Work and Unseen Chronic Illness

Silent Voices

Margaret Vickers

• Publisher: Routledge
• Year: 2002
• ISBN:
  9781134544493
• Edition: 1
• Topic: Business
• Subtopic: Business General
• Index: Business

In an increasingly ageing society, medicine, hygiene and nutrition have reduced the impact of acute and life-threatening illnesses. However, whilst we are living longer, the chance of developing or contracting a chronic illness is increasing.
There are a growing number of working adults affected by chronic health conditions that may be largely invisible to those around them. In this book, the author explores the 'silent' problem of unseen illness at work.
The author employs qualitative research methods to challenge the idea that if you look well, you must be well. While demonstrating the effectiveness of this controversial methodology, she uses it to expose the voices of a group of marginalized workplace actors who have hitherto remained unheard. Stories from people with cancer, multiple sclerosis, endometriosis and other illnesses are interspersed with the author's reflections about life and work with illness that others cannot see. These stories reflect a passage of trauma and marginalization, but also foreground themes of survival.

1 A silent problem

At the bottom of all philosophy, of all science and of all thinking, you will find the one all-inclusive question: How is man [sic] to tell truth from error? The ignorant man solves this problem in a very simple manner: he holds that whatever he believes, he knows; and that whatever he knows is true. This is the attitude of all amateur and professional theologians, politicians and other numbskulls of that sort … Opposed to this childish theory of knowledge is the chronic doubt of the educated man. He sees daily evidence that many things held to be true by ninetenths of all men are, in reality, false and he is thereby apt to acquire a doubt of everything, including his own beliefs.

(Mencken 1967: 147, emphasis in the original)

A problem illuminated

The first question I needed to ask, as a researcher, was not how to proceed, but why I was involved (Drew 1989: 431). The quiet evening with friends depicted in the Prologue was the catalyst for this study into invisible chronic illness and its impact on people’s lives – especially their working lives. This is a study that inherently questions what the majority believe to be true – that if you look well, you must be well. It was also, initially perhaps, a clumsy but well-intentioned attempt to seek some form of ‘truth’. I am one of many that commenced with the misguided initial belief – not uncommon in modernist philosophy – that if one could perhaps take the problem apart then one would somehow ‘own’ it, ‘understand’ it and be able to move towards the solution. I have learned that there are no easy solutions and that some things are not even especially easy to discuss, let alone solve.¹ This is my effort to commence the protest march against ‘death by invisibility’ (Geertz 1986: 376) and against ‘unacknowledged dogma’ in organisational consciousness (Kouzmin 1980: 131). It is an attempt to seek some understanding of how events relate to one another, and to formulate a means to help us make sense of the world through a process of negotiation and renegotiation (Denhardt 1981: 3). In this case, the world of unseen illness.

Those introduced in the Prologue all live with what is termed an invisible chronic illness (Vickers 1997a; 1998a; 1999a; 2000a; 2000b). At the time of writing, we were all professionals, working (or, in my case, studying) full-time. We all managed these conditions in our lives as best we could. They were conditions that were not necessarily workplace-related nor workplace-caused. They were illnesses that could not be seen, but could certainly be felt. They are illnesses that are poorly understood in the West,² with this absence of understanding extending beyond the medical profession, to family and friends, and to colleagues.

In this study, my experiences were considered data as it was recognised that they would influence the outcomes of the research.³ Hence, the reader will find numerous soliloquies, annotations and reflections included in this story – a term used deliberately.⁴ It was deemed vital to spotlight for the reader a modicum of the dramatic life experiences that unfolded for me in parallel with my search for some understanding of the lifeworld and perspective of those I was interviewing. I determined that, as a result, I was free to combine and synthesise in any way that communicated effectively (Gergen 1991: 113).

As a naive researcher who was, initially, unswervingly influenced by her modern world, I commenced the project pragmatically. Even at these early stages, I recognised that the modernist agenda is one that did not comfortably recognise the murky eddies of personal experience. As a pragmatist, I found that unseen chronic illness was an under-researched area. As noted in the Introduction, there was a dearth of literature about invisible chronic illness in the management and organisational arenas. What did exist did not focus on workplace issues or workplace experiences for the individuals concerned. So, for the modernist, I commence the discussion with some very weighty pragmatic concerns. However, as the research progressed, these became less of a focal point than the humanitarian concerns articulated later in this chapter and throughout this book.

Pragmatic concerns

Chronic illnesses are now the biggest form of health problem confronting medicine.

(Fitzpatrick 1984: 29)

Critical and acute illness is abating in Western society (Nettleton 1995: 11). This is due, in large part, to improved nutrition and hygiene and, perhaps, to a lesser extent, to advances in medical science (Bennett 1996: 1). Conversely, chronic illness is an increasing phenomenon⁵ and, consequently, one that must impact the workforce. Chronic illness, a twentieth-century phenomenon, is ‘considered to be the number one health problem in the United States’ (Hastings 1992: 222). There are now slow rather than quick deaths (Bates and Lapsley 1985: 193, my emphasis), which need recurrent care and which are often disabling (ibid.: 194).

