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Diminishing worlds?: the impact of HIV/AIDS on the geography of daily life

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Diminishing worlds?: the impact of HIV/AIDS on the geography of daily life

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Content DIMINISHING W ORLDS?: THE IM PACT OF HIV/AIDS ON THE GEOGRAPHY OF DAILY LIFE by Robert David W ilton A Thesis Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree MASTER OF ARTS (Geography) December 1994 © 1994 Robert David Wilton. UNIVERSITY O F S O U T H E R N CA LIFORNIA T H E G R A D U A T E S C H O O L U N IV E R S IT Y PA R K L O S A N O E L E S , C A L IF O R N IA 9 0 0 0 T This thesis, written by under the direction of h i J? Thesis Committee, and approved by all its members, has been pre sented to and accepted by the Dean of The Graduate School, in partial fulfillment of the requirements for the degree of Robert David Wilton Master of Arts (Geography) D t*m NOV 18th, 1994 Date Chmirmm* Dedication To Armando, Craig, Harry, Jeff, Jim, Juan, Mongo, Ron and Scott, and to my family. Acknowledgements First, a heartfelt thanks to the nine men who agreed to participate in this study, and who shared so much of their lives with me during the interviews. This thesis is dedicated to them. Thanks also to the many other clients of the foodbank who took time to chat with me about their experiences. Many thanks to AIDS Project Los Angeles, especially to the staff of the Necessities of Life foodbank. Gary Hensel, the foodbank manager, gave me permission to speak with clients from the program and offered advice on recruiting respondents for the study. Staff members Tom Burger, Theo Sofianides and David Werthe also provided encouragement and advice. A big thank-you to my friends Catherine Walsh, Gregg W assmansdorf and Tracy Poole who kept me sane, and who also sat through several drafts of the questionnaire. Many thanks to the members of my thesis committee, Dr. Jennifer Wolch and Dr. David Sloane, for their insights and advice. Finally, thanks to my thesis chair and advisor. Dr. Michael Dear, for all the help he gave me in completing this project, and for his continuing support. IV Table of Contents Dedication Acknowledgements List of Figures and Tables Ch.l Introduction: The Spatial Dimensions of Living with HIV/AIDS 1.1 The growth of an epidemic 1.2 Research agenda 1.3 Outline of the paper 1.4 Note on terminology Ch.2 Geography and HIV/AIDS 2.1 Introduction 2.2 Living with HIV/AIDS i. The physical impact ii. Psychological well-being iii. Social symptoms 2.3 Social networks and daily paths 2.4 The geography of marginal groups 2.5 Community opposition; the role of NIMBY 2.6 Diminished worlds? Ch.3 Living with HIV/AIDS: A framework for analysis 3.1 Introduction 3.2 Parameters of Space and Time i. Space ii. Time 3.3 The individual i. Physical health/ stage of illness ii. Psychological well-being iii. Socio-demographic profile 3.4 Social networks 3.5 Service providers i. Medical services ii. Welfare services iii. Voluntary and non-profit agencies ii iii vii 1 1 3 S 9 I 1 I I 12 12 20 23 34 44 50 53 55 55 56 56 60 62 62 63 65 67 69 69 72 74 V 3.6 The community 76 i. Community resources 76 ii. Community attitudes 77 3.7 Social Context 79 3.8 Research methodology 81 i. Volunteer work 82 ii. The questionnaire 83 iii. Interviews 85 iv. Interviewees 86 v. The interviewer 88 C h.4 Living w ith HIV/AIDS: T he individual 94 4.1 Physical health 94 4.2 Psychological well-being 99 4.3 The socio-demographic profile 106 C h .5 Living w ith HIV/AIDS: Social netw orks 113 5.1 The role of friends 114 5.2 The role of family 121 C h.6 Living with HIV/AIDS: Service agencies 126 6.1 Medical services 127 i. Doc tor-patient relationships 127 ii. Hospital experience 130 iii. Medication 132 6,2 Welfare services 140 i. Access to benefits 140 ii. Welfare income 142 iii. Additional income 143 6.3 Voluntary and non-profit agencies 144 i. Available resources 144 ii. Agencies as places 147 iii. Variations in service use 149 iv. Criticism? 151 C h .7 Living w ith HIV/AIDS: The com m unity 155 7.1 The gay community and sexuality 156 7.2 Community as place 161 vi Ch. 8 Living with HIV/AIDS: The broader context 169 8.1 Government response 170 8.2 Media response 172 8.3 Cultural setting 173 Ch. 9 Living with HIV/AIDS: A stage model 175 9.1 A stage model 175 9.2 Pre-diagnosis 176 9.3 Shock 179 9.4 Cocoon 180 9.5 Emergence 184 9.6 Relapse 188 9.7 Recovery 190 9.8 An assessment 192 9.9 AIDS and death 196 Ch. 10 Conclusion 200 10.1 Synthesis 200 10.2 Future research 211 10.3 Closing remarks 217 Appendix 1: Sample questionnaire 218 Bibliography 225 vii List of Figures Figure 3.1 Dimensions of Life following an HIV Diagnosis 57 Figure 3.2 Location of Respondents’ Residences in Los Angeles County 87 Figure 9.1 Stages of Life following an HIV Diagnosis 177 Figure 9.2 TheChanging Dimensions of Everyday Life 197 List of Tables Table 1.1 Adult/Adolescent AIDS Cases by Exposure Category and Sex, 3 United States. Table 2.1 Opportunistic Infections 15 Table 3.1 Respondent Profiles 89 1 CHAPTER 1 Introduction: The spatial dimensions of living with HIV/AIDS. 1.1 The dimensions of an epidemic Despite significant advances in our understanding of the Human Imm unodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), and the development of drugs to slow their effects, there appears to be little sign of a cure for the immediate future. To date, some 339,(XX) people within the United States have been diagnosed with AIDS, and more than 2(X),(XX) of them have since died (Center for Disease Control, 1993). Estimates for the number of people currently carrying HIV range in the millions, and it is therefore likely that many more people will lose their lives in the years to come. For each person who tests positive, living with HIV/AIDS on a daily basis is a complex and difficult task. The lowering of the body’s immune system leaves the person increasingly vulnerable to a wide range of opportunistic illnesses that would pose little or no threat under normal circumstances. A variety of debilitating symptoms associated with these illnesses threaten prolonged suffering, and death from AIDS is frequently associated with both physical and mental breakdown. In addition, the shock of diagnosis, and the subsequent strain of living with a terminal illness can induce psychological problems that may also interfere with an individual’s daily life. Loss of confidence in one’s own abilities, feelings of despair, anger or depression, and other emotional responses have all been documented. Thirdly, people with HIV/AIDS have also had to endure the widely reported social symptoms of discrimination and neglect. As a consequence, individuals have been denied access to housing, employment and education; abandoned by friends and relatives; and barred from insurance and health resources 2 precisely at the time when they are in greatest need of support. Research has pointed to the very detrimental affect that injustices of this nature can have upon a person’s ability to cope with both the physical and psychological challenges of HIV/AIDS. In addition, several studies indicate that negative social reaction will continue to make attempts to curtail the spread of HIV, or to further understand its underlying etiology significantly more problematic if the illness is driven further underground. However, despite these challenges to the individual's well-being, it should not be assumed that life with HIV/AIDS consists solely of deterioration and demise. Indeed, the temptation to equate diagnosis with death threatens to obscure what may be many years of fruitful, if problematic, existence. At the same time, it may be all too easy to forget the spectrum of assistance that people require to carry on with life following diagnosis. It has. in fact, become increasingly difficult to make any generalizations about a given individual’s experience with HIV/AIDS. As more cases emerge among men, women and children of different sexual orientation, race, ethnicity, class, religion, and age, and in different locations, the precise nature of medical, psychological and social symptoms become harder to calculate, as does the ability of the individual to deal with them (see Table 1.1; also Stolberg, 1993; Aubry, 1994, Berg, 1994). Although similarities undoubtedly exist, the particular characteristics of the individual, his or her friends and family, the community in which he or she lives, and the availability of proximate services will have a profound effect on the person’s experience with the illness. For example, poor health generally may mean physical deterioration of health and the appearance of "full-blown" AIDS over a relatively short period of time. Table 1.1 Adult/Adolescent AIDS Cases by Exposure Category and Sex, United States. Exposure category Males Oct 91- Sept 92 Oct 92- Sept 93 Females Oct 91- Sept 92 Oct 92- Sept 93 Cumulative total Men wbo have sex with men 24, 334 (61) 46, 025 (56) - - 183, 344 (55) Injecting drug use 8, 621 (22) 19, 142 (23) 2, 815 (46) 6, 891 (47) 80, 713 (24) Men wbo have sex with men and inject drugs 2, 638 (7) 5, 353 (7) - - 21, 142 (6) Hemophilia/coagulation disorder 317(1) 990 (1) 6(0) 27 (0) 2, 963 (1) Heterosexual contact 1, 613 (4) 3,328 (4) 2, 588 (42) 5, 454 (37) 24, 358 (7) Receipt of blood transfusion, blood components or tissue 385 (1) 695 (1) 278 (5) 496 (3) 5, 984 (2) Other/ not specified 1, 925 (5) 6, 174 (8) 466(8) 1, 833 (12) 15, 840 (5) Total 39, 833 (100) 81, 707 (100) 6, 153 (100) 14, 792 (100) 334. 344 (100) Figures in brackets indicate percentages. (cf. Center for Disease Control, HIV/AIDS Surveillance Report, 1993, 5: 3.) C O 4 whilst other people may remain largely asymptomatic for a decade or more. At a given time, active discrimination in one community can be contrast with energetic altruism displayed by members of another; the support of one family with the ostracism of another. As time passes, each community, each family, and each individual may also vary in their ability and/or willingness to deal with the illness. 1.2 Research agenda The presence of variations in different people’s abilities to deal with HIV/AIDS raises significant questions about why and where they occur, and, subsequently, the differential implications they are likely to hold for people living with HIV and AIDS. Although a large body of literature currently exists on this topic, very little research has explicitly considered the geographical dimensions of living with HIV/AIDS. It is my contention that space is a vital, and arguably central, component in any attempt to comprehend the change that takes place life following diagnosis. At one level, the particular space or place in which the person with HIV/AIDS exists is an important determinant of both the reaction he or she can expect to experience, and the resources available to assist with the emotional, material, and instrumental challenges that may arise. Concomitantly, the symptoms (physical, psychological and social) that appear as a result of HIV and AIDS may impact the nature of the space that surrounds the individual. Hence, if a person is unable to leave home because she is physically unwell, either as a result of illness or medication, then her day-to-day world is constrained as a result. At the same time, if a person is unwilling to leave his home because he fears the looks and com m ents he may encounter whilst out, a similar constraint is imposed, but for 5 a very different reason. The net effect however, is the same; a reduction in the size of the individual's daily environment— a diminished world— and an inability to access the surrounding community and its resources. Through time and space, the particular experience of people living with HIV/AIDS will vary, depending upon the psychological and physical condition of the individuals and the particular characteristics of the people and places that surround them. With these issues in mind, the primary aims of this thesis can be presented as follows: 1. To understand how the social, psychological and medical symptoms of HIV and AIDS have impacted people’s lives ; 2. To identify how this impact has concomitantly transformed the spatial extent of people’s daily worlds at the level of the individual body, interpersonal world, and social environment; 3. To identify those factors that help to determine the magnitude of this impact for different individuals. The methodology for this study proceeds in the following way. First, a theoretical framework is developed to afford an appreciation of those factors that mediate the impact of HIV and AIDS upon an individual. The point of departure for this framework is a belief that quality of life following diagnosis is determined by a combination of five broad dimensions. These are: the characteristics of the individual in question; the quality and extent of his or her social network; the accessibility and efficiency of (medical, welfare and other) service providers; the prevalent attitudes and available resources of the com m unity in which he or she lives; and the influence of the broader social context. 6 Drawing insights from social network analysis and other analogous geographical research, these five factors are then situated within spatial and temporal dimensions so that the interplay between illness and space over time can be gauged. For the purpose of the analysis, spatial dimensions include those of the individual body, of interpersonal interaction, and of the overall social environment. Time is used to denote linear time in days, months, and years, but also a more personalized time driven by the psychological and physical challenges of HIV and AIDS. In sum. the framework suggests that the cumulative influence of these five dimensions at a given place and point in time will determine the impact that HIV/AIDS has upon the quality and spatial extent of the individual's world. With this framework in place, the thesis next turns to address the issue of empirical analysis. Data for this thesis were obtained from a pilot study carried out between February and June of this year. The study comprised a series of detailed ethnographic interviews with nine men who were contacted through the Necessities of Life food bank operated by AIDS Project Lais Angeles (APLA). Although the interviews were semi-structured in nature, an attempt was made to address how the men felt that their lives had been impacted by diagnosis and the subsequent presence of HIV/AIDS; to what extent they felt that the illness had constrained them both socially and spatially; and how these constraints had changed with time. In addition, the men were questioned about the role that each of the five dimensions identified above had played in their lives since diagnosis. The interviews were transcribed shortly after so that as many of the nuances and subtleties displayed by the men could be retained as was possible. 