n t i n u e d u n t i l 1985, when the f i r s t medical a r t i c l e r e v e a l i n g e p i d e m i o l o g i c a l evidence f o r h e t e r o s e x u a l t r a n s m i s s i o n . The CDC then adopted "AIDS" and emphasized those groups " a t risk."  

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