See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/14294095 Dirty, Diseased and Undeserving: The Positioning of HIV Positive Women Article in Social Science & Medicine · December 1996 DOI: 10.1016/0277-9536(96)00017-2 · Source: PubMed CITATIONS READS 119 425 3 authors, including: Susan Kippax UNSW Australia 265 PUBLICATIONS 7,035 CITATIONS SEE PROFILE All content following this page was uploaded by Susan Kippax on 09 December 2016. The user has requested enhancement of the downloaded file. All in-text references underlined in blue are added to the original document and are linked to publications on ResearchGate, letting you access and read them immediately. Soc. Sci. Med. Vol. 43, No. 9, pp. 1371-1377, 1996 Pergamon S0277-9536(96)00017-2 Copyright © 1996ElsevierScienceLtd Printed in Great Britain.All rights reserved 0277-9536/96$15.00+ 0.00 DIRTY, DISEASED A N D UNDESERVING: THE POSITIONING OF HIV POSITIVE WOMEN SONIA LAWLESS, SUSAN KIPPAX and JUNE CRAWFORD National Centre in HIV Social Research, Macquarie University, NSW 2109, Australia Abstract--The discursive construction of HIV/AIDS associates deviance and disease. Women living with HIV/AIDS, in particular, have been positioned as a source or potential source of infection, and have attracted guilt and blame: in becoming 'diseased' they have failed in their appropriate roles as carers and nurturers, responsible for the next generation. Based on in-depth interviews with 27 women living with HIV/AIDS this paper focuses on three ways of positioning HIV positive women: through discrimination on the part of medical professionals; through internalisation of stigmatisation; and through multiple stigmatisation of women who are or have been illicit drug users or sex workers, The implications of stigmatisation are discussed in relation to accessing health care and support. Copyright © 1996 Elsevier Science Ltd Key words--women, HIV/AIDS, discrimination, injecting drug use The discursive construction of HIV and AIDS has been pointed to by many writers [1-3]. The characterisation of HIV infection as a sexually transmitted disease attracts to it the stigma associated with other sexually transmitted diseases [4], including notions of indiscriminate promiscuity, pollution, and uncleanliness. The only other route of transmission commonly discussed is injecting drug use, which adds to the suggestion that HIV is acquired through activities that are antisocial, unhygienic, and irresponsible [5]. Even in the second decade of the epidemic, HIV infection continues to elicit judgements of personal responsibility and blame to an extent unseen in other illness [6]. In the Western world, the HIV positive body is more often than not assumed to be male. Nevertheless, in a way reminiscent of earlier discourses* surrounding syphilis, women living with HIV have been positioned as a source or potential source of infection [2, 4, 7-9]. This representation has contributed to widespread discrimination, with women being positioned as 'dirty, diseased and undeserving' as we show below. At the same time, the needs and concerns of women have not been addressed [10]. The characterisation of HIV positive women as deviant is not consistent with the known facts. Epidemiological information indicates that women living with HIV became infected largely through Based on a paper given at the 5th National Women and Drugs Conference, Sydney, December 1994. *The terms 'discourse' and 'discursive' are used in this paper to refer to common social meanings, metaphors, and 'stories' that underlie understandings of entities such as 'AIDS'. At times, there are contradictory discourses operating, such as that of the 'innocent victim' and the 'polluted source of infection', which are both implicated in the construct 'woman infected with AIDS'. 'ordinary' heterosexual sex. Globally, heterosexual transmission accounts for over 50% of the 14 million people infected with HIV, of whom over 40% are women [11]. Of the more than 920 women diagnosed in Australia to June 1995, 60% of cases where transmission mode is known, recorded heterosexual transmission as the mode of infection [12]. Twentyseven per cent of such cases were attributed to injecting drug use (IDU) and the remainder were accounted for by means such as medically acquired transmission. (It should be noted that in Australia the mode of transmission is unknown for 60% of cases in women, mostly those diagnosed early in the epidemic.) A recent conference paper [13] has set out in detail some of the contexts and circumstances of the epidemic