7 Analysis of the interviews is divided into six sections. The first five are devoted to exploring the influence of those factors that comprise the analytical framework (individual, social network, service providers, community, social context). This thematic outline for the analysis was selected over the use of individual case-studies to allow a more immediate comparison of the different experiences recounted. W ithin each section, quotes taken from the transcripts are used to illustrate the varying experience of the men, and to support assertions concerning the relative importance of the different factors. The characteristics of the individual are by definition a central influence on the personal impact of HIV/AIDS. Socio-demographic factors such as race, sexual orientation, and age, as well as the relative physical and psychological resilience of each of the men may be particularly significant. Of course, the individual is rarely alone following diagnosis. A second factor, the strength of an individual’s social network may also be an important influence on the nature of life. The presence of friends or family to help an individual to deal with the psychological and physical challenges of the illness may be invaluable. The presence of a long-term partner and/or one or more friends with HIV/AIDS may also have special significance. Service agencies, collectively identified as the third factor, may also be important for a variety of reasons. Contact with medical professionals and access to medication, the need for hospitalization, a growing reliance on welfare, access to subsidized accommodation, and the many services provided by the non-profit agencies may all act as significant influences upon the quality and spatial extent of each m an’s day-to-day world. The fourth factor, community, may have a som ewhat contradictory impact. On 8 the one hand, one might expect the gay community and the communities in which the men lived appear to be tolerant and often extremely supportive of people with HIV/AIDS. On the other hand however, informal reactions experienced by the men could vary significantly. As a result, anxiety about community reaction may have an important psychological impact on some. Personal experience of community reaction, whether favorable or not, affects the range of the individual’s daily routine. Finally, the broader social context is considered. The government, the media, the planning framework, and the economic climate must surely impact people’s lives. In what way are people’s lives affected? Is it possible to identify those mechanisms at work at the level of the everyday? Following the explication of each of the five factors, the sixth and final section of the analysis draws upon the m en’s experiences to construct what is essentially a model of life following diagnosis with HIV/AIDS. No doubt, the fact that I have already cautioned against generalizations concerning people’s experience with the illness makes the introduction of a model appear somewhat incongruous. However, the apparent contradiction is explained in two parts. First, despite the fact that the analysis seeks to identify and explain the different experiences of interviewees, there may also be some similarities among the m en’s experiences which also require identification and explication. Second, the model itself will not claim to be an accurate predictor of the fate that will befall a given individual’s world following diagnosis. By using both the similarities and differences identified from the interviews, the model rather attempts to develop a loose- fitting framework that will inform future research. 9 As the number and variety of people with HIV and AIDS continue to increase, an ability to understand the nature of their different experiences with the illness will be vital. If assistance is to be given, either by service providers or informal caregivers, the capacity to fine-tune strategies for particular individuals and groups may substantially increase their effectiveness A pilot study such as this can be used to identify a range of commonalities, as well an important array of differences, both of which can be incorporated into a dynamic model that will form an important basis for future research. 1.3 Outline of the paper I turn now to briefly outline the structure of the thesis. Following the introduction, chapter 2 embarks upon a comprehensive literature review divided into two primary sections. The first, of course, is the rapidly expanding literature documenting the medical, psychological and social symptoms of HIV/AIDS, and the ways in which these have affected people. In the second, effort is made to explore geographical research for useful analogies to form for the basis for the research proposed in this thesis. Three specific topics are considered: social network analysis; the spatial location of marginal groups; and the study of community attitudes and opposition to difference. Particular reference is often made to work done with service dependent groups such as the homeless and those with mental illness, since their experiences often contain useful parallels. The themes which emerge from the literature review provide the foundations for the theoretical framework developed in chapter 3. Research methodology and interviewee profiles are also presented at the conclusion of this chapter. The substantive heart of the thesis is contained in chapters 4 through 9. Chapters 4 through 8 examine the role of the 10 five factors (individual, social network, services, community, broader context). In chapter 9, findings are consolidated to present a space/time model of post-diagnosis life. Finally, chapter 10 presents a concluding discussion, offering a series of suggestions both for service provision, and future research. 1.4 A note on terminology Throughout this thesis, interviewees and others with the illness are generally referred to as "people with HIV/AIDS." This may appear to be a cumbersome term and the whole issue a matter of semantics, but there is a reason. Although the term "people with AIDS" (or PWA) is widely used, I am concerned that the absence of "HIV" from the label may unnecessarily limit our image of what it is to live with the virus. Often the term "AIDS" produces images of a walking skeleton on the brink of death. In reality, this image is often characteristic only of end-stage, and it may be many years before an individual reaches this state, if at all. Many people will retain reasonably good health despite the presence of the virus, and it is incorrect, and in some cases detrimental, to suppose otherwise. Finally, I have attempted to keep the language gender neutral where appropriate, but during the analysis of the interviews, since all participants were men, use of the male pronoun is appropriate. 11 CHAPTER 2 Geography and HIV/AIDS 2.1 Introduction In recent years, geographers have made many contributions to our understanding of the AIDS epidemic. These benefits have come primarily from efforts to map the origin of the HIV virus (Shannon and Pyle, 1989;1 Shannon et at., 1990; Gould, 1993). and its diffusion at global (Smallman-Raynor et at., 1992), national (Gardner et a i, 1989), and local levels (Greenwald et a i, 1989). However, whilst these contributions are valuable, geographers have yet to fully explore an area of research where their expertise may be equally beneficial; namely the experience of people following diagnosis with HIV. The appearance of HIV, the progression to AIDS, and the manifold complications that accompany these events must, I believe, impact the geography of people’s daily lives. Illustrating the nature, extent and cause of this impact will augment overall understanding of the illness. It may also inform attempts to improve the quality of people’s lives. Ellis provides a recent (and rare) example of this in his study of the migration patterns of people with HIV/AIDS in Florida (see Ellis, 1993; Ellis and Muschkin, 1993; also Tatum and Schoech, 1992). His conclusion that the "geography of AIDS is constantly changing" (1993, 19) holds implications not only for attempts to study the diffusion of HIV, but also for both formal and informal service provision. Regrettably, similar studies focusing on the experience of people with HIV/AIDS are few and far between. However, there is a significant volume of work within 1 See also the criticism which Shannon and Pyle receive in the September 1989 (79, 3) issue of the Annals, Association of American Geographers. 12 geography dealing with broadly analogous topics, and it is to this that I turn to r the basis of the research conducted here. Specifically, three pertinent topics can be identified: the issue of social networks and daily paths; the role and location of other service dependent and marginalized groups (e.g: the mentally ill, the homeless); and the study of community attitudes and the growth of NIMBY (Not In My Back Yard) sentiments. Each of these fields may provide useful tools to begin to comprehend the relationship between geography and HIV/AIDS at the level of the individual. However, before I exam ine them in detail, it is important to understand more about the nature of the illness itself. W hilst comparison between the experiences of people with HIV/AIDS and those of other groups is possible, and indeed advisable, it should be remembered that HIV/AIDS remains an unpleasant and frequently fatal illness. 2.2 Living with HIV/AIDS For the purposes of this thesis, 1 am interested primarily in three areas of study: the physical impact, psychological costs, and social symptoms of the illness, i. The physical impact A basic understanding of the way in which the HIV virus impacts the human body is a precondition for any attempt to gauge the changes that individuals experience following diagnosis. At one level, many people are already aware that the virus is responsible for a progressive deterioration of the body’s immune system, and that, to date, this process has frequendy resulted in death. However a slightly more detailed account is required, because I am interested in the nature of the constraints that the illness places on the individual between the times of diagnosis and death. 13 The Human Immunodeficiency Virus is what is normally termed a retrovirus. This term is used because HIV is one of several viruses capable of reversing the flow of genetic transcription between a body’s DNA and its "go-between", RNA, which under normal circumstances, would subsequently instruct the body’s protein molecules. Once this reversal occurs, the viral DNA is rewritten into host cell’s DNA permitting the production of new retroviruses (Gould, 1993, ch.I). For HIV, much of this genetic mayhem occurs within a set of white blood cells known as T4 lymphocytes or helper T ’s. These cells form an important component of the body’s immune system: they are responsible for the identification of foreign bodies or infected cells within the body, and the activation of other lymphocytes to destroy them (Redfield and Burke, 1988). HIV normally enters the body using one of three pathways: sexual contact (heterosexual or homosexual), blood-to-blood contact (for example, sharing needles during injected drug use), or through pregnancy (Bartlett and Finkbeiner, 1991). Once within the body, proteins contained within the virus envelope rendezvous with CD4 receptors (proteins) on the surface of T4 cells, and the virus and cell then merge, allowing the viral RNA to disrupt the T 4 's DNA. As this occurs, viral RNA and proteins are manufactured within the T4 cell, creating new virus particles which rupture the original T4 membrane with tiny protein buds. The latter then attach themselves to the receptors of other uninfected T 4’s and the process begins again. Research on this process suggests that the T4 cells are subsequently destroyed in one of several ways (Redfield and Burke, 1988). The same process also occurs within other cell types present in the lymph nodes, liver, spleen and brain. 14 Although this process is by no means instantaneous, the net effect is a general decline in the body’s immune system. The virus can, in fact, remain within the body for up to a year before detection occurs, and there may be few symptoms during that time. Even after the first signs of infection occur (frequently swollen lymph nodes accompanied by fever, night sweats, wasting, and so on), it is often several years before the body begins to exhibit a pronounced decline in T4 cells, and this has become increasingly true with the appearance of new anti-viral drugs that retard HIV replication. Unfortunately, once a significant decline in T cell count occurs, viral and fungal infections of the skin and mucous membranes are common. These include thrush, a variety of herpes, and oral hairy leukoplakia, an infection that causes white discoloration on the mucous membranes of the tongue. It is with the appearance of these symptoms that a person is considered to have symptomatic HIV (or AIDS-related Complex, ARC). With a further decline in T cells, infection moves beyond the skin and mucous membranes, and the individual may contact a wide variety of opportunistic infections which include one of a variety of pneumonias and parasitic infections (see Table 2.1). In addition, lowered immunity means individuals are at much greater risk from normally rare cancers, such as the now infamous K aposi’s Sarcoma or AID S cancer (Gould, 1993). It is at this stage that the individual is defined as having AIDS. The T4 cell count has normally fallen below 2(X) cells per milliliter of blood. Although death is by no means certain at this point (some people have lived for more than five years following an AIDS diagnosis), the appearance of these infections usually suggests it is a reality that must be faced. 