Sofrimento social: a dor que nos causam

Segue aí a transcrição de uma conferência de Arthur Kleinman (Universidade de Harvard) a respeito de 'sofrimento social', realizada na Universidade de Milão/Itália. Kleinman é um proeminente estudioso do assunto. A dor que nos causam. Nas relações individuais e coletivas. Em macro e micro questões. A dor da ação de dominação, da agressão simbólica, das palavras e da imputação de inverdades, etc. A tristeza que se segue. A busca do trem, do vagão de primeira classe. A conferir. 

Arthur Kleinman

 (Harvard University, USA) 

The purpose of my talk today is to relate social theory to practical problems, in order to think through how to address them and how to intervene in them. And I think if you go back to the origins of the social sciences you will see that this was the intent of the great founders of social science - they hoped that humanistic scholarship and scientific scholarship would invent new theories to provide solutions to what seemed at that time to be intractable social problems.

Social inequality is one of the great issues of our day. You can see it illustrated in this photograph of a nearby protest in Greece - it was a celebration of your former premier's resignation. Or here, in this photo you can see the Occupy Boston movement, which is mostly comprised of students protesting income inequality in America. We know that the current phase of finance capitalism, which we refer to as neoliberalism, has magnified social inequality. There has been a rupture in the social contract between the middle and the working class, and the State and what we're now seeing in my country and in yours, and in Europe and in other settings, is a reduction in the size of the middle class, great pressure on workers, and the aggregation of wealth in the very very top of the income earners. In contrast, in China and India we actually see the middle class growing, not shrinking, but at the same time we see growing social inequality in their version of success under neoliberalism as well. In India both obesity and malnutrition are leading causes of ill health. These countries are experiencing radical income maldistribution: ballooning wealth alongside extreme poverty. The consequences of social inequality are a worsening health status nationally, increased alienation and marginality, increased migration from the poorer regions of the world to the richer and further erosion of the social contract between rich and poor.

Associated with this is a crisis of the urban world. You can see this urban crisis in cities as diverse as Beijing, Milan, New York and Boston. Virtually every major city can illustrate the consequences of this urban crisis in inequality with increased homelessness and joblessness; crime and violence; marginalisation of the poor, mentally ill and disabled; increased discrimination toward illegal migrants and the undocumented; and growing perception of social danger and insecurity. Homelessness is a particularly apt example of this crisis. In the USA, according to the National Coalition for the homeless, twenty to twenty-five percent of the homeless suffer from severe mental illness, and many have serious substance abuse problems. The de facto mental health care system in my country is in fact the criminal justice system. Stigma and social death keep the homeless, those with mental illness or HIV/AIDs, marginalised.

Historically, there have been many moments of grave social inequality and unrest across the various phases of modernity, most notably the Industrial Revolution, the era of mercantile capitalism, the great European migration to the USA at the end of the nineteenth century, the Great Depression of the 1930s and the post-war rebuilding of Europe. These different phases of inequality and marginality were all linked to various, diverse, expressions of capitalism and social change. These ushered in the transformation brought on by the First World War and the breakdown of social and economic order that paved the way for the rise of Fascism and Communism; the Great Depression; the post Second World War rebuilding of Europe and the development of the Cold War; then the end of the Empire; and most recently, the crisis of finance capitalism. But not all social problems are due to economic and political change. Caste abuses, class inequities, racism, religious intolerance and discrimination and traumatizing violence toward women and children have a long durée. Many are the result of increased vulnerability in the social world, because of mental illness, homelessness, stigma or the blighting of personal prospects, which appear to be structurally built-in to modern societies. Let's imagine the predatory inner city. I have the American city in mind, but this could be a city in Brazil, or in Asia, or in Africa, or elsewhere. Within shanty towns, slums and deteriorating downtowns we will see vicious clusters of broken lives. There will be a clustering of violence on the streets and also in the home; of poverty, substance abuse, depression, post-traumatic stress disorder (PTSD) and suicide. Vertical interventions into any one of these problems will fail because they won't address the entire cluster. These clusters illustrate, an important point I'm going to make in this lecture, that social and health problems cannot be divided, but require social and health solutions working together.

So how does social theory help us to understand the current state of the world? Can anthropology assist us here by allowing us to apply social theory to suffering in the world and guiding or nuancing our real interventions. Social theorists have, over the course of the last century, been trying to come to terms with both the problems of inequality and stigma, and the degree to which theorization about them will assist us in solving them. not all social theories are relevant, and not all are timely, but a few may be particularly relevant for the times we are in. I will discuss them here in relation to the problems we outlined above, because these problems will help us think. 

