AIDS Women, Drugs and Social Care - 1st Edition
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AIDS:
Women, Drugs and Social Care
Edited by
Nicholas Dorn
Sheila Henderson
Nigel South
Falmer Press
(A member of the Taylor & Francis Group)
London • Washington, DC
UK
The Falmer Press, 4 John St., London WC 1N 2ET
USA
The Falmer Press, Taylor & Francis Inc., 1900 Frost Road, Suite 101,
Bristol, PA 19007
This edition published in the Taylor & Francis e-Library, 2005.
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© Selection and editorial material copyright Nicholas Dorn,
Sheila Henderson and Nigel South 1992
All rights reserved. No part of this publication may be reproduced, stored in a
retrieval system, or transmitted, in any form or by any means, electronic,
mechanical, photocopying, recording, or otherwise, without permission in
writing from the Publisher.
First published 1992.
British Library Cataloguing in Publication Data
AIDS: women, drugs and social care.—(Social aspects of
AIDS, v. 1).
1. Women, AIDS. Psychosocial aspects
I. Dorn, Nicholas II. Henderson, Sheila III. South, Nigel
362. 169792
Library of Congress Cataloguing-in-Publication Data are
available on request
ISBN 0-203-97589-8 Master e-book ISBN
ISBN 1-85000-873-6 (Print Edition)
ISBN 1-85000-874-4 pbk
Contents
Series Editor’s Preface viii
Acknowledgments ix
Chapter 1 Introduction: The Research in Context 1
Nicholas DornSheila HendersonNigel South
Chapter 2 Living with the Virus: Perspectives from HIV- 7
Positive Women in London
Sheila Henderson
Chapter 3 Responding in a Crisis: Perspectives on HIV, 25
Drugs and Women’s Needs from Edinburgh
Valerie Morrison
Chapter 4 Drugs, HIV and Ireland: Responses to Women in 43
Dublin
Shane ButlerMarguerite Woods
Chapter 5 ‘Tempered Optimism’: Perspectives from 59
Professional and Voluntary Carers in Newcastle
upon Tyne
Malcolm ColledgeSandy Maddison
Chapter 6 ‘It Came from Outer Space!’: Perspectives from 73
the General Population and from Generic Health
and Welfare Professionals in England
Sally HainPaul LottRoger Marsden (NOP Market
Research Ltd.)
Chapter 7 Conclusion: Progress, Prospects and Possibilities 93
Nicholas DornSheila HendersonNigel South
Bibliography 101
vii
Notes on Contributors 105
Index 111
Series Editor’s Preface
The advent of HIV disease has created new challenges for existing systems
of health and social care provision whilst highlighting old deficiencies. In
particular, it has signalled the need for services which are responsive to
the needs of different client groups. Drawing upon interview data
collected in several locations, this book seeks to document aspects of
women’s experience of HIV disease. It focuses upon their encounters
with social services and with the health care system, upon their
experiences as carers, and upon their personal support needs. It also
identifies some of the more positive ways in which women, individually
and collectively, have responded to the epidemic. The accounts it
contains are both candid and outspoken. They identify in no uncertain
terms the various ways in which HIV disease has impacted upon
women’s lives and experiences. The analysis offered is sure to be of value
to policy makers and practitioners alike.
Peter Aggleton
Goldsmiths’ College,
University of London
Acknowledgments
The work reported upon here was made possible by a grant from the
Department of Health AIDS Unit. The editors are most grateful to the
Department for that grant, which enabled us to carry out and sub-
contract the research and to follow up some of the implications in
practical ways, including preparation and publication of a booklet
available from the Institute for the Study of Drug Dependence, Women,
HIV, Drugs: Practical Issues (Henderson, 1990). We were very pleased to
have the opportunity to work with colleagues, throughout Britain and in
Ireland, whose work appears here—and some whose work is not directly
represented, but helped to shape our thinking. Our thanks go to Jane
McLoughlin at the Drugs Advice and Information Service in Brighton,
Sarah Jones and Robert Power at REPORT in Riverside Health
Authority in London, Andrew Bennett at the Merseyside Drugs
Training and Information Centre, Isobel Freeman, Moira Paton and
Avril Taylor at Strathclyde Social Work Department, Kamlesh Patel at
the Bridge Project in Bradford and Joy Awiah at DASH (Drugs Advice
Service, Haringey, north London), who recruited people for and
accommodated group discussions. Karim Murji and Jasper Woodcock
made helpful comments on parts of the manuscript. Finally, we most
sincerely thank all those who took part in the group discussions and
individual interviews at all stages of the research in 1989—199 people in
all.
Sheila Henderson would like to thank the HIV-positive women who
contributed to discussions and all the women affected by the virus who
have since that time shaped her perspectives professionally and
personally.
