Illness, Work and Organization: Postmodern Perspectives, Antenarratives and Chaos Narratives for the Reinstatement of Voice

Vickers, Margaret H

ABSTRACT

This paper explores the possibilities that exist when the affirming aspects of a postmodern perspective are utilized to reinstate the voice of marginalized organizational members. Stories, specifically antenarratives (Boje 2001), are shared as fragments depicting difficult and disordered lives of working people with unseen chronic illness. Heideggerian phenomenology is introduced as the methodological and philosophical vantage point for a study where antenarratives have been sought to illustrate the postmodern working life of sick people. Boje's (2001) work with antenarratives, Frank's (1995) work with Chaos Narratives and Baudrillard's reflections on the simulucrum and the end of reality are drawn upon to illustrate the postmodern existence of life and work with an unseen chronic illness. It is hoped that Flax's (1990) ideas about thinking in fragments, and the need to stay engaged with the difficult questions, will allow organizations to move toward being places of acceptance of diversity, openness to multiple voices, inclusion, flexibility and respect - the just workplace.

A POSTMODERN PERSPECTIVE TO REINSTATE VOICE

The aim of this paper is to give voice to an "invisible" and marginalized group in the workplace in an effort to improve understanding and seek organizational justice. I attempt to reinstate voice using the postmodern recognition of disorganization, untidiness and fragmentation to try and interpret, understand and respect these people's experiences. While it is acknowledged that not all aspects of the postmodern turn are useful or positive, like Boje (1995, p. 1004), I believe that some of the affirming postmodernist assumptions enable us to move beyond exploitation, discrimination and abuse, by framing conceptions of organizations in non-patriarchal terms so that we may shift the focus back to equality, democracy and multiplicity.

The "invisible" group of people I speak of are those with unseen chronic illness (Vickers 2001). A chronic illness is an ongoing condition, which may be physical, emotional or cognitive. It may or may not be treatable or curable (Vickers 1995; 1997; 1999; 2001). An unseen chronic illness is one that entails all of the above characteristics but also combines the attributes that Goffman (1963 p. 65) ascribed to invisible stigma: a condition that is not perceptible, not noticeable or evident to others. In short, it is a condition unseen by others that may arise from disease, disability or injury (Vickers 1995; 1997; 1999; 2001), and one that may result in profound problems for the bearer. Examples may include various forms of cancer, HIV, multiple sclerosis, depression or heart disease. There are many more.

A postmodernist perspective offers much to one concerned with multiple voices, multiple realities and one endeavouring to somehow incorporate and understand multiple positions (Gergen 1991, p. 85). The postmodernist sensibility of disorganization, untidiness and flexibility (Hassard 1993, p. 115) lends itself well to endless unanswered questions and lives filled with "wicked" problems (Rittel and Webber 1973, p. 160; Harmon and Mayer 1986, p. 9). I am reminded of 'the existentialist view [where] there are always loose ends' (Macquarrie 1972, p. 13), lives that are incomplete and fragmentary. These are work lives that are not easily contained or containable with the usual universal and normalizing categories of "being" an organizational member.

'Critical postmodernism' (Agger 1992; Boje, Fitzgibbons and Steingard 1996, p. 64) provides a useful vantage point and an anchor for analysis of dissonant voices and endless, unanswerable questions. Aspects of the critical postmodernist standpoint (Boje, Fitzgibbons and Steingard 1996, p. 64), particularly the recognition of heterogeneity and multi-dimensionality, prove helpful when interpreting stories replete with ambiguity, conflict and discontinuity. Critical postmodernism begins with everyday experience and discourse, including its own (Agger 1992, p. 278). Additionally, it enables the application of postmodernism in a useful way, through suggesting the need for organizations to find new ways of working and thinking in a postmodern age (Boje, Fitzgibbons and Steingard 1996, p. 64; own emphasis). I recognise and share the need to seek complexity (Tal, 1996 p. 22, my emphasis). Postmodernism embraces heterogeneity, while questioning many of our rationalist, modernist assumptions. One such flawed assumption - under close scrutiny here - is the notion that if you look well, you must be well. Indeed, the central research question is: How do organization members cope with that which they must bear but which others may not see?

I commence with a discussion of the value of stories - especially antenarratives - in organizational life. I then introduce readers to Heideggerian Phenomenology, the methodology and philosophy of choice, explaining why Heidegger's philosophical and methodological approaches were so apposite for this study. The analysis commences with a brief introduction to issues surrounding unseen chronic illness and, as the analysis unfolds, varying aspects of the postmodern sensibility are used to situate and contextualize (but not necessarily explain or normalize) the stories shared. I include examples of Boje's Antenarratives (2001) and Frank's (1995) Chaos Narratives, as respondent experience is interleaved with researcher story, postmodern theoretical perspective and interpretive analysis, in an effort to contextualize, vivify and reify the experiences shared. Stories that are discursive, chaotic and, at times, terrifying are presented. They are not neat or ordered. Some even serve to depict Baudrillard's notion that the border between art (the image that is created) and reality (the life that is lived) has utterly vanished. The stories encapsulate the resultant surface effect, an image, a reflection of the life lived, and the chaos and torment experienced.