The theories I'm going to discuss here are the following. Those of Robert Merton, the sociologist of the United States, who developed the idea of "the unintended consequences of purposive action"; Max Weber and rationalization and the Iron Cage of Rationality; we'll look at a set of ideas that I introduced with some of my colleagues, Veena Das and Margaret Lock, called Social Suffering; we'll mention briefly Foucault's biopower, also quite relevant; then we'll look at my ideas about the local moral world; and we'll say something about Erving Goffman and later theorists' concern with stigma. I don't think to this audience I need to say much about Emile Durkheim's correlation of modernity with anomie, or of Marx and others' view of the unskilled proletariat and class conflict, or of Ulrich Beck's idea of the rise of individualism and the deepening of personhood.

Robert Merton was a great sociologist at Columbia University, in the United States. Merton asserted that all interventions, all policies, all programs, all bureaucratic actions in the world had unintended consequences, and that these unintended consequences are a result of a set of categorizable factors that can always make even the best of plans go awry. The first and most important reason for this is that actors always have a limited knowledge base. It's really important to start with an appreciation of how limited our knowledge base is, because we live in a time of great hubris. We believe that we have a tremendous, comprehensive knowledge base. At Harvard Medical School we tell our students when they graduate that in twenty years they will learn that half of what they've been taught is wrong: we just don't know which half yet. So there's a limit to our knowledge.

Secondly, there's the possibility of error owing to what Merton calls the "rigidity of habit". We became inflexible in our patterns, and it impedes our ability to clearly see the best course of action. Merton next introduces the idea of "the imperious immediacy of interest", that is, the fact that our current motivations are so imperious in claiming our attention that it narrows our field of vision, and we miss other relevant pieces of information. Finally, our values also impede our ability to predict possible outcomes, that's why we are very cautious when we have evaluations that they be conducted independently, lest the the commitments of those involved prevent them from seeing what is actually going on. Expectations often affect ultimate outcome. Our expectations, what we think will happen, lead us to believe that something has happened.

The next theory I want to bring up is Weber's "iron cage." Max Weber, the great German sociologist, wrote in 1920 that institutions would come to dominate society because they could quantify, generalize, and rationalize. Weber thought that there would be both good and back outcomes of this. On the one hand, we would have more logical decision making, and things would become more systematic. But we would also lose some of the social glue and the common sense that keeps organizations human, we would lose much of tradition and sentiment also the ability to use the rule of thumb. We would eventually be caught, said Weber, in an "iron cage" of technical rationality, a world of of algorithms, formulas and procedures that would come to limit our ability to be spontaneous, to come up with new solutions, or to go against the grain. This is a crucial insight for the contemporary world, because so much of it is structured and controlled by institutions.

Another framework I want to discuss is a theory that I introduced with colleagues some years ago. We called it "social suffering" and this theory makes five interrelated points. First that pain and suffering have social roots. Global and local economic, political, institutional, social-relational and cultural forces co-produce suffering. One example we'll look at is structural violence, which I'll define in just a moment. The second point about social suffering is that sometimes the very interventions that we develop in society to address suffering, can actually make it worse. Third that the experience of suffering is almost never solitary. It's usually interpersonal, and occurs within families and communities. Just think for a moment of the ravages of Alzheimer's disease, in which an elderly parent no longer can recognize the adult children. In that example where does the brunt of the suffering lie? If you speak to the seriously cognitively impaired parent in their eighties or nineties, they may not even be able to tell you that they are in suffering, but if you look at the adult children you'll see them cry, you'll see that that experience of suffering is truly interpersonal. This is true of many conditions. Fourthly, by using this term I mean to link social and health interventions and to say that you cannot have health interventions without social interventions. They must go together. And the fifth point is to argue that these problems, which on one side look social, and on the other side look like health problems, are simultaneously, moral, political and economic.

Now I mentioned structural violence as one of the types of social suffering. So what do I mean by that? Here I quote my former student and current colleague Paul Farmer who is a sort of icon of global health in the world today. It's very interesting that the central person in global world health today, in the world, is a medical anthropologist. Paul has written that "Structural violence is suffering that [is] structured by historically given and usually economically driven processes and forces that conspire whether through routine, ritual or, in more commonly, the hard surfaces of life, to constrain our agency". For many, including most patients and informants, says Paul, choices - both large and small - are limited by racism, sexism, political violence and grinding poverty. So the idea here is that poverty is a major risk factor for infant and maternal mortality, adult infectious diseases, and mental illnesses. If you wanted to see the major risk factor for ill health in the world, it is poverty due to structural violence.

