Disability and Rehabilitation, September 2006; 28(18): 1109 1118

RESEARCH PAPER

Pain, disability and rehabilitation practices. A phenomenological perspective

MYRIAM WINANCE
INSERM CERMES Research Centre for Medicine, Sciences, Health and Society, CNRS UMR 8169, EHESS, INSERM U750, Villejuif, France
Accepted December 2005

Abstract Purpose. Rehabilitation experts and disabled people are faced with the question of pain on a daily basis. This is a complex phenomenon with various different aspects: physiological, social, cultural and personal experience. In this article the author focuses on the personal experience of pain, i.e., the way in which it is experienced by the person in question and how it changes that person, his/her body and life; the author refers to cases of people who became disabled following a road accident or a neuromuscular illness, and takes a phenomenonological and philosophical standpoint. Method. The article is based upon ethnographical observations made in three settings: assistance departments set up by an association, a wheelchair test centre and a rehabilitation centre. Results and discussion. The experience of pain has been described as a rupture of a persons relationship with the outside world leading to a loss in capacity. Rehabilitation enables this link to be rebuilt by focusing on the body and thus changing the way in which the person feels his/her body. Conclusions. This analysis highlights the importance of how pain is experienced and how it is taken into account in rehabilitation practices, whilst at the same time showing how rehabilitation changes this experience.

Keywords: Pain, phenomenology, rehabilitation practice, body, embodiment

Introduction Disabled people and rehabilitation experts have to confront pain on a daily basis, either because pain is the reason for the consultation, or because certain aspects of rehabilitation cause pain. When one examines the question of pain, various aspects are open to analysis. Pain is a physiological phenomenon, the mechanisms of which can be studied. The purpose of pain sciences is to understand the etiology and conditions in which pain appears [1] and to develop treatments [2 4]. Yet pain is not only physiological (furthermore, we can notice that the explanation of pain as a physiological phenomenon is one representation amongst others of pain, the origin of which is Cartesian philosophy); it is also a social and cultural phenomenon. The way in which an individual feels and reacts to pain varies in accordance with the social and cultural milieu to which he/she belongs. Both now

and historically, there is great cultural variation in reactions to and interpretations of pain. Beecher [5], a doctor by trade, observed soldiers wounded on the eld of battle during the Second World War, and was one of the rst to demonstrate the importance of social and cultural dimensions in the perceptions of and reactions to pain. He noticed that soldiers, even when seriously wounded, hardly ever complained about the pain. He concluded that ones perception of pain depends on the situation and on the signicance that one attaches to it. For a soldier who is used to ghting and to seeing his comrades injured or killed, being wounded takes on a positive signicance that of duty done, that of remaining alive, that of soon being able to go back home. A soldier thus has a high tolerance to pain. On the other hand, a civilian in hospital is less resistant to pain, as for him/her pain represents a fundamental change and a threat to everyday life. These initial works were swiftly followed by others, which

Correspondence: Myriam Winance, CERMES, Site CNRS, 7 Rue Guy Mo quet, 94801 Villejuif Cedex, France. Tel: 33 1 4958 3584/33 3 8738 9826. Fax: 33 1 4958 3438. E-mail: myriam.winance@worldonline.fr or winance@vjf.cnrs.fr ISSN 0963-8288 print/ISSN 1464-5165 online 2006 Informa UK Ltd. DOI: 10.1080/09638280500531800

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M. Winance over a 9-day period in this centre. The two last settings were not intended to people suffering from one specic impairement, but were welcoming disabled people whose disability had various causes (disease, accident, congenital impairment, etc.). Concerning deontology, approval for the research was obtained from the person in charge of each of the settings. Furthermore, the aims and methods of my research were explained to the patients and the families and their consent to my presence and observations was asked to them by the professionnal prior to any visit or consultation. My observations rst took the form of in situ notes which were later retranscribed and completed. They were then analysed using an inductive qualitative method. The reason for making eldwork in three different settings was to meet disabled people who were at different steps of their trajectory. Disability induces a trajectory (from entering the disability diagnostic, acknowledgment to coping and living with the disability, etc. [18]) lasting over many years. And my aim was, as I said, to analyse the dual experience of disabled people: this of a body transformed rst through disability and second through rehabilitation practices. Furthermore, for my study, I selected two different populations from those three eldworks. First I chose to focus on the experience of disabled people whose disability results from neuromuscular diseases [19]. Neuromuscular illnesses are degenerative illnesses, mostly of genetic origin, which lead to a loss of functional capacities, and, sometimes, to the vital functions being affected. They appear at different ages and are to a greater or lesser extent incapacitating. In the case of neuromuscular illnesses, disability appears as a lengthy, a slow process. What disability means for the person in terms of lived experience, the way disability modied the daily experience of the person, is then made more visible. Second I compare this population with disabled people whose disability results from road trafc accident. In this case, disability appears as a sudden event, as a biographical rupture. The lost of capacities which was progressive for the person touched by neuromuscular diseases is, in their case, concentrated. As a result, the person very quickly engages him/herself into rehabilitation practices. The way to cope with disability and the way to re-build life is then rendered more visible. To compare the experience of those two populations has led me to induce the two main categories that I use for analysing the pain experience: the one of retraction and the one of extension. The experience of pain appeared as a movement of retraction which causes the loss of the persons capacity to make links. Through re-education practices, the opposite movement, of extension, is made possible. Those categories were induced from the many cases I have observed and