Valerie Morrison is grateful to the head of the Alcohol Research
group, Dr Martin Plant, for enabling her to take time out to carry out this
work, and to Dr Moira Plant for her constructive comments on the
interpretation of the group discussions. Opinions expressed within the
x
chapter are those of the individuals who took part in the discussion
groups and their honesty and clarity are gratefully acknowledged.
Thanks are also due to Mrs Val Mannings and Mrs Janis Nichol who
gave their time to processing several very messy drafts of this chapter
over the past year.
Shane Butler and Marguerite Woods would like to thank all those
who participated in the research in Dublin.
Malcolm Colledge and Sandy Maddison would like to especially thank
Rita Bell, Senior Lecturer in District Nursing and Kath Johnson,
Lecturer in Health Visiting at Newcastle upon Tyne Polytechnic for
their assistance in conducting the interviews. They would also like to
thank respondents from Newcastle General Hospital, the Royal Victoria
Infirmary, the Community Support Centre, St Nicholas Hospital, the
Regional Health Authority and the Health Education Unit. They are
also indebted to Body Positive, North East for attendance at the meeting.
Last but most important of all their thanks go to those HIV-positive men
and women who agreed to attend the meetings and make a most
valuable contribution to the preparation of this chapter.
NOP gratefully acknowledge all the members of the public and
professionals who took part anonymously in their group discussions.
Chapter 1
Introduction: The Research in
Context
Nicholas Dorn, Sheila Henderson and Nigel South
The short programme of research reported in these pages and carried out
in 19891 was conceived at a time when—despite mounting evidence
that HIV/AIDS was an important issue for heterosexual women and men
—the image of HIV/AIDS uppermost in the mind of the British public
was still predominantly associated with gay men. The picture of HIV/
AIDS worldwide, even at that time, suggested otherwise, as most
dramatically illustrated on the international stage by the epidemic in the
African continent, which indicated that the virus was very much a
sexual, medical, economic and social threat to heterosexuals—men and
women alike. Meanwhile, US statistics suggested that AIDS was the
leading cause of death in New York City among women from 20–40
years of age. In Britain, figures up to the end of March 1989 showed
sixty-eight women with AIDS (@3 per cent of a total of 2,192) and 614
women who were HIV-positive (@7 per cent of a total of 8,638 people
with HIV). Though comparatively small, these numbers both
represented the potential shape of things to come in the epidemic and
registered a growing set of needs perhaps substantively different from
those currently being addressed in the HIV context.
Very little social research and very few service providers had addressed
these needs and women with the virus in the UK were still finding
themselves largely invisible when it came to appropriate HIV-related
service delivery, general public and social policy responses.2 Given the
situation, three things seemed clear to the editors: that the needs of women
in the HIV context would, out of sad necessity, need to rise on the
public agenda, that these needs were likely to differ in some ways from
the needs of men with the virus and that social research had an
important role to play in informing appropriate responses at the level of
both service delivery and prevention. The Women, Risks and AIDS
Project (Holland et al., 1990a, 1990b; Ramazanoglu, 1990; Thomson
and Scott, 1990, 1991), which began in 1988 and still continues, was
2 AIDS: WOMEN, DRUGS AND SOCIAL CARE
significant in seeking to contribute to HIV prevention strategy by
investigating the sociological complexities of young women’s sexuality.
The editors, on a much smaller scale, sought to contribute to the process
of developing appropriate social care responses to women with the virus
via a preliminary insight into women’s needs as viewed by a range of
people actually or potentially affected (see note 1).
At the time, the majority of women with the virus in this country had
become infected through injecting drug use—either directly through
using infected equipment themselves or indirectly through unprotected
sex with drug-injecting partners. It therefore seemed fitting to address
the social care needs of women involved in illicit drug cultures. While
this question had been addressed prior to the advent of HIV by some
drug workers and researchers in the late 1970s and early 1980s (e.g.
Perry, 1980; Gomberg, 1982; Cuskey, 1982) with the concrete result of
DAWN (Drugs, Alcohol, Women, Nationally), both the profile of
(continuing) work with women drug users and the literature had grown
very little during the 1980s (for a recent study and overview of this
literature see Taylor, 1991). An exception at the policy level (preceding
the major rethink of drug services precipitated by HIV/AIDS) figured in
the Advisory Council on the Misuse of Drugs 1984 ‘Prevention’ report
(Advisory Council on the Misuse of Drugs, 1984):
Researchers and policy makers have often assumed that hypotheses
and policies drawn up in response to male drug misuse are equally
applicable to women…the women’s movement has drawn
attention to the need to conceptualise ‘social problems’ (such as
the drug problem) from the point of view of women’s interest and
position in society…we consider that this literature raises important
issues not adequately dealt with in earlier, male-centred work (p.
23).
