Living with paraplegia: tensions and contradictions.

Living with paraplegia: tensions and contradictions. Paraplegia paraplegia(pâr'əplē`jēə), paralysis of the lower part of the body, commonly affecting both legs and often internal organs below the waist. When both legs and arms are affected, the condition is called quadriplegia. is caused by an injury to the spinal cord spinal cord,the part of the nervous system occupying the hollow interior (vertebral canal) of the series of vertebrae that form the spinal column, technically known as the vertebral column. at thethoracic thoracic/tho��rac��ic/ (thah-ras��ik) pectoral; pertaining to the thorax (chest). tho��rac��icadj.Of, relating to, or situated in or near the thorax. , lumbar lumbar/lum��bar/ (lum��bar) pertaining to the loins. lum��baradj.Of, near, or situated in the part of the back and sides between the lowest ribs and the pelvis. , or sacral sacral/sa��cral/ (sa��kral) pertaining to the sacrum. sa��craladj.In the region of or relating to the sacrum.sacral,adj pertaining to the sacrum. levels that results in paralysis of thelower extremities. People with paraplegia have full use of upperextremities, but balance, trunk stability, and ability to ambulate am��bu��late?intr.v. am��bu��lat��ed, am��bu��lat��ing, am��bu��latesTo walk from place to place; move about.[Latin ambul varydepending on the level and completeness of the injury. People withparaplegia also have changes in bowel, bladder, and sexual function.After a relatively brief hospital stay, the majority of people withparaplegia return to independent living in the community. Despite the possibility of independence in most or all activities,individuals with paraplegia face multiple challenges that are common topeople who have either paraplegia or tetraplegia tetraplegia/tet��ra��ple��gia/ (-ple��jah) quadriplegia. tet��ra��ple��gian.See quadriplegia.tetraplegiaparalysis of all four extremities; quadriplegia. (paralysis of bothupper and lower extremities). However, important differences may beassociated with adjusting to paraplegia. For example, DeVivo andcolleagues (1991) found higher suicide rates for people with paraplegiathan for those with tetraplegia; another study found that althoughphysically more capable, people with paraplegia experienced a higherincidence of pressure sores than people with tetraplegia (Anderson &Andberg, 1979). These findings seem counter-intuitive and suggest a needfor research exploring the differentiated experience of people withparaplegia (Buckelew, Frank, Elliot, Chaney, & Hewett, 1991;Stensman, 1994; Tate, Maynard, & Forchheimer, 1993; Trieschmann,1992). Most research examining adjustment issues associated with spinalcord injury Spinal Cord InjuryDefinitionSpinal cord injury is damage to the spinal cord that causes loss of sensation and motor control.DescriptionApproximately 10,000 new spinal cord injuries (SCIs) occur each year in the United States. has been generically focused. Although it consumes arelatively brief period of the experience of living with paraplegia, theinpatient stage has been the focus of the majority of this research.This is problematic for two reasons. First, research suggests thatunderstanding the immediate responses to the injury may not provideparticularly valuable information for anticipating and understanding theissues for the person on his or her return to the community (Duggan& Dijkers, 1999; Rogers & Kennedy, 2000). Second, focus on theinpatient period fosters the illusion that adjusting to a life-alteringinjury represents a time-limited, discrete "stage"; theongoing challenges and successes that continue long after the hospitalstay are rendered invisible. A limited body of research has focused on the person with spinalcord injury after they return to the community. Most research has beengrounded by a biomedical model The biomedical model of medicine, has been around since the mid-nineteenth century as the predominant model used by physicians in the diagnosis of disease.This model focuses on the physical processes, such as the pathology, the biochemistry and the physiology of a disease. of understanding and has focused oncoping skills, life satisfaction, quality of life, and subjectivewell-being, using standardized measures. It has revealed interesting butsometimes incompatible or unexplainable findings (Fuhrer f��h��reralso fueh��rer ?n.A leader, especially one exercising the powers of a tyrant.[German, from Middle High German v��erer, from v��eren, to lead, from Old High German , 1994; Ville,Ravaud, & Tetrafigap Group, 2001) that could not be pursued becauseof methodological limitations. Some qualitative studies are emerging,grounded in a more interpretive approach, but even these have limitedparticipants' responses by focusing on areas such as spirituality(McColl et al., 2000), critical events (Duggan & Dijkers, 1999),quality of life (Boswell & Dawson, 1998), and motivation (Brillhart& Johnson, 1997). Disability advocates have been vocal about theneed to better incorporate the voices of people with a disability(Barnes, 2003; Barton & Oliver, 1997; Kitchin, 2000; Wendell, 1996),and methodological pragmatists (for example, Fuhrer, 1994; Rogers &Kennedy, 2000) have identified a need for qualitative studies to developmore in-depth insight into the subjective experience of living with aspinal cord injury. With few exceptions research in this area has reflected a medicalperspective that tends to conceptualize con��cep��tu��al��ize?v. con��cep��tu��al��ized, con��cep��tu��al��iz��ing, con��cep��tu��al��iz��esv.tr.To form a concept or concepts of, and especially to interpret in a conceptual way: the individual in isolation fromhis or her psychosocial psychosocial/psy��cho��so��cial/ (si?ko-so��shul) pertaining to or involving both psychic and social aspects. psy��cho��so��cialadj.Involving aspects of both social and psychological behavior. context (Barnes, Mercer, & Shakespeare,1999; Ville et al., 2001). Although a focus on the individual isimportant, there are limitations associated with this vantage point.Foremost is its assumption that the individual is the center of control;hence the onus is on the individual to change. A social constructionist con��struc��tion��ist?n.A person who construes a legal text or document in a specified way: a strict constructionist. perspective challenges this notion, suggesting that although theindividual constructs his or her own reality, this reality isconstructed within and by a broader sociohistorical context. From thisperspective there is an assumption that individual experience is shapedby society's response to the individual. This understanding isconsistent with the directives suggested by the World HealthOrganization (WHO), recognizing that "disablement occurs within andby means of contextual factors" (WHO, 1998, p. 7) and reflects apremise of emancipatory e��man��ci��pate?tr.v. e��man��ci��pat��ed, e��man��ci��pat��ing, e��man��ci��pates1. To free from bondage, oppression, or restraint; liberate.2. disability research (Barnes, 2003). Empirical data are emerging that support the importance of thesocial context for shaping perceptions of quality of life after a spinalcord injury. Reviewing research in this area, Fuhrer (1996) found thatparticipation, defined as the scope of social obstacles andopportunities, consistently emerged as a more significant predictor oflife satisfaction than either functional status or activities. Othershave reported similar findings (for example, Dijkers, 1997; Pierce,Richards, Gordon Richards, Gordon,1904–86, British jockey. He began as a stable apprentice in 1919. From the mid-1920s until his retirement in 1954, he was the championship jockey of England 26 times. , & Tate, 1999). This research recognizes theimportance of context on quality of life but provides little insightregarding how individual experience is shaped by societal response. The purpose of this study was to examine the experience of livingin the community from the perspective of the person with paraplegia andto conceptualize this private experience in a broader sociopolitical so��ci��o��po��li��ti��cal?adj.Involving both social and political factors.sociopoliticalAdjectiveof or involving political and social factors context. METHOD The theoretical underpinnings of this qualitative study arepredominantly from three schools of thought--hermeneutics, emancipatorydisability research, and feminist postmodernism. Hermeneutics hermeneutics,the theory and practice of interpretation. During the Reformation hermeneutics came into being as a special discipline concerned with biblical criticism. provided aphilosophical base for characterizing the research process as aninteractive, constantly questioning and inter-subjective production ofknowledge focused on uncovering, or making meaning of, everydayexperiences (Kvale, 1996). It recognizes the outcome of the researchprocess as a cocreation between the researcher and research participant. Postmodernist ideas provide a lens for examining andconceptualizing personal experiences in a broader societal context.Postmodernism draws attention to the use of language for constructingreality and posits that people not only interpret but actually organizetheir experiences through "storying" Personal stories do notsimply reflect individual choice but are shaped by availablediscourses--interrelated systems of statements that cohere cohere (kōhēr´),v to stick together, to unite, to form a solid mass. around commonmeanings and reflect sets of assumptions, values, and beliefs that aresocially shared (Gavey, 1997). In other words Adv. 1. in other words - otherwise stated; "in other words, we are broke"put differently , an individual'spersonal story reflects the beliefs, ideas, and assumptions to whichthat person has been exposed as he or she has interacted with familiar,social, political, economic, spiritual, and cultural milieus. Multiplediscourses may be available to make sense of a particular experience,some more powerful than others, and these discourses may complement orcompete with one another (Davies & Harre, 1990). This understandinghighlights the importance of attending to the use of language as a meansof moving beyond a description of personal experience to an analysis ofhow it is constructed (Kvale, 1996), with a goal of making visible thetaken-for-granted assumptions underlying dominant discourses andarticulating values supported by alternative conceptions of reality(Gavey). Emancipatory disability theory took this focus on linking thepersonal to a broader societal context a step further by positioning theresearch process as an explicitly political and moral endeavor strivingfor the removal of barriers and the promotion of individual andcollective empowerment for people with disabilities (Barnes et al.,1999). Emancipatory research couches discussions of disabledpeople's experiences in an environmental and cultural setting thathighlights the disabling consequences of a society organized around theneeds of a nondisabled majority; opens to scrutiny the researchers'standpoint; and produces research that has meaningful practical outcomefor people with disabilities (Barnes, 2003). Prospective participants were located by sending invitational in��vi��ta��tion��al?adj.Restricted to invited participants: an invitational golf tournament.n.An event, especially a sports tournament, restricted to invited participants.Adj. 1. letters to all individuals with an uncomplicated diagnosis of paraplegiawho had been discharged from the tertiary rehabilitation hospital Hospital devoted to the rehabilitation of patients with various neurologic, musculoskeletal, orthopedic and other medical conditions following stabilization of their acute medical issues. withinthe preceding two years and lived within commuting distance ofVancouver, British Columbia British Columbia,province (2001 pop. 3,907,738), 366,255 sq mi (948,600 sq km), including 6,976 sq mi (18,068 sq km) of water surface, W Canada.Geography . This population consisted of 14 potentialparticipants--three women and 11 men--of whom three (including twowomen) declined to participate and four could not be reached. The final sample consisted of seven men who, within the precedingtwo years, had suffered a spinal cord injury that resulted inparaplegia. This small sample size is consistent with this type ofqualitative research Qualitative researchTraditional analysis of firm-specific prospects for future earnings. It may be based on data collected by the analysts, there is no formal quantitative framework used to generate projections. in which the emphasis is on analytic insights andinterpretations as opposed to statistical generalizations or generatinginclusive theory (Alvesson & Skoldberg, 2000; Kvale, 1996). Five of the seven men had complete lower body paralysis, and twohad some sparing of sensation and movement. Six participants hadtraumatic injuries, and one had suffered an infection. Ages ranged from28 to 51, and the length of time since the injury was between eight and21 months, averaging 13.8 months. Six participants were employed beforetheir injury, and one was a full-time student; after the injury nonewere employed, although five were contemplating work, and two werepursuing educational or vocational training. One participant had asecond-generation Middle Eastern background, the remainder were fromwhite, middle-class Western backgrounds. One participant was married;those who