One defining claim that critical phenomenologists make of the critical phenomenological method is that description no longer simply plays the role of detailing the world around the describing phenomenologist, but rather has the potential to transform worlds and persons. The transformative potential of the critical phenomenological enterprise is motivated by aspirations of social and political transformation. Critical phenomenology accordingly takes, as its starting point, descriptions of the oppressive historical social structures and contexts that have shaped our experience and shows how (...) these produce inequitable ways of being in the world (Guenther 2020, 12). For example, critical phenomenologists have provided rich descriptions of marginalized lived experience, particularly racialized experience (Ngo, 2017; Yancy, 2017), dis-abled experience and experiences of illness (Lajoie and Douglas, 2020; Toombs, 1993), gendered experience (Beauvoir, 2009; Salamon, 2010), and so forth. What is common across these accounts is the assumption that these descriptions provide means of enacting political change. First, they illuminate the existence of oppressive structures and their effects upon us, our possibilities, and our relations. Second, through increasing awareness they begin to denaturalize the oppressive historical structures that “privilege, naturalize, and normalize certain experiences of the world while marginalizing, pathologizing, and discrediting others” (Guenther 2020, 15). Third, through strategic responses (e.g., hesitation in Alia Al-Saji’s work), they produce new possibilities of action and experience, which initiates the process of creating different ways of being in the world (Al-Saji 2014).2. (shrink)

This is the introduction to the inaugural issue of The Journal of Philosophy of Disability.

This article explores the relationship between medicine’s history and its digital present through the lens of the physician-patient relationship. Today the rhetoric surrounding the introduction of new technologies into medicine tends to emphasize that technologies are disturbing relationships, and that the doctor-patient bond reflects a more ‘human’ era of medicine that should be preserved. Using historical studies of pre-modern and modern Western European medicine, this article shows that patient-physician relationships have always been shaped by material cultures. We discuss three activities (...) – recording, examining, and treating – in the light of their historical antecedents, and suggest that the notion of ‘human medicine’ is ever-changing: it consists of social attributions of skills to physicians that played out very differently over the course of history. (shrink)

In this paper I explore health and illness through the lens of enactivism, which is understood and developed as a bodily-based worldly-engaged phenomenology. Various health theories – biomedical, ability-based, biopsychosocial – are introduced and scrutinized from the point of view of enactivism and phenomenology. Health is ultimately argued to consist in a central world-disclosing aspect of what is called existential feelings, experienced by way of transparency and ease in carrying out important life projects. Health, in such a phenomenologically enacted understanding, (...) is an important and in many cases necessary part of leading a good life. Illness, on the other hand, by such a phenomenological view, consist in finding oneself at mercy of unhomelike existential feelings, such as bodily pains, nausea, extreme unmotivated tiredness, depression, chronic anxiety and delusion, which make it harder and, in some cases, impossible to flourish. In illness suffering the lived body hurts, resists, or, in other ways, alienates the activities of the ill person. (shrink)

Recovery is a commonly used concept in both professional and everyday contexts. Yet despite its extensive use, it has not drawn much philosophical attention. In this paper, I question the common understanding of recovery, show how the concept is inadequate, and introduce new and much needed terminology. I argue that recovery glosses over important distinctions and even misrepresents the process of moving away from malady as "going back" to a former state of health. It does not invite important nuances needed (...) to distinguish between biomedical, phenomenological, and social perspectives. In addition, I claim that there are many conditions where we are making use of the concept of recovery, although the person recovered from the condition in question, has not regained the same degree of soundness. I show how the concept of recovery leads to conceptual discrepancies that can result in worsening patients' conditions. To gain a fuller understanding, I propose to rethink the direction of the process in question. I define the process of moving away from malady as a move forward towards a new state of soundness. I also suggest three terms, corresponding to different perspectives, to describe this movement forward: 'curing', 'healing', and 'habilitating'. This new terminology provides a more nuanced understanding of the states of both malady and soundness and an attentiveness as to how they differ and relate. (shrink)

Ian James Kidd ABSTRACT: This paper presents two challenges faced by many initiatives that try to diversify undergraduate philosophy curricula, both intellectually and demographically. Trade-offs involve making difficult decisions to prioritise some values over others. Backfires involve unintended consequences contrary to the aims and values of diversity initiatives, including ….