15 Table 2.1 Opportunistic Infections This listing does not include all known opportunistic infections associated with HIV and AIDS. It contains a brief description of many of the most commonly experienced infections, and particularly those that had been experienced by interviewees. A more comprehensive listing can be found in the AIDS/HIV Treatment Directory (Vol.7, 2, 1994) published by the American Foundation For AIDS Research (AMFAR). 1. Bacterial Infections People with HIV are unusually vulnerable to several bacterial infections. Among the most common arc those that induce pneumonias and enteritis (an inflammation of the small intestine). Sinusitis causing headaches and fever is also common. 2. Candidiasis Candida albicans is the most common fungus to effect people with HIV. It appears on the mucous membranes of the mouth, vagina, esophagus, and gastrointestinal tract, causing white elevated plaques. It causes oral ulcers and makes it difficult to swallow, which may in turn cause nutritional deficits. Oral candidiasis (or thrush) is frequently the first sign of HIV infection. 3. CMV (Cytomegalovirus) A virus common in people with HIV, it is normally held in check by the immune system until the later stages of infection. The most frequent sites of infection arc the retina, colon, and esophagus, although it may also occur in wide range of other places including the lungs, brain, kidneys, adrenal glands, and heart. The symptoms depend on the site of infection, but in the retina it can cause blindness. CMV is generally difficult to treat. 4. Coccidioidomycosis A fungus that typically occurs within the lungs, although may spread in advanced stages to kidneys, lymph nodes, brain, and other organs. Symptoms are non-specific and generally include malaise, weight loss, fatigue, and coughing. Around 60% of people infected with the fungus remain asymptomatic 5. Cryptococcal Meningitis A yeast like fungus that typically effects the brain and also the lungs, but can spread to almost all organs in advanced stages. Symptoms include fatigue, fever, headaches, seizure, and neurological changes. Lab tests suggest that the fungus accelerates HIV production. Treatments are available, but must be administered early and maintained to prevent relapse. Abnormal mental states such as coma, confusion, and so on prior to treatment are significant indicators of early death. 6. Diahrrea and Malabsorption Diahrrea is experienced by most people with HIV/AIDS. It may occur early on or late. It may be sporadic or continuous. Malabsorption occurs when the uptake of nutrients within the intestines is reduced. This occurs because HIV infection causes the cells that make up the villi lining the intestinal wall to become shortened and atrophied 7. Hairy Leukoplakia (HL) Among asymptomatic people, the appearance of this fungus can be a sign of HIV infection. HL normally appears as white lesions on the tongue, and occasionally elsewhere. The lesions tend to have a hairy appearance. 16 Table 2.1 (continued) Opportunistic Infections 8. Herpes Simplex/Herpes Zoster (Shingles) Herpes Simples is actually two viruses, one that effects the mouth, the other effecting the anus and genitals. The symptoms are normally blisters that (ill with pus, scab, and then disappear. The virus is very persistent, and is more severe in people with HIV/AIDS. HSV-1 (the variety that effects the mouth) has been shown to allow HIV to infect cells not normally in danger. For people with HIV, if the virus persists for more that a month, it is taken as an A IDS-defining condition. Herpes Zoster (or shingles) is caused by the same virus that causes chickenpox. The sores produced are similar to those described above, hut outbreaks are limited to areas served by a single nerve (i.c: one side of the body) typically impacting the face or trunk. Neuralgia (persistent pain) may occur idler the sores disappear, but this is not frequent among people with HIV, although the virus itself is often more severe. 9. Histoplasmosis Another fungus that occurs most frequently in the lungs. Symptoms include fever, skin lesions, weight loss, anemia, respiratory problems, and enlargement of spleen, liver, and lymph nodes. Histoplasmosis is common only among those people with T4 cells counts of well below 100/tnm\ 10. Isosporiasis A parasite that invades the intestines and causes diahrrca, cramping, and weight loss. It can be treated effectively. 11. Kaposi’s Sarcoma (KS) The most commonly diagnosed malignancy among people with HIV/AIDS. Although the incidence of KS has declined among gay men, the number of AIDS deaths caused by KS and cerebral lymphoma have increased. KS most commonly involves the skin, but can also affect lymph nodes, oral cavity, and gastro intestinal tract. Pulmonary complications can occur late in the disease, causing severe respiratory problems. KS lesions are frequently red-purple nodules. 12. Lymphoma Lymphomas are any type of uncontrolled growth of cells within the lymphoid tissues. There are two main types: non-Hodgkin’s lymphoma (NHL) and Hodgkin's disease. Among people with HIV, three varieties are observed. The first of these, NHL, is characterized by a great deal of impact outside the lymph nodes, including the central nervous system (CNS), hone marrow, and the G1 tract. NHL is 60 limes more common among people with HIV/AIDS than others. The second variety, CNS Lymphoma is also a non- Hodgkin's lymphoma but it is confined to the CNS. It often occurs during the late stages of AIDS, and early diagnosis and treatment difficulties mean that median survival is under 2-3 months. Symptoms include partial paralysis, aphasia (inability to speak/understand language), seizure, confusion and memory loss. Hodgkin’s disease is the final variety, however some debate continues about whether this is an HIV-related malignancy. 13. MAC (Mycobacterium Avium Complex) MAC refers to 2 similar mycobacterial organisms that normally affect people’s respiratory tracts, For people with HIV/AIDS, MAC can occur in almost any organ system (particularly liver, spleen, and bone marrow). Symptoms are non-specific and include fever, night sweats, weight loss, and anorexia. Enlargement of the liver and spleen are also common. 14. Mkrospor ldlos is A series of parasites that infect people with HIV, they are thought to cause diahrrea and weight loss. 17 Tabic 2.1 (continued) Opportunistic Infections 15. Mycobacterium kansasii A mycobacterial organism that frequently appears in (he lungs, hut it may spread, especially in people with AIDS. It produces fever, coughing and a shortness of breath. 16. Neurological Complications of HIV Infection. CNS and Peripheral Nervous System (PNS) disorders among people with HIV/AIDS can be caused cither by opportunistic infections, neoplasms, or by the primary effects of the HIV itself. Nervous systems may also be altered by the toxicity resulting from medication. It is highly likely that the majority of people with AIDS will experience one or more neurological conditions. The most common opportunistic infections of the CNS are cerebral tnxo-plasmosis, cryptococcal meningitis, and leukoencephalopalhy. As was mentioned above, people with HIV and AIDS are also susceptible to CNS lymphomas which originate within the CNS. The most important CNS complication caused by HIV directly is described using several terms, hut most commonly as AIDS Dementia Complex (ADC). It may be several diseases operating to produce a series of impacts such as slowness of movement, lack of concentration, loss of interest, and so on. The link between HIV and ADC is still not firmly established, but a strong possibility may be the presence of infected cells (macrophages) within the CNS. As well as CNS problems that are specific to HIV, other neurological disorders may complicate the picture (for example: encephalopathies and strokes). In addition, medication may disturb cognition or alertness. 17. Peripheral Neuropathy Neuropathy is an illness that effects the nerves. Two types of neuropathy are common among people with HIV infection. The first occurs early on, prior to susceptibility to major opportunistic infections. The laUcr occurs develops in the later stage of the illness. Among people with HIV, pain in the hands and legs is the most common symptom of Neuropathy. In some cases, the pain may be very severe causing people to avoid bedclothes or shoes. Some anti-viral drugs (ddC, ddl, and d4T) can also induce neuropathy. IS. Pneumocystis carinii Pneumonia (PCP). One of the best known opportunistic infections, PCP is generally classified as a protozoan parasite that infects the lungs, and rarely other sites such as the lymph nodes. Symptoms commonly include fever, coughing, chest tightness, and breathing difficulties. 19. Progressive Multifocal Leukoencephalopatliy (PML) PML is believed to be a rare neurological disease affecting cells within the brain and the CNS. It occurs at a much higher frequency among people with AIDS than others (about 3-4% in former). Symptoms include changing mental status, speech and visual problems, weakness, lack of coordination, and so on. No effective treatment exists for PML as yet, and the disorder progresses rapidly towards death. 20. Salmonellosis Bacteria that are ingested from contaminated food or water. Although infrequent among people with HIV and AIDS, the incidence of salmonellosis is still 20 times higher than in others. Symptoms are mostly non specific: fever, sweats, weight loss. 18 Table 2.1 (continued) Opportunistic Infections 21. SyphiHs/Neurosyphilis A bacteria that enters the lymphatic system and/or blood stream and disseminates throughout the entire body. Almost all organs can be infected, including the CNS. Primary syphilis is characterized by a chancre at the site of inoculation, accompanied by swollen lymph glands. Secondary syphilis can include a rash, and various constitutional symptoms. Neurosyphilis can occur at any stage of syphilis (meningitis and meningovascular syphilis occur early on, general paralysis and wasting occur later). Several people have suggested that when syphilis and HIV occur together, the progression of syphilis may be accelerated. 22. Toxoplasmosis A protozoan that is one of the most common causes of latent infection within the CNS, it most commonly infects the brain producing headaches, confusions, and fever. People with T4 cell counts below 50/mm1 are at much greater risk of developing the illness. 23. Tuberculosis People with HIV and AIDS are particularly susceptible to the mycobacterial organism that causes TB, and once infected, the development of the illness is accelerated due to immunosuppression. The infection, that is normally concentrated in the alveoli of the lungs among others, can spread to other areas within the body for those with HIV, particularly those with low T-cell counts. The classic symptoms of TB are cough, weight loss, fever, night sweats, and fatigue, however among people with HIV and AIDS, these do not necessarily indicate TB. 24. Wasting Syndrome Involuntary wasting or weight loss is one of the most common symptoms of HIV infection. It can occur at any stage, and is indicative of disease progression. Where weight loss is chronic, it is associated with malnutrition which may further depress the body's immunity. 19 As well as the physical impact of lowered immunity, neurological problems and brain damage are also common (Perry and Jacobsen, 1986). During the early stages, memory loss and the deterioration of other cognitive functions are common. These may be induced by the replication of HIV within brain cells, or by the presence of an opportunistic infection such as syphilis. Later, many people suffer from what has been termed AIDS Dementia Complex {Bartlett and Finkbeiner, 1991, ch.7). Although the cause of this syndrome is not wholly clear, it is characterized by a gradual but sometimes acute loss of precision in thought and motion. The preceding discussion offers a brief look at the way in which HIV and AIDS impact the individual. However, the temptation to regard the progression from diagnosis to death as a series of rigidly defined stages should be avoided. As Small (1994, 29) suggests, there is no guarantee that all people with HIV will go on to develop AIDS, and we cannot assume that all those with AIDS will die. Those who say that morale, a sense of alternatives, the encouragement of knowing about those living well with AIDS makes no difference have not spent much time with the ill! W hilst it is certainly true that there are many similarities in people’s experiences, the very nature of the virus implies that they will differ after diagnosis.2 Coupled with the advances in medical understanding, and the variations in individuals own immune response, this fact makes it problematic to generalize about the precise medical consequences of HIV. 1 Although HIV is the real killer because it destroys the body’s immune system, death is normally caused by one or more of a number of opportunistic infections. Hence it is difficult to predict the exact nature of a person’s experience following diagnosis. 