highlighted either the inuence of social context [6], or the inuence of culture [7 9], on the way in which people perceive and react to pain. The inuence of different variables was studied: age, class, ethnic origin and gender [10,11]. Some works concentrate more specically on the recognition and treatment of pain in medical practice [12]. Whilst pain is a physiological, social and cultural phenomenon [13 15], it is also an experience which changes a person, affecting the body and the way one feels about it, and modifying ones relationships with other people [16,17]. Indeed, for someone in good health, the daily experience of ones body is in fact that of an absent body. All day long one acts, moves, works, meets other people, talks to them thanks to ones body, but without being aware of it. On the other hand, if one wakes up in the morning with a raging toothache, the day will be a terrible one. One will have trouble eating and working; meeting other people will be a real trial, etc. We have all had this experience it is very hard to concentrate when one has a toothache! Pain prevents us from acting . . . it paralyses us, in a very real sense. In the life of disabled people, pain becomes a daily experience. The purpose of this article is to focus on this experience in order to understand its meaning and its consequences for the person. I will analyse how pain modies the way the person feels him/ herself, the way he/she is engaged into action and into the world and the way he/she copes with pain. In order to achieve this, I will describe the dual aspect of these peoples experience: a body transformed through disability, but also by rehabilitation practices (and by the interaction with technical aids). Pain seems to arise, to be linked to the lived experience of disability, and to be coped with through the rehabilitation practices. Method My study is based upon ethnographic observations made in three different settings. Firstly, I observed visits to families made by two regional aid and information services (SRAI) set up by the French Myopathy Association. This is an association of families with members suffering from a neuromuscular illness, which was founded in 1958. The services it has settled are not healthcare services; but they provide families whose one of the members is suffering from neuromuscular illness, with information and support for all questions relating to the illness. I observed 25 visits during this eldwork. Secondly, I spent 2 weeks in a rehabilitation and reeducation centre where I observed physiotherapists, occupational therapists and doctors at work. Finally I made a eldwork in a specialist centre devoided to wheelchair testing. I watched 34 wheelchair tests

Pain, disability and rehabilitation practices validated through the comparison of those cases. The cases presented in this paper might be considered as typical illustrations of the theoretical categories. In the remainder of the article, I start by developing the phenomenonological analysis of pain, and then, using this as a theoretical frame, I focus on the experiences of disabled people. I analyse this experience in four steps. First, I show that pain forces the person to concentrate on his/her painful body and then causes a break in the relationship he/she has with the world and with other people. Second, I show that in the case of disability, pain becomes a collective experience. Third, I analyse rehabilitation practices and show how those practices, in focusing on the painful body transforms this into my body. Finally, I describe how these practices, doing this, might help the person to recreate relationship with the world and with others. Theoretical frame: The phenomenonological analysis of pain From a theoretical point of view, I will base myself upon works carried out by authors in a phenomenonological perspective [20 22]. These authors analyse the experience of pain as a transformation of the being in the world: they put the accent on the relationship between body and world. For this, they use Merleau-Pontys notion of embodiment [23,24], according to which the body is subject to perception, and is consequently our access to the world. This notion allows to analyse the various dimensions of the experience of our body. On the one hand, the human being perceives and acts through and thanks to her/his body; in this sense, the body is ecstatic [21], that means entirely turned towards the world. On the other hand, the body is open to the world to the extent that it is not itself perceived: the body withdraws to give way to the world. It is the recessive body [21]. This analysis of the body as embodiment has been used for analysing pain [20 22]. Pain constitutes a modication of the experience of the body as ecstatic and recessive; through pain, the body suddenly rises up and occupies all our consciousness. In this paper, I will more precisely use the work of Leder [21] and the one of Scarry [22]. Leder described the modication of embodied self through the experience of pain by using four ideas: affective call, intentional disruption, spatiotemporal constriction and dys-appearance. He develops these ideas around a single example; that of a tennis player who, in the middle of a game, suddenly feels an intense chest pain. Such pain is an affective call, as it is a sensation that attracts and focuses the players attention and forces him to