Empathy is a topic of continuous debate in the nursing literature. Many argue that empathy is indispensable to effective nursing practice. Yet others argue that nurses should rather rely on sympathy, compassion, or consolation. However, a more troubling disagreement underlies these debates: There’s no consensus on how to define empathy. This lack of consensus is the primary obstacle to a constructive debate over the role and import of empathy in nursing practice. The solution to this problem seems obvious: Nurses need (...) to reach a consensus on the meaning and definition of empathy. But this is easier said than done. Concept analyses, for instance, reveal a profound ambiguity and heterogeneity of the concept of empathy across the nursing literature. Since the term “empathy” is used to refer to a range of perceptual, cognitive, emotional, and behavioral phenomena, the presence of a conceptual ambiguity and heterogeneity is hardly surprising. Our proposal is simple. To move forward, we need to return to the basics. We should develop the concept from the ground up. That is, we should begin by identifying and describing the most fundamental form of empathic experience. Once we identify the most fundamental form of empathy, we will be able to distinguish among the more derivative experiences and behaviors that are addressed by the same name and, ideally, determine the place of these phenomena in the field of nursing. The aim of this article is, consequently, to lay the groundwork for a more coherent concept of empathy and thereby for a more fruitful debate over the role of empathy in nursing. In Part 1, we outline the history of the concept of empathy within nursing, explain why nurses are sometimes warry of adapting concepts from other disciplines, and argue that nurses should distinguish between adapting concepts from applied disciplines and from more theoretical disciplines. In Part 2, we show that the distinction between emotional and cognitive empathy—borrowed from theoretical psychology—has been a major factor in nurses’ negative attitudes toward emotional empathy. We argue, however, that both concepts fail to capture the most fundamental form of empathy. In Part 3, we draw on and present some of the seminal studies of empathy that can be found in the work of phenomenological philosophers including Max Scheler, Edmund Husserl, and Edith Stein. In Part 4, we outline how their understanding of empathy may facilitate current debates about empathy’s role in nursing. (shrink)

Over one hundred years after Max Weber delivered his lecture “Science as a Vocation,” his description of the work of the physician in a disenchanted world still resonates. As a chronically ill patient who interacts with physicians frequently, I struggle with reconciling my understanding of my ill body with how my physician makes sense of my illness. My diagnosis created an existential crisis that caused me to search for meaning in my embodied experience, but I soon learned there is little (...) room for such a search within modern biomedicine. Instead, I turned to fine art to help me make sense of my ill body and its purpose in my life. With the aid of my printmaker sister, Darian Goldin Stahl, I have transformed the magnetic resonance images of my body into works of art, which help to re-enchant my body and give purpose to my illness. (shrink)

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

This paper considers phenomenological descriptions of health in Gadamer, Heidegger, Merleau-Ponty, and Svenaeus. In these phenomenologies of health, health is understood as a tacit, background state that permits not only normal functioning but also philosophical reflection. Nietzsche’s model of health as a state of intensity that is intimately connected to illness and suffering is then offered as a rejoinder. Nietzsche’s model includes a more complex view of suffering and pain as integrally tied to health, and its language opens up the (...) possibility of many ‘healths,’ providing important theoretical support to phenomenological accounts of the diversity and complexity of health and illness. (shrink)

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the theoretical (...) conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

A phenomenological approach to anthropology should not propose a static definition of man, but inquire into specific human motivations, which never occur isolated. Therefore, the autonomy-dependency connection is presented as a possible human motivational ground. The notion of autonomy, presented with reference to the Kantian idea of the self-determining reason and to the Husserlian account of self-constitution, reveals in itself elements of dependency. On the other side, the notion of vulnerability and reliance is displayed through different approaches of Gehlen, MacIntyre (...) and Toombs in order to illustrate dependency not as a mere capitulation of the subject, but as one of its intrinsic possibilities, which does not exclude autonomous will. (shrink)