Traditional organizational discourse constructs itself through many silences, many absences. Thankfully, recent recognition and discussion of such non-mainstream concerns as sexuality in the workplace (for example, Hearn et al 1989; Williams 1992, p. 45; Garner 1995; Sinclair 1998), homosexuality (Woods and Lucas 1994), sexual harassment (Kind 1997), violence and abuse (Linstead 1996), emotions (Hochschild 1983; Fineman 1993; Parkin 1993; Fineman 1996), soul (Briskin 1998), and sensemaking in organizations (Weick 1995), have been important steps taken to move organizational analysis away from its image as a grey collection of managerialist typologies (Parker 1992). However, as Linstead argues, organizations still tend, when confronted with the incomprehensible, to have just two solutions: incorporation or expulsion (Linstead 1996, p. 58). I explore a third possibility: greater understanding. This paper is not about postmodern forms of organizing and administering (such as have been discussed by Clegg 1990). A postmodern view is sought to assist understanding of aspects of humanness that are frequently trivialized, under-estimated and under-rated in organizational life.

STORIES, NARRATIVES AND ANTENARRATIVES

Stories are important in shaping the course and meaning of human organization, although not many have recognized the importance of the link between stories and organization (Boje 1995, p. 1001). Stories allow us to recognise both the similarities and the unique aspects of life in organizations. Organizations and organizational life are a multiplicity, a plurality of stories and story interpretations in struggle with one another (Boje 1995, p. 1001). Stories are also evidence of 'micro-practices' in organizational life that reflect the spontaneous, aggressive and expansive as well as the countervailing, taming and remedial (Boje 1995, p. 1002).

Narrative is the fundamental scheme for linking individual human actions and events into interrelated aspects of an understandable composite (Polkinghorne 1988, p. 13). I use the term narrative here as Polkinghorne (1988, p. 13) has done: to refer to the process of making a story, to the cognitive scheme of the story, or to the result of that process. We know that, when constructing a story, people ordinarily explain their own actions and the actions of others by means of a plot (Polkinghorne 1988, p. 21). Why we do things tends to be explained by events in our histories that effect our actions. Complex sets of events including reflective decisions can explain an event by tracing its intrinsic relations to other events and by locating it in a historical context. Narratives exhibit an explanation instead of demonstrating it (Polkinghorne 1988, p. 21; my emphasis). Narrative understanding, then, is the comprehension of a complex frame of events, by seeing the whole in which the parts have participated (Polkinghorne 1988, p. 22). However, I choose the stories presented here because they don't always show the whole, a coherent plot, careful reflection or any kind of explanation or solution.

Unfortunately, stories (as opposed to narratives) tend to be viewed as being somehow less than traditional narratives, especially when lacking a plot and coherence (Boje 2001, p. 1). I wish, instead, to offer them as theoretically and substantively valid contributions to knowledge. Boje (2001) characterizes fragmented stories as antenarratives. Antenarratives are stories that are non-linear, incoherent and unplotted (Boje 2001, p. 1). Antenarrative is never final, never complete, but gives attention to what is going on, the sense of the lived experience (Boje 2001, p. 3-4). Postmodern antenarratives encourage the possibility that there may be no full narrative to tell, only fragments that may never come together coherently (Boje 2001, p. 5). Finally, of importance here, is the recognition that story tellers are always in the middle of living their storied, non-linear, fragmented and polyphonic lives (Boje 2001, p. 5). It is hoped that this recognition of fragments of lives will assist in organizational understanding.

HEIDEGGERIAN PHENOMENOLOGY: THE IMPORTANCE OF PHILOSOPHY AND METHODOLOGY

I include a section here about Heideggerian phenomenology because of the central part that this methodological and philosophical perspective played in this research project. My intimate knowledge and experience of the phenomenon under review, through having an unseen chronic illness, required me to find a philosophical and methodological approach that enabled, even encouraged, my life experiences to be included in the research process. Heideggerian phenomenology is distinct from many other qualitative research methodologies in that Heidegger articulated the position that presuppositions that the researcher holds should not be eliminated or suspended (bracketed) 'but are what constitute the possibility of intelligibility or meaning' (Ray 1994, p. 120). There was, during this study, no attempt to "bracket" my beliefs or experiences (a notion supported by Schutz 1932/1967; Oiler 1982, p. 179; Ornery 1983; Swanson-Kauffman and Schonwald 1988, p. 98). The interpreter is required to be aware of their own prejudices, but they should not be bracketed or alienated during interpretation (Walters 1996, p. 97). Heideggerian phenomenology is an interpretive and ontological exposition, rather than merely a descriptive one, with the understanding of the experiences of each individual on their own terms being the fundamental objective. Here, my background, my fore-structures of experience, my pre-understanding was unquestionably influenced by my own unseen chronic illness - multiple sclerosis. Indeed, the study was commenced in direct response to my own shattered life and need to cope at work with a chronic illness that others could not see. What follows, then, are interpretations of my stories and theirs from a postmodern perspective.

Heidegger's view, that sociological factors cannot be separated from the respondent's (or the researcher's) life, are highlighted when one examines a central Heideggerian assumption: that one must always do hermeneutics from within the hermeneutic circle (Dreyfus 1991, p. 4). The inescapable constituents of this are background, pre-understanding, co-constitution, and interpretation. Background refers to a person's history or background as determined by their culture from birth, which tends to influence meanings, skills and practices. Pre-understandings (or fore-conception) refers to the meaning and organization of a culture (including language and practices) which are already in the world. Co-constitution refers to the philosophical assumption that the person and their world is indissoluble, meaning that we are constructed by our world while, at the same time, we construct our world from our own experiences and background. Finally, for Heidegger (1927/1962), nothing can be encountered without reference to the person's background understanding, their "historicality" (Koch 1995, p. 831). Use of phenomenology should be a philosophical and a methodological approach (Street 1996, p. 48). Given that I was an insider to the phenomenon under exploration, it was imperative that I be able to explore and include my frameworks of experience while undertaking the research. Indeed, it was my own recognition of my "postmodern" existence that first drew me to consider this analysis.

