Sociology Health Illness - 2001 - Crossley - Sick Role or Empowerment The Ambiguities of Life With An HIV Positive

Sociology of Health & Illness Vol. 20 No.4 1998 ISSN 0141–9889, pp.
507–531
‘Sick role’ or ‘empowerment’? The ambiguities

of life with an HIV positive diagnosis
Michele Crossley
Department of Psychology, Centre for Studies in the Social Sciences,
Edge-Hill University College
Abstract This paper addresses the relevance of Parsons’ concept of the

‘sick role’ to the experience of illness in contemporary society by
building on recent research, which suggests that the increasing
predominance of chronic disease changes the temporal structure
of the experience of illness. This has important implications for
the structure of social expectations and obligations associated
with the ‘sick role’. In particular, recent advocates of ‘insider’
views of illness and the related promotion of ideologies of
‘patient empowerment’ have contested assumptions of depen-
dency implicit within the concept of the ‘sick role’, presenting a
far more ‘independent’ and ‘proactive’ vision of the sick individ-
ual. With specific application to a group of people living
relatively long term with an HIV positive diagnosis, this paper
addresses some of the implicit ambiguities manifest in the self-
empowerment ethos, highlighting some implicit dependencies
underlying the rhetoric of empowerment and concluding that a
more structural analysis of illness experiences, such as that
proposed by Parsons, may be apposite.
Key words: HIV positive; sick role; empowerment; Parsons; rights; duties
Introduction
This paper explores some of the ambiguities surrounding the position of the
‘ill’ or ‘diseased’ individual in contemporary society, specifically by refer-
ence to a group of people who have been living relatively long term with an
HIV positive diagnosis. It does so first by briefly outlining Parsons’ concept
of the ‘sick role’ as one way of portraying the social situation of the ill per-
son; a situation characterised by relief from certain social duties and
responsibilities and yet acceptance of additional obligations and expecta-
tions. In recent years, however, this characterisation of the sick role has
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508 Michele Crossley
been criticised by various social and health researchers who have argued
that Parsons’ work is essentially outdated and fails to capture the nature of
illness experienced by many individuals in today’s society (see Gerhardt
1989, Levine and Kozloff 1978, Turner 1986). For instance, in recognition
of the fact that the main health problems and causes of death in Britain
today are chronic diseases1 Radley (1994) argued that the long-term tempo-
ral structure of the experience of chronic illness serves to present a very dif-
ferent picture of illness from that presented by Parsons which assumed a
relatively short-term, temporary experience.
The temporal horizon of illness is important because it has important
implications in terms of the relinquishing of social duties and acceptance of
social obligations characterised by Parsons as typical of the sick role.
Radley has argued, for instance, that people suffering from chronic illness
are not readily exempt from social obligations such as employment and are
therefore less likely to appropriate a sick role and correlatively, more likely
to adopt an independent stance in learning to live with their illness. This
has led in recent years to the advocacy of insider views of illness and a more
general patient empowerment ideology.
People living with a long-term HIV positive diagnosis present an excel-
lent opportunity to examine the way in which a temporal horizon affects
the illness experience of a particular group of people in contemporary soci-
ety. This paper aims to examine the way in which the ambiguous temporal
horizon associated with HIV/AIDS progression has created an experiential
situation for some HIV positive individuals which lies somewhere between
the dependent sick role and the empowered individual. In particular, it
examines the way in which certain ‘obligation’ elements of the sick role are
rejected by HIV positive individuals in favour of the advocacy of an
empowerment ideology. Simultaneously however, the paper also examines
how the rhetoric of empowerment co-exists uneasily alongside a number of
presupposed sick-role–like dependencies. The aim of this paper is to render
explicit these contradictory features of the HIV positive individual’s experi-
ence, and to suggest that a blanket advocacy of the empowerment perspec-
tive actually fails to incorporate sufficient understanding of the structural
and functional aspects of the sick role so central to Parsons’ analysis. The
validity of the interpretations put forward in this paper is based on an
attempt to locate the voices and opinions of a group of HIV positive indi-
viduals within the dominant, frequently contradictory and ambiguous ‘dis-
courses’ available to them (see also Crossley 1998a, forthcoming, Crossley
and Crossley 1998b).
More generally, this paper seeks to explore the potential and neglected
‘downside’ of the concept or discourse of empowerment as it is incorpo-
rated and utilised by a specific group of long-term HIV positive individuals.
Are these individuals as empowered as they make out? What does it mean
to be empowered? How can a person claim to be empowered, independent,
above the normal humdrum of social rules and regulations, whilst simulta-
© Blackwell Publishers Ltd/Editorial Board 1998
‘Sick role or empowerment’? 509
neously remaining dependent in some of the most crucial, fundamental

