Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to be the defining feature of (...) what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism. (shrink)

This short encyclopedia entry defines the concept of the normate.

The article introduces readers to the study of disability, both with respect to the interdisciplinary field of disability studies and the field of philosophy of disability. We then offer an overview of three central areas of philosophical inquiry where feminist work in philosophy and disability has made significant contributions: (1) metaphysics and ontology, (2) epistemology and phenomenology, and (3) ethical, social, and political philosophy.

William James, one of America’s most original philosophers and psychologists, was concerned above all with the manner in which philosophy might help people to cope with the vicissitudes of daily life. Writing around the turn of the twentieth century, James experienced firsthand, much as we do now, the impact upon individuals and communities of rapid changes in extant values, technologies, economic realities, and ways of understanding the world. He presented an enormous range of practical recommendations for coping and thriving in (...) such circumstances, arguing consistently that prospects for richer lives and improved communities rested not upon trust in spiritual or material prescriptions, but rather on clear thinking in the cause of action. This volume seeks to demonstrate how James’s astonishingly rich corpus can be used to address contemporary issues and to establish better ways for thinking about the moral and practical challenges of our time. In the first part, James’s theories are applied directly to issues ranging from gun control to disability, and the ethics of livestock farming to the meaning of “progress” in race relations. The second part shows how James’s theories of ethics, experience, and the self can be used to “clear away” theoretical matters that have inhibited philosophy’s deployment to real-world issues. Finally, part three shows how individuals might apply ideas from James in their personal lives, whether at work, contemplating nature, or considering the implications of their own habits of thought and action. (shrink)

Demonstrates the unique, pervasive, and overwhelmingly important role of other people within our lived experience. Drawing on the original phenomenological work of Maurice Merleau-Ponty, Edmund Husserl, Simone de Beauvoir, and John Russon, as well as recent research in child psychology, The Other in Perception argues for perception’s inherently existential significance: we always perceive a world and not just objective facts. The world is the rich domain of our personal and interpersonal lives, and central to this world is the role of (...) other people. We are “paired” with others such that our perception is really the enactment of a coinhabiting of a shared world. These relations with others shape the very way in which we perceive our world. Susan Bredlau explores two uniquely formative domains in which our pairing relations with others are particularly critical: childhood development and sexuality. It is through formative childhood experience that the essential, background structures of our world are instituted, which has important consequences for our developed perceptual life. Sexuality is an analogous domain of formative intersubjective experience. Taken as a whole, Bredlau demonstrates the unique, pervasive, and overwhelmingly important role of other people within our lived experience. (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)

Distinguishing between normal and non-normal cases of perception and motricity is a key part of Merleau-Ponty’s methodology in Phenomenology of Perception. Many feminist philosophers and disability scholars have criticized this use of the normal/nonnormal binary and the presumptions behind it. Others have embraced his methodology and noted its consonance with contemporary feminist, disability, and philosophy of race scholarship. In this paper, I present my own interpretation of what Merleau-Ponty means by “normal”. I draw on Rosemarie Garland-Thomson’s concept of “fit” and (...) also draw attention to the broader existential-phenomenological framework within which Merleau-Ponty is working. This re-framing of the term does two things. First, it provides a clear picture of the hidden methodology at work in Phenomenology of Perception. Second, it offers the possibility of grounding the concept of “fit” in an existential-phenomenological conception of the self. (shrink)

The existential situation of persons who suffer from the locked-in syndrome raises manifold issues significant to medical anthropology, phenomenology, biomedical ethics, and neuroethics that have not yet been systematically explored. The present special issue of Neuroethics illustrates the joint effort of a consolidating network of scholars from various disciplines in Europe, North America and Japan to go in that direction, and to explore LIS beyond clinical studies and quality of life assessments.

