Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury

Sociology of Health & Illness Vol. 15 No. 2 1993 ISSN 0141-9889 Reshaping of self: a pendular reconstruction of self and identity among adults with traumatic spinal cord injury Karen K. Yoshida (University of Toronto) Abstract This paper describes the impact of chronic illness on self and identity among 35 adults with traumatic spinal cord injury (paraplegic), living in the community. The reconstruction of self and identity post spinal cord injury is conceptualised as a pendulum. The pendulum of self represents a dynamic model of identity reconstruction. The pendulum suggests that identity reconstruction is a process that swings back and forth like a pendulum between the nondisabled and disabled aspects of self. The pendulum depicts five predominant identity views (outcomes). These are: 1) the former self; 2) the supernormal identity; 3) the disabled identity as total self; 4) the disabled identity as an aspect of the total self; and 5) the middle self. These identity views are influenced by five experiences (processes). These are: 1) loss; 2) sustainment; 3) integration; 4) continuity and 5) development of the self. It is suggested that frameworks of identity reconstruction or reconstitution which include both process and outcome components may elucidate more clearly the impact of chronic illness on self and identity. In addition, this pendulum model of identity reconstruction is an alternative approach to traditional sociological conceptions of identity reconstruction. Introduction This paper examines the consequences of chronic illness and disability for self and identity. The importance of the life reconstruction process makes understanding the impact of chronic illness on self and identity a fundamental concern (Conrad 1987: 11-12). Both Mead (1934) and Blumer (1969) have identified the centrality of the self as the medium through which people interpret situations and take action. O Basil BlackweU Ltd/Editorial Board 1993. Published by Blackwell Publisheni, 108 Cowley Road, Oxford 0 X 4 UF, UK and 238 Main Street, Cambridge, MA 02142, USA. 218 Karen K. Yoshida A number of authors have examined and conceptualised the self generally and in relationship to chronic illness and disability. Both Gofftnan (1959; 1961) and Strauss (1969) have illustrated the active nature of individuals in controlling the definition of self and the social situation. Goffman has extended this analysis to individuals who are 'stigmatised' and has discussed the negotiation between individuals' social and personal identities (Goffman 1963: 42-102). Recent work on the reconstmction of self in the illness experience literature can be organised into 'process' and 'outcome' frameworks and constructs. With respect to process, both Bury (1982) and Williams (1984) examined how individtials achieved or attempted to achieve a sense of order of their past biography resulting from the onset of rhetimatoid arthritis. Bury describes this process as a 'biographical dismption' (Bury 1982: 169), while Williams uses the concept of 'narrative reconstmction' (Williams 1984: 177-80) to illustrate how respondents accounted for their arthritis. Corbin and Strauss (1987; 1988) have also examined the 'process' of identity reconstmction among individuals with a variety of chronic conditions. They believe that conceptions of self refer to the individual's personal identity conceming his/her life course or biography. The total self is formed by the integration of various aspects of 'self into a more inclusive whole' (Corbin and Strauss 1987: 264). This conception of self is formed through four types of biographical work; one form of work focussing on identity reconstitution. The specific process of identity reconstitution appears to focus on the continuity of the self prior to the chronic illness or disability and integration of 'new aspects of self (Corbin and Strauss 1987: 272). While this 'process' literature on identity reconstruction describes in a variety of ways the means by which self and identity may be reconstmcted, it lacks specificity regarding what emerges through identity reconstitution. Other authors have attempted to delineate the 'outcomes' of identity reconstitution. Loss of self is a fundamental consequence of chronic illness (Charmaz 1983; Fontana and Smith 1989; Orona 1990: 1254). Fontana and Smith (1989: 43-5) describe ftirther what aspects of selfhood remain after the deteriorating effects of Alzheimer's disease. They believe that socially constructed aspects of self remain, maintained by the actions of others. Charmaz (1987: 284) has illustrated a potential range of outcomes of reconstituted identities for individuals with chronic progressive deteriorating conditions. She argues that individuals aspire to construct preferred personal and social identities. Charmaz conceptualises this striving for self as an identity hierarchy consisting of identity levels. These identity levels are: 1) the supemormal social identity, an identity where extraordinary feats are cotnmonplace in the conventional world; 2) the restored self, a reconstmction of previous identities prior to the illness; 3) a contingent self; which is a potential, but uncertain identity because of the possibility of futtire illness; and 4) the salvaged self, which is retaining O BasU BiackweU Ltd/Editorial Board 1993 Reshaping of self 219 a past identity based upon a valued activity or attribute while becoming physically dependent. Movement through the hierarchy with respect to progressive deteriorating illness often means, 'reducing identity goals and aiming for a lower level in the identity hierarchy' (Charmaz 1987: 285). While there is a substantial literature in this area, there are a number of omissions and assumptions. First, there is an absence of conceptualisation of identity reconstitution that considers both 'process' and 'outcome' components. Frameworks which include both may elucidate more clearly the consequence of chronic illness for self and identity. Related to this concem is that while the sociological literature depicts identity reconstitution as linear and nonlinear processes of change, it is the continued explicit development of nonlinear models of identity reconstniction which will further our understanding of living with disability. This is important as living with chronic illness or disability is a continuous adaptive process (Strauss and Glaser 1975; Gallagher 1976; Anderson and Bury 1988). Current conceptualisations of identity reconstruction also focus either on the self prior to the chronic illness, ie the nondisabled self, or on the disability, the disabled self. There is little explicit work that reveals how the disability 'fits' into the total self. This latter point is not just an academic concem; individuals with disabilities are grappling with how encompassing the disability should be to their individual and collective identities (Hahn 1990; Groch 1990). The purpose of this paper is to describe the emerging self among individuals who have sustained traumatic spinal cord injuries. This analysis takes into consideration the notions of a non-linear transformation of identity, 'process' and 'outcome' elements of identity reconstniction, and how the disability merges with the nondisabled self. This emerging selfhood among individuals post spinal cord injury has been conceptualised here as a pendular reconstruction of self. Post-disability identity reconstnicticKi The concept of self is derived from a symbolic interactionist perspective (Blumer 1969). While the self is seen as a reflexive process and not a stmcture per se, it is an organisation that is sustained by the appraisals of the individual, other individuals and by the shared meanings that arise from social interaction. Similar to Charmaz (1987: 284), it is argued here that people may have more than one identity and that identities are formed through the above processes of self-definition and social interaction. Individuals hold personal and social identities which influence and shape an evolving self (Goffman 1963). The self, then, is 'an emergent structure or organisation as it may shift or change as the person reflexively interprets the identifications and images that self and others confer upon him or her (Charmaz 1987: 284). O BasU BlackweU Ltd/Editorial BoanJ 1993 220 Karen K. Yoshida Pendular shape and identity reconstruction The form of this identity reconstruction among individuals with traumatic spinal cord injuries is best described as a pendular shape. The metaphor of a pendulum has been used to depict the dynamic process of identity reconstruction as revealed by the respondents in this study. The metaphor of a pendulum is used as respondents illustrated through their accounts how they moved back and forth between their nondisabled and disabled aspects of the total self, in speaking about how they reconstructed their lives post injury. The pendular shape of identity reconstruction among individuals with traumatic spinal cord injuries represents an oscillation between conceptually distinct, but empirically overlapping types of identities which encompass nondisabled andJoi disabled aspects of self. Central to the pendular shape is the expression of identity reconstruction as a dual directional process. Using a pendular shape to denote this adaptation to living with a disability is in contrast to current sociological concepts of trajectory (Glaser and Strauss 1964) and career (Hughes 1958) which have been used to describe the process of living with chronic illness and disability. The sociological concept of trajectory was first articulated by Glaser and Strauss (1964) in the context of research on dying in hospitals. The term