Method

It is not unusual to see Heidegger's phenomenology utilized as a mode of capturing stories about illness (see, for examples, Leonard 1989; Sass 1990; Koch 1995). What is new here is the use of Heideggerian phenomenology combined with specific story telling modes of analysis. The presentation of stories as antenarratives allowed me to be unconcerned about the linear plot being missing. This is a story of research into other people's organizational lives that can be viewed as the coproduction of a new synchronie (existing at one point in time) story formed by successive encounters between researchers and subjects powerfully influencing the construction of each other's stories (Boje, Luhman and Baack 1999). The sharing of these chunks, from both respondent and researcher, enables a multi-voiced way of telling stories and sharing life experiences designed to leave the reader free to try and put the pieces together or to just 'leave the narrative wreckage where it lies' (Boje 2001, p. 9). Retelling stories about research encounters is a collective process between multiple participants. The various authors of the story presented here have had varying power to select whose story fragments will be included (Boje, Luhman and Baack 1999). As Boje and colleagues have sought to do (1999), my purpose is to engage in non-traditional research by raising postmodern organizational theory issues through a more synchronie and polyphonic write up of the qualitative research undertaken.

Other authors have introduced their voice into qualitative studies with excellent results (see, for example, Bochner 1997; Smith 1999) and it is increasingly being recognized that the voice reporting qualitative work can be the voice of a situated author with a story to tell (Van Maanen 1998, p. xxiii). I have elsewhere included some of my voice in the research outcomes (see, for examples, Vickers 2001; 2002a; 2002b) although it is recognized that it is still the researcher 's voice that is often the least powerful in an academic write-up (Boje, Luhman and Baack 1999). Here, I have included my voice to depict polyphonic snippets of a tremulous sense of uncertainty, fragmentation, and ambivalence - the postmodern existence of living and working with an unseen chronic illness.

Phenomenological researchers usually immerse themselves in the data and present the phenomena as an illustrative narrative (Osborne 1990, p. 85). The data collection used here involved numerous in-depth interviews, which were transcribed verbatim and much of this data has been presented elsewhere (see, for example, Vickers 2001). During the analysis and gathering of those interviews, I was also recording my own field notes. When reconsidering the data from a postmodern perspective, I found Boje's (2001) work on antenarratives especially liberating in allowing my multiple roles as insider to the phenomenon, researcher and storyteller to be acknowledged. Readers will discover my story interleaved with that of the respondents, helping to create an antenarrative network, showcasing a crowd of voices, depicting fragmented lives lived. Other writers who have influenced the postmodern turn (such as Jameson, Lyotard and White) have also preferred to privilege the many local microstories over one grand narrative or macrostory (Boje, Luhman and Baack1999). The micro stories presented are, in some form, a spectacle, where the juxtaposition of various voices, quotes and narrative interpretations combine to present a polyphonic text. The prospect of the carnival scene allows for a split text (Boje 2001), first, when researcher and respondent take turns to address the issue at hand (Boje 2001) and, second, when the author shifts role and perspective from interpreter and analyst of other people's stories, to storyteller and insider sharing her own. This is not the traditional comparative interpretation where the researcher has ultimate and undisputed authority, but a text where the author is very much part of the scene (Boje 2001, p. 776). As you will see, the production of this manuscript, the choices of respondent and researcher texts, and the placement and inclusion of either (and both) for a particular reader, have been heavily influenced by this carnivalesque quality that Boje refers to. The text presented here interweaves many voices and conventions - a plural text-that, hopefully, delivers some temporary agreement, here and there (Boje 2001, p. 77-78). It is also, importantly, a confirmation that there is never one, whole story, except in a hegemonic sense, where one party or group imposes their story onto another (Boje, Luhman and Baack 1999).

ILLNESS AND WORK: SHATTERED LIVES, FRACTURED VOICES - A POSTMODERN EXISTENCE

I have attempted here to harness some of the positive, affirming and justice seeking aspects of the postmodernist milieux, such as recognition of the phenomenon of multiphrenia (Gergen 1991, p. 73-74) and the search for instabilities (Hassard 1993, p. 123) as I interpret the stories that follow. As Farmer (1998) assures us, aspects of the postmodern turn enable us to realize that our intellectual grids are deficient, and it is this recognition that is sought.

The Death of Certainty

For the postmodernist, the notion of predictability is a theme to be torn down. For people with chronic illness, a life of predictability is likely to be a distant memory. What remains, instead, are lives, relationships, and bodies that cannot be relied upon. Life and work for people with invisible chronic illness is frequently unpredictable, turbulent and poignant (Vickers 1998). The response from sick people to these challenges is frequently irrational, unpredictable, and contradictory. There is no wrong or right way to handle such problems and, frequently, no way to plan for interruptions to normality. Readers may find themselves either striving to resolve contradictions or, alternatively, left with an enigmatic experience (Boyne and Rattans! 1990, p. 7).