The once animated efforts in medical phenomenology to integrate the art and science of medicine (or to humanize scientific medicine) have fallen out of philosophical fashion. Yet the current competing medical discourses of evidencebased medicine and patient-centered care suggest that this theoretical endeavor requires renewed attention. In this paper, I attempt to enliven the debate by discussing theoretical weaknesses in the way the “lived body” has operated in the medical phenomenology literature—the problem of the absent body—and highlight how evidence-based medicine (...) has refigured medical phenomenology’s historical nemesis, “biomedicine.” What we now need is a phenomenology of the embodied subject in the age of evidence-based medicine. (shrink)

In this paper I present and compare the ideas behind naturalistic theories of health on the one hand and phenomenological theories of health on the other. The basic difference between the two sets of theories is no doubt that whereas naturalistic theories claim to rest on value neutral concepts, such as normal biological function, the phenomenological suggestions for theories of health take their starting point in what is often named intentionality: meaningful stances taken by the embodied person in experiencing and (...) understanding her situation and taking action in the world.Although naturalism and phenomenology are fundamentally different in their approach to health, they are not necessarily opposed when it comes to understanding the predicament of ill persons. The starting point of medical investigations is what the patient feels and says about her illness and the phenomenological investigation should include the way diagnoses of different diseases are interpreted by the person experiencing the diseases as an embodied being. Furthermore, the two theories display similarities in their emphasis of embodiment as the central element of health theory and in their stress on the alien nature of the body displayed in illness. Theories of biology and phenomenology are, indeed, compatible and in many cases also mutually supportive in the realm of health and illness. (shrink)

Pain is far more than an aversive sensation. Chronic pain, in particular, involves the sufferer in a complex experience filled with ambiguity and paradox. The tensions thereby established, the unknowns, pressures, and oscillations, form a significant part of the painfulness of pain. This paper uses a phenomenological method to examine nine such paradoxes. For example, pain can be both immediate sensation and mediated by complex interpretations. It is a certainty for the experiencer, yet highly uncertain in character. It pulls one (...) to the present but also projects one outward to a feared or desired future. Chronic pain can seem located in the body and/or mind; interior to the self, or an alien other; confined to a particular point and/or radiating everywhere. Such fundamental paradoxes, existential and epistemological, can challenge those living with long-term pain. (shrink)

During recent decades various researchers from health and social sciences have been debating what it means for a person to be disabled. A rather overlooked approach has developed alongside this debate, primarily inspired by the philosophical tradition called phenomenology. This paper develops a phenomenological model of disability by arguing for a different methodological and conceptual framework from that used by the existing phenomenological approach. The existing approach is developed from the phenomenology of illness, but the paper illustrates how the case (...) of congenital disabilities, looking at the congenital disorder called cerebral palsy (CP), presents a fundamental problem for the approach. In order to understand such congenital cases as CP, the experience of disability is described as being gradually different from, rather than a disruption of, the experience of being abled, and it is argued that the experience of disability is complex and dynamically influenced by both intrinsic and extrinsic factors. Different experiential aspects of disability— pre-reflective, attuned and reflective aspects—are described, demonstrating that the experience of disability comes in different degrees. Overall, this paper contributes to the debates about disability by further describing the personal aspects and experience of persons living with disabilities. (shrink)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

This article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and Time , (...) shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children. (shrink)

