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)

In this paper, I address the effects of social distancing for embodied lived experience in relation to dementia care and experiences of dementia. From a critical phenomenological perspective, I focus specifically on the safety measures of physical distancing and face-masking in pandemic times, asking whether they might risk marginalizing and disembodying people with dementia, especially in isolated healthcare settings. As much as these measures offer physical protection against spreading the virus, I consider how they might disrupt intersubjective processes (e.g., calming (...) social or therapeutic touch) and contribute to “an alienated bodily communication” (Dolezal 2020). From Husserl and Merleau-Ponty’s philosophies of embodiment and enactive theories of intersubjectivity, to more recent phenomenological work on illness, many authors argue that our existential being-in-the-world is embodied in multimodal and intersubjective ways (Fuchs and De Jaeger 2009; Carel 2016; Ratcliffe 2008; Kontos 2011). For this reason, our lived bodies need to stay in touch and positively interact with other lived bodies. Based on empirical studies of multisensory and interactive therapy in nursing homes before and during the COVID-19 pandemic, I emphasize the effects of distant socializing for patients, care, and carers. My aim is to address the broader structures and discursive practices, which have undergone dramatic changes due to the spread of COVID-19. (shrink)

In this article some of the presuppositions that underly the current ideas about decision making capacity, autonomy and independence are critically examined. The focus is on chronic disorders, especially on chronic physical disorders. First, it is argued that the concepts of decision making competence and autonomy, as they are usually applied to the problem of legal (in)competence in the mentally ill, need to be modified and adapted to the situation of the chronically (physically) ill. Second, it is argued that autonomy (...) and dependence must not be considered as two mutually exclusive categories. It is suggested that decision making may take on the form of a more or less conscious decision not to be involved in making all kinds of explicit and deliberate decisions. Elaborating on Agich's distinction between ideal and actual autonomy, the concept of Socratic autonomy is introduced. (shrink)

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical (...) interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. (shrink)

The vulnerability of a patient gives rise to special obligations to provide aid, but the extent of our obligations to those vulnerable is not always clear. How far we are obligated to provide aid raises profound questions over the balance of liberty, equality, utility, and other core values for which we ought to strive in modern society. This essay helps illustrate how such a balance must be worked out in relation to rich contexts and be responsive to continually evolving epistemic (...) and social configurations. (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)

Thinking in medicine is still dominated by the cartesian view of science of the past centuries, dividing individuals into the reasoning mind (res cogitans) and an objective body as part of all non-subjective things of the world (res extensa). This classical scientific paradigm does not take into account the influence the observer exerts on the observed phenomena. Applying this paradigm to medical research and education has consequences regarding the relationship between physicians and patients as well as between medical teachers and (...) their students. An improvement of medical education towards a broader understanding of complex illnesses with their psycho-social implications must be based on philosophical and epistemological issues. The requirements of modern medicine cannot just be met by adding more psycho-social content to somatic medical education or by changing the didactic approach without reflection on the underlying concepts and the relation of the human being to his world. (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)

The paper argues that the idea of gift-giving and its associated imagery, which has been founding the ethics of organ transplants since the time of the first successful transplants, should be abandoned because it cannot effectively block arguments for markets in human body parts. The imagery suggests that human bodies or their parts are transferable objects which belong to individuals. Such imagery is, however, neither a self-evident nor anthropologically unproblematic construal of the relation between a human being and their body. (...) The paper proposes an alternative conceptualization of that relation, the identity view according to which a human being is identical with their living body. This view, which offers a new ethical perspective on some central concepts of transplant medicine and its ethical and legal standards and institutions, supports widely shared intuitive ethical judgments. On this proposal, an act of selling a human body or one of its parts is an act of trade in human beings, not in owned objects. Transfers of human body parts for treatment purposes are to be seen as sharing in another human being’s misfortune rather than as giving owned objects. From the perspective of policy-making, the proposal requires, first, that informed consent for removal of transplant material be obtained from the potential benefactor. Secondly, explicit consent by the prospective benefactor is obligatory in the case of removal of transplant material from a living benefactor. Thirdly, in the case of posthumous retrieval, informed consent by the potential benefactor during their life is not ethically indispensable. Additionally, while refusal of posthumous retrieval expressed by a potential benefactor during their life must be respected, such a refusal needs ethical justification and explanation. (shrink)

Abstract.This paper critiques particular aspects of the published UK government Department of Health’s proposal to promote ‘The Expert Patient’ as a way of enhancing patient autonomy and reducing reliance on limited health care resources. Although the broad aims of the report are supported the detail is criticised on the basis that lack of clarity over key terms, including ‘expert’ ‘illness’ and ‘disease’, means that there is no clear focus for action and threatens to undermine the effectiveness of the proposals.