I commence with my own reflections on the unseen nature of many chronic illnesses made early in this research project, including references to "appearances", the inappropriate judgements of others, and the uncertainty of future lives and abilities, central themes in this research:

Another excellent bottle of chardonnay is opened. It is about 9.30 pm on Saturday evening and I sit back contentedly after dinner, enjoying the company of my beloved husband and dear friends. Whilst the others chat happily, I withdraw within, momentarily, and reflect. A newcomer to this party would never know, judging by appearances alone, that any of us had any health problems. After all, we all look particularly well, some would say in the prime of our lives. We are all aged between 29 and 41 years.

We are all far from "well"...

My husband Michael has sarcoidosis, a particularly rare systemic condition, which is currently affecting his lungs ... effecting shortness of breath, tightness in the chest, frequent coughing and fatigue. Since having this condition he has also been experiencing inflammation of the joints, resulting in pain in his hands, shoulders and hips. This arthritic pain, whilst not jet debilitating, indicates a future of uncertainty. Michael regularly has his eyes checked, as blindness can also result from sarcoidosis ...

I have multiple sclerosis (MS). I live with recurrent periods of overwhelming and inexplicable fatigue; visual problems; bowel and bladder disturbances; balance and coordination difficulties; and numerous phantom-like, intermittent, sensory symptoms. I have, in the past, experienced more acute disease episodes, which have seriously (and fortunately, temporarily) affected my vision, giving me double vision for one period and blurred vision during another. I have also had problems with my hearing, balance and coordination, even a period of hemiplegia [paralysis to one side of the body], which !faced at the tender age of twenty one... (Vickers 2001, p. xii- xiii).

A postmodernist existence is depicted here: the varying list of symptoms and difficulties experienced by myself and my partner, the juxtaposition of chronic and acute episodes of illness, an overwhelmingly uncertain future for both of us and, importantly, that no-one can see that either an illness or its associated troubles exist. So little has been learned about what we cannot see. The constancy and primacy of the visual senses remains the basis for justification and assumptions of "truth" (Vickers 1997; 2001). That antiquated claims of external physical appearances corresponding with internal psychological and moral predispositions (Finkelstein 1991, p. 42) survive is testament to the naivety and the crudity of our sociological processes (Vickers 1997). Beverley also commented that no-one would know she has multiple sclerosis (MS) without her telling them. She confirms my own experience; that others do not notice the myriad of variable and unseen symptoms experienced:

Beverley: No. Most people would not know. I mean they wouldn't. If I say to them, "Oh, I've got MS", they say, "Oh. You're kidding. Have you? Oh. Oh." You know, because things are never noticed (Beverley #2, p. 2).

Similar misconceptions apply when regarding people's state of recovery. Linda confirms a continuing, simplistic and flawed reliance, on the part of colleagues, on one sense, one dimension as she shares her experiences with life-threatening breast cancer:

Linda: I haven't even gone twelve months clear jet and I mean they don't give the all clear until five years ... I think they all think, "Oh, she's fine now. She's had her treatment. She's okay. She's back at work. She's moving. She's upright" (Linda #1, p. 10).

Stemming from these distortions is a lack of understanding from colleagues. For Linda, colleagues apparently have little idea of, or concern for, the ongoing worry she experiences, or the pain and the grief she has so far experienced since her initial symptoms of breast cancer. She shares her feelings about being "judged":

MV: You mentioned ... that other people judge you ... Can you explain that?

Linda: I just feel that like -. I felt when I had the seven months off, people were thinking and I know they were thinking, I just know in my own mind that they were thinking, "Why does she need seven months off? She's having a holiday." I mean even a couple of people said... "Oh, where have you been for seven months?" and you say, "Oh, I've been really sick you know" and you go into it and they say, "What did you have?" and I say, "Cancer." Then they say, "Oh. Do you need seven months off for that?" and 'You must have had a good holiday then. " Andyou think, "Bloody hell, it's not a holiday. I'm trying to get over it!" (Linda #1, p. 7-8).

Similarly, for June, visual problems associated with glaucoma are not recognized: a colleague's ignorance and disbelief is especially irritating when combined with the physical frustration of not being able to see properly:

June: I don't think this guy, who I've known for some years really, he probably doesn 't know about my glaucoma. Because he knows I've got glaucoma but I don't think he knows what glaucoma is or how it's affecting me. He keeps on saying, "Well, put jour glasses on." And I'm saying, "But it doesn't make any difference." So, every time I see him he says, "Glasses that don't make any difference " and shakes his head. Yes, so, and I feel a bit irntated. I don't know if irritated is the word but, yes, I felt a bit annoyed that he -. I didn't want any sympathy or empathy or anythingfrom him. I just wanted him to recognise the fact that the glas ses don't make any difference and, yes, I do have an eye problem and that I could lose my eye sight... Yes, you know, I didn 't want that sympathy. I just wanted him to recognise that fact, and I did actually say to him, "Dave, I can't see"... So, probably what will happen, if I end up having to go into hospital, he will then realise and then - he's a really lovely guy - and he will then probably be beside himself. But there is no way I can actually make him realise because I'm doing normal things. I mean I'm driving.

MV: He sees you driving and working?

June: Yes. So he doesn't-. And be sees me with glasses on sometimes, sometimes without (June #1, p. 12).