In this paper I develop a phenomenology of falling ill by presenting, interpreting and developing the basic model we find in Jean-Paul Sartre's Being and Nothingness. The three steps identified by Sartre in this process are analysed, developed further and brought to a five- step model: pre-reflective experience of discomfort, lived, bodily discomfort, suffered illness, disease pondering, and disease state. To fall ill is to fall victim to a gradual process of alienation, and with each step this alienating process is (...) taken to a new qualitative level. Consequently, the five steps of falling ill have not only a contingent chronological order but also a kind of logical order, in that they typically presuppose each other. I adopt Sartre's focus on embodiment as the core ground of the alienation process, but point out that the alienation of the body in illness is not only the experience of a psychic object, but an experience of the independent life of one's own body. This facticity of the body is the result neither of the gaze of the other person, nor of a reflection adopting the outer perspective of the other in an indirect way, but is a result of the very otherness of one's own body, which addresses and plagues us when we fall ill. I use examples of falling ill and being a patient to show how a phenomenology of falling ill can be helpful in educating health-care personnel about the ways of the lived body. (shrink)

I have been breathless for a long time. I lagged behind others when walking uphill. I became breathless when dancing. I couldn’t play tennis. But I somehow convinced myself that this was normal. I was getting older—perhaps in one’s mid-30s fitness drops like this, I thought? Perhaps I have “small lungs,” my husband speculated. But we were both physically active, and as we were living in Australia at the time, we enjoyed bush-walking, bike riding, and the sunshine that permeates outdoor (...) life down under. So I masked my breathlessness as best I could, and never went to see a doctor, despite my clear and increasing respiratory difficulties.Two years went by. We returned to live in the United Kingdom—in hilly Bristol.. (shrink)

Research in phenomenology has benefitted from using exceptional cases from pathology and expertise. But exactly how are we to generate and apply knowledge from such cases to the phenomenological domain? As researchers of cerebral palsy and musical absorption, we together answer the how question by pointing to the resource of the qualitative interview. Using the qualitative interview is a direct response to Varela’s call for better pragmatics in the methodology of phenomenology and cognitive science and Gallagher’s suggestion for phenomenology to (...) develop its methodology and outsource its tasks. We agree with their proposals, but want to develop them further by discussing and proposing a general framework that can integrate research paradigms of the well-established disciplines of phenomenological philosophy and qualitative science. We give this the working title, a “phenomenological interview”. First we describe the what of the interview, that is the nature of the interview in which one encounters another subject and generates knowledge of a given experience together with this other subject. In the second part, we qualify why it is worthwhile making the time-consuming effort to engage in a phenomenological interview. In the third and fourth parts, we in general terms discuss how to conduct the interview and the subsequent phenomenological analysis, by discussing the pragmatics of Vermersch’s and Petitmengin’s “Explicitation Interview”. (shrink)

While there has been a vast amount of research on breast cancer in recent years, areas within this domain remain unexplored. For instance, there have been few attempts to marry an understanding of the social context in which breast cancer occurs with an understanding of subjective experiences of this condition. The purpose of this study was to explore women's experiences of embodiment after breast cancer, utilizing a phenomenological approach rooted in a feminist perspective. The focus of this article is upon (...) the changes to embodiment that are long‐term. Twelve women were interviewed on two occasions each and were asked to talk about changes to their bodies that occurred as a result of breast cancer. Three key themes were identified: (1) how it feels (e.g. sensation and breast loss); (2) managing appearances (e.g. wearing prostheses); and (3) treatments without end (e.g. menopause). The findings of this study show that women with breast cancer are a diverse group and that survivorship is a dynamic, life‐long process, which suggests that health professionals can play an important role in establishing interdisciplinary approaches to caring, beyond the conclusion of acute treatment. (shrink)

Face transplants have been performed, in a small number, since 2005. Popular concern over the morality of the face transplant has tended to focus on the role that one’s face plays in one’s sense of self or one’s personal identity. In order to address this concern, the current paper will explore the significance of face transplants in the light of a theory of the self that draws on symbolic interactionism, narrative theory, and accounts of embodiment. The paper will respond to (...) certain presuppositions concerning personal identity made by Huxtable and Woodley. A theory of the self will be articulated that draws on the work of Merleau-Ponty and G. H. Mead, in order to place embodiment and social interaction centrally to an understanding of self-identity. This will allow an account of the nature of the suffering that a face transplant seeks to remedy, and its worth as an operation, and crucially the impact that it may have on the sense of personal identity of the recipient of the transplant. The conclusion will review the treatment in the context of the prejudices that members of contemporary societies may hold against those with disfigurements. (shrink)