Many of the theories I've mentioned above, including the iron cage, social suffering, and structural violence, allude to how suffering can be intensified by bureaucracy. There are number of other examples of this. My anthropological colleague at Harvard, Michael Herzfeld, has introduced an idea of bureaucratic indifference, the notion that bureaucracy leads to a kind of coldness and lack of sympathy on behalf of bureaucrats not necessarily because they're bad people, but because all of us caught up in bureaucratic rationality start to become indifferent to the needs of other humans. Another example of this that I give here is that post-traumatic stress disorder, among for example the veterans in my own country who fought in the Iraq and Afghanistan wars, at first was not accepted for disability claims because the bureaucracy said: "Well, this is all in the mind, it's not in the body", as though they were unwilling to accept that suffering was real no matter where it was located. This was a very dismissive approach, which is changing fortunately over time.

Biopower is also relevant here, though I know I do not need to go into it in detail for this audience. Michel Foucault wrote that "Biopower designates what brings life and its mechanisms into the realm of calculation. Biopower refers to controls over life denoting how life is calculated at the level of population and the body". And remember Foucault's great idea, further developed by Ian Hacking, was that the development of statistics was a means for the state to control populations. Through it they could understand who the population was and how to manipulate it. In the same way we see those controls brought down to the level of the body. 

The best example of the effect of brainpower on the body doesn't even come from Europe; it comes from China. During the Cultural Revolution, every woman in every village in China had to post their menstrual cycles on the door, so that the population control people could calculate whether or not someone had missed the menstrual cycle and might be pregnant. That is an extreme example of the use of biopower to control a population, and in this case, its fertility. It is important to recognize however, that Foucault recognized that biopower could also be positive influence on life. It could help us better understand population-level processes like ageing and illness, and perhaps assist us in crafting better public health interventions. But at the same time he was aware that it produced new forms of governmentality that worked directly through the body, what medical anthropologists now call "embodiment of the political".

One of the last theories I want to introduce is my idea of local worlds. All anthropologist work with the idea of local worlds, that we live in networks, we live in communities, we live in neighbourhoods, we live in villages, and these worlds are open to the outside and affected by external events, but nonetheless remain locally very influential on a daily level. The important addition that I've tried to make to this, is to argue that these worlds are fundamentally moral because it is dignity and daily experience at stake for groups in those worlds. The moral, as I use it here, is not the same as the ethical. The moral is about our local practices and what matter most to us. This is an anthropological understanding and an ethnographic understanding of the moral. Part of that understanding is the idea of subjectivity, that the inner world of the person also includes not just feelings and ideas, but deeply held values that come together with feelings which we usually refer to with the term "sensibility".

The last theory I will mention is Erving Goffman's formulation of stigma. He argued that stigma involves a "discrediting" of the person or the fact that the person has a hidden quality that if revealed would discredit a person from being part of the normal social world. We have learned that stigma is transmitted not just by populations generally, but by bureaucracies and families themselves, both through and across power differentials. At its worst being stigmatized can function as a kind of social death, a social death in society where the stigmatized lack all social efficacy, all social status and their moral capital itself declines almost to nothing.

Now I said that the purpose of going over theory was to suggest what types of interventions can come out of, or be informed by, theory. I want to go further and claim that if social science and humanities simply identify human problems without responding to them, without becoming involved in action, then I believe that in the future there will be no social science and no humanities. We must participate in the world, not just to illuminate the problems, but to guide toward solutions. That is the direction in which our world is going, and it is where the university is going, and I believe that the theories I outlined above are the kinds of ideas that can help us in making an impact on real world problems.

So, how can we use the theories I've laid out, to address the urban crisis I mentioned at the beginning of this talk, and to help us design a new political contract. This is not my main topic for today, but surely this is a very important thing. We have a vice mayor present here today from the city of Milan. We need to think about what we might want this new political contract to look like, because the one we have is so broken. Clearly we need a new understanding of economic policies. But we also need new social and health policies and, in my domain, mental health policies. What I want to emphasize is not the policies and the programs so much, but from an anthropological standpoint, the question of how cultural processes come to take on such a central value for policy and practice in our time. I will look at one in particular. It's not the only one, but it is the one that comes closest to my own interests and work: the practice of caregiving.

In order to do this, we'll have to start with moral experience because I think this is what anthropology contributes today that is so important. It's an entirely different way of looking at the moral than we have had come out of philosophy and intellectual history; it's the ethnography of actual, real genuine moral experience. The problem with ethics, which is a high level discourse about values is the primacy of abstract principles. There are good principles like social justice, etc. They are very good principles but they are extremely abstract, they become almost utopian. Moral experience is not easy. We all live in the world. We know that moral experience is about real worlds and real people interacting not in utopian times, but in times that are dangerous and uncertain. And what is needed is an anthropological approach to real moral experiences that fosters reform and caregiving for others in need. Anthropologists, as well as psychologists, sociologists, psychiatrists, physicians, public health experts, lawyers, engineers, have a moral responsibility to go beyond mere understanding. All of us have a responsibility to intervene, to do something in the world.

