Reinventing the Good Life

Front matter

An empirical contribution to the philosophy of care

JEANNETTE POLS

*UCLPRESS

Contents

List of tables Preface

1 Introduction: on the shifting specificities of the good and the bad in everyday life

2 Folding words and practices: methodological notes on exploring the good life Part I: Shaping the good life —- and the end of its theorisation

Part III: Researching the good life

10 ‘Quality of life’ and everyday values: living with ALS and a feeding tube

11 Petrarch's practice of letter writing: the good life in research

12 Reinventing research practices for studying the values of everyday life

Acknowledgements Bibliography Index

241 265

341 349 365

List of tables

3.1 Forms of dignity

LIST OF TABLES

Preface

Which stories can be told and which cannot? Are there particular times and places in which some stories can be told and others can’t? Why is it that some things are impossible to talk about while tales of other things flow like rivers? How do words relate to worlds and vice versa? Where might such connections fail? This book is about folding together words and practices, the complex ways in which this may — or may not — be done, and to what new insights such foldings can lead. Not until very recently did I realise that the intricacies of storytelling practices and repertoires have fascinated me since I was young.

Ever since I can remember I have wanted to become a writer. But my first novel, about the adventures of two horses, could not be written. At the age of 10 or so, I was lacking the necessary skills. This was a story that remained untold. Before that were other stories that could not be told, but this time because they were too painful, such as the story about the death of my mother. I became very good at not telling this story.

When I was 12 or so, I encountered another kind of untellable story. The heroes of my favourite books were guys: great guys, young and courageous adventurers, who rode their giant black horses through dense forests and over mountains so high that it was difficult to breathe. But while Tiuri went out, Lavinia had to stay home, safe in her castle, if she did not want to be murdered or raped.

Why could girls in books not go on adventures? Of course, at that time I could not say something like ‘““The adventurous woman” was a subject-position that still had to be invented in literature.’ This was another mystery about how some things could not be put into words.

My plan as a student was to learn about care practices, about how patients are positioned within them, and especially about the utterances and doings that are, or are considered to be, ‘mad’, enigmatic or irrelevant. During my training as a clinical psychologist, however, I quickly learned that there was a lack of academic tools for studying such particular concerns despite the multitude of tools and framings that were around. I

PREFACE xi xii remember attending a class on cognitive psychology where the professor casually stated that ‘humans beings are, after all, integrated cognitive systems’. I gazed at the professor in astonishment. He was unperturbed and continued his lecture. His friendly face and posture were framed by schemes and tables with arrows in all directions that showed the various pathways of human thinking. But something was alarmingly wrong, I felt at the time, if scientific stories about humans ignore bodies and feelings.

I started my philosophy studies and a world of new stories opened up. I learned about the use of language and about different styles of doing philosophy. The Habermas—Foucault debates were raging at the time, which, on the one hand, claimed that the transparency and universality of language would eventually lead to a general consensus among humans. On the other hand, however, were claims about the situatedness and relationality of language and the importance of local use-practices in which words get their meaning, which demonstrated why such a general consensus could never be achieved. These stories evoked different realities that could not be reduced to one another.

Social theory at the time specialised in critical analysis, and this ‘critical’ style was to be taken quite literally. We students were taught how to tear things apart, however elegantly done. This approach, however, did not consider the question of how to construct new stories. But then my fellow philosophers and I read Donna Haraway’s Cyborg Manifesto and Annemarie Mol’s ‘Who knows what a woman is’ (in Dutch, ‘Wie weet wat een vrouw is’). Annemarie was doing her PhD in the same philosophy department where I was a student. That paper provided several very convincing and appealing provocations. Medicine (anatomy, physiology and genetics) did not know and could not agree on what a woman is. Sex was not so easily quantified as statisticians thought it could be. Sex was underdetermined.

Imagine what possibilities this insight opened up for us! If nobody knew, then this gave ‘us’ (wink wink!) the possibility to create something new, an opportunity to escape existing and powerful categorisations. It created space for new stories and academic adventures to emerge.