The issue of how to incorporate the individual's first‐hand experience of illness into broader medical understanding is a major question in medical theory and practice. In a philosophical context, phenomenology, with its emphasis on the subject's perception of phenomena as the basis for knowledge and its questioning of naturalism, seems an obvious candidate for addressing these issues. This is a review of current phenomenological approaches to medicine, looking at what has motivated this philosophical approach, the main problems it faces and (...) suggesting how it might become a useful philosophical tool within medicine, with its own individual, but interrelated, contribution to make to current medical debates. After the general background, there is a brief summary of phenomenological ideas and their current usage in a medical context. Next is a critique of four key claims within current phenomenological medical works, concerning both the role phenomenology plays and the supposedly clear divide between phenomenology and other approaches. There are significant problems within these claims, largely because they overlook the complexity of the questions they consider. Finally, there is some more in‐depth examination of phenomenology itself and the true complexity of phenomenological debate concerning subjectivity. The aim is to show that it will be both more productive and truer to phenomenology itself, if we use phenomenology as a philosophical method for explicating and gaining deeper understanding of complex and fundamental problems, which are central to medicine, rather than as providing simple, but flawed solutions. (shrink)

The predominant model of the body in modern western medicine is the machine. Practitioners of the biomechanical model reduce the patient to separate, individual body parts in order to diagnose and treat disease. Utilization of this model has led, in part, to a quality of care crisis in medicine, in which patients perceive physicians as not sufficiently compassionate or empathic towards their suffering. Alternative models of the body, such as the phenomenological model, have been proposed to address this crisis. According (...) to the phenomenological model, the patient is viewed as an embodied person within a lived context and through this view the physician comes to understand the disruption illness causes in the patient’s everyday world of meaning. In this paper, I explore the impact these two models of the patient’s body have had on modern medical practice. To that end I first examine briefly the historical origins of the biomechanical and phenomenological models, providing a historical context for the discussion of each model’s main features in terms of machine-world and life-world. Next, I discuss the impact each model has had on the patient–physician relationship, and then I examine briefly the future development of each model. The meaning of illness vis-à-vis each model of the patient’s body is finally examined, especially in terms of how these two models affect the patient’s interpretation of illness. The paper concludes with a discussion of the biomechanical and phenomenological models, in terms of the quality of care crisis in modern western medicine. (shrink)

Recently adopted health care practices and policies describe themselves as “patient-centered care.” The meaning of the term, however, remains contested and obscure. This paper offers a typology of “patient-centered care” models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that four models of patient-centered care emphasize: patients versus (...) their parts; patients versus providers; patients/providers/states versus “the system”; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care. (shrink)

Because it focuses primarily on the sick body (disease), medicine ignores many of the concerns and needs of sick people. By listening to the stories of patients in the clinic, on the Internet, and in published book form, health care providers could gain a better understanding of the impact of disease on the person (illness), what it means to patients over and above their physical symptoms and what they might require over and above surgery or chemotherapy. Only by familiarizing themselves (...) with the entire emotional landscape of illness, which includes fear, anger, shame, guilt, and above all loneliness, can the healthy—medicine as well as society in general—hope to heal in a comprehensive manner. (shrink)

This paper considers how the experience of illness fits within Sartre’s account of embodiment in Being and Nothingness. Sartre makes some remarks about illness, but does not develop a full account. I show that the anti‐naturalistic ontological framework in which Sartre’s discussion of the body is placed, which opposes my ‘being‐for‐Others’ to my ‘being‐for‐myself’, imposes a revisionary account of illness, and how Sartre’s model of interpersonal relations affects his view of doctors, and their role in the illness experience. I note (...) and discuss the connection Sartre draws between illness and bad faith. I also point out that recent phenomenologically inspired criticisms of the medical establishment that draw on Sartre’s account of the body are limited by their failure to engage with Sartre’s ontology. (shrink)

