_Phenomenological insights into health issues relating to bodily self-experience, normality and deviance, self-alienation, and objectification._.

I argue that we find the articulation of a problem concerning bodily agency in the early works of the Merleau-Ponty which he explicates as analogous to what he explicitly calls the problem of perception. The problem of perception is the problem of seeing how we can have the object given in person through it perspectival appearances. The problem concerning bodily agency is the problem of seeing how our bodily movements can be the direct manifestation of a person’s intentions in the (...) world. In both cases what, according to Merleau-Ponty, obscures a recognition of the phenomenon in question is a conception of our bodily capacities, i.e. our sensibility and our motility, which reduces these to the workings of mechanisms that are blind to meaning. I argue that both the problem concerning perception and the problem concerning bodily agency can be properly called transcendental. The problem of perception is transcendental because it concerns the very intelligibility of appearances and judgements with empirical content. The problem of bodily agency is transcendental in the sense that it concerns the very intelligibility of our bodily capacity to carry out intentions and by implication the intelligibility of our intentions as such. (shrink)

This collection features comprehensive overviews of the various ethical challenges in organ transplantation. International readings well-grounded in the latest developments in the life sciences are organized into systematic sections and engage with one another, offering complementary views. All core issues in the global ethical debate are covered: donating and procuring organs, allocating and receiving organs, as well as considering alternatives. Due to its systematic structure, the volume provides an excellent orientation for researchers, students, and practitioners alike to enable a deeper (...) understanding of some of the most controversial issues in modern medicine. (shrink)

In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories (...) of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals’ engagement with everyday projects when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face’s absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment. (shrink)

The Stoics considered that in order to die well, one must previously have lived and not merely existed, an assertion which will not be contested in this paper. The question raised here is whether an individual whose life expectancy is jeopardized by serious illness or whose life has not been lived to the ‘full’ for whatever reason should have to abandon all hope or, alternately, whether that life could still somehow be saved. One clear obstacle to achieving this stems from (...) moral character, given that moral character is an element which conditions an individual’s moral behaviour, as pointed out by Beauchamp and Childress and particularly Pellegrino and Thomasma. The transformation of moral character requires time and effort but the testimonies of patients who have given their lives a radical new direction upon being diagnosed with a serious illness seem to show the existence of a peculiar phenomenon of moral catharsis. In this paper we attempt to illustrate that this alleged phenomenon is not the result of a kind of cataleptic impression but rather the result of a dialectic and narrative process, during which a first hope of healing is dashed, unveiling a new sense in the illness. Its fulfillment provides the patient with a final hope. (shrink)

What is it like to be a bat? What is it like to be sick? These two questions are much closer to one another than has hitherto been acknowledged. Indeed, both raise a number of related, albeit very complex, philosophical problems. In recent years, the phenomenology of health and disease has become a major topic in bioethics and the philosophy of medicine, owing much to the work of Havi Carel (2007, 2011, 2018). Surprisingly little attention, however, has been given to (...) the phenomenology of animal health and suffering. This omission shall be remedied here, laying the groundwork for the phenomenological evaluation of animal health and suffering. (shrink)

Cartesian dualism has been viewed by medical theorists to be oneof the chief causes of a reductionist/mechanistic treatment ofthe patient. Although I aver that Cartesian dualism is one culprit for the misapprehension of the genuine treatment of patients in termsof both mind and body, I argue that interactive dualism whichstresses the interaction of mind and body is essential to treatpatients with dignity and compassion. Thus, adequate medical carethat is humanistic in nature is difficult (if not impossible)to achieve without physicians adhering (...) to a dualistic frameworkin which the body and person is treated during illness. (shrink)

In this paper I explore the various meanings of embodiment from a patient’s perspective. Resorting to phenomenology of health and medicine, I take the idea of ‘lived experience’ as starting point. On the basis of an analysis of phenomenology’s call for bracketing the natural attitude and its reduction to the transcendental, I will explain, however, that in medical phenomenological literature ‘lived experience’ is commonly one-sidedly interpreted. In my paper, I clarify in what way the idea of ‘lived experience’ should be (...) revisited and, subsequently, what this reconsideration means for phenomenological research on embodiment in health and medicine. The insight that the body is a condition of possibility for world-disclosing yet, at the same time, itself conditioned by this world forces us to not only zoom in on the body’s subject-side, but also on its object-side. I argue that in order to render account for this double body ontology, phenomenology should include empirical sociological analyses as well. I thus argue in favor of the idea of a socio-phenomenology. Drawing on material from my own research project on embodied self-experiences after breast surgery, I show how this approach can be fruitful in interpreting the impact of disfigurements on a person’s embodied agency, or a person’s ‘I can’. (shrink)

Several philosophers have recently argued that phenomenology is well-suited to help understand the concepts of health, disease, and illness. The general claim is that by better analysing how illness appears to or is experienced by ill individuals—incorporating the first-person perspective—some limitations of what is seen as the currently dominant third-person or ‘naturalistic’ approaches to understand health and disease can be overcome. In this article, after discussing some of the main insights and benefits of the phenomenological approach, I develop three general (...) critiques of it. First, I show that what is often referred to as naturalism tends to be misunderstood and/or misrepresented, resulting in straw-man arguments. Second, the concept of normality is often problematically employed such that some aspects of naturalism are actually presupposed by many phenomenologists of medicine. Third, several of the key phenomenological insights and concepts, e.g. having vs. being a body, the alienation of illness, the epistemic role of the first-person perspective, and the idea of health within illness, each bring with them new problems that limit their utility. While acknowledging the possible contributions of phenomenology, these criticisms point to some severe limitations of bringing phenomenological insights to bear on the problems facing philosophy of medicine that should be addressed if phenomenology is to add anything substantially new to its debates. (shrink)

In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this (...) personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective. (shrink)

Invested with the capacity to reinstate physiological order, medicines are at the centre of contemporary health care. Their purpose and efficacy are generally seen as predictable and concrete: disease = therapy = outcome. These culturally specific understandings shape the practices and meanings of taking medicines. This article, however, queries what actually takes place when human bodies and medical drugs converge. Is it a solely therapeutic affair, a restoration of bodily normality, or one of multiple transformations? The ambivalent meaning of the (...) original Greek word for drug, pharmakon, intimates the potential of medicines to act as ‘remedy’ as well as ‘poison’. Using pharmakon as a conceptual tool, the article explores the complex, and often paradoxical corporeal effects of HIV combination therapy, with particular focus on lipodystrophy, a peculiar change in people‘s body shape. This unintended and frequently distressing iatro-genic phenomenon challenges common notions of therapeutic efficacy and causality and foregrounds the productive dimension of medical drugs - their capacity to reconfigure bodies, diseases and identities in multiple, unpredictable ways. (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)

Today the phenomenological concept of the lived body figures centrally in several philosophical and special scientific debates. In these wide and widening fields, the concept is used with multiple different meanings. In order to clarify and delineate the debates, this paper provides an explication of the phenomenological-transcendental methods. It argues that these methods help us remove the most fundamental ambiguities of the concept of embodiment by distinguishing between the main constituents of the lived body and by illuminating their mutual relations.

During the last few decades, many thinkers have advocated for the importance of the phenomenological approach in developing the understanding of the lived experience of illness. In their attempts, they have referred to ideas found in the history of phenomenology, most notably, in the works of Edmund Husserl, Martin Heidegger, Maurice Merleau-Ponty and Jean-Paul Sartre. The aim of this paper is to sketch out an interpretation of illness based on a yet unexplored conceptual framework of the phenomenology of French thinker (...) Jean-Luc Marion. Focusing on concepts of the saturated phenomenon and flesh, the paper develops an interpretation of illness as the saturated phenomenon, which highlights a variety of dimensions of illness already elaborated within the phenomenology of medicine, such as the affective dimension of illness, the disruptive dimension of illness, the transformed perception of the self in illness, mineness of flesh in illness and the inexpressible and hermeneutical dimension of illness. In addition to that, the paper explores some of the consequences the proposed interpretation of illness offers regarding the nature of illness and health. It is argued that illness in its essence is very similar to the experience of other saturated phenomena, suggesting that the difference between them does not lie within the character of the affective givenness, but rather within the dynamic relationship between the affective givenness and its conceptualization. It is also shown that the experience of health is compatible with the experience of saturation and thus is not limited to the tacit and harmonious background state. (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 some quarters within philosophy of medicine, more particularly in the phenomenological approaches, naturalism is looked upon with suspicion. This paper argues, first, that it is necessary to distinguish between two expressions of this attitude towards naturalism: phenomenological approaches to illness disagree with naturalism regarding various theoretical claims and they disapprove of naturalism on an ethical level. Second, this paper argues that both the disagreement with and the disapproval of naturalism are to a large extent confused. It then offers some (...) proposals to set up an agenda for future collaboration. (shrink)

According to recent approaches in the philosophy of medicine, biomedicine should be replaced or complemented by a humanistic medical model. Two humanistic approaches, narrative medicine and the phenomenology of medicine, have grown particularly popular in recent decades. This paper first suggests that these humanistic criticisms of biomedicine are insufficient. A central problem is that both approaches seem to offer a straw man definition of biomedicine. It then argues that the subsequent definition of humanism found in these approaches is problematically reduced (...) to a compassionate or psychological understanding. My main claims are that humanism cannot be sought in the patient–physician relationship alone and that a broad definition of medicine should help to revisit humanism. With this end in view, I defend what I call an outcomes-oriented approach to humanistic medicine, where humanism is set upon the capacity for a health system to produce good health outcomes. (shrink)

Cuerpo físico y cuerpo vivido no deben interpretarse como dos realidades separadas, sino que representan dos aspectos distintos de la misma experiencia corporal descrita en términos fenomenológicos. La experiencia de la corporalidad puede seguir dos direcciones: a) la primera es una dirección ascendente, que implica el desarrollo de las posibilidades de movimiento, acción y expresión del cuerpo en toda su plenitud; b) el otro camino o dirección, en contraste con el anterior, toma una senda descendente, y se halla estrechamente relacionado (...) con la experiencia del dolor, de la limitación, de la resistencia corporal que es experimentada como oposición a la propia voluntad: es el cuerpo vulnerable. Aquí reaparece un nuevo dualismo: el cuerpo poético de la expresión frente al cuerpo vulnerable de la enfermedad y el dolor. Mi contribución trata de cuestionar la idea de que el cuerpo poético de la expresión artística y el cuerpo vulnerable de la vejez, de la discapacidad o de la enfermedad, pertenezcan a esferas completamente separadas. Con este propósito, se intenta poner de relieve los múltiples puntos de intersección entre ambas perspectivas, al tiempo que se sostiene que tales intersecciones pueden llegar a ser interesantes puntos de partida de la investigación interdisciplinar. (shrink)

The aim of this study was to gain a deeper understanding of the experience of time when living with severe incurable disease. A phenomenological and philosophical approach of description and deciphering were used. In our modern health care system there is an on-going focus on utilizing and recording the use of time, but less focus on the patient’s experience of time, which highlights the need to explore the patients’ experiences, particularly when life is vulnerable and time is limited. The empirical (...) data consisted of 26 open-ended interviews with 23 participants receiving palliative care at home, in hospital or in a nursing home in Norway. The theoretical frameworks used are mainly based upon K. Martinsens philosophy of care, K. E. Løgstrup phenomenological philosophy, in addition to C. Saunders’ hospice philosophy, L. Feigenberg’s thanatology and U. Qvarnström’s research exploring patient’s reactions to impending death. Experience of time is described as being a movement that moves the individual towards death in the field of opposites, and deciphered to be a universal, but a typical and unique experience emerging through three integrated levels: Sense of time; where time is described as a movement that is proceeding at varying speeds. Relate totime; where the awareness of limited life changes the understanding of time to be more existential. Being in time; where limited time seems to clarify the basic living conditions and phenomena of life. The existence of life when the prospect of death is present is characterized by emotional swings that move within polarizing dimensions which is reflected in the experience of time illustrated as the moves of the pendulum in a grandfather clock. The diversity of the experience of time is oscillating between going fast or slow, being busy or calm, being unpredictable but predictable, safe or unsafe and between being good or bad, depending on the embodied situation of the individual. (shrink)

The number of people who survive critical illness is increasing. In parallel, a growing body of literature reveals a broad range of side-effects following intensive care treatment. Today, more attention is needed to improve the quality of survival. Based on nine individual stories of illness experiences given by participants in two focus groups and one individual interview, this paper elaborates how former critically ill patients craft and recraft their personal stories throughout their illness trajectory. The analysis was conducted from a (...) phenomenological perspective and led to the meaning structure; a quest to find oneself after critical illness. In this structure, illness represented a breakdown of the participants’ lives, forcing them to develop a new understanding of themselves. Despite acute illness, they felt safe in hospital. Coming home, however, meant a constant balancing between health and illness, and being either in or out of control. To gain a deeper understanding of the participants’ narratives of survival, the meaning structure was developed from a phenomenological life world perspective, Heidegger’s concept of homelikeness and Arthur Frank’s typologies of illness narratives. In conclusion listening to and acknowledging the patients’ lived experiences of critical illness may support the patient efforts to establish the newly defined self and hence be vital for recovery. Phenomenology is one approach facilitating care tailored to the patients’ lived experience of critical illness and its aftermaths. (shrink)

Naturalistic theories of disease appeal to concepts of biological function, and use the notion of dysfunction as the basis of their definitions. Debates in the philosophy of biology demonstrate how attributing functions in organisms and establishing the function-dysfunction distinction is by no means straightforward. This problematization of functional ascription has undermined naturalistic theories and led some authors to abandon the concept of dysfunction, favoring instead definitions based in normative criteria or phenomenological approaches. Although this work has enhanced our understanding of (...) disease and illness, we need not necessarily abandon naturalistic concepts of function and dysfunction in the disease debate. This article attempts to move towards a new naturalistic theory of disease that overcomes the limitations of previous definitions and offers advantages in the clinical setting. Our approach involves a re-evaluation of concepts of biological function employed by naturalistic theories. Drawing on recent insights from the philosophy of biology, we develop a contextual and evaluative account of function that is better suited to clinical medicine and remains consistent with contemporary naturalism. We also show how an updated naturalistic view shares important affinities with normativist and phenomenological positions, suggesting a possibility for consilience in the disease debate. (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)

Phenomenology is a useful methodology for describing and ordering experience. As such, phenomenology can be specifically applied to the first person experience of illness in order to illuminate this experience and enable health care providers to enhance their understanding of it. However, this approach has been underutilized in the philosophy of medicine as well as in medical training and practice. This paper demonstrates the usefulness of phenomenology to clinical medicine. In order to describe the experience of illness, we need a (...) phenomenological approach that gives the body a central role and acknowledges the primacy of perception. I present such a phenomenological method and show how it could usefully illuminate the experience of illness through a set of concepts taken from Merleau-Ponty. His distinction between the biological body and the body as lived, analysis of the habitual body, and the notions of motor intentionality and intentional arc are used to capture the experience of illness. I then discuss the applications this approach could have in medicine. These include narrowing the gap between objective assessments of well-being in illness and subjective experiences which are varied and diverse; developing a more attuned dialogue between physicians and patients based on a thick understanding of illness; developing research methods that are informed by phenomenology and thus go beyond existing qualitative methods; and providing medical staff with a concrete understanding of the impact of illness on the life-world of patients. (shrink)

In this paper I respond to Edward Harcourt’s suggestion that human excellences are structured in a way that allows us to see the multiplicity of life forms that can be instantiated by different groups of excellences. I accept this layered model, but suggest that Harcourt’s proposal is not pluralistic enough, and offer three critical points. First, true pluralism would need to take a life-cycle view, thus taking into account plurality within, as well as between, lives. Second, Harcourt’s pluralism still posits (...) physical health as a requirement for excellence, whereas I claim that the challenges of illness give more, not less, opportunity for excellence. Third, I make a more general claim that in certain salient cases it is precisely the absence of excellence that can facilitate virtue. (shrink)

In this article, I propose that illness is philosophically revealing and can be used to explore human experience. I suggest that illness is a limit case of embodied experience. By pushing embodied experience to its limit, illness sheds light on normal experience, revealing its ordinary and thus overlooked structure. Illness produces a distancing effect, which allows us to observe normal human behavior and cognition via their pathological counterpart. I suggest that these characteristics warrant illness a philosophical role that has not (...) been articulated. Illness can be used as a philosophical tool for the study of normally tacit aspects of human existence. I argue that illness itself can be integral to philosophical method, insofar as it facilitates a distancing from everyday practices. This method relies on pathological or limit cases to illuminate normally overlooked aspects of human perception and action. I offer Merleau-Ponty’s analysis of the case of Schneider as an example of this method. (shrink)

Can one be ill and happy? I use a phenomenological approach to provide an answer to this question, using Merleau-Ponty’s distinction between the biological and the lived body. I begin by discussing the rift between the biological body and the ill person’s lived experience, which occurs in illness. The transparent and taken for granted biological body is problematised by illness, which exposes it as different from the lived experience of this body. I argue that because of this rift, the experience (...) of illness cannot be captured within a naturalistic view and propose to supplant this view with a phenomenological approach. The latter approach accounts for changes in the ill person’s relationship to her social and physical world. These changes, I argue, cannot be captured by a naturalistic perspective. I then propose the notion of health within illness as a useful concept for capturing the experience of well-being reported by some ill people. I present empirical evidence for this phenomenon and assess its philosophical significance. Finally, I suggest that adaptability and creativity are two common positive responses to illness, demonstrating that health within illness is possible. The three elements combined – the transformed body, health within illness and adaptability and creativity – serve as the basis for a positive answer to the question posed above. (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)

In this panel, we explore the future of value sensitive design (VSD). The stakes are high. Many in public and private sectors and in civil society are gradually realizing that taking our values seriously implies that we have to ensure that values effectively inform the design of technology which, in turn, shapes people’s lives. Value sensitive design offers a highly developed set of theory, tools, and methods to systematically do so.