in Australia that contribute to an understanding of the gender specific nature of social isolation and marginalisation for positive women. Women and their particular concerns have largely been ignored in the HIV/AIDS research literature. For example, as highlighted at a recent conference on HIV disease in women and girls [14], women living with HIV are far less likely to be the object of research than men who are HIV positive. Where research on women living with HIV has been carried out, there appears to have been an overemphasis on marginalised groups such as sex workers and/or injecting drug users [15-18]. In such research, much of which is medical or psychological in nature, these marginalised groups are regarded as potential sources of risk for the 'general population', rather than as groups with their own needs [19]. Further, much of the research on women living with HIV/AIDS has focused upon reproduction, with an emphasis on the foetus or infant [15]. Positive women themselves have begun to contribute to an overall picture of the HIV/AIDS 1371 1372 Sonia Lawless et al. epidemic, usually through personal testimonies and needs assessments [20-25]. Since late 1993, the National Centre in HIV Social Research, Macquarie University, has been involved in documenting the experiences of women living with HIV/AIDS. This paper focuses on the stigma and discrimination experienced by positive women, particularly in relation to the assumption by health care workers, that positive women are or have been drug users or 'promiscuous'. It describes the tension that exists between the need to access HIV-related medical and social services, on the one hand, and the fear of further discrimination, on the other, and how this tension is played out in the women's lives. This work follows on from the 1991 National Needs Assessment of HIV Positive Women [23]. The current project, known as the Women Living with HIV/AIDS project, is an attempt to redress the imbalance that has occurred in research and, more importantly, to gain greater insight into the experiences of positive women. The aim of this paper is to examine in particular the way in which the prevailing discourses framing HIV/AIDS affect women living with HIV/AIDS, regardless of their sexual and drug use historys. METHOD This paper has been informed by twenty-seven completed interviews with women living with HIV and AIDS. The interviews, which were unstructured, took the form of guided conversations. They were conducted at a location and time nominated by the women, and lasted between three-quarters of an hour and two hours. The topics covered in the interviews included: family relationships; sexuality; friendship and support networks; state of health; and experience of health care and HIV-related services. The interviews were tape recorded and transcribed. In order to ensure confidentiality, all identifying information was removed during transcription. The majority of the women interviewed lived in or were primarily accessing services in the greater Sydney metropolitan area at the time of interview. Further interviews are being conducted in other Australian cities and in selected rural centres. To complement the women's accounts of their experiences, interviews with health care workers have also been conducted and are continuing. This paper, however, is based only on the women's accounts. Women were recruited into the study in a number of ways: via the distribution of flyers; by referral from various support groups for women living with HIV/AIDS such as Positive Women; AIDS Councils; by referral from medical and other health professionals; and through snowballing, networking and word-of-mouth. The women's ages ranged from 22 to 55 years, with half of the women being in the 30-35 years age range. They were predominantly heterosexual and 45% of the women had either one or two children, almost all of whom were under the age of ten years. Sixty-eight percent of the women were in a sexual relationship at the time of interview and the majority of their partners and children were HIV antibody negative. Just over half the women had received a tertiary education. The women's incomes ranged from receiving social security to full-time employment. A majority of women indicated that they had experienced a decrease in income since receiving diagnosis. The length of time since diagnosis ranged from less than one year to over ten years. HIV transmission categories as indicated in the interviews are as follows: 44% heterosexual; 23% medically acquired; 18% IDU; 