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concentrate on it. If the pain is too intense, the player will have to stop playing. With an affective call, pain provokes an intentional rupture: as long as I am not in pain, I am turned towards the world, I act through my body, but without perceiving it; as soon as I am in pain, I shut myself off from the world and concentrate on the pain. Pain causes a break in my relationship with the world or with other people. It forces me to interrupt my projects and leads to what Leder calls a spatiotemporal constriction. Instead of stretching myself out through space and time, I concentrate on the here (pain reduces my ability to move and my capacity to perceive the world) and now (pain prevents one from looking into the past or future; when a tennis player is in pain, he/she has trouble planning his/her next shots) of what is hurting me: my body, or a part of my body, becomes that which exlusively concerns me. Through pain, my consciousness becomes aware of my body, but in a particular way; I see it as a thing that is unknown to me. Hence the idea that pain causes alienation. The body and the self are separated; instead of being my body, I have a body which is hurting me. As Leder explains, the rupture is internal to the body (to the embodied self) because the pain causes separation between a body-subject (which perceives) and a body-object (which is perceived). The self that takes note of the body remains a moment of the organism, an embodied self. As I look down on a paralyzed limb I may be struck by the alien nature of embodiment. But I still use my eyes in looking down, my nervous system in thought, my other limbs in compensation for the paralyzed one. Gazing upon the body-object is a body-subject, though the physicality of the latter may remain tacit [25]. The disappearance mode that characterised the body in good health is replaced by the dys-appearance mode. The body was absent, it becomes present but in a dys-functional way.

Paralysed by pain: Losing the capacity to make links Results In the case of neuromuscular illnesses, dys-appearance becomes a persons natural way of being. The illness affects the persons body, deforms her/his body which is gradually losing its functional capacities. It can no longer remain straight, it is becoming weak and bent. The person can no longer move his/her arms or legs, can no longer move objects. The muscles become stiff and the person loses all suppleness and muscular strength. Muscular deformation causes pain. Shortened muscles keep the arms and legs in certain positions and any attempt to extend them is painful. The vital functions, such

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M. Winance Illness is simultaneously changing Mr Georges body and his world. The worse the illness gets, the more his world becomes conned to his body, in the sense that it is centered on the survival of his body. Mr Georges used to work, he played cards with his friends, but now everything is becoming impossible. To qualify this process of simultaneous transformation of a persons body and world, I use a medical term, that of retraction. In the medical world, this word means the pathological shortening of an organ or tissue. More commonly, this word covers both the notion of retreat and that of withdrawal or huddling up. Pain causes a person to make a movement of retraction, which is simultaneously a huddling up of the body and a withdrawal from the world. Discussion In her works on torture, Scarry [22] analysed this joint movement of reduction of the world and the body through pain, by making a link between pain and language. She starts with two observations: rstly, that of the difculty a person has in expressing his/her pain, and secondly the opposition between the certainty of the pain for the person experiencing it and the uncertainty for the person listening to the one who is in pain. Pain, she says, cannot be objectivised or seized in words, for pain is a pure intentional state, without purpose, or, more accurately, a state of pure passiveness (as an intentional state is only intentional through the targeted object). Pain deconstructs the subjects world and encloses it within his/her body, cutting off any possible link between a subject and an object, and preventing the subject from any expansion within the world. Pain is destructive, because it has the power to de-objectivise; it destroys all objects and produces a pure subject, who is reduced to the state of feeler, patient or sufferer. This brief reminder of Scarrys analysis explains why the subjects withdrawal is a retreat from the world. It is because illness, through pain, affects a persons capacity to make links and be linked; it affects a persons mobility, his/her capacity to move and be moved. In the conversation with SRAI, the question of mobility constantly arises: Mrs Georges talks about Mr Georges work, of her husbands desire to go out, of how he used to be so lively. Illness prevents people from moving, it makes movement difcult. And illnesss destruction of mobility is two-fold. Not only do Mr and Mrs Georges no longer (or hardly ever) go into the outside world, but the outside world no longer comes to them. Mr Georges used to be very lively: he used to play cards and pe tanque. Now, Mr Georges lies on the sofa all day; he watches television and he is alone. Its all very well having friends, but no-one comes to see him.

