Proceedings of the 2nd Annual Qualitative Methods Conference: "The Body Politic"
3 & 4 September 1996, Johannesburg, South Africa

PART FOUR



Applications and special contexts

Dangerous bodies:

surgical decision-making in BRCA1 mutation carriers



Nina Hallowell

Centre for Family Research, University of Cambridge, CAMBRIDGE, U.K.



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Contextual comments:

My paper differed from many of the other papers I heard at the conference to the extent that it focused more on individuals' perceptions of their bodies, or at least their at-risk body parts, whereas the other papers I went to seemed to focus more on the body from the perspective of the other. In terms of how my work fits in with research in general, the following: There are no published studies of the psychosocial implications of prophylactic surgery for women who have a family history of these cancers. There is only one ongoing study of prophylactic mastectomy in the UK and a couple in the US. At the moment there is no research on prophylactic oophorectomy; I am trying to get funding to do it. In terms of studies of therapeutic surgery there are very few qualitative studies of the implications of mastectomy and hysterectomy.

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Between 5 and 10% of cases of breast and ovarian cancer are attributed to an inherited disposition. The risk management options for women who are at increased risk of developing these cancers, because of their family history, include screening and prophylactic surgery - oophorectomy or mastectomy. This paper reports preliminary findings of a an interview study of women who have attended genetic counselling because of a family history of breast/ovarian cancer. Case studies of premenopausal women currently considering the surgical option and women who have undergone, or rejected, mastectomy/oophorectomy are presented. It will be argued that decision-making about prophylactic surgery involves consideration of the implications for social, personal and sexual identity.



Between 5 and 10% of cases of breast and ovarian cancer in the United Kingdom are caused by an inherited predisposition. It is estimated that carriers of BRCA1 mutations have an 85% lifetime risk of developing breast cancer, whilst their risk of developing ovarian cancer may be 60% or higher (Easton et al., 1995). At the present time women who think they may be gene carriers because they have a family history of these cancers are referred for genetic counselling, where their risks of being a mutation carrier and developing cancer are calculated and risk management options are discussed. There are two ways in which high risk women can manage their risk of developing these cancers. Firstly, they can have their body annually screened for signs of breast and/or ovarian cancer - they can have a vaginal ultrasound plus CA125 blood tests or mammography plus a breast examination, respectively. These screening options have both medical costs and benefits. The costs are complex. Firstly, there is no evidence that screening is effective in high risk groups; cancers may be missed, or occur during the interval between appointments. Secondly, some of the procedures are themselves risky, for example, there is a high false positive rate, particularly in ovarian screening, and this may result in women having to undergo unnecessary exploratory operations. Similarly, the use of x-rays in mammography carries with it a cancer risk which may be increased in certain high risk individuals. The benefits are simple, screening may pick up cancers at an early stage when the prognosis is good, thus reducing the risk of dying from cancer. The second risk management option available to these women is to take steps to decrease cancer risk by eradicating the sites where cancers may develop. These women can have prophylactic surgery - a bilateral oophorectomy or mastectomy. The benefits of this option are fairly obvious, removal of these tissues decreases the risk of cancer. However, as it is impossible to guarantee the removal of all the ovarian and breast tissues there is a residual risk of developing cancer following surgery, and at the present time nobody knows how high this is. With regard to the costs of prophylactic surgery there are medical risks associated with both procedures, such as anaesthesia, post-operative complications and problems with hormone replacement therapy or breast implants. Furthermore, and perhaps more importantly, it is widely acknowledged that there maybe psycho-social costs of adopting this form of risk management. Using data collected during an interview study of high risk women who had made or were in the process of making decisions about prophylactic surgery this paper presents an analysis of women's perceptions of the psychosocial implications of this form of risk management. The data reported below were collected during a prospective study of women attending genetic counselling because of a family history of breast and/or ovarian cancer. This is part of a larger project which explores lay explanations of inheritance and the influence of this pre-existing knowledge upon individuals' understanding of the Mendelian explanations of genetics that are provided during counselling sessions. The issue of prophylactic surgery was not one of the areas we were specifically investigating in this project, however, it often arose during discussions of women's experiences of counselling, and as the project progressed I became very interested the way these women perceived this option and the questions it raised for them. This paper is based upon data gathered in face-to face interviews with 41 women who had attended genetic counselling 6 weeks earlier, and one woman who had had a prophylactic mastectomy 18 months earlier. The mean age of the sample was 40 years (range 22-59 years). None of the participants were being treated for breast or ovarian cancers or had had cancer in the past. Only one women had attended genetic counselling for cancer before. Nineteen women had a family history of breast cancer, 13 ovarian cancer, 8 breast and ovarian cancer and 2 breast and either uterine or stomach cancer. It is supplemented by data gathered during observations of genetic counselling sessions and in semi-structured telephone interviews with 35 of the original sample 12 months after they visited the clinic. The face-to face interviews were fairly open-ended, but we made sure that the following themes were addressed: experiences of counselling, family history, risk perception, risk management, understanding of inheritance and general health behaviour. The follow-up telephone interviews were semi-structured and focused upon satisfaction with genetic counselling and risk management during the interim period. A grounded approach was used in the analysis insofar as emerging themes were identified in the women's accounts and these were subsequently refined through a process of comparison. Discussions about risk management during genetic counselling None of the participants either had or were offered genetic testing during the course of this study. Thus, risk management recommendations were based upon the counsellors' estimation of a woman's risk which was calculated on the basis of the type of family history she presented. With three exceptions all women were recommended to continue with or start screening programmes. Surgery was discussed in thirty four consultations and in nine of these women were asked to seriously consider having a prophylactic oophorectomy in the future. Discussions of mastectomy were much less directive, counsellors stressed that they could not make recommendations about this option. Risk management following counselling When we interviewed them six weeks after counselling, with one exception, all the women intended to adopt some form of risk management and seven intended to obtain a referral to discuss surgery (3 mastectomy and 4 oophorectomy). With two exceptions, all the women we interviewed twelve months later had either undergone or arranged some form of screening and four had had a prophylactic oophorectomy plus hysterectomy. Two women had talked to a breast surgeon about prophylactic surgery but had decided not to proceed any further for the present.