Meanwhile, some of the older philosophy teachers were lamenting the death of the Subject (big S) and the loss of Grand Narratives, Theories that Comprehend Everything in a Coherent Way. Convincing arguments claimed that the modernist dream could not become reality, and these philosophers lamented the waning of such narratives.

We members of the women’s studies group in philosophy had no patience for such nostalgia. We had work to do. As cyborgs, or as not so gender-determined researchers, or whatever, we were looking for narratives that could take us beyond the dead ends of critique and essentialism: these had to be stories that could acknowledge everyday care practices, articulate modest attempts at improving situations and highlight the relationality of identities. Rather than pointlessly criticising the doctors, nurses and patients we encountered in our research, we searched for new types of stories, stories that could include people who could not speak in understandable ways, let alone fill out questionnaires. We searched for different ways to care for people who could not be cured and to understand them better, while also joining forces with their caregivers in thinking about how these patients could live a better life. And, slowly but surely, this became the narrative I started to work on in my research. In hindsight, I can see that these stories were about trying to make the best out of situations that were tragic and could never be ‘fixed’. They were stories about situations in which there were no words yet to describe or interpret them, or when there were words that demanded further interpretation: the silences of the long-term psychiatry patients, the mundane talks about the weather in nursing homes, the invisible practices of nurses who always seemed to know what to do, or the plethora of words about the latest trends in care work that did not appear to refer to anything concrete (‘We place the patient at the centre!’). And there were the dumb technologies that nudge people into doing things, intentional or not, good or less good. I had found my ocean of stories and silences and sought ways to navigate its waves and depths.

This book brings together and develops the multiple insights gathered over many years of research on different care practices in the Netherlands, and explores social theory to trace the history and fate of everyday life values. It seeks to develop academic approaches to learning from specific situations while simultaneously ‘making a voice’ for silent things. The book attempts to address these issues, which, as one might expect, open up yet more questions, such as the intriguing silence in academic studies about the aesthetic values of everyday life. In everyday language, we often praise the beauty, propriety and niceness of things, but in academic discourse we no longer theorise such qualifications and their social implications.

The stories in this book are complex. They explore how attempts to know something are as much ways to create something as they are courses for action. Look at this quote from the musician and Black civil rights activist Nina Simone: 4 tell you what freedom is to me . . . No fear!” Where Western philosophy discusses freedom as the breaking down of barriers that limit individual autonomy, Simone redescribes freedom as a way for opening up entirely new modes of thinking. This form of freedom — having no fear — gives rise to fresh questions and radically different

PREFACE xiii xiv answers. Where does this fear come from? What is involved in inducing it? Can it be softened? Eradicated? Simone’s quote is not there to represent a final truth but instead is an example of the strength and necessity of generating possibilities for embarking on new adventures in thinking, telling and doing.

1 From Nina Simone: A historical perspective, a documentary produced by Peter Rodis (1970).

Introduction: on the shifting specificities of the good and the bad in everyday life

The bathrobe trick’ for people suffering from chronic obstructive pulmonary disease (COPD)

Mrs Jacobs: When you're done with the shower, well, you towel off [demonstrates drying her body and her hair], but she [her webcam friend] said: ‘You can put on a bathrobe and wait till you’re dry, you won't catch a cold.’ That takes no energy but drying yourself does! You have to learn to think like this. What would you do? After a shower, you would grab a towel. But now I take 15 minutes. The walking frame is near the door, I bring my phone in case someone calls. I take it easy and recover with my bathrobe on. Dry up a little, then put on a little deodorant, pat a little cream on my face and then I dress. And I shower in the afternoons. I lie down for an hour or so, and shower after that.