15% unknown. This pattern of mode of HIV transmission is very similar to that found in the population of HIV positive women in Australia generally. Analysis The transcripts of interviews were analysed using the principles of grounded theory, in terms of similarity and difference [26, 27] and a number of common themes emerged from the women's accounts. The narratives are not treated as necessarily true accounts but nor are they considered to be false in any sense. Rather, the ways in which the women attempt to make sense of their experience of living with HIV and AIDS reveal the contradictions and tensions inherent in the prevailing discourses and their positioning within them. This in turn provides an understanding of the social construction of the women's experiences and hence enables strategies to be developed that address the concerns as highlighted by the women. RESULTS We begin with a description of women's accounts of interactions with health care professionals, in which there are many reports of discrimination. This discrimination is understood by the women in terms of the prevailing discourse in which they are stigmatised as deviant. Such a positioning enters into women's interactions with health care workers, and has consequences for women in their attempts to obtain appropriate treatment and support. This is true of all women, regardless of their sexual or drug using history. Next, we examine how the discursive construction of a 'woman with HIV infection' is internalised, leading to self-stigrnatisation, and consider the consequences of such self-stigmatisation. Finally we consider the special case of those HIV positive women who have been or are currently injecting drug users. Discrimination: Assumptions of health care workers All except one of the women interviewed indicated they had been negatively evaluated by health care professionals. In general, the women believed that HIV positive women h e a l t h care providers assumed t h a t their sero-conversion was due to injecting d r u g use or sexual promiscuity even in the face o f evidence to the contrary. 1 didn't get it by using dirty needles or sleeping around you know, I got it through blood, I went into hospital and I got a death sentence . . . and it does hurt me a lot if people assume that l got it that way, I do find that, you know, especially in bigger hospitals they assume everyone used, you know got it through using drugs or being promiscuous •.. I don't like it, I just say look I don't want to be treated any different but I didn't get it that way! Naturally they assume that if you've used drugs you'll have other diseases as well or if you've slept around you've got other sexually transmitted diseases, well no I haven't I'm sorry, you know, and I just tell them and then they d o n ' t . . , we have to stand up for our rights and say no I wasn't like that, sorry I wasn't like that and just say I deserve respect just like everybody else does. M a n y o f the w o m e n ' s accounts indicate t h a t doctors m a k e a s s u m p t i o n s t h a t H I V status is determined by m e m b e r s h i p of a 'risk group'• O n the one h a n d , this a s s u m p t i o n is revealed by a c c o u n t s where a w o m a n w h o asks for a n H I V a n t i b o d y test is told " o h , t h a t ' s not really necessary": In retrospect I know that I sero-converted.., and I was sick for about three months . . . and because I was white middle-class heterosexual no history of IV drug use or sex work they didn't test me for HIV. O n the o t h e r h a n d , such j u d g e m e n t s are also revealed when a w o m a n requests a n H I V a n t i b o d y test a n d is then subjected to a n u m b e r o f questions a b o u t drug use, sexual history, etc., before she is given access to a test. W h e n w o m e n have been diagnosed as H I V positive, for example after d o n a t i n g blood, or d u r i n g pregnancy, they sometimes experience a level o f questioning t h a t indicates t h a t doctors find it difficult to accept t h a t they h a d n o t injected drugs, h a d n o t been a sex worker, a n d were n o t promiscuous. A few o f the lesbians interviewed indicated t h a t the doctors were trying to convince t h e m to ' a d m i t ' t h a t they h a d h a d u n p r o t e c t e d sex with men, h a d w o r k e d as a sex w o r k e r or h a d shared needles. It is extremely difficult for a w o m a n to convince health care professionals t h a t she has n o t engaged in any risk activities a n d hence c a n n o t a c c o u n t for her sero-conversion. T h e