In Australia, the Australian Bureau of Statistics (ABS) reported in the 1977–78 Australian Health Survey that 45 per cent of Australians had one or more chronic conditions (Goldstein 1983: 54). The 1989–90 National Health Survey reported that just over 66 per cent of Australians had a chronic or long-term condition (ABS 1990). Whilst it is recognised that chronic illness and disability predominates in the aged population (persons aged 60 years or over) (ABS 1988: 1), this problem cannot be dismissed as only affecting the aged in the community (ABS 1988: 2; Buhler 1991: 17; Vecchio, Hearn and Southey 1992: 9). In 1988, over one million Australians (of the then population of approximately 16 million) between the ages of 15 and 60 years of age (of working age) were considered by the ABS to be disabled (ABS 1988: 2). The 1989–90 National Health Survey indicated that, for the same working age group, there were over eight million reports of long-term conditions (although it is noted that each person reporting may have reported more than one type of illness) (ABS 1990: 23).⁶

We know that having a disability reduces your chances of getting a job (Gaze 1991: 49).⁷ People with disabilities have half the employment participation rate than those without disabilities (Klimoski and Donahue 1997: 109–10) and disabled people, when they do work, are often placed in entry-level, unskilled and low-earning positions (ibid.: 110). Less attention has been given to workplace problems for people with chronic illness. Concern for those who are working and also have a chronic illness is long overdue (Vickers 1995a; 1995c), especially when the illness cannot be seen.

The introduction of anti-discrimination legislation in the areas of gender, religion and race has been implemented in Australia for a number of years. Of relevance here was the enactment of the Federal Disability Discrimination Act (DDA 1992). This makes it unlawful, in Australia, to discriminate against people on the basis of their disability in areas such as:

work, accommodation, education, access to premises, clubs and sport; and the provision of goods, facilities, services and land; and existing laws; and the administration of Commonwealth laws and programs.

(ibid.: 2)

The DDA promotes equal rights for the disabled, as well as trying to promote recognition and acceptance of disabled and chronically ill people’s rights within the community (ibid.). The DDA, administered by the Human Rights and Equal Opportunity Commission (HREOC), added to the previous state-by-state legislation where communities were afforded different (or no) levels of protection depending on the location of the alleged discrimination.⁸ However, legislation cannot force a positive change in people’s perceptions (Noel 1990: 27) and there is no guarantee of immediate implementation of affirmative action programs, nor of responsible administering of equal opportunity management plans (Kramar 1988: 322).

The hiring of the disabled has been proffered, by some, as the solution to economic problems, due to the problems of the shrinking labour pool, the aging population and the need to utilise every possible resource to its best advantage (Buhler 1991: 17). From an organisational perspective, there are those who suggest that we should busy ourselves convincing management that equal access to employment for disabled or chronically ill individuals is a good business strategy (Noel 1990: 26). It is one, ostensibly, requiring a major change in management and co-worker attitudes and perceptions, away from being charitable towards disabled and chronically ill, to being based on good business sense (Buhler 1991). Disabled workers are variously described as being reliable, productive and dependable (Noel 1990: 30; Buhler 1991). Additionally, nearly 50 per cent of top managers rated the job performance of employees with handicaps to be better than that of non-handicapped employees in the areas of ‘willingness to work hard, reliability, attendance and punctuality on the job’ (Noel 1990: 30). Junor (1985: 298) confirmed that not only can the disabled be quite usefully employed, they may prove to be better investments than the able-bodied (Junor 1985: 298).⁹ For the functionalist, then, Stephen Hawking’s life illustrates that people with disabilities may not only offer equal benefit, but may be of far greater value than their able-bodied counterparts:

Hawking’s practical uselessness became one of the positive side effects of his illness. It may take him a long time to get up and go to bed, but he doesn’t have to run errands, do home repairs, mow the grass, make travel arrangements, pack his suitcase, draw up lecture schedules or serve in time-consuming administrative positions in the DAMTP or at Caius. Such matters are left to Hawking’s colleagues and assistants and to his wife. He can spend all his time thinking about physics, a luxury which his colleagues envy him.

(Ferguson 1991: 88)

However, I ask whether Hawking’s colleagues similarly envy the fact that Hawking is unable, even if he wanted, to mow the grass or pack his suitcase; and whether they have even thought about that. I point out the dangerous emphasis on functionalism and efficiency. Surely, it is worthwhile to be concerned about the rights of people with illness and disability because they are people, citizens and deserving of justice, rather than because it makes good business sense. I punctuate this discussion with some thoughts from Huxley’s (1932/1983) chilling social commentary, Brave New World. Functionalism gone awry is depicted as we join the ‘Director of Hatcheries and Conditioning’ who speaks to the imperative of hastening the maturation process of Epsilons; human beings decanted and produced solely for use in low-level factory work:

… if they could discover a technique for shortening the period of maturation, what a triumph, what a benefaction to Society! …

‘But in Epsilons,’ said Mr. Foster very justly, ‘we don’t need human intelligence.’ Didn’t need and didn’t get it. But though the Epsilon mind was mature at ten, the Epsilon body was not fit to work till eighteen. Long years of superfluous and wasted immaturity. If the physical development could be speeded up till it was as quick, say, as a cow’s, what an enormous saving to the Community!