specified described themselves as heterosexual. Personal, indepth interviews were conducted by the fourprofessional social workers who made up the research team. Fiveparticipants were interviewed twice; two individuals, because ofprolonged scheduling conflicts, were interviewed only once. Fourquestions guided the first interview: (1) a general question aboutpersonal background, (2) a more focused question about living in thecommunity with paraplegia, (3) a question about a typical day, and (4) asummary question to determine what participants felt others should knowabout their experience. The intent was to ensure the opportunity for theparticipant to tell the interviewer what he thought was important toknow about the experience while simultaneously ensuring that thegenerated knowledge remained grounded in the day-to-day experience.Furthermore, this study was guided by the understanding that personalstories are organized according to according toprep.1. As stated or indicated by; on the authority of: according to historians.2. In keeping with: according to instructions.3. culturally available reasoningprocesses; in other words, culture, used broadly here to referencesocietal values and beliefs, speaks through an individual's story(Reissman, 1993; Rosenwald & Ochberg, 1992). This flexibleinterviewing structure was important for creating the space forparticipants to story their experience to facilitate an analysis ofpersonal experience in a broader sociopolitical context (Kvale, 1996). All interviews were audiotaped and transcribed verbatim.Participants were given a copy of their own transcript and a synopsis oftheir story, including emerging themes, and were encouraged to providefeedback and clarification during a second interview. This processhelped generate a more complex, comprehensive understanding and allowedthe opportunity to validate emerging ideas. Total time spent with eachparticipant averaged two and one-half hours. Analysis began after the first interview and was initially donecollaboratively by the research team, which conducted a detailed,line-by-line reading of each transcript. Attention was paid to what wassaid, how the story was told, and what was not said--this includedexamining the sequence of how the story unfolded, scrutinizing the useof language, and considering the nonverbal non��ver��bal?adj.1. Being other than verbal; not involving words: nonverbal communication.2. Involving little use of language: a nonverbal intelligence test. intonations (for example,emphatic voices or crying) associated with the words. A contextualizedaccount of each person's experience was then developed and sharedwith the participant to ensure it captured the essence of hisexperience. Through this process, general themes that cut across thedifferent cases began to emerge. The next step was to compare andcontrast these emerging ideas across the cases to more fully developthem. To do this, each interviewer coded the transcripts of theparticipants she had interviewed using the emerging ideas as organizingcategories. One person then examined the information segments in eachcategory to begin to elaborate the essence of it as a theme. During thispart of the process, particular attention was paid to identifying andexploring contradictions. The research team met again to discuss andrefine the emerging understanding. FINDINGS I'll detail the obvious for you, but paraplegia is a major life-altering event because you're put in a physical situation that's limiting. You can only do so many things now and try as we may to make life like it was, it's not. And it will never be. For the men in this study, life was clearly divided into"before" and "after" The spinal cord injury abruptlyhalted life as each of the participants had known it, and a new way ofexperiencing the world was encountered. Positioning themselves in thisexperience holistically to reflect the injury while simultaneouslymoving beyond it emerged as the critical struggle. This was an evolvingand ongoing process that involved a complex interplay between internalperceptions and external productions. Four interrelated in��ter��re��late?tr. & intr.v. in��ter��re��lat��ed, in��ter��re��lat��ing, in��ter��re��latesTo place in or come into mutual relationship.in challengestextured the experience: (1) maintaining an identity beyond the medical;(2) contending with difference; (3) addressing the work of day-to-dayliving; and (4) balancing support and independence. Transcending the Medical Demonstrating the extent that the medical discourse had beeninternalized, all participants described their status using medicalterms and jargon. For example, when asked to "Tell me a bit aboutyourself," one participant responded: I'm a T10 Asia A complete paraplegic. I had a burst type fracture to my 10th vertebrae, and my 9th and 11th were damaged as well, and I have a fusion from L1 to T8. I have no motor sensation and no motor skills, no feeling of hot or cold or anything like that, and there is some spasticity. Although most started here, the importance of being seen beyondtheir injury surfaced repeatedly as an ongoing challenge, with half ofthe participants speaking at length about the problems they encounteredin being seen beyond their medical or physical status. This began in therehabilitation rehabilitation:see physical therapy. stage, which was "more physical rather than mentalor whatever, which for the real world simply isn't [theissue]." It continued long after the acute phase when participantswere trying to get on with their lives and limited priority was given toany but their medical needs. For example, although participantsindicated that no expenses were spared in relation to medical tests,several found resources lacking to address vocational and psychosocialneeds. This focus on the medical could be particularly damaging asparticipants tried to re-evaluate their lives and adjust priorities. And so it was very important for me to, basically, put my injury and physical condition in its proper place. And everybody seemed to be putting it at the top and I'm trying to drag it down and put it about 3 or 4.... You know, mentally and physically those two halves of our bodies I used to put 50/50 each. But now I would put mentally as 70 percent of who I am and physically as 30 percent of who I am. Hope, in the midst Adv. 1. in the midst - the middle or central part or point; "in the midst of the forest"; "could he walk out in the midst of his piece?"midmost of a medical understanding, emerged as complexalbeit important component of the experience. Suggesting the tenuouscommitment to a permanent vision of themselves as someone with adisability, all participants referred to the role of hope in theirexperience. Six