In March last year David Cameron announced another “national crisis”, to go with the economy and Britain’s “broken society”. To these crises, one real and one imaginary (because society was fixed when – No Dogs, No Blacks, No Irish? Before the Industrial Revolution – or the Glorious Revolution? Pre-Reformation? The escalator, as Raymond Williams once said, just goes back and back and back… and never stops), Cameron added a “dementia crisis”. Dementia is “one of the greatest challenges of our time”, he said, and the low level of dementia “diagnosis, understanding and awareness” all but a form of “collective denial”.
For once, it would be hard to disagree with him. A recent study by Oxford University concluded that the number of dementia sufferers in Britain, estimated to be around eight-hundred thousand, would reach a million by the second quarter of the century. The cost of dementia care is extremely high, at £23bn a year, compared with £12bn for cancer and £8bn for heart disease, and, of course, this figure will only increase. But the seemingly endless trail of noughts also belies the fact that dementia is as much a moral as an economic or administrative problem; we should not forget this.
And yet, how easily it seems we forget. Pierre Bourdieu memorably said that Watergate was not a scandal, because to be a scandal something must be unusual – and Watergate was just one revealed instance of the true workings of American politics. Might we not say the same of the dementia crisis? In truth it, too, proceeds not as a series of individual “scandals” (Mid-Staffordshire, Hilton Gardens, Kirknowe, Ash Court, Oakfoss House…), but instead like some forgotten war, whose continuing existence, and continuing moral horror, the general public is reminded of only when an unusually violent reversal takes place — and even then for no more than a few weeks at a time.
All too often, “care”, as a description of what happens in institutions, seems little more than a sordid euphemism. Take Winterbourne View, for instance, a care home in Bristol which featured two years ago in a Panorama investigation exposing abuse one clinical psychologist described as “torture”. Six members of staff have since been jailed for a total of seven years and four months, and five others received suspended sentences. In response to the case, Mencap released the report Out of Sight to raise awareness of neglect and abuse in care homes for those with learning disabilities (of which Winterbourne View was one).
The focus in such exposés rarely, if ever, falls on the experience of being a carer; and with good reason, you might say, if it is the carers who are doing the wrong. But should we really be so hasty in disregarding this perspective? Are we missing out on insights that might help us finally make care worthy of its own name? I think we are.
As a social anthropologist investigating ordinary moral experience, I volunteered as a carer in a home for the elderly, in my native Dorset. I had never been in a care home before, and I expected to be shocked; duly, I was – by the lingering smells, by the silence and hopelessness of the residents, by the sheer lack of outside interest in the place and the people within it.
What really made me think, though, was how the residents were seen, or came to be seen, as less-than-fully-moral human beings. By “less-than-fully moral” I mean they ceased to be responsible at all, that their actions, even when considered negative by the carers, ceased to be their own. I, as a carer myself, was urged to see the residents in this way. Troublingly for me, I found it hard not to.
What still defines social anthropology is the practice of long-term fieldwork, though much of it no longer takes place in exotic environments or even overseas as it once did. The assumption is that spending large amounts of time living or working – or both – with your informants will give you a better insight into and understanding of the social institution or practice you are studying; volunteering in the care home allowed me to experience some of what it’s like to be a carer. It would be a mistake, however, to assume that this close understanding only leads to a condoning of what you have experienced. It remains possible, once you have tried to understand, to judge and to condemn, but one realises that sometimes clichés persist because they are true: that there is an expansive space where black shades into white, called grey.
Some further provisos: as far as I could tell, the care home I studied was a good one. It had a high rating from the Care Quality Commission; residents and staff liked and were affectionate towards each other; the environment seemed comfortable and secure; I never witnessed physical or verbal abuse. Nor can I claim that my experience was typical or representative of what goes on in every care home in Britain, for there are many types.
Nonetheless, I do believe that my experience can tell us something about how those in care become subjects deserving or undeserving of certain kinds of respect and due. Whether this necessarily leads to their abuse or mistreatment is yet another question. The recognition of moral difference can just as surely lead to compassion as it can to cruelty; but even this, the very opening up of such a possibility, should give us pause to think.
Ideas about responsibility are central to our understanding each other as moral beings. Explicitly formulated or otherwise, ideas, theories and questions of responsibility inform not only the most complex legal and philosophical debates, but also the most mundane social interactions. Whether we knock over a glass of wine at a friend’s house, or stand accused in the dock, we come to dispute claims of responsibility and blameworthiness (and sometimes agree upon them). Responsibility is a vexed question — I didn’t mean to say that: I had been drinking… I was tired and upset… I had a bad childhood… — and even in what seem the most basic controversies there are no simple answers; but that doesn’t stop us from having our opinions and defending them, often without compromise.