dying trajectory reflected the perceived course of dying from the patient's perspective. A dying trajectory was a concept denoting a unidirectional passage through time and events. The concept of career (Hughes 1958) has also been used to depict change. The sociological concept of career again denotes passage through time and events, with a uni-directional aspect to the concept. This directional element is evidenced by the predominant usage of the term to illustrate sequential stages or phases of various forms of work (Hughes 1958: 8-22). Recently, it has been suggested that the concept of career may be too rigid a concept to apply to the long term adaptation of chronic illness and disability (Conrad 1987: 9-10). Conrad (1987) advocates the use of the concept of trajectory by arguing that it: . . . may be more appropriate to studies in the experience of illness since it encompasses process and change but does not assume linearity or orderliness (Conrad 1987: 10). Much sociological research however, has used the concept of career to illustrate process and change in various life domains with respect to disability (Goffman 1961: 32; Locker and Kaufert 1988: 26-7; Gerhardt 1990: 1211-12). In their examination of the impact of changing medical technology on post-polio patients' daily lives. Locker and Kaufert (1988) used the concept of career not only as a passage through time, but as a multidimensional concept. They suggest in the lives of their respondents, O BasU Blackweil Ltd/Editorial Board 1993 Reshaping of self 221 technology influences individuals' biophysical functional and psychosocial careers. The concept of trajectory has also evolved in a manner that suggests it may be ixsed to express the idea of nonlinearity. Strauss and Glaser (1975) have applied the concept of trajectory to chronic illness. The notion of illness trajectory suggests the idea of a nonlinear process. For example, individuals with rheumatoid arthritis or multiple sclerosis will have a nonlinear trajectory punctuated by periods of exacerbation (flare-ups) and remission which are characteristic of these chronic conditions. The notion of illness trajectory encompasses not only the physiological course of the disease but includes the total organisation of work performed by the individual and others and the impact of that work for the individual and others (Strauss et al 1982). Again, this suggests that the organisation and impact of work in the care of persons with chronic illness represents a passage through time but one with a fluctuating or nonlinear existence for those with chronic illness and caregivers. Therefore, the concept of trajectory may be used to depict both linear and nonlinear processes. In this paper, the process of identity reconstmction conceptualised as a pendulum shares with the concepts of trajectory and career that they are shapes or forms to express living with chronic illness or disability. Identity reconstruction as a pendulum, however, differs from these traditional concepts in that it expresses the idea of dual directionality rather than imidirectionality. This feature of the pendulum concept provides an altemative approach to current conceptualisations of life reconstruction after disability. Methods and data The paper is derived from data collected on 35 adults living in urban centres of Southem Ontario, who sustained a traumatic spinal cord injury resulting in paralysis to the lower limbs and parts of the trunk (paraplegics). The study group is a snowball sample derived from personal contacts and through advertisements in local newspapers and newsletters. These data were collected by in-depth interviews conducted by the author between November 1988 to September 1989. The interviews, semi-structured in nature and tape recorded, focussed on how individuals reconstmcted their lives post injury. Primary areas of concem were reconstruction of labour force participation, community living and the role socio-economic status played in this process. While the issue of identity was not dominant in the formative stages of the research, it became a dominant theme during the early interviews and was subsequently incorporated in an explicit manner for the rest of the interviews. Twenty-eight men and 7 women were interviewed. This four-to-one ratio of men to women reflects the gender distribution of individuals with O Basil BlackweU Ltd/Editorial Board 1993 222 Karen K. Yoshida spinal cord injuries (Trieschmann 1980; 1988, Maddox 1987: 38). The age at injtiry ranged from 8 to 52 years, with an average age of 22 years at onset. The majority of respondents had their lesions at the thoracic level of the spine. The current age of respondents was between 22 to 56 years with a mean current age of 32 years. The ntunber of years living with a spinal cord injury ranged between one to 22 years with a mean of 8.9 years. With respect to employment status at the time of the interview, 27 were working full time, five were unemployed (one on long term disability) and three were enrolled in educational programmes. Marital status at the time of the interview was varied; 15 were single (never married); 12 married/cohabiting; 6 separated/divorced and 2 engaged. All 35 interviews were transcribed from full verbatim responses. Respondents' experiences and accounts were examined from a general symbolic interactionist perspective (Mead 1934, Blumer 1969). A grounded theory method for data analysis was used (Glaser and Strauss 1967, Glaser 1978). In transcribing the interviews 'insight notes' which consisted of ideas, general comments and reactions to the interview data were recorded. This 'memo writing' (Charmaz 1990) assisted in the development of codes and categories of the transcribed text. The Ethnograph Program (Seidel et al 1988) was used to assist in the management of these data. Respondents' accounts are used to illustrate the concepts presented in this paper. Quotations are by respondents who typified the response/concept, but are based upon the dominant themes as mentioned by the majority of participants. Overview of the paidular diape of identity reconstruction A description of the pendular reshaping of self among individuals with traumatic spinal cord injuries follows. First, the overall framework will be described. Second, the key features of this framework: the predominant identity views which represent 'outcomes' of identity reconstmction will be detailed. The 'process' element of the pendultmi are experiences or situations which shape the identity views. These experiences will be briefly discussed. Last, narrative analysis of two respondents will be presented to illustrate the pendular shape of identity reconstruction. The pendulum of self refers to a proposed life course of self and identity after the onset of tratmiatic spinal cord injury (Fig. 1). This model suggests that the emerging self after spinal cord injury swings back and forth like a pendulum between the nondisabled and disabled aspects of self Between these outer positions on the pendulum, individtials may pass through and experience different degrees of the nondisabled and disabled selves called predominant identity views. These predominant identity views reflect that self which is articulated implicitly or explicitly by the O BasU BiackweU Ltd/Editorial Board 1993 Reshaping of self 223 outcomes the former self the supernormal identity the middle self the disabled identity as part of the total self the disabled identity as the total self Fig. 1 The pendular reconstructioti of self: predominant identity views individual as the most important self to express over a period of time and/or within a particular situation. There were five predominant identity views emerging from the interviews: the former self; the supernormal identity; the disabled identity as total self; the disabled identity as an aspect of the total self and the middle self. Generally speaking, movement along the pendulum represents a relatively long term process (months or years). Specifically, the usual pendulum shape of movement was from the former self over to the disabled identity as total self, back to the supernormal identity, then to the disabled identity as an aspect of the total self, then moving to the central of the pendulum, the middle self. Individuals, however, may or may not experience all these identities; or a person could be situated at any one of these identities with relatively little movement to any other identity view(s). If individuals reach the middle self, they still carry the other identity views with them. At this point, movement between the identity views continues to reflect a pendular shape as individuals with spinal cord injuries may oscillate between these identity views depending upon the definition of life situations. Movement along the pendulum was influenced by a number of experiences: loss; sustainment; integration; continuity and development. These experiences shaped the evolving of self of respondents. Thus the model allows for variability in response over time and situationally. O Basil BlackweU Ltdj^itorial Board 1993 224 Karen K. Yoshida Predominant identity views The former self The former self of the individual with a spinal cord injury is based on who the person was prior to the injury. The former self is the basis for identity reconstmction however, the total former self can not be recaptured as even with a spinal cord injury in which the spinal cord itself is not damaged, the experience would likely transform the individual in a significant way. This identity view consists of 'core' and 'peripheral' aspects of the nondisabled self Core aspects of self greatly define the individual. Depending upon the age of the person when s/he is injured, the life