Women's perceptions of the surgical option? There was a difference in the way that the counsellees perceived discussions of oophorectomy and mastectomy during counselling. Reactions to the suggestion of oophorectomy were much more muted, and none of the women were surprised that this option had been discussed. Indeed, many of those who had been recommended to think about having this operation said they would consider it when they were older, once their ovaries had served their purpose. Many of the women acknowledged that there comes a time when their ovaries would cease to function, and at that time there was less reason to keep one's reproductive organs. Prophylactic mastectomy, on the other hand, was perceived as a much less obvious course of action. Many of those who had not heard of this before they came to counselling were shocked that the counsellor had mentioned it. As one thirty five year old woman said: " I thought that was quite bizarre because I would never dream of doing that. Never. I mean that to me is quite abhorrent, it really is. ... - It's like cutting your legs off in case you're going to get run over by a train, which is crazy." (GC07) Those who were aware of this option before the consultation, including those had come with the intention of discussing prophylactic mastectomy, acknowledged that it was a "big step" or regarded it as a "very drastic" or "radical" way of managing risk.

Reasons for rejecting or having prophylactic surgery For nearly half of the sample oophorectomy or mastectomy was not regarded as a viable option. These women rationalised their rejection of surgery in three ways: Firstly, - it was perceived as leading with the negative. The view that " if its not broke don't fix it" was frequently repeated. Many women said that removing healthy tissue was not acceptable or that it was tempting fate, they said they were they were healthy now but might not be as a result of surgery. Some women observed that even if one had breast cancer one would not necessarily have a mastectomy, therefore to remove healthy tissue was just overreacting.

A second contrasting theme emerged in the interviews which can be described as defeating the object of the exercise. Some women viewed cancer as ultimately uncontrollable. Thus, prophylactic surgery was perceived as a waste of time. These women did not believe that it would prevent them from getting cancer, they reasoned that following surgery the cancer would just develop somewhere else. As a twenty five year old woman said: "She did say about having my breasts taken away completely, but to be honest I think that's defeating the object if I walk round with no tits, you don't need to. ...If you're going to get it, it'll only come up somewhere else because it's one of them things. Cancer's not a thing, it's not like a cold. You've got a chance of getting it or you won't. It's either there or it's not. Now, if it don't come up in the breast and there's nowhere for it to come up, it will come up somewhere else and it won't be as easy to find." (GC26) Finally, some women talked of the social and financial costs of surgery, the fact that having an operation and the subsequent convalescence would interfere with their role as wife, mother and/or breadwinner. These women felt that their social obligations meant that they just could not, rather than would not, consider this option.

Two main reasons for undergoing prophylactic surgery were described by those women who were either currently making a decision to proceed with prophylactic surgery or who said they would seriously consider surgery in the future.

Firstly, many of the women who came to counselling talked of their obligations to others to find out about their risks and do something about them. For some women undergoing prophylactic surgery was seen as the only way of fulfilling these obligations, As a forty two year old woman who was considering a mastectomy said: " I feel a terrible sense of responsibility towards my young children and I'm virtually willing to do anything, if it really would guarantee there wouldn't be a problem" (GC 33) Secondly, the women who were willing to consider this option perceived themselves to be in great danger - they believed they would definitely develop cancer at some time thus, surgery was seen as removing the fear of cancer, as giving them more of a chance. As a 23 year old woman who was also considering a mastectomy observed: "Yes, you know, it is radical but if it takes away that fear, then that can only be a good thing. Because otherwise the fear will get you in the end." (P11) Similarly, a 36 year old woman who had a hysterectomy following genetic counselling said: "Well I knew it was a big operation, but I knew that by having it that would take away that fear, the fear of getting cancer there" (GC25) In addition, some women talked about other benefits of oophorectomy and hysterectomy namely, the fact that they would no longer menstruate or that the operation would relieve current gynaecological problems. As a twenty nine year old woman said, referring to her heavy periods, "...as far as I'm concerned I'll be glad to see the back of them". (GC29 ) The implications of prophylactic surgery Women who were considering prophylactic surgery and those who were not, talked of the negative implications or costs of this form of risk management. Firstly, when talking about mastectomy many women talked of the problems with breast reconstruction. Some were so worried about breast implants that they said that if they ever had to seriously consider this option then they would not have their breasts reconstructed.

