Oxford University Press
Reviewed by: Joseph Walsh (University College Dublin)
Illness, as Susan Sontag’s famous metaphor runs, is a kingdom for which we all possess a passport. It is an onerous citizenship that we lay aside, ignore, and turn our back on when in the land of the healthy. But each of us will enter that kingdom, some never to return, and it is this habitude of existence, illness, that forms the subject of Havi Carel’s book. In an innovative and at times moving study, she addresses what is involved in the passing through from health into illness. Doing so illuminates the lived-experience of the two sides of our lives: the normal, everyday Being-in-the-world, and the, as Carel holds, limited Being-in-the-world of illness. By examining illness in this way, Carel works to uncover the ‘meaning of both normal and pathological human experience’ by revealing the alterations that our Being-in-the-world undergo. Seen under this light, Carel’s assertion that ‘the study of illness is integral to a philosophical investigation of human existence’ (2) can hardly be denied; her bolder claim that illness has been ‘neglected by philosophers in general’ (1) gives her book an impetus of special moment. Some may disagree with the latter point, but this is by far the most in-depth and thorough study of the subject so far. While illness has received attention from the medical humanities, mainstream philosophy has dealt with illness in a perfunctory way, or else it has been co-opted, as with Plato’s Timaeus or Sartre’s brief discussions, into the agenda of a philosophical system. For this reason Carel calls for a ‘comprehensive philosophical exploration of the experience of illness’ (2), which is explicitly stated as the intention of her book (38). Her study, then, elucidates the importance of illness for philosophy, and the incisive account of illness that it provides takes us an important step forward in realising this.
Alongside contributing to philosophy, Carel’s book carries a second aim: to have her philosophical analysis bear on healthcare’s approach to illness. That approach largely understands illness as ‘a physiological process’ (1) of which, as a standalone interpretation, Carel is critical. It cannot grasp the ‘dramatic and intimate changes to one’s life and being’ that studying the experience reveals; illness, as a mode of existence, ‘affects one’s entire way of being’ (71). Only phenomenology can step up to this task: it reveals the full breadth and depth of the experience and so can ‘helpfully augment clinical medicine’ in its approach to illness. Phenomenology accounts for the features of illness that are not tangible objects of science: the meaninglessness and despair, for example, undergone by those suffering illness (4-5). This is to join forces with a longstanding criticism of mainstream healthcare, namely that a patient’s body is treated without consideration for his or her mental involvement in the affliction, which extends to the wider dispute between objective and subjective approaches in the field. Carel does not dwell on the history of this debate, even in her brief literature review (35-9), but it is what originally brought about the use of phenomenology by scholars of the healthcare disciplines during the 1980s. As such, Carel’s second aim implicitly seeks to close that debate, at least on the subject of illness. Her book certainly achieves much towards the aim of allying healthcare with phenomenology, but in doing so Carel does not reduce phenomenology to a handmaiden of the health sciences; rather, and she states, it is a philosophical work first that ‘can mutually inform and interact with scientific work while remaining independent of it’ (2). Philosophy is always in her sights, and she describes the goal of the book as twofold: ‘to contribute to the understanding of illness through the use of philosophy, and to demonstrate the importance of illness for philosophy.’
It should be stated here that what Carel demarcates as illness is not illness in its totality. Her book deals with ‘serious, chronic, and life changing ill health, as opposed to a cold or bout of tonsillitis’ (2). Moreover, she is primarily concerned with somatic illness rather than, say, depression or schizophrenia and other mental illnesses (19). This bodily species of illness must also be of a sort which ‘is not followed by a complete recovery in a short period of time’ (2). Those illnesses that do resolve themselves quickly are termed ‘minor ailments’, which ‘fit within, and hence do not disrupt, one’s being in the world’ (59; see also 93). Serious somatic illness, as Carel identifies her subject, is that which ‘modifies the ill person’s way of being’ and thus is of existential significance (62) and is life-altering (64). The ‘minor ailments’ and pure mental dimensions of illness receive mention, but Carel’s analysis does not illuminate their structure. For this reason, Carel’s claim that she offers a comprehensive account of illness cannot be upheld by her study; she recognizes as much, despite suggesting the opposite (see 38), in the opening pages of her book by stating that through assessing serious, somatic illness ‘we can identify changes in the global structure of experience that apply to many, or even all, illnesses’ (2). But those illnesses deemed to be minor ailments and purely psychological are excluded, as we have seen, from such a phenomenological structure, and so this position remains to be established by future studies. There is still work to be done, then, in order to gain a comprehensive account of the lived-experience of illness, but Carel’s study certainly leads us in this direction with her focus on serious and long-standing somatic illness.