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (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)

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)

The current medical approach to erectile dysfunction (ED) consists of physiological, psychological and social components. This paper proposes an additional framework for thinking about ED based on phenomenology, by focusing on the theory of sexual projection. This framework will be complementary to the current medical approach to ED. Our phenomenological analysis of ED provides philosophical depth and illuminates overlooked aspects in the study of ED. Mainly by appealing to Merleau-Ponty’s Phenomenology of Perception, we suggest considering an additional etiology of ED (...) in terms of a weakening of a function of sexual projection. We argue that sexual projection can be problematized through cognitive interferences, changes in the ‘intentional arc’, and modifications in the subject’s ‘body schema’. Our approach further highlights the importance of considering the ‘existential situation’ of patients with ED. We close by reflecting briefly on some of the implications of this phenomenological framework for diagnosis and treatment of ED. (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)

Although scars never disappear completely, in time most people will basically get used to them. In this paper I explore what it means to habituate to scars against the background of the phenomenological concept of incorporation. In phenomenology the body as Leib or corps vécu functions as a transcendental condition for world disclosure. Because of this transcendental reasoning, phenomenology prioritizes a form of embodied subjectivity that is virtually dis-embodied. Endowing meaning to one’s world through getting engaged in actions and projects (...) is most successful indeed when one’s body is “absent,” “transparent,” or, at least, if it is not in the center of one’s attention. This taken-for-granted nature can be disturbed by discomfort, disability, and disfigurement. Incorporation, so I explain, aims at maintaining or restoring the body’s taken-for-grantedness. My analysis of the case of a woman who successfully habituated to her mastectomy scar demonstrates, however, that habituation to a perceptible scar can only be understood partly in terms of incorporation. Next to a decrease of explicit attention for the scar and the discomfort it produces, the scar should also stop being a sign that refers to something else than itself. This is only possible, I argue, by taking the body’s materiality seriously, rather than it being wiped out as a result of transcendental reasoning. (shrink)

Individuals with disabilities face significant challenges, both physically and socially. To claim a disability, therefore, is not something one ought to do lightly. Pregnancy, however, presents a very difficult and interesting case. Pain, discomfort, and inconvenience are often daily aspects of pregnancy, and pregnancy itself can cause physical, as well as social, impediments that can substantially interfere with one's day-to-day work and life. In practice, based on our current laws concerning family leave, ailments brought on by pregnancy can be cited (...) as a temporary disability in certain circumstances. However, the kind of "pregnancyrelated disability" that is built into such leave policies and laws falls short of... (shrink)

We introduce two concepts—social certainty and social doubt—that help to articulate a variety of experiences of the social world, such as shyness, self-consciousness, culture shock, and anxiety. Following Carel's (2013) analysis of bodily doubt, which explores how a person's tacit confidence in the workings of their body can be disrupted and undermined in illness, we consider how an individual's faith in themselves as a social agent, too, can be compromised or lost, thus altering their experience of what is afforded by (...) the social environment. We highlight how a loss of bodily or social certainty can be shaped and sustained by the environments in which one finds oneself. As such, we show how certain individuals might be more vulnerable to experiences of bodily and social doubt than others. (shrink)

An increasing number of scholars at the intersection of feminist philosophy and critical disability studies have turned to Merleau-Ponty to develop phenomenologies of disability or of what, following Rosemarie Garland-Thomson, I call "non-normate" embodiment. These studies buck the historical trend of philosophers employing disability as an example of deficiency or harm, a mere litmus test for normative theories, or an umbrella term for aphenotypical bodily variation. While a Merleau-Pontian-inspired phenomenology is a promising starting point for thinking about embodied experiences of (...) all sorts, I here draw a cautionary tale about how ableist assumptions can easily undermine accounts of non-normate experience. I first argue that the omission or misguided treatment of disability within the history of philosophy in general and the phenomenological tradition in particular is due to the inheritance of what I call “the ableist conflation” of disability with pain, suffering, and disadvantage. I then show that Merleau-Ponty’s famous reading of the blind man’s cane is problematic insofar as it omits the social dimensions of disabled experiences, misconstrues the radicality of blindness as a world-creating disability, and operates via an able-bodied simulation that confuses object annexation or extension with incorporation. In closing, I contend that if phenomenology is to overcome the errors of traditional philosophy, as Merleau-Ponty once hoped, it must heed the insights of “crip” or non-normate phenomenology, which takes the lived experience of disability as its point of departure. [French translation forthcoming in Pour une phénoménologie critique, ed. Donald A. Landes, Quebec City, Les Presses de l'Université Laval/Paris, J.Vrin]. (shrink)

The general aim of this paper is to provide insight into the relevance of critical phenomenology for the study of the patient-provider relationship in health care systems in U.S. jails, prisons, and detention facilities. In particular, I utilize tools from the work of scholars studying phenomenological approaches to health care and structural forms of oppression to analyze several harms that arise from the provision of medical care under the punitive constraints of carceral facilities.