The onset of menopause post-operatively was perceived as the main cost of oophorectomy. All women irrespective of age or parity acknowledged that because oophorectomy results in the immediate cessation of fertility it was only a viable option if a woman had completed her family, all said that the decision to have this operation would be much more difficult if that was not the case. As one thirty six year old woman said following her hysterectomy: "I think if it had been ovaries pre having the kids I'd have felt really differently, now I couldn't care less about my ovaries."(GC25) Age appeared to be an influential factor in how the other side-effects of the menopause were perceived. Women in their early to mid forties were less worried about entering the menopause. They had all completed childbearing so fertility was not an issue, and all had a greater familiarity with the effects of menopause. For this group the costs were seen as the physical side effects, for example, potential weight gain and regulating Hormone Replacement Therapy. The younger women, those in their twenties and thirties, were much more negative about the menopause. Many said that they were worried that they would age prematurely and become "an old woman " if they had an oophorectomy. In contrast to the older women younger women focused upon the psychological side effects of menopause.

Thus, the fear most frequently expressed by this group was that having this operation would have a negative effect upon their personality, many thought they would just have permanent premenstrual tension as a thirty one year old woman who had decided not to have an oophorectomy explained: "...'cos I talked with [my husband] about it and I said to him, "you know, when I'm pre-menstrual I' m a bitch, I'm such a cow, I'm awful to the kids, for 48 hours when I ovulate I'm so awful to live with - if I had to have both of my ovaries removed would you still love me while my hormone replacement was being sorted out?" And we talked for hours about that because that was one of the things that frightened me, if they took my ovaries out I would go into immediate menopause ... And that really frightened me, that I would be so difficult to live with, I would put stress and pressure on my family." (GC01)

The view that menopause resulted in personality change, or even madness, was frequently voiced by these younger women they talked of people they knew who had become "unbalanced" following the menopause as a twenty seven year old woman said: "I've seen a few people go through the menopause and some of them it's sent completely off the rails." (GC17) Finally, women talked about the implications of prophylactic surgery for gender identity and their image of themselves as a sexual being. Both breasts and ovaries were described as "womanly bits" and losing them was perceived as a threat to one's femininity. A 29 year old woman taking about the loss of one's ovaries and uterus said "...a lot of people think they're not part woman if these things happen to them " (GC22) Whilst another woman who had undergone a bilateral prophylactic mastectomy at thirty nine years said: "It felt very threatening to be a woman with no breasts, it really did I think, before I had it done." (GC47) The ovaries' role in defining gender identity was seen as bound up with their reproductive and hormonal functions - the ability to reproduce was perceived as part of being a woman. thus the feminine body was seen as related to the maternal body. A forty one year old woman described her feelings about her ovaries as follows: "I like that feeling in there. I know they're inside me, and I like it there, and I like the eggs being there. I like that, it feels very womanly." (GC47) A thirty one year old woman expressed similar sentiments : "You have your ovaries, and they are for producing eggs to make babies, and if they're wasted every month that's part of nature's cycle. But some women, when they have hysterectomies have terrible sadness because they think, oh well I'm not a full woman any more because I haven't got a uterus or a cervix or ovaries, and it does cause people emotional damage." (GGO1)

The ovaries role in producing hormones was also seen as crucial in preserving gender identity as a thirty one year old woman said about ovaries "... they give you all the hormones that you need and you are a woman...". (CO) Prior to having a hysterectomy one thirty six year old woman said "... you don't want to lose your ovaries because you think I might become a man." (GC25) The role played by the breasts in the social construction of gender identity was a frequent theme in discussions of mastectomy. As a forty one year old woman noted : "I think there's also a society thing of the way a woman's body is perceived, and I don't think men are immune from that. And the way women are looked at, like a physical thing, and the breasts are a very important part of that." (GC47) The view that breasts are public displays of one's femininity was repeated throughout the interviews and was most clearly articulated by another forty one year old woman who commented that: "Our society's vision of feminity is not tied up with what's inside, it's what's on the outside." (GC08) It was this external-internal or public-private dimension that ultimately differentiated attitudes towards the different types of surgery. Having your breasts removed was regarded as much more radical because it was public, consequently if these women had to make a choice between them then they would choose to lose the ovaries before their breasts in every case. As a 25 year old woman observed: "Your boobs you can see, and if my ovaries are still there or not makes no difference, because nobody else can see them. My boobs everyone can see and I know they're there, and if they weren't there that would be part of my sexuality gone. But my ovaries if I had my ovaries removed now, and couldn't have children well that would bother me, not as much as having my boobs removed." (GC35) A similar point of view was articulated by a thirty six year old woman before she had her hysterectomy, she said: "... when I go topless it's not really going to notice that I haven't got any ovaries, but it sure would if I didn't have any tits, wouldn't it?" (GC25) However, it wasn't just the fact that their bodies might look different to others following surgery that worried these women, for they did not just regard their breasts as things-for-others. Mastectomy constituted a threat to personal identity - removing one's breasts was perceived as losing a part of oneself in a way that removing one's ovaries was not. This was clearly related to the fact that one's breasts were external. They were visible not only to others but to the women themselves. Some women said that it had taken a long time for them to become comfortable with the fact that their body differed from representations of the idealised female body and that overcoming the fact that they looked different from the perfect woman had meant that they had developed a special relationship with their breasts - they defined their uniqueness. Many talked of how their breasts were fundamental to the image they had of themselves as a sexual being , they saw themselves as busty or flat-chested whilst others said they used their breasts to create an image of themselves for others, for example, they were known as a "cleavage person", if their breasts were removed they felt that the persona which they presented to the world would be fundamentally altered.