The study begins by distinguishing illness from disease. The latter is a ‘biological dysfunction’, the object of medical science, which the subject does not necessarily need to be aware of (15-17; see also 47). The former, by contrast, is ‘the experience of disease’ through which ‘a complete transformation of one’s life’ occurs. The experience of disease is what constitutes illness. One can therefore be diseased and not ill, and vice versa. Such a view, of course, is difficult to align with mental illnesses that have no somatic root, which Carel recognizes but does not attempt to seriously resolve (17, fn. 4: ‘it may be that medical knowledge is currently unable to identify the disease’; see also 45), and with congenital illness, of which Carel, arguing more strongly, holds the illness to be the ‘gradual realisation of one’s different needs and abilities’ (74, fn. 2). Nonetheless, her focus on somatic illness does not require a deeper analysis into the relation between mental illness and disease. The disease-illness dichotomy Carel draws is a perceptive and firm basis on which she can establish the experiential dimension required for the following phenomenological analysis.
This analysis starts with, building on Husserl and Merleau-Ponty’s conceptions of embodiment (27-9), the distinction between the lived-body and the objective-body (46ff.). Carel determines that ‘it is on this level that illness, as opposed to disease, appears’ as the lived-body offers the experience of illness and the objective-body is the site of disease. That experience relates to the habitual activities of the lived-body in its everyday world: ‘The habitual body loses its expert performance skills and these have to be replaced or modified’ in illness. A person’s way of being is thus affected, and so the intentional arc in our relation to the world (33); thus, one’s ‘existential situation’ of Being-in-the-world is altered. The body becomes an obstacle for one’s everyday endeavours and makes it conspicuous to oneself, and so illness ‘reveals the difference between the objective body and the habitual [lived] body’ (49) because it ‘creates areas of dramatic resistance in the exchange between body and environment’ (58). In everyday experience, by contrast, the two are ‘aligned and harmonious’ (55) as part of a seamless interaction with the world. In view of this, Carel terms the healthy body ‘transparent’: it is not an object of attention in our everyday, healthy actions. In illness, with the schism that emerges between object- and lived-body, that transparency is lost once our attention is drawn to the body’s malfunction (56-7). The loss of transparency ‘takes over one’s way of being, constricting the range of possible actions and hence restricting choice’ which is to ‘delimit’ one’s Being-in-the-world (58-9). The experiential structure of one’s life is altered as the ‘opportunities, possibilities and openness’ of one’s life, activities, and goals are ‘closed down (68). Illness is thus life-altering on an existential plane (62) because it affects one’s Being-in-the-world.
The loss of transparency, with its accompanying freedoms, choices, and goals, is the root cause for the change in the experiential structure of the ill-life. It is the totality of what is lost in Toomb’s influential theory of the five losses (see 42-3: wholeness, certainty, control, agency, everyday-ness), a theory that Carel used to broach the rift between the healthy and the ill existences. Carel sought the singular ‘something’ that is ‘taken away’ and which ‘falls under these five broad types of losses’ (65). With this theorisation, Carel certainly does strike upon the underlying cause beneath Toomb’s account of illness, and she explains those five losses within her theory. This focus on loss does not, however, overlook the edifying factor that illness can have. In a later chapter Carel does come to consider that, but let us remain for the moment with the central notion that illness is a loss of the everyday, habitual lived-body’s seamless interaction with the world.
The everyday habits we had previously engaged in had constituted a meaningful world (31), and in the changed experience of the body’s abilities, which grounds the ill experience, that meaningful world is altered. It is, as Carel notes, a ‘practical source of meaningfulness’ rooted in the habitual activities that form our everyday experience of the world (29). In discussing meaning in the ill experience, Carel incorporates Heidegger’s tool analysis from Sein und Zeit. The concerned dimensions Heidegger theorised of ready-to-hand, present-at-hand, and unready-to-hand, ‘invites the analogy to illness’ (61). The ready-to-hand as inconspicuous is equated to the healthy body, and present-at-hand to a part of the body that has failed and been made conspicuous in its failing of an habitual, and so meaningful, activity. While assuring us that the analogy holds, Carel has to admit that they do not bear much of a similarity because ‘Our bodies cannot be replaced or repaired as readily as tools’ (62). That is certainly a correct view given Heidegger’s own gloss on the -to-hand conceptual framework not being applicable to the body: the ‘Leiblichkeit’ is a problem of its own not to be worked out in Sein und Zeit (1967, 108). Evidently something different would have to be conceptualised to account for the body without having to revise the text and its concepts; indeed, for the body to be present-at-hand it would have to be unmeaningful and so unintelligible for Dasein, which seems impossible on account of the fact that the body is part of Dasein’s own facticity. Nonetheless, the tool analogy bears no great importance in Carel’s study as it is only mentioned in passing once more (99) and the complications surrounding its applicability for the body play no further part in the study.