20 ii. Psychological cost In addition to the clear physical impact of HIV/AIDS, research indicates that the psychological costs of being diagnosed are also substantial. A variety of emotions such as guilt, shame, anger, depression and denial have been reported among people with HIV/AIDS, and those who care for them (Christ et at., 1986; Stulberg and Buckingham, 1988). Not surprisingly, a major cause of this emotional trauma has been the fact that HIV/AIDS brings with it the prospect of premature death. Much of our understanding about dealing with mortality stems from Kiibler-Ross’ classic work on the stages of death and dying (Kiibler-Ross. 1969). She suggests that, once aware of their condition, the terminally ill typically pass through a series of emotional stages (shock, denial, anger, depression, bargaining, grief, acceptance) prior to death. Kiibler-Ross acknowledges that these stages overlap, the order in which they are experienced may vary, and there is no certainty that a given person wilt exhibit all of them before dying. Nevertheless, the stages provide a vital framework for understanding the psychological impact of facing our own mortality. More recently, Kiibler-Ross has written specifically about the challenge of dealing with HIV/AIDS. Although the work is not organized explicitly around the stage model, it is clear that she believes that the stages to hold relevance for people with HIV and AIDS (Kiibler-Ross, 1987, 1-14). However, in addition to the threat of premature death, several other factors may also work to diminish people’s psychological well-being when dealing with HIV/AIDS. The first of these concerns the period of time prior to diagnosis. In her study of uncertainty in the lives of people with HIV/AIDS, W eitz (1989, 278) suggests that they 21 are more likely than most to know they are at risk prior to diagnosis. In this sense, anxiety about the possible implications of testing HIV positive may have psychological implications for people some time before the presence of the illness is confirmed. This suggestion is supported by studies conducted with the "worried well" within the gay community (Lang. 1991, 67). A second related issue concerns the emotional drain that the diagnosis and death of friends and acquaintances may have upon people with HIV/AIDS. Given the high incidence of HIV/AIDS within the homosexual community, a gay man diagnosed with HIV may know one or more associates also living with the illness. In her study of anxiety and stress among people with HIV/AIDS, Duffy (1994) suggests that the death of an associate may have a substantial effect upon psychological well-being. At one level, the loss induces depression and sadness; at another, the experience may remind people of their own condition. When questioning people about emotional "crisis points" in their lives with HIV/AIDS, Duffy found that the illness and death of others ranked second only to testing in terms of the stress and anxiety it generated (1994, 29). The third factor deals with what Stulberg and Buckingham term "disclosure" (1988, 355). In other words, the appearance of HIV may necessitate revealing a part of one's life that had previously been hidden. For the majority of people with the illness in this country, the term implies revealing one’s homosexuality or bisexuality to family and friends, although it may also relate to the use of injected drugs. In any case, such a disclosure may be forced upon individuals producing additional emotional costs, particularly if the reaction from others is unfavorable. Even where a family is already 22 aware of a person’s homosexuality, diagnosis may work to exacerbate existing tensions (Oberhofer-Dane, 1989, 306). A fourth issue concerns the appearance of debilitating and disfiguring symptoms. I suggested above that HIV and the associated opportunistic infections may do much to damage a person’s physical health. At the same time, symptoms which work to alter the functional capability and appearance of the body may have a serious effect upon their level of self-esteem and overall emotional well-being (Moynihan et at., 1988, 384). W eight loss, muscle wasting, deteriorating sight, skin discoloration (e.g: K aposi’s sarcoma lesions), and a host of other complications may all be responsible for this form of angst. Duffy (1994) again found that physical illness, the appearance of symptoms, and the changes in lifestyle that these necessitated were all significant sources of emotional trauma. Coupled with concerns about bodily deterioration and lifestyle change are fears about loss of control over one’s life and a growing dependency upon others (Stulberg and Buckingham, 1988). Studies indicate that this issue may become particularly problematic when families and friends are overly supportive. As Moynihan et at. (1988, 382) suggest, intervention by family and significant others may hinder people’s attempts to continue meaningful activity, sparking conflict and. in some cases, estrangement. Uncertainty about the progression of HIV/AIDS provides a fifth cause of emotional strain (Weitz, 1989, 278). Although it is well known that the physical and mental impacts of the illness are usually severe, it is hard to predict exactly when, and with what force, symptoms will strike a given individual. For some, life with HIV/AIDS may mean more than a decade of fluctuating health; for others, it may be only a matter 23 of months between diagnosis and death. A related issue concerns what Stulberg and Buckingham term the "roller-coaster-like" course of the illness (1988, 359). As well as an inability to predict the length of time people with HIV/AIDS have left, the nature of life following diagnosis may vary quite significantly with the arrival and departure of opportunistic infections and the impact of medications, something that may make it hard to maintain a positive attitude. A final point to be made concerns a rather more promising impact of HIV/AIDS. As the discussion here illustrates, a large body of research has documented the sometimes devastating psychological impact that HIV/AIDS has had upon people. Yet despite this focus, there is some evidence to suggest that the illness may also have a more positive effect. This can be illustrated using a quote from Callen about his experience with AIDS: While I never would have wished for AIDS, the plain truth is that I’m happier now than I’ve ever been...AIDS has taught me the preciousness of life and the healing power of love. I’ve been more productive than at any time prior. (Callen, 1990, quoted in Schwartzberg, 1994. 593). In a clinical interview study with HIV positive gay men, Schwartzberg (1994) identified several ways in which they had been favorably impacted. These included a feeling that HIV/AIDS conferred a special identity, a sense of community or belonging, an ability to focus on the here and now, a strong belief in an afterlife, and an ability to deal with paradoxical thoughts, feelings and beliefs. Other work has also documented positive changes in the lives of gay men with HIV/AIDS (Viney et al.. 1989; King 1989). iii. Social symptoms W hilst research into the medical and psychological dimensions of HIV/AIDS are important topics within HIV literature, an understanding of the related social implications 24 of the illness has also been an integral part of efforts to ameliorate its negative impact. As Franzini (1993, 71) suggests: The fear of acquired immune deficiency syndrome (AIDS) is easier to transmit than the disease (sic) itself. Pierce and VanDeVeer (1988) also suggest that we must now search for two cures; one for HIV, the other (in metaphoric terms) for the public hysteria that surrounds it (also Muir, 1991, 66). Whilst assertions of this kind may overstate the significance of social symptoms (particularly since the discovery of a cure for the illness would do much to relieve the broader social pressures) it would be a mistake to attribute all the hardships that have befallen people with HIV/AIDS to the illness itself. People with HIV/AIDS, their families, associates, and care-givers have often encountered a hostile social environment. The diversity of reported incidents of discrimination provides some indication of the strength and pervasiveness of the adverse social response to HIV/AIDS. At its most extreme, prejudice has been evidenced in acts of physical violence and other forms of destructive behavior. Several writers have suggested that HIV/AIDS has acted as a catalyst to rekindle the fires of homophobic violence (Berrill, 1990; Berk, 1990; Herek and Glunt, 1988). Others, such as Sabatier (1987), report increased levels of violence directed against prostitutes because of their image as vectors of the HIV virus. In the introduction to his edited work on culture and AIDS, Feldman (1990, 5) notes several incidents including a now infamous arson attack on the Florida home of three young hemophiliacs who had contracted HIV. O f course, these high-profile incidents are only the tip of the iceberg. In response to their survey, the American Civil Liberties Union recorded a total of some 13,000 25 complaints of HIV-related discrimination (ACLU, 1990). This figure must be regarded as a low estimate because less than one half of the agencies and organizations questioned returned their surveys, and also because people with HIV/AIDS may be unwilling to report negative social reaction for fear of further increasing their visibility and vulnerability. Many forms of discrimination occur on a daily basis, denying individuals and families access to a variety of much needed resources, including employment (ACLU, 1990; Gevisser, 1988) and health care (Tindall and Tillett, 1990). One effect of such exclusionary practices can be seen in the fact that some 50% of seropositive patients questioned by King (1989) had not reported their status to their local doctor for fear of a negative reaction. Reports also indicate that a significant proportion of doctors, dentists,3 nurses and other medical workers have exhibited highly negative attitudes towards patients with AIDS (Rogers and Ginzberg, 1989; Quam, 1986 and 1990). Gee (1989) found that a little under a fifth (18%) of those nurses surveyed would prefer to avoid contact with people with AIDS, and 16% felt that they should not be obliged to care for them (Schwarz, 1989, for a similar study of physicians’ attitudes). Discrimination has also been experienced by people attempting to apply for or claim medical insurance. A recent incident made headlines when a company attempted to slash comprehensive health coverage for an employee with AIDS to a one-time payment of $5,000. (Hunter and Rubenstein, 1992). Elsewhere, Kass et al. (1991) found J On a more positive note, the Justice Department announced two civil lawsuits earlier this year against two dental practices which refused to treat people with AIDS. These suits stemmed from complaints filed under the provisions of the Americans with Disabilities Act which was introduced in January of last year (Ostrow and Cimons, 1993). 26 in a study of more than 1,5(X) people that people with AIDS were 33 times more likely to have M edicaid, and 5 times as likely to have lost coverage than persons without AIDS. It is not only private firms that have acted to restrict access to health care. Increasing numbers of people with HIV/AIDS are dependent upon the resources offered by the public health system. Regrettably, difficulties associated with the Medicaid system are exaggerated for people with HIV/AIDS, since they must deal with additional dilemmas such as inadequate coverage for prescription charges (Hunter and Rubenstein, 1992). Housing and accommodation are others arenas in which discrimination and prejudice have been reported. Ostracism from neighbors and the community as a whole may force individuals and families out of accommodation. Such a reaction may be particularly acute for forms of accommodation designed explicitly for people with AIDS (Takahashi, 1993; Dear. 1992). In other instances, landlords may simply refuse to let apartments to seropositive people for fear of alarming other tenants. At the most personal level, the appearance of HIV/AIDS can bring with it prejudice and exclusion. Friends and family members may withdraw when the news of the illness emerges (Powell-Cope and Brown, 1992), causing fragmentation of social networks and a subsequent reduction in the individual’s coping ability and self-esteem. Aranda-Naranja (1993, 27) documents one m other’s attempt to conceal her son's HIV- positive status and so avoid the associated stigma: I always lived in fear of my neighbors finding out. 1 just told ...|them ) that he had cancer but I wish 1 could have told them the truth. Lang (1991, 61) reports that even within the gay community, diagnosis may lead to a weakening of friendships and the loss of a lover, although this may be the result of 27 bereavement overload, rather than straightforward rejection. A sim ilar phenomenon is described by Kowalewski (1988, 213) in his work on boundary maintenance within the gay community. He suggests that HIV negative gay males seek to maintain "social farness" from others with HIV/AIDS using a variety of physical and symbolic techniques. W hat causes these negative social reactions? To begin to understand, it is necessary to consider the interrelationship between disability/illness and the surrounding social context. This link has been emphasized with reference to people with physical disabilities (Golledge, 1993; Fine and Asch, 1988; Hahn, 1986 and 1988), but also for people with HIV/AIDS (for example Muir, 1991; Sontag, 1989). In these instances, it becomes clear that illness or disability of any kind has little meaning by itself. Only when it is inserted into an encompassing social context reflecting the values of the non disabled or the non-infirm, does it become both different and burdensome. Goffman (1963, 2-3) suggests that stigma can be defined in simple terms as the perpetuation of a discrepancy between an individual's or a group’s virtual (ideal) and actual social identities. For people with HIV/AIDS, this discrepancy appears to be a product of three things; their association with an illness that threatens bodily disfigurement and death; the fact that the illness is a transmissible virus; and a belief that this virus is associated primarily with socially marginal groups (Brandt, 1985; Douard, 1991; Sontag 1989). Bodily disfigurement and impending mortality It is perhaps no surprise to discover that HIV/AIDS has a strong link with bodily disfigurem ent and death. Despite the development of drugs to help ameliorate and slow the symptoms of the syndrome, little real success has been achieved in the search for a 28 cure. In addition, it is widely known that dying from AIDS can be a prolonged and unpleasant process. Because of its link with bodily disfigurement, HIV/AIDS threatens us with a potential "loss of humanity". As Sontag (1989, 126) suggests: [The) m ost terrifying illnesses are those perceived not just as lethal, but also as dehumanizing. This remark has implications both in terms of the functional limitations that illness imposes, and the accompanying erosion of the body’s aesthetic value. On the one hand, as the illness worsens, people with HIV/AIDS become less and less able to perform the tasks that society expects an "able-bodied" person to be capable of. In many ways this is the same type of stigma identified by Golledge (1993) in his analyses on the problems facing the blind. The inability to perform an accepted role within a given social context clearly marks the person as different which is in turn equated with inadequacy and burden. On the other hand, as the symptoms of HIV/AIDS become increasingly apparent, the person’s body may begin