The role played by the breasts in defining one's identity is vividly illustrated in a forty one year old woman's account of how she had felt following her prophylactic mastectomy. "What did I feel I had lost? Um... a lot of my femininity. A part of my body. My breasts to me were a very important part of my body, very much linked with my mum and the relationship I had with my mum. .. And my breasts were something I'd only begun to like about myself in the last couple of years before I took that decision. ... yes, it's like my breasts were part of the deepest part of me, and the outwardly feminine part ..." (GC47) Following surgery this woman had a complete breast reconstruction, however, although she acknowledged that she still looked like a woman and that her reconstructed breasts were more aesthetically pleasing than the original ones, she experienced a deep feeling of loss, which was related to the fact that she felt compromised as a sexual being, she said: "I'm beginning to be very aware that if I have a new relationship, I'm not as I seem. Physically I'm not as I seem. And I'm not sure how to handle that, and there's an obvious difference in somebody who is like physically complete, and basically in some sense I'm not physically complete."

Finally, it must be noted that despite their acknowledgement of the negative implications of this form of risk management all the women who had undergone prophylactic surgery regarded it as one of the best things they had done. Although some were still suffering from the side effects of hormone-replacement therapy or menopause and the woman who had a mastectomy had lost the sense of feeling in her breasts, all those who had managed their risk in this way perceived prophylactic surgery as removing a life-threatening risk - as far as these women were concerned they no longer had dangerous bodies. In conclusion, this study raises interesting questions about the relationship between the physical body and gender identity. Analysis revealed that these women perceive the body parts associated with sexuality and reproduction (breasts and ovaries) as having a different meaning or value, insofar as they play a different role in the construction of gender identity. Ovaries were described in terms of their hormonal and reproductive functions, thus, the maternal and hormonal body were associated with gender identity in these women's accounts. Breasts, on the other hand, were described as publicly displaying one's feminity, in this case gender identity was related to the sexual body. The fact that ovaries were perceived as internal and private body parts, whereas breasts were seen as external and public, meant that removal of these different body parts was viewed as compromising gender identity in different ways.





Biographical note:



Nina Hallowell has a BSc (Hons) in Psychology from the University of Stirling and a D.Phil in General Linguistics from the University of Oxford. She was a psychology lecturer at De Montfort University from 1991 -1994. She is currently working as a Senior Research Associate at the Centre for Family Research, University of Cambridge on a research project which investigates the psychosocial implications of new genetic technologies.



nh113@cus.cam.ac.uk

Centre for Family Research

Faculty of Social and Political Sciences

University of Cambridge

Free School Lane

Cambridge, CB2 3RF



Avoidance coping stategies for minimizing the impact of HIV

or

"Help is the Sunny side of Control."



Jo-Anne Stein

Centre for Health Policy, Department of Community Health and South African Medical Research Council



A qualitative study was conducted in order to gain insight into HIV positive patients' conceptions regarding appropriate coping behaviours. Unstructured interviews with 27 HIV-positive patients at the Johannesburg General HIV outpatient clinic in South Africa were conducted in order to elicit participants' descriptions of their coping behaviours. Findings suggest that the dominant tendency reported by participants is to favour avoidance coping over more active coping strategies. In this regard, avoidance coping is seen to include the rejection of negative ideation regarding HIV, and the attempt to present oneself as a normal rather than an HIV infected person. The preferred coping strategies reported by participants can therefore be seen to fly in the face of HIV/AIDS counselling theory, which assumes the beneficial effects of active or attention as opposed to avoidance coping. Implications for the management of the disease by way of counselling and other supportive interventions are considered. It is argued that counselling may often be a place of struggle until counsellor and client develop a shared understanding of what it means to cope with HIV.



HIV infection is generally understood to present a formidable challenge to health care institutions, and to contemporary societies, in general. In fact, it is arguable that HIV control functions as a test case for the very suppositions upon which modern society and in particular, modern forms of social control, are based. This is because HIV infection is not presently controlled by way of external factors impacting upon the individual, such as the incarceration, or alternatively, the medical cure, of carriers. In consequence, ultimate responsibility for the control of the disease falls to the individual, as a matter for internal control. That this is fortuitous with respect to a new disease called HIV is why it presents a test-case for the limits of contemporary forms of social control. The increasing extent to which the individual in modern society is responsible for the control of all aspects of self, including the body, is clearly documented by Foucault. The operations for the development of individuals competent to this task are essentially psychological ones. Failures on the level of social control are therefore addressed accordingly as psychological failures. Increasingly, the management of failures in the social production of responsible citizens is therefore addressed by psychology/counselling, ultimately in conjunction with the law. In the case of HIV infection, however, society has been presented with a threat for which, in the production and re-production of individuals, it has been taken unprepared. We may have hoped that with the requisite information at his or her disposal, the individual was already sufficiently constituted to secure control over HIV disease. The extent to which the contemporary individual is ready and able to internalize this new responsibility, has however, proved limited. Instead, an almost infinite array of attempts to displace responsibility for the control of the epidemic onto others has been displayed. We have even banded together as groups again in order to displace responsibility onto other groups. Only with great effort has global society begun to succeed in relegating any further or ongoing transmission to the category of individual deviance, and in handing over any further resistance to psychology for the necessary interventions to be made.



HIV/AIDS and the care of the self.

The psychological self, or "identity" is constituted, by way of a set of culturally-specific operations, in relation to the body. This relation is, for the most part, transparent. However, any illness experience, or experience of threat to the body, brings the question of the relationship between self and body to the fore.