When Heidegger surfaces again, Carel does not recall the tool analysis. Instead she focuses on Dasein’s existential condition of Being-able-to-be (Seinkönnen). This condition is related to the loss that illness causes in one’s way of Being as an inability-to-be (80). It is an inability-to-be, Carel claims, because the freedom and openness of the world is closed down, and one no longer has the possibility of Being-able-to-be (84). Meaning hovers in the background of this discussion as that which is constituted by our habitual activities: the possibilities of our everyday Being-able-to-be. Carel, again, needs to alter Heidegger’s theorisation for her position; she does so by re-construing inability-to-be from its association with death in Heidegger (81). For Carel, ‘An inability to be is a modification of an ability to be that is lost’ (84) rather than the impossibility of Being-there that constitutes death for Heidegger. It is a position that I do not believe is or can be supported by Sein und Zeit. When Carel applies her conception to illness, it is made with the sense that one’s ability to be X has been compromised, and so one is unable to fulfil the goals and activities associated with being X: the ability to be this or that (see the discussion on being an athlete, 80-81). With this understanding, the inability to continue a practical engagement with the world as X is determined as an inability-to-be. This is a transitive reading of ability-to-be, or Seinkönnen, whereas the text suggests it is intransitive. Heidegger associates it with understanding (Verstehen), which we will return to later, and speaks of it as prior to the particular, transitive possibilities of Being that Dasein has gotten itself into (S&Z 1967, 144). Dasein’s ability-to-be is concomitant with the existentiale of Verstehen, and so is part of Dasein’s structure in its Being-in-the-world; Dasein in being Dasein always has the futurally orientated to be of its ability-to-be in its own structure as a Being that is always projecting on a world-disclosed understanding of Being. The point is that Dasein always exists with an intransitive ability to be. This is different to the transitive ability-to-be-X of a particular understanding that Dasein projects on as part of a towards-which, which Carel posits the loss of as an inability-to-be. Carel’s inability-to-be-X is the possibility of the non-possibility for an understanding of oneself as being X, and not the non-possibility of one’s intransitive to be in Being-there. Inability-to-be as the antonym of ability-to-be would operate on the same intransitive level, which is to say that it would be the impossibility of Dasein’s to be, which is to say: death, the futural not-Being-there of Heidegger.
The consequences of not distinguishing an inability-to-be-X from an intransitive inability-to-be do not have a huge impact on the development of Carel’s position. It does, however, create a small tension when she comes to discuss the ‘process of adaptation’ that occurs in the experience of well-being in illness (130). That process is evident in the fact that ‘we adapt to – and therefore cease to feel the impact of – changes to things that affect our hedonic state’ (135) and that we can ‘get used to radically different (and radically curtailed) forms of embodiment’ (145-6). It seems, then, that the habitual, everyday experience of our ability-to-be-X changes. The X of one’s to be in this process is certainly something other because illness ‘dramatically chang[es] the ways of being that are available to a person’ and thus prompts ‘them to modify their way of being’ (142). Carel, in an important point for our understanding of illness, explains the edifying effect that an experience of illness can have in the modification of one’s way of Being and the consequently changed priorities (viz. goals, values, meaning structures) and the strengthened relationships one can develop (see 140-47). However, if the habitual, everyday experience of the world changes and becomes possible for the ill person, then it suggests that there is a shift in one’s inability-to-be-X, the core of the ill-experience, to an ability-to-be-Y. That ability-to-be-Y affords Dasein with a new set of meanings in its practical engagement with the world. It is effectively saying that if this change can succeed then illness, as the experience of a transitive inability-to-be, has ended so long as one has before them a transitive ability-to-be. Carel, I believe and quite correctly, wants to maintain the inability-for-being-X once one’s way of Being, with its goals and priorities, has changed to an ability-to-be-Y but the schema needs to be elaborated further to achieve this. Dasein’s own Verstehen in its relation to the possibilities of its ways of Being needs to be considered to connect the possibilities and non-possibilities open to it in its relation to the world. This would result in meaning being tied to one’s understanding of Being, as I understand it in Sein und Zeit, instead of to the practical –to-hand of the worldhood of the world. Regardless of these particulars, the work Carel has done here makes an important link between adaptation and edification with a shift in habitual everyday experiences. It is an important denouement of the study and a great stride forward in our understanding of illness.