recent transmissions t h a t occurred in a health care setting (where four w o m e n were f o u n d to have been infected after u n d e r g o i n g m i n o r surgery in a d o c t o r ' s private r o o m s in Sydney), are a case in point. In a report relating to these cases [28] it was stated that, n o t only the w o m e n themselves, b u t also their relatives, were subjected to a 'structured interview', a review o f their medical records, tested for H I V o n at least two occasions, a n d also for hepatitis B a n d o t h e r sexually t r a n s m i t t e d diseases, o f which n o n e were reported. A l t h o u g h the p o p u l a t i o n figures in Australia indicate t h a t only a minority ( 2 7 % ) o f adult female H I V cases are a t t r i b u t a b l e to injecting drug use [12], 1373 w o m e n ' s experiences o f health professionals indicate t h a t H I V positive w o m e n are automatically assumed to be I D U s or sex workers. I've gone to doctors and it's like, do you know how you got the virus and l say Y e a h . . . and the same doctor will say "Oh you're the one who doesn't know how they got the virus" and it's like yeah what about how I got it thanks, well why don't you tell me, oh is it like that is it? . . . it's like instantly that stigma I must be a junkie I must be a prostitute . . . Such stigmatisation m a y well have serious consequences. If it is true t h a t medical practitioners are influenced by their belief t h a t only ' s o m e kinds' o f w o m e n are likely to be infected by HIV, then s y m p t o m s o f H I V go unrecognised, diagnosis will be delayed, a n d w o m e n ' s health a n d well-being, as well as t h a t o f their sexual partners a n d children, will be placed at risk. In general, the w o m e n h a d developed a n u m b e r o f strategies to deal with a n d avoid discrimination. These included ' s h o p p i n g a r o u n d ' to find services a n d practitioners with w h o m they were comfortable, n o t disclosing their H I V status a n d / o r drug use, or avoiding a n d withdrawing from services a n d s u p p o r t networks. Um I've had some bad experiences with doctors. Um the one that I use to go to before I found out, he became really rude and when I told him he said "someone's got to look after you don't they" and sighing and I could tell they didn't want me there so I gave him the flick.., and when I moved I went and saw another doctor and that was a really bad experience... 1 wanted to find a doctor in my area and he started rolling my arms up and all t h a t . . , pulled my sleeves up and saying "do you use drugs?" and by the time I said "no I don't use drugs" he'd checked it anyway, my arms. Like he didn't believe me or something and then he started saying you do use safe sex and Oh! [pause] I never went back to him but when I was leaving and I was going out the door he just stared at me like I was a fucking freak or something so I never went back to him. The consequences for w o m e n w h o are k n o w n to have a history o f illicit drug use or professional sex work are multi-layered. As indicated in the following quote, w o m e n with a history o f drug use, sex work or assumed to be promiscuous m a y experience great difficulty in accessing a p p r o p r i a t e medical care, s u p p o r t a n d services t h a t are nonjudgmental. . . . that discrimination [related to known history of drug use] you know, when I was in incredible pain with PID [pelvic inflammatory disease], they were giving me Panadol, because methadone would be plenty, I had to ring my own doctor and her sort of going behind my ward doctor's back getting her to say, look this gift needs morphine, she's actually in a lot of pain, and arguing about me lacing a user and--I try to convince doctors that you don't go to that much trouble and effort to get drugs. A hospital is not where you would go, if you were gonna get drugs as a user. You're there for health care, so yea, it's discrimination against users... • . . A l t h o u g h health care workers m a y assume t h a t all positive w o m e n m a y be current or former users of illicit drugs a n d / o r sex workers, discriminatory 1374 Sonia Lawless et al. practices may have even more severe consequences for women who fulfil these negative expectations. These women are particularly prone to being regarded as out of control, manipulative, and not deserving of the care of health professionals. As indicated in the above quote regarding pain relief, much of the discrimination is at least partly institutional. In interacting with