of the seven participants conveyed their belief that"hope was all you had." For some this hope was focused on aphysical cure, but for others it was less ambitious--that conductingtheir lives would become easier. Irrespective of irrespective ofprep.Without consideration of; regardless of.irrespective ofpreposition despitethe basis for theirhope, holding onto it was seen as critical and challenging. The medical approach to their care was cited by almost everyone asa deterrent to holding onto hope. Several participants indicated thathealth care providers conveyed an assumption that individuals could notaccept their limitation if they did not give up hope. There was one individual that communicated to me "look you're disabled and get used to it," and there was a kind of negative connotation, you know, because I was all frustrated and she was trying to bring me to the ah, dark side. Where it was like, you have to learn to accept. Well, yeah, I knew that! Her grasp of the obvious was nothing short of extraordinary. Participants made it clear that living in the present did notpreclude contemplating the future; both could be managed simultaneously.Giving up hope was seen as "the end of the story." The first challenge these men encountered, and continued toencounter, was seeing and being seen apart from their medical condition.There was an obvious tendency for their medical status to assumepreeminence in defining who they were. In some ways this was notsurprising. Dealing with the ramifications ramificationsnpl → Auswirkungen plof the injury was a priority.The challenge was to acknowledge the injury while simultaneouslyinsisting on a broader conceptualization con��cep��tu��al��ize?v. con��cep��tu��al��ized, con��cep��tu��al��iz��ing, con��cep��tu��al��iz��esv.tr.To form a concept or concepts of, and especially to interpret in a conceptual way: of self. This reconstructiontook place in a context that seemed to resist efforts to establishuniqueness and refocus Verb 1. refocus - focus once again; The physicist refocused the light beam"focus - cause to converge on or toward a central point; "Focus the light on this image"2. priorities. Moreover, the importance placed onhope suggests that the evolving sense of self was not the preferredreality, but was born of necessity. Hope emerged as the transitionallink that provided nourishment nour��ish��mentn.Something that nourishes; food. to deal with the present without negatingthe past. Contending with Difference A related challenge was the need to locate oneself in a broadersocietal context. Feeling "different" emerged as an importantand disturbing aspect of the experience of living with paraplegia forall participants and was related to being simultaneously invisible andoverly visible in the eyes of the community. Well, you feel self-conscious of course. Just automatically you look more at people to see if they're looking at you, and of course they are. Because you're different, right? It's like anybody else that's different. Like any minority, right? If you stand out slightly, pardon me, roll out differently, they're going to notice you. Physically, participants felt vulnerable when interacting with thewalking community because, as one participant noted, "you areseeing everybody at bum level," and they are not seeing you. Notedanother: You feel vulnerable in a wheelchair right? I was a physically intimidating kind of guy before. Like not overly, but I was 6'1", 200 pounds, and I had a shaved head and everything. Right now I'm about 3'9". I could get pushed over by anybody, right? Responses they received from others confirmed the sense ofdifference. I just notice, from strangers, they're more open to talk to or to help you.... Whereas before people just walked by.... Well, in a way people are nicer, but in another way, they all kind of look at you. It's just, well grabs people's attention. The attention generated was not obviously negative. None of theparticipants described situations in which they experienced overt publicharassment Ask a Lawyer QuestionCountry: United States of AmericaState: NevadaI recently moved to nev.from abut have been going back to ca. every 2 to 3 weeks for med. . The responses were more subtle and often recognized asmotivated by well-intentioned strangers. Described one participant,"Everybody asks you if you need help. "Do you need anyhelp?" "I am having a hard time but ... you know if I wantedhelp I would have turned and asked you!" These unrequested offersof assistance resulted in anger, possibly related to the recognitionthat the underlying assumption was that the participant was no longercapable. All participants believed that the wheelchair drew people'sattention. Two participants described attending an event where theytransferred into the regular seats rather than remaining in theirwheelchair. Asked to describe a "good day," one participantresponded: I went to a football game. And ... the buddy that invited me, he knew the guard really well cause he's got season's tickets, so I wheeled to where the seat was for me, got out of my chair and into the seat and they locked my wheelchair up in the staff room. NOW it seems normal to me. I'm just like the rest of the guys here. I'm sitting in there. I'm not over in the wheelchair sitting ... and it was a great time. Things were normal you know. And I REALLY enjoyed that day. [emphasis in original] One participant described how much easier it was once he replacedhis chair with a cane. With a cane it was not so bad. But when I was in a chair, it was terrible getting around. You know, you're always thinking people are looking at you and you just don't want to get out there ... Going out in the community was scary because of being in the chair. It was very very scary, and I just wanted to stay at home, and yeah I found it very scary. Other participants found alternative ways to travel to counter thenegative image conveyed by the wheelchair. For example, two participantsenjoyed riding hand cycles, and two others talked about the importanceof driving as a means for attaining a more "normal" image. Although all participants felt exposed, the subtlety of it fosteredself-doubt in some about their interpretations of community responses. I guess a lot of it is probably in my mind because when I went with my dad to the shopping mall, this couple was looking towards my side and I told my dad, "what's their problem? Why are they starting at me?" My dad say 'they're not staring at you' ... So maybe a lot of it is my insecurity. Most participants spontaneously identified interacting with otherpeople like themselves as a way to combat the feeling of difference.Being "in a chair" was identified by all the participants asthe defining boundary