to lose what we might call its "aesthetic integrity" in the form of a progressive mutation, earning the label of other. The strength of feeling surrounding acceptable bodily images is such that we, as a society, have become highly adept at singling out the abnormal (Gilman, 1988). HIV/AIDS also confronts us with a stark reminder of our own mortality, something that we are often at pains to avoid (Jones, 1984 in Quam, 1990). Efforts to maintain an appearance of wholeness and timelessness to our lives often necessitate that we exorcise any internalized fear of personal demise. In this way, ii becomes not us on the brink of collapse, but some externalized "other" (Gilman, 1988, c h .l; Gilman, 1991; M acKinnon, 1992, ch. 10). As Ross W ilson (1988, 40) cogently argues: 29 Death in our culture is not a kindly god looking to bring his (sic) people back into his (sic) presence. It is a skeletal figure stealing people into the realm of darkness. AIDS is death, out looking for victims. An intense fear of our own fragility, whether in aesthetic terms or generated through a fear of functional inadequacy and eventual death, continues to be a central com ponent of "Western" culture. As a result, people with HIV/AIDS may be swiftly consigned to a form of social limbo, helping to maintain the boundary between "us" and "them," but also tending weight, in practical terms, to the assertion that people with the virus should be removed from social life since they are no longer whole individuals (Sontag, 1989, 173). The transmission of HIV The fact that HIV is contagious has also generated widespread public concern, particularly since we live in a culture that has, for the most part, consigned the threat posed by epidemics to the past (Brandt, 1988). However, in addition to its epidemical status, HIV has also attracted significant adverse reaction due to the nature of the vectors and methods of its transmission. HIV is transmitted through blood and sexual contact. and this association is perceived as a threat to the individual, since it raises the possibility of what Muir calls a "fundamental contamination" (Muir, 1988, 70; also Jakobi, 1991). The underlying etiology of this reaction is complex. Douglas (1980) has emphasized that blood, semen, urine, and other bodily fluids have come to represent a mixture of pollution and danger in W estern culture. Douglas contends that our aversion to bodily fluids is intimately connected to the symbolic function that the human body plays as a bounded social system (1980, 115). The aversion arises because the body, like society, has boundaries— points at which what we identify as part of ourselves meet an external other. 30 It is at these boundaries that the body (social or human) must face danger. The body’s orifices symbolize the weakest points of our defenses, and as a result: ...matter issuing from them is marginal stuff of the most obvious kind ...[havingl traversed the boundaries of the body (1980, 121). The appearance of HIV/AIDS has meant that this fear of symbolic contagion has been mixed with, and strengthened by, the threat of physical contagion. Emphasis on blood and semen as the primary vectors of the virus, coupled with the continuing inability of medical experts to guarantee the safety of casual contact (Brandt, 1988, 368; also McCombie, 1990) has only served to reinforce our anxiety towards the margins of the body and the materials that issue from them. Associated social groups The reaction to bodily fluids as vectors of the virus is only one component of the stigma surrounding the transmission of HIV. In addition, the virus has a strong connection with several stigmatized social cohorts. Pryor et at. (1991) in their study of reactions to HIV in the workplace found that negative reactions towards people with HIV/AIDS occurred either because of instrumental concerns (e.g. fear of contagion) or more symbolic issues (e.g. hatred of gays). Stigmatized groups include the gay community, injected drug users (IDU's), ethnic minorities (especially Haitian), as well as others including male and female prostitutes. The association has had two primary implications; increased visibility and a growing burden of stigma. The gay community has been most closely associated with HIV/AIDS. In numerical terms, this comes as little surprise, given that a majority of the people that have contacted HIV within the U.S. over the last decade or more have been gay, yet the link 31 goes far beyond a simple per capita correlation. Homosexuality has been portrayed by some as a direct challenge to established Christian morality, threatening to disrupt the existing contours of sexuality and gender, and, hence, throw the world into some form of unnatural disarray (Sontag, 1988; MacKinnon, 1992; Jakobi, 1991). The power of organizations like M oral M ajority and Religious Roundtable, and their influence in the country’s Republican party has meant that many millions of Americans have been exposed to messages portraying homosexuality as wrong, and AIDS as the Lord’s method of correction (Brandt, 1988, 368). The association of AIDS with the homosexual community in the United States has remained strong despite the fact that, globally, HIV is transmitted predominantly through heterosexual intercourse (Gould, 1993). The political mileage gained from this link has made it both expedient and relatively simple to ignore the broader international context and the changes in the morphology of the epidem ic at the national level, as rates of increase of infection among women have overtaken those of men (Center for Disease Control, 1993). A second group, injecting drug users, have also suffered stigmatization as a result of the label that society has attached to them. The appearance of AIDS amongst the drug-using population has meant that legal and moral transgression is now inexorably mixed with the threat of death. This type of imagery serves as a persuasive reminder to the general public to keep their distance, despite the fact that neglected individuals may now be suffering from double or even triple diagnosis (drug addiction, HIV/AIDS, homelessness). As McCombie (1990, 15) suggests: For the layperson, when the topic is an infectious agent that produces human suffering and death, the question of origin becomes confused with the idea of 32 responsibility. Disease (sic) is considered unnatural and the genesis of the disease is best placed as far from ’people like us’ as possible. The (visible) gay community and IDU’s are sufficiently removed (both socially and spatially) from the general public to serve as convenient scapegoats for the continued diffusion of the virus. The same can also be said of the third group mentioned here; ethnic minorities. Partly because they are over-represented among the homeless, among ID U 's, and among the male prison population, minority groups (primarily African American and Latino) have provided an additional destination for the projection of anxieties surrounding HIV/AIDS. Just as we attempt to maintain the image of the individual body free from pollution, so too have we sought to retain the purity of the social organism as a whole. In the U.S. (and elsewhere) such a strategy has proceeded by attributing the origins of the virus to a foreign "body" that has infiltrated the borders of society. Here again, the successful placing of blame upon forces beyond our (geographical and/or corporeal) borders and therefore beyond our responsibility, permits a reduction of anxiety as we distance ourselves from the source of pollution/infection. Distancing also provides a convenient target for aggression (Mackinnon, 1992). In addition to the homosexual community, injecting drug users, and ethnic minorities, a second category of people associated with HIV/AIDS exists; those that carried little or no negative stigma prior to the onset of the epidemic. This category consists of a wide range of groups, including hemophiliacs, health care workers, and children. People within this category appear to play two contradictory roles. On the one hand, they are identified as innocent victims because the virus was not contacted through 33 "deviant behavior". On the other hand however, despite their innocence, they have been "polluted", and must suffer the consequences; a fact that continues to be evident in the ostracism experienced by children and people with hemophilia diagnosed HIV-positive (Blendon and Donelan. 1989; ACLU, 1990; Feldman, 1990). The stigma attached to HIV/AIDS continues to have a deleterious impact on the day-to-day lives of a great many individuals. Equally disturbing is the fact that many surveys of public attitudes towards people with HIV/AIDS report that a majority of those questioned would favor restricting the civil rights of these individuals in an attempt to control the epidemic. Blendon and Donelan (1989) suggest that people with AIDS may expect to encounter a significant minority of people displaying signs of intolerance and outright hostility towards them. Their survey suggested that a little under a third would favor tattooing people with HIV/AIDS, whilst 17% would support confining those infected to an isolated island! They also reported that 80% of those questioned thought that the control of the epidemic should take precedence over a person’s privacy (also Hogan, 1989; W inslow et al., 1990). People with HIV/AIDS must suffer this hostile climate precisely when they are most in need of social support. One of the greatest dangers is that more and more people will be unwilling to test for the illness for fear of stigmatization, and the epidemic will be driven deeper underground. Dealing with the physical and psychological demands of the illness is an arduous task, but significant evidence exists to suggest that the task is made even more problematic when self-esteem is low, personal relations are strained, and access to much needed resources is limited (Lang, 1991; Small, 1994). 34 2.3 Social Networks and Daily Paths I suggested above that little work has been done within geography on the experience of people with HIV/AIDS. To find useful analogies within the discipline, three areas must be explored, the first of which deals with the related notions of social network and daily path. In basic terms, a social network can be defined as the sum total of people that an individual knows, and from whom support can be obtained (Rowe and W oleh. 1990; Lopata, 1975). It is common to distinguish two sub-categories of the social network; formal and informal. The first consists of those with whom we would normally interact in a formal manner, for example employers, service providers, and so on; the second, of those people with whom we are more familiar, and hence more at ease, on a personal level (families, friends, partners). It is also common to distinguish three types of support that may be obtained from a network; material, emotional and logistical (Rowe and W olch, 1990). The importance of social networks as influences on peoples* lives cannot be underestimated. Fischer (1982, 3), for example, states: It is through personal connections that society is structured and the individual integrated into social life. Although modem nations have elaborate arrays of institutions and organizations, daily life proceeds through personal ties. Although it seems problematic to separate individual and institution so easily,4 Fischer’s statem ent is nevertheless pertinent. For many of us, life is often conditioned most heavily by the influence of the friends and family that constitute our social network. This is 4 see Foucault's (1980) work on the concept of micro-powers, and the role of individuals as vehicles for the dissemination of broader institutionalized authority. 35 echoed by McKinlay (1973, 288): A major source of any individual’s orientation and behavior are the values and norms of the groups or social networks to which he (sic) relates himself- his reference groups. As Fischer further suggests, we each build our network, but the choices that we make are not free choices, rather we are constrained by a whole variety of different factors. For him then the most severe constraints are posed by the social contexts in which we participate (1982, 4). In an earlier study, Fischer and Phillips (1979) reported that social characteristics were strongly related to the shape of one’s social network. Among other things, their study identified characteristics like employment, class, gender, life-cycle stage, and family/friend mix as significant determinants of the nature of the extent and quality of one’s social network. Such a viewpoint can be related directly to the issue of living with HIV/AIDS. Socio-economic status, gender, ethnicity, age, sexual orientation, and so on are all important determinants of an individual’s identity and location, and the particular blend of these characteristics will be responsible, at least in part, for the impact that HIV/AIDS has upon the extent of a given person’s world. Socio-economic status, for example, may be illustrated here. Bechtel and Swartzberg (1993, 213) suggest that: W hen individuals must expend limited resources to meet basic financial needs, there may be minimal energy left to maintain support systems. Hence, a lack of resources combines with a debilitating illness to represent a serious constraint upon the individual's quality of daily life, and their ability to maintain network of support. The initial definition of "social network" must be expanded however, because a social network has clear spatial and temporal dimensions: spatial in the sense that 36 different individuals belonging to a social network exist within specific places; temporal in the sense that time is necessarily expended both during encounters and in the periods when we move between them (Fischer, 1977; Rowe and W olch, 1990; W allace, 1991 and 1993). Therefore, a given social network can also be seen as time-space map recording a set of repeated social interactions. The fact that different individuals create and maintain a whole variety of social networks suggests that the geographies of these networks will also exhibit significant variations (McKinlay. 