In contemporary western society, the responsibility of the individual for the management and care of self, both mental and physical, is heightened in direct proportion to increased gains on the level of the individual's "freedom of choice". As our relation to the world is increasingly a matter of choice, so our own well-being is increasingly our own responsibility. Territories previously conceived of as external to the self: for example, events in the mind such as dreams and events in the body such as sickness, are increasingly perceived of as being attributable to the self. To the extent that different diseases implicate aspects of the body and/or mind for which we are responsible to greater and lesser degrees, different diseases also implicate the self to differing degrees.

However, their can be little doubt that, in relation to HIV, the self is construed as being maximally responsible on a number of levels. With those exceptions fittingly identified as "innocent victims", we are ourselves responsible for getting and having it and we are responsible for keeping it (or not passing it on). We are also responsible, in the interim, for minimizing and controlling its impact upon our bodies and our selves. In fact, there is hardly any aspect of HIV infection for which the individual is not held accountable by himself and others. As a terminal disease, however, HIV/AIDS presents a particularly strong threat to that very self which is responsible for its management. The injunction for self-care, previously ever- present, is now, therefore, vastly intensified. Fight the disease with a compromised immune system, and fight it with the full force of your remaining psychological resources. Fight it until, and then prolong, the end. Thus we are invited to engage in a prolonged and heroic battle against certain defeat. The modern tragedy and the modern hero are born. The AIDS victim is no more. You are yourself the enemy, but in fighting your self-made destiny; you are redeemed.

In AIDS: A Guide to Survival, Peter Tatchell's approach to resisting AIDS is premised on an "holistic" approach to health: The idea that illness is not a problem which is localised solely in a particular part of the body, and that it is not a purely physical thing; but that the mind, body and emotions are interrelated and interdependent parts of the person which interact to cause sickness and wellness. This understanding of health corresponds with a notion of healing as a process which should treat the person, not just the disease; and treat the deep, underlying roots of the illness rather than its superficial symptoms.

Tatchell writes:

"Sickness is not simply something external that 'happens' to people as passive objects. People often participate in the process of sickness by negative attitudes, expectations and actions; by low self-esteem and self-confidence; by lack of a purpose or motivation in life; by guilt, depression and stress; and by inadequate diet, relaxation, sleep and exercise. In all these different ways, people contribute to undermining their mental and physical defences against disease. This increases the likelihood of HIV infection developing into AIDS and decreases a person's chances of resisting and surviving the AIDS syndrome and its opportunistic infections and cancers." (p54).



"Being positive is Positive".

In a book entitled "Being Positive is Positive" the author referred to simply as Elizabeth, provides us with an example of someone who has a highly developed and expanded interpretation of the inter-relation between self and disease.

In the first instance, she attributes her infection to psychological and moral, rather than physiological, origins:

"In modern society, disease is an unpleasant malfunctioning of the body which has to be overcome as soon as possible. ... But disease can also be seen as the materialization of a conflict or problem in our emotional, intellectual or spiritual "body" which we fail to recognise and treat and which later shifts to the physical level."

As a result, Elizabeth sees her HIV infection as a necessary 'warning' or internal challenge, rather than as an external threat:

"I think a disease, or the threat of becoming sick in the case of HIV-infected people, can also be seen as a great chance to reflect on our way of life, to ask whether we feel content and balanced in the important aspects of our lives or whether we would rather change something to live more happily. I have often wondered what I may have done wrong so that my body has had to warn me by threatening to become seriously sick. I haven't come up with any clear answers. I enjoy the process of becoming more aware of what I am doing and how I am doing it though."

Elizabeth proceeds to explore two aspects of her personality which she feels were implicated in her infection. The first of these was doing what other people expected from her, rather than what was best for her:

"For instance, I slept with many men without really enjoying it, just because they wanted to and I didn't have the courage to say no."

In this way, the sexual origin of HIV infection is construed as a failure on the psychological level of self-assertion, rather than understood in terms of the physiological route of HIV transmission alone. It is for this reason that Elizabeth can compare her disease to cancer:

"...typical cancer patients are those really 'nice' people who put all their energies into pleasing others instead of listening to their own needs and desires to be nice to themselves."

The other aspect of her personality which Elizabeth feels was implicated in her infection is her "intellectual" tendency to perceive the world in a negative way:

"I just didn't maintain an optimistic outlook on life and the world."

To the extent that HIV infection has facilitated these realizations, Elizabeth feels that it has had a very positive effect on her personal development. It is for this reason that she endorses the view that "Being positive is positive" and suggests that "AIDS means Accelerated Inner Development."

HIV infection also means that changing these aspects of her personality is now a matter of critical necessity for Elizabeth. She argues that whereas people who are not threatened by AIDS have the "choice" between "happiness" and "desperation", HIV- positive people do not have this choice, if they are to fight the virus effectively. In the following quotation, Elizabeth's understanding of the interrelation between happiness, psychological well-being and physical health is clearly elaborated.

"You have the choice: You can concentrate on the negative aspects of life and be desperate, or you can concentrate on the positive aspects of life and be happy. ... However, I think for a HIV - positive person it is a matter of survival. If we don't fill ourselves with positive energy, our immune system will lose its strength to fight the virus."

Here, the relation between happiness and physical health is a direct one, in so far as "positive energy" strengthens the immune system.

Paradoxically, HIV infection has, however, made "being positive" somewhat easier for Elizabeth. By forcing her to come to terms with her fears, including her fear of death, her HIV infection has made it easier for her to confront the challenges she has failed to overcome before.