But at a cultural level very few of us are going to be huge heroes in the world, certainly not me, and I think most of us. A hero is someone who is able to change the world in some way. Most of us are not going to change the world. So I want to use the idea of the anti-heroic, the anti-heroic, here I follow the ideas of Dostoyevsky, Gramsci, and the great American literary critic Victor Brombert about the anti-heroic. And also the late Tony Judt, when he wrote about the burden of moral responsibility for public intellectuals. Now the elements of the anti-heroic are critical self-reflection (a self-reflection on the moral experiences that we are actually going through, a critical self-reflection), an aspiration for the ethical (an aspiration for something that goes beyond the local), strategies for resistance, and alternative action. Anti-heroic actions don't change the world, but they make clear to others what needs to change and they resist cultures of collusion, accommodation and cynicism. These actions perturb and disturb the status quo, the taken for granted, in ways that make us uncomfortable with our own passivity and resignation. For example, they reveal hypocrisy to us. And they legitimate alternative ways of living in the world and offer new and different personal answers to the question: what is an adequate life.

Now I want to turn to a subject from my own area of specialization, to the ideas of caregiving and presence. Presence is an idea that comes out of the anthropological study of religion and also of the anthropological study of medicine, that looks at the way that we become fully present to other people, the way that our humanity comes forward. And the illustration I have in mind is actually a practical example of caregiving from my own experience. I draw on my experience as a doctor caring for patients for many years. But more than that, and more recently, I have in mind my experience, as a family member, of taking care of my late wife who died last March after suffering for a decade with Alzheimer's disease. For much of that time, for all but the last few months when she was in a nursing home, I gave her care daily. And by giving care here, I mean the most practical acts of caregiving. I mean bedding, feeding, helping to walk, assisting in every single way. I want to suggest that the acts of caregiving, the very practical acts, the corporeal acts, the material acts of caregiving are what define caregiving; not the theories of caregiving, but the material acts that bring our presence as human beings forward toward someone else, that brings forward our humanity. I am suggesting here that caregiving produces a kind of attitude, a kind of positioning toward the world that goes beyond illness, goes beyond disability and is in fact the moral undergirding, the moral basis for addressing the social problems and coming up with the social solutions that I have mentioned.

I define caregiving as attention to the needs of the child and the elderly and the invalid, and say that caregiving has two components. On a practical level, most of it occurs in families, with partners, children and families. There can also be a professional level that involves social workers and nurses and home health aids and occupational therapists and physical therapists as well as physicians. The majority of caregiving around the world, however, is done, and has always been done, by families.

I spoke previously about the practical, physical acts of caregiving, which are central to it, but clearly along with that, along with protecting and giving practical support there are also the practices of providing emotional support and moral solidarity as part of caregiving. I talk about this in my book What Really Matters. Here I am trying to relate the idea of the moral, and of the moral life, with caregiving. Life is about values, is about what we practice, just being alive, negotiating with other people, involves us in engagements over the things that matter to us, those of those lived values. That's what moral experience is. And that's where caregiving takes place. But caregiving doesn't just take place in a moral world. We also have an internal moral life and this is why anthropology needs psychiatry and psychology, because moral experience cannot be seen only as social. It must also be seen as subjective and individual. Our own moral life inside implies not just our capacity for choice, but a daily sense of what my old friend, the late French sociologist Pierre Bourdieu, called "le Sense du Pratique", a practical sense when we are doing things of when they feel right and when they don't feel right. That's part of our own moral life.

I'm suggesting that the important study of social suffering is advanced by an anthropology that confronts issues that go beyond statistics and individual cases, in order to create narratives of resilience, resistance, and lived moral experience. It is these stories which will tell us about human aspirations and about the most defining quality of humans: hope. In order to understand how social suffering is manifested in chronic illness settings, we require an anthropology that's not limited to cultural critique, nor one that is ethically relativist. An anthropology can be epistemologically relative, and a practitioner can be a relativist ontologically, but none of us can afford to be ethically relative. At some point we must take a stand, otherwise our discipline is inhuman, non-human, and irrelevant to humans.