as breathing, are also affected. The body becomes a painful and rigid materiality, a thing which is central to the concerns of a collective that is organised to ght disease and manage illness trajectory [26]. Through pain, the illness causes the person to withdraw into his/her body. And this withdrawal, as described by Leder, is also a withdrawal from the world. For the person concerned, the bodys transformation into a rigid materiality is a reduction of his/her world. This dual movement is illustrated in the following extract. It is taken from SRAIs visit to a couple; the husband has Steinerts dystrophy, one of the many neuromuscular diseases:
SRAI director: [. . .] Could you tell us about your experience? Mr Georges: (his voice is very dry and halting) Well . . . the illness really got going when I was 30. Before then it was alright. Mrs Georges: Yes, he started having heart problems. I could see he was walking slowly. [. . .] My husband was night watchman and it got harder and harder for him; it was hard for him to do his rounds, because he found it hard to walk. [. . .] Mr Georges: [. . .] And then theres my eyes as well, I had an operation for cataracts. But things have got worse since then. I have trouble seeing. Its got worse. Mrs Georges: Yes . . . well . . . its everything . . . nothings going right. Everything has got worse . . . when he needs something, he asks me, because he cant do it himself . . . I do it for him. And when Im not there . . . well, he cant do anything. He needs me all the time. [. . .] Mr Georges: I lie here all day . . . when my wife goes out . . . I watch TV and I cant do anything. Mrs Georges: He cant do anything, when I go out (she points to the bottle of water on the table) I open the bottle for him, I put the straw and the glass on the table and he manages to drink if he gets thirsty. Because he cant lift the glass to his mouth . . . he cant hold anything . . . his hands are too stiff (Mr Georges shows his hands and explains he can no longer bend his ngers). Director: Your hands are stiff, because you can no longer contract the muscles. Mrs Georges: His muscles have melted away. He has no muscles any more. You cant see that at the moment, because he is dressed, but when I wash him. [. . .] My husband would like to go out, but you know, the way he is its not possible. We just received an invitation . . . you sent us an invitation to a dinner on a barge. Wed like to go . . . but how can we? Hes all alone and hed like to go out. [. . .] My husband, he used to be very lively, he played pe tanque, cards, but now hes stuck. Because its all very well having friends, but no-one comes to see him. And he cant get out any more, he cant move around any more. (Visit to the home of Mr and Mrs Georges, SRAI green, December 1998)

Pain, disability and rehabilitation practices And he cant get out any more, he cant move around any more (Mrs Georges). Through pain, illness causes a loss of functional movement, but also and above all of emotional movement. On the one hand the person cannot move in the world, and on the other hand the world no longer moves (no longer mobilises) the person. Put another way, the person no longer emotionally affects the world and the world no longer has an emotional effect on the person. As Despret [27] has shown, an emotionally moved body is a body that the world has put into movement. The notion of retraction, close to that of Leders spatiotemporal constriction, stresses this change in mobility. In medicine, when a muscle retracts it loses its capacity to move. In Mr Georges case, retraction, withdrawal into his body and the reduction of the world, is a loss of mobility: all of Mr Georges links with other humans and nonhumans are progressively undone. Such links become rarer and rarer. The body in pain is reduced to itself, it becomes a motionless body, unable to move or be moved. The body in pain, formed and retracted, has become a rigid materiality; rigid materiality because it is unable to stretch and create links with the world around it. Yet it is such links that enable it to exist [28]. Through the links they weave with the world, subjects acquire their abilities to act. By causing a person to withdraw from his/her body and world, pain causes these links to be broken and the person loses his/her capacities. The person is unable to act upon the world, to create any links. What that person is, and can do, changes. The person is in-capacitated. This analysis leads to a particular conception of the person: he/she is dened as a set of specic links between body and world, links which make her/his body and her/his world. In the case of neuromuscular illnesses, the loss of the capacity to make links is especially visible, due to the specicity of this type of illness; furthermore, it is gradual. In the case of people who become disabled due to a road accident, the loss is sudden, and its extent will depend upon the gravity of the accident. The accident constitutes a rupture of all or part of the links which made up the person, which dened his/her identity and capacities.