In a particularly engaging and thoughtful chapter, which has appeared outside of this volume, Carel works to demonstrate how illness contains within it bodily doubt, namely ‘A sense of doubt about a routine activity that pervades you’ (87). That routine activity is, of course, part of the habitual, lived-body of the everyday experience in our ability-to-be. Ordinarily we have an inexplicit ‘bodily certainty’, but the loss of our everyday ability-to-be brings about a doubt in our bodily capacities; we lose the ‘subtle feeling of “I can” that pervades our actions’ (90). That doubt renders an explicit awareness of our body that breaks the transparency that the body has in bodily certainty (88). The earlier schism between the lived body and objective body gives rise to this bodily doubt which forms part of one’s awareness of their inability-to-be what they are ordinarily able-to-be (91-2). Bodily doubt, then, is the experience of one’s inability-to-be-X as the experience of illness.
Part of being ill, in the serious cases of Carel’s study, is that death looms large in the experience. An entire chapter is quite rightly devoted this facet of illness. The connection between the pair is quickly boiled down to one’s inability-to-be: ‘If illness is characterized by a degree of “being unable to be” death can be seen as total inability to be, the closure of all existential possibilities’ (150). The pair are entwined in serious illness because illness ‘reveals that human life is finite’ of which death is the final determination (151). For this reason, the ill experience is posited as one of Being-towards-death. Just what death consists of concerns Carel, and of course any discussion on death within a Heideggerian framework demands an exploration of authenticity and inauthenticity. On this front Carel develops an interesting and engaging view of authenticity and Being-towards-death which does not divorce either from the everyday world and das Man; she endeavours not to have authenticity so highly individualised to the point of solitude as many have held Heidegger maintained. A distinction is drawn between the oft-discussed demise and death of Heidegger, with Carel making the case that they should be understood with respect to how we relate to them. Demise, she convincingly claims, is an inauthentic relation to death, whereby death is substituted for the fear of a future event (161). In doing this, death is ‘levelled down to an ontic event because it is not understood as an existentiale, a way to be’. Death, authentically understood, is instead ‘a new openness or ability to view oneself as a whole; it is a structural shift’ that catches sight of the temporal finitude underlying one’s everyday existence (176). It creates a ‘struggle and conflict with death and finitude’ that pervades our Being-alongside and Being-with in our everyday experience of the world (177). Under this reasoning, authenticity does not remove ‘all other points of view from a person’s self understanding’, while also implicitly maintaining the essential awareness of the mine-ness of one’s Being and death that Heidegger embeds in authenticity. The point of this is that the same struggle and conflict in one’s authentic relation to death, for Carel, constitutes an authentic relationship to illness as a way of Being that is one of Being-towards-death. What an authentic relationship to illness provides is ‘the possibility of accepting illness and existing with it without denial or fleeing’ and so ‘Our understanding of illness stands to gain’ (178). That gain presumably consists of the ‘more compassionate experience of illness and finitude’ which can occur between the ill and healthy once an authentic basis for a relation to illness has been established (177). The exciting analysis ends there, and one feels that it could have been brought further by discussing the possibility of there being a relationship between the edifying character of illness, discussed earlier, and an authentic relation to illness: does the emerging ‘self-understanding’ of one’s finite existence create the possibility for an edifying experience of illness?
The reader will not find an answer to that tantalising question because Carel’s study veers away from any focused discussion on Dasein’s understanding of Being (Verstehen) and its relation to the possibilities of Dasein’s ways of Being. The few mentions are isolated to the chapter on death (viz. ‘illness provides a view of mortality that can profoundly change one’s self-understanding’, 156) and allusions occur when discussing illness in relation to well-being and edification (viz. ‘This process is one of reflective shaping and guiding of one’s way of being’, 142). By addressing Verstehen directly, a deeper understanding of illness and its relation to one’s way of Being can be provided since Verstehen is what regulates one’s way of Being in the disclosure of the possibilities for Being. The restructuring under a different Verstehen of the goals, values, and meaning of one’s life (i.e. one’s priorities) in illness as the possibility for an edifying experience of illness could be linked with the new, as Carel terms it, self-understanding of one’s finitude in an authentic relation to illness. After all, both cases involve a shift in one’s understanding of Being as part of the ‘modified’ way, hence new possibility, of Being that is undergone. How one self-understands in illness can be further elaborated by reflecting on the conjunction between Verstehen and Seinkönnen, so that the way of Being that illness stands as can be further defined from one’s everyday experience and with regard to the adaptive process one can undergo in terms of both well-being and edification.