This anthropology must advance a new moral contract in society, one that can be the basis for new ways of thinking about social policy and social intervention. In the past anthropology has been separate from policy making and program delivery. But in our time it is coming closer and closer to that domain and that is the way I think it should be. These insights must come to play a role in how we create policies and deliver programs. If we extend caregiving beyond health to the rest of social life, then we can see it as an appropriate emotion, value, and practice through which we can address some of these social problems. Caregiving becomes the moral equivalent of political, economic and social reform and the moral basis for humanizing policies and programs. Caregiving for the homeless, for the mentally ill, for substance abusers, for traumatized migrants, for sexually trafficked women, for abandoned children, for the infirm elderly and for other marginal groups. What are the policies and programs that grow out of caregiving practices for these marginal groups?

How can caregiving as a practice against social suffering re-imagine and recreate the human in society just as we see it doing in my own field, the medical anthropology, in the health domain?

To evoke the sense of the power of caregiving that I am trying evoke, I will show you some examples from art. This image is a photograph of Kathe Kollwitz's piece, Lamentation, to give the feeling of the physical, visceral quality of suffering, all of us suffering. The next image is Rule of the hospital of Notre Dame in Tournai from the 14th century Flemish painting. Here, Rembrandt, perhaps the greatest painter of caregiving, gives us a domestic scene. Rembrandt is looking at caregiving in the setting of his own home. The next one is Sir Luke Fildes, The Doctor, at the end of the 19th century when the doctor could do virtually nothing, technically and pharmacologically, to help this dying child. In this image we see a sick little girl and in the background you see the mother, broken down, and the father with his arm around the mother. All of this is about caregiving, and about the emotional and the moral quality of caregiving in the medical practice.

Here is another great Rembrandt image of caregiving in love and marriage. This is the so-called, Jewish Bride. This is not a lustful act of the husband putting his hand on the breast of the bride but this is a moral connection, this is love.

This is Rembrandt's great picture of Christ [title: The Head of Christ]. I think it is one of the greatest pictures of Christ because it doesn't show Christ as a God, it shows Christ as a human being and emphasizes the humanity, the humanity of the human being. And after all that is what the Pieta was meant to emphasize, it tries to show that suffering is interpersonal, that it exists in the space between the sufferer and the person giving assistance. This is Rembrandt great portrait of the face of a Portuguese physician in Holland at that time, Ephraïm Bueno [title: Portrait of a Man, probably Ephraïm Bueno]. You look at his face and you can see the attention to other, the compassion, the readiness to feel as well as to act.

Historically from the Chinese tradition we see in the Yan Kang Caves, caregiving illustrated. Caregiving in Afghanistan, in Japan, in Africa bring us to contemporary pictures of caregiving. This is taken by colleagues of mine in our own Harvard NGO in Partners in Health, which is tied on one side to anthropology and medicine, on the other side to delivery and caregiving. This is the family around a dying patient with multidrug-resistant TB and HIV. 

And this brings me to my last point about caregiving, all illustrated an image from when Picasso was painting faces like African-eyed masks, of a medical student with one eye open and one eye closed. This is what I mean by subjectivity tied to the moral world. So one eye is open to the moral world because everyone of us has to get on in that world and remain attentive to it. As we say in medicine you feel called into the stories of the sick, that exerts a pull on you. That's the eye open and attentive. And the other eye is closed for self-protection, to protect us, to keep us with the sense of self-interest. That tension is part of the struggle in the moral world that I'm positing.

We can think theorize this as the divided self. This concept has historical roots in the work of the psychoanalysts or the anthropological psychologists like William James, W.H.R. Rivers or even modern filmmakers like Woody Allen. The idea that the interiority is split and discordant if not downright contradictory and that personhood is fractured and at odds with itself and that different local worlds call out different aspects of personhood. Henry James talks in his short story The Middle Years, and in his novella the Aspern Papers, about a dying writer who is being taken care by a young doctor who has a secret. His secret is that he wants to be a great writer like the dying writer, and the dying writer tries to share a truth with the young doctor, about caregiving, writing and living in the world. He says: "We work in the dark, we do what we can, we give what we have. Our doubt is our passion and passion is our task."

That means, if you interpret, the end that our task is doubt, that's the academic task, that's the medical task, that's the professional task, that is the social task, that's the personal task. The task is doubt, to continue calling things into question that's what we have learned. I am suggesting to you that out of that doubt must come some kind of moral action, so then in my own fields medicine, psychiatry, global health, China studies, social action must emerge from doubt and what I'm arguing here is that the anthropology of caregiving is one of the ways we can think about repairing societies and coming up with social actions in the future.

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Fonte: Centro Studi Sofferenza Urbana/Universidade de Milão: http://www.souqonline.it/