• Palliative care
• gender
• race
• narrative medicine
• South Africa
• ethics of care
• cancer care
• care of the elderly
• palliative care
• gender studies

In the 1980s, like many South Africans during the ‘struggle’ years I became hooked on the TV show Dallas. We used to go to watch the programme at the home of one of our friends—a welcome break from the busy politics of mobilisation at the time. The irony of our watching a glitzy USA soap opera in between going to political meetings and running workshops on the psychological effects of detention and state violence was not lost on us. Our host, luckily, had a keen analytical mind and made it all right for us to watch Dallas as long as we watched it ironically, which we duly did. She also used Dallas as an opportunity for social analysis, and 30 years later I still remember her describing Jock and Miss Ellie (the patriarch and matriarch of the fabulously wealthy Ewing family) as the two faces of capitalism—on the one hand there is the hard-driving man, competitive in business and ruthless, and on the other is the kind woman, empathic, always caring for the underdog. The kicker of course in this economistic analysis of Dallas is that it is the very hard-driving competitive masculinity of Jock which creates and enables the space for the kind Miss Ellie—a lady of leisure empowered through her husband's wealth to be blind (as the powerful are) to the drudgery of making a living and getting by, to the below stairs life of her own servants (male and female), and to what, in the ideology of shows like Dallas, has to be done in the tough male world to get ahead. And this blindness allows and encourages a benign largesse which is genuine and at times bountiful but always within the parameters of existing power and wealth relationships. Little did I know, at the time of watching Dallas all those years ago, that I would come to think again about these two faces of capitalism and exploitation when trying to make sense of a major issue in my own life.

It is not that common for psychologists (especially white male psychologists) to write very personally about their own lives, but in doing so I am influenced by Eva Kittay's1 essay ‘The Personal is Philosophical is Political’ in which she describes her struggles as a philosopher to get other philosophers to imagine the life of her own child, who has a serious cognitive impairment. There is something to be said (and the feminist echoes are obvious here) for examining what is proximal and visceral. In this regard, I have been worried about the extent to which certain forms of labour, and certain forms of emotional engagement, are rendered invisible, as shown by people like Tronto2 writing on care work. As an example of this, by the way, colleagues and I are currently looking at some surprising hypotheses about mental healthcare as practised in large institutions, hypotheses which seem completely obvious when you think about them but which have been opaque to me in my 30 years of being a clinical psychologist. The story colleagues and I are looking at goes like this: quite a lot of the care people in psychiatric institutions receive comes not from doctors, nurses, psychologists, occupational therapists, social workers or others in the ‘multidisciplinary team’ but, possibly, from cleaners and even the security guards who form a ubiquitous but little acknowledged presence in much of South African life. I don't know the extent to which care is undertaken by these people who have no mental healthcare training at all, but what struck me as we stumbled on to looking at this issue (while actually researching something else) was how obvious it now appears that—yes—these informal workers are the ones actually spending time with patients. How could I have not noticed this before? Part of the answer to this, of course, is that it is my very privilege as a healthcare professional which has stopped me noticing a very obvious aspect of mental healthcare.

As I turn to discussing my own situation regarding the care of my dying mother, then, part of what I am trying to do is to make obvious things which are felt powerfully, viscerally and close up, but are somehow hidden from the world. Things are hidden partly because much care work occurs privately in domestic spaces; a major problem with securing rights for care workers is that although there are very many of them, they are distributed very thinly across multiple spaces. But there are also silences at work about the personal, about allowing keenly felt experiences of care and dependency to intrude into the work space, even (as in my case as a clinical psychologist) about claims to hold expert knowledge about private and emotional issues. The question which I want to come to here, using my own experience, is simply this. Given our current social arrangements and given my own location in them as a white able-bodied South African man who is educated and privileged, how possible is it, if at all, to create conditions in which care is both recognised and entered into in as non-exploitatively as possible? In my own relationship with carers who looked after my dying mother, for example, was I anything more than (and could I have been anything more than) a simpering Miss Ellie enabled to dispense care to the carers only because in another incarnation I was nothing other than the exploitative Jock?

Here's the story (or part of it): after a series of serious falls requiring surgery, my mother, who had been diagnosed with lung cancer, came to live with my wife and me at our insistence in February 2010. She lived with us until her death almost a year later, in January 2011. This had not been her choice or ours, but given that her serious falls had occurred when she was in the highest care unit of the retirement complex she had chosen to live in and had expected to die in, we felt she needed better care. We employed the services of a very well-run care agency and for almost year not only did we have the adjustment of having my dying mother in our home, we also shared our home 24 h a day with a changing stream of carers, all women of colour, all with no formal qualifications, and all required to spend long hours tending to my mother and simply being close to her in case she fell again. The agency was run by professional nurses and the carers all wore uniforms that looked like nurses' uniforms but they had (for us anyway, seduced at first by the uniforms and the professional-looking file) a shocking lack of understanding of the basics of how the body works. Some of them, understandably, seemed terrified.