ways? And is this important anyway? If a person feels empowered, is that
not sufficient? This paper uses some of Parsons’ insights in order to make
further sense of these ambiguities, and cautions against the too ready
appropriation of an insider view of illness.
Parsons’ concept of the ‘sick role’
In his seminal concept of the sick role Talcott Parsons (1951a, 1951b) high-
lighted the fact that sickness and the experience of being ill is not just a
physical/biological phenomenon but a socio-cultural one insofar as it
locates people within social roles incorporating certain institutionalised
expectations. Parsons emphasised how these expectations include certain
rights and responsibilities which serve to change the sick person’s orienta-
tion towards other people in society and vice versa. The role of the sick
person has four well-known features according to Parsons. First, the sick
person is allowed temporary relief from certain social duties and responsi-
bilities. Give the pervasiveness of the Protestant work ethic in the 1950s
Western context of Parsons’ work, the whole concept of social responsibil-
ity is tied up with ideas about rights and obligations in the workplace;
hence, it is not surprising that one of the main exemptions associated with
the sick role is relief from the responsibilities of work (see also Gerhardt
1989). Such exemption requires validation from others, most importantly
medical practitioners who have the power and authority to confer legiti-
macy upon the individual’s experience of illness.
The second feature of the sick role is that the sick person cannot be
expected to pull him/herself out of sickness by an act of decision or will and
in this respect is largely exempt from responsibility for getting well. As a
corollary to this exemption, however, the sick person is under an obligation
to seek technically competent or medical help as a means of overcoming
sickness. Seeking such help, according to Parsons, means that the individ-
ual enters into a doctor-patient relationship characterised by an asymmetry
of knowledge, competence, authority and power in favour of the doctor.
This has the implication that the ‘patient’ is required, to a certain degree, to
enter into a relationship of dependency, compliance and co-operation in the
service of getting well. The relinquishing of the ‘healthy’ right to indepen-
dence in the context of the doctor-patient relationship and also in relation
to other contexts in which certain social responsibilities are shed, is related
to another feature of the sick role – the definition of the state of being ill as
undesirable and thus as temporary, with a desire on the part of the patient
to want to get well and re-capture the independence that s/he has lost in the
course of the illness experience.
For Parsons, these features of the sick role and the associated relation-
ship between doctor and patient are functional to the restoration and
preservation of order within the social system, comprising part of his analy-
sis of medicine, as one profession amongst others, working in the service of
social control. More specifically, the sick role channels people who experi-
ence illness into communication with a physician rather than into group
formation with a ‘sub-culture’ of other sick people within whose company
the dependency associated with illness may become contagious and viewed,
at the very least, as non-problematic, and at the worst, desirable. In addi-
tion, limiting the possibility of sub-culture formation serves to insulate and
isolate the healthy from the sick thus preventing the spread of dependency
and anti-social values associated with sickness.
Critique and defence of the ‘sick role’ from the standpoint of chronic illness
Obviously, there have been many critiques of Parsons’ concept of the sick
role but here I will focus on those most relevant to the main objective of
this paper, namely, an examination of the potential utility of Parsons’ ideas
for understanding the position of people diagnosed HIV positive in contem-
porary society. As early as 1975 Parsons’ model of the asymmetric role
patterns existing between physician (or health care agency) was criticised
because it allegedly rendered the patient passive and failed to take sufficient
account of the patient’s agency and independence in orienting to and
coping with disease (see Parsons 1975). In other words, the model exagger-
ated the authority of medical professionals and underplayed the authority
of the patient. This was thought to be especially the case because of
Parsons’ focus on acute as opposed to chronic illness. As I have already
suggested, the temporal structure of chronic illness, existing over the long
term, fundamentally changes the individual’s experience of illness. More
recently, for example, Radley (1994) has argued that the relatively long-
term structure of chronic illness is important because the exemption from
social responsibilities and duties characteristic of Parsons’ sick role is
related to the presumed temporary nature of the disease. For instance,
Segall (1976) argued that the long-term nature of chronic illness has the
implication that individuals suffering from such illnesses are not exempt
from social responsibilities but must continue with normal life as best they
can (see also Bury 1988, 1991).
This, in turn, has implications in terms of the patient’s alleged obligation
to seek technical help, the doctor-patient relationship and related issues of
dependence and independence. According to Parsons the role of the physi-
cian involves a responsibility towards the patient in terms of a facilitation
of recovery but numerous problems may stall the adequate performance of
this task, including the element of uncertainty with regard to certain ill-
nesses. Radley (1994) suggests that an element of uncertainty pervades
modern consciousness concerning chronic diseases because of the lack of
medical knowledge of what exactly causes such diseases, and of how to cure
them. The lack of medical knowledge and competence concerning how to

treat these illnesses subsequently has an impact on the structure of the
chronic patient’s relationship with his/her physician. This is because the rel-
evant knowledge or competence required by the individual living with a
long-term chronic illness may not be the kind of ‘technical’ or ‘biomedical’
knowledge that the physician is trained to provide. The practical, everyday
problems experienced by the sufferer of chronic illness may be better under-
stood by other people in the same situation and in the absence of a course of
treatment or cure2 the physician’s role may become largely redundant, with
a related decrease in patient dependency.
This understanding of the experience of chronic illness celebrates the
authority of the patient in living or dealing with his/her illness, challenging
the authority of professional technical knowledge and competence assumed
in Parsons’ model. In Conrad’s (1987) terms it relates to an ‘insider view’ of
illness rather than the ‘outsider view’. The development of such insider
views of illness is linked to the widespread growth of self-help groups, one
manifestation of the modern philosophy of self help which questions
whether people should rely on the supposed authoritative knowledge and
expertise of doctors to prevent and cure disease (see Gouldner 1971,
Johnson 1972).
In his own defence, however, Parsons (1975) responded to, and antici-
pated some of these criticisms by denying that his model of asymetric role
patterns between physician and patient rendered the latter passive and
applied only to acute illness. Rather, he argued that regardless of the type
of illness suffered by the patient, and regardless of the degree of active par-
ticipation and responsibility assumed by the patient for his/her own health,
dealings between patients and physicians (or other health care agencies),
will inevitably be characterised by asymmetry because they take place
within a social structure where hierarchial positions of power, authority
and prestige are involved. Moreover, this asymmetrical structure is func-
tional insofar as a particular profession is involved with the responsibility
for maintaining the state of health of the general population. It could be
argued from the insider perspective that this responsibility for health is not
the sole province of professional authority, especially in the light of con-
temporary society’s emphasis upon prevention, but is also (if not primarily)
the responsibility of people within the general population. Of course, this is
true, but according to Parsons, people in the general population still lack
two major components which continuously serve to reinforce the asymmet-
rical nature of the relationship between patient and physician: ‘Professional
competence’ and ‘Professional concern’. Professional competence is charac-
terised by a level of knowledge and skill capacity independent of personal
experience or exposure to, for example, a particular disease. This kind of
competence is characterised by technical knowledge and skill founded on
formal training and experience. This is complemented by professional con-
cern by which Parsons meant that the physician operates as a ‘general
trustee’ of the health interests of the general population, working on the

assumption that the state of health is a good thing, illness a bad thing, and
thereby attempting to maximise the level of health and minimise the inci-
dence of illness. In so doing, the medical professional performs a function
of social control by reinforcing the patient’s motivation to minimise illness
and its associated disabilities. In the course of chronic illness the physician’s
objective is to ‘reinforce the patient’s motivation to minimise the curtail-
ment of the pathological condition, even though the condition cannot be
eliminated in the sense of total cure’ (Parsons 1975). In conclusion, Parsons
defends himself by arguing that:
My intention was . . . to set forth the most important reasons why the
professional-lay relationship in the field of illness and health cannot be
treated as a fully symmetrical relationship. . . . That is to say that, with
respect to the inherent functions of effective care and amelioration of
conditions of illness, there must be a built-in institutionalised superiority
of the professional role, grounded in responsibility, competence and
occupational concern . . . I fail . . . to see how it is at all possible to
eliminate the element of inequality . . . (Parsons 1975)
Some critics have argued that this defence misses the point made by
Parsons’ critics. It was not the ‘inequality’ of the sick role that concerned
them so much as the lack of reciprocity and Parsons’ invalid assumption
that the doctor-patient role is complementary and functional. According to
this view, the doctor-patient relationship is very variable and does not
conform to the ideal patient/ideal doctor scenario painted by Parsons. Far
from the roles being complementary, they are full of potential conflict
because of social differences in power and knowledge (Bloor and Horobin
1975). This is undoubtedly true, but I do not think it changes the funda-
mental argument of Parsons’ regarding the potentially functional, though
perhaps overly idealised role of professional superiority embedded within
the doctor-patient relationship. It is in view of these debates that I intend to
explore the relevance of Parsons’ conception of the sick role to a group of
people living with a long-term HIV positive diagnosis.
Sample and Method
The material for this paper was drawn from research commissioned by the
European Commission as part of their ‘Europe Against AIDS’ programme
on the psychological, emotional and service delivery needs of long-term
HIV positive individuals (see Davies 1995). The study focused on the needs
of a cohort of long-term survivors in Britain who belonged to a group
called the National Long-Term Survivors Group (NLTSG). It was con-
ducted over a two year period, from 1994–1996. The methods used in the
study consisted of a combination of qualitative and quantitative

