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.