Study Paper No. 5 PART III THE SOCIOLOGICAL DIMENSION CHANGE: ADAPTING TO A NEW COMMUNITY For people with AIDS coping with medical uncertainty, assuming constant change becomes a central feature in managing life choices and options. Community organisations such as AIDS Councils and PLWA groups have also responded to the issue of medical uncertainty and indeed have been responsible for promulgating a language that directly confronts the debilitating effects of uncertainty. Empowerment is a word heard frequently and another is Long-Term Survivor which was originally developed by people with HIV/AIDS to describe a person who has lived with a diagnosis of AIDS beyond 2 years. These two phrases encapsulate a community response to the death leaden stigma of AIDS and have been promoted in Australia primarily through HIV support groups established in the first few years of the epidemic. Yet despite these symbolic measures of progress, it is significant that amongst people living with AIDS, the notion of community has struggled to hold widespread currency in the HIV/AIDS response. Certainly, there exists a degree of public visibility through peak community organisations, most notably in Australia through the National Association of People Living with HIV/AIDS (NAPWA). Despite their's and some other valiant efforts though, there has been a notable lack of public statements both from representative consumer groups and policy-making bodies which address "a PLWA community". More commonly, we hear the term community being articulated with respect to more visible and active "target/at-risk groups", such as young gay men or people living with haemophilia. Why has this been the case? First and foremost, rarely do people with AIDS organise around the concept of community in the more overtly empowered manner in which for instance those that identify with "the gay community" may do. Put simply, the "PLWA community" is much less an ongoing social movement, and much more an artefact, generated by those whose reference to it enables advances to be made on behalf of particular interests not always limited to PLWAs themselves. The reasons for this are many and varied and were not the primary purpose of the Transitions study. What it did explore is the notion of community as explained by people living with AIDS and the way in which this might change through the course of their illness. The image of people with AIDS has typically been one of very ill individuals requiring permanent medical assistance and the attention of a few well-intentioned carers. Up to a certain point, this situation has in many ways simply reflected the harsh realities of surviving in the terminal stages with Category Four AIDS, when life expectancy periods were exceptionally short. Based on this logic, perhaps it is not surprising to note the lack of any real presence of a community of PLWAs, particularly given the difficulties that living with AIDS entails from day to day. Alongside of this observation however, lies the ever-growing reality of a population with increasing length of survival expectancy following a Category 4 diagnosis. There is some evidence that the changing nature of living through this period is impacting on the sort/s of community/ies with which people living with AIDS might identify. It is not our intention then to debate the semantics of what does or does not constitute a community but rather to further explore what sorts of communities people living with AIDS identify with, and how these might or might not change over time. Table 1 offers a general indication of participant's involvement with HIV/AIDS and/or gay organisations. Although no precise measure was formulated to arrive at the four levels of involvement - none, minimal, periodic and extensive - nearly all participants offered a concise and accurate response to the question, 'What has been your involvement with any HIV or gay community organisations?'. What is most significant about these categorisations is that they do not account for those whose present involvement in community organisations is minimal or non-existent. For eight of the men in this study, substantial involvement with the gay and AIDS groups had subsequently reduced to virtually nothing. Paul's case was typical here:
For Derek, confronting his own impending death made it very difficult to maintain involvement:
In a similar scenario, Charles is acutely conscious of the affect on him and what he perceives as a necessary response:
Eleven of the participants had never been involved in HIV and/or gay community organisations. In Don's case, this is due to rural isolation and long-term care for an ill partner:
And for John, there is a recognition of his diminished capacity to assist:
A PLWA Community? Is there then any community, or sense of a community, to which PLWAs belong? Given the strength with which the term "community" is employed to justify so many HIV/AIDS initiatives, it would seem this is at least a reasonable question to address, even if the answers are not as readily identifiable when compared with other sectors of the population affected by HIV/AIDS. Certainly, many participants spoke of a strong sense of community amongst fellow people living with HIV in support groups. Con
Gerry
Daniel speaks of the benefits of being involved with a British AIDS support group of like-minded peers whilst he was living well with HIV:
However, the flip-side of promoting empowerment principles in a support setting is the accent placed on a self-help philosophy which underpins community responses to HIV/AIDS in Australia. More specifically for PLWA, it is an ethos which has trouble in dealing with the isolation imposed by illness. Patrick has experienced the full spectrum of HIV/AIDS organisational support from being a newly diagnosed young gay man with HIV to approaching death over a seven year period. Here is his perspective of the PLWH/A culture:
Patrick's comments draw attention to the increasingly high profile and advocacy role now played by PLWH/A groups in Australia. In the bulk of these settings - except for where groups are specifically set up for support only - participants are required to be energetic, robust and overtly political. These are traits that very few people coping with AIDS possess or, more pertinently, wish to possess. Julian expresses this sentiment bluntly:
Kim would like to be involved but as her last line indicates, she is conscious of a certain capacity required to be a member of AIDS community groups:
Certainly, for some of the participants, retirement from work precipitated by difficulties in coping with HIV/AIDS, did enhance opportunities to be active within AIDS organisations: Bill
More often than not however, previously active members of HIV/AIDS agencies struggled to adapt as the effects of AIDS related illnesses began to make an impact. Whereas participants in their asymptomatic days would have been likely to be surrounded by a range of communities and groups, with very few exceptions, becoming ill tended to diminish the size of one=s chosen community rapidly. In fact, as we noted earlier in relationships with friends and family, PLWA are likely to be highly assertive and even autocratic in selecting the people they wish to see regularly. Thus, to speak of a PLWA community based on the same terms as a gay community or even a people living with HIV community is to misunderstand the relationship between the dying process and community identification. This is not to imply that PLWA suddenly no longer identify with these other communities once they become ill but it does highlight a major shift in their attachment to surrounding communities. For many of the gay participants in Transitions, whilst their sexual identity remained essential (and in some cases strengthened), their experience of living with HIV/AIDS had often intensively exposed them to a range of other communities and their chosen community in the final stages of AIDS was often reflective of this diversity. Of course, these generalisations about a PLWA community are all tempered by the increasingly positive treatments outlook for PLWA with access to such resources. In some of the participant's stories, an effective regime of treatment had enabled them to rejoin many community activities and organisations. Indeed, for those diagnosed in the midst of improved therapeutic prospects, there was a sense of expectation that AIDS would not fundamentally reshape their community networks: Louis
In Robert's case, a Category 4 AIDS diagnosis necessitated automatic retirement after a variety of community-based AIDS project work. He then goes on to explain that about a year and half later, he was "alarmingly well" again and returned to a similar job. These stories highlight the fragility of a community defined by the progress of the illness itself yet they do offer possibilities for a breakdown in the unofficial "apartheid" between HIV + people and PLWA in AIDS organisations. As an AIDS diagnosis does not now necessarily entail lengthy hospitalisation and rapidly declining health, the boundaries between asymptomatic and symptomatic become more blurred and potentially allow for increased involvement of PLWA. Nevertheless, as Patrick identified above, the same scenario could also potentially further alienate those still not "living well" - an image of a boisterous, healthy community perhaps exacerbating the PLWH/A's community's inability to confront death and dying. This internal struggle mirrors a larger debate between resources dedicated to prevention and education versus care and support in most Western countries where the epidemic has had a significant impact. In the current Australian PLWH/A movement, there is considerable dissension about the merits of promoting early treatments for people newly diagnosed with HIV versus providing adequate care and support for PLWA. Such an argument is unquestionably Western in its origins and application and provides further evidence of the difficulties in establishing an effective global PLWH/A movement when two substantially different epidemics co-exist. Given such fluidity and complexity, it seems as necessary as it ever has for PLWA, that their need for a community of whatever shape or form genuinely understands their requirements and their limitations. The last word on this issue lies with Patrick:
WORK If changes in community identification was significant for Transitions participants, it was arguably an even more critical transition from work to early retirement. As identified several times already, an AIDS defining illness can precipitate a crisis of social, psychological and physical dimensions for the individual concerned. A common response to a diagnosis of AIDS is to leave the work force permanently. The place of work in the construction of identity is a well documented phenomenon, however for people with AIDS the relationship between work and identity is often ignored (identity is more commonly examined in the context of the stigma of HIV/AIDS or cultural affiliations such as the gay community). In another study of people with a terminal cancer prognosis, staying at work was an important goal for a majority of people (Kellehear 1990, p147). To date, most resources for PLWH/A concentrate on implications of leaving work and undertaking retirement.11 Analysis of data taken from the Transitions project uncovers some of the meanings that are attached to work in the lives of people with AIDS and in a broader sense how individual and institutional arrangements involved in negotiating work while living with AIDS reveals a particular construction of the disease as a terminal illness. By this, we mean an emphasis on leaving work following diagnosis which would appear to be encouraged by the lack of discussion around other possibilities. This is reflected both in terms of how the individual interprets their own situation and how this appears to them in the broader structural arrangements of work. Leaving work is accompanied by an initial construction of the disease which emphasises physical debility, illness and limited time. A more complex picture emerges in the reflective comments of the people in the study which draw on other sources of meaning such as personal experience and knowledge of the experience of others.