"It [HIV] means that I am no longer afraid of death and that by overcoming this fundamental fear, I have become less fearful in general. Once the fear of death has lost its importance, all of the other horrors seem minor."



Counselling: The Role of Narrative in Self-Care.

According to Arendt, narratives are about acting and suffering. They are about doing something and what happens as a result. The therapeutic plot is one in which the actor must then go out to battle, so to speak, against adversity, actively incurring more suffering in a fight to overcome damage, both to himself and to his body.

It is generally assumed that the search for meaning in events is itself a coping strategy which leads to increased self-mastery over a situation.

"We make as well as tell stories of our lives and this is of fundamental importance in the clinical world. Narrative plays a central role in clinical work not only as a retrospective account of past events but as a form healers and patients actively seek to impose on clinical time."

It is for this reason that so-called "avoidance-coping" or "denial", through which the consideration of stressful events is blocked, is considered to be minimally adaptive. It is also considered self-evident that the way in which people understand events such as illness will determine both the extent to which, and the manner in which, they will cope with their disease. It is for both of these reasons that counselling is considered to be a necessary aspect of the care of people with HIV.

The extent to which psychological well-being, or coping, implicates a constructive search for meaning on the part of the HIV infected person devolves upon the extent to which HIV infection is seen to impact negatively upon an individual's identity or definition of self.



In this regard, two critical losses are incurred. Firstly, the fatality of the disease presents a fundamental threat to the continuation of the self or the projection of the self into the future. Much of the meaning of our lives is derived by deferral, and dependant upon projections into the future. Terminal illness inevitably generates a narrative loss; the task of counselling is to accomodate a new body and to create a plot in which the 'ending' towards which one strives invokes a sense of what it means to be 'healed' when one will never be 'cured', such that the central role of hope in structuring the meaning of the present can be regained.

Secondly, the representation of HIV/AIDS in society has consistently been geared towards distancing and isolating the disease as "other". When the "other" becomes salient to our definition of self, there can be little doubt that this presents a substantial threat to positive representations of self to self.

It is for this reason that the re-definition of self and a full consideration of the relation between HIV and self is seen to be required. Counselling provides the framework within which the arduous work of re-narration (negotiation, assimilation and incorporation) is effected. "History-taking" is no longer diagnostic. Rather, hearing/constructing the patient's story becomes an important aspect of therapeutic intervention. In the counselling exchange, we learn what we are like, what our experience is, how things are with us. (Taylor, 1986).

Elizabeth's narrative graphically illustrates the kind of subject which counselling constructs; one who examines herself. Silverman (1990) argues that what this ultimately suggests is that counsellors face subjects whom they themselves have constructed.

To view HIV/AIDS counselling as part of a progressive (World Health Organisation) programme of 'enablement' or 'empowernment' must not blind us to the broader cultural agenda of which it is also a part; the control or regulation of problematic behaviour by way of an incitement to speak. (Foucault, 1979).













JSTEIN@hoopoo.mrc.ac.za

AIDS Project

Centre for Health Policy

Department of Community Health

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MINDSCAPES: Embodiments of souls



Alastair Mundy-Castle

University of Zimbabwe



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Contextual comments:

Arising from the discussion following the presentation the question was raised as to the possible therapeutic effect or implications of mindscaping. One questioner made the comment that it should not make much difference whether the painting was more of the artist's mind or that of the subject - the therapeutic value could still be significant. The author agreed that there seemed to be potential therapeutic implications and that these became evident from early on in the mindscaping process - the subject became very much calmer and more relaxed as the project developed, and even today she regards the whole process as one which was beneficial to her. According to Bee, Michele told her that she talks constantly about the experience and how good it has been for her. Her mindscape now hangs in a central position in her living room and she enjoys discussion about it with any friends who visit. Mindscape painting seems to be a natural combination of my work as a psychologist and life as an artist. I intend developing it both as a scientific experiment, and as an artistic tool for exploring the minds of anyone who wishes to engage themselves in such endeavour.

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This paper examines the nature of abstract-surrealist art and proposes a conception of art involving among other beings the "embodiments of souls". For the artist-psychologist, this means going beyond the blinds of collective mentality into the worlds of individual minds. The author's abstract-surrealist mindscapes (to be shown) contrast with "more understandable" art in the same manner as existentialist-phenomenology contrasts with neo-behaviourism. Attention is drawn to the nature of the status of cognitive psychology within the currently emerging but as yet unnamed psychological paradigm: Despite its recognition of mind, is cognitive psychology blinded in any way by its overreliance on strictly empirical procedures? Is it neglecting the "logic of illogicality" and thus ignoring a powerful creative tool? When painting mindscapes the artist-psychologist enters the minds of his subject-models using intersubjective qualitative research methods. The resulting mindscapes facilitate self-understanding and serve as a creative psychological tool. Social representations have become a dominant theme in the post-modern world of instant communication. Paradoxically people are no longer individuals: they are part of the ongoing massage. Hence some subjects find themselves unable to comprehend their mindscape, a portrait of their own minds. They have lost the capacity for seeing that which is not obvious. Given this understanding - through the artist-psychologist - they may experience a deeper understanding of their own reality.



This paper examines the nature of abstract-surrealist art and proposes a conception of art involving among other beings the "embodiments of souls":. For the artist-psychologist, this means going beyond the blinds of collective mentality into the worlds of individual minds.