What is the “conventional sense” of disability, and how do the questions addressed in this special issue of Science, Technology, & Human Values differ from those inspired by Donna Haraway and the cyborg? In industrialized societies, the medical profession has authority over the determination of who should count as disabled while “assistive technologies” enable specific kinds of subject positions. In this special issue of STHV, the focus of the essays as a whole is on the different enactments of disability, as (...) complexity that simultaneously implicates bodies, gender, sexuality, technology, and politics. The study of disability offers scope for refinement and further articulation of many issues of long-standing concern to science, technology, and society. In addition, we hope they will encourage further reflection on our field’s normative engagement. (shrink)

The article addresses Jürgen Habermas’ theory of communicative action, which offers very productive tools for analysing disability. The Habermasian division of social reality helps examine positive and negative effects of tensions between the lifeworld of a person with disability and the system. By exploring such an individual's communicative action, one can obtain an insight into his/her validity claims and disruptions in the communication process and self‐understandings inscribed in group narratives. The study reported in the article used in‐depth interviews, which narratively (...) reveal the experiences of a person with disability in family, education, sports and labour. The key findings are, first, that the rationalization of lifeworlds of people with disability increases while processes in which they are colonized by the system intensify; second, that education and family are significant factors in the raising of validity claims; and third, that validity claims as tools of verbal communication should be augmented with arguments from non‐verbal language (e.g. gesture, empathy). (shrink)

Merleau-Ponty se vale de casos patológicos para elaborar una teoría de la percepción que ubica a la corporalidad como expresión central. El artículo indaga y problematiza la experiencia de enfermedad a partir de la propuesta fenomenológica en torno al cuerpo vivido o fe-nomenal. Repensar esta vivencia, desde las antípodas a un abordaje biomédico que la circunscribe a un cuerpo objetivo, permite considerarla a la luz de una perspectiva filosófica como instancia crítica. La experiencia de enfermedad, inaugura una disrupción en el (...) modo de ser-en-el-mundo e introduce la inhabitualidad, como dimensión que participa de una reconfiguración necesaria del esquema corporal. Este aspecto permite repensar los procesos de salud/enfermedad y discutir con concepciones de índole restitutivas, tan características a la hora de abordar los mismos.Merleau-Ponty uses pathological cases to elaborate a theory of perception that places corporality as the central expression. The article investigates and problematizes the experience of illness from the phenomenological proposal around the lived or phenomenal body. Rethinking this experience, from the antipodes to a biomedical approach that circumscribes it to an objective body, allows us to consider it in the light of a philosophical perspective as a critical instance. The experience of illness inaugurates a dis-ruption in the way of being-in-the-world and introduces the unusual, as a dimension that participates in a necessary reconfiguration of the body scheme. This aspect allows to rethink the health / disease processes and to discuss with concepts of a restorative nature, so characteristic when it comes to addressing them. (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)

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)

This essay denaturalizes the taken-for-granted meaning of ‘access’ and interrogates its role and lived meaning in ableist social worlds, with a focus on spaces of higher education. I suggest that legalistic approaches to access need ‘cripping’ by a disability framework. Currently, these approaches (1) miss the intersubjective sociality of being-in-the-world; (2) they prioritize a narrow conception of access focused on ‘physical’ access and ‘physical’ space (a typology I contest); (3) they approach access as frozen in time, rather than as a (...) relational and temporally dynamic process (4); and, finally, they contribute to bureaucratizing and privatizing disability knowledge. I examine ‘access’ through the lens of belonging by asking how we orient ourselves in spaces shaped by oppressive social norms. I argue that ableist lifeworlds generate serious disorientations for disabled people that are lasting, structurally enforced, and harmful or debilitating. (shrink)