The policy response to HIV/AIDS among drug users brought with it a
further official spur to consider the needs of women drug users. The
Advisory Council on the Misuse of Drugs 1988 report (Advisory
Council on the Misuse of Drugs, 1988), which warned that HIV was
overtaking illicit drug use as a danger to public health, lent official
support to a shift in drug treatment policy and practice away from purely
abstinence goals and towards an emphasis upon reducing harm from
drug use. The 1989 report recognized that ‘Drug services should review
their policies to ensure they are receptive to the needs of women’
(Advisory Council on the Misuse of Drugs, 1989, p. 41) as an important
THE RESEARCH IN CONTEXT 3
part of the response to HIV. Since that time, important initiatives have
attempted to address women drug users (Henderson, 1990) but the
public profile and scope of such work have far to go, not least in
addressing the specific and differing needs of women from black
communities and lesbians.
Focusing upon the social care needs of women often involves striking
another seam of care, the less public and often invisible range of tasks
conducted by many women in the home and community. The editors
considered that women within illicit drug cultures would be no
exception to this role and that a partner with HIV would add to what
the feminist sociological literature on informal caring has termed women’s
‘double burden of care’ (e.g. Groves and Finch, 1983; Glendinning,
1983). The wider context added a sharper edge to this consideration in
that the 1980s had seen the ongoing debate about community care take
new shape amid policies which dramatically altered the balance between
public and private responsibility for health and welfare—with major
implications for the informal caring roles played by many women.
About the Book
The reader may find some further contextualization of the contributions
which follow useful. The contents of this volume are based upon reports
from some of the cities in which our study was conducted. They trace a
path through the highly variable societal and professional reactions to
women, HIV and drugs in the late 1980s. Beginning with an overview of
some of the issues as expressed by women living with the virus, they
move from those professional and lay carers relatively experienced in
responding in constructive and supportive ways, through those still
struggling to overcome their initial stereotypes, fears and lack of
knowledge, to those who have no direct experience.
First, the chapter by Sheila Henderson focuses upon the issues as
reported by HIV-positive women in London in early 1989. The
problems facing them are given special focus—isolation, stigmatization
(of self and children), coping with their own and others’ fears, making
decisions about pregnancy, continuing to care for themselves, their
children and any male partner, and trying to pull together resources.
Some attempt was made to include women with the virus in most
discussion groups but at the time of the study, it (understandably) proved
difficult for regional and other national researchers to encourage them to
come forward and speak about their needs in a group setting. While some
researchers dealt with this situation by interviewing women individually,
4 AIDS: WOMEN, DRUGS AND SOCIAL CARE
the overall effect was such that representation of their views and
experiences in other chapters is patchy. In London, the more extensive
infrastructure around HIV and AIDS made such an exercise more
possible.
It is clear that while HIV has made an impact worldwide, there have
been considerable national variations in the way it is perceived which
have tended to reflect the pattern of infection. The contribution from
Shane Butler and Marguerite Woods (chapter 4) demonstrates how very
particular cultural and religious factors in another country in close
geographical proximity to Great Britain can shape perceptions of and
responses to HIV differently.
It is also clear that, while a wave of sentiment about HIV has been
articulated within Britain at a national level, there were considerable
regional variations depending upon local circumstances, moral climates
and campaigns. The existence of a local drug scene involving much
sharing of unsterilized injection equipment has been one of those factors
which, in cities such as Edinburgh, has provided a distinct profile of HIV
problems. Because of the relatively high chances of transmission of the
virus to a woman who may both use her partner’s injection equipment
and have unsafe sex, it is in such centres that rates of HIV among
women climbed fastest in the 1980s. Two of the following chapters lend
different dimensions to this regionalized recognition of the needs around
women, drugs and HIV, highlighting the concerns of professionals,
volunteers, family members and HIV-positive women in these cities in
early 1989. The work of Val Morrison in Edinburgh (chapter 3) adds a
new dimension to the well-publicized Edinburgh experience.
Additionally, Malcolm Colledge and Sandy Maddison (chapter 5)
describe the response in the city of Newcastle in north-east England
where, the researchers believed, there may have been a not entirely
recognized expansion of HIV transmission by way of sharing injection
equipment. Common to all these accounts are concerns with women’s
access to services, the question of having children, and the general need
for better information at all levels.
Those professionals, voluntary workers and family members who have
involvement with HIV-positive women demonstrated an ability to draw
upon that direct experience and hence be less reliant upon the
information and imagery conveyed by the mass media. Not so those
members of the general population who have no such contact. Their
judgments and opinions would appear to be more directly shaped by
public images. Even members of the health and caring professions were
often unsure of their feelings and the facts in respect of HIV if they had
THE RESEARCH IN CONTEXT 5
no direct experience of caring for people with HIV. These less informed
responses are discussed in chapter 6, an edited report based on market
research carried out by NOP Market Research Ltd. In various sites in
the Southeast and Midlands of England, NOP conducted four group
discussions with members of the general public, one with lay carers (by
default, rather than design, all female) and four with professionals—all
relatively unfamiliar with people with HIV.