I realise there are several thorny points here e.g. what is the meaning of 'soul', is collective mentality knowable, are minds ever wholly individual, and is it really feasible to paint a mindscape? Added to these, what exactly is meant by abstract-surrealism? I will begin with the latter question, since it is probably the easiest to answer. In doing this it is necessary for me first to refer briefly to my experience and development as an artist.

My first three paintings were done in the early flush of adolescence (around 1936/37), oil on plywood. I had read about surrealism and seen some works of Dali, and all three of these first paintings were crudely surrealistic. I took them to the art class at school for the new art-master to see, but before he did so they were appropriated by an elder boy who really liked them and I never saw them again.

My next attempt at painting began as my first marriage was disintegrating. There was a very powerful urge within me to paint and it was this hitherto unexpressed creative impulse that led me inexorably to divorce. I could not be creative within the context of marriage. Despite being a moderately successful neuropsychologist, I had an overpowering need to paint, to get to know artists and their modes of living, and indeed to be an artist myself. I had to do this with very little money, a rented garret in Wolmarans Street in the heart of Johannesburg, and some paints, brushes and plywood. The results were exciting. The first five abstract paintings of this period which I submitted to a student's exhibition at the University of Witwatersrand were accepted.

This led to a series of exhibitions in Johannesburg and Durban and to a period of painting in South Africa, Ghana, USA and Nigeria lasting from the late fifties to the end of the seventies. It was during this time that I began to develop the style which later I would call 'Abstract-Surrealism', discovering only recently that this term was already in use. Thus John Griffiths, in his paper 'Movements in Abstract Art (see Papadakis, 1987) refers to abstract-surrealism, defining it as "searching the individual and collective unconscious for arbitrary form, eliciting forms from formless dreams, or co-operating with the essential dream work of an inchoate world". Interestingly he cited two artists - Jean Dubuffet (1901-1985) and Antoni Tapies (1923-) both of whom indirectly influenced my own development, in the sense that I saw them as painters whose work I thought important and significant.

My own definition of the work that I do is similar to that of Griffiths, but in the case of Mindscapes my painting aims to portray aspects of another person's mind through the process of interacting with that person, asking questions that I think are significant, and detecting cues pertaining to the nature of that person's mind and soul. I shall discuss these procedures in more detail shortly.

For me, abstract-surrealism serves to help understand the irrational. You can't do this by making it rational. You have to be irrational. Some people would say that this is an absurdity. It is probably a logical absurdity but logic is not what we are concerned with - which is living and experiencing the world as it really is - a kind of phenomenological transcendentalism. By observing the world of people one can understand how much of human existence is irrational in the profoundest sense. Abstract-surrealism portrays these absurdities by converting them into interrelated visual forms depicting the complex mysteries of soul and spirit.

Picasso rejected abstract art on the grounds that it is a "bag into which the viewer can throw anything he wants to get rid of" (Gilot & Lake, 1965). He believed that you cannot impose your thought on people if there is no relation between your painting and their visual habits. What he did was to present realism by simply jumbling up all the parts in order to "make it impossible to escape the questions it raises". Picasso's approach in my eyes was his realistic depiction of parts of a whole arranged in unexpected ways, a visual demonstration of relativity theory in artistic action. This is simple logic. And the interesting result of course was his incredible impact on the art world. One might now question why? The answer is simple - with extraordinary skill he fragmented everyday reality and rearranged it according to the multidemsional logic of cubism. In some senses he was a visual Einstein.

While Picasso made an incredible impact on the pre-1960 art world, obviously now the world picture is quite different. Almost everyone today knows in one way or another the prevalence of absurdity - or contradictions of logic - in the contemporary world.

The present near universal condition of poverty, war, ethnic cleansing, child rape, abuse of women, etc is a function of total irrationality, which clearly is now more fundamental than rationality. Which brings me to an autobiographic consideration of the paradigm shift in psychology which took effect in the sixties, with the collapse of neobehaviourism and the emergence of the twin streams of humanistic and cognitive psychology.

It was early in 1961 that I was attracted to Ghana to join a new research institute there. Apart from being immediately impressed by the social warmth of the many people I met, I was able to travel over most of the country, especially the southern half, conducting a variety of studies of infant and child development, helped in each town or village by a student from the university of Ghana who lived in that town or village. I do not intend here to go into details about this research, other than to comment on the resultant overwhelming impact on me of what I came to call the social intelligence of traditional Ghanaian culture (Mundy-Castle, 1968b, 1974).

Put briefly, my proposition deriving from this research, supported later by psychological research in Nigerial rural areas, was that traditional West African cultures saw the cultivation of social intelligence as more important than technological intelligence, the opposite being the case in western cultures. This difference between Euroamerican and traditional West African conceptions of intelligence seems very much to be the result of the divisive effects of literacy, yielding contrasting culturally mediated developmental scripts.

Literacy and the schooling that goes with it entails and engenders individualism, with the result that co-operation in school classes (called cheating) is inevitably penalised (Greenfield in Greenfield & Cocking, 1994). Perceptual wholism - as assessed by Gestalt Continuation test results among rural Ghanaians in the early sixties - is slowly if at all transformed into analycity by school-based literacy, suggesting that technological intelligence is analytic thinking removed from its larger social context (Mundy-Castle, 1968a, l991). This decontextualisation is at the root of the independence scripts favoured by western nations, contrasted with the interdependence scripts of many third world cultures (see Greenfield & Cocking, 1994). The former give rise to a greater emphasis on co-operative social intelligence, the latter on technological intelligence, with associated encouragement of analytic thinking, individualism and competition.