approaches including survey by questionnaire, in-depth semi-structured
interviewed with 38 individuals and participant observation at NLTSG resi-
dential weekends. This paper draws mainly from data collected during
interviews.
The interview format consisted of a modified version of Schwartzberg
(1993) and aimed to address the interrelated physical, psychosocial and
existential dimensions of the HIV positive individual’s experience including:
medically related issues and concerns; issues related to intimate, interper-
sonal and social relationships; the impact of HIV/AIDS in specific ‘risk
groups’ and communities, e.g. gay and haemophiliac communities; the
impact of various forms of psychosocial interventions; issues of life, mortal-
ity, death, illness, bereavement and grief; and issues of belief, religion and
spirituality. People attending the residential weekends were asked if they
would take part in the study by completing a questionnaire and participat-
ing in an interview session. The interviews lasted on average about 90
minutes and they were all audio-taped and transcribed verbatim. The tran-
scripts were coded and analysed into different thematic categories. The
majority (n=31) of interviewees were gay men, four were women and three
were haemophiliacs. The median age of the sample was 38.5 years. The
average amount of time these people had been living with an HIV positive
diagnosis was nine years.
The sick-role and people living for over five years with an HIV positive
diagnosis
As has already been highlighted, the temporal structure of particular ill-

nesses is important in assessing the validity of Parsons’ theory. In the first
instance, therefore, it is necessary to outline the nature of the situation
faced by individuals diagnosed HIV positive.
One of the main characteristics of the HIV/AIDS situation both in terms
of ‘objective’ medical knowledge and the ‘subjective’ experience of living
with the infection, is that of uncertainty (see Davies 1995, 1997). The aver-
age amount of time that people in this sample have been living with a HIV
positive diagnosis is nine years which means that most of them were diag-
nosed HIV positive around about 1985. At that time very little was known
about the progression of the disease and most people were led to believe
that the diagnosis was terminal and that they were likely to die in the near
future, between one to two years. As time moves on these people are still
alive, relatively well and somewhat bewildered about the diagnosis and the
implications it has for them. In one man’s words: ‘They (the doctors) told
me I would die within the year, but I am still here ten years on . . .’
Medical scientists are equally uncertain with regard to the prognosis of
HIV infection although current estimates suggest that the cumulative risk
of AIDS increases over time with 12 per cent of HIV-infected homosexual

men developing AIDS five years after seroconversion, 53 per cent within
ten years and 61 per cent within 11.8 years. In addition, some researchers
have recently questioned the assumption that people infected with the virus
will necessarily progress to AIDS (Bulterys 1993, Mineva, 195, Phillips et
al. 1994, Vanhems et al. 1991).
This uncertainty with regard to the temporal dimension of HIV infection
throws up some interesting questions concerning how to classify it. On the
one hand, the people in this group have been living relatively long term
with the diagnosis and, although largely asymptomatic, are forced to learn
to live with disruptive symptoms accompanying HIV infection such as
thrush, skin problems, night sweats, shingles etc. In addition, they face the
prospect that these relatively minor problems could worsen in the future
and create further debilitation with the onset of AIDS-related illnesses such
as Kaposi’s sarcoma, other forms of cancer, Pneumocystis carinni pneumo-
nia (PCP) etc. In this regard a person living with HIV infection faces a situ-
ation similar to that of the chronically ill individual.
On the other hand, however, it may be argued that their position is more
comparable to the terminally ill person who is forced to confront the immi-
nence of his/her death. However, this perspective seems unduly pessimistic
in the light of research questioning the assumption of the inevitability of
progression from HIV to AIDs, and recent developments in triple combina-
tion therapy. Moreover, it is difficult to categorise a person as terminally ill,
when, from the stage of initial diagnosis, they may live free of AIDS-related
illnesses for, on average, another nine years, possibly 20–25 years, and pos-
sibly (although unlikely), for the rest of their lives. From this perspective,
the situation of the HIV positive individual is analogous to people who are
diagnosed as genetically predisposed to illnesses such as cancer and heart
disease (although the predisposition is statistically far greater with HIV
infection), a situation that will become increasingly common in the future
with the advance of the human genome project and the availability of
genetic testing (see McLean 1994, Nelkin and Tancredi 1990, Shapiro 1991,
Wertz 1992). In Parsons’ terms it would be socially dysfunctional to classify
such people as ‘sick’, first because the gap between diagnosis of predisposi-
tion and onset of disease may be relatively long term, and secondly, because
given the anticipated proliferation of such testing, ‘sickness’ defined on
these terms would no longer be a ‘deviant’ condition and relatedly, the
functional role of sickness would be rendered defunct.
Regardless of these difficulties regarding the temporal structure of illness,
however, the majority of the people in the group we are concerned with can
be characterised as occupying a ‘sick role’ insofar as 90 per cent of them are
exempt from social responsibilities such as paid employment, and are con-
sequently in receipt of financial benefits such as Disability Living
Allowance and Higher Level Disability Living Allowance (the DLA bene-
fits are approximately equivalent to £12,000 non-taxable income per year)3.
Only one person in the sample had been sacked from his job 10 years ago
when he had informed his employers of his HIV positive status. The most
common reasons people gave for voluntarily giving up work were health
related. Although they had not experienced AIDS-related illnesses, most
people referred to extreme tiredness, stress, lethargy and lack of energy
which had more or less forced them to give up work as a preventative mea-
sure to preserve their health. The following examples are typical: ‘I have
had to give up working . . . the work was too stressful, the hours were too
long and it was actually damaging my health . . .’; ‘I had to give up work
. . . because I would have to be forever . . . taking time out and taking time
off . . . and tiredness, aching muscles . . . and I am standing up all day . . .’
The use of prevention of ill-health as a justification for giving up work is
most evident in the following quote:
Well, I feel very guilty about it [giving up work] because, not having any
serious illnesses, I feel like I should be back at work working because the
amount of hours I do . . . voluntarily . . . but there again, psychologically,
would I be able to hold down a job? . . . I think psychologically if I was
working I wouldn’t last out . . . Because I am sure that I would be ill . . .
Knowing that I had to be in at times and expected to do things . . .
As has already been pointed out, Parsons’ concept of the sick role, a role
legitimated by the medical profession, exempts people from social responsi-
bilities such as work for a temporary period of time until they get better. The
corollary to exemption from responsibility involves a duty or obligation to
seek technically competent help in order to facilitate this process. Radley
(1994) argues that this obligation to seek help is not so apparent amongst
individuals suffering from chronic illness, partly because the non-temporary
nature of their condition means that they are frequently not exempted from
social responsibilities and subsequently, their needs cannot necessarily be ful-
filled by biomedical interventions. With regard to this sample of long-term
HIV positives, although the condition may not be temporary, they have been
accorded exemption from certain social responsibilities and are therefore
obliged to seek medical help and accept a degree of dependency. As will be
demonstrated, however, such dependency is often resented and denied, often
in the name of ‘empowerment’. We shall see how this is so, first, in relation to
the rejection of medical authority, and secondly, with regard to the rejection
of social (including sexual and reproductive) obligations.
Rejecting the sick role:
Questioning medical authority: asserting experiential authority