In this article, we develop a new approach to integrating philosophical phenomenology with qualitative research. The approach uses phenomenology’s concepts, namely existentials, rather than methods such as the epoché or reductions. We here introduce the approach to both philosophers and qualitative researchers, as we believe that these studies are best conducted through interdisciplinary collaboration. In section 1, we review the debate over phenomenology’s role in qualitative research and argue that qualitative theorists have not taken full advantage of what philosophical phenomenology (...) has to offer, thus motivating the need for new approaches. In section 2, we introduce our alternative approach, which we call Phenomenologically Grounded Qualitative Research (PGQR). Drawing parallels with phenomenology’s applications in the cognitive sciences, we explain how phenomenological grounding can be used to conceptually front-load a qualitative study, establishing an explicit focus on one or more structures of human existence, or of our being in the world. In section 3, we illustrate this approach with an example of a qualitative study carried out by one of the authors: a study of the existential impact of early parental bereavement. In section 4, we clarify the kind of knowledge that phenomenologically grounded studies generate and how it may be integrated with existing approaches. (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)

Musing for Puncta special issue "Critically Sick: New Phenomenologies Of Illness, Madness, And Disability.".

In the formation of the multi-disciplinary field that investigates the participation of disabled persons in all forms of physical activity, little ethical and philosophical work has been published. This essay serves to contextualise a range of issues emanating from adapted physical activity (APA) and disability sports. First, we offer some general historical and philosophical remarks about the field which serve to situate those issues at the crossroads between the philosophy of disability and the philosophy of sports. Secondly, we bring brief (...) but critical attention to the contestation of key concepts such as ?ability? and ?normality? and the recent criticisms of polarisation of the medical and social models of disability. Finally, we show how these conceptual issues are implicated in the whole spectrum of contexts of APA and disability sports from the ethics of research with and for the disabled, to coaching, rehabilitation and teaching, and sports administration, that are predicated on key ethical concepts including empathy, entitlement and equity. (shrink)

Moral particularism, broadly understood, is the position that morality resists codification into a set of rules or principles.1 Jonathan Dancy, particularism's main contemporary proponent, maintains that there are few, if any, true moral principles, and moral reasoning and judgment do not require them. Instead, acts are justified by the salient features of particular situations, and moral reasoning requires attunement to these elements. In rejecting a rule-bound approach to morality, particularists deny pictures of moral education emphasizing knowledge and application of principles. (...) While Dancy offers a competing view of competence, his explanation of the possibility of moral education is inadequate, leaving a... (shrink)

even a brief review of disability narratives shows that many people with disabilities, encompassing a diverse range of impairments, encounter disruptions in their everyday interactions. Individuals with disabilities report that strangers and neighbors alike fail to communicate with them.1 Instead, people defer to friends, partners, and caretakers to offer some command over the interaction. These experiences might be understood as mere annoyances, part of the experience of impairment insofar as it undermines non-disabled individuals’ modes of interaction, leaving them fumbling, seeking (...) assurance that they are handling the situation correctly. But, read less cautiously, these frustrations are emblematic of a... (shrink)

Although previous treatments of affective injustice have identified some particular types of affective injustice, the general concept of affective injustice remains unclear. This article proposes a novel articulation of this general concept, according to which affective injustice is defined as a state in which individuals or groups are deprived of “affective goods” which are owed to them. On this basis, I sketch an approach to the philosophical investigation of affective injustice that begins by establishing which affective goods are fundamental, and (...) then considers which subsidiary goods—such as freedoms, resources, opportunities, and forms of recognition—may be necessary for the provision of those fundamental affective goods. Drawing from and developing ideas in the extant literature, I argue that two such fundamental affective goods include subjective well-being and emotional aptness. I then show that by analyzing deprivations of the subsidiary goods that enable a person to pursue and attain subjective well-being and emotional aptness, it is possible to shed new light on the cases of affective injustice that have been described in the extant literature, while also identifying other kinds of cases that have not been theorized to the same extent. (shrink)

Although by no means mainstream, phenomenological approaches to bioethics and philosophy of medicine are no longer novel. Such approaches take the lived body —as opposed to the body understood as a material, biological object —as their point of departure to offer a more robust understanding of a plurality of experiences that go far beyond those surrounding disease...