1973, 290). This is true for different individuals, and for different stages during an individual’s life-cycle. Friends, families, acquaintances, as well as the more formal elem ents of a person’s network are all rooted in different places, and different parts of the network are visited for a variety of reasons. W ork, leisure, sleep, food and education usually take place within different settings. On a given day, the sum of these social encounters constitutes a "daily path". As Rowe and Wolch (1990, 190) point out, for many people the primary foci of their daily paths are the home and workplace— points of constant return, essential function, and intense interaction. Over longer periods of time, daily experiences combine to produce a cumulative life path, which simultaneously represents both end-result and context of our actions. On the one hand, each new day of activity adds an additional layer to the composite of experiences that form the life path; yet on the other, as previous experience expands, it acts to both constrain and facilitate efforts in future daily paths. The sum total of our experiences is, of course, a strong influence on our identity and self-esteem (Pred, 1985). W here daily paths remain similar for extended periods of time, individuals are 37 increasingly identified with a particular set of activities and a distinct collection of locations, creating time-space continuity. W hilst such continuity is often equated with stability and reduced anxiety, it is necessary to remember that the resulting identity may be undesired, for example the drudgery of a mundane job or the unpleasantness of a rundown apartment (Fischer, 1982, 3). In the field of time-geography. work has explored the ways in which individuals are constrained in their daily activities. In general, four types of constraint are identified: capability, coupling, authority, and capacity (Palm, 1981). Capability constraints refer to biological limitations of the individual, as well as the limits of available technology; e.g. the body needs regular sleep and nutrition, and we do not all have access to a car. Coupling constraints refer to the familiar adage "you can’t be in two places at once". Choices must often be made between different destinations/activities if time is limited and/or distances great. The third type of constraint. Authority, refers to the limiting of access through rules, laws, customs, and so on. This may be a formal creation such as membership in a particular organization or club, minimum age requirements, and so on; it may also be informal or unspoken (for example, discrimination). The final category is that of Capacity constraint. This refers to the flexibility of a particular activity/destination; i.e. whether there is a limit to the number of people it can accommodate at a given point in time. A pressing question when examining social networks concerns the impact of traumatic incidents upon a person’s everyday existence; in other words, the appearance of discontinuity. Loss of employment, for example, may have important repercussions. 38 not only in terms of eliminating the work place and colleagues from the individual's network, but also through restricting the individual’s ability to maintain other elements of the network because of financial constraints, and so on. In another example, substantial research into the experience of the homeless has indicated that when one or more traumatic experiences combine to push an individual (or family) over the edge and into homelessness, the consequent destruction of the social network can be quite devastating (Rowe and Wolch, 1991; Wolch and Dear, 1993; Rossi, 1989; Cohen and Sokolovsky, 1981 and 1989). Both spatially and socially, major changes can be expected. Old contexts become increasingly inaccessible, either as a result of physical distance or some other constraint (financial, psychological, social). Old contacts may dwindle or disappear; new ones must be forged. As Fischer suggests, the particular characteristics of the people and places around us dictate our subsequent potential for action. For the homeless, evidence suggests that the people and places that constitute their daily environments, although often vital components of a support system, are not conducive with an exit from homelessness (Dear, 1987). W here traumatic incidents disrupt existing social networks and daily paths, life may become a day-to-day struggle to get by. In these instances, people may be forced to use a variety of strategies to make ends meet. Again, research on other service dependent groups provides some useful parallels with the challenges faced by people with HIV/AIDS. A large number of studies have documented the shifting and sometimes delicate methods used by people to deal with life on the streets (see Hopper et a i, 1985; Cohen and Sokolovsky, 1989; Koegel et at., 1990). W olch and Dear (1993, ch.9) provide 39 an exhaustive synthesis of these strategies. They suggest that coping mechanisms among the homeless are either adaptive (i.e. cognitive and psychological adjustments) or material (used to obtain goods and services) in nature. Adaptive strategies entail the use of social ties, personal mobility, alcohol and drug use, and altered physical appearance. Material strategies include use of remaining personal possessions, access to public assistance and voluntary organizations, employment, use of the urban environment, and support from social networks. Similar research has also been undertaken for the mentally ill. W ith the waves of deinstitutionalization that have occurred in recent decades, a large number of mentally ill people have had to cope with the complexities of life in a community setting. A wide range of studies indicate how difficult this has often been (Smith. 1978; Froland et al.. 1979; Dear et al., 1980; Kearns et al.. 1987; Smith and Giggs, 1988). In particular. Laws and Dear’s (1988) discussion may hold useful parallels for the research conducted in this thesis. To conceptualize the difficulties involved in community living for a given individual with mental illness. Laws and Dear suggest that several dimensions of coping can be identified. These include the specific characteristics of the individual in question, their institutional experience, the nature of the community in which the person resides, and the shape of built environment around them. Although the dimensions will undoubtedly vary for people with HIV/AIDS, this approach may provide a method for understanding their experience. For people with HIV/AIDS then, a scenario may be envisaged from the point of diagnosis onwards, whereby the discontinuity induced by the appearance o f HIV and. 40 subsequently, of AIDS may lead to a sometimes fundamental renegotiation of the people and places that constitute daily life. However, as I suggested above, attempts to evaluate the impact of HIV and AIDS in an explicitly spatial way are few and far between. Several studies have used the social network in analyses of people’s ability to deal psychologically with the threat of death, and the subsequent pressure that this task places on friends and family (Lang, 1991; Adelman. 1989; Bechtel and Swartzberg, 1993). The great variety of responses that these and other studies recorded are indicative of the diversity of people with the illness, and the mixture of resources that each one is able to draw upon for support. Lang (1991, 71) in his study of gay m en’s ability to maintain self-esteem following an HIV diagnosis, found a different situation for each of his case- studies. As he comments; these scenarios are the many faces of AIDS and the various ways it affects the lives of the members of this group of gay males. Within the gay community, and more generally, divergent views about the role of the social network exist (see Catania et al., 1992; Kowalewski,1988). Yet despite the value of this work, few studies have commented on how the characteristics of the network might influence the extent to which diagnosis and the subsequent presence of the illness work to diminish the spatial extent of a person’s world. Elsewhere, Wallace (1991 and 1993) has used the concept of "sociogeographic network" (a social network embedded in space) to explore the spread of the HIV virus within the Bronx section of New York. the spread of AIDS cannot be disentwined from examination of more general and underlying political, social, economic and geographic structural factors within which disease transmission is embedded" (1991, 1159). 41 W hether we are concerned primarily with the diffusion of the virus, or the subsequent impact that it has upon people’s lives, little is learned without an appreciation of the surrounding context. W hilst this statement may not appear out of the ordinary, the em phasis placed upon geographic location is frequently absent; the interplay between the social and the spatial, often overlooked. If we follow W allace, social identity and spatial location are intimately connected. Therefore, discontinuity in a person’s social identity- caused, for example, by a positive HIV diagnosis--may also place the established spatiality of their life at risk (and vice versa). The absence of social and spatial fixity com plem ent and reinforce one another. Again, research into the experience of the homeless offers useful parallels. Several studies have suggested that becoming homeless for the first time is indicative of this type of crisis. The loss of a place to live, and the commonly related problems of unemployment and increasing isolation from friends and family can substantially erode the existing basis of an identity whilst the person is forced to wrestle with a new and often ill-fitting homeless persona and at the same time, a new and sometimes alien environm ent (Snow and Anderson, 1987). Research has also shown the importance of space as a resource for dealing with the problems of homelessness. Snow and Anderson (1987, 1348) again suggest that the ability to procure and/or arrange physical settings represents one elem ent of strategies that allow people to construct acceptable personal identities whilst on the streets. Hopper et at. (1985) also document the multiple roles that public shelter space played for homeless people (also Rowe and W olch, 1990; Wolch and Dear, 1993). 42 Mention of public shelters reminds us that part of the renegotiation of one’s social network following a traumatic experience, such as the onset of homelessness, mental illness, or indeed HIV/AIDS, is often an increased reliance upon a variety of service providers (Dear et al., 1994). The importance of these services lies in their function to replace or supplement other components of a person’s network (both formal or informal) in those places, and during those times when such deficiencies exist, as well as their ability to offer a range of other more specialized services (such as medical care..etc). Client/provider interaction is not always without difficulty however. Research among service dependent populations, and more generally, indicates that a small but significant number of people may prefer to avoid agencies altogether (McKinlay, 1973; Koegel et al., 1990; Schutt and Garrett, 1992). Despite these difficulties, agencies often provide a range of important services and resources. For people with HIV/AIDS, these may be especially vital for several reasons. Over time, informal sources of support may become increasingly strained, and social isolation may grow as a result (W olcott et al., 19X6). As Adelman (1989, 36) suggests. serious, chronic illness places unrealistic demands on supporters, depleting personal resources such as time, physical and mental energy, and finances ... Yet who cares for the caregiver? The unpredictable course of HIV and AIDS suggests that family and friends who function as informal caregivers may find the task of matching their support with the person’s needs at a given time a particularly arduous and draining task. Overprotection or insufficient care can have a deleterious impact on both the supporter and supported alike. In addition, research suggests that the emotional impact of diagnosis upon the individual may induce 43 withdrawal, causing him or her to disengage from established sources of support (Gambe and Getzel, 1989). The presence of formal service providers may be instrumental in filling the gaps that begin to appear in the support available to the person with HIV or AIDS, whether they be emotional, material, or instrumental (Sonsel et al., 1988; Stulberg and Buckingham, 1988; Gambe and Getzel, 1989). As well as the services and resources that agencies make available, many also represent locations that must be incorporated into the individual’s daily path. At one level, service agencies as places offer the chance to reestablish some degree of time/space continuity within day-to-day life. Among service dependent populations, this is particularly true for the homeless since they are, by definition, without a fixed homebase, but it may also be true for people with HIV/AIDS. Loss of employment, and a restriction of other activities through a combination of declining health and social constraints may significantly diminish the geographic extent of people's daily environments. As locales accessible to people with HIV/AIDS, service agencies may help to counter this trend. However, significant evidence exists to suggest that service agencies do not always simply augment an individual’s social network/daily path, but may, in fact, come to dominate it. Literature documenting the experience of other service dependent groups suggests that the conditions for eligibility, times of operation, and location of different services may distort the shape of people’s daily paths. Securing the necessities of life thus becomes the primary, and often sole focus of each day, with daily activities locked into a constantly repeated sequence of spatial coordinates (Kallenbeck and Lyons, 1989; Reich and W olch, 1988). 