Very few people in this sample accepted a compliant, dependent relation-
ship with their doctors. The comment by one man in his mid-50s that ‘If I
have any problems I have wonderful doctors and a wonderful hospital’

offered a very rare exception. A more common perspective amongst the
group was one which as sceptical of the medical profession and associated
medical technology and knowledge. This scepticism centred on perceptions
of the uncertainty, incompetence and lack of knowledge of the medical pro-
fession concerning to HIV/AIDS and the compliance and objectification
associated with the attitudes of some physicians and biomedical forms of
treatment.
The haemophiliacs in the group, not surprisingly, were particularly criti-
cal of the medical profession for their ‘incompetence’ insofar as these
people contracted the virus through contaminated blood products. Such
criticism was evident in the following comments. Steve, aged 26: ‘I think the
hospitals and medical staff are crap . . . I think they are just useless . . .’;
And Sarah, a HIV positive woman, the wife of Mark who had recently died
from AIDS: ‘I feel really bitter the way Mark got it, through the hospital. I
mean you go to have treatment to get better not to come out and die . . .’;
and Jim:
I was having a jab one day and I really didn’t want another injection . . .
and my wife said . . . ‘Oh, don’t worry Jim, they have already given you
HIV, what else can they give you?’ . . . The doctor said ‘I don’t think that
is very clever, there is no need to say that’ . . . and I just sort of . . . nearly
wet myself in the seat (from laughing). . . .
More common within the group, however, was a more general scepticism
because of medical uncertainty and lack of knowledge about disease prog-
nosis, forms of treatment and vaccination.
There was also a particular aversion to certain medical tests and forms of
treatment imposed upon the individual. For instance, the CD4/T4 lympho-
cyte blood cell count (the blood cells initiating immune responses to anti-
gens, normally destroyed with the progression of HIV infection, and
therefore used as a surrogate marker of disease progression), represented a
particular bone of contention amongst many long-term HIV survivors. The
following comments by Simon and Gary were typical:
I don’t think the CD4 count should be used as a sort of surrogate marker
. . . if you are using CD4 . . . as a rule of life and death and turning round
to people and saying, well as your CD4 falls so do you, then you are really
giving people a death sentence and I am not going to be part of that.
. . . Theoretically my T4 cell count is low but that seems to have no basis
in real life, in the real world . . . they say that if your T4 cell count is below
a level, then you are ill, you know, the Americans set up the control
definition of AIDS as a T4 cell count below 300. Mine has been around
200 for years and nothing happens . . . I don’t think it makes a great deal
of difference . . . it’s a nominal thing . . .
Many other survivors expressed similar beliefs, repeatedly referring to the

fluctuating nature of the blood count and the fact that it bore little relation-
ship to actual condition, progression and prognosis.
A similar aversion to drug treatments and the ‘ability’ of drugs such as
zidovudine (formerly known as AZT) to control the progression of the dis-
ease was evident within the group. For instance, the following comment by
Jim was typical:
I am tired of being asked to reconsider various drug treatments, recon-

sider going on AZT, try this, try that, try Septrin, you should at least be
taking that and I am tired of hearing it every time I go to the clinic. That
is every four to six weeks, go up, give blood, look at your arms, legs, your
elbow and whatever . . . but I am tired of the same old spiel about drugs;
Simon: I am not going to have anything that toxifies or gives me any
toxins;
And Harry: I have had AZT which I have told them what they can do
with. Hideous stuff. I go my way.
Another way in which HIV positive individuals were critical of the medical
profession concerned certain attitudes regarding medical and lay knowledge.
For instance, Jim, a haemophiliac, claimed that one of the main obstacles to
him coming to terms with his HIV positive diagnosis had been the attitudes
of many doctors ‘. . . sort of, “I am a doctor and you are the patient and I
know best, you haven’t got a clue”, there has been plenty of that over the
years at the hospital’. And a HIV positive gay man, Tony, objected to the
fact that some doctors would ‘only give you the information they want to
give you [because it made] their job easier . . . people can’t challenge the
doctor if they don’t have the information’. The failure to distribute informa-
tion was clearly highlighted in an incident described by Tony. In 1993 West
Midlands Health Authority published a manual entitled A Manual for You:
Living With HIV, which, as its title suggested, was a manual designed for
people living with HIV (Joyce and McNeile 1993). As is stated on its opening
covers, a free copy was available to all HIV positive people in the West
Midlands. The intention of the manual was ‘. . . to provide basic information
that will enable you to obtain more specific information or services when you
feel the need. By having access to information, you can start to take control’.
According to numerous reports by HIV positive individuals, however,
there were major problems with the dissemination of this document to the
readership it was designed for. For instance, on asking his doctor at his reg-
ular clinic why his HIV positive friend had not received a copy of the man-
ual, Tony was told that it was not the policy of the hospital to give the
manual out:
. . . he [the doctor] thinks it is very beneficial for the staff but not neces-
sarily for the patient and it is an excellent manual for the staff as a
training and educational resource but not for the patients . . . And when
you ask them why it is not good for the patients it is because and I quote
‘it gives them too much knowledge’. And it is like, ‘well surely to God
that is a good thing?’ . . . He said that if they have got the knowledge it
means they start questioning him and he knows what he is doing, they
don’t. All they see is something in black and white and they get a bee in
their bonnet and come running to him saying ‘you gave me this and you
shouldn’t be giving me this’.
This led to Tony’s further claims:
. . . they don’t give you that information, they don’t want you to know
any because information is power and you don’t challenge a doctor you
just accept what they say and . . . they are just ignoring people who exist
and they don’t want us to know things, they don’t want us to be empow-
ered, they want us to just sit there, go along and have our T4 counts done
regularly, take medication that they prescribe . . .;
. . . if we die, we die, we are just another statistic at the end of the day and
they don’t want to know us. They never get to know us, they don’t want to
spend time with you. It is just like ‘how are you?’ And it is like, have you
really got four hours and it’s like you have five minutes . . .
In summary then, the HIV positive individuals’ critique of the medical

profession typically involved issues regarding certain medical technologies
such as diagnostic measures and drug treatments, and states of knowledge
including uncertainty, lack of free availability of knowledge and the refusal
of certain physicians to recognise the value of lay knowledge.
Asserting experiential authority
The majority of individuals in this sample manifested evidence of a need to

counteract the medical dependency imposed upon them by HIV infection,
probably related to the fact that they belonged to the NLTSG, a self-help
group committed to the ideology of ‘empowerment’. Such empowerment
was expressed in a number of ways which are basically analogous to the
‘insider view’ of illness characterised earlier in this paper. More specifically,
they include a commitment and confidence in the experiential or ‘subjective’
knowledge of one’s own body and self, often related to rejection or scepti-
cism about the ‘objective’ knowledge of science, medicine and other ‘out-
sider’ or professional groups. In addition, the primacy of the body and
disease associated with the traditional biomedical model is downplayed,
just as the importance of individual control and ‘positive attitude’ is
asserted. Moreover, the emphasis on a multitude of ‘alternative’ forms of
‘treatment’ ranging from Reiki to homeopathy, all advocating a holistic