The fieldnote above describes the everyday event of taking a shower and drying the body. To many of us, taking showers is one of the most mundane activities of everyday life. It is rarely worth discussing. But for people suffering from COPD, even mundane activities such as showering can be major obstacles because of the energy they require. People suffering from COPD are quickly out of breath due to this severe lung disease, which ruins the plasticity of the lungs and makes breathing — and the uptake of oxygen — difficult. Here, Mrs Jacobs discusses the suggestion of using a bathrobe to save energy. She has ‘learned to think like this’ — everyday activities use energy. But this lesson also opens possibilities for saving energy. Wearing a bathrobe to save energy sounds as trivial to many as it is important to Mrs Jacobs. It makes an important difference to the goodness of her life and the things she can do in her day. Wearing a bathrobe creates space for doing things that matter to her besides showering. It relieves suffering and makes the unavoidable activity of bathing a less stressful event. It is easy to see that ‘the bathrobe trick’ is a boon to Mrs Jacobs’s life.

But where do suggestions like the bathrobe trick come from? Where can we find or learn them? For Mrs Jacobs this was a tip from a friend, a fellow COPD sufferer, whom she met at the Dutch national rehabilitation clinic for people with severe COPD and asthma. Mrs Jacobs’s friend, in turn, learned the trick from her COPD nurse, a specialist who cares for some Dutch COPD patients, but not all: access to such a nurse depends on where you live and what care is available there. This makes the bathrobe trick a type of knowledge that is both very important yet hardly ready to hand for people suffering from COPD.*

Clearly, bathrobe tricks are not the object of medical research. Medical research examines the effectiveness of medications and other interventions in and on the body, but not of everyday activities such as bathrobe tricks. And this is for good reason: it is a harmless intervention that anyone can try out in order to see if it works in their situation. No harm done if it does not work, much gain if it does, and money for expensive clinical trials can be spent in better ways.

But the apparent simplicity is deceptive. Because where might one learn about bathrobe tricks? There is no systematic collection of these practical types of knowledge, which cost little and are easy to try for everyone who thinks they might benefit from them, and that may greatly improve the everyday life of people with chronic disease. These practical techniques are part of the knowledge of nurses, and they are transferred orally or by working with experienced colleagues and patients. But this knowledge runs the risk of being lost or of remaining only locally available. Why has there been no attempt to systematically collect the types of knowledge that are aimed at improving the everyday life of and care for people suffering from chronic disease?’ In this book I use the term chronic diseases as a shorthand for multiple diseases, handicaps or problems that are persistent and that may even deteriorate rather than get better. As there is no cure for chronic diseases, one has to learn how to live with them as best as possible. Yet there are very few methods to create and gather knowledge about how to do this well. How may we understand a good life when health problems do not go away? And what can we do to improve such lives? These questions motivate my research and this book is one of my attempts at answering them.

What gave rise to the writing of this book

The book emerged from my puzzlement about the apparent lack of words for expressing — as well as academic tools for studying — the things that are of value to everyday life and to the care for or by people with chronic diseases in Dutch care practices and in the literature more generally: valuable things such as saving your breath by drying in a bathrobe.’ The aim of the book is to learn about the values of everyday life, about the things that are important in daily practices. I want to reinvent repertoires for studying such ‘values in practice’. The need for reinvention stems from a lack of academic repertoire to study everyday life values. There are two main academic discourses surrounding chronic diseases and treatments for people who suffer from them. The first is a medical discourse, which concerns itself with the underlying disease that should be treated and cured. The second is an ethical discourse that has emerged within medical institutions. This ethical discourse has placed much emphasis on safeguarding patients’ autonomy, initially as a way to protect people from overly enthusiastic doctors and medical researchers, and later to include their voices in treatment. Alongside these academic discourses there are also more popular narratives of ‘wellness’, which have often emerged from the private sector. The term wellness denotes various approaches, aims and practices for making life better, even if there are no cures.