Heterogeneity, Fragmentation and Difference

Postmodernism holds a self-proclaimed commitment to heterogeneity, fragmentation and difference (Boyne and Rattansi 1990, p. 9). Postmodernism turns away from homogenizing principles: there is an affirmation of difference, of heterogeneity (Siebers 1994, p. 20-21); an acceptance of 'heterotopia' (Connor 1989, p. 9; Siebers 1994, p. 20), the impossible catalogue that makes no sense anywhere else (Connor 1989, p. 9); a heterotopia of mixed places and themes (Siebers 1994, p. 20). It is a turn towards an undoing of traditional thinking, a questioning of assumptions and recognition of uncertainty (Farmer 1997, p. 112). Postmodernism makes explicit 'the possibility that as many interpretations of the world are possible as there are people' (Hummel 1997, p. 21) - of vital import when listening to divergent voices. It is recognition of incommensurability, of otherness, of alterity, singularity, difference and plurality incorporated in a mood of 'deconstruction, destabilization, rupture and fracture - of resistance to all forms of abstract totality, universalism, and rationalism' (Bernstein 1991, p. 57; emphasis in original). In a postmodern world of complexity and diversity, divergent solutions (and explanations) are necessary in order to go beyond technical and instrumental thinking (Jun 1996, p. 116). Postmodernism is an acknowledgment that real knowledge should be sought from a variety of perspectives (Farmer 1997, p. 116) - not just those "healthy" ways of knowing lodged in the official enlightenment.

For those with unseen illness, life is destabilized, uncertain and fractured. The following passage from Linda exemplifies the uncertainty, complexity and fracture of her life with breast cancer. The extract was typical of many of Linda's responses - rushed and discursive, but authentic and sincere, revealing of the differences in her life that others were so unaware of. Note the repeating and ambivalent focus on how well she looks, as well as the shift in her story from the fearful to the positive. Here, she is describing her working life after a diagnosis of breast cancer, a full mastectomy and subsequent chemotherapy:

Linda: So, I went back to work after "chemo", full time, and everybody said, "Oh, you look really well." 'That's the hardest thing, because, okay, I look well but, you know, I am still pretty sick and I have got a life-threatening disease. It's not, you know, just the flu or something. It's something that is life threatening and, you know, it is really scary because I was diagnosed when I was 26 so, you know, it is still pretty young. There have been people, a lot of people that are younger even. There's been like 16-year-olds and 18-year-olds diagnosed with it. So -.

MV: How do you feel when people say, "You look really well"? How do you feel when they say that?

Linda: I react. I always say, "Well, yes, that's what cancer is. Like you look okay but, you know, it's basically eating away at you, inside of you, which is really scary." And actually somebody asked me that today. They said, "Oh, you're looking really well" and my reaction today was, "Well, I am feeling really good." Like, it's the first time in a long while probably, because I've been back at work since early January. Because I had seven months off ... so I've been back at work since the second of January and like that was really, you know, a big milestone to get over, because having all that time off and just thinking, "Well", you know, "What's going to happen now?" sort of thing. It's always, you know, every day you wake up and you live cancer basically, every day. You think, "Oh dear. Oh, what's today going to be?" (Linda #1, p. 3).

I know how frustrating, angering and trivializing it can be when others repeatedly reinforce how well you look. Note Linda's shift from fear for her life, to comments about looking good and feeling good, through to the routine consideration of her uncertain future. The conflictual and ambiguous nature of her story indicates the tumultuousness of existing with a chronic condition. A postmodernist perspective allows the reader to better share the experience. On the surface, the respondent's story appears to portray one view, which often shifts as their story unfolds, indicating the fragmented nature of existence. Their narrative may also demonstrate a conscious wrestling with issues for the first time. When I asked Shelley, who had Leukaemia, whether she would disclose her illness at work, she responded initially:

Shelley: I don't tell anybody because I guess they don't have a need to know. I fee I they don't need to; it doesn't make me any different a person and I've found that in a lot of ways people tend to treat you differently if they know (Shelley #1, p. 3).

and, yet, moments later she admitted:

Shelley: I guess in a way they had a right to know if one of their staff, I mean we all work as a team so, in that respect, maybe -. It's probably better that they did know so that when I came back [from hospital] they were aware, to sort of help me with things that I couldn't do. The lifting and stuff like that (Shelley #1:4).

This theme of ambivalence, fracture - a heterogenic life - was a regular feature in the stories - mine and theirs. As my husband's illness worsened, mine did too. It is no accident that themes of ambivalence and fear resonated with me. I recall having to visit my neurologist as my own symptoms worsened. Like Linda, my own story shifts from the negative to the positive, as I tried to cling to some sense of normality:

As I continue working on my thesis, my own invisible chronic illness (multiple sclerosis) increasingly presents problems ... Finally, last week, I admit defeat. Both of my feet are without feeling my right hand is feeling strange, thick, as if it doesn't belong to me; and my speech is becoming increasingly tortuous and jumbled. If I continue to ignore this any longer I will shortly not be able to drive the car or sign my own name; reasonably important functions in most people's lives, mine being no exception. There is no guarantee of resolution but I guess I really should see if anything could be done.

A brief consultation with the Neurologist confirms that treatment is recommended. A "pulse" of Prednisone will be administered intravenously as an outpatient at the hospital. My questions to the neurologist about the likelihood of side effects are met with a definite response: 'You shouldn't experience any problems.' I ask, 'Can I still work?' The reply, 'Oh yes'...