Forgive me if I seem to be straying from the mindscapes - I am not. What I am drawing attention to is that the characteristics of social intelligence favoured by traditional African and other third world cultures fits the newly emerging post-positivism paradigm far more closely that the old positivist paradigm, which so long dominated western psychology, politics and economics.

This is evident in the following characterisations, adapted from the work of

Guba and Lincoln.



POST-POSITIVIST POSITIVIST PARADIGM

(Mentalist) (Behaviourist)

Social Technological

Intersubjective Objective

Spiritual Scientific

Wholistic Fragmented

Belief-oriented Data-driven

(top-down) (bottom-up)

Undifferentiated Differentiated

Emotional Withdrawn

Cultural Philistine

Open Closed

Warm Cold

Mutually causal Linearly causal

Holographic Mechanical

Heterarchic Hierarchic

Complex Simple

Indeterminate Determinate



My reason for contrasting these two paradigms is that in my own case as I grew up in England between 1923 and 1941 I found myself quite alienated from my own culture, unable to fit into social situations, to behave in the right manner and so on, and felt somewhat like an emotional cripple, compensated by some bodily skills like running and fencing. The prevailing values of social life seemed wholly wrong. The result was a form of underground rebellion against all in authority and all that smacked thereof, resulting in being caught in and even confessing to unlawful acts with associated mental and corporal punishment. It was my perception of this unformulated paradigm of the future, reinforced by the avant garde artists and poets of that time, which ultimately convinced me that I too was an artist, and that was how I would live and act.

In this process may be seen the forward-looking nature of the artist, whose works often anticipate in a not-easy-to-understand manner what is likely to be easily understood in the future. Art goes beyond the present, and in so doing excites hostility, especially between powers in charge and those who know they (the powers) are barking up the wrong tree.

Abstract-surrealism, like other comparable artistic approaches (visual, verbal, musical, etc.) is revolutionary in the sense that it demands throwing away old preconceptions and opening oneself to the unexpected without fear, guilt or shame.



Collective Mentality, Individuals and the Soul

Recall the questions raised at the start of this paper - what is collective mentality, is anyone truly an individual, what is the meaning of soul? I will now try to give some answers so as to help understand just what the idea of a mindscape implies.

My first assertion is that mind is a process, which, so far as we are concerned, is primary in the universe. Indeed I would argue that it is inherent therein, and part of God's big bang.

Concerning collective mentality, two streams of thought are important - social representation theory, adapted by Moscovici (see Farr & Moscovici, 1984) from Durkheim's notion of the collective mind, and the work of the Russian linguistic school, notably Volosinov/Bakhtin (see Sinha, 1988; Wertsch, 1991).

Moscovici's social representations are not unlike Kuhn's (1962) notion of scientific paradigms. They are systems of values, ideas and practices which serve to establish a meaningful order within people's social and material world by providing codes for sociolinguistic exchange. Social representations are created and recreated by people in interaction with each other, especially during conversation and dialogue as well as through the media. They exist not in any individual's mind, but in the world of social discourse. They prescribe what people should talk about, how they should do so, and how they should conduct themselves according to social situations, in the same way as a scientific paradigm dictates, for example, about what and how psychologists should talk with each other and do their research. I recall the peculiar looks I was given long ago (circa 1955) in America when I said to a group of eager neobehaviourists that I wasn't all that impressed by the work of Skinner, and that anyway I believed any self-respecting psychologist would be wrong to disregard the fact of our minds.

The message of the Russian linguistic school bears similarities to that of Moscovici - social psychology is not located anywhere in the "souls" of communicating people but entirely and completely in the word, the gesture, and the act. "Individual consciousness is not the architect of the ideological superstructure, but only a tenant lodging in the social edifice of ideological signs ... the reality of the inner psyche is the same reality as that of the sign ... the subjective psyche is to be localised somewhere between the organism and the outside world ... the organism and the outside world meet here in the sign" (Volosinov/Bakhtin, 1929 - see Sinha, 1988).

Meaning is central in the sociocultural approach to mediated action. Who owns meaning? Answers range from "no one" (deconstructionist) to "particular individuals". Bakhtin's approach lies between the two, being grounded in dialogicality - there are always at least two voices (Wertsch, 1991).

The conclusion here seems to work against the idea of anyone being an individual per se. All our psyches are functions of discourse with others. Nevertheless, I believe that each of us makes our own interpretations of the collective voice - we are in one way the same, but in other ways unique. And it is on this unique quality that I try to focus when creating a person's mindscape. For me this is their individuality. This is their soul.

The mindscape on display at this conference is that of a young mother of three - Michele. I met her in 1993 and had a friendly contact with her through my partner, Bee. Before I began the painting I spent many hours observing her, questioning her and generally interacting on several levels. Part of this interaction required her to respond to a set of questions. She seemed to enjoy the whole experience and participated in each session with confidence and enthusiasm. These were the questions I asked:



1. Tell me your worst experience.

2. Tell me about the memory that gives you most pleasure.

3. What is your favourite pastime?

4. Food and drink - what kinds are favoured?

5. How important are:Sex, Security, Love, Family, Health, Looks/Appearance, Attraction Level?

6 What do you consider is your life role?

7 Are you more...