health professionals, women may therefore feel a need to hide their HIV positive status or their sexual and drug using history. Such self protective behaviour requires energy and effort. It also places women in a very difficult position and m a n y of the women interviewed spoke of "having to live a lie" or "a double life". . . . I couldn't handle being treated like a drug user I used to write transfusion [on medical documents] . . . to be credible I had to pretend not to be using . . . Interview data indicated that any instance of discriminatory practice is reported to other HIVpositive women, and thus it has an impact on more than the particular woman who was involved in the incident. W o m e n who withdraw from or avoid health services miss out on the level of care to which they and their dependants are entitled. When women feel they are being judged or doubted they are likely to protect themselves by avoiding medical and other support services, which they may actually need. As indicated in the women's accounts in the interviews, such avoidance occurs over a long period of time and frequently when the need is greatest. Polluted source The work of Phyllis Chesler [29] and others has shown how patriarchal society views all women as 'mad' and 'out of control', due in part to women's supposedly emotional as opposed to rational disposition. Within this framework there is a continuum along which different women are placed. This continuum has been given various descriptors, but to use that of A n n Summers [30] women are either: 'damned whores' at one end, and ' G o d ' s police' at the other. Infection with HIV appears to imply failure in the expected traditional role for women as carers and moral guardians. This is compounded by the construction of the HIV positive body as polluted [31], and this applies particularly to women who are seen as 'potential sources of infection to the wider population and future generations' [19, 31]. It may not be surprising, then, that it is in the area of sexuality and reproduction that some of the most blatant forms of discrimination were reported. It is in this context that the discourses of deviance and pollution within which HIV positive women are positioned are translated into practice by health care professionals. ... I found out I was pregnant about five weeks after [receiving diagnosis] and I just didn't know what to d o . . . I just went straight to him [the doctor] and he just immediately made an appointment for an abortion, without, you know, sitting down and taking the matter in h a n d , . . . I went to see him and I said, well I don't want to have an abortion.., he was pretty pissed off.., sent me to another doctor...it was four doctors before I found a doctor that said of course you can have your baby . . . up until then I was really meanly treated ...instantly--and have always been classified or judged or had this attitudinal shit because I'm instantly classed as an IV drug user, that's why I must be positive. And therefore I'm shit, you know a bit of shit. ...I was basically not given a choice to keep the child and 1 suppose in retrospect l probably wouldn't have but I felt I wasn't given a choice . . . I had urn the pre-med and the surgeon came in, and I never met him before, and he said to me, and I was in the contaminated room all separate so I couldn't tell my friends what was going on. And he said "urn are you going to have you--you're having your tubes tied aren't you as well because if you don't, don't ever expect to be treated in this hospital again . . . " In these instances, women are denied the right to have children. Particularly in the latter case, the doctor's insistence on sterilisation implies that the woman cannot be trusted to maintain the practice of safe sex. She cannot be trusted to make an informed decision, but has to consent under threat of withdrawal or refusal of treatment. If women generally are to some extent seen as out of control [29], women who are or have been users of illicit drugs are seen as even more so. Such women are stereotyped as 'polluted' women [32, 33] who are 'necessarily chaotic, not in control of their own lives, and unfit to be in charge of anyone else's' [34]. They are portrayed as 'untrustworthy, immature, promiscuous, irresponsible, inadequate, unnatural, unfit mothers whose drug use is regarded as symptomatic of an inadequate personality' [35]. The above are extreme examples of discrimination, but clearly show that at least some medical practitioners----even those who practise in areas of women's