Well, the rather euphemistically named "pulse" of prednisone actually had one or two short term ramifications as well. Since commencing the treatment at the hospital, I have been extremely nauseous, turned yellow, then grey, felt significant pain all over my body, and had palpitations and hot flushes. My face has swelled up like a balloon (as, to my dismay, did the rest of my body), and I have been unable to do anything that meant remaining awake or getting out of bed. As the days passed I also saw my vision go blurry and my thought processes becoming increasingly fuzzy. Stringing a coherent sentence together has become something of a challenge. I also noticed an uncharacteristic aggression for the days following the treatment and what I could only describe as general and complete debilitation...

As I write this, however, the first concentrated effort I have managed since entering the hospital five days ago, I can feel my toes, intermittently, for the first time in six months. I feel an irrepressible and ridiculous sense of optimism (Vickers 2001, p. 72-73).

Discursive Stories - Chaos Narratives

The Chaos narrative imagines life never getting better (Frank 1995, p. 97). The teller of the chaos story is not heard to be living a "proper" life. The modernist bulwark of remedy, progress, and professionalism cracks to reveal vulnerability, futility, and impotence (Frank 1995, p. 97). We are reminded just how easily any of us can be sucked under. A postmodern perspective also recognizes this absence of neatness, predictability and linearity. Hummel (1997, p. 25) reminds us that we undertake our most ordinary activities with no particularly precise sense of location in time and space. Similarly, storytellers with unseen illness shifted in time when telling their stories, revealing a perspective on the past which may be, for them, disjointed, discontinuous and fractured - at times frustrating the listener's attempts to follow it. Their storyline was frequently discontinuous, disordered and incomplete. However, if the modernist notions of coherence and order are no longer insisted upon, one may be left with an acceptance of inconsistency and disorder; a revised expectation that incoherence and inconsistency have epistemological value and may actually be aesthetically pleasing in their own right. June's attempts to share an orderly, neat description of her life since a diagnosis of glaucoma foundered on a discontinuous and fractured storyline. Nevertheless, careful reading of the following passage unveils some of the key issues of concern to her. Most rested on her uncertain future, especially her need, as a single mother, to continue working given the anxiety and the day-to-day difficulties her visual difficulties and prospective blindness were presenting for her:

June: Well, since then [seeing the doctor and getting a diagnosis] I've had three operations to keep the [ocular] pressure down. And I've had laser treatment, so the -. Keeping the pressure down lasted for a short period of time. I think it lasted - August - I think actually it lasted probably twelve months with putting more and more drops, and different types of drops. I've ended up putting three different types of drops in my eyes every four hours. I was really waterlogged and then he said I'd have to, I needed laser treatment or an operation. And I really panicked then ... I don't think I'd had laser at that stage but I was on [a drug] and it was sort of the end of the road. There are drops where you can't see for about an hour. I mean you have blurred vision. Well, not everyone has it, I mean but I got this excruciating headache, everything just pulled tight and that lasted for about an hour until I would start to see again, which caused all sorts of problems because I then had to work out when to put my eye drops in so I could drive to work. And I mean, I could see enough. It was quite blurry, but you could see enough to get around it at work. But because it was both eyes, I had to sort of organise my day and my eye drops in order to be able to go to work, because I'm paying off a mortgage and I had two children in private schools. I needed to work (June #1, p. 3).

The chaos narrative conveys the feeling that no one is in control (Frank 1995, p. 100) - a central feature in my recollections of my own troubles at the time and in the stories that I was collecting. The chaos narrative is always, at some level, lacking in speech; it is beyond speech. Fred describes his experiences with cancer treatment and, in particular, the experiences of two of his colleagues who also had cancer- Beryl and Peter. His discussion was prefaced by my questions as to whether he found it comforting to talk to others about his own ordeal with cancer:

MV: OK, so there were the three of you that all had this, and you talked. So, dare I ask, how did you feel when the fellow with the bone cancer passed away?

Fred: Oh, I feel very sad for Peter, but you could sort of see it. I was lucky. Why, I don't know. The same as Beryl. Beryl, you know, the doctor said the same thing with her. She was very, very lucky as well, you know. Poor old Peter, you know, everything sort of came on him out, sort of, out of nowhere, sort of thing. You know what I mean, and he was being treated for, oh God, he was having chemotherapy actually, which is pretty rough stuff. But nothing seemed to have been working. And I had a feeling then, you know, he just kept on saying, "Well, they've given me all this treatment and nothing's happening. And I seem to be gettingpains over more parts of my body than where I had it before," and all this and I thought, "Oh jeez." You know, you sort of, when I was in, when I was getting radiotherapy, you go in every day and there's a room. You have about [pause, deep exhale] fifty or sixty people in there every day, doing the same thing. Everyone had cancers. Women, kids, boys, girls, men, young, old. Look honestly, no discrimination, you know? Little babies. And you saw all these people with these red crosses over them, you know what I mean, and that's where they were getting gapped with the radiotherapy, or whatever, because they all had cancers, whether it was brain tumors, or throat, you know, all over the place. And [pause], and you get to tell the ones that are not going to be around for, for too long, because you could see it in the color of them. You know, they just go a shocking yellowy type of color. And you go in there and all of a sudden you don't see them there, and the nurse will say, "Oh look, so-and-so, blah blah blah, she died, or he died, or whatever". The saddest part was little kids that never really have the opportunity to live. And that was the hardest part, you know.