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that a collective is formed to ght the illness, that this collective contains a variety of actors who must coordinate their actions, and that it involves constant negotiation. Callon and Rabeharisoa [29] have shown that the sufferers body plays the role of political structuring for the collective. This body, what it is and will be, what it can or cannot do, is at the heart of discussions about the extension of the collective, its composition and the nature of the relationships that unite its members. The body and the collective dene each other. Working from these studies, I intend to highlight the collective aspect of pain. According to Scarry [22], pain is individual and may not be shared. Pain even creates a boundary between the person who feels the pain and is certain of it, and the other people who listen to that person and are uncertain about the pain. Pain is subjective in the truest sense; it is specic and proper to the person in question. However, the analysis of my observations has shown that the pain could become shared and collective. This is the case in the example of Mr and Mrs Georges. At several points during the conversation, Mrs Georges talks about her anxiety and suffering with regard to her husbands illness.
Mr Georges: [. . .] because my wife looks after me, but its really hard work looking after me. Its exhausting. Mrs Georges: Yes, I look after him, but for example, when I sleep, I sleep badly . . . because Im worried, I listen to his breathing, Im afraid. So I wake up at the slightest noise. I know theres nothing one can do about it, but its difcult to cope with everything. (Visit to the home of Mr and Mrs Georges, SRAI green, December 1998)

In this extract, we see that the disease of Mr Georges also transforms the daily experience of his spouse. Although the pain is subjective, felt by the person in his/her body, the disease also leads to a collective experience that we have to describe and to understand. Discussion Through disability, pain becomes both a subjective and a collective experience. The pain felt by Mr Georges is not the same pain as that felt by Mrs Georges; their pains are specic. Mr Georges is in pain in his body because his muscles are retracting and because he is out of breath . . . Mrs Georges is in pain in her body because she is tired from looking after Mr Georges, because she sleeps badly and is worried. For Mr Georges, the pain comes directly from the illness. For Mrs Georges, the pain comes from the link between her and Mr Georges, created by the illness. This link is one of strong and reciprocal dependency; it is through this link that the pain becomes collective and shared, whilst

A pain that becomes a collective pain Results Illness, through pain, causes a movement of retraction and acts on the links which dene the person. In acting on these links, the illness also affects all of the people linked to the sufferer, in as much as the ill body becomes a thing which is at the centre of their concerns. Strauss [26] insists upon the idea

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M. Winance interpret (and to criticise) re-education practices exclusively in terms of normalisation. Its objective would mainly be to enable the person to nd or preserve a situation that is as normal as possible, i.e., similar to that of an able-bodied person. To achieve this, re-education aims to restore the persons normal functional capacities. This description would seem to reect professional re-education practices. In the re-education centre where I made my ethnographic observations, the patients and professionals were busy all day long with physical activities, i.e., activities designed to improve patients physical capacities and make their bodies functional once more, for an everyday life that is as normal as possible. Physiotherapy and balneotherapy (physiotherapy in hot water) sessions help make muscles stronger or more supple, help people to walk again or to carry weight without damaging their back. Then come ergotherapy sessions, to assess where the patient has difculties in everyday life, and to try to resolve these difculties using technical aids and by teaching the movements that are needed. Then there might also be prosthesis tting sessions, speech therapy sessions, sports, etc. Patients see their reeducation doctors on a regular basis to discuss progress, set objectives and plan activities. I would like to show that this interpretation is simplistic. Normalisation is but one dimension of rehabilitation practices (among others, because disabled patients ask for being able to live normally, understood as like able-bodied). If the body is omnipresent throughout the above activities, it is also due to pain. If the professionals and patients are concentrating on the body, it is perhaps either independently of their will or because pain guides their will because the pain forces them to do so. Concentrating on ones body, taking exercise, toning muscles, are all responses to the call of pain. The body on which professionals and patients are concentrating is a body in pain. Yet as I have stated above, the body in pain results from an internal rupture between a body-subject and an body-object, and from an external rupture between the self and the world. Re-education practices can be examined as a means to re-establish links between the patient and the world, between the patient and other persons. This involves taking the internal and external ruptures into account, which in turn involves working on the body in order to reappropriate it. This process of re-appropriating the body, that I will analyse using the notion of embodiment, has been analysed by some authors in terms of changing the body image [33]. During the re-education sessions, the person concentrates on his/her body in order to re-appropriate it and make it disappear. Pain makes the body a