between "them" and "us" thepositioning of people with paraplegia who did not require a chair wasmuch more ambiguous. This community was "sort of like afraternity" or "an exclusive club--not one I'mparticularly happy being a member of, but nonetheless I am." Animportant benefit of "membership" was the sense ofunderstanding that could only be established through shared personalexperience. We used to have these hallway hangouts--and that kind of annoyed some nurses but to me they were just the best. Time to sit around and talk.... And we told some pretty bad jokes about quadriplegics and some, you know we joked about those difficult things ... Like I got voted the most broken but unparalyzed. And to me it was funny. You know, it was like we were all sitting around and just deciding to get on with it anyway ... just a bull session where the chairs really didn't matter. Because we were all in them. This shared understanding included an insider humor humor,according to ancient theory, any of four bodily fluids that determined man's health and temperament. Hippocrates postulated that an imbalance among the humors (blood, phlegm, black bile, and yellow bile) resulted in pain and disease, and that good health was that outsiderswould totally miss. Given the frequency with which participantsmentioned the use of insider humor, it seemed to have considerableimportance. It was, however, only with others similar to themselves thathumor could be appreciated. And this woman comes in the elevator and.... she says, "boy I'm lucky. I'm glad the elevator is going up instead of down because I don't want to have to walk up the stairs." And she looked at me and she realized I guess that she'd said a stupid thing, eh. So like, what did she do? She said another thing that was worse. It was 'Oh, you got the best seat in the house there, don't you? Real convenient.'" So like she thought she was being funny, eh. And I just looked at her and said, "Yeah real, real, real convenient". The shared experience of being in a wheelchair was strong enough toencourage social interactions with strangers. Talking about seeinganother person at a lacrosse lacrosse(ləkrôs`), ball and goal game usually played outdoors by two teams of 10 players each on a field 60 to 70 yd (54.86 to 64.01 m) wide by 110 yd (100.58 m) long. Two goals face each other 80 yd (73. game in a wheelchair, one participant said: But I knew that all during the game I was going to go over and say hi to this guy. And I went over and said hi to him and ... we asked each other the standard question, how long have you been in the wheelchair, what's your level of injury, la, la, la. City living was seen as "more geared for people inwheelchairs" and meant that one "ran into people all the timein wheelchairs, so I think I am more comfortable that way" This wasone reason one participant, originally from a much smaller community,chose to remain in the city after his injury even though he had nonetwork of family or friends. Interestingly, despite the professed common bond, most participantshad limited involvement with other people with spinal cord injury oncethey returned to the community, although several identified how helpfulthis might be. Limited opportunity to meet other people in wheelchairswas cited by several participants as a problem. Moreover, connectionsforged in the rehabilitation hospital were not maintained. The reasonsprovided for the loss of contact seemed to fundamentally rest on thenotion that shared physical limitations were not enough, in and ofthemselves, to sustain a relationship. Noted one participant: "Theywere not the type of people I would have chummed with before." Inaddition, a tendency to be constantly comparing one's abilitiesagainst other people with a disability emerged repeatedly as a deterrentto continued interactions, because the individual could either feeldeficient if he were not managing as well as the other person or guiltyif he were managing better. Participants' stories then, suggest that a sense of differencepervaded their experience, which made it difficult for them to positionthemselves. Their physical vulnerability, reinforced by societalperception of them as different, led them to feel like outsiders in thebroader "walking" community. All participants felt morecomfortable and validated in the wheelchair community, but even thiscommunity was inadequate because it only validated one aspect ofthemselves--their physical limitations. This is not to deny theimportance of this community--all the participants identified theimportance of peer support. However, consistent with the findings ofother researchers (that is, Reeve, 2002; Watson, 2002), it suggests that"essentializing" this wheelchair community is problematicbecause it can potentially deny other equally vital aspects of theindividual's identity. Addressing the Invisible Work of Day-to-Day Living Despite the seeming visibility of the impact of the injury, a highdegree of invisibility was associated with the work of day-to-dayliving. Most participants described their post-injury lifestyle asconsiderably less active. However, as participants described theirtypical day, the amount of work required to manage seemingly simpletasks and routines belied the impression of inactivity. First, at a time when their physical endurance had become morelimited, many ordinary daily activities became a test of physicalendurance. For example, even moving from one location to anotherrequired greater energy: "Getting around in a wheelchair is alittle bit like walking around with a 30-pound weight chained to you.You are not going to do any unnecessary actions." Moreover,seemingly unbeknownst to others, four participants quietly fought anongoing battle with chronic pain. One participant noted: "It'salways there, it's always there. I fight. I try to fight the painall day long ... Every day is a struggle, every day I deal withit." Second, considerably more time was required for planning before theperson could actually do something. This meant that spontaneity in lifewas forfeited, and "nothing is simple" anymore. Well, see I have two kinds of days now. One day where I'll sit at home and I'll take care, I'll plan the next day where I have a whole bunch of errands. Because now it's harder. You've got to plan stuff ahead. So one day I'll plan what I'm going to do the next day. Planning required more than simply determining whether a locationwas wheelchair accessible. It also required considering how to takeadvantage of this accessibility. For example, one participant describedthe angst associated with ensuring that he would be able to get backinto his vehicle parked in the parking spot for disabled people: Yeah, 'cause people don't know if they