From our point of view, most of our relationships with the carers were very good, and an enduring memory for me is of hugging one of the carers over my mother's dead body, and both of us crying and comforting each other. I don't want this overall positive view that I have of the experience with the carers to be ignored or forgotten (although I must acknowledge that I cannot know what the carers, even those who still keep in touch, think of us). But I want to use one incident to discuss some of the complexities of care and exploitation.

Early on in their relationship with us, many of the carers told us that we were different from others in whose homes they worked. We spoke to them and we always invited them to eat with us when we had meals (in fact, one of the more stressful parts of our day would be preparing dinner for my mother, who had lost her appetite, and something for the carer as well). It was important to us and to our sense of ourselves to treat these women with respect and dignity. As we were not home for large parts of the day, and not with my mother during the night, furthermore, there was self-interest in the way we treated the carers. We believed that if we treated them well, they would be kind to my mother (in a previous illness she had had some bad experiences with, indeed had been abused by, carers). The carers told us that they fought among themselves to come and work in our house because we were nice people, because the food was good and because that whenever my mother was well enough we took them on outings with us to nice places.

One of carers in particular became very friendly towards us. After some time, though, she began to seem resentful and angry. We were not sure why. One issue was that she began dropping large hints about her need for money. We were paying large sums of money to the agency but the carers, we came to learn, were exceptionally badly paid. Also, they were not paid if they did not work, and as one patient died they moved on the next day to the next patient.

One day when my elderly father-in-law was due to come and stay with us for a few weeks, we were unable to find his radio. We thought that we might have put it in my mother's room and we started searching for it there, looking through her cupboard. We did not usually go through my mother's things. The carer did not say anything but clearly became very angry indeed. We stopped looking for the radio (which in fact was in the cupboard, as we discovered after my mother had died) and asked her what was wrong. The carer said that she did not like being accused of stealing, and would not listen to our protests that we did not think she had stolen the radio (which we did not). Very ostentatiously, she began writing notes in my mother's file.

When she had left in the morning and another carer had taken over, I read the file for the first time. We had been told about the file when the caring agency had started working with us and had been given access to it. I was shocked to read lengthy notes by this carer about how nasty and disrespectful we were to her, going back weeks. Other carers agreed in the notes that we were rude and difficult—that I was particularly rude. On one occasion, apparently, I had failed to greet one of the carers when I came home and she was angry about this. I am sure it is true that on one day I did indeed not greet her, but nowhere in any of the notes was recorded the long conversations we had with carers, the food, the outings, the (‘illegal’) ‘loans’ we gave them not expecting to be repaid, the printing out of pages from the internet for homework exercises for their children. I was surprised by how very hurt I was by this, and also by the fact that these notes were read every week by the care agency but nothing had been said to me about my allegedly abusive behaviour.

In the event, the discovery of the notes was a positive turning point, from our point of view. We asked that the carer who believed she was suspected of stealing be transferred to another patient and we had some painful but I believe very helpful discussions with the other carers, who all stayed on and to our knowledge did not complain about us again. The agency's response to my query as to why they had not informed us and taken us to task about our allegedly rude and exploitative behaviour was that we had allowed the carers to get too close to us. We must stop giving them food and we must stop including them in discussions in the way we did. We chose not to take this advice.

When I try to make sense of this very painful incident in the long story of my mother's illness, a number of issues come to mind. There are echoes here of generations of stories about domestic workers who are accused of stealing. I can hear other echoes of the way people talk casually about domestic workers in South Africa—don't pay them too much or they will get ideas, don't let them get too close. The agency's solution to the difficulties we had, it seemed to me (and I was enraged by this), was to put us back into the comfortable ascribed roles of white oppressors of black women. I refused to do what the agency said, but of course we were employing through the agency women who were appallingly paid with dreadful working conditions. Who were we fooling? We exercised choices—I did not, for example, have the emotional stamina (or I felt I did not) to employ carers directly, which would have worked out cheaper for us and allowed us to pay carers quite a large multiple of what they earned through the agency—I chose to outsource to the agency the anxiety about whether a carer would appear for work on any particular day or night. In this I protected myself, but at one remove was employing people at extremely low wages. In this context, then, it is not surprising in some ways that our being ‘kind’, although initially clearly attractive to the carers, seemed to come to some of them to feel worse than our not being kind. We behaved as though we were their equals and friends when in reality we were not offering friendship. Indeed, when one of them upset us, we made sure we never had to see her again.