This paper argues that the field of philosophy, and bioethics spe­cifically, engages in a series of speech acts that identify scholarship advocating for increased philosophical engagement with the experiences of disability as “activism.” In doing so, the field of philosophy treats these calls as not worthy of consideration, and therefore, to be ignored in “serious scholarship.” Further, this paper makes clear the ways that philosophy relies upon ableism through what Peter Railton calls the “culture of smartness,” which serves as a (...) form of ableist apologia as defined by Jay Dolmage. The paper concludes by using the example of ADHD to indicate how the prevalence of this “culture of smartness” serves to exclude disabled philosophers within the field. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through particular (...) interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (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)

The phenomenological method has been fruitfully used to study the experience of illness in recent years. However, the role of illness is not merely that of a passive object for phenomenological scrutiny. I propose that illness, and pathology more generally, can be developed into a phenomenological method in their own right. I claim that studying cases of pathology, breakdown, and illness offer illumination not only of these experiences, but also of normal function and the tacit background that underpins it. In (...) particular, I claim that the study of embodiment can be greatly enhanced, and indeed would be incomplete, without attending to bodily breakdown and what I term bodily doubt. I offer an analogy between illness and Husserl’s epoché, suggesting that both are a source of distancing, and therefore motivate a reflective stance. (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)

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in place to protect (...) the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia. (shrink)

Our perception of the world and our relationships with other people are not, I argue, distinct activities. Focusing, first, on Merleau-Ponty’s description in the Phenomenology of Perception of his playful interaction with an infant, and, second, on contemporary research on the phenomena referred to as neonate imitation, joint attention, and mutual gaze, I argue that perception can be a collaborative endeavor. Moreover, this collaborative endeavor, which is definitive of both infant and adult perception, entails trust; our trust in others is (...) not simply a feeling that we perceive but also a way of perceiving. As infants, our trust in others is our perception of the world we share with our caregivers as the world we will also share with others; it is our perception of the world we share with our caregivers as real. As adults, we live our trust in others by perceiving the objects that surround us in ways that protect, rather than damage, the shared worlds that we create in our relationships with them. (shrink)

This paper uses an ongoing ethnography of childhood rehabilitation to rethink the Heideggerian phenomenology of death. We argue that Heidegger’s threefold perishing/death/dying framework offers a fruitful way to chart how young people, their parents, and practitioners address mortality in the routine management of muscular dystrophies. Heidegger’s almost exclusive focus on being-towards-death as an individualizing existential structure, rather than the social life with and around death, is at odds with the clinical experience we explore in this paper. After looking to the (...) basic structures of Heidegger’s philosophy of death, we point to recent work by Leder, Svenaeus, Aho, and Carel, bringing health and the spaces of healthcare into our purview. Turning to ethnographic data, we argue that a revised phenomenology of death gives a nuanced account of how health care practitioners address death, dying, and perishing, and outline some steps toward a more ontologically sensitive clinical space. These revisions are in line with recent work in disability studies, that see disability as more than a death sentence. We advocate adjusting phenomenological reflections on disability, to be framed as a way of life, rather than as a deficient or especially deadly mode of human existence. (shrink)

This paper provides a close reading of Erwin Straus’ “The Upright Posture” from a disability studies perspective. Straus argues that the upright posture dominates the human world. But he excludes those who dwell in it otherwise. By reviewing phenomenological disability literature, this paper asks what a disabled phenomenology would look like, one rooted in the problem of inclusion from the outset. Disabled phenomenology addresses ‘subjectivity’ critically, asking: what socio-material arrangements make subjectivity possible in the first place? This project is, I (...) argue, equal parts political economy and existential phenomenology. I conclude with some suggestions for future research. (shrink)