As the NOP material shows, the responses of men in the general
population to the hypothetical prospect of a female member of their
family being HIV-positive ranged from initial incredulity (‘my wife is not
a gay man, so how can she have AIDS?’), through to helplessness (‘what
can I do, apart from drive her to and from the hospital?’) and outright
rejection. Many of these respondents had difficulty in sustaining a
discussion on the needs of women with HIV. This is hardly surprising
since there clearly has been resistance to the idea that HIV and AIDS
could be other than a problem affecting gay and bisexual men.
Public understandings of HIV/AIDS have arguably changed since this
work was conducted. Having moved through a period where the ‘myth
of heterosexual AIDS’ (re)gained significant public attention,3 the
messages about HIV/AIDS have become more mixed. Equally, the
quality of services for women with the virus has improved to some
degree (see chapter 7). Regrettably, these developments parallel an
increase in the numbers of women becoming infected. Reported HIV
figures to the end of June 1991 showed that out of a total of 4,758
people with AIDS, 266 were women—an increase of 93 per cent for the
year—and that there were 1,807 women with HIV out of a total of 15,
837. These reports have always been recognized as underestimates and
recent anonymized screening surveys (Communicable Disease Report,
1991) have painted a more disturbing picture. In Inner London the rates
of seropositivity among sexually active women would appear to be
doubling every twelve months and 1 in 500 pregnant women are
infected. It is much clearer now than when the research reported here
was conducted that the needs of women, both in terms of prevention
and service delivery, should be considered seriously in the context of
HIV/AIDS. It is the hope of the editors that this collection will make
some small contribution to the advancement of that process.
6 AIDS: WOMEN, DRUGS AND SOCIAL CARE
Notes
1 Conducted in seventeen locations in Britain and in Dublin, Ireland. In
extended group discussions and individual interviews, a wide variety of
people (199 in all) talked about their perspectives on women, HIV, drugs
and ‘care’. The research involved members of the general population,
professionals and lay carers without direct experience of HIV issues, those
with some years of experience, and HIV-positive women themselves.
HIV-positive women were always seen individually or in women-only
groups by a woman interviewer. There was a loose structure for the
interviews and group discussions.
2 The Scottish experience was a significant exception in that, in the context
of the Edinburgh experience where drug-related HIV infection was much
higher than elsewhere in Britain, many more women were infected.
3 Headlines such as ‘AIDS—The Hoax of the Century’ (The Sun, 18
November 1989) were typical of many in the wake of statements publicly
attributed to Lord Kilbracken (a member of the All Party Parliamentary
Group on AIDS whose previous eccentric campaigns without the HIV
ingredient had gone unnoticed) to the effect that ‘straight sex cannot give
you AIDS’. This revival was boosted by coverage of Michael Fumento’s
book, The Myth of Heterosexual AIDS (1990, Basic Books) particularly in
the Sunday Times.
Chapter 2
Living with the Virus: Perspectives
from HIV-Positive Women in
London
Sheila Henderson
Introduction
1990 saw the World Health Organization’s (WHO) World AIDS Day
and the international array of accompanying events and activities focus
on women and AIDS. In publicity material following up this theme
(WHO Global Programme on AIDS, 1990) the WHO estimated that at
least eight million people were infected with HIV at that time,
approximately three million of whom were women. It also predicted a
cumulative total of over 600,000 women with AIDS by the end of 1992
and equal numbers of men and women with AIDS by the year 2000.
WHO (WHO Features, 1990) also put AIDS as the leading cause of
death for women aged between 20 and 40 years living in major cities of
the Sub-Saharan region, Western Europe and the Americas. This WHO
initiative to draw world attention to the impact of HIV/AIDS upon
women—those infected and those involved at all levels of care—served
as a prompt for policy makers and service providers and was welcomed
by many who had been involved in relatively long-standing and
committed activity (for Britain, see London Strategic Policy Unit, 1987)
on the ground through to the official level. Its long term effect,
however, has been difficult to gauge not least because there appears to
have been little evaluation of local events and activities on the day, never
mind their impact on policy infrastructures locally, nationally or
internationally.
Turning to the national context, 1990 in Britain, although marked by
ongoing attempts to explode ‘the myth of heterosexual AIDS’, also saw
some revival of flagging AIDS coverage in popular magazines (Take a
Break, 5 May 1990; Hello! 28 April 1990; Cosmopolitan, May 1990; 19,
12 May 1990; Vogue, April 1990; Company, May 1990), a growth in HIV
posts with some remit for women, and conferences and meetings on the