philosophy in which self-progression is viewed as integral to disease man-
agement, has the implication that psychological and social interventions are
valued, often in combination, or as a substitute for traditional drug treat-
ments. With specific regard to this sample, social interventions such as resi-
dential weekends, in which people who have been living long-term with an
HIV positive diagnosis meet up with others in a similar situation to share
information and to discuss their practical, emotional and psychological
problems, are seen as particularly important to the facilitation and develop-
ment of empowered individuals (see Davies 1995).
The prioritisation of the experiential knowledge of the long-term HIV
positive individual, in contrast to the perceived inadequate knowledge of
the medical profession, constitutes part of the ideology of the NLTSG, as is
evident in the following characteristic comment by Chris, a 41-year-old gay
man:
A lot of people I have met on this weekend are actually very, well, don’t
listen to, well, some people don’t go to doctors, I personally do, I need
something from that really, but you know, I think people’s attitude
towards their doctor, I mean I have learned that probably most of us
actually know more than the doctor . . . I sometimes feel a little sorry for
the doctors, you know, because we are going in, most times we know
more about our disease that the doctors do, they must feel really helpless,
you know.
And Harry conveyed the same message in a more antagonistic way:
I follow what my gut tells me . . . Basically I follow my own self progres-

sion and what that indicates I ought to do, whether it is a bottle of gin, or
a bonk on the heath, or being very contemplative. I don’t follow anybody
else’s rules . . . I want to find out for myself what goes on, I don’t give a
monkeys what the doctor says;
As did Jim:
. . . the hospital don’t like me questioning treatments and going my own

way . . .;
And Tony:
The doctor tells me not to smoke and drink but only I know when to
stop because I listen to my body . . . if my body says I’m knackered then
I’m knackered and that’s it . . .;
And finally Sean:

. . . the CD4 count may fall but that does not mean I am going to die
because “I will know when I feel ill, if I do become ill, I will know myself
and get to know my own body . . .
The belief in the authority of subjective knowledge is also evident in a

widespread commitment amongst the group to the power of ‘positive’
thinking and ‘positive attitude’, a typical example of which is provided
below:
I believe it is all the power of positive thinking . . . I first realised this

when I met a guy called James . . . and he was diagnosed and within a
year he was dead, and it was because he was constantly telling himself ‘I
am going to die, I am going to die’. And I was sitting there saying “you
are not going to die, not yet anyway” and it was just, his thoughts were
so different to mine . . . and here I am eight years on and within the first
year he was gone and he is not the first person I have seen it in. Because I
was so involved in Open Door (a self-help organisation) you used to see a
lot of people come through the door, you sort of like weighed it up and
you’d think ‘yes, he will be around for a while, but that one won’t’.
Because it is all in the thought, positive thinking . . .
The residential weekends are seen as instrumental in the promotion and

facilitation of such ‘positive thinking’ because they provide evidence, in the
context of the massive loss and bereavement surrounding many HIV posi-
tive individuals, that people can live well and healthily with the diagnosis.
Rejection of the sick role:
Rejection of social ‘obligations’

The description above illustrates how this group of HIV positive individu-
als reject dependency imposed on them by medical authority. The second
way in which they reject dependency is by rejecting some of the perceived
social ‘obligations’ imposed on them by HIV disease. This will now be doc-
umented in more detail.
As is clear, the prioritisation of the authority of ‘subjective’ knowledge
and competence over and above that of medical intervention frequently
takes on a tone of rebellion, e.g. ‘I go my own way’; ‘I don’t follow any one
else’s rules’; ‘I don’t give a monkey’s what the doctor says’. This theme of
rebellion against authority is important because it is not limited simply to
rebellion against medical ‘rules’, but is linked to a more general rebellion
against societal ‘rules’ (Crossley 1997b). Parsons theorised that the ‘posi-
tive’ exemption from social responsibilities and duties associated with occu-
pation of the sick role had a ‘negative’ correlate insofar as the patient was
expected to accept a degree of dependency which, in turn, involved a
removal or suspension of certain ‘rights’. The particular rights affected

would depend upon the specific nature of the disease. For instance, in terms
of a contagious disease such as chicken pox the individual would temporar-
ily ‘lose’ the right to move freely amongst others because s/he has a ‘duty’
or an ‘obligation’ to minimise the spread of infection. According to this the-
ory the HIV infected individual, having accepted exemption from certain
social duties and responsibilities, would be correlatively expected to relin-
quish certain ‘rights’. The affected rights would be those associated with
risk of transmission. As is now commonly known the virus is transmitted
through contaminated bodily fluids, the main risk of which derives from
contaminated needles and sexual intercourse.
I have already suggested that the advocacy of the subjective or insider view
of illness, concerned as it is with the (sometimes partial) rejection of depen-
dency and the promotion of empowerment, is frequently associated with the
rejection of medical and societal ‘rules’. This is particularly apparent in the
rejection of ‘obligation’ or ‘duties’ in relation to sexual and reproductive
rights. Within the NLTSG, as part of the ideology of empowerment, there is
a commitment to the idea that HIV positive individuals have rights to sexual
and reproductive freedom equal to those who are not infected. It was by no
means infrequent in the interviews for HIV positive individuals, in a con-
scious move against societies’ fear of contagion (a fear internalised by HIV
positive individuals), to anticipate and assert their freedom from such fears
and any ‘obligations’ associated with them. For instance, in response to the
question ‘What do you do to take care of yourself?’ one gay man, Terry, who
worked as a prostitute, emphasised that ‘lots of sex’ was important to him
and that the only way in which his status had affected his sexual relationship
with his partner was that he had to make sure:
I don’t sleep without my knickers on when he is in bed because I know I

will get very, very randy in the middle of the night . . . because I am a
randy bugger . . . if I have had a few drinks . . . I won’t think, oh I’ve got
to put another one (condom) on . . .
A similar reticence was apparent in the remarks of an HIV positive

haemophiliac, Jim:
If ever my libido goes out of the window . . . I am going to go to pieces