(Huxley 1932/1983: 27–8)

Yes. What a saving – and what a cost.

Humanitarian imperatives

No one has, to the knowledge of Thomas Szasz, ever advocated an ethic of inhumanism or referred to themselves as an inhumanist (Szasz 1977/1988: 87). Sadly, though, inhumane thoughts and deeds continue to surround us. Nowhere are they more profound than in organisational life. I shift the discussion now away from pragmatic reasons (firmly and decidedly) towards the engine for this research: concerns about people and what they endure in organisational life. I am reminded that:

The fact that a situation is ubiquitous does not absolve us from examining it. On the contrary, we must examine it for the very reason that it is or can be the fate of each and every one of us.

(Miller 1983: 197; cited in Tal 1996: 1)

The principles of avoiding harm to others, respecting the autonomy of others, avoiding lying and honouring agreements (Quinn and Jones 1995: 30) should apply in all settings, including organisations, and should not be overshadowed by the commonly held belief that shareholder wealth takes precedence. Unfortunately, what tends to be seen in organisational life is the implementation of ‘instrumental ethics’ – a language of ethics, used predominantly to serve the goal of firm value maximisation (Quinn and Jones 1995). Our actions can never be fully explained without due consideration to the social practices and social institutions which surround us (Denhardt 1981: 68). Organisations provide standards of moral behaviour that are often impersonal and morally untenable for the individual. For example, the use of euphemism in organisations is one means of how we humans devise deliberately slippery language to justify to ourselves and to others what it is we are doing (Stein 1998: 7). For example, when we are ‘rightsizing’ and ‘downsizing’ people out of their jobs, what we are really doing is engaging in mass layoffs. Yesterday’s faithful, valuable, long-standing colleagues (and friends) become tomorrow’s ‘fat’ to be ‘trimmed’ and forgotten, so that the company can become ‘lean and mean’ (ibid.: 8). Time and again we are confronted with instances in which the viewpoint of the organisation takes precedence over individual morality (Denhardt 1981: 13). The impersonal, depersonalised language of rationality and organisation allows us to use euphemism and rhetoric to mask the ugly reality of life in organisations. It allows us to be part of the massive deception (Stein 1998: 29). The ordinariness of euphemism disguises its potency and influence. Under the cloak of euphemism, one may commit what would usually be regarded as immoral and unethical, and be upheld as one doing something good in the service of what is thought to be virtuous – being efficient, cutting costs, being realistic, considering ‘the bottom line’ (Stein 1998: 41). Unfortunately, the stories that follow provide convincing evidence that this practice continues. Individuals, as a direct result of the ideology of economic rationalism and the rhetoric of managerialism, behave in a manner that would be routinely be regarded as being outside the realms of everyday consideration and morality. Denial, through euphemism, of what is really happening, of how and what one really feels, and of what that really means (ibid.: 45) is all around us.

As I deliberately shift the focus from the pragmatic, to the humanitarian, I vividly recall reading Kellehear’s (1989) research into the experiences of those with terminal cancer.

The reason for the high participation rate (only four out of 104 declined to participate); the reason why only one person withdrew mid-interview; the main reason why embarrassment, pain, the absence of voice boxes and the presence of tears did not deter, was the explicit and persistent belief that others should know their story and that others might benefit from knowing it. I believed it too. Together we strapped ourselves in to weather the consequences of our mutual belief in the value of this research. It seems that most people want to leave something of themselves to others. When one is dying, this is even stronger. The actual benefit to the participant is hard to define. The hurt experienced by researcher and participant is difficult to endure.

(ibid.: 65–66)

I move now to introduce the theoretical groundings for the some of the stories, interpretations and questions that follow.

The lifeworld of people with ‘invisible’ chronic illness: complex and challenging

Abramo and colleagues (1997: 349) suggested that current models of the world of work should not be taken as an inevitable paradigm, in so far as they have failed to reflect the basic dynamic of the processes that are convulsing industry and society. It would appear that these same paradigmatic restrictions have applied to the analysis of those who are chronically ill and who work. That there has been so little phenomenological work done in the area of chronic illness and work is testament to this. The literature that does address chronic illness does so, traditionally, from a nursing and health science perspective, in relation to occupational health and safety, or with respect to the medical model.

The stories that follow seemed to indicate t...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Contents
• Foreword
• Acknowledgements
• Prologue: A journey begins
• Introduction: The authentic writer
• 1. A silent problem
• 2. An insider’s methodological journey
• 3. Doing research – from the inside
• 4. A passage of trauma
• 5. Organisational fringe dwellers
• 6. Careerist concerns
• 7. Surviving
• 8. Notes from a survivor witness
• Epilogue: A pause …
• Notes
• References
• Name index
• Subject index