health and reproduction--regard a woman who is infected with HIV as unworthy and untrustworthy. In the light of such judgements, then, it is paradoxical that these same HIV positive women are made 'responsible' for the practice of safe sex 'always' [36]. The impact of such value judgements on HIV positive women's lives in relation to reproduction, and the m a n n e r in which both the women and foetus are positioned within policy and service delivery, is the subject of a forthcoming paper. lnternalised stigma The messages are so powerful and insidious that it is difficult for women not to appropriate them. Further, they are not provided with alternative images that are supportive and non-judgmental. Such an appropriation contributes to feelings of self blame and guilt. He didn't tell me he was bisexual and because I'd used drugs earlier in my life and I hadn't used them for four years I thought it {the virus] had just come out and I had given it to him. I thought it was all my f a u l t . . . It was enough to HIV positive women want to start using again. I felt so guilty I couldn't look at him. I thought I had killed someone.., and then they told me he was bisexual... Like I started intravenous drug using after I got diagnosis, not straight away but within a few weeks. I'd been smoking a lot, drinking a lot and then someone scored for me and I slowly got back into using. ... I don't like people to think that I was a drug user or promiscuous because I was not like that, I've been criticised for saying that, that I'm putting a slur on people that got it the other way but I'm not, you know, that's the way it is for me I didn't sleep around, if you've only ever had sex with your husband and never used drugs why should I be put in the same basket... I know we all stuff up and hurt with the same disease, there's no question about that but I didn't use drugs, I didn't get it that way and I don't want, wouldn't like any one to say to my children you know maybe your mum slept around or maybe she used drugs. Each of these women provides evidence of internalisation of the stigma associated with being HIV positive. In the case of the first woman, she assumes that, because she had been a user of illicit drugs, she must be responsible for her own infection and for that of her partner as well. The enormous burden of self blame, guilt, and sense of responsibility engendered by her assumptions are clearly expressed. For the second woman, there is evidence of conflict between wanting to distance herself from 'others' and at the same time wanting to maintain solidarity and to avoid contributing to the stigmatisation, which can lead to discrimination. Further evidence for self stigmatisation is found in women's accounts of feeling contaminated, for example: After the anger process came the awful feeling of dirtiness and I can't--I couldn't get out of the shower. I was scrubbing and scrubbing my teeth and I'd come out of the shower all shampooed and scrubbed and clean and polished and felt dirty and (laugh) I realised I felt my blood was dirty and my whole flesh was dirty so I mean you can't wash that off... There are few choices available to HIV positive women to develop an appropriate sense of self. The d o m i n a n t discourse positions them as deviant and undeserving, and they either accept this positioning or resist it. Either way, they are faced with undesirable consequences, sometimes finding that they are placed in an impossible situation. If they do not reveal their HIV status, they will not receive appropriate treatment and care; but if they do disclose, they may not receive appropriate treatment and care because of discrimination. The stress of living with HIV is sometimes associated with the uptake or return to using drugs. I guess at the time I was feeling really isolated, I know, I started using again, um which I hadn't . . . I hadn't used until I was diagnosed. As we are aware, women take drugs for m a n y reasons. Some women interviewed indicated they used drugs as a form of pain management and symptom control. Chronic fatigue and energy loss is a well documented symptom of HIV. But the SSM 43/9--D 1375 expectation placed on women by society does not allow for this. Some women revealed that they had started to use amphetamines ('speed') as a way of increasing their energy and endurance. In particular this was mentioned in relation to wanting to have energy to play with children, to take care of family needs, and for social interaction with friends. The stigma associated with using illicit drugs