nevertheless remaining specic to each person. Through this dependency and this shared pain, the illness creates a collective body: He cant do anything without me, says Mrs Georges. One body compensates for the other. Furthermore, through this strong dependency link, the retraction movement affects both people. The illness puts the focus on the ill body of Mr Georges, which is a source of pain for Mrs Georges. For Mrs Georges, this withdrawal into the body of Mr Georges constitutes a reduction of her world and a loss of mobility. Her capacity to move and to create links is just as reduced as that of Mr Georges, but in a different way. Whilst Mr Georges can no longer go shing or play cards, it gradually becomes impossible for Mrs Georges to read, to listen to music, to make the most of her free time. When Mrs Georges goes out, Mr Georges cannot do anything; on the other hand, when Mrs Georges is at home, she cannot do anything. Indeed, even when she is away from home, Mrs Georges is anxious, constantly thinking about her husband, about the ill body of her husband. It has become difcult for her to expand into the world.

Concentrating on ones bodily pain in order to transform the experience of the body Results Pain causes a collective movement of retraction. But pain also sends out signals. It sends out signals when something is wrong; it signals the retraction, the loss of link-making and of capacities. It constitutes an emotional and teleological call [21], because it focuses the persons attention whilst at the same time setting an objective for his/her willpower to be freed from pain. Pain creates want, it builds intentionality. This orientation involves two points in time: a hermeneutic moment (a search for a reason behind the pain) and a pragmatic moment (action to remove the pain) upon which I focus in this article. For both people suffering from neuromuscular illness and people who became disabled due to a road accident, there is no cure; there are merely palliative treatments. One cannot cure the illness, one can simply attenuate its symptoms and its consequences through physiotherapy, orthopaedics, occupational therapy, technical aids, etc., in other words using the full range of re-education practices. All these practices focus on the body, and in this case, the body in question appears to be essentially characterised by its functionalities and dysfunctionalities, a body that we measure, assess, manipulate . . . This has led many authors [30 32] to

Pain, disability and rehabilitation practices foreign thing, an obstacle to any action. When a person does different exercises, makes different movements and tries to feel his/her body, the latter can once again gradually become his/hers, the body that was no longer felt, the body that disappears (at least momentarily, as the disabled person is in a situation where moments of disappearance follow on from moments of dys-appearance). It can once again become a body which allows and copes with action. Re-education is not only functional, it also helps one to learn to feel ones body. This work on feeling involves taking into account the objectivation of the body caused by pain. The purpose of the exercise is to turn the feeling of pain and rupture into a different feeling, a feeling of linking. This is what appears in the following extract of my eldnotes.
On the rst day of my stay at the re-education centre, I attended Dr Ramons consultations (Dr Ramon works in re-education and rehabilitation). It is the turn of a young woman, Martine, who has been a paraplegic since her road accident. She comes with her husband and children. She now lives at home, but continues to have her consultations at the re-education centre. Her physiotherapist also attends the consultation. For some time now, they have been working on learning to walk again. In order to be able to walk, Martine has to wear articulated splints on her knees and ankles, to give her support up to her pelvis. She then stands between parallel bars on which she leans for support. The doctor asks her to show him how she walks, so that he can judge her progress. Martine stands up between the bars, concentrating in order to remain upright. She takes her weight with her arms and takes a rst step; she slowly moves her two legs forwards, placing them in front of her, then moves her hands on the bars. Martine has lost the use of her legs, it is impossible for her to put one leg in front of the other. Walking involves taking her weight with her arms, and swinging the body forwards. Before each movement she thinks carefully and concentrates on what she must do. The physiotherapist explains to me that the problem is that she has no feeling below the pelvis; she can no longer feel her legs, they are a dead weight. She must replace feeling with thinking in order to keep her balance and make a movement. Walking is a movement in four stages that uses the entire body; when we walk, we move a leg forward, then an arm, then the other leg and nally the other arm. The purpose of the exercise is not really to learn to walk again, as it is very unlikely that Martine will ever use this method to get around; it will always be far more laborious than using a wheelchair, and will only be useful for certain transfers or short distances. Yet this exercise allows Martine to use all her body, to be aware of her entire body in movement (even if she has to think about it), to regain condence and realise that certain things remain possible. At the end of the consultation, Martine tells me: I know I will never walk again, and that the wheelchair is more practical, but with these exercises I can have new

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sensations. (Re-education centre, consultation, 23 June 1999)