Wellness practices may resemble the everyday attempts of people with chronic diseases to improve the quality of their life. Wellness narratives often emphasise the role of feelings, beauty, health, wellbeing, fitness and so on. Yet some of these narratives have become almost completely individualised, psychologised and commercialised. The imperative of such narratives is that individuals ‘have to feel good’. Yet wellness narratives rarely conceptualise life as being in relationship to other people, although I do notice the frequent use of the word ‘love’; this, however, often refers to self-love. Rarely are their claims discussed and put to the test in academic research. There is work on wellbeing, even on happiness, and approaches such as mindfulness have become professionally accepted. Yet wellness narratives rarely raise questions about how to collect and share knowledge, partly due to an ill fit with state-of-the-art scientific methods.* One could also say that there are myriad forms of more or less inspiring and useful knowledge that inform practices of wellness.

So how can we learn about the values that make everyday life as good as possible? Everyday life is a theme in ethnographically oriented sociology, geography, science and care studies, and anthropology.° This book builds upon this work by studying the mundane practices that are involved in ‘health care’ or ‘health science’. In this book I try to understand everyday life, roughly, as a sequence of concrete, often mundane and always specific, observable events that emerge from what people and things do somewhere. I juxtapose everyday doings with abstractions, generalisations or ideal types.° In the bathrobe trick example, I relate the observable event of taking a shower and drying the body in a bathrobe to more general observations about, say, how people with COPD quickly run out of breath due to a loss of lung elasticity. Everyday life is as important to every person as it is unheroic to write about. It concerns the hidden work of care.’

Not much has been written in present-day academic research about the values that are pertinent to everyday life and how to study them. A value signifies that something is important, and an everyday value signifies something that is, or is made to be, important in day-to-day activities within a particular setting. What makes everyday life ‘good’? There are a number of approaches one might take to answer this question, such as the ethics of the good life. Such an ethics has things to say about the everyday, but its present-day understanding focuses on Aristotle’s virtue ethics. This framework conceptualises care in prescriptive rather than descriptive ways (‘This is what you should do to be a good caregiver’). Another approach is the organisation of moral debates, which stage discussions between professionals about matters of everyday life in medical and care practices. Such moral debates are indeed good examples of discussions of everyday life concerns. However, these discussions also tend to remain within the location or practice in which the debate took place. The participants rarely publish the things they discuss for others to learn from.

In contrast to wellness narratives, the relationship between readers and narrators on matters of everyday life is more obvious in the ‘human interest’ pages of journals and magazines. Here the emphasis is on the more difficult side of life. Such stories touch on having bad luck, living with disease, the occurrence of death and other difficult situations, but they also discuss matters of everyday morality and etiquette, such as friendship, sexuality, loneliness and common tensions in everyday life.® These stories provide an important repertoire for engaging in empathetic relationships with others because they provide language for describing everyday life concerns that are difficult to address otherwise.

The genre of problems addressed in these ‘case histories’ describing the situation of particular individuals rarely reaches academia. Exceptions are found in literary studies, where biographies are written and discussed, literary and cultural critique is practised, and sense is made of historical contexts and their impact on individuals, who are often the hero or heroine of the story. Biographies, however, often depict exceptional individuals. Yet another genre of writing about specific cases is the ‘clinical case report’ that describes individuals with exceptional diseases. This form has a long tradition in medicine but is waning now. Qualitative social science works with case histories in a different way, opening up the question of how to address specificities of events and situations rather than centring individuals. The book addresses how the study of specificities may be thought of as relevant to other situations than the ones researched.

Modes of generalising

One reason for the academic silence on everyday life is that the positivist sciences struggle to address specificities, or attempt to filter out specificities in their striving for generalisation.’ Everyday life and its values are different for different people, and these may be seen as ‘noise’ in quantitative epidemiological studies looking for general trends. Epidemiology is the main approach in the social and medical sciences in the Netherlands. The positivist sciences study people and diseases by generalising across populations, not by considering particular situations or practices. The dominance of the epidemiological approach obscures approaches that seek to obtain knowledge about specificities and the important role they play.'°