MV: Did you dwell on that, when that sort of thing happened? Did you think about it?

Fred: Oh, I always thought, you know, that possibly, "I'm going to be next, or -", you know. I think everyone felt the same way, because we'd sit around and have a chat in the hospital as well, and you'd think "Oh, God." You know? (Fred #1, p. 19-20).

Readers should be aware at this point that, whilst Fred (with lung cancer) did survive, Linda (with breast cancer) and Shelley (with acute lymphoblastic leukaemia, both discussed earlier in this manuscript) did not. I consider my own state of mind during analysis. My own illness, and that of my husband, had continued to worsen. I recall one particular day writing a file note, just as I was informed of Shelley's impending death. I wrote:

The dark hood of melancholy once again envelops me - slowing me, constraining me, bringing unimaginable loneliness. As I consider my life, I feel hollow, empty, numb. What seems to have sparked this particular episode of depression (among the many) is that I have just learned from a routine, three-month, blood analysis that my liver enzymes are all higher than normal... This cruel paradox presents itself during another hour of bleak reflection: the only current preventative treatment available for people with MS (which, for me, is currently heading downhill like a runaway train) that is considered to have any positive effect on slowing the progression of the disease, is now effecting other, previously healthy parts of my body ... I exist now. I do not enjoy, rarely feeling anything but a hollow, emptiness. I record another day of unhappiness; another spoke in the wheel carrying me down, but where? ... I don't tell anyone how I feel. I doubt anyone will really understand or care for that matter. I just want to run away - hut where would I run? There is no-where to run, no-where to hide from all this stuff.

I cry a lot.

My thoughts are interrupted and the tears are hastily brushed away. I take a phone call from one of the intermediaries from the study: Shelley is not going very well. 'She is the classic "invisible" chronic illness' he says. 'She looks fine, but she is dying'...

I am crying again. Michael thinks the tears are for her. The tears are for me; for my pain, my fear, my loss. Not hers, not his - mine! (Vickers 2001, p. 132-133).

It is little wonder that I focused on Fred's concerns here: My husband had retired permanently from work aged 43 and had been told by his Doctor to "get his house in order". Alongside that, my own health and level of ability had deteriorated markedly, including what appears, with hindsight, to have been a lengthy period of depression.

Some Use for the Simulacrum?

Baudrillard's extreme postmodernist view is that the border between art and reality has utterly vanished, having collapsed into the universal simulacrum. The simulacrum is arrived at when the distinction between representation and reality breaks down. One is left with a surface effect - an end of reality - a reflection of basic reality (Appignanesi and Garratt 1995, p. 54). "Reality" becomes redundant (Appignanesi and Garratt 1995, p. 55). The postmodern view looks to and accepts the pervasiveness and significance of images. Research into life and work with invisible illness has confirmed that much of our supposed understanding of "reality" is, in actuality, simply an image of reality - people who look well may not necessarily feel well or be well. The notion that seeing is believing (Fitzgerald and Paterson 1995, p. 14) is confirmed as erroneous. Consequently, the quest for an authentic existence (Macquarrie 1972, p. 206) is especially difficult for those with illnesses that others cannot see. For them, everyday being-with-others is inauthentic and symptomatic of their especially distorted social relations (Macquarrie 1972, p. 118). June confirms:

MV: What do you think is the biggest problem for people with invisible conditions?

June: Probably expectations that people put on you and you've got to explain. People expect you to be able to -. Because you look normal, people expect you to be able to do things the same as what they can do. It's sort of, "I can't be bothered to explain " and I don't think they understand anyway, and I don't expect them to understand it. So, it's that trying to say, "Well, I can't drive at night. I don't see so well. I really can't attend that function ... " (June #1, p. 17).

For people with illness that cannot be seen, life is arguably a series of false reflections: images portrayed of lives and capacities that are not necessarily real. Paradoxically, many of the problems they experience exist because they are not discussed, not understood and not seen - but they are real. Rosalie's experiences with chronic fatigue syndrome reveal her working life as a series of false reflections. She refers to the "subterfuge" she needs to undertake to present a picture - an image - of being a capable professional. The "reality" is quite different:

MV: So when you're going out to a client and you're working there for the day or something, you wouldn't let on that you had any problems whatsoever?

Rosalie: No. Oh, no. [MV: Why exactly is that?] They don't want to know. They're there. They're paying me as a professional. They don't want to know. They, it's not part of their issue. I've contracted to do a job. That's my issue and my problem, and it would contaminate the process enormously if it was otherwise. And I think for me that's one of the incredible costs of having an illness is, is that, that subterfuge, that's the word I want, subterfuge that needs to go on, where you are functioning in a world that, that assumes everyone is healthy, well and in control. So, all of sudden my energy has to go into pretending to be something that you're not, and so it's not just the energy of trying to make sense of the job with your head, but it's the emotional energy.

MV: Keeping up all the time?

Rosalie: Yes, and even with appearance. I mean I find it bard, I don't, the energy, going shopping is a pain in the bum for me ... I only have X amount of energy and I need clothes. I just find that so difficult and also resent it. So, even trying to keep up and look professional has its emotional cost. [MV: Yes. Yes.] And it's simple things like making sure your hair's OK and, and so I, I've, so therefore I have found that I need to create my own boundaries and, and spend a lot of time trying to get myself back on track and make me feel emotionally OK again, which is often a very rickety path (Rosalie #1, p. 13-15).