because I won’t know what to do with myself . . . Condoms take a little
of the spontaneity away from things . . . we have had a few occasions
when we have got carried away . . . and we have worried for a few days
but . . .
More explicit examples of the attempt to reject societal fears and the
demands associated with such fears are evident in the following examples in
which the need ‘to take back one’s sexuality’ is seen as imperative to the
process of re-gaining control over one’s own life. Harry, for instance, told
the following story:
I remember one day I was at Open Door, I said, ‘I must take back my
sexuality’ and I borrowed someone’s leather jacket and I went up to the
Heath and I stood by a tree and I would not leave that tree until I had got
fucked rotten, to put it bluntly. I had to take it back, take the power back
to me, no let the doctors or anybody else, there are plenty of people who
say, you mustn’t, you drop it all now (‘. . . there was a lot of guilt associ-
ated and fear, “you don’t do this and you don’t do that”’) . . . Well, you
tell Jo Bloggins at the age of 30 that he can have no more sex, he can
have no more company, he can have nothing, see if he can deal with it.
They can’t and I have had to deal with it by taking the power back to me
. . . And through that I have become much stronger, it is not a negative
thing, it is a very positive, this is me, who I am . . .
Similarly, another gay man, Sean, claimed that he had never lost his sex
drive and that, in fact it had actually got stronger as he ‘denied’ himself
because of his fear of contaminating other people. But now, he has ‘. . .
started feeling that I have got a right to have a sexual relationship with
other people, with willing partners . . . I am number one at the moment . . .’
The notion of having a ‘right’ to sexual freedom was expressed in a num-
ber of ways and when pushed regarding the issue of responsibility towards
other people and the possibility of transmitting infection, the most common
response was one in which people reiterated the empowerment ideology
that their main responsibility consisted of a responsibility to themselves
rather than to other people. For instance, the following comments by Paul
and Gary, both gay men, were typical: ‘It is my obligation to protect
myself, it is not my obligation to protect him’; ‘If I look after me I am auto-
matically taking care of the other person and I can’t take responsibility for
another person’. The commitment to take care of oneself and not to bear
greater responsibility in the context of sexual encounters resulted in
Warren’s decision not to make explicit the fact of his HIV positivity to
potential sexual partners because it is ‘just assumed’ that everyone on the
gay scene is HIV positive anyway. Steve rationalised his failure to inform a
man whom he had sexual relations with in the following way:
. . . it turned out he didn’t realise I was positive and got really panicked
when he realised . . . I got really angry about that . . . he was so fucking
ignorant . . . heavily into scatia, but he never had Hep B vaccinations . . .
that’s the best way of getting Hep B . . . he went very quiet and then
said, ‘the things we have done, I mean, I couldn’t have caught anything
could I?’
The anger expressed by Steve about his partner’s ignorance concerning the
dangers incurred by unprotected sexual activities, is part and parcel of his
rejection of the notion that he bear any responsibility for the transmission
of infection.
The rejection of socially expected restrictions imposed upon the individ-
ual by HIV infection takes on a rather different form amongst HIV positive
heterosexuals. Whereas gay men tend to react against a sense of ‘obligation’
or ‘duty’ by refusing to relinquish their sexual freedom, this reaction some-
times manifests itself in a refusal to relinquish reproductive rights within the
heterosexually infected population. For instance, the HIV positive haemo-
philiacs in this group were very angry that the Haemophiliac Treatment
Centres generally expressed an unwillingness to help them to have children.
In one case although the treatment centre had been very supportive in help-
ing James, a HIV positive haemophilic man and his wife to have a child in
1988, when they returned a year later to try and have another child, the
centre were ‘very unsupportive . . . and had the attitude ‘you should be
grateful’ sort of thing’. When another couple, Steve and his wife, went to
the hospital because they had met other HIV positive infected couples who
were having children, ‘we thought, well, if they can have them, why can’t
we . . . [the hospital] . . . sort of said, not in so many words, you have got no
chance . . . you know, you’re going to be dead in a couple of years anyway .
. .’ According to Steve, however, since 1994 things have changed and the
hospital are now helping him and his wife to have a child. And so they
should, according to these HIV positive heterosexuals because, as James
vociferously asserted ‘. . . we have the right to have bloody children . . . I
get very angry about this . . . it is our decision . . .’
A different view, however, one at odds with the dominant ‘rights’ per-
spective expressed in the NLTSG, is evident in the following comment by
Alcia, a 39-year-old HIV positive woman:
I think he [partner] wants part of me to be carried on . . . but to me that is

not the right motivation [to have a child] really . . . I know the risks . . .
are quite good . . . but it is not a risk I am prepared to take . . . at the end
of the day . . . there are plenty of children really . . . for me the experience
of being a mother with the whole commitment for life, that is one of the
things I feel I have lost out on . . . I think what I wanted to experience is
breast feeding and giving birth and being pregnant and I think, well,
that’s not fair for me to . . . experience those feelings for the sake of a
child that may be infected. I think it is outrageous really . . . I do have
difficulties with other women who make the choice to have children, I do,
I think, well, what is it all about, why are they doing it? . . . most of it is
pretty selfish . . . people generally don’t think about it enough . . .4
(Crossley 1998b, forthcoming).

Some ambiguities: empowerment and underlying dependency
Radley characterises the situation of the chronically ill patient as one which
is more complex than the ‘exemption’/‘obligation’ model associated with
Parson’s concept of the ‘sick role’. This is because there is a continuous
struggle amongst the chronically ill between ‘doing too little and doing too
much’, between the demands of the body and the demands of society.
Although this struggle is manifest amongst this long-term HIV positive
sample it seems apparent that the empowerment ideology amongst the
group is one which favours a rejection of the passivity of sickness, thus
rejecting the obligations imposed by such passivity and demanding rights
equal to the rest of society. In one sense, then, this group demand a ‘nor-
malisation’ of their HIV positive status in order that they be accorded equal
treatment with other non-infected societal members. This demand, how-
ever, raises a number of ambiguities which I now propose to discuss. In
particular, in relation to specific themes embodying the ideology of empow-
erment and the insider view of illness more generally, it is suggested that
these approaches neglect certain structural and functional elements of the
HIV positive individuals’ situation, precisely the kind of features Parsons
sought to emphasise.
In the first place the insider perspective, embodied in the HIV positive
individual’s prioritisation of subjective or experiential knowledge in terms
of self-care, management and treatment of HIV infection, tends to exagger-
ate his/her independence from the physician. Despite vociferous proclama-
tions to the contrary, HIV positive individuals remain tied in the most
fundamental fashion to the progress of medical knowledge and technique;
their life is literally dependent on such knowledge. This is painfully obvious
in the contradictory ways in which, in one breath, the HIV positive individ-
ual decries the value of CD4 counts, drug treatments and the ignorance of
physicians, and in the next, waxes lyrical on the state of his blood cell
counts, state of the art drug treatments and the fact that physicians are
intentionally keeping knowledge from patients (whilst, simultaneously,
physicians are accused of being ignorant about the HIV situation).
Such contradictions can be understood by a greater appreciation of the
psychological and emotional nature of the HIV positive individual’s rela-
tionship and reactions to the doctor. In particular, like any other human
being, the HIV positive individual tacitly makes use of the basic psychologi-
cal mechanism of projection – the act of resolving personal worries, fears
and vulnerabilities (in this case mainly about dependency and dying), by
mentally passing them on to some ‘other’ person or group external to the
self. In a recent paper, building upon Crawford’s (1994) work on the inex-
tricable connections between contemporary conceptions of ‘self’ and
‘health’, I have shown that the construction of an ‘empowered self’ amongst
the same group of HIV positive individuals discussed in this paper, neces-
sarily entails the construction of various ‘others’ who bear the brunt of the
projected fears of the HIV positive ‘survivor’ (Crossley 1997a). Examples of