experiences up to that point and their perceptions around these experiences, an individual may possess more or less core aspects of self. Peripheral aspects of self are those elements which are non-core elements of self Charmaz's (1987) conception of an 'entrenched self embodies the notion of core or essential aspects of self: These persons hold clear images of their self concepts which they can readily articulate. The entrenched self represents pattems of action, conviction and habits built up over the years. These unchanged pattems had been a source of self respect before illness. After illness, resuming these pattems becomes the person's major objectives. Those who aim for an entrenched self typically know exactly what they wish to do and who they wish to be (Charmaz 1987: 302). What is problematic is that the majority of individuals who sustain traumatic spinal cord injuries are young adults generally between the ages of 18 to 30 years of age (Trieschmann 1988; Maddox 1987: 38). These individuals may or may not have 'core' aspects to self to use as a basis for action after the spinal cord injury. One respondent, Mr NS, in particular, was injured when he was a teenager remarked: Mr NS: You know I guess, being young too, being hurt at a young age, did not help. You know, you don't fully mature. If I was older I think the story would have been different. This particular individual was 16 years old and working at an unskilled trade prior to injury. He spoke about wasting a number of years before getting serious about his life post injury. His 'wasted' years post spinal injury suggests a lack of defined aspects of self upon which to rebuild a valued self The disabled identity as total self The disabled identity as total self is seen by these respondents as mainly a negative identity. It is revealed in primarily two situations: when a respondent treats him/h^r self as disabled by expecting assistance from O Basil Blackweii Ltd/Editorial Board 1993 Reshaping of self 225 others without asking all of the time and/or believing that other people should know what a person with a spinal cord injury can and cannot do. Regarding the first situation, treating oneself as disabled appears to centre around expectations: Mr MK: When I use to go to school, I expected [others to] let me get a table first because I am in a wheelchair. Mr MK also remarked about the second way this identity is revealed using an example of a person going to a restaurant with friends and assuming the friends will help carry him/her up to the restaurant. This identity can also be seen in the case of an individual who blames others for bowel and bladder accidents: Mr GS: People can get really mad about it and blame other people. Like, 'Oh you should not have brought me to this place with this kind of food [that was] going to have this effect on me'. According to many respondents, the disabled identity as total self is accompanied by variable periods of anger over time. For example, Mrs WD spoke about the initial lack of encouragement to express anger during rehabilitation: Mrs WD: Well it wasn't until, near the end of my rehab, that I was comfortable enough to tell someone that I am angry. I'm not like, all smiling, 'oh this is no big deal, you know its ok, I have a wheelchair, but thats all right.' I was damn angry. But there was no one who wanted to hear that? Everybody sort of wanted to hear, 'oh yes, you will be ok, fine, you will be able to manage'. Zola (1982: 222) believes that the lack of aa^ptable means to express anger also results in anger tumed inward, a form of depression. Mrs WD, at the end of the interview, spoke again of her anger with respect to her feelings about living with a SCI for 14 years: Mrs WD: I don't think that my feelings have changed much, I am still very angry about the fact that I am disabled for the rest of my life. But 10 years ago or even 12 years ago, I, you just have to get on with it. You have two choices. You can get on with your life or you can sit at home and dwell on it. I've just decided to get on with my life. The disability is part of it. I am not happy about it. I am certainly resentful about the fact that I can't walk, but that hasn't stopped me from being able to get on with my life. For Mrs WD and the vast majority of the other respondents, the decision to 'get on with their lives' became a pivotal point in their movement along the pendulum. That anger can arise periodically throughout the remaining life course suggests the continuous impact that the injury has on the lives of these individuals. O Basil Blackwell Ltd/Editorial Board 1993 226 Karen K. Yoshida The supernormal identity The supernormal identity is manifested when a respondent engages in activities of an extraordinary nature requiring increased time and energy and/or the person refuses any assistance from others. Charmaz (1987) had discovered a similar identity in her analysis of older persons with a variety of progressive disabling conditions. Her supernormal identity refers to a pwrson with a chronic condition who engages in activities that require a level of fimctioning more demanding than those who are able bodied. Many respondents gave accounts of their supernormal identities in a variety of social situations. Respondents noted they engaged in activities which required more time and energy mainly because of the saliency of the activity to them and to show that they were no worse off than other people.' Engaging in extraordinary activities which were important meant the pursuit of a supernormal identity, reflecting the desire to produce a 'personally valued and socially credited identity in conventional worlds' (Charmaz 1987: 296). Participants in this study discussed experiences to reconstruct personal and socially valued selves as well as to negate 'negative identifying images' (Charmaz 1987: 296). In discussing leisure activities, Mr UO illustrates reconstruction of a valued self: Mr UO: So I pretty much do what I want. You know to the chagrin of a lot of people. [I ask to who]. To who? Well a lot of people will look around you like, for the last couple of years we have winter vacations down south and people have a look at you and say, 'what is this guy in a wheelchair doing down here?' Like I would just lay on the beach or dive into the pool or do whatever. In this quote, Mr UO not only rejects negative images by destroying preconceptions, but he knows exactly in what way to do so, based upon the impression he wants to project of himself. He called this 'playing on the edge': Mr UO: . . . like when I say, 'I'm going horse back riding.' You are doing what? Horseback riding? What are you doing horseback riding? [others say]. Well I say, 'no big deal, I have horses, and I go riding'. And that type of thing. Ah, doing things that other people think I shouldn't be doing. Not that I do them because other people think I shouldn't be, but because I do it. And I want to do it. These activities, however, are not always defined as positive by others. Another respondent, Mr TE, who has hcca injured for 11 years spoke about how other people reacted negatively to him engaging in hunting and fishing: O Basil Blackweil Ltd/Editorial Board 1993 Reshaping of self 227 Mr TE: Ah . . . some people have actually come up to me and have told me I am crazy for doing this. They have seen me out hunting out there with the dog, paddling out to a blind (hiding place out on the water) and they actually told me, 'you have got to be crazy to do this'. And like I said, 'I've been doing this for 15 years and you are telling me I'm crazy for doing this, you don't know what you are talking about'. But you know, it just, they see something they are not used to seeing. He also reflected on the risk taking element of his supernormal identity: Mr TE: But I pay, like I said, the price to do them. Like I get problems with tendinitis and stuff. Zola (1982) had also reflected on the consequences of those with disabilities engaging in a supernormal identity during his stay at Het Dorp. He realised that portrayals of persons with disabilities in the film media of the same vein, sent an ominous message that all persons with disabilities should be able to do the same (Zola 1982: 121-2). The other aspect of the supernormal identity is refusal of assistance from others. The social situation in which this predominant view appears is usually when an individual with a spinal cord injury is getting into their vehicle or going through a door. Another respondent, Mr MK, explains that the 'supercrip' is a person with a spinal cord injury who gets 'totally pissed off about other people who come by and ask if they can help him/her. Ms EM describes her reaction to offers of help with respa:t to opening doors and getting into her car: Ms EM: It depends upon what kind of mood I am in. I am patient and I say, 'no, I am fine'. You know, if I am in a bad mood, I have been known to tell people to f— off! [she laughs]. Which is probably not a very good thing to do, but that is what comes out. Ms EM's variable response to offers of help is based upon her experience of being offered assistance almost everyday in inappropriate ways: Ms EM: Just about once a day sort of thing. I. will get someone coming up to me at some point. You know at school, I will be going down a hallway and someone will be miles away and they will come running up to open the door, like you know? I have no problem opening doors on my own and things like that. It is clear that this identity is one in which individuals with a spinal cord injury engage in over the life course depending upon their definition of various life situations. The disabled identity as an aspect of the total self The disabled identity as an aspect of the total