The varieties of meaning in which we use the terms illness and health requires that we develope a conceptualization allowing us to maintain a unity between the differences. In fact, the experiences of health and illness are complex ones and they need to be understood in their different levels so that the need for help of patients and their desire for health is adequately faced. At its roots, the experience of illness is that of a threat posed to the unreflective (...) credit given to life in good health. This threat has not only a biopsychosocial dimension, but a moral and sybolic one as well, and it is mainly at this level that illness represents a moral challenge. Contemporary culture seems to be at pains in suggesting a shared set of meanings enabling the patient to give an intersubjectively valid sense of illness, since the only kind of answer offered is a technical one. The symbolic dimension of the notions of health and illness call for a deeper cultural enterprise of looking for a credible sense of illness for our times. (shrink)

This paper describes the lifeworld of one individual, Ann, in an attempt to elucidate the existential impact of early stage multiple sclerosis. Drawing on Ann's own reflections captured in a relatively unstructured interview, I construct a narrative around her first year of living with the diagnosis. Then, existential-phenomenological analysis reveals how Ann's life - lived in and through a particular body and lifeworld context - is disrupted. The unity between her body and self can no longer be taken for granted. (...) The existential possibilities inherent in her lived body are diminished and have to be renegotiated. Her sense of identity, project, relations with others and present/future plans are threatened. Ann's illness is encountered in the context of her life activities and relationships. This is the intertwining of body, self and world. To live with multiple sclerosis is to experience a global sense of disorder - a disorder which incorporates a changed relation with one's body, a transformation in the surrounding world, a threat to the self, and a change in one's relation to others. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting (...) with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (shrink)

We all know that we have and are our bodies. But might it be possible to leave this common place? In the present article we try to do this by attending to the way we do our bodies. The site where we look for such action is that of handling the hypoglycaemias that sometimes happen to people with diabetes. In this site it appears that the body, active in measuring, feeling and countering hypoglycaemias is not a bounded whole: its boundaries (...) leak. Bits and pieces of the outside get incorporated within the active body; while the centre of some bodily activities is beyond the skin. The body thus enacted is not self-evidently coherent either. There are tensions between the body’s organs; between the control under which we put our bodies and the erratic character of their behaviour; and between the various needs and desires single bodies somehow try to combine. Thus to say that a body is a whole, or so we conclude, skips over a lot of work. One does not hang together as a matter of course: keeping oneself together is something the embodied person needs to do. The person who fails to do so dies. (shrink)

This article explores the relation among illness, home, and belonging. Through a feminist phenomenological framework, I describe the disorientations of being diagnosed with borderline personality disorder and living with mental illness. This research anticipates the consequences of illness and serious disorientations for a conception of belonging as seamless body–world compatibility. Instead, this article examines how the stability of bodily dwellings in experiences of disorientation can suggest ways of being in the world that are more attentive to interdependency, unpredictability, and change (...) in human experience. I argue that these types of dwellings function as a more capacious and apposite metaphor to account for variations in belonging. This discussion outlines the ethical importance of building worlds that make room for different ways of being at home in and through our interactions with others. Although my discussion does not supply norms for ethical action, I contend that a feminist phenomenology of illness generates saliences and illuminates sensibilities that can transform our ways of being with others. (shrink)