IMPLICATIONS FOR ORGANIZATIONAL ANALYSIS: THE WAY FORWARD

It is important to tell stories that are sometimes difficult to assimilate and difficult to hear (Boje 2000, p. 2). The intention is to uncover new knowledge and advance knowledge of patterns of action (Tovey 1998, p. 177) in an effort to increase understanding and organizational justice. I have utilized the work of Boje (2001), Frank (1995), Baudrillard and others to showcase the importance of antenarratives, to highlight the importance of chaos narratives in advancing our understanding, and to help us to understand that much of people with unseen chronic illness's lives is about portraying a distorted picture of reality in the interests of surviving organizational life. I have done this because it is traditionally the institutionalized organizational response of organizational members not to hear personal narratives (Boje 2000, p. 1; my emphasis).

Rigid, modernist organization practices encourage members to reach for the standardised policy manual in response to difficult organizational problems. More flexible, postmodern modes of organization point to more organic, less differentiated enclaves than those dominated by the bureaucratic designs of modernity (Clegg 1990, p. 181). However, the problems articulated here are such that even the most flexible organization will be challenged. The problems that sick people encounter as they negotiate the world of work lie beyond the differentiation and standardization of policy "solutions", just as much as they evade definition within the empowered, flexible and diffuse niches of postmodern organizational forms (as discussed by Clegg 1990, p. 203). A postmodern view offers a clearer view for those who seek justice (Farmer 2001). Here, 'happy kingdom stories' (Boje 1995, p. 998) have been avoided in favour of an attempt to "de-marginalize" silent voices (Vickers 2001).

I agree that a postmodern perspective can liberate (Hummel 1997, p. 19) and drive us to accept that many of our basic assumptions are fiction (Hummel 1997, p. 25), encouraging, for example, a timely questioning of the appearance of health. Postmodernism offers a useful gadfly, 'stinging us into acknowledging that our intellectual grids are deficient' (Farmer 1997, p. 110). It offers a role where the primary emphasis is on such aims as undermining interpretations, stinging us to recognise the need for scepticism about our cherished conceptual frameworks. It forces us to appreciate the value of hesitation about what we think we know, and obliges us to be sensitive 'about the injustices that result from faulty knowledge' (Farmer 1997, p. 110). The possibility of justice being realized is increased when a gadfly role toward injustice is adopted (Farmer 1997, p. 111). This project was spawned by a challenge to the popular and often faulty belief that if one looks well, one must necessarily be well. The stories reported here give voice to a group of organizational fringe-dwellers (Vickers 2000; 2001)-the chronically ill.

However there is more to be done than telling the story. The story must be heard. Those bearing testimony must accept responsibility. Becoming a witness to suffering assumes a responsibility for telling what happened (Frank 1995, p. 137). Testimonies to the truth are often unrecognized or suppressed (Frank 1995, p. 137). However, even if testimony tells these stories, we should still recognise that finally hearing a story only acts as a reminder of how close to the margins it is; how stories like these remain on the edge of silence. Testimony requires commentary in order to be transformed into a social ethic (Frank 1995, p. 145).

The storytellers present an 'aching picture' (Somers and Gibson 1994, p. 68) of their experiences in organizational life and clearly presented daily dilemmas. Who should they tell? What may they expect from others? Is this reasonable? How might they feel? How should they behave, especially at work? What will life hold for them in the future? How will they respond to that? Conversely, for colleagues of sick people, equally difficult questions emerge from another stance. How should one respond to the person at work with cancer? What should one say? What should one do? How might the sick person feel? How would I feel if in a similar situation? Might those responses change, from day-to-day, even from minute-to-minute? Is this reasonable? How might this affect their work? However, we should not hide from things because they are challenging. Indeed, the greater the challenge, the more thought and consideration is required. The pursuit of justice involves our careful consideration of the lives of organizational members.

What I conclude with is an acceptance of Flax's (1990) underscoring of the need to think in fragments. Flax (1990) suggests that we should not shy away from difficult questions, but that in addressing them, they allow us to glimpse troubles lying beneath. To take this a step further requires hearing - really hearing - chaos narratives, such as those presented here. This helps by acknowledging the experiences of others, by transferring what might normally be viewed as solely a difficult and negative fate into a positive experience, and by reinstating the voice of wounded storytellers. The ill person who turns illness into story transforms fate into experience (Frank 1995, p. xi). Those that listen to the story face the horror of the person who has experienced it, and allow them to move forward. An approach to organizational life that reflects the values espoused here-diversity, openness to multiple voices, inclusion, flexibility, respect (Gillepsie and Meyer 1995, p. 29) - is not always easy. However, remaining with the difficult questions, opening up the discussion, and accepting and reinstating the voices of those with less than perfect organizational experiences can move us towards a more just working environment.

ACKNOWLEDGMENTS

I am indebted to colleagues at the Eleventh National Conference of the Public Administration Theory Network Conference, Colorado Springs, Colorado, March, 1998 for their constructive advice. I also wish to thank Professor Stewart Clegg, Professor David Boje and two anonymous reviewers for their generous and thoughtful feedback on earlier versions of this manuscript.

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by Margaret H. Vickers

University of Western Sydney, Australia

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