This paper applies a hybrid Heideggerian-ethnomethodological approach to physiotherapy practice. Unlike previous studies written by and for practitioners, this paper uses my personal experience receiving physical therapy as its point of departure. By combining Heidegger’s [Being and time (trans: Stambaugh J). State University of New York Press, New York 1996] notion of the ‘ontological difference’ with Garfinkel’s (Studies in ethnomethodology, Prentice-Hall, Englewood Cliffs 1967) concept of ‘accountability,’ I argue that in physical therapy practice, both client and practitioner actively shape the (...) body into a coherent object for medical intervention. I begin by introducing three key phenomenological concepts, the life-world, the ontological difference, and Heidegger’s critique of subjectivity. I then empirically substantiate these concepts by reviewing classic and recent studies in ethnomethodology. I conclude with my own experience of physical therapy, and demonstrate how both client and practitioner actively constitute the body as a medical and therapeutic object. This is cause for both disability studies and physiotherapy to reconsider some of their core concepts, ‘medicalization’ and ‘client-specific measurement,’ respectively. (shrink)

Disability studies has begun to employ Rosi Braidotti’s posthumanism, as a means to challenge the exclusionary model of man, dominant both in the academy and in everyday life. Braidotti argues that we must embrace a new form of subjectivity to effectively address the academic, environmental and species challenges characterizing the posthuman condition. This critical posthuman subject is inspired, in part, by Baruch de Spinoza, read as a monistic philosopher of difference. In this article, I compare Braidotti’s posthuman philosophy with Spinoza’s (...) Ethics, read through a Deleuzian lens. The two projects are extremely different. My arguments are twofold: first, that Braidotti’s subjective reading overlooks Spinoza’s anti-subjective rationalism; and, second, that we must be cautious about Braidotti’s demands that we jettison all vestiges of man from philosophy, exploring disability or anything else. I make my case using the example of phenomenology. I end by asking what an expanded understanding of Spinoza’s philosophy means for disability studies, for posthumanism and for other forms of radical philosophy in the future. (shrink)

Testimony by disabled people concerning the relationship between their experiences and overall well-being has long been an object of social scientific and humanistic study. Often discussed in terms of “the disability paradox,” these studies contrast the intuitive horribleness of certain impaired states against the testimonial evidence suggesting that people in such states do not in fact experience their lives as horrible. Explanations for why such testimonial evidence is suspect range from claims about adaptive preferences to issues of qualitative research methodology. (...) In this paper, I argue that the problem lies not with the evidence, but the intuitions in question. Using the disability paradox as a case study, I further argue against the use of the concept of intuitive horribleness in social epistemology and beyond. I contend that testimonial and hermeneutical injustices are baked into most deployments of the concept, and even if one were to justify its use in select cases, it should be accompanied with prima facie suspicion. In conclusion, I discuss the implications of this analysis for the literature on transformative experience and also for the stakes of multi-cultural, historically informed philosophical inquiry more generally. (shrink)

Aims and Objectives. This article uses the concept of embodiment to demonstrate a conceptual approach to applied phenomenology. -/- Background. Traditionally, qualitative researchers and healthcare professionals have been taught phenomenological methods, such as the epoché, reduction, or bracketing. These methods are typically construed as a way of avoiding biases so that one may attend to the phenomena in an open and unprejudiced way. However, it has also been argued that qualitative researchers and healthcare professionals can benefit from phenomenology’s well-articulated theoretical (...) framework, which consists of core concepts, such as selfhood, empathy, temporality, spatiality, affectivity, and embodiment. -/- Design. This is a discursive article that demonstrates a conceptual approach to applied phenomenology. -/- Method. To outline and explain this approach to applied phenomenology, the Discussion section walks the reader through four stages of phenomenology, which progress incrementally from the most theoretical to the most practical. -/- Discussion. Part one introduces the philosophical concept of embodiment, which can be applied broadly to any human subject. Part two shows how philosophically trained phenomenologists use the concept of embodiment to describe general features of illness and disability. Part three illustrates how the phenomenological concept of embodiment can inform empirical qualitative studies and reflects on the challenges of integrating philosophy and qualitative research. Part four turns to phenomenology’s application in clinical practice and outlines a workshop model that guides clinicians through the process of using phenomenological concepts to better understand patient experience. -/- Conclusion and Relevance to Clinical Practice. A conceptual approach to applied phenomenology provides a valuable alternative to traditional methodological approaches. Phenomenological concepts provide a foundation for better understanding patient experience in both qualitative health research and clinical practice, and therefore provide resources for enhancing patient care. (shrink)