44 2.4 The geography of "marginal" groups A second related area of interest within existing geographical research concerns the geographical location of marginal sections of the population. In recent decades a growing number of studies have begun to examine the relationship between social process and spatial structure with explicit reference to those groups who occupy the lower levels of the social hierarchy. Much of the impetus for this work has stemmed from the reinvigoration of the spatial dimension of an increasingly postmodern social theory. In the realm of the everyday, the environment— the space around us— is frequently viewed as a common-sense entity. Space exists merely to underlie social practices, to form a back-drop for the unfolding of myriad individual life stories; in other words, space just is. Yet, such a view is untenable. Different individuals, groups, and societies experience space and place in unique ways (Relph, 1976; Tuan. 1977), and it is highly problematic to entertain the notion of a single unitary meaning of space. An example of thi s is G olledge’s (1993) study of the problems faced by blind people attempting to cope with what is essentially a visually navigated urban environment. Problems arise, in this situation as in others, primarily because the needs of one group are subordinated to those of another; a subordination subsequently expressed in the shaping of the landscape. From the outset, efforts to revitalize the spatial dimension of social theory have required an understanding of space that is unaccepting of its passive ness within the social world. Many recognize that time and history have typically maintained positions of dominance in theorizing for perhaps a century or more, whilst space: "was treated as the dead, the fixed, the undialectical, the immobile" (Foucault, 1980, 70). To counter this 45 view, recent years have seen the emergence of a number of important texts explicating the complex relationship between society and space (Lefebvre, 1991; Gregory and Urry, 1985; Soja, 1985 and 1989; Dear and Wolch, 1989). Chief among these has been Henri Lefebvre’s work on the production of space. His work has sparked a proliferation of studies reexamining the role of social space (also Foucault, 1968, 1977). O f particular importance within geography has been Soja’s (1989) contention that time without space has little meaning, and that these two dimensions together must always contain some form of material process. This leads him to offer a view of society generally as a triple dialectic of space/time/being. Increasingly, space has been asked to assume a far greater role in, and responsibility for, the ongoing operation of society. Social space is bound up with the mechanisms of society; it forms a medium for action, but it is clearly neither neutral nor passive since it can both constrain and facilitate action through time. Soja (1989) asserts that because of this a priority in future theorizing must be an awareness of how relations of power and discipline are inscribed into the apparently innocent spatiality of social life. Space is produced by society, but in the process it is imbued with all the facets of that society; the modes of production and reproduction, the inequalities, the struggles are all given spatial expression. This portrayal of social space as a "landscape of power" has been seized upon enthusiastically by many within Geography and elsewhere, and it from this conception that the literature documenting the lives and experiences of many groups marginalized (both socially and spatially) by the larger social body has emerged. 46 Much has been learned, not only about people’s immediate situations, but also about the relationship that each group has with the larger social body, and the underlying causes of those relationships. In addition, there has been, and continues to be, a much greater recognition of the spatial dimensions of these relationships, and the role that space plays in not only representing, but also sustaining existing patterns of domination and subordination. Many different groups have been recognized in this research, which has been both contem porary and historical; theoretical and practical in nature. These groups have included women (Hayden. 1981; McDowell, 1983; Monk, 1992; W inchester, 1992); the mentally ill (Dear and Taylor, 1982; Dear and Wolch. 1987; Smith and Giggs. 1988; Philo, 1989), the physically disabled (Golledge, 1993; Hahn, 1986, 1989), the homeless (W olch and Dear, 1993; Burt, 1992; Rowe and Wolch, 1990) gay men and lesbians (Castells, 1983; W inchester and W hite, 1988; Moos, 1989; Valentine, 1992, 1993), and gypsies (Sibley. 1981, 1992). From these and other studies comes the awareness that space is an integral part of the power struggles that are won and lost within the ongoing dynamics of society. Many of these groups have been and continue to be wholly or partly unable to choose how they inhabit or make use of social space. These constraints range from the permanent institutionalization suffered by the mentally ill (Dear and W olch, 1987; also Foucault, 1965) to the more subde and temporally variable sanctions felt by the lesbian couples described in Valentine (1992, 1993). In each case, the group’s location and ability to control the space around it are indicators of its current social status, and exist as conditions for its future action. A brief example can be provided from research on the Al homeless. Homeless people, by their very nature, are at the base of the socio-spatial hierarchy. On the one hand, their status and location constitute an indication of the social processes which have combined to decimate so many peoples’ lives; on the other, their existence, without the ability to gain access to the security of a fixed place (i.e: home) that many of us take for granted, by necessity, forms an intensely problematic context for future action (Dear and W olch. 1993), reinforcing their role as "space takers" rather than "space makers." As Baldassare (1977, 114) states: space is a resource, and the consequences of spatial constraints depend on individuals’ abilities to command the space they need to do what they want. This, in turn, depends on the power that certain individuals have over the activity of other[s] (also Lefebvre, 1991, 26). Location and stigma are also intimately connected. With the use of boundaries (both symbolic and physical), certain places come to be associated with various groups defined as "other". Once such an association is established however, the locale itself assumes the burden of stigma carried by these groups; presence within the former is tantamount to identification with the latter. As Philo suggests in reference to the historical experience of the mentally ill: The practical consequence of having a network of ’closed spaces’ devoted specifically to mad people was to produce and then continually reproduce a population designated as different, deviant, and dangerous by 'm ainstream ' society" (in Sibley, 1992, 1()9). Inquiries into the experience of marginal sections of the population have taken place at a number of different scales. Aside from the analyses considered above, a growing literature concerned with the space of the individual body may also be of relevance to this thesis. Space has entered discourse on the individual at many different 48 junctures. As a part of his attempt to rethink social theory, Soja (1989, 132) situates space at the very heart of existential being: Spatiality is present at the origin of human consciousness for it perm its— indeed it presupposes— the fundamental existential distinction between being-in-itself (the being of non-conscious reality, of inanimate objects) and being-for-itself, the being of conscious human persons. Elsewhere, considerable debate has also been conceived around the subject of the individual body as a target for the application of power (see Giddens, 1981; Driver, 1985; Philo, 1989). A central motivating force within this debate has been Michel Foucault’s work on the refinement of disciplinary techniques during the eighteenth and nineteenth centuries, and their utilization to create a new politics of the body. The totalizing institutions of the era (the insane asylum, the prison, and so on) are portrayed by Foucault (1977, 138) as ideal representations of these mechanisms of power, yet he also believed that the forces of surveillance and normalization would transcend the boundaries of those creations, diffusing throughout society to create what he termed the "carceral archipelago"; a segmented network of cellular spaces invested with a new micro physics of power. For Foucault (1977, 170), a premise of the disciplinary techniques that were being created during this period was that they would function by means of surveillance. Surveillance would be effective because it was assumed first that deviance and difference would be clearly visible; and second, that the seeing of deviance would itself be an act of normalization. He states: The exercise of discipline presupposes a mechanism that coerces by means of observation; an apparatus in which the techniques that make it possible to see induce effects of power, and in which conversely, the means of coercion make those on whom they are applied clearly visible 49 The surface of the body thus becomes a landscape upon which the characteristics of the individual are inscribed (also Gilman, 1985; Young, 1990, ch.5). Similarly, Young illustrates the impact that the normalizing gaze of science had upon the individual body during the nineteenth century. Objectifying surveillance allowed for an aesthetic scaling of bodies; the youthful and beautiful at one end. various degenerates at the other (1990, 128). Here again, corporeal space was thought to contain clear indications of the individual’s person’s moral worth. More contemporary studies have also focused on the importance of the body’s surface as a signifier of individual virtue. Featherstone (1991) suggests that within contem porary consum er society, the inner body (associated with health and functioning) and the outer body (associated with image, movement and control) have been joined so that maintenance of the inner body serves only to enhance the individual's outward appearance. He states further that: W ithin this logic, fitness and slimness become associated not only with energy, drive and vitality, but worthiness as a person (183). Discussion about HIV/AIDS has also considered this phenomenon (Gever, 1987, 116; Sontag, 1988). Body spaces are expected to approximate as closely as possible the idealized images of youth, beauty, and health, with failure to do so just cause for reproach. This reprimand may be particularly severe if such a lapse is seen to be self- inflicted, and/or the result of "pollution'' (i.e: the transgression of bodily boundaries by foreign matter). As was suggested above, people with HIV/AIDS have often been condem ned on both counts. 50 2.5 Community opposition: the role of NIMBY As well as expanding our geographical knowledge of the experience of marginalized groups, the socio-spatial dialectic has also prompted considerable research into the forces that shape the groups’ environments. This has often involved analysis of the confluence of these forces within a particular social and geographical context since, as Giddens (1985, 272) states: Context ...connects the most intimate and detailed components of interaction to much broader properties of the institutionalization of social life. An important part of this analysis, particularly for groups such as the mentally ill, the homeless, and other service dependent populations, has been the study of com m unity attitudes; in other words, the place-specific reactions that these groups have encountered from members of the general public. This topic forms the third focus of the review. During the last decade, the U.S. has seen a dramatic rise in the level of community opposition to the siting of "noxious" facilities. Noxious facilities are those which are often needed locally, but are deemed undesirable by the majority of the community. They include waste dumps, prisons, some commercial and industrial developments, but they also include, with increasing frequency, facilities designed for a variety of service dependent groups such as the homeless, the mentally ill. the elderly, people with drug problems, and people with HIV/AIDS. Takahashi (1992, 2) suggests that the rising tide of NIMBYism towards service dependent populations has been induced by two identifiable developments. On the one hand, there has been and continues to be a dramatic growth in the number of individuals seeking assistance from service agencies. This increase has been produced by several parallel trends including deinsitutionalization. 51 the changing welfare state, economic restructuring, rising homelessness, and the appearance and rapid proliferation of HIV/AIDS. On the other hand, recent years have also seen a marked increase in levels of local activism. Communities have become far more willing to organize and act against proposed facilities which they view as unnecessary or undesirable. Attempts to comprehend the etiology of community rejection/acceptance often portray the social landscape as a patchwork of interrelated contexts. Each of these contexts contains a population displaying a particular mix of socio-economic status, culture, ethnicity, age, sexual orientation, and gender (Takahashi, 1992). These variables com bine to produce on the one hand, a specific (although rarely uniform) world view, and on the other, a varying ability to translate that view into a substantive influence upon the structure and content of the community in question. Many studies within Geography have therefore documented the different reactions that marginalized groups such as the hom eless and the mentally ill have experienced (often when the opening of a facility to serve them is proposed), and the ways in which they have been accepted into, or excluded from community space (Sega) and Aviram, 1978; Dear and Taylor, 1982; Daniel Yankelovich Group, 1990; Dear, 1992; Takahashi, 1992; Beggs, 1993; W olch and Dear, 1993). These studies have ranged from ethnographic accounts of attempts to establish a single shelter, to quantitative analyses of national and regional variations in community attitudes. However, regardless of the scale of inquiry, two common themes emerge. First, com m unity opposition can, particularly where underestimated, represent a formidable barrier to the development of a human services facility. Second, despite the potential 52 problems posed by community opposition, significant variations do exist in the reactions evinced by different communities. Dear (1991, 19) in his guide to gaining community acceptance for a service facility suggests that in each instance the level of opposition will be determined by four primary factors: the characteristics of the client, the facility, the host community, and local programs such as outreach. Much evidence exists to