such others included ‘negatively-minded’ HIV positive individuals and the
complex of orthodox medicine, doctors and/or drugs. These others are per-
ceived as sources of pollution and contamination to be avoided, because
they have the potential to ruin the ‘success’ of the ‘survivor’. I concluded, in
accordance with previous research on victimisation and trauma (see Taylor,
1989), that such processes of projection are frequently adaptive insofar as
they serve to minimise feelings of vulnerability and restore some sense of
order to the world.
Another way in which dependency underpinned the empowerment per-
spective, became apparent is some peoples’ reactions to the residential
weekends held by the NLTSG. It could be argued that this group, whose
identity and membership basis revolved around HIV infection (albeit ‘sur-
viving’ with HIV infection), somewhat paradoxically exacerbated depen-
dence upon the very thing that was being fought against, i.e. dependence on
the disease and diseased perceptions of self. For instance, a number of
people rejected the ‘master status’ of HIV infection and expressed the need
to be treated not as a person with HIV infection but as a person in their
own right. Residential weekends such as those provided by the NLTSG
may bring about over-involvement with other HIV positive individuals and
a loss of independent identity, as was evident in the following comment by
Darren about a previous weekend:
. . . there were all these people from down in London who were people
who had lived in a gay ghetto, gay scenic life and they were all ‘Hi I’m
Steve I am HIV’ and I can’t do that because I am James Smith, I am
James Smith first and then I am Anglo-Australian and then I am HIV. It
is one part, it is just, I am not a HIV person, I can’t be, I was a person
before HIV and if I survive I will be a person after . . . And I refuse for
that to be the be all and end all of me . . . I want to get to know people
first, even before they know I am gay, let alone HIV. I am afraid it is
second on the list.
It seems therefore that the promotion of psychosocial interventions like the

residential weekends of the NLTSG, bear an important ambiguity insofar
as they may actually encourage a greater ‘disease-identity’ dependency than
would have been the case if traditional medical approaches had been
utilised.
This disease-identity dependency is also apparent in the way in which the
residential weekends, like other self-help group forums, serve as a way of
socialising people into learning how to live with their illness. Not infre-
quently this involves practical advice on how to get a ‘good social worker’
and how to ‘claim as much benefit as possible’. As I have already pointed
out the majority of people in this group although largely asymptomatic,
voluntarily gave up work and the following comments highlight the way in
which self-help groups may be instrumental in encouraging such financial

dependency. For instance, Sean told the following story:
I was ill one day, I found it very difficult to sleep, you know, getting up
and I phoned up my work and I said ‘I am going to be late’ because I was
very conscientious, and their attitude was appalling and I thought, I
don’t have to do this . . . so I decided then and there after having all these
people at the groups, money advisor and that sort of thing, ‘you must think
about it’. I suddenly said yes, I am thinking about it now . . .;
Similarly, John reported the following influences:
Various people said, ‘well why don’t you give up work and get all these
benefits?’ And I said ‘well I’m perfectly fit and healthy, I shouldn’t really
be getting benefits’. I went to the Terrence Higgins Trust and they gave
me the form to fill in which said ‘How often do you need someone to cut
your food and how many yards can you walk?’ I thought, well this is a
load of rubbish, I can’t possibly lie like that, so I carried on looking for a
job and eventually my doctor sent me to _____, at _____ Action for the
Disabled and said go and see this benefits advisor, who, instead of giving
me the form to fill in just sat there and filled it in himself and . . . it came
to the part about how far can you walk and I told him I was perfectly
alright and I felt a bit guilty about going for it, and he said ‘oh, don’t
worry about that one day you might need it and how do you feel on your
worst days?’ I said ‘well even my worst days I feel alright’. And then he
said ‘well how far can you walk?’ I said ‘well I go on 12 mile hikes and I
have just climbed Ben Nevis for charity’ and he said ‘alright 80 yards’
and I said ‘80 yards, I can’t lie like this’. Anyway, he filled it all in and he
got me all the benefits so, of course, I stopped working . . . Because I
receive Higher Level Disability Allowance I also got an orange badge for
my car . . . I felt quite sick to think I am registered disabled and I thought
well, you know, there is nothing wrong with me.
In addition to this ambiguity between the empowering ideology of NLTSG

and the encouragement of financial dependency, a number of HIV positive
individuals also pointed out that the residential weekends themselves are
funded by the National Health Service and that other groups such as
survivors of breast cancer, people living with multiple sclerosis, leukaemia
etc. are as justified as those infected with HIV in their need for such services
but are unlikely to be provided with them due to disproportionate health
service funding (in favour of HIV/AIDS).
There also seems to be a neglect of certain structural factors regarding
the blanket advocacy of the ‘right’ of HIV positive individuals to have chil-
dren, and the suggestion that this constitutes an individual choice and an
individual decision. In a purely psychological sense of course, this decision
does rest with the individual couple. In the case of people in this sample the
main risk derives from transmission from HIV positive haemophiliac to his
partner and then through vertical transmission, from mother to child
(between 20 per cent and 60 per cent depending on geographical location
according to Squire (1993); or between 13 per cent and 40 per cent accord-
ing to Richardson (1993)). However, as the HIV positive woman, Alicia,
quoted earlier in this paper, suggests, it could be argued that risk of trans-
mission is not the ‘only’ problem to consider. Even if mother and child are
not infected with the virus there is certainly a very high probability that the
father may die in the very near future. The associated psychological, emo-
tional and financial implications of bringing a child into such a world by
choice suggest that the reduction of reproductive decisions to the status of
‘individual rights’ is, once more, telling only half the story.
Thus, in relation to the advocacy of a disease-identity dependency, the
encouragement of financial dependency, and the advocacy of reproductive
choice amongst the NLTSG, the importance of Parsons’ concept of ‘profes-
sional concern’ for the preservation of the social order once more becomes
apparent. The absence of a ‘general trustee’ of health interests fails to min-
imise the existence of illness and disability, serving rather as models of
advocacy and perpetuation.
Concluding remarks
Parsons argued that the sick role and the associated relationship between
doctor and patient were functional to the restoration and preservation of
order within the social system, comprising part of his analysis of medicine,
as one profession amongst others, working in the service of social control.
The prioritisation of the physician in the care and management of illness
had the implication that the formation of sick people within a ‘sub-culture’
was avoided. This facilitated the preservation of social order insofar as the
healthy were insulated and isolated from the sick who constituted, in
Parsons’ terms, both a motivational and bacteriological threat. This per-
spective has been criticised because it purportedly assumes an ‘outsider
view’ of illness which uncritically accepts the authority of medicine,
assumes that the social control function of medicine works for the good of
society as a whole and fails to take account of the fact that society is made
up of competing groups with competing interests and unequal opportuni-
ties to share in its rewards.
These criticisms of Parsons’ theory are extremely important, and cer-
tainly, in the light of changes in the National Health Service over the last
decade, any notion of medical decisions being made on the basis of humani-
tarian principles such as ‘the public good’, seem hopelessly naive. The
increasing need of doctors, administrators and managers to work within the
language of the market and contract-culture, militates against Parsons’
seemingly utopian ideal of the ‘independent’ doctor making decisions