On first inspection, Friedrich Nietzsche, he of the “Blonde Beast” and the Übermensch, appears hardly the most suitable philosopher to tell us anything about care and compassion (though his tragic life might: he died mad and in the care of his anti-Semitic sister, whom he hated and who edited his work so that it fell in line with her proto-Nazi sympathies).
Not so, however. For part of his Genealogy of Morals, his revealing of the non-moral origins of morality, is a quasi-historical account of the creation of the responsible individual that can help us to understand how different institutions create different moral subjects, and how these different categories might make possible both care and abuse.
Moral man, responsible man, was created, Nietzsche argues: he had to become so. This was a social process that took place at a particular, though indeterminate, time in history; in a radical break with the past, with a time when man was neither moral nor responsible — was not held to account, was not punishable. As Nietzsche says,
“The task of breeding an animal which can make promises, includes… as its condition and preliminary, the more immediate task of first making man to a certain extent necessitated, uniform, like among his like, regular and constantly calculable.”
According to Nietzsche, the creation of moral subjects came with the “slave revolt of morality”, a revaluation of dominant aristocratic values by the weak and the oppressed, that is, the followers of Judaism and, later, Christianity.
We need not detain ourselves with these details. What is most important is the most general: responsible persons can be made and unmade, permanently, and the process by which this happens is necessarily social – these are the insights Nietzsche gave me when I came to account for what I had experienced, and the starting-point for an understanding of care from the carer’s perspective.
Unlike a residential home, where residents can still care for themselves, though not fully, a nursing home is for those who cannot and so require full-time care. In the nursing home where I worked, the average age of a resident was eighty seven. Residents were assessed according to the Capabilities Scheme, with level 1 being the most capable and 3 the least; over three-quarters of them were assessed as somewhere between 2 and 3, with the rest at 3; I counted two residents who could walk without assistance, out of a total of around forty. Although only some of the residents had been diagnosed with dementia, the suspicion among carers was that many more had it; but this suspicion was never confirmed, indeed, could not be confirmed — an important point to which I’ll return.
Learning to care consisted mainly of shadowing other more experienced carers around the home. As I was only a volunteer, and so not qualified to carry out certain intimate tasks, I had more time than the other carers to spend with the residents. I went from room to room, greeting them; I helped feed them at lunch time; I moved them from their rooms to the lounge, where they sat for the greater part of the day, and then back to their rooms for the evening; I sat and spoke with them or read to them, and where that wasn’t possible I sat and held hands with them or gave them a hug; I made endless rounds of tea and biscuits.
What’s important to note is that I had to learn to care: you don’t just walk in off the street and start caring for the elderly, though of course certain everyday qualities (patience, empathy) will put a prospective carer who possesses them at an advantage from the beginning. Being able to care, I was told by other carers, meant learning to “turn off” my emotions, to dissociate doer from deed and not to react to provocation from the residents, of which there was more than enough. They could be like “naughty kids” who “don’t know what they’re doing”; in short, they were seen as lacking the necessary stable mental state to be judged responsible agents. Bad behaviour was still bad behaviour, but it wasn’t blameworthy, and to react as you would outside the home, to reproach a resident for throwing water or insulting you, would only upset them and thus aggravate their condition.
The idea of “turning off” one’s emotions is strikingly similar to a famous philosophical account of how we attribute responsibility and blame. P.F. Strawson, in his paper “Freedom and Resentment”, makes the claim that responsibility does not derive from some objective measure “out there”, but is related to emotional stances we take towards each other; when we identify somebody as, for whatever reason, irresponsible or undeserving of blame, we suppress these emotions and take what Strawson calls an “objective attitude”, making the person towards whom we direct it no longer a full player in our moral games. This, I think, is exactly what the other carers had asked me to do. But, in Strawson’s account, this objective attitude is a temporary measure; there, in the care home, it was not.
Because although the carer’s advice, that I turn off my emotional responses to residents’ behaviour, was meant to apply only to those known to have dementia, in reality that just wasn’t possible. Nobody knew for certain who did or didn’t have dementia (only a minority of residents had been diagnosed). The cause of dementia, and there are many causes, can be confirmed by a post mortem alone, and the symptoms vary in relation to a number of different factors – physiological, psychological, environmental and social. Most of the residents had “good” and “bad” days, between which their behaviour could vary astonishingly. A number of them also regularly pleaded to be excused from responsibility – “I’ve gone barmy”, “Where am I?”, “I really don’t know what I’m doing”, they would plead. The Capabilities Scheme, and with it all the other imperfect assessments that could be carried out, brought little clarity; uncertainty was the only certainty.
And so the carers’ objective attitude became universal and permanent, extending from the least capable to those who seemed some or most of the time to know who they were, where they were and what they were doing. It was the safest thing for the carers to do, because to make a mistake might mean upsetting or confusing a resident, and so aggravating their condition – permanently, perhaps; fatally, even.