Another issue that contributes to the neglect of ‘living with chronic disease’ is that the dominant discourse within the medical sciences focuses predominantly on finding cures rather than understanding how to live with diseases that do not go away. At present, this curative model is strongly supported by medical research that emphasises effective treatments.'' These effects are isolated by studying phenomena under controlled conditions and by using clearly defined methods and variables that erase ‘noise’, such as possible biases of the researcher or trivial differences between test subjects. This sits uneasily with the contingencies and specificities of everyday lives as well as clinical practices. Attempts are being made to include the values of patients in epidemiological research, particularly as outcome variables when testing medical interventions. Quality of life is probably the best-known example.”

In its current embrace with evidence-based medicine, epidemiological research has a lot to say about statistical generalisability. But it says almost nothing about how to use this generalisable knowledge in concrete cases of clinical practice. By adding things up and averaging, individual differences that are not deemed relevant are filtered out. Only relatively simple interventions with clear and pre-definable goals, such as medications, can be evaluated. But it is not always clear what such general guidelines can do for individual situations. What does it mean for a person that a certain intervention increases the quality of life for many? How does it do this, and under what conditions? The clinical question is always what a treatment might mean for this patient in this situation. But present-day medical science does not offer many answers to such questions,'* other than invoking unspecified notions of ‘professional expertise’ and ‘patient values’.'* More helpful answers are, however, found in studies of clinical practice where knowledge is transferred ‘by the bedside’, taking the complexity and specificity of each particular case into account.

Modes of universalising

Philosophers and ethicists likewise tend to be silent about specificities and hence about the values pertinent to everyday life, which are always specific rather than abstract. They are interested in universal concepts, or in establishing general norms that can be useful for situations that are described abstractly. For example: Heinz is poor and cannot pay for the medications that his wife needs to stay alive. Is he morally allowed to steal them? The question is formulated as a general question about stealing. Other elements are left out. For instance, Heinz knows the pharmacist and may have a good chat with her about possible solutions. Ways to make patients’ concerns audible in ethics are often based on the principle of autonomy, a principle that serves as a procedural safeguard to allow patients to say what they have to say, and to grant them the formal right to decide for themselves if they want to accept treatment or not. Medical ethics is often about values, principles and norms that are valid for everybody, rather than about the values that are specific to certain everyday situations.‘° Moral case deliberations, in contrast, resonate with the concerns of philosophers who take philosophy as a way of living. These philosophers have studied everyday life practices and form an inspiration for this book.

Philosophy as the practice of a good life

Philosophy has not always been about abstract theory. Philosopher and historian Pierre Hadot shows how ‘theorising’ in philosophy started during the Middle Ages with the founding of universities.” This scholastic tradition came into being and created a ‘professional’ philosophy for specialised scholars, which served as an alternative to the classical philosophy that was first and foremost a practice of life aimed at achieving wisdom. Classical philosophy (and also later humanist interpretations of it),"° Hadot shows, always started with the practice of examining questions. The theory would follow the practice, to reflect on problems and concerns and to find justifications on how to act. Philosophy, Hadot argues, despite present-day understandings of philosophy as the exegesis of texts or the analysis of concepts, was traditionally about the practice of living a good life and teaching this to others.” The specific aims varied for different schools, but Hadot shows that the general aim was to gain wisdom, or ‘to feel united with others and with the universe’, by changing the self for the better and by educating others. The primacy of living the good life over the development of theory was deemed so important by proponents of philosophy-as-practice that they valued doing things over writing things. An example is the ancient Roman senator Cato the Younger, who left behind nothing in writing — even if lots has been written about his ways of living a good life and educating others. The historical study of philosophical schools and practices also shows the importance of conversation and conversation partners. Philosophy as a way of living the good life was a relational thing: it was directed towards an audience. The aim of Hadot’s book is to reconsider the importance of philosophy as a way of living — that is, as a practice of everyday life.