suggest that the power differentials existing between sections of the population have meant that the "undesirable" clients and facilities have often been pressured into the less desirable, transitional neighborhoods of central cities where residents are often more heterogeneous, less affluent, and less likely to protest the arrival of "others" (Dear and Wolch, 1987). This fact has led researchers to use the term "ghettoization" to explain the cyclical process that produces the growing concentration of service-dependents and the services that serve them in the most marginal places (Massey, 1980; W olch, 1980). It also indicates another way in which space, as a resource, is used to manipulate the daily lives of the socially marginal. As was suggested above, the appearance and proliferation of HIV/AIDS is responsible for the creation of a new and rapidly expanding service-dependent cohort. Consequently, research has also begun to examine community reactions to people with HIV/AIDS, and those facilities designed to serve them. The nature of the illness, and the people associated with it have meant that it is highly stigmatized and therefore often strongly rejected. As W olch and Dear (1993, 188) suggest: AIDS has created a new benchmark for public perceptions; facilities for people with AIDS share most-unacceptable status with prisons and garbage landfill sites. However, despite the generally low levels of acceptability, significant variations do exist 53 between different community contexts. Takahashi’s (1992) study found that white, male, metropolitan, long-term residents were likely to be most vocal in their opposition to the development of community-based AIDS facilities. Elsewhere, Chliaoutakis et al. (1993, 82) present similar findings from a survey of residents of Athens, suggesting that differences in knowledge and attitude can be explained by the fact that: Central Athens constitutes a cultural environment of longstanding urbanization, whereas the more recent migrants of W est Attica retain the cultural characteristics of the village (also McCaig et al., 1991; Aruffo et al., 1991). Again, the significance of these and other studies lies in their efforts to link social processes with the ongoing production of social space. Community attitude assessments imply that particular locations within a city, region, or country are likely to exhibit very different reactions towards people with HIV/AIDS than others. In turn, the nature of the reaction is likely to determine, at least in part, the level of resources available within the community, and the ease with which people with HIV/AIDS are able to utilize local space. More generally, all studies concerned with marginalized populations indicate the ways in which space has been employed, either benevolently or malevolently, overtly or implicitly, to manipulate people’s day-to-day existence. 2.6 Diminished worlds? The final section serves as both a synthesis for the materials discussed earlier in the chapter, and a point of departure for the present study. Not surprisingly, significant volumes of literature already exist upon the physical, social and psychological impacts HIV/AIDS. Work has also been done to examine some of the strategies with which individuals have attempted to come to terms with the illness, and the crucial role that 54 social networks (both formal and informal) may play within these strategies. However, analysis of the literature also indicates that very little of the research has touched explicitly upon the spatial dimensions of either of these issues. At the same time, it seems apparent that whilst geographers continue to make useful contributions to our knowledge about the diffusion of the illness, there are many areas of inquiry which remain largely untouched by geographical hands. Despite this absence, three other related fields of study within geography do provide useful analogies for the task at hand. The first of these is social network and daily path analysis since it provides a method with which to gauge the disruption caused by a traumatic incident such as becoming homeless. A second concerns the growing literature on the experiences and locations of people marginalized by the larger social body. The third related field examines the way in which different com m unities react to service dependent populations and the facilities designed to serve them. My aim in this thesis then is to provide a basic understanding of the problems faced by individuals following diagnosis with HIV. Like Rowles’ (197K) study of the geographical experience of older people, or Rowe and W olch’s (1991) study of the daily paths of women on Skid Row, a spatial perspective is invaluable because we cannot fully comprehend the impact of the HIV/AIDS unless we know what effect it has upon the morphology of everyday life. W hether the symptoms are medical, psychological or social, it seems likely that their appearance will work to diminish people’s worlds at a number of different scales during the course of the illness. In the next chapter, a theoretical framework is developed conceptualize the nature and extent of this change. 55 CHAPTER 3 Living with HIV/AIDS: a framework for analysis 3.1 Introduction The central question posed by this thesis is what effect does an HIV diagnosis and the subsequent onset of AIDS have upon the geographical dimensions of an individual’s day-to-day life. The presence of a chronic and often fatal illness must, by definition, impact upon a person's ability to function. With HIV and AIDS, the greatly increased vulnerability to opportunistic infections means that people can become very ill very quickly. As a result, they may be unable to continue to perform some or all of the tasks required to sustain the existing dimensions of everyday life. In addition, the psychological challenges of the illness may also act to limit the spatial extent of the individual’s world. The manifold components that constitute an individual’s social context also play an important role in mediating the precise impact of the illness. For example, the reaction of family and friends to an HIV diagnosis, the availability and proximity of appropriate services, and the socio-demographic make-up of the surrounding community, concomitant with more macro-scale considerations such as the prevailing political climate, all represent potentially significant influences on the lived space of the individual. The aim of this chapter is to construct an analytical framework for analysis that will help to illuminate the geographical dimensions of living with HIV/AIDS. To do this, three questions m ust be posed: first, what are the potential changes that HIV/AIDS imposes upon the spatial extent of an individual’s daily/life world?; second, how do people attempt to confront and come to terms with these alterations?; and third, what 56 factors are significant in determining an individual’s ability to confront and come to terms with these alterations? In general, one might expect to see a gradual diminishing of the individual’s environm ent with a progression from asymptomatic HIV, through symptomatic HIV, to AIDS. However, as the discussion in chapter 2 illustrates, neither the person with the illness nor the social context can be considered constant. The relative psychological and physical strength of a given individual, coupled with the quality of social surroundings could considerably influence the pace and the character of this progression, thus changing the spatial impact of the illness. At the same time, the changing terrain of the individual’s day-to-day world will also "act back” to influence the well-being of the individual, and the nature of the social surroundings. A more comprehensive understanding of the dynamics of change is therefore vital. To provide the basis for this understanding, this chapter begins by defining the spatial and temporal parameters of inquiry. It then develops a framework incorporating five broad dimensions (Fig 3.1). For a given person with HIV/AIDS, it is hypothesized that the particular configuration of each of the five dimensions (the individual, informal social network, service providers, community setting, and broader social context) will determine the geographical impact of the illness. In turn, it is assumed that any spatial reconfiguration which occurs will subsequently act to alter the balance of these forces. 3.2 Parameters of Space and Time i. Space Care must be taken to fully explicate "space." For the purposes of this framework, three different conceptions of space are employed: social, interpersonal, and personal. Fig 3.1 Dimensions of life following diagnosis Immediate Environment SE R V IC E A G E N C IE S COMMUNITY SO C IA L N ET W O R K Physical P sy c h o lo g ic a l DIMINISHED/ EXPANDED WORLD? 4 — — — — — — — — — — — B R O A D E R C O N T E X T 58 Social space is used to measure the extent of the individual’s everyday environm ent— a world created by the repeated inscription of the individual’s daily path into the social landscape. Over time, as the nature of the individual daily path alters, the morphology of this social environment will change also. Traumatic experiences may affect rapid and pronounced change to the individual’s daily path (time/space discontinuity), causing a significant redrawing of the boundaries of their day-to-day social environment. The prefix ".social" is used to suggest that the shape of a given individual’s daily path is the product of a complex interplay of social forces of which the individual is an integral part. Social status is thus seen to determine, and be in part determined by, location. For the person with HIV and AIDS, any changes that occur as a result of the social and/or medical symptoms of the illness will be registered here. The onset of opportunistic infections or the loss of employment, for example, may force a downsizing of the everyday environment. Conversely, a weekly counselling session at a service agency may add an additional node to the daily path. Interpersonal space refers to the space through which interaction with others occurs. It is, of course, intimately connected with social space, since the shape of an individual’s everyday environment is strongly influenced by the people that he/she interacts with. However, it is important to differentiate between an individual’s daily path (measured in social space), and his/her social network (measured here in interpersonal space) since the two may diverge quite significantly. Not every place that a person frequents in the course of his/her daily path will contain someone with whom he/she is familiar, so that under certain circumstances the social space inhabited by an individual 59 may be considerably larger than the interpersonal space. This distinction may be important for people with HIV/AIDS. Rejection by friends and family following diagnosis, for example, may suggest that whilst the potential size of the individual’s environm ent remains relatively unchanged, there may be fewer people with whom to interact during the daily routine. Conversely, a marked decline in the size of a person’s daily path due to illness may have little impact on the strength of his/her social ties if the outward trips that would normally be made are now exchanged for inward visits from friends and family, or replaced with telephone calls. Similarly, a single visit to a service agency each week may do little to enhance the size of a person’s overall daily environment, but may substantially improve interpersonal connections. The third type of space. Personal space, is used to denote the space of the body. Although by definition a person’s body constitutes the center of both social and interpersonal environments, I am interested here more specifically in the changes that are wrought in the aesthetic form, and functional utility (drawing on Rowles’ notion of immediate movement, 1978, 160-161) of the body itself. All people experience progressive change in both the appearance and functional capabilities of their bodies during the life course. Many of these, such as growth, adolescence, weight gain, and aging, are often gradual, and are regarded as inevitable (although not always acceptable). Other changes are seen as far less inevitable (and/or unnatural), and may engender greater hostility as a result. Deformities, disabilities, obesity, and so on challenge socially accepted corporeal geographies by creating new shapes, and by changing the utility of the individual body. People who contact the HIV virus may also fall into this latter category 60 with a progressive weakening of their immune system and a progression to AIDS, since both aesthetic and functional changes can be expected as a result. The implications of these changes are several. First, physical (or mental) deterioration brought on by illness may restrict the individual’s immediate movement, in turn affecting the extent of social and interpersonal environments. Declining functional ability may also bring with it social stigma, further restricting movement. Second, illness may also cause the outward appearance of the body to change (through wasting, skin discoloration, and so on). This type of "mutation", particularly when it is clearly visible, may induce rejection from others, reducing interpersonal opportunities. At the same time, the individual may substantially reduce his/her own social environment, regardless of the reaction of others, due to the internalization of bodily norms and the use of self-surveillance (Featherstone, 1991, 184). ii. Time Time, like space, is an invaluable gauge of social activity. Similarly, it can also be regarded as an important resource. I suggested above that work done with the homeless population indicates that once on the streets, an inability to exit from homelessness can be understood, in part, as a product of being "space takers," unable to dictate the make-up of their daily surroundings. Yet this picture is incomplete without the addition of a temporal dimension. Homeless people are frequently also "time-takers." in the sense that opportunities for access to welfare, shelter, food, and so on are frequently available only at specific times, as well as specific locations during the day. Constraints of this nature may also be increasingly applicable for people with HIV/AIDS. 61 However, time can also be oversimplified. It is frequently assumed that time exists