is part of the women's internalised stigma. It increases fear of discrimination, and adds to stress associated with interactions with health care workers. In some instances, this was reported by the women, which lead to avoidance of contact with services that may have helped to alleviate the stress. CONCLUSION The stigma experienced by the women interviewed operates on a number of levels: 1. Stigma of sexual deviance and 'promiscuity', which clings to the whole topic of HIV/AIDS 2. The association of injecting drug use with deviance and self-inflicted harm 3. Stigma based on the assumption that women have departed from the socially prescribed behaviour worthy of 'good women'. The discrimination that can and does flow from such stigma is difficult for anyone to cope with. Unfortunately some HIV positive women, namely those who are otherwise marginalised, must deal with further discrimination and stigma from other positive women themselves. The general lack of support services for women living with HIV has been pointed out elsewhere [23-25, 36]. As revealed in the women's accounts, women who are living with HIV and who are otherwise marginalised as well (such as injecting drug users, sex workers and lesbians) find that services that meet their needs are almost non-existent. Although all HIV positive women are affected either directly or indirectly by stigmatisation and discrimination, the increased social isolation and poorer health of positive women who are also injecting drug users makes them particularly vulnerable to the effects of discrimination. It is known that there is a strong relationship between social support and increased health and well being [37, 38]. The social isolation of women living with HIV makes them especially dependent on medical practitioners. Yet health care support is extremely problematic for many HIV positive women. In summary, then, the experience of discrimination and the self-stigmatisation that increases fear of discrimination, affects women's willingness and ability to access health and support services that they may need. From the outset, such fears, combined with the responses of health professionals may lead 1376 Sonia Lawless et al. to delayed or mis-diagnosis. Other possible effects include women's failure to disclose important aspects of their health or history, resulting in sometimes inappropiate treatment, such as failure to obtain appropriate prophylaxis. In matters of sexuality and reproduction, positive women find it difficult or impossible to access non-judgmental services. Finally, services appropriate to women's needs may be simply not available. As well as experiencing the stigmatisation and consequent discrimination inherent in their positioning within H I V / A I D S discourse, women have no alternative discourses through which they may understand themselves. In taking on the view of themselves as stigmatised, they are faced with an added burden, namely the protection of those close to them from stigmatisation by association. Historically there has been a constant connection between sickness and sin, the impure, the undeserving and the guilty [4, 31]. In their embodiment of these historical connections, women who are HIV positive may well be denied the basic h u m a n right to be treated with respect and dignity. This is unacceptable, and presents a challenge for all of us, as women and as researchers, to increase advocacy for the rights of positive women, and to contribute to the deconstruction of the discourses that produce discrimination. Acknowledgements--We acknowledge the invaluable contribution of the women interviewed and other HIV positive women, be it directly or indirectly, to this research. Also we thank organisations and all the service providers who have offered their support and input into the Women Living with HIV/AIDS research project. Special thanks to Vivienne Munro (Women's HIV Support Officer, ACON), Bev Greet (Positive Women (Victoria)) and Lisa Brockwell (Womens and AIDS Project, ACON). REFERENCES 1. Lupton D. Moral Threats and Sexual Punishment. Taylor and Francis, London, 1994. 2. Treichler P. A. AIDS, homophobia and biomedical discourse: an epidemic of signification. In AIDS: Cultural Analysis and Cultural Activism (Edited by Crimp D.), pp. 31-70. MIT Press, Cambridge, Mass, 1988. 3. Watney S. Policing Desire, Pornography, AIDS and the Media. Comedia, London, 1987. 4. Gilman S. AIDS and syphilis: The iconography of disease. In AIDS: Cultural Analysis and Cultural Activism (Edited by Crimp D.), pp 87-107, MIT Press, Cambridge, Mass, 1988. 