An important question for this book, which seeks to learn about the values of everyday life, is how to understand the normativity of writing about good lives. Here, normativity is not about general prescriptions for how one should live. The aim here is not to provide sets of rules on how to behave, such as, for example, all people should do X, or all people with COPD should wear bathrobes after a shower. These philosophers examined if something is true and good, and under which circumstances. This was a task they set themselves. The good-life-as-practice was informed by its relationship with concrete events and obstacles that needed to be overcome. These philosophers examined concrete events because they wanted to address questions about how to live well. The aim was not to present stringent doctrines. Theorising was contingent on the problems at hand and aimed to make sense of the things that happened. Wisdom was an ideal that might never be achieved, and would maybe even cause suffering for those pursuing it, but this did not lead to passivity. Rather, the good life was characterised by a persistent striving for the examination of good and the true in circumstances that one could not control. The resulting theory was hence not necessarily coherent, nor was it primarily a theory about the world. It was a theorising in the world. It was not a theory about how one should think but an exercise in good thinking. It was a set of contemplations on situations and themes, created in an active relation with the world and born from the desire to generate wisdom about how to live. It was a doing. General universal claims sit uneasily with this emphasis on improving concrete situations.”°

Imperfect life as a good life

In this book, I will develop the consequences of such a ‘theory of practising the good life’. I take the lessons of Hadot to heart by looking for inspiration in classical philosophy as well as in later humanist interpretations in order to think about the good-life-as-practice. I will analyse work from Hadot’s student Michel Foucault, who developed the theme of the good-life-as-practice in his later work. Hadot points out the similarities between the various universal missions of the different schools of the good life. He even manages to interpret Kant’s life and his categorical imperative as an example of a universal striving for wisdom and the good life (‘act in the way you would want everybody to act’). By moving from exemplary lives to ordinary lives, however — as I attempt in this book - specificities, inconsistencies, contingencies and imperfections rather than theoretical coherence are foregrounded.

I will situate the difference between philosophical theory and philosophy-as-a-way-of-life as being part of the distinction between modern and pre-modern philosophy. Hadot argues that modern philosophers, such as Leibniz, Descartes and Spinoza, who worked outside the universities, were also practitioners of philosophy as a way of life. Rather than debating the exact distinctions, in this book, which seeks to learn from practices, I will instead make a distinction between philosophers who foreground practice — or theory about practice — and those who contribute to systematic (modernist) philosophical theory.

To do so, I will attend to the conceptual forms or ways of constructing the good life rather than to the substantive ideals of certain versions of the good life. I am not looking for doctrines, judgements or prescriptions on what it means to live well, but I do seek to understand attempts at living well, and find out how we may study these attempts. How do people pursue a good life? How may we study ordinary lives as oriented towards something good without a priori criteria for judging these lives as successful or not? What can we learn from pre-modern ideas about goodlives-as-practice and how might we apply these insights to present-day concerns about the everyday lives of people with chronic disease and their caregivers? What might those living with chronic disease learn from philosophy-as-practice? And vice versa, what may academic philosophers and social scientists learn from the lives of people with problems that do not go away?”! The case of people with chronic disease is exemplary of a problem that cannot be solved or brought to a happy ending. Bathrobe tricks can help make life more bearable, but they will never cure a disease.

People and things

My study of the values of everyday life does not look solely at people but also focuses on materiality. Studies, theories or narratives about everyday life are often ‘human-centred’. In these human-centred studies individual people, or representatives of groups of people, are put centre stage as the unit of analysis, even when their scores are aggregated or their claims are generalised. Stories and meanings are privileged over concrete things and practices. The different approach that I take comes from science studies, and its later-developed branch of care studies. Here, a turn to practice, and hence to the everyday, was made in the philosophy of knowledge. This (ethnographic) turn to practices focused on how scientists work in labs and with colleagues in their attempts to produce facts. This presented a shift in the theory of knowledge, because prior to this epistemology was a prescriptive, normative activity in which philosophers formulated criteria to demarcate good knowledge from error and belief.