self represents one aspect of the person, as opposed to encompassing or nearly encompassing the O Basil Blackwell Ltd/Editorial Board 1993 228 Karen K. Yoshida total self. In other words, respondents considered both their nondisabled and disabled aspects of self, in varying proportions, in the process of life reconstmction. This identity view was frequently manifested in the decisions that respondents made with respect to various life domains (eg decisions around employment). For example, Ms DC, injured since 1980, had worked as a receptionist for a ski wear company after her injury. She left this job to join a bladder research programme which she hoped would increase her bladder capacity. After three years she had to quit due to recurring complications. After further rehabilitation she started to look for work again in 1987. She discussed her limits for work (frequent emptying of the bladder due to her SCI) with respect to her disability as an aspect of her total self that now had to be taken into consideration: Ms DC: I realized I could not have done half of the stuff I was trying to do. Like receptionist. I would have to go to the bathroom almost every hour in the moming. And you just can't be a receptionist and leave for 10 minutes you know? Due to a settlement from her accident, Ms EKT was able to re-enter the labour force in a business venture which allowed her to organise her work around her paraplegic needs. Another respondent, Mr UO, also illustrates this dual consideration of self (nondisabled and disabled) in making his decision about working in a financial institution versus a health care sales company: Mr UO: . . . I did not think I would fit into the financial institution so the sales company, I knew I had a lot of contacts with people and with [fiancee] as well working in the industry . . . and as well I thought something that I could get involved with and have a bit more input and see if I could change a few things that I was not happy with in this business. Mr UO said earlier during this account that he was 'never really that conservative that he could work in a financial institution'. Thus, he illustrates a consideration of his nondisabled self (not being a conservative person) and his disabled self (experience as a consumer with this sales industry). Finally, other respondents spoke about how the disability became a part of their total being. The following account of Mrs WD demonstrates her movement over time to the disabled identity as an aspect of the total self: Mrs WD: Initially, I sort of felt that I really wasn't a whole person. I also felt that I wasn't a worthy person. I must have done something terribly wrong to have this happen to me in my life. And I have sort of gotten over that and come to terms with that, if it happens, it happens. If you get run over by a bus, it happens. And I feel good about myself, I like myself very much and the fact that I am disabled, is just another C Basil Blackwell Ltd/Editorial Board 1993 Reshaping of self 229 part of my life, I don't like myself any less because of it. But I don't like myself any more because of it. Mrs WD suggests in this passage that initially she held the identity view of the disability as the total self, as indicated by her reference to a lack of 'wholeness'. She then speaks about her merging of the disability with her total self. The majority of respondents in this study held this predominant identity view. The middle self The middle self is a term coined by Mr MK. In speaking about experiences related to 'treating [him]self as a disabled person (disabled identity as total self)', Mr MK spoke explicitly about his continued adjustment to his spinal cord injury in this next passage, which kindled the idea of the pendulum: Mr MK: Actually you get to the point where I went to the other extreme. I became so independent that I wanted to do everything myself. I didn't want anyone to help me. You know? And I guess you know, with a lot of disabled people, they all follow the same trends. They all go to one extreme, to another extreme and they bounce back and forth, getting sort of closer and closer to where they should be and finally, hopefully, eventually they get to the middle. Mr MK expresses the idea of a pendtilum when he talks about 'going from one extreme to another extreme and bouncing back and forth' and finally getting to the middle. The middle self, then occurs when a respondent moves closer to the middle of the pendulum. It refers to individuals who act upon both the nondisabled and disabled aspects of self The middle self however, incorporates three additional elements. First, the individual with a spinal cord injury understands that s/he is in a wheelchair and this is the way it is and will be. For different respondents, this understanding came at different points in the life reconstructive process. One example was Mr KO who asked to be left alone for three days during his acute care period to figure things out: Mr KO: In those three days what was left in life. Is this it? Log rolling from side to side in a bed? What about a chair? When are we getting a chair? Would I be strong enough or well enough to be in a chair? Second, the individual understands there are limitations associated with having a spinal cord injury. One limitation was that many respondents accepted a level of dependency (ie assistance into an inaccessible house) in their lives and did not view it as negative. For example, Mr SS's account of acceptance of dependency in some situations and not others illustrates the pendulum movement around this middle identity view: O Basil BiackweU Ud/Editorial Board 1993 230 Karen K. Yoshida Mr SS: Just like I'll let myself get carried into somebody's house where someone else would say, 'I'm going to stay home from Uncle John's because his place is inaccessible,' I'll go to Uncle John's. I'll get carried up the stairs; sometimes I don't. Sometimes it can be frustrating especially if people do not know how to do it and if its a big flight of stairs. The third element of the middle self is a 'collective disabled consciousness'. This consciousness is illustrated when a respondent considered others with spinal cord injuries or people with other disabilities, in decisions s/he makes with respect to social interaction and everyday life. Individuals may also make comments or reference to persons with disabilities as a distinct and/or as a disadvantaged group similar to others in contemporary North American society. In the following passage, Mr MK describes the 'collective disabled consciousness' of the middle self with respect to the social interaction of assistance into a vehicle: Mr MK: . . . If someone comes by, wanting to help me, I would tell them, 'thank you very much but I don't need it. I can probably handle it, but I appreciate your help though.' Because who knows? The next guy down the road might not be so lucky. To be able to do it himself. He might get stuck one day. And if I yell at him, the guy here, he will go down the street and he will see the other guy and say, 'oh, well I won't touch you, go ahead, help yourself. And I don't think that is fair. In this passage, Mr MK clearly considers his actions and the potential repercussions for other individuals with disabilities. The other aspect of the collective disabled consciousness is illustrated by Mr GS who describes his personal awakening to the reality that his social situation of being disabled and acquiring assistance is sometimes no different than other segments or groups in society. Mr GS: I would like to see a more aware world for physically disabled people. But I don't want to see an [totally] accessible one. I want to see people being helped into places and helped out and it becomes an accepted thing. . . . When somebody is crossing the street, when you see an older person crossing the street and the cars start to go, somebody runs out and says, 'Stop! This lady is still crossing the street'. Thus the middle self centres on a mindset that acknowl^ges and acts upon the nondisabled and disabled aspects of self while incorporating a wider social concern for other persons with disabilities and other segments of society. This dual consideration of the nondisabled and disabled self in the identity views of the disabled identity as aspect of the total self and the middle self does not mean there is always equal consideration of both O BasU BlackweU Ltd/Editorial Board 1993 Reshaping of self 231 aspects all of the time. It means that both aspects of the total self may be taken into consideration, or not, within a given situation, in proportions that are important and specific to the individual and appropriate to the situation at hand. This variable consideration of the nondisabled and disabled aspects of self and the definition of the situation by the individual are central to why identity reconstruction for those with traumatic spinal cord injuries is shaped as a pendulimi. Another respondent, Mr NG typified this movement between identity views. In the following account he spoke about adjusting to wearing a leg bag (to drain urine) around his lower leg: Mr NG: Its one of the things that I am still embarassed about. Telling people that I have to go around wearing a leg bag. I rather, nah, I am still a little embarassed about that. But now, at first I would probably try to hide the fact, now its, I don't advertise it but I am not shy about it and if you [nondisabled people] don't like it, too bad. I have been at this game too long [laughs]. In the first part of the account, Mr NG vacillated between his former self (embarrassed about the leg bag) and his disabled identity as an aspect of his total self (not embarrassed about the leg bag). In the second part of