Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from (...) or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Despite the growing interest and supporting evidence for person-centered care, there is still a fundamental disagreement about what makes healthcare person-centered. In this article, we define PCC as operating with three fundamental conditions: personal, participatory and holistic. To further understand these concepts, we develop a framework based on the theory of affordances, which we apply to the healthcare case of rehabilitation and a concrete experiment on social interactions between persons with cerebral palsy and physio- and occupational therapists. Based on the (...) application of the theory, we argue that in order for healthcare to be considered as PCC, professionals need to adopt a personalistic attitude in their care, defined in terms of mutual affordances: how the professional and the person of care acknowledges each other as a person in an interaction. In opposition, we define the functionalistic attitude in terms of object affordances, those related to a concrete goal. We show that PCC requires a balance of personalistic and functionalistic attitudes, since this contributes to a participatory and holistic conception of, and interaction with, the person of care. (shrink)

The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on what social inclusion (...) for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness. (shrink)

Through the vehicle of Nicolas Sarkozy’s so-called “Dakar Address” we will analyse the West’s persisting lack of insight into the need for a Western decolonization. We will try to identify the dangers that come from this refusal, such as the abidance in colonial patterns, the enduring self-understanding as superior com-pared to Africa, and the persisting unwillingness to accept the colonial guilt. Decolonization has to be understood as a two-fold business. Decolonization is over-coming endured and perpetrated violence. It is not only (...) important that the colonial oppressed regain strength, it is equally important that the perpetrator of colonial violence understand their excess of violence and work on effecting its return impossible. We explain how Western thinking remains dangerous and untrustwor-thy if it refuses its own decolonization. Finally, we will draw attention to a fundamental pattern of Western thought that clashes with the fundamental values of the West: contempt. In a final step we suggest how this contempt can be overcome through desuperiorisation and the establishment of elative ethics. (shrink)

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem that sensor technology reveals things about the elderly patients without the patients being aware of this. I suggest improvement of these relations may be considered in aesthetic (...) terms, for instance by developing the affective quality of people’s technological relationships. (shrink)

Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the ‘cognitive load’ required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability (...) and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction. (shrink)

This is an article about bodily pleasures, words and some of the relations between them. It is a turn in a conversation between the author (‘me’) and Marilyn Strathern (‘Strathern’). It talks theory, but not in general. Instead, this theory gets situated in traditions; specified; in relation to concerns; and exemplified with stories to do with the term lekker. This article is in English, but lekker is not an English term. It is Dutch. The stories come from long-term field work (...) in various sites and situations close to home for the author, who is also Dutch. They were driven by a concern with fostering bodily pleasures in contexts such as nursing homes and dieting practices where nutrients and calories are granted more importance. The difficulties of translating lekker (tasty? pleasant? delicious? fun? nice?) are used as a set of intellectual resources. In contrast to Strathern, the author insists on the fleshy particularities of the practices where lekker is spoken. Along with Strathern, the author seeks to escape nature/culture divides. Inspired by Strathern, the author follows lekker around merographically – that is, along iterative trails and between sites and situations that are connected, but only partially so. In homage to Strathern, finally, the author plays with the question of who the collective subject of anthropological theory – we – might be, and who belongs to the others that form its object – they. (shrink)

This paper is the English translation and adaptation of my inaugural lecture in Amsterdam for the Chair Anthropology of Everyday Ethics in Health Care. I argue that the challenges in health care may look daunting and unsolvable in their scale and complexity, but that it helps to consider these problems in their specificity, while accepting that some problems may not be solved but have become chronic. The paper provides reflections on how to develop a scientific approach that does not aim (...) to eradicate bad things but explores ways in which to live with them. Crucial in this quest is the attention to how we conceptualize problems, and whether this is specific enough for addressing present day concerns. I propose an anthropology of everyday ethics as a way to study people’s everyday ways of handling a variety of goods in practice. I draw specific attention to exploring aesthetic values in everyday life amongst these, values that are used abundantly to qualify events in everyday life but rarely theorized in philosophy or social science. (shrink)

Clowns seem suspect when it comes to respect. The combination of clowning and people with dementia may seem especially suspicious. In this argument, I take potential concerns about clowning in dementia care as an opportunity to explore the meaning of a respectful approach of people with dementia. Our word ‘respect’ is derived from the Latin respiciō, meaning ‘looking back’ or ‘seeing again’, as well as ‘looking after’ or ‘having regard’ for someone or something. I build upon this double meaning of (...) respiciō by examining how simultaneously we look to and after people with dementia. I do so empirically by studying how miMakkus clowns in their practice learn to look with new eyes to people and things around them. I call this clown’s view and differentiate it from the predominant way of observing people in dementia care. I argue that respiciō comes in two guises, each of which merges specific forms of looking to and looking after the other. By making conventional, solidified ways of seeing the other fluid again, clowns remind us of the value that comes with a veiled way of paying respect to people with dementia. (shrink)

Remote monitoring of implantable cardioverter defibrillator (ICD) patients links patients wirelessly to the clinic via a box in their bedroom. The box transmits data from the ICD to a remote database accessible to clinicians without patient involvement. Data travel across time and space; clinicians can monitor patients from a distance and instantly know about cardiac events. Based on ethnographic fieldwork in two Danish hospitals, this article explores the configuration of the wireless ICD patient by following a number of patients through (...) hospitalisation, implantation, in-clinic follow-up, and remote monitoring. Wireless therapy, we argue, scripts the patient as data. In high-tech clinical encounters, data are enacted as extensions and copies of the patient, and even proxies that, in patients’ experiences, may turn into identity thieves. In illuminating the multiple positions that data take in such clinical encounters and in patients’ experiences we discuss the ambiguities that arise when patients go wireless. (shrink)

Public debate about who or what is to blame for the rising rates of obesity and overweight shifts between two extreme opinions. The first posits overweight as the result of a lack of individual will, the second as the outcome of bodily drives, potentially triggered by the environment. Even though apparently clashing, these positions are in fact two faces of the same liberal coin. When combined, drives figure as a complication on the road to health, while a strong will should (...) be able to counter obesity. Either way, the body’s propensity to eat is to be put under control. Drawing on fieldwork in several obesity clinics and prevention sites in the Netherlands, this paper first traces how this ‘logic of control’ presents itself in clinical practices targeted at overweight people, and then goes on to explore how these practices move beyond that logic. Using the concepts of ‘will’ and ‘drives’ as analytical tools, I sketch several modes of ordering reality in which bodies, subjects, food and the environment are configured in different ways. In this way it appears that in clinical practices the terms found in public discourse take on different meanings and may even lose all relevance. The analysis reveals a richness of practiced ideals. The paper argues, finally, that making visible these alternative modes of ordering opens up a space for normative engagements with obesity care that move beyond the logic of control and its critiques. (shrink)