Discussion At rst sight, teaching a paraplegic person to walk again might seem typical of the normalisation process (interpreted as an alignment with the norm of an able-bodied person). But that is not what this example is about. The aim of learning to walk again is not to normalise a body by re-establishing a functionality that is considered to be normal; indeed, the physiotherapist himself is careful when he talks about walking. The purpose of teaching Martine to walk again is to allow her to feel her legs and her body in a different way. As she cannot feel them directly (like we can), she has to learn to feel them intellectually; through this new way of feeling, she will discover another body which is not the paraplegic body that she does not feel to be hers. In her accident, Martine lost her legs; they have become a dead weight, they have become legs. With this exercise, Martine is learning to feel her legs; she is learning that once again, albeit differently, they can be her body. Re-education works on the bodys functionalities and capacities in order to encourage other feelings and capacities to appear, to encourage another body, that is once again mine, to appear. It works on the relationship between the body-object and the body-subject in order to change it and to attenuate the pain and weight of the body. Through this exercise, the feeling of rupture and alienation with regard to a body that has become heavy and stiff is turned into a feeling of linking.

Concentrating on ones bodily pain in order to regain the capacity to make links Results By working on peoples feelings, on the way they perceive their body, professionals are also looking to change their world. A re-education doctor explained that if he used the kind of exercises described above, it was certainly not because he wanted at all costs to get people back on their feet; it was because people asked for it and because only by confronting their own bodies would they learn that there were solutions other than walking. Changing from walking to another form of movement is not easy, and requires considerable adjustment; it is this adjustment that re-education professionals aim to facilitate by working on a persons body. The aim of the exercise is not to normalise (or more precisely, it is not exclusively or mainly to normalise), i.e., to align with the norm of an able-bodied person, but

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M. Winance
Ergotherapist: Ok . . . leave it like that, well have another look later on. (Wheelchair test centre, Ste phane, May 1999)

to enable a difference and a new action norm to emerge. The idea is to re-establish a persons capacity to make links, and thus open up new opportunities and allow the person to expand. This simultaneous work on the persons body and world is especially visible when the person has to use a prosthesis or technical aid during a wheelchair test for example. When a person sits in a wheelchair for the rst time, he/she feels ill at ease; he/she does not know how to use it, the wheelchair is not part of him/her, it is almost painful. Appending a prothesis or a technical aid such as a wheelchair (which is very close to the body) rst creates a feeling of unease and a distance between subject-body and object-body. But gradually, the wheelchair becomes what shapes the body over a long period of adjustment [34,35] that begins with the wheelchair test. This takes the form of a joint negotiation between all actors: the person in question, the healthcare professionals, friends and family and the wheelchair. Ste phane is 30 years old, and is tetraplegic following a car accident; for the moment he uses an electric wheelchair on loan from the hospital, but he will have to obtain his own chair. To this end, he tests a wheelchair at a test centre in the presence of an equipment retailer, the manager of the centre, an ergotherapist, a physiotherapist, a technician and his girlfriend. Ste phane is almost totally paralysed; all he can move, and with difculty, are his right arm and hand. Furthermore, he is in a lot of pain and is very sensitive to pain. Various constraints need to be taken into account when choosing the wheelchair: the controls must be very sensitive, the seat must be very comfortable and the chair must not be too bulky. Ste phane has just been transferred into a comfortable electric wheelchair:
The manager and the retailer are trying to adjust the height of the arm rests; the retailer raises the right-hand rest. The manager holds Ste phanes arm. Manager (to Ste phane): is that the right height for the arm rests? Ste phane: I dont know . . . yes . . . maybe . . . I dont know. Be ne dicte (the ergotherapist)? What do you think? Take a look? Ergotherapist: (she moves opposite him, crouches down and looks at the arm rests in relation to the level of his arms: Yes . . . hum . . . pretend you are driving? (Ste phane makes a face and pretends he is driving) . . . yes . . . a little bit higher would be good . . . its hard to say, because the other arm rest isnt at the right height. Retailer (he is behind the wheelchair and looking at the arm rest): As it is at the moment, its almost horizontal. Ergotherapist: Its a bit too far forward. No? Retailer: Yes, a touch too far forward (the retailer raises the arm rest a bit).