Starting from a phenomenological understanding of the body, this article discusses the understanding of body awareness in health and illness. I question the common way to understand our relationship to our bodies in terms of subjective and objective perspectives on it, and furthermore, how this opposition has been used in the phenomenological literature to outline an understanding of health and illness as states where the body stays unnoticed versus resurfaces to our attention as dysfunctional. Using examples from an ongoing interview (...) study, I argue for an understanding of the dialectical interplay between body and world in our awareness, and how it can be understood as an approaching or distancing movement to body and world. I furthermore describe how the interplay between body and world effects and is effected by our existence in health and illness. Finally, I suggest what implications this new way of understanding the lived body has for health care practice in general, and for the development of a person‐centred care in particular. I suggest that we leave the dichotomous understanding of subjective and objective perspectives behind, and start to investigate how we move between different kinds of body awareness in health and illness. Illness, as a situation where that which has been taken for granted becomes questioned, can be said to be characterized by mistrust, and by a distancing from world and body. It is thus of importance for caregivers to provide the time, space and trusting atmosphere needed in order to make the approaching movement possible. (shrink)

There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life‐world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care (...) feel humanly focused. An action research group process in 2014–2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third‐year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care. (shrink)

This paper comprises a feminist phenomenological exploration of women’s experiences with breast augmentation and breast reduction. Situating the results of semi-structured interviews in the context of body schema, this study discloses how women perceive, think, feel and respond to bodily change created by elective breast surgery. Women’s narratives express that breast augmentation and reduction shifted their conception of the lived body and its possibilities by provoking bodily reorientations and adjustments as well as changes in bodily sensations. In contrast with body (...) image studies that emphasize elective breast surgery as transforming attitudes towards the body, this phenomenological investigation reveals that elective breast surgery also galvanizes a relearning of the world and a rearticulation of embodied doing. (shrink)

Diagnoses in medicine are often taken to serve as explanations of patients’ symptoms and signs. This article examines how they do so. I begin by arguing that although some instances of diagnostic explanation can be formulated as covering law arguments, they are explanatory neither in virtue of their argumentative structures nor in virtue of general regularities between diagnoses and clinical presentations. I then consider the theory that medical diagnoses explain symptoms and signs by identifying their actual causes in particular cases. (...) While I take this to be largely correct, I argue that for a diagnosis to function as a satisfactory causal explanation of a patient’s symptoms and signs, it also needs to be supplemented by understanding the mechanisms by which the identified cause produces the symptoms and signs. This mechanistic understanding comes not from the diagnosis itself, but rather from the theoretical framework within which the physician operates. (shrink)

We investigated family members’ lived experience of Parkinson’s disease aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship (...) within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey. (shrink)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

This article examines the philosophical role of illness. It briefly surveys the philosophical role accorded to illness in the history of philosophy and explains why illness merits such a role. It suggests that illness modifies, and thus sheds light on, normal experience, revealing its ordinary and therefore overlooked structure. Illness also provides an opportunity for reflection by performing a kind of suspension (epoché) of previously held beliefs, including tacit beliefs. The article argues that these characteristics warrant a philosophical role for (...) illness. While the performance of most philosophical procedures is volitional and theoretical, however, illness is uninvited and threatening, throwing the ill person into anxiety and uncertainty. As such it can be viewed as a radical philosophical motivation that can profoundly alter our outlook. The article suggests that illness can change the ways in which we philosophise: it may shape philosophical methods and concerns and change one's sense of salience and conception of philosophy. (shrink)

In this paper, I discuss the role of care and competence, as well as their relationship to one another, in contemporary medical practice. I distinguish between two types of care. The first type, care1, represents a natural concern that motivates physicians to help or to act on the behalf of patients, i.e. to care about them. However, this care cannot guarantee the correct technical or right ethical action of physicians to meet the bodily and existential needs of patients, i.e. to (...) take care of them—care2. To that end, physicians must be competent in the practice of medicine both as evidence—based science (technical competence) and as patient—centered art (ethical competence). Only then, I argue, can physicians take care of (care2) patients’ bodily and existential needs in a compassionate and comprehensive manner. Importantly, although care1 precedes competence, competence—both technical and ethical—is required for genuine care2, which in turn reinforces an authentic care1. I utilize the play Wit, especially the character Jason Posner, and Francis Peabody’s exposition on caring for patients, to illustrate the role of care and competence in contemporary medical practice. (shrink)