5. Novick A. Clinical trials with vulnerable or disrespected subjects. AIDS Pub. Pol. J. 4, 125, 1990. 6. McDonnell J. Judgments of personal responsibility for HIV infection: An attributional analysis, Soc. Work 38, 403, 1993. 7. Goldin C. Stigmatization and AIDS: Critical issues in public health. Soc. Sci. Med. 39, 1359, 1994. 8. Waldby C., Kippax S. and Crawford J. Cordon sanitaire: "Clean" and "unclean" women in the AIDS discourse of young heterosexual men. In AIDS: Facing the Second Decade (Edited by Aggleton P., Davies P. and Hart G.), pp. 29--41. Taylor and Francis, London, 1991. 9. Batten L. Women and HIV/AIDS: A literature review. Nurs. Praxis N.Z. 8(2), 4, 1992. 10. Discrimination--The other epidemic: Report of the Enquiry into AIDS related discrimination. New South Wales Antidiscrimination Board, April, 1992. 11. HIV/AIDS Global Summary. AIDS and Soc. January/ February 1995. 12. Australian HIV Surveillance Report. National Centre in HIV Epidemiology and Clinical Research 11(4), October, 1995. 13. Crawford J., Lawless S. and Kippax S. Positive women and heterosexuality: problems of disclosure of serostatus to sexual partners. Paper presented at Social Aspects of AIDS Conference, South Bank, London, October, 1995. 14. National Conference on Women and AIDS report: GMHC Treatment Issues, March 1995 as cited in HIV: An Electronic Media Information Review 2, April 28, 1995. 15. Hankins C. Women and AIDS: psychosocial issues in Japan summaries. AIDS Care 7, 80, 1995. 16. Plant M. AIDS, Drugs and Prostitution (Edited by Plant M.), pp. xiv-xvii. Routledge, London, 1990. 17. Plant M. Sex work, alcohol, drugs, and AIDS. In AIDS, Drugs, and Prostitution (Edited by Plant M.), p. i, Routledge, London, 1990. 18. Scambler G. and Graham-Smith R. Female prostitution and AIDS: The realities of social exclusion. In AIDS: Rights, Risk and Reason (Edited by Aggleton P., Davies P. and Hart G.), pp. 68-76. Falmer Press, London, 1992. 19. Strebel A. Whose epidemic is it? Reviewing the literature on women and AIDS. S. Aft. J. Psychol. 25, 12, 1995. 20. O'Sullivan S. and Thomson K. (Eds) Positively Women: Living with AIDS. Sheba Feminist Press, London, 1992. 21. WHRC. Positive Women: Women with HIV/AIDS Speak Out. Backyard Press, Victoria, Australia, 1992. 22. O'Keefe T. and Walker I. Being Positive: Living with HIV/AIDS. Alken Press, Sydney, 1992. 23. Mkwananzi M. National Needs Assessment of HIV Positive Women. Macquarie University, Australia, 1994. 24. Gorna R. Women Like Us: Positively Women's Survey on the Needs and Experiences of HIV Positive Women. Positively Women, London, 1994. 25. Brander P. and Norton V. Women Living with HIV/AIDS. Ministry of Health, Wellington, N.Z., 1993. 26. Glaser B. G. and Strauss A. L. The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine, Chicago, 1987. 27. Strauss A. Qualitative Analysis for Social Scientists. Cambridge University Press, Cambridge, 1987. 28. Chant K., Lowe, D., Manning W., O'Donoughue R., Lyle D., Levy M., Moxey S., Raldor J., Garsia R., Penny R., Marriott D., Cunningham A., Douglas Tracey G., Rubin, G. Patient-to-patient transmission of HIV in private surgical consulting rooms. Lancet 342, 1548, 1993. 29. Chesler P. Women and Madness. Avon Books, New York, 1972. 30. Summers A. Damned Whore and Gods Police: The Colonization of Women in Australia. Penguin Books, Melbourne, 1975. 31. Gillman S. L. Disease and Representation: Images of lllness from Madness to AIDS. Cornell University Press, Ithaca, N.Y., 1988. 32. Ettore E. Women and Substance Use. Macmillan, London, 1992. HIV positive women 33. Taylor A. Women Drug Users: An Ethnography of a Female Injecting Community. Clarendon Press, Oxford, 1993. 34. Perry L. Women and Drug Use: An Unfeminine Dependency. Institute for Drug Dependence, London, 1979 as cited in Taylor, A. Women Drug Users: An Ethnography of a Female Injecting Community p. 5. Clarendon Press, Oxford, 1993. 35. Wolfson D. and Murray J. (Eds) Women and Dependence. DAWN, London, 1986, as cited in Taylor A. Women Drug Users: An Ethnography of a Female 1377 injecting community p. 5. Clarendon Press, Oxford, 1993. 36. Lawless S., Crawford J., Kippax S. and Sponberg M. If it's not on ...: Heterosexuality for positive women. Venereology 9, 15, 1996. 37. Cohen S. and Syme S. L. Issues in the study and application of social support. In Issues in the Study of Social Support (Edited by Cohen S. and Syme S. L.), pp. 3-22. Academic Press, Sydney, 1985. 38. Green G. Editorial review: social support and HIV. AIDS Care 5, 87, 1993.