Still, the ambiguities remained. The most ambiguous case of all was Bill, a ninety-four year old who had run a care home with his wife before they had both needed to live in one themselves. Bill was, for the most part, lucid, witty and mischievous; and like the most lucid residents, he was also among the least mobile, confined to an electric wheelchair he could just about manoeuvre himself. Whenever I had the chance I would sit and chat with him: his enthusiasm for intelligent discussion was particularly striking, and we would often discuss theology and philosophy in detail. One afternoon he declared himself a follower of George Berkeley, the Anglo-Irish bishop and idealist philosopher for whom “the mind produces the image”. The conversation quite naturally turned to solipsism, and one of us, perhaps inevitably, brought up the problem of the tree falling in the woods – does it make a sound? A wry smile crept across Bill’s face as he countered with his own black variation of the question, “When a resident falls in an empty room, do they make a sound?”
Yet — Bill was not immune from suspicion. He would often rage violently at his wife, accusing her of all kinds of unreasonable and unpleasant things, loudly and in front of the other residents, carers and visitors; two weeks before I had arrived in the home, I was told, he had even tried to punch her in the face. How was one to know where intellectual vim became existential vitriol, their precise mixture, its volatility? The other carers were as unsure as I was.
The difficult question is this, I think: Can care take place, at least in this context, only when those being cared for are stripped of their responsibility, of their status as fully moral?
For therein may lie the very possibility of institutional care – and yet also its danger. “Danger” because, as even the most pat postmodernist knows, making somebody else an “Other” is often the prelude to doing violence against them; as in, “You’re not like us, so we can treat you differently,” or, in this case, “You’re not fully moral, so we can treat you like a child or an animal, or worse – a stone.”
Consider, for a moment, a recent philosophical debate. On Aristotle’s distinction between “animal” man (zoe) and “political” or “flourishing” man (bios): is it essential for a concept of the good life which might overcome the impasse of liberal rights-based ethics; or is it — has it been— a foundation for totalitarianism and mass murder?
For the neo-Aristotelian Martha Nussbaum, this anthropology allows us to conceive a good life distinct from the satisfaction of basic “animal” needs: there is a qualitative difference between a life which pursues political and artistic ends, and a life which can see no further than the next meal or the mere passing on of genetic material. This distinction also opens space for critique: by recognising certain forms of life as allowing only the minimum of human satisfaction, we can criticise them against the ideal of some more fulfilling political settlement.
On the other hand, for the Italian philosopher Giorgio Agamben, Aristotle – to put it rather bluntly – set Western history on its course towards the gas chambers. In the Modern era, Agamben claims, a “zone of indistinction” emerged which linked zoe and bios, where they had once been separate, making possible an easy slippage from one to the other; those who are fully human today are subhuman tomorrow, fit only for slave labour, medical experimentation, and murder. As Theodor Adorno famously asked whether there was a straight line of development from the slingshot to the atom bomb, one might similarly ask whether there is also a line from Aristotle to Auschwitz.
It would surely be a gross, even offensive, simplification to imagine that Aristotle, by having certain ideas, made Auschwitz inevitable. What this debate does show, I think, is how well-meaning moral categories (not unrelated to our case) can be subverted and go horribly awry. But this does not happen simply in the realm of abstract ideas, following some kind of immanent logic; no, it takes place in particular situations and environments — for instance, in care homes. I have suggested that uncertainty, which is always a part of our moral and social lives, can be a catalyst for this, especially when it becomes a near-absolute, as it does when you are placed in the difficult position of caring for so many frail, frightened people whom you know only partially, if you ever know them at all; whose autonomy and understanding are almost impossible to gauge; and this while trying your very best to slough the accumulated burden of all the cultural and social prejudice directed daily against the elderly and the infirm.
(And this without considering the economic uncertainty: the lack of necessary equipment (one automatic harness to move nearly forty immobile residents – no manual lifting – so most of the day is spent hoisting and then wheeling residents around, going up and down in the lift with the harness from bedroom to living room and back, not in meaningfully interacting with them); the poor pay and long hours; the almost untenable staff turnover rate; the staff sent straight from the Job Centre, their (the home’s and the staff’s) last resort…)
In the end, perhaps it really is the case that beyond the ideas and intentions of individuals, good or bad, the care institution itself, as a kind of supra-individual creating moral uncertainty, should bear the greatest responsibility for whether carers have the choice to be anything else. So why, as when we examine the banking system, is it to individuals that we look, time and again, when we blame for abuse and excess? Why is the idea of personal responsibility so much more seductive than the idea of structural responsibility?
In his famous third letter to Arnold Ruge, the young Marx explained, “the reform of consciousness consists entirely in making the world aware of its own consciousness, in arousing it from its dream of itself, in explaining its own actions to it”; and so might we see our questioning why we blame who or what we blame, whether it be individual bankers not the banking system, individual carers not the institution of care — so might we see this, as one necessary reform of consciousness to be made if we want, finally, to crack the most vital question of all: What is to be done?