In this paper, an attempt is made to develop an understanding of the essence of illness based on a reading of Martin Heidegger’s pivotal work Being and Time. The hypothesis put forward is that a phenomenology of illness can be carried out through highlighting the concept of otherness in relation to meaningfulness. Otherness is to be understood here as a foreignness that permeates the ill life when the lived body takes on alien qualities. A further specification of this kind of (...) otherness can be found with the concept of unhomelike being-in-the-world. Health, in contrast to this frustrating unhomelikeness, is a homelike being-in-the-world in which the lived body in most cases has a transparent quality as the point of access to the world in understanding activities. The paper then proposes that the temporal structure of illness can be conceptualised as an alienation of past and future, whereby one’s past and future appear alien, compared with what was the case before the onset of illness. The remainder of the paper follows two paths as regards the temporality of illness. The first path explores the temporality of the body in relation to the temporality of the being-in-the-world of the self. One way of understanding the alienating character of illness is that nature, as the temporality of our bodies, ceases to obey our attempts to make sense of phenomena: the time of the body no longer fits into the time of the self. The second path explored in the paper is that of narrativity. When we make sense of the present, in relation to our future and past, we do so in a special manner, namely, by structuring our experiences in the form of stories. Illness breaks in on us as a rift in these stories, necessitating a retelling of the past and a re-envisioning of the future in an effort to address and change their alienated character. These stories, however, never allow us to leave the silent otherness of our bodies behind. They are stories nurtured by the time of nature at the heart of our existence. It is then claimed that the idea of life’s being a story must be understood in a metaphorical sense, and an exploration of how phenomenology addresses the metaphoric quality of its conceptuality is ushered in. It is pointed out that metaphors can be systematically related to each other and that they always have a founding ground in the orientation and basic activities of the lived body. Therefore, if the concepts used in working out a phenomenological theory of health and illness are, to a certain extent, metaphorical, one could, nevertheless, claim that the metaphoric qualities of the phenomenological concepts are primary in referring back to the lived body and the way it inhabits the world. (shrink)

The aim of this article is to explore nuances within the field of bodily self-awareness. My starting-point is phenomenological. I focus on how the subject experiences her or his body, i.e. how the body stands forth to the subject. I build on the phenomenologist Drew Leder’s distinction between bodily dis-appearance and dys-appearance. In bodily dis-appearance, I am only prereflectively aware of my body. My body is not a thematic object of my experience. Bodily dys-appearance takes place when the body appears (...) to me as “ill” or “bad.” This is often the case when I experience pain or illness. Here, I will examine three versions of bodily dys-appearance. Whereas many phenomenological studies have explored cases of bodily dys-appearance, few studies have focused on the opposite of bodily dys-appearance, i.e. on bodily modes of being where the body appears to the subject as something good, easy or well. This is done in this article. When the body stands forth as good, easy or well to the subject, I suggest that the body eu-appears to this person. The analysis of eu-appearance shows that the subject can attend to her or his body as something positive and that this attention need not result in discomfort or alienation. Eu-appearance can take place in physical exercise, in sexual pleasure and in some cases of wanted pregnancies. I also discuss, briefly, the case of masochism. (shrink)

A number of commentators claim their disability to be a part of their identity. This claim can be labelled ‘the identity claim’. It is the claim that disabling characteristics of persons can be identity-constituting. According to a central constraint on traditional discussions of personal identity over time, only essential properties can count as identity-constituting properties. By this constraint, contingent properties of persons (those they might not have instanced) cannot be identity-constituting. Viewed through the lens of traditional approaches to the problem (...) of personal identity over time, disablement is most likely to be regarded as a contingent property of a person and not an essential one. Hence, on traditional approaches, the identity claim must be false. An alternative account of identity is sketched here. It is one which exploits the idea of narrative identity, and points to five basic features of personal existence. When accounts of identity are structured in relation to these five features, it is argued, disablement can be shown to be identity-constituting, and hence the identity claim can be accepted. (shrink)