During the test, the actors exchange their impressions and perceptions of the body that is emerging. The ergotherapist, the retailer and the manager move around Ste phane in his wheelchair, looking at him; on several occasions they touch Ste phane to feel how he is sitting. The ergotherapist compares the characteristics of the wheelchair and Ste phanes position with those of his usual wheelchair. Ste phane tells everyone the positions that are the least painful for him. The others exchange their impressions in order to try to assess whether or not Ste phane feels comfortable in the wheelchair. Through this exchange of perceptions the actors are testing which body will emerge. By working on the perceived body (body-object), they try to make a bodysubject emerge. This exchange of perceptions gradually changes the manner in which Ste phane is in his wheelchair: the manager and the retailer adjust the wheelchair, and then Ste phanes position. The collective work on the body is the adjustment process: the wheelchair must adapt to Ste phane and Ste phane must adapt to the wheelchair, he must feel it. This process of adjustment is both material and emotional. A collective materiality that of Ste phane in his wheelchair gradually emerges, at the same time as the feelings. Ste phane is learning to feel his wheelchair and to perceive through it. Through his wheelchair his perceptions and his mobility are changed.
Ste phanes girlfriend: Its good that the wheelchair goes up. For the person washing him and taking care of him, its a good thing. Retailer: Yes, and the advantage for him is that it increases visibility. Ste phanes girlfriend: Yes . . . of course. Retailer: He will have a broader eld of vision. Ste phanes girlfriend: . . . ah yes! He is always leaning to look out of the window; now hell be able to bring himself up to the height of the window. . . (Wheelchair test centre, Ste phane, May 1999)

Discussion The work on adjustment changes the persons body, but also his world. By working on the links between the person and his wheelchair, the actors bring about a disappearing body (for Ste phane); they work on the link between person and world. Through Ste phanes confrontation with his wheelchair, the actors try to change the constraints that weigh upon his world. Through this work on adjustment, the wheelchair is no longer something that upsets and hurts, but something that supports and builds

Pain, disability and rehabilitation practices (or shapes) Ste phanes body, thus enabling him to act on the world, to be open to the world this analysis would need to be pursued, with a detailed examination of the process whereby a person adapts to his/her environment; such a process supposes a transformation of the person, particularly of his/ her self image, but also a transformation of the environment [36]. Of course, the work on adjustment really is work, both difcult and tiring, and the outcome is never certain or denitive. Furthermore, it is always an ambivalent process; through the denition of certain links between himself, the wheelchair and his environment, Ste phane acquires both capacities and incapacities. In choosing this wheelchair, with its elevator seat, he will be able to look out of the window, but it is by no means certain that he will be able to take the wheelchair everywhere with him, because the elevator jack makes it very cumbersome, and to carry it one needs a specially tted vehicle such as a van or a people carrier, which are large and expensive. Yet this work opens up new opportunities and makes transformation possible. By working on the relationship and differences between the body-subject and the body-object, there is a transformation of the person and of his/her body and world. In re-education practices, the actors work on the links which dene that person. The aim of these practices is to make the persons extension possible. The person regains his/her capacity to make links. His/her body and world are transformed, and he/she acquires both capacities and incapacities. Conclusion In this article I have examined the experience of pain by looking at the case of people who became disabled through neuromuscular disease or a road accident. I have shown that pain causes a movement of retraction, i.e., of withdrawal into the body with simultaneous reduction of the persons world. Pain causes a person to lose the capacity to make links, as he/she is concentrating on the body that is hurting him/her. But pain also has the role of sending signals. Re-education practices take the existing rupture as the starting point, in embodied self, between bodysubject and body-object. They work on the distance between the two by using exercises that help the person to learn to feel his/her body. Through this work on adjustment, the persons body and world are transformed. He/she regains mobility and the capacity to make links; this is the movement of extension. This description of the movement of retraction and extension leads me to propose a conception of a person which stresses the relationships between the body and the world. What a person is his/her

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capacities and qualities is dened through these relationships. A person is not rst and foremost a closed and separate entity, but rather an open entity with relationships. The disability experience and the re-education practices appear to be moments when what a person is, is problematised and dened. Indeed, the links that make a person are both tested and dened; the person is simultaneously open and closed. The process of adjustment involves working on the relationships that make that person. Through this work, a person acquires capacities to act, but incapacities too. The notion of habilitation denotes the process through which a person acquires the capacities and incapacities to act through a gradual transformation of the links that make him/her. This analysis should encourage professionals in paying attention to the pain experience, to its meaning for the person and his/her family (in terms of a transformation of the relations between body and world) and to the way they might help rebuilding those relations in order to transform the lived experience of the person.

Acknowledgement The author would like to thank Christopher Hinton for his help in translation.

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