The penultimate chapter is an engaging and illuminating study on epistemic injustice in healthcare. It was co-written with Ian James Kidd and has appeared elsewhere, but its place in this study is well-suited as its builds somewhat on the previous chapter’s ‘gain’ of an authentic relation to illness, and endeavours to make a significant contribution, via phenomenology, to healthcare practice. Epistemic injustice is shown to consist of attitudes that ‘lead interlocutors to treat ill persons’ reports with unwarranted disbelief or dismissiveness’ (180). Those attitudes involve the clinician considering the patient to be ‘cognitively unreliable, emotionally compromised, or existentially unstable in ways that render their testimonies and interpretations suspect’ (182). There are, Carel recognises, some good reasons for the clinician to have this attitude, but the healthcare environment can lead to the clinician ‘denying [the patient] the role of a contributing epistemic agent’ which is ‘a distinct form of epistemic exclusion’. The specialised medical knowledge of the clinician is one reason for why the healthcare setting is particularly prone to epistemic exclusion’: it privileges the clinician ‘in ways that structurally disable’ the patient’s own testimony (183). This creates an ‘asymmetry in the relationship’ between clinician and patient in terms of the epistemic status of their testimonies, namely that the clinician’s carries more weight and so he or she is the more powerful figure (194). This ‘epistemic privilege’, as it is termed, is, in a particularly adroit argument, related back to the disease-illness dichotomy and the focus of medical practice centring on disease: ‘the goal of medicine is to repair physiological mechanisms’, and so under this impetus the patient’s own subjective, often emotional, testimony is secondary to the specialised knowledge of the clinician on physiological matters. To resolve this and bring the focus to bear on illness, Carel advocates a phenomenological toolkit as a ‘patient resource’ that is also ‘aimed at training clinicians’ (199). This toolkit appears to serve the purpose of creating a shared language between clinician and patient by helping them to articulate their experience to the clinician and to make the clinician more aware of the content articulated. Through bracketing and thematising, the patient and clinician can come to terms with illness in a ‘tentative, descriptive mode’ that attends to the emotive aspects of the experience (200-201). This allows for an understanding in the healthcare setting of ‘new way of Being in the world’ that illness comprises of (201), and which the other chapters had shown to be an inability-to-be. In this way, the ‘pervasive effects illness may have on one’s sense of place, interactions with the environment and with other people, meanings and norms,’ etc. can be dealt with. This is to treat illness as opposed to disease in the illness-disease dichotomy. The value of phenomenology for healthcare practice, then, has its case convincingly made in this section of the study.
The final chapter comes to consider what special benefit illness can provide philosophy with. This comes to centre on ‘illness as a mode of philosophizing’ (213) through the changed way of Being it brings about. The break with the habitual everyday way of Being stands as a particular type of epoché through which the everyday can be assessed and the change from the everyday as an alternative perspective can be understood (215-16). This ‘provides opportunities to uncover facets of existence that are not normally visible’ (216). In this way, illness can be both a tool to philosophise with and an object of philosophical investigation that can reveal an alternative perspective in the concepts we have developed within the everyday experience of the world.
In closing, Carel’s monograph provides a careful analysis of illness that demonstrates it to be a particular way of Being-in-the-world. The study makes many astute and sharp observations on the development of illness, the particular characteristics it contains, and how these relate to problems with its treatment in the healthcare environment. There are times in which the nature of the study makes for difficult reading due to its subject matter, and that is an indication of how well Carel has confronted the negative aspects surrounding illness. The study certainly opens one’s eyes to the difficulties undergone in the everyday activities of the ill-person, and the effect of the book will remain with the reader. On an academic level, it has made a convincing case for the use, indeed necessity, of phenomenology for healthcare practice in its treatment of illness as the experience extends far beyond being diseased. Within philosophy, it is the most valuable and detailed work on the subject so far, and while there are still avenues to pursue in constructing an all-embracing phenomenology of illness in its mental and non-critical dimensions, Carel’s study has mapped them out for us. That kingdom is no longer cloaked in darkness.