Work Definition Before we launch into participant's comments about work, it is important to state what we actually mean by work. Grint (1991) and Hall, R (1986) point out the difficulties involved in defining what constitutes work. Activities which an individual may define as work may not be valued as such by others. There is an essential relativism involved in defining work against "objective" standards such as occupation or economic activity. It is in the practices and social relations of human activity that the notion of work is embodied. And this notion changes over time and is constantly being reinvented. If we restrict definitions of work to that of economic activity we exclude much. Similarly broad generalisations take little account of the meanings individuals attach to activities which they might describe as work. For example, it is hard work maintaining an acceptable quality of life and a level of health once diagnosed with a terminal disease. Bill says:
Work in this study is defined through the meanings that the people in the study attached to it. The meanings reflect a mixture of objective standards such as paid employment and more individualised interpretations which revolve around strategies to transform the notion of work to fit in with changed life circumstances. Most commonly when people referred to their work during the interviews they spoke about their paid employment. In our sample, the range of occupations was fairly broad, however there was a definite bias towards representation of the public and white collar sectors. Out of the 38 people interviewed, only three were still working at the time of the interview. Of the remainder, most were in receipt of sickness or invalid benefits, and a small minority had taken superannuation payouts or pensions.
Life Projects However, for others the idea of work had taken on a new meanings, perhaps best described as life projects. The notion of life project could mean working with others who have AIDS sometimes by involving themselves in HIV/AIDS groups. For some the life project was very individualised and concerned with addressing the spiritual aspects of their lives, as seen earlier in Part II, Sect. VI. An example of this is Paul who until diagnosis had what he described as a fulfilling and busy job with a private marketing company.
It is necessary to make a few remarks about the complex nature of AIDS illnesses and the variable illness trajectories of people with AIDS to qualify the discussion. The range and nature of AIDS defining illnesses and the mutable impact of treatments means that generalising about disability in relation to AIDS is difficult. For most people, an AIDS-defining illness means a shift in their physical ability to cope with work. For some this can be a permanent shift which effectively ends their working life. However, many people recover from their first AIDS defining illness having given up work and find it difficult to re-enter the work force. In the Transitions study, the range of AIDS defining illnesses illustrates the number of different conditions grouped under the umbrella label of AIDS and the difficulty facing individuals who have to makes choices about work in the face of many unknowns.
Discrimination As a diagnosis of HIV usually precedes a diagnosis of AIDS, in the majority of cases the HIV diagnosis occurs while a person is in employment The affect of the diagnosis on a person's ability to remain at work will depend on several factors: whether or not the information becomes known including visible signs and symptoms; in the workplace, the attitude of colleagues and management to working with someone who is HIV positive; the ability of the person who is positive to cope with the reaction of fellow workers and management. There is an extensive literature about HIV/AIDS and discrimination (see Pargetter & Prior 1987; Tindall & Tillett 1990). Although the literature is comprehensive in covering attitudes towards HIV/AIDS and people with the disease, there is less information documenting discrimination experienced by people with HIV/AIDS. If the extent of actual discrimination is unknown, the perception or fear of discrimination on the part of people with HIV/AIDS is something more widely documented. The literature also connects discrimination in the context of AIDS with discrimination against gay men. Remaining at work, then, for people diagnosed with AIDS involves addressing the perception, if not the actuality of discrimination as well as uncertainty in relation to their own physical ability to continue at work. Work is also closely identified with setting goals and generating a sense of achievement. Staying at work or leaving work poses several dilemmas - for some participants, knowing how much productive time is available to you and assessing how you should use that time was actually a source of additional stress. Gerry
Leaving Work Not everyone in the Transitions study felt as confronted or tormented by the dilemmas posed by illness. For some people we interviewed, leaving work was eagerly anticipated. Leaving work, to them, meant leaving a job which had little or nothing to contribute to the quality of their lives. For others, leaving work created opportunities to explore projects they had been thinking about for a long time or to involve themselves in voluntary activity connected with HIV/AIDS organisations. At another level, leaving work was described as a liberation from the compounding stresses associated with work and having AIDS. David
The anticipation of time off was reflected in number of the interviews although not working was strongly identified with broader sense of loss incurred by illness. Damian
Volunteering to work with HIV/AIDS community and activist groups offers one alternative although being involved in committed groups can act as a constant reminder of the personal stake one has in the disease. Mick
Frank
For others who recovered from their first AIDS defining illness and enjoyed subsequent periods of good health, leaving work left a vacuum which they found difficult to fill. The absence of paid employment contributed to feelings of negative self worth, a diminished social life and a frustration at what was viewed as the closure of a major avenue to personal satisfaction. Gary speaks of this problem:
In response to a question of what he felt were the main consequences of having AIDS, Marcus surmises:
This analysis of AIDS and work also reveals something about conceptions of disability, certainly in relation to how AIDS is understood as a disability and how this understanding affects the work options of people with AIDS. Responses by the person with AIDS and those around them to the onset of an AIDS defining illness act as a signifier of the powerful meaning attached to AIDS. Thus it is more generally assumed, than not, that an AIDS defining illness necessarily signals the end of the working life of a person and the beginning of a different phase characterised by debilitating illness, a permanent sick role. The profile of AIDS illness and the transitory nature in which they can be experienced do not fit neatly into the framework of disability. The complexity of the physical manifestations and the uncertainty about their outcomes makes it very difficult to plan around work. The seemingly impenetrableness of this complexity means that decisions made in relation to work can be regretted in hindsight. Patrick
Filling the Void The search to fill in the void created by leaving work was a significant issue for may of the participants. Research about the effect of AIDS on self image and identity is most commonly focused on the affect of the stigma of the disease and the relationship between AIDS and other stigmatised conditions, most notably homosexuality, sex work and drug use12. Less attention has been paid to the affect of illness and its impact on social attachments and roles such as work. To ignore these as sites of identity reference because they appear too mundane or irrelevant leaves important areas untouched. In part, this is a response by researchers to the new politics of identity. Organised cultural and political activity from which notions of identity are debated and created have restricted the field of inquiry. And yet identity politics is in itself a response to the stigma of homosexuality and HIV/AIDS. However, as indicated earlier, not all gay men with AIDS perceive themselves as "attached" to the gay community or involved in the exercise of identity politics and may understand the development of their individual identity in far broader terms, in which their attachment to work may be a central feature. Also, the implications of an improved treatment outlook, sees many PLWA struggling to adapt in imagining a viable future upon retirement or exiting the workforce. In his experiences in San Francisco, Tony Keenan observes that "treatment advances can mean a cruel change in expectations, adjusting from a retirement with a very short life expectancy to a longer life with a serious disability and little income"13. Because the Transitions research focused predominantly on people diagnosed with AIDS in the terminal stages of their illness, these issues were not as pertinent for our participants.
Returning to Work In the present favourable treatments environment, it could be expected that issues around work for PLWH/A have shifted substantially from when the Transitions study was conducted. Indeed, the People Living with HIV/AIDS and their Carers team at the current National Centre in HIV Social Research identified that the most significant work issue in a sample of 120 PLWH/A in late 1996 was the possibility of returning to work. In particular, many of the participants questioned their capacity to return to the workforce after a prolonged absence and the need for skill assessment and retraining. They also flagged their need for flexible working arrangements whilst acknowledging the limited availability of part-time work14. There were hints that the Transitions participants were contemplating prospects of renewed employment but not to the extent evident in the Current Issues survey. Even today, contemplating a return to work is problematic for many PLWH/A as they cope with grief and loss issues and less recourse to legal assistance in responding to HIV related discrimination. Work then is clearly a major source of identity. The connections between work and identity are many. Work may be a central feature in how a person understands and creates meaning about their sense of identity (Lawler & Hall, p. 305). Generating meaning about one's self and one's identity through work is assumed to be a life-long issue for most people but remains underacknowledged. It also remains for most parts of the globe a heavily gendered experience, with work and the workplace intimately tied to perceptions of masculinity. The place of work in the life of a person with AIDS is seldom accorded a significance which reflects the loss felt due to the social and psychological upheaval involved in leaving the work force. For some people, the desire to relinquish work is strong. Many people feel that their interests are best served accomplishing tasks which have personal significance before illness becomes severely debilitating. In the context of recent disability legislation reform in Australia and elsewhere, continuing at work, albeit in a modified form, is an option which is beginning to be explored by many people with AIDS. There are significant implications here for people with AIDS, employers, counsellors and others providing advice. Endnotes 11. For an excellent coverage of these issues, see the fourth booklet in the Access series published about Living with HIV/AIDS issues, Levinia Crooks (1996) Access: Information about Leaving the Workforce and Retirement for People Living with HIV/AIDS, Sydney: Australian Federation of AIDS Organisations (AFAO) and National Association of People Living with HIV/AIDS (NAPWA). 12. See Douglas Crimp (ed.) (1993) AIDS: Cultural Analysis, Cultural Activism, Cambridge, MA: MIT Press for excellent essays on these issues. 13. Tony Keenan (1997) "New Hope... New Agendas", National AIDS Bulletin, 11:1. 20-21, 36. 14. Diana McConachy, Ian Grubb & Doug Ezzy (1997) Current Issues for People Living with HIV/AIDS: A Community Report, La Trobe University, Melbourne: NCHSR (PLWH/A & Carers), pp12-13.
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