park right beside a wheelchair accessible parking and if that's a van, and if they park on the passenger side, they're blocking the lift. So I've just got to make sure that it's always on the outside. Worrying about these kinds of essentials was stressful. Noted oneparticipant, a good day is "when you're going somewhere youhave a bunch of things you have to do and you've done them allbefore so you know what to expect." This would imply that a bad daywas when the individual did not know what to expect, probably becausethe unexpected would require additional work to resolve. Seemingly taken-for-granted activities took on new meaning in thelives of these participants. For example, accommodating needs of boweland bladder control were described as a "huge" and an ongoingsource of stress by most participants. Contrasting his former lifestylewhere he would "just put my hat on and my coat and go towork," one participant spent several minutes detailing theexhaustive procedure required to have a bowel movement. Similarly,another participant nixed the notion of spontaneous sexual activity,describing instead the extensive preparations required for him to engagein sexual intimacy--increasingly, it just did not seem worth the effortto him. The work required to leave home led some participants to carefullyevaluate the need to go out. One participant noted, "I don'tnormally leave the house unless it's a must do." This wasbecause it was "a big deal, a BIG deal." It also led toquestions about the value of employment because the participantsrecognized that working consumed all available energy; there was nothingleft over for pursuing other interests or relationships. The work associated with day-to-day living appeared to be invisibleto others. This was partially attributed to others' ignorance andexcused. Until you have been in this situation, you have no idea ... because how may people actually know that because you are in a wheelchair you have to catheterize or you have to have drainage. They don't see that. They don't know that. Or bowel routines, you know, they don't know. And how could they know? I never knew. This ignorance may be maintained because many of the hidden tasksinvolved topics considered taboo for public discussion, for examplesexual functioning and bladder and bowel control. For several participants, however, hiding the effort was aconscious choice. One participant indicated: "I'm trying veryhard to normalize normalizeto convert a set of data by, for example, converting them to logarithms or reciprocals so that their previous non-normal distribution is converted to a normal one. my life so that they don't really see, or aslittle as possible, the limitations that I am under." Partially,this secrecy was motivated by the desire to protect others. More thanthis, however, through their use of language, participants conveyed theimpression that there was no legitimate way of talking about theirlimitations that was not perceived disparagingly dis��par��age?tr.v. dis��par��aged, dis��par��ag��ing, dis��par��ag��es1. To speak of in a slighting or disrespectful way; belittle. See Synonyms at decry.2. To reduce in esteem or rank. as"complaining" or "whining" as well as"pointless". Furthermore, participants were denied the right to complain becauseof the recognition that he or she could always be worse off. Oneparticipant positioned his response: "I was just glad to be aliveis what it amounted to. I came pretty close to losing it all, so Ican't really get depressed or blue about it because, you know,it's like yeah, I'm injured pretty bad, but I'm stillhere." With this perspective, the hospital room is seen as the"Taj Mahal Taj Mahal(täzh məhäl`, täj məhŭl`), mausoleum, Agra, Uttar Pradesh state, N India, on the Yamuna River. It is considered one of the most beautiful buildings in the world and the finest example of the late style of Indian compared to a pine box." Frequently, participants positioned their injuries in relation toothers less fortunate--particularly people who had tetraplegia whosesituation was "tough," "brutal," and"wicked" and "thinking how it could have been" wasone of the things used to make oneself "feel better." Seeing how people, who were way worse off than I was, were coping [meant] I couldn't whine. I couldn't complain. There was a guy right beside me that was a complete C4. And he fell four feet. ... I just totally, totally understood how lucky I was. The participants compared themselves to others less fortunate;others did as well. In this comparison, people with tetraplegiainvariably in��var��i��a��ble?adj.Not changing or subject to change; constant.in��vari��a��bil came across as "more deserving," and theimplication was that rather than complaining, one should "bethankful it wasn't worse." There was an underlying assumptionthat people with paraplegia were "low maintenance" andrequired little assistance, leaving participants to feel that theyshould be able to handle things. Two participants said this message wasconveyed to them through support services support servicesPsychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services ; a third participant could notrecall ever having a health professional legitimize le��git��i��mize?tr.v. le��git��i��mized, le��git��i��miz��ing, le��git��i��miz��esTo legitimate.le��git his difficulties. Ultimately, there appears to be a lack of validity attached to thefrustrations and work associated with trying to live with a lower bodyparalysis. This helps to maintain a silence about the difficulties theparticipants encountered. This silence results in the experience ofliving with paraplegia being particularly isolating and possibly harderto contend with: I would never want to say this as a fact but maybe [paraplegia] is more difficult [than tetraplegia] because you're more independent ... I'm not saying I ever want to be in those shoes, but you have to DEAL with things. You have to do it YOURSELF. And I don't know, maybe in some ways it is a little bit harder. [emphasis in original] Finding Balance Conflicting messages about independence resulted in the fourthchallenge associated with positioning oneself holistically: establishinga balance between relying on others and maintaining personal control. Asnoted earlier, there was an assumption that participants should be ableto cope independently. This message was clearly conveyed at the societallevel by the lack of formal support available to the participants ontheir return to the community. "What support?" queried oneparticipant, a sentiment voiced by several others. Countering this image of total independence was the reality thatparticipants could no longer do some things for themselves that theyonce had. Probably the biggest single