the account, Mr NG indicates the movement towards not being embarrassed about the leg bag was a long term process. Expaimces as [Hrocess Experiences or situations represent 'processes' on the pendulum. Due to the cross-sectional and retrospective nature of these data, the linkage between experiences and identity views can not be viewed in a causal manner. It is suggested that experiences are processes that may influence or shape self. Five 'processes' emerged from the interviews: loss; sustainment; integration; continuity and development of self. These highlight the various contexts involving the nondisabled and disabled aspects of the total self of individuals with traumatic spinal cord injuries. Loss of the nondisabled self refers to loss of core and peripheral aspects of the nondisabled self of the person prior to the spinal cord injury. It appears that loss of the nondisabled aspects of self may stem from many different experiences, desires and expectations. The greatest amount of loss is experienced just after the onset of injury, notably as body losses. Body losses were related to physical capacities, functional limitations and activity restrictions. Corbin and Strauss (1987: 255-6) discuss the importance of body to conceptions of self as the body performs tasks associated with the various aspects of self. Later loss is experienced through everyday life situations and the continuous acceptance of their injury. Mr NG, injured 12 years ago, epitomises this point: e> Basil Biackweil Ltd/Editorial Board 1993 232 Karen K. Yoshida Mr NG: I think its still tough to deal with. Sometimes it still bothers me. . . . I think that people say you have accepted it for so long, I think you have to continue to accept it everyday. Other respondents used different phrases to signify that the 'acceptance' of their spinal cord injury was an ongoing dynamic event. They used phrases such as 'slow process of adaptation', 'ongoing leaming process' and 'still figuring things out'. These refiections of lived experiences indicate the dynamic nature of identity and why predominant identity views may shift over time and situationally. Sustaining the nondisabled self refers to maintaining core and/or peripheral aspects of the respondent. Sustainment in this study refiected action taken by the respondent and/or significant others after the onset of injury. Charmaz (1983: 183) has stated that intimates's view of the individual as their former, pre-illness self will sustain and support the individual's self, post injury. Significant others then, sustained the nondisabled self of respondents by maintaining a link between the respondent and their nondisabled world: Mr GO: My friends would come up on a Friday night and bring a case of beer and sit and drink in the recreation center. Having a good time. Like to sacrifice a Friday night for my friends is a lot. They are into picking up girls every weekend so, to sacrifice that for the hospital kind of makes me feel good. Integration consists of two components: a process of reclaiming lost aspects of the nondisabled self and an initial process of inclusion of the disabled self. Accounts of integration occurred in many different settings, however the most frequent period of integration was upon discharge from the hospital or rehabilitation centre. The problematic nature of integrating the disabled self was reflected in respondents getting used to the additional concerns and tasks associated with having a spinal cord injury, eg bowel and bladder care. For example, Mr SH who has been living with his spinal cord injury for 19 years, discussed the increased time and energy to deal with the extra concems. Over time however, the disabled self became more 'accepted' (ie tasks generally became easier to do) and respondents disctissed their paraplegic needs as any other need. Continuity of the nondisabled self refers to the carrying through of core and/or peripheral aspects of the nondisabled self in the life reconstmction process post injury. Continuity is an active process, in that it is generally initiated and carried out by the individtial. It is the carrying forward of aspects of the nondisabled self into the life reconstmction pro(»ss post injury. Continuity then, represents carrying through and acting upon valued aspects of the nondisabled self The final experience is development of tiie total self. Development refers to the ongoing 'maturation' of the total self and to the continuing process of indtision of the disabled O Basil BiackweU Ud/Editorial Board 1993 Reshaping of self 233 self. Development then, involves the nondisabled and disabled selves of the respondent in everyday life. Many respondents spoke of their increase maturing and patience they acquired after their spinal injury. Mr DA: And I have learned patience that I didn't have before. Ah, in stores, people in a hurry rushing in to get a paper, rushing out again. Getting their evening paper, in a big hurry. These experiences or 'processes' reflect situational influences on the pendulum of self. These experiences bring to the surface the nondisabled and disabled aspects of self Also, these experiences or processes illustrate how self is modified through personal and situational definitions. Case presentations The discussion of the pendulum shape of identity reconstruction so far has been to illustrate in a segmental manner, the predominant identity views using a variety of respondents. Categorised data however, becomes removed from the individual and the context within which these data emerged. In this section, two cases from different socio-demographic backgrounds have been selected for narrative analysis. Case Presentation: Mr GS Mr GS is 31 years old and has been living with his spinal cord injury for 6 years. He is a university graduate who worked in a health care institution as an allied health professional prior to his spinal cord injury. His career plans were directed towards a professional field: Mr GS: I wanted to pursue a professional career at the time, but I was not quite sure what field. I was working at the time, working in a hospital. On the - ward and I wanted to climb the professional ladder, but I wasn't quite sure what capacity and what sector. His parents are both working professionals. His interests had changed from organised high school competitive sports to tmiversity fine arts which lead to a four year focus on dance (ie modem, ballet) prior to his SCI. Mr GS was 25 years old when he sustained his SCI in September of 1983. When he was told by his parents of his injury, during the acute stages of his recovery, his sense of loss was immediate and profound: Mr GS: Well I was really bummed out because I was always really active. I used my body a lot. After I stopped playing sports, I got into studying dance. I was a dancer . . . So the body for me was in use a lot. And I was pretty bummed out. I thought what does that mean in how I move? Will I be able to feel weightlessness again? Which is what you do when you are dancing and since I didn't know any disabled people, I was getting pretty cracked about the whole thing. O Basil BlackweU Ltd/Editorial Board 1993 234 Karen K. Yoshida At this early stage, Mr GS realised that his SCI would have an impact on a significant core aspect of his former self, his love of dance. He also expressed his sense of shock and general lack of comprehension regarding the overall impact of his injury to his life: Mr GS: You can't even say that it is a change at that point? Right? You can only say change when you understand or compare. I couldn't even compare because it was too much moment to moment. There was too much shock involved. When someone is in shock they don't understand what change is. He was however, also aware that for him to understand the implications of this condition, he needed to communicate with other persons with SCI. Mr GS spent about two weeks in intensive care and was visited by his parents every couple of days. His parents, post acute injury represented to him, a sense of connection with the world he knew and most importantly who he was: Mr GS: Very supportive! Very supportive. I remember this so well [my name], I opened my eyes and my parents were at the foot of my bed and my mother was crocheting and my father was sitting like he always does with his legs crossed . . . So that was exactly what I wanted to see when I opened my eyes, that my parents were there. He transferred to a ward for about two months and then was sent to rehabilitation for four months. It was during this time that Mr GS clashed with the rehabilitation staff regarding his 'adjustment'. While he appreciated the physical aspects of rehabilitation, he wanted 'answers to commonsense everyday things'. He wanted someone in a wheelchair to come in and talk to him about 'how to work day to day life'. Mr GS was denied his request and spoke angrily about the situation: Mr GS: There is a whole area that when someone is trying to adjust to something, and when for instance I wanted someone in a wheelchair to come and talk to me. They wouldn't let that happen because of their little professional neuroticism and I felt that hard to take. I was a professional and I said, 'this is not fair. I am paying my bills. I have a right to service.' In this account, Mr GS illustrates a consideration of his disabled self in his request for leaming about day to day life from someone in a wheelchair. Mr GS then displays his core aspects of his former self (allied health professional) in the s^ond half of the account in his argtmient with the rehabilitation staff. Mr GS did speak to persons with other disabilities on the ward to get the 'inside scoop' regarding various facets of daily life; accessible places to shop, to