purely on the basis of clinical competence and skill.
Having said that, the aim of this paper has been to highlight some of the
problems and contradictions associated with the alternative ‘insider’ view
of illness. Although Parsons should be criticised for accepting the assump-
tion that medicine works for the good of society as a whole, as a corollary,
it is also important to highlight some of the contradictions embedded
within the popularised discourse of empowerment which is increasingly
becoming an institutionalised feature of many consumer and patient
groups.
Parsons’ arguments that the emotional vulnerability of the patient mili-
tates against rational judgement and action, is entirely pertinent to the
group discussed in this paper. This is not to say that patients should simply
conform passively to ‘doctors orders’. However, it is a position which
appreciates the emotionally laden nature of illness experiences and there-
fore cautions against a naive appropriation of the ‘insider’ perspective. In
particular, it is a perspective which, whilst facilitating an understanding of
the projective psychological dynamics underpinning the ‘oppositional’
stance of the HIV positive individual, also appreciates the need to ‘go
beyond’ this individual perspective and take account of the potential impli-
cations for the wider ‘social body’.
As recent critics in both the US and Britain have argued, from the very
beginning of the AIDS crisis the possibility of producing an adequate
response to a potential world health crisis has been hampered and plagued
by the prioritisation of individual civil liberties over the needs of society
more generally (see Fumento 1990, Hodgkinson 1996, Scheper-Hughes
1994). In Scheper-Hughes’s words, is it possible ‘to control an epidemic
such as AIDS in a purely democratic fashion . . . [and if not is the] space of
death that is created ethically defensible?’ (Scheper-Hughes 1994:101).
From a purely practical point of view (i.e. in terms of preventing HIV
transmission), is a more social ethic of care and responsibility required?
Some critics would be entirely sceptical of calls such as Scheper-Hughes’s
for a more ‘social ethic’ of care and responsibility (one which is obviously
restrictive of individual civil liberties) because they would be uncomfortable
about the implicit policy implications of such a stance. And clearly, if this
paper seeks to advocate such a perspective, the same scepticism would hold
for the arguments presented within it. In anticipated response to such a cri-
tique, however, I would argue that the aim and thrust of this paper is not in
any way to pedal the advocacy of a restriction of sexual, reproductive or
other rights on the part of HIV positive individuals, but simply to highlight
some of the inherent and implicit contradictions of the increasingly popu-
larised discourse of empowerment – a discourse which frequently encour-
ages a claim to rights without any corresponding notion of duty and
responsibility. Of course, the ambiguities of this discourse have widespread
social implications and extend way beyond the field of HIV and illness. This
paper has tried to use research with HIV positive individuals as a means of
exploring the ambiguities and dangers of this discourse and its seemingly
naive appropriation by advocates of the insider view of illness. Its aim is to
open up a debate regarding the limitations of the empowerment discourse
rather than to impose restrictions on individuals.
Address for correspondence: Michele Crossley, Edge-Hill University College,
Department of Psychology, Centre for Studies in the Social Sciences, St
Helen‘s Road, Ormskirk, Lancashire, L39 4QP
e-mail: crosslem@staff.ehche.ac.uk
Notes
1 Chronic diseases are degenerative diseases that develop and persist over time.
About two-thirds of all deaths in Britain are caused by three chronic diseases:
heart disease, cancer and stroke (HMSO 1995: 131).
2 This is a very big conditioning clause and as we shall show in more detail with
regard to the experience of living with a long-term HIV positive diagnosis, a con-
dition which militates against the patient gaining independence from the physi-
cian and accounts for much of the antagonism intrinsic to the structure of the
doctor-patient relationship. There is always the hope or dream that a cure will be
forthcoming.
3 Using Gallagher’s (1974) conception of ‘health as capacity’. Health is regarded
as a capacity to function ‘normally’, e.g. being able to engage in ordinary day to
day activities such as work.
4 Green (1994) also examines the consequences of a HIV positive diagnosis on the
reproductive decision-making of 39 men and women. Overall, she found the
majority of her sample decided not to have (more) children but a minority (about
a third), had had a child or were intending to do so. Green links these individu-
als’ motivations to reproduce within the context of ongoing intimate relation-
ships. For instance, in most cases, she argues, the main motivation allegedly
comes from the HIV positive individual’s partner who wants a baby, rather than
from the HIV positive individual per se.
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Sociology of Health & Illness Vol. 20 No.4 1998 ISSN 0141–9889, pp.

‘Sick role’ or ‘empowerment’? The ambiguities

Abstract This paper addresses the relevance of Parsons’ concept of the

neously remaining dependent in some of the most crucial, fundamental

Parsons’ concept of the ‘sick role’

them. The lack of medical knowledge and competence concerning how to

trustee’ of the health interests of the general population, working on the

Sample and Method

study consisted of a combination of qualitative and quantitative

As has already been highlighted, the temporal structure of particular ill-

of AIDS increases over time with 12 per cent of HIV-infected homosexual

Rejecting the sick role:

Questioning medical authority: asserting experiential authority

have any problems I have wonderful doctors and a wonderful hospital’

Many other survivors expressed similar beliefs, repeatedly referring to the

I am tired of being asked to reconsider various drug treatments, recon-

This led to Tony’s further claims:

In summary then, the HIV positive individuals’ critique of the medical

Asserting experiential authority

The majority of individuals in this sample manifested evidence of a need to

‘treatment’ ranging from Reiki to homeopathy, all advocating a holistic

And Harry conveyed the same message in a more antagonistic way:

I follow what my gut tells me . . . Basically I follow my own self progres-

. . . the hospital don’t like me questioning treatments and going my own

And finally Sean:

The belief in the authority of subjective knowledge is also evident in a

I believe it is all the power of positive thinking . . . I first realised this

The residential weekends are seen as instrumental in the promotion and

Rejection of the sick role:

Rejection of social ‘obligations’

removal or suspension of certain ‘rights’. The particular rights affected

I don’t sleep without my knickers on when he is in bed because I know I

A similar reticence was apparent in the remarks of an HIV positive

If ever my libido goes out of the window . . . I am going to go to pieces

I think he [partner] wants part of me to be carried on . . . but to me that is

© Blackwell Publishers Ltd/Editorial Board 1998

Some ambiguities: empowerment and underlying dependency

projected fears of the HIV positive ‘survivor’ (Crossley 1997a). Examples of

It seems therefore that the promotion of psychosocial interventions like the

which self-help groups may be instrumental in encouraging such financial

Similarly, John reported the following influences:

In addition to this ambiguity between the empowering ideology of NLTSG

seemingly utopian ideal of the ‘independent’ doctor making decisions

Bloor, M. and Horobin, G. (1975) Conflict and conflict resolution in doctor-patient

© Blackwell Publishers Ltd/Editorial Board 1998

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