thing that bothers me about my current condition is my ability to get my hands dirty. I can't move the furniture, my wife has to.... Or I have to make arrangements or I have to ask friends to do stuff for me now. Participants were keenly aware of the limits to their independence.Before, independence had been the assumed state. "Well before Ialways did everything on my own ... And now I find I always have to askfor help" For all, the loss of their sense of independence emergedas a devastating dev��as��tate?tr.v. dev��as��tat��ed, dev��as��tat��ing, dev��as��tates1. To lay waste; destroy.2. To overwhelm; confound; stun: was devastated by the rude remark. attack on the sense of self. Participants struggled toconnect their previous image of themselves as always capable of managingindependently with the new vision of themselves needing help. Needinghelp was always viewed pejoratively pe��jor��a��tive?adj.1. Tending to make or become worse.2. Disparaging; belittling.n.A disparaging or belittling word or expression. . Needing help compelled participants into a more interactivelifestyle; the injury "forces you to communicate more because youcan't do so many things on your own. You've got to communicateto get help" This was described as quite painful for participantswho saw themselves as "reticent," "more of a loner,"and "the type that likes to manage by myself." Also,participants worried about being seen as an imposition rather than anequal contributor in their personal relationships. And there's a lot of ... soul searching that has to go on. Cause I don't want people taking care of me ... I know one guy in particular ... and his wife's left him already. And it's not that I'm afraid of my wife leaving me, but I don't want to even create the potential for an environment where she thinks 'why should I?' Maintaining as much control in a situation as possible wasimportant for all participants. In particular, participants wanted todecide to ask for help rather than have it offered unsolicited: Actually, I don't think people should help unless I ask.... For me, I have a mouth. I can speak. I could speak before. If I needed help before I'd ask.... That's the way I feel but I think you've got to get used to it eventually. It'll soften. I don't know if I'll ever truly enjoy being offered help when I don't need it, but I think it's just a matter of time and I'll learn to deal with it. Participants were confronted with contradictory messages in theirstruggles to maximize independence. First, countering the impulse to doas much for oneself as possible was the recognition that it might bewiser to "swallow my pride" and accept help rather than riskinadvertent harm by taking on too much. Second, despite the rhetoricabout independence and autonomy, attempts to exert control were notalways met favorably. For me personally, I needed to be involved in my recovery. Not only involved, but directing it.... I want to be in the driver's seat because ... it's my car. But I also want to be informed accurately by the professionals that I'm dealing with so that the decisions I make are good ones ... And they were not happy about me taking control. No way! In other words, participants received a double message. On the onehand, reflecting dominant Western ideology about the importance ofindependence and self-sufficiency, participants struggled to avoid beingseen as dependent and therefore a burden. On the other hand, thestruggle to retain control could be interpreted by others, especiallyhealth care professionals, as problematic because it interfered with theprovision of care. Ultimately, participants were placed in a delicatebind where they were required to carefully balance enforced reliance onothers without being an imposition and still maintain a sense of controlover their lives. Nowhere was the bind of being dependent while trying to maintaincontrol more evident than in the participants' discussions abouttheir dealings with the government agency responsible for attending towork-related injuries. Participants generally felt that they had tofight to obtain services to which they supposedly were entitled and thenbe grateful for anything they obtained. And the other problem too is that you have to be really careful with fighting with them because if you piss them off, then you basically will end up being blacklisted, so you will get nothing but a hard time every time you want something. These interactions left participants feeling angry and disempowered DISCUSSION This study suggests that a critical aspect of the experience ofliving with paraplegia in the community revolves around the struggle tomaintain a holistic sense of self, inclusive of inclusive ofprep.Taking into consideration or account; including. the injury but notdefined by it. Four challenges emerged that shaped this struggle:negotiating within the medical diagnosis; contending with difference;addressing the extra work of day-to-day living; and balancing increasedreliance on others with continued personal control. These challengeswere internally perceived and socially constructed. For example,reflecting the care needs imposed by their injury, participants adopteda medicalized understanding of themselves. Although all recognized thisperspective as insufficiently inclusive, efforts to see themselves moreholistically were thwarted by a health care system that focusedexclusively on their injuries and the limitations imposed by them. This study builds on research that has begun to establish theimportance of chronic illness or disabling injury on sense of self (forexample, Brock & Kleiber, 1994; Charmaz, 1994; Fitzgerald, 1997;McColl et al., 2000; Spencer, Young, Rintala, & Bates Bates? , Katherine Lee 1859-1929.American educator and writer best known for her poem "America the Beautiful," written in 1893 and revised in 1904 and 1911. , 1995;Williams, 2000). However, supporting work by Reeve (2002), the studytakes this understanding a step further by examining the complexityassociated with the task of grounding a sense of self. Each of the fourchallenges required participants to use opposing, dichotomous di��chot��o��mous?adj.1. Divided or dividing into two parts or classifications.2. Characterized by dichotomy.di��chot storylines to make sense of their experience; in essence they were challengedto locate themselves within "and" positions rather thanrelying on more conventional "either/or" stances. This is seenmost clearly in participants' attempt to avoid being labeled, byself and others, as dependent. Rather, participants were required totease out this notion, and ideally, develop an understanding ofthemselves that could integrate both increased reliance and continuedcontrol. Participants were challenged