live; what community agencies to interact with regarding resources. He acknowledges that his previous life experiences assisted in his 'adjustment': O Basil Blackwell Ltd/Editorial Board 1993 Reshaping of self 235 Mr GS: And because of who I was before the accident a lot of that stuff came much easier to me. You take a farm boy, put him in that spot and he knows nothing about how to adjust. I had a lot of professional background, a lot of the community contacts, I was not afraid to ask questions. Again, Mr GS exhibits aspects of his former self and his prior professional knowledge enables him to take action with respect to his life reconstruction process. Mr GS did speak to people with other disabilities, because of his desire to learn about his 'adjustment' to his disability. Upon discharge from rehabilitation however, he displays movement back to his nondisabled self (former self) and a clear resistance to his disabled self: Mr GS: I didn't know how to act with this body. I didn't know how to move with this body. I didn't know how to move with this wheelchair thing. It was like, it had to be a part of me now and I didn't want it to be a part of me now. And I felt very alone, very alone and very sad. Discharged in March of 1984, Mr GS went on a vacation back home with his best friend over the summer. He spoke in great detail about this vacation: how they drank beer, went canoeing, visited and partied with other university friends. The vacation allowed Mr GS to reclaim some aspects of his nondisabled self by re-establishing important social relations with significant others. These experiences also illustrated the inclusion of the disabled self again into his total self as Mr GS spoke about getting aroxmd in rural areas using long leg braces and receiving assistance from his friends. His account cited earlier in the section on the middle identity view, concerning a desire for a more aware world in which people helped others illustrated his collective disabled consciousness at the time of the interview. Mr GS indicated that this developing consciousness began during this vacation period: Mr GS: And that where I first started to see that was on that trip, you know? And that was ok, I could take it, these were my friends and so it was a very natural integration? It wasn't like strangers were doing a lot of it first for me. Because my first real contact was with my friends and that was ok. During the fall of 1984, Mr GS went back to his home and joined a number of boards of directors for a variety of voluntary agencies to gain work experience, enrolled in some university courses, played in a wheelchair sport and turned to alternative therapy. He acknowledges that the merging of his disabled self to his total self was mainly attributed to the time that he spent playing a wheelchair sport and interacting with others who had spinal cord injuries: O BasU Btackwell Ltd/Editorial Board 1993 236 Karen K. Yoshida Mr GS: I was playing for the . And that was important. That should never be, that should always be given credit for what can happen around a group, a social group setting. I asked him specifically what were the benefits of this interaction; Mr GS: I was accepted by people who were just like me! We were on a trip and we would go into a hotel, they didn't have to ask me if I needed help, they knew what I needed help with. They never went too far or too little. Mr GS spoke about how his team mates helped him with issues regarding the best means of bladder drainage, how friends and family reacted to their injury, how they went about finding jobs. For Mr GS then, these experiences facilitated inclusion of his disabled self. They were positive experiences that resulted in his growing cormection with the disabled community. The following portion of the interview illustrates Mr GS's movement between identity views: his former self; the disabled identity as an aspect of the total self and the middle self over time; Mr GS: Often with the disabled 1 found whether it was back then (playing sports) or now (interview), it was the internal network and they have got to trust you before they will let you in. [I ask for elaboration]. Well [my name] you are a walkie. You are on the outside (he laughs). They are walkies (points to me), we are gimps, we can say that word to each other for the most part. If you call us that you are like smoked meat! [I ask about the issue of trust]. Its within the circle, there is a certain amount of trust among the disabled community. Even though , its like they are a that fellow disabled person may be a total ass disabled person and they might understand what I have to say just a little bit more. In the first sentence of this account, Mr GS is speaking from his nondisabled self, his former self, as he refers to the 'disabled' requiring trust from the newly disabled person. When I asked for clarification, Mr GS moved and spoke from his disabled identity as a part of his total self when he referred to himself as disabled (gimp) versus abled bodied (walkie). Mr GS's insider/outsider dicotomy clearly distinguished his identity view (disabled identity as an aspect of the total selO and his reference to a circle or disabled community moves him to speak from the middle self. Mr GS spent the next year (1986-1987) involved in alternative medicine to maximise his remaining physiological capacity. He spent a year out of the country to increase his ability to walk with long leg braces and canes. His work insurance (long term disability) gave him the financial resources to pursue this course of action. Mr CrS's quest to enhance his capacity can be interpreted as engaging in the supernormal identity. The O Basil BlackweU Ud/Editorial Board 1993 Reshaping of self 237 desire to walk initially using increased time and energy with or without the assistance of conventional or nonconventional therapies or devices, was a typical response among many respondents. In addition to the importance of body for physical function, Mr GS expressed his desire to be 'whole' again: Mr GS: I started to walk with the canes, I walked further. My legs became part of my body again, instead of two things that were just hanging off. I mean I could walk then . . . From a functional point of view, it is important, but from a personal point of view it is just dramatic! Its like getting married! Its like my God, I have got my body back again! However, Mr GS's growing inclusion of his disabled self moved him out of this supernormal identity view during this period. He realised that he had gone as far as he could with his recovery and that he had come to terms with his SCI and his disabled self (symbolised by the wheelchair): Mr GS: Like 'Hey [his name] you and this wheelchair better get real friendly because this is life'. He returned to Ontario and went back to university for a specific programme that would help him in his career choices. During this point in the interview, Mr GS again exhibited movement between identity views in his experiences of returning to university. Mr GS encountered a great deal of inaccessibility at his university and he again expressed frustration about this situation: Mr GS: I could not get into any of the residences. Can't get into the athletic complex. Can't get into um, to get into the library you have to go through an intricate underground maze, from the teaching building, up and down some ramps, special chair lifts, up and down stairs. You got to buzz somebody to come down stairs with the key, it was just f-—ed. I couldn't get into the business office, couldn't get into the science building. [I asked if these were places he had to go to]. No. These are places that I had a right to go to! I paid my student fees, I fought long and hard about this to the dean of students. I even sat on a committee they struck [he swears here]. You should not be getting my student fees because I can't use your services in this university and you are making me pay for it and I can't use it. In the first part of this account, Mr GS's anger stemmed from his consideration as an individual with a disability (disabled identity as an aspect of self) not having total and reasonable access to a public institution. In the latter half of this account, he speaks more from a middle self as the issue becomes centered on his rights as a student with a disability in which he had to pay full student fees for services he could not use. Mr GS has gone on to work in the area of nonprofits with a social C Basil BlackweU Ltd/Editorial Board 1993 238 Karen K. Yoshida agency concerned with disability issues. Immediately before the accessibility account, Mr GS's discussed his rationale for returning to university: Mr GS: So I looked at what my options were, what I wanted to do and I wanted to get back into things that were more business and I knew that I had a strong background in non-profits and I knew that I had a strong background in counselling and I knew that I had a background working in administration. I was looking at the current trends, the centre of our economy was service-oriented, I knew that disabled people were becoming more and more on the forefront. I knew that it would be just a matter of time, before more and more employers saying that we need disabled people and I knew that there were currently laws in the United States, quotas and it was just a matter of time before Canada would come on board with that. Mr GS's work and related contacts represents his desire for experiences of development or growth of his total or 'future' self; Mr GS: I really like the stuff that I am doing, its really off the wall, not just about work, I am learning an awful lot about me, about people. For Mr GS then, his identity reconstruction since his injury represented a pendulum shape, moving into and out of his former self, the supernormal identity, the disabled identity as an aspect of the total self and Uie middle self. Through his life reconstruction process, he continues to integrate and develop both his nondisabled and disabled aspects of self. Case presentation: Mr RP Mr RP is currently 33 years old and has been injured just over a year. He graduated from high school and was very active in many sports, with hockey his main activity. Both of his parents worked in blue collar occupations; his father worked in the construction industry and his mother in a factory. Mr RP entered the construction field where he became a skilled worker in this industry over 12 years (1974-86). During this time, he got married and has two adolescent children. In 1987, he sustained his spinal cord injury while on the job. Similar to many other respondents, Mr RP knew he had 'broken his back' but was unaware that it involved damage to the spinal cord and its consequences. During rehabilitation, he realised the physical cons^uences of his injury; Mr RP: You are obviously depressed as at that time I could not move. I could not transfer myself, could not dress myself, I could not do anything. It was pretty well starting over. Like other respondents, he was resistant to the inclusion of the newly disabled aspects of self, which in the following account is symbolised by the refusal to use technical aids; O BanI BbdcweU Ltd/Editorial Boant 1993 Reshaping of self 239 Mr RP: I was trying to dress myself and the occupational therapist had all of these aids but I did not want to use them. I would figure it out myself. The sudden loss of many aspects of his former self was further reinforced by his awareness of others: Mr RP: All of the quads (persons with quadraplegia) getting fed, I, I could not handle that at all! Mr RP continues about his initial feelings during rehabilitation and reveals movement over time to an acceptance of others' disabilities and to a degree his own: Mr RP: I would just eat [in dining room] and leave. I found that so depressing, but then afterwards near the end of my stay, I was doing quite a bit. I was actually feeding the guys. It did not bother me anymore. I was exposed to it, I guess. Mr RP's employment stattis was compatible with that pre-injury, as he remained in the construction field in an altemative capacity. In discussion of his work reconstmction, Mr RP displays a supemormal identity in discussing how he combines brace walking with using his wheelchair for mobility: Mr RP: I put them [leg braces] undemeath my pants and I can put the wheelchair in the tmnk [of the car] and then just walk around to the car door [using a walker] and put the walker into the back seat and away I go. [I ask him to continue]. I pull the walker out, get out, walk arovmd, open up the tmnk, get out the wheelchair. I have done this a couple of times. I have to work hard. [I ask how long this process takes.] It would take me a good 20 minutes anyways by the time that I have squared around. In discussing leisure activities, Mr RP again displays his former self and his ambivalence to his disabled self: Mr RP: Well I tise to be very, I use to be very good, baseball. I use to play competitive racquet ball. I just do not think that I would be the same, I would not have the same love for the sport anymore. [I asked why]. I can not get motivated. To do a sport, you have to enjoy it and love what you do and when I played any type of sport, I gave it 150%. I played hockey and racquet ball, baseball, all on a competitive line. And even though I could probably do it in a wheelchair, whether or not I could accept it, I do not know. I just can not put everything into it and if you can not do that, then I can not see playing. For Mr RP, the decision not to participate in sports is based upon his reference to his nondisabled aspects of self. It is incompatible for him O Basil BiackweU Ltd/Editorial Boanl 1993 240 Karen K. Yoshida currently to participate in sports that he had performed in before his injury and he also does not wish to participate in wheelchair sports. Throughout the interview, Mr RP constantly revealed movement mainly between his former self and the supernormal identity. This is not surprising considering Mr RP's reconstruction in various life domains, such as work, acconunodation and marital status is generally continuous with his pre-injury life. However, these relative continuities magnify other aspects of life reconstruction which are currently incompatible with his disabled aspects of self, ie participation in sports and being a father to his son: Mr RP: My son is taking it really hard. We use to do, skiing. He is really taking this the hardest. Mr RP's current plans involve working for another eight years and then, after his family has grown up, he will pursue walking 'in any way possible'. Mr RP acknowledges, however, that he is uncertain how he will feel about his disability in the future: Mr RP: It would be interesting to interview me in a few years. [I suggest that he would be 'mellow' and he agreed]. It is clear from this statement that Mr RP believes that he will change over time, which indicates movement over time of identity views. DiscussHHi and concIiKions This paper has described a model of identity reconstruction and transformation among individuals with traumatic spinal cord injuries. The model consists of five predominant identity views which reflects aspects of the nondisabled and disabled self. The shape of the identity reconstruction is of a pendulum, as the 35 respondents in this study moved back and forth between identity views. While I have taken an insider's perspective which focusses on the subjective experiences of living with a disability, my analysis is limited to a sociological view of first person accounts (Conrad 1987: 5). It is also important to remember that the pendulum model was developed using cross-sectional and retrospective data and thus a causal relationship between identity views and experiences can not be established. The pendulum of self as a model of identity reconstruction, is grounded in the accounts of respondents as they discussed the process of rebuilding their lives. Respondents' accounts of how they reconstructed various aspects of their lives such as labour force participation illmtrated how the nondisabled and disabled aspects of self were taken into consideration in everyday life. The pendulum of self addresses the issues of identity reconstruction as a nonlinear pattern; process and outcome; and how disability merges with the nondisabled aspects of self. Each will be discussed in turn. O Basil Biackwell Ltd/Editorial Board 1993 Reshaping of self 241 The nature of identity transformation as dynamic and shifting is depicted in the pendulimi of self The model is constantly in motion as respondents interpret and take action in their world. The fluidity of the model suggest movement between identity views is over a period of time. However movement can conceivably be from moment to moment, situation to situation, or day by day. Both long term and situational movement is grounded in these respondents' accounts and by the interview process itself in which respondents moved back and forth between their nondisabled and disabled aspects of self. This fluidity between predominant identity views means that identity reconstruction is a continuous, evolving dual-directional process and the assumption that people 'adjust' to their disability once and for all is also challenged. The psychological spinal cord literature clearly acknowledges that stage theories of adjustment do not necessarily depict the 'adjustment' to spinal injury and that coping with a spinal cord injury involves a variety of responses (Trieschmann 1988; 43-7). Charmaz's identity hierarchy represents another shape to identity reconstruction among elderly individuals (the largest proportion of her sample was between 40 to 60 years) with progressive deteriorating conditions (eg multiple sclerosis). It is reasonable to assume that there may be other forms or shapes of identity reconstruction for younger individuals with chronic conditions of a relatively stable nature such as traimiatic spinal cord injuries. The pendulum shape of identity reconstruction may represent an appropriate depiction of response to disability (identity reconstruction) from spinal cord injury with respect to identity reconstruction. The pendulum of self as a model of identity reconstruction considers both outcomes of identity reconstruction (identity views) and processes or experiences which may shape different aspects of self Research in the sociology of chronic illness and disability has illuminated various aspects of identity reconstruction as either process or outcome concepts. In this paper, a model of identity reconstruction that considers both elements may increase our understanding of the nature of identity reconstruction and transformation, in a more comprehensive manner. Experiences represent situations or contexts which respondents define and take action upon. Related to experiences is the assumption that having a disability is inherently and totally negative. These data suggest that this is not always the case. Respondents in this study generally speaking, perceived the identity views as valued positions, the exception perhaps was 'the disabled identity as total self. This view however, is still an important one as there were accounts expressed by respondents that demonstrated greater or total consideration of the disabled self in specific situations. More specifically, accounts concerning the experience of development and the identity view of the middle self, refute this claim, as many respondents talked about the opportunities to engage in activities that they would not have been able to do before. Others spoke of their own 'maturation' as a O Baal BlackweU Ltd/Editorial Board 1993 242 Karen K. Yoshida person, for example becoming more patient, assertive or considerate of others. Thus, positive experiences may emerge from living with a disability.^ In the literature, some conceptualisations of identity reconstruction are depicted as downward planes. For example, 'identity hierarchy' (Charmaz 1987) refers to downward movement through the hierarchy with respect to progressive chronic illness. This clearly reflects a differential of value among the identity outcomes she develops in her model. The pendulum of self also addresses the issue of how inclusive the disability is to the total self concept of the individual. Much research has assumed that the disability is either the most important aspect of the person with a disability and his/her self concept/definition. Fine and Ash (1988: 11-12) argue that a person with a disability is more likely to compare him/herself with others of his/her own gender, age, occupation and other salient social comparison groups. On the other hand, much research has not been explicit in specifically delineating the influence of the disability with respect to identity in their work (Charmaz 1987; Corbin and Strauss 1987). The pendulum of self deals with this dilemma with regards to the consideration of the place of disability in relationship to the total self. The pendulum promotes the variable consideration and merger of the nondisabled and disabled aspects of self to the individuals' total self. The pendulum of self interrelates a number of concepts to form a grounded middle range substantive theory of identity transformation and reconstmction after traumatic spinal injury (Glaser and Strauss 1967; Glaser 1978). As middle range substantive theory, the generalisability of the findings has to be considered. Conrad (1987: 17-19) believes that the usual form of generalisability (ie can the findings from the study apply to other samples of individuals who are spinal cord injured or other disability) is inappropriate since a random sample is generally not used in most qualitative research. He suggests that an alternative form of generalisabUity which focusses on the generalisability of concepts be considered. This means how generalisable are the concepts developed in one study to other groups, settings and situations? (Conrad 1990: 1258-9). It appears that asp^ts of the pendulum of self are evident in other works on living with a disability and in other substantive areas such as the field of aging. Charmaz's (1983; 1987) concepts of loss' and the supernormal identity parallel the concepts in this study. In the field of aging the notion of transformation (Breytsparaak 1984) and continuity in studies of identity among older women (Mac Rae 1990: 257-S) is evident. These examples of generalisability of concepts across substantive areas promotes conceptual strength and increases our understanding of identity transformation in general. Future research can examine the identity changes using the pendulum model with other disabilities or other situations in which identities may be under assault during imexpected changes, loss and uncertainty, such as the loss of a spouse, recent divorce or losing one's job. Identities may be C Basil BUKkweU Ltd/Editcwial Board 1993 Reshaping of self 243 highly transitory or fluid in these situations, vascillating between identity states. It is this continuous refinement and modifying of the model which will ensure its theoretical and practical relevance with respect to the process of identity reconstmction and transformation. Address for correspondence: Dr Karen K. Yoshida, Department of Rehabilitation, Division of Physical Therapy, University of Toronto, Toronto, Ontario, Canada M5T1W5 Acknowledgments This study was supported hy the National Health Research and Development Program in the form of a National Health and Welfare Ph.D fellowship between 1987-1990, from Heahh and Welfare Canada. The author also wishes to thank Drs M.J. Kelner, D. Locker, K. Allison and R. Fitzpatrick for their critical review of various drafts of this manuscript. Notes 1. A colleague who has a SCI, commented on an earlier draft of this paper stating that his supernormal tendencies are not to prove that he is better than others but to prove he is 'not worse off than others'. 2. A colleague spoke about another person who had a disability. This particular individual stated that he did not want to ever be able-bodied again because of what he has learned and experienced with his disabihty. 3. C. Carpenter's found in her study of individuals with traumatic spinal cord that loss and continuity of the nondisabled self were key concerns. She used an educational leaming approach for her study. References Anderson, R. and Bury, M. (1988) Introduction. In Anderson, R. and Bury, M. (eds) Living with Chronic Illness: The Experiences of Patients and Their Families. London: Unwin Hyman. Blumer, H. (1969) Symbolic Interactionism: Perspective and Method. Englewood Cliffs, New Jersey: Prentice-Hall. Breytspraak, L. (1984) The Development of Self in Later Life. Boston: Little, Brown and Co. Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness, ^, 167-82. Charmaz, K. (1983) Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, 168-95. Charmaz, K. (1987) Struggling for a self: Identity levels of the chronically ill. In Roth, J.P. and Conrad, P. (eds) Research in the Sociology of Health Care. Greenwich CT: JAI Press. © Basil Blackweii Ltd/Editorial Board 1993 244 Karen K. Yoshida Charmaz, K. (1990) Discovering chronic illness: using grounded theory. Social Science arui Medicine, 30, 1161-72. Conrad, P. (1987) The experience of illness: recent and new directions in the experience and management of chronic illness. In Roth, J.P. and Conrad, P. (eds) Research in the Sociology of Health Care. Greenwich CF: JAI Press. Conrad, P. (1990) Qualitative research on chronic illness: a commentary on method and conceptual development. Social Science arui Medicine, 30, 1257-63. Corbin, J. and Strauss, A.L. (1987) Accompaniments of chronic illness: Changes in body, self, biography and biographical time. In Roth, J.A. and Conrad, P. (eds) Research in the Sociology of Health and Care, Greenwich CT: JAI Press. Corbin, J. and Strauss, A.L. (1988) Unending Work and Care, San Francisco. CA: Jossey-Bass Co. Fine, M. and Ash, A. (1988) Disability beyond stigma: social interaction, discrimination, and activism, /. Social Issues, 44, 3-21. Fontana, A. and Smith, R.W. (1989) Alzheimer's disease victims: The unbecoming of self and the normalization of competence. Sociological Perspectives, 32, 35-46. Gallagher, E.B. (1976) Lines of reconstruction and extension in the Parsonian sociology of illness. Social Science and Medicine, 10, 207-18. Gerhardt, U. (1990) Patients careers in end-stage renal failure. Social Science and Medicine, 30, 1211-24. Glaser, B. and Strauss, A. (1964) Awareness of Dying. Chicago: Aldine Pub. Co. Glaser, B. and Strauss, A.L. (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Pub. Co. Glaser, B. (1978) Theoretical Sensitivity. Mill Valley CA: Sociology Press. Goffman, E. (1959) The Presentation of Self in Everyday Life. New York: Doubleday. GofTman, E. (1961) Asylums: Essays on the Social Situation of Mental Patients and other Inmates. New York: Anchor (Doubleday). Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood ClifTs NJ: Prentice-Hall. Groch, S. (1990) Disability consciousness as common cultural identity. Paper presented at the Annual Meetings of the Society for Disability Studies, Oakland, California. Hahn, H. (1990) Reformulating a sense of personal identity through the history of disabled people. Paper presented at the Annual Meetings of the Society for Disability, Oakland California. Hughes, E.C. (1958) Men at Work. Glencoe: Free Press. Locker, D. (1983) Disability and Disadvantage. London: Tavistock. Locker, D. and Kaufert, J. (1988) The breath of life: medical technology and the careers of people with post-respiratory poliomyelitis. Sociology of Health and Illness, 10, 2 3 - ^ . MacRae, H. (1990) Older women and identity maintenance in later life. Canadian J. Aging, 9, 248-67. Maddox, S. (1987) Spiral Network. Spinal Network and Sam Maddox, P.O. Box 4162, Boulder CO. 80306. Mead, G.H. (1934) Mind, Self and Society from the Standpoint of a Social Behaviourist. Chicago: University of Chicago Press. Orona, C.J. (1990) Temporality and identity loss due to alzheimer's disease. Social Science and Medicine, 30, 1247-56. © Basil BlackweU Ltd/Editorial Board 1993 Reshaping of self 245 Seidel, J.V., Kjoiseth, R. and Seymour, E. (1988). The Ethnograph: a User's Guide (Version 3.0). Littleton, Colorado: Qualis Research Associates. Strauss, A.L. (1969) Mirrors and Masks. Mill Valley, CA: Sociology Press. Strauss, A.L., Fagerhaugh, S., Suczek, B. and Wiener, C. (1982) Sentimental work in the technological hospital. Sociology of Health and Illness, 4, 254-78. Strauss, A.L. and Glaser, B.G. (1975) Chronic Illness and the Quality of Life. St. Louis, MO: Mosby. Trieschmann, R.B. (1980) Spinal Cord Injuries: Psychological, Social and Vocational Rehabilitation. New York, NY: Pergamon Press. Trieschmann, R.B. (1988) Spinal Cord Injuries: Psychological, Social and Vocational Rehabilitation, 2nd ed. New York, NY: Demos Pub. Williams, G. (1984) The genesis of chronic illness: narrative reconstruction. Sociology of Health and Illness, 6, 175-200. Zola, LK. (1982) Missing Pieces: A Chronicle of Living with a Disability. Philadelphia: Temple University Press. C Basil BlackweU Ltd/Editorial Board 1993