I have no doubt, looking back, that the person who felt accused of stealing had her own difficulties. It is also, although this is very hard for me to acknowledge, important to see her agency in all of this. An alternative narrative to my own, which is essentially one of betrayal and despair, is a narrative of resistance. Through her behaviour and through the way she took control of the discursive space which was the set of notes about my mother, my family and me, she was very active in taking authorship and authority. However unfairly I may have experienced the event, I have to recognise that there is considerable strength in how she took on the situation and stamped her own story on it. There is a rich history of struggle and activism around these issues both internationally and in South Africa, where the intersections of race and class are so clear, and it would be a mistake not to see the links between this woman's authorship and that history of struggle.3 4

The fact remains, though, that we did have more structural power than she did. And after she left things got much better. We parted on very good terms with the carers and we had a tea for them after my mother died—a warm and moving occasion. Some of them keep in touch. But it's too easy to ascribe what happened simply to a ‘bad apple’. The ‘bad apple’ was one among a number of the carers who brought a very unpleasant truth home to me: that our structural relationship with the carers was one of exploitation, and that however nicely we dressed this exploitation up, it remained exploitation. In our case, perhaps, to borrow that immortal line from quite recent US politics, we were putting lipstick on a pig. Not only did the pig (the reality of exploitation) remain a pig, alas, the very fact of the lipstick (our do-gooding) made the piggishness of the pig even more clear and even more unbearable.

All of this wash of complex domestic politics occurred, of course, against a backdrop of other issues which have bearing on issues of care. On the surface, work colleagues were very supportive of the fact of my very intense involvement with my mother's illness, but I had a number of bruising experiences at work which showed that people did not have patience with my ongoing distraction and worry about my mother; this was certainly not something a man, or a man in my position as a senior academic, should be spending so much time on. I was thrown back in this to memories of when my daughters were small and I was the only father at ‘Moms and Tots’; for example, I remembered being called ‘Mr Wonderful’ but being frozen out by groups of women who did not want a man doing childcare. I unwittingly insulted a professional colleague when we were both at the library with our young children. “You are so wonderful to be here with your children,” she said. “So are you,” I said. She found this very insulting as it suggested to her that I had imagined she was not a good mother.

Most of my colleagues were very kind and patient with my distraction, my panic and my grief, and they continue to be. But would different social relationships whereby, for example, I could have opted for part time work over this period, have changed my need for carers and my need to exploit carers? I am very clear that unlike many daughters who look after elderly fathers, I did not want the intimate experience of having to look at and clean my mother's dying body, to deal with her vomit, urine and faeces. I would still have wanted to pay other people to do it. My own professional life, furthermore, is scripted only partly by me (although as a privileged academic I have much more control or authorship than many others have over their working lives), but is also discursively shaped by what can be expected from a white male professor. Part of my struggle with the carers was a struggle with an identity politics into which I am inscribed. It is paradoxically my very power which gives me the choice to question my own role with impunity—that option is not as easily available to the carers, and when the roles are questioned, this can and does have consequences for them which are far more serious than those I experienced.

When I look back over the last year of my mother's life I feel proud of many things—that we took her into our home, that my relationship with her, to the end, was respectful and energetic and not simply dutiful. We had many arguments and discussions which enriched my life. But part of what made this possible was the exploitation of the carers, and of this I don't feel proud. In the bigger scheme of things, if I were to be more than Miss Ellie in a world made possible by Jock, much more fundamental things would have to happen than naive kindness, and as I have shown, naive kindness as practiced by me can have cruel consequences. The issues I have discussed are very close to me and occurred in a private and very tender place, but the politics around them, and the need for a different politics of care, are much bigger. In my professional work, I am engaged in various forms of what may be termed activism around care work—I am working with colleagues to try to change the roles played by people in invisible healthcare work in the disability and chronic illness field, for example. I am lucky to be doing this work, and I hope it will have some impact. In my attempts to make issues of disability more visible, furthermore, I have contributed to a photographic project on childhood disability, and I have also published a memoir which straddles the divide between the personal and the professional.5–7

But I need to do more—I need to create a space within which my own complicity as a private citizen in patterns of exploitation can also be thought about. My reading of the literature on care work leads me to the view that all acts (including my own as a professional) which silence discussion, however difficult, about the politics of care, reinscribe and, indeed, relegitimise the relegation of issues of care and dependency which we all face to a zone of unspeakability, and hence of resistance to change. These issues of care and dependency, of whose care work we hide to make ourselves look and feel independent, even though for all species independence is in fact a myth, demand many forms of activism, and included in this is the activism of thinking together about what we understand care and dependence to be, and that of facing the implications of the shame many people feel, as I know I do, as a result of our banal exploitation of others.