to accord priority to theirmedical needs while downplaying them as only one aspect of themselvesand to see themselves as both the "same as" and"different from." Ideas from post-structuralism attack a conventional notion of thesense of self as a fixed, coherent, and rational subject capable of fullconsciousness and agency. Rather such a subject is"de-centered" and "refashioned as a site of disarray andconflict inscribed in��scribe?tr.v. in��scribed, in��scrib��ing, in��scribes1. a. To write, print, carve, or engrave (words or letters) on or in a surface.b. To mark or engrave (a surface) with words or letters. by multiple contestatory discourses" (Lather,1991, p. 5). Participants' stories convey the contradictions,tension, and complexities of the story lines on which people with alife-altering, disabling injury rely to create a sense of coherence sense of coherence,n a view that recognizes the world as meaningful and predictable. The coherence of a worldview may have a positive correlation to health and longevity. See also worldviews. . Indoing so their stories challenge the simplicity of pitting models forunderstanding disability against one another. A battle is being wagedbetween the medical perspective, focused predominantly on the individualbody, and a social model of disability, which understands disability asa sociopolitical construct (Harris, 2000). Supporting Williams'(1999) notion of a "critical realism For other meanings of the term realism, see realism (disambiguation). In the philosophy of perception, critical realism is the theory that some of our sense-data (for example, those of primary qualities) can and do accurately represent external " participants'stories highlight the personal constraints imposed by their bodies andthe need to recognize the importance of social context for constructingtheir experiences. Traditionally, the primary focus of rehabilitation has been onhelping the patient adjust to the spinal cord injury. The implication isthat it is within the individual's control to make the necessaryaccommodations. This study suggests that a complex interplay betweenindividual interventions and societal efforts is required. Areasidentified to develop dual interventions include facilitating a healthcare system that can accommodate a more holistic vision of the personwith paraplegia; examining notions of dependence and independence at theindividual and societal level; and increasing awareness about the workassociated with living with a disability. In day-to-day practice, thishighlights the importance of the social work role for ensuring that theperson with paraplegia is seen as more than his or her injury by theinterdisciplinary team interdisciplinary team,n a group that consists of specialists from several fields combining skills and resources to present guidance and information. ; for advocating for supports beyond basic medicalneeds, such as creative funding for vocational development; and forpromoting the rights of the person with paraplegia to have control overthe direction of his or her care plan. However, it also identifies directions for individual interventionsfocused on helping the person refine and develop his or her sense ofself in a societal context that facilitates a pejorative pejorativeMedtalk Bad…real bad self-image. Acritical goal would be to counter internalized stereotyping throughactivities such as validating the challenges associated with dailyliving, recognizing physical and structural limitations as legitimateconstraints rather than signs of personal deficiency, and challengingunspoken assumptions that inadvertently place the person in a bind.Group work with people with paraplegia after they return to thecommunity holds promise for providing a supportive environment forsocial empowerment; however, the challenge is to facilitate a sense ofcommunity while avoiding a tendency to consider the disability as theonly source of identity (Reeve, 2002; Watson, 2002). This study introduces important ideas and identifies areas forfuture research. All participants in this study were white men with aWestern cultural orientation with a dominant discourse towardindividualism and control. An important area for study would be toconsider whether these are the same issues for women and members ofnondominant cultures where community and relational context may be morevalued than autonomous individuality. Moreover, participants were seenrelatively soon in their transitional process; it would be useful tounderstand how they contend with the tension and contradictions overtime. REFERENCES Alvesson, M., & Skoldberg, K. (2000). Reflexive (theory) reflexive - A relation R is reflexive if, for all x, x R x.Equivalence relations, pre-orders, partial orders and total orders are all reflexive. methodology.Thousand Oaks Thousand Oaks,residential city (1990 pop. 104,352), Ventura co., S Calif., in a farm area; inc. 1964. 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Towards a common language forfunctioning and disablement: ICIHD-2: The international classificationof impairments, activities and participation. Geneva Geneva, canton and city, SwitzerlandGeneva(jənē`və), Fr. Genève, canton (1990 pop. 373,019), 109 sq mi (282 sq km), SW Switzerland, surrounding the southwest tip of the Lake of Geneva. : Author. ABOUT THE AUTHORS Deborah L. O'Connor, PhD, RSW RSW Registered Social WorkerRSW Resistance Spot WeldingRSW Renegade Soundwave (band)RSW Royal Scottish Society of Painters in WatercolourRSW Refrigerated Seawater (fishing industry), is associate professor, Schoolof Social Work and Family Studies, University of British Columbia LocationsVancouverThe Vancouver campus is located at Point Grey, a twenty-minute drive from downtown Vancouver. It is near several beaches and has views of the North Shore mountains. The 7. , 2080West Mall West Mall (Chinese: 威城) is a shopping centre located in Bukit Batok, Singapore.Opened in 1998 to provide “All-in-One Shopping & Entertainment Experience For The Family”, West Mall is a successful and established shopping mall located at Bukit Batok , Vancouver, BC, V6T 1Z2; e-mail: deborah.oconnor@ ubc.ca.Jenny M. Young, MSW (MicroSoft Word) See Microsoft Word. , RSW, is patient services manager, and MeganJohnston Saul, RSW, is a social worker, Spinal Cord Program, G. E StrongRehab Centre, Vancouver, BC. This project received funding from aVancouver General Hospital Vancouver General Hospital (VGH) is a medical facility located in Vancouver, British Columbia. VGH is part of the Vancouver Hospital and Health Sciences Centre (VHHSC) the second largest hospital in Canada. research grant. Original manuscript received July 1, 2002 Final revision receivedAugust 29, 2003 Accepted November 19, 2003