This paper explores causation in the context of health care practice, in particular, primary care. Causation in health care is necessarily premised on the concepts of disease and illness and the ways they are deviations from health. The paper reviews and broadly categorises concepts of illness most commonly found in the literature in terms of the biomedical, biopsychosocial, and agency models. It is argued that although each model has its place in the gamut of health care practice, primary care implicitly (...) or explicitly uses an agency model most frequently. By explicitly acknowledging the role that patients’ values and expectations have in utilising their physiological, psychological and social capacities to live their lives, clinicians can gain a clearer understanding of how a situation has come about and why it has become a health problem for the patient. (shrink)

In this paper I briefly summarize Pellegrino’s phenomenological analysis of the ethics of the physician–patient relationship. In delineating the essential elements of the healing relationship, Pellegrino demonstrates the necessity for health care professionals to understand the patient’s lived experience of illness. In considering the phenomenon of illness, I identify certain essential characteristics of illness-as-lived that provide a basis for developing a rigorous understanding of the patient’s experience. I note recent developments in the systematic delivery of health care that make it (...) difficult for health care professionals to realize Pellegrino’s ethical model of the role of healer. Such developments limit both the physician’s freedom to act on behalf of the patient without the constraint of third parties and the physician’s freedom to act in light of his or her own ethical or religious convictions. Given these difficulties, I note MacIntyre’s call for the development of moral communities, as an alternative to the prevailing culture, and share a first-hand example illustrating how intentional Christian community provides an alternative nurturing context that permits the full development of the healing relationship. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss of (...) mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (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)

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)

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 ( 1956 ). The three steps identified by Sartre in this process are analysed, developed further and brought to a five-step model: (1) pre-reflective experience of discomfort, (2) lived, bodily discomfort, (3) suffered illness, (4) disease pondering, and (5) 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 (and perhaps also patients) about the ways of the lived body. (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)

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)

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)

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)

A large slice of contemporary phenomenology of medicine has been devoted to developing an account of health and illness that proceeds from the first-person perspective when attempting to understand the ill person in contrast and connection to the third-person perspective on his/her diseased body. A proof that this phenomenological account of health and illness, represented by philosophers, such as Drew Leder, Kay Toombs, Havi Carel, Hans-Georg Gadamer, Kevin Aho, and Fredrik Svenaeus, is becoming increasingly influential in philosophy of medicine and (...) medical ethics is the criticism of it that has been voiced in some recent studies. In this article, two such critical contributions, proceeding from radically different premises and backgrounds, are discussed: Jonathan Sholl’s naturalistic critique and Talia Welsh’s Nietzschean critique. The aim is to defend the phenomenological account and clear up misunderstandings about what it amounts to and what we should be able to expect from it. (shrink)

A well-worn trope used by phenomenologists is that things that remain invisible or unnoticed in the course of our everyday being in the world reveal themselves in instances of breakdown. This paper borrows this trope to explicate one instance of breakdown, that of traumatic spinal cord injury (TSCI). We use the phenomenology of Heidegger, especially his formulation of ecstatic temporality presented in Being and Time, to illuminate the temporal issues surrounding this radical rupture in Dasein’s being in the world through (...) data collected from field observations of inpatient rehabilitation, interviews with persons with TSCI, and with their rehabilitation providers. Specifically, we explore the breakdown in temporality (the rupture on thrown projection) that occurs in persons who experience TSCI across three interconnected existential dimensions – understanding, attunement (mood), and falling. We conclude by discussing the value this approach to human temporality might have for both social scientists interested in human temporality and to practitioners interested in research related to the rehabilitation process. (shrink)

In this article, the notion of re-embodiment is developed to include the ways that rearrangement and renewals of body schema take place in rehabilitation. More specifically, the embodied learning process of acquiring wheelchair skills serves as a starting point for fleshing out a phenomenological understanding of incorporation of assistive devices. By drawing on the work of Merleau-Ponty, the reciprocal relation between acquisition habits and incorporation of instruments is explored in relation to the learning of wheelchair skills. On the basis of (...) this, it is argued that through learning to manoeuvre the wheelchair, a reversible relation between is established between the moving body-subject and the wheelchair. In this sense, re-embodiment involves a gestalt switch from body image to body schema. (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 will show how the medical image, presented to the patient by the physician, participates in medicine's cold culture of abstraction, objectification and mandated normativity. I begin by giving a brief account of the use of anatomical imaging since the Renaissance to show how images have historically functioned in contrast to how they are currently used in medical practice. Next, I examine how contemporary medical imaging techniques participate in a kind of knowledge production that objectifies the human (...) body. Finally, I elucidate how physicians ought to place the medical image within the context of the lived body so as to create a healing relationship with the patient. In all this I hope to show that the medical image, far from a piece of objective data, testifies to the interplay of particular beliefs, practices and doctrines contemporary medicine holds dear. To best treat her patient, the physician must appreciate the influence of these images and appropriately place them within the context of the patient's lived experience. (shrink)

Peer learning involves processes whereby inexperienced persons learn from persons with more experience. Previous research has shown the benefit of peer learning to the rehabilitation process of people with spinal cord injuries and others using a wheelchair, yet discussions of problematic aspects are scant. Thus, the purpose of this article is to highlight two problems with peer learning. By presenting a vignette elaborated from a phenomenologically oriented case study of a wheelchair skills program at a Norwegian rehabilitation unit, the problem (...) of a naive view of empathy and the danger of inflicting symbolic violence are reflected upon. These reflections, though tentative, draw attention to the ethical responsibility of rehabilitation professionals who use peer learning as a part of their intervention. (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)

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)

Evaluation of quality of life, psychic and bodily well-being is becoming increasingly important in oncology aftercare. This type of assessment is mainly carried out by medical psychologists. In this paper I will seek to show that body experience valuation has, besides its psychological usefulness, a normative and practical dimension. Body experience evaluation aims at establishing the way a person experiences and appreciates his or her physical appearance, intactness and competence. This valuation constitutes one’s ‘body image’. While, first, interpreting the meaning (...) of body image and, second, indicating the limitations of current psychological body image assessment, I argue that the normative aspect of body image is related to the experience of bodily wholeness or bodily integrity. Since this experience is contextualized by a person’s life story, evaluation should also focus on narrative aspects. I finally suggest that the interpretation of body experience is not only valuable to assess a person’s quality of life after treatment, but that it can also be useful in counseling prior to interventions, since it can support patients in making decisions about interventions that will change their bodies. To apply this type of evaluation to oncology practice, a rich and tailored vocabulary of body experiences has to be developed. (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)

The aim of this paper is to clarify what “phenomenological” means in the phenomenological researches of nursing and what “method” is or should beadopted in phenomenological researches of nursing. The essay first defines a traditional classification of the phenomenological researches of nursing by Cohen and Omery, and then gives a new attempt to classify the phenomenological approaches in the theories of nursing. On this basis, the essay reviews some representative “phenomenological” researches of nursing today and addresses critical comments to them. (...) Finally, the essay will make clear what “phenomenological” should mean in the phenomenological research of nursing and what kind of “method” should be adopted in those researches. (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)

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)

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)

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

[Excerpt]: In the nonideal world against which philosophical ideas and ideals are tried, suffering is distributed unequally. A central, if not defining, question for many late-twentieth-century feminist ethicists is how and why so many forms of suffering are distributed by virtue of bodily difference. For over four decades, disability studies, a multidisciplinary field spanning the humanities and social sciences, has principally revolved around a basic question: is the concept of "disability" constructed like "race," "gender," or "sexuality"? In other words, is (...) it as much a construct as any category historically deployed to justify socially produced sufferings, inequities, and hierarchies and to disenfranchise, stigmatize, and... (shrink)

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)

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 “patient perspective” serves as an analytical tool to present patients as knowing subjects in research, rather than as objects known by medicine. This paper analyses problems encountered with the concept of the patient perspective as applied to long-term mental health care. One problem is that “having a perspective” requires a perception of oneself as an individual and the ability to represent one’s individual situation in language; this excludes from research patients who do not express themselves verbally. Another problem is (...) that the idea of “talk” as a representation of the world ignores the fact that talk is also performative in the world: it requires, at least, the ability to deal with an interview situation. To think up alternative ways of including patients as subjects in research, I develop an approach that takes this performativity as a starting point. Analysing practical situations and activities, I argue that patients enact appreciations, making known what they like or dislike by verbal or non-verbal means in a given material environment, in situations that are co-produced by others. Thus, subjectivity is linked to situations and interactions, rather than just to individual characteristics; to “patient positions,” rather than “patient perspectives.”. (shrink)

In this paper I explicate what it means to see phenomenologically for an able-bodied researcher in the field of disability, and how this seeing yields a non-reductionistic understanding of the phenomenon of disability. My aim is to show how in this context, I, as a human and social scientist can use phenomenological methodology for both collecting and interpreting data. Though phenomenological philosophy can provide the basis of social scientific epistemology, it does not lend itself easily to a single specific or (...) programmatic social scientific methodology. I offer possible ways of using phenomenological theory, methodology and techniques in order to understand the experience of a person with physical disability learning to use a wheelchair. I use data from a clinical encounter between a physical therapist (PT) and an adult with Spinal Cord Injury (SCI) in an inpatient rehabilitation hospital in Midwestern United States in order to flesh out phenomenological seeing. I conclude with implications for qualitative researchers who use phenomenological methods to inform their work. (shrink)

The present paper explores patients’ experience of lived space at the hospital and at home. To expand the understanding of the existential meaning of lived space the study revisited two empirical studies and a study of a meta-synthesis on health and caring. Phenomenological philosophy was chosen as a theoretical framework for an excursive analysis. The paper demonstrates that existential dimensions of lived space at the hospital and at home differ significantly. For the patients, the hospital space means alien territory as (...) opposed to the familiar territory of home. To some extent the experienced differences are due to the physical environment; however, as our analysis shows, other and more significant meanings are also involved. For patients, lived space at the hospital primarily concerns the influence of complex institutional power structures and specific cultural and social conventions, e.g. the role of the good patient and the ambiance of hospitals. Home, on the other hand, offers familiar lived space in which patients feel protected and safe. Further, the paper relates patients’ experience of lived space to a phenomenological view of lived space in order to illustrate the radical influence of illness on patients’ lifeworld and experience of lived space. The combination of illness and general discomfort may influence patients’ experience of home negatively; the former experience of home as a sanctuary changes into feelings of being left on one’s own and burdened by too much responsibility. Consequently, in the light of the increasing focus on patients’ self-monitoring at home, it is important for healthcare professionals to recognize the influence of spatial aspects on patients’ well-being both at the hospital and at home. (shrink)

Phenomenology of illness has grown increasingly popular in recent times. However, the most prominent phenomenologists of illness defend a psychologizing notion of phenomenology, which argues that illness is primarily constituted by embodied experiences, feelings, and emotions of suffering, alienation etc. The article argues that this gives rise to three issues that need to be addressed. (1) How is the theory of embodiment compatible with the strong distinction between disease and illness? (2) What is the difference between problematic embodiment and illness? (...) (3) How is existential edification, that illness can give rise to according to the phenomenologists, to be understood? The article then engages in an analysis of Heidegger’s and Waldenfels’ phenomenology with the ambition of developing a notion of existence, which can transgress the psychologization of illness. Rather than arguing that illness is constituted by experiences of suffering and alienation, it emphasizes that broaches upon conatively guided activities constitute illness. (shrink)

This paper aims at explicating the role of the connections and interactions between health, well being and beauty. The primary goal of all medical approaches, including the classic biomedical and humanistic or humane approaches, is to restore or create health, whereby medical approaches that include prevention go beyond the mere restoration of health to include the preservation of health. Equating well-being and thus health with a largely self-determined and joyful life, then not only does a healthy life become a beautiful (...) life, a beautiful life also becomes a healthy life! By bringing Beauty into the health discourse, we are entering the field of aesthetics in general and social aesthetics in particular. As the beautiful is not just a decorative element of life but a genuine source of human strength, it gives us the strength and power we need to implement and achieve all that we then experience as “well-being” and that is called a healthy life. Therefore a further development of a human-based medicine is needed, a medicine that focuses not on a disease construct but which places a human being as a whole, with all his potential and limitations at the heart of diagnostic and therapeutic efforts. The noblest therapeutic goal of this kind of medicine can only be the restoration or preservation of a comprehensive state of health in the sense of complete physical, mental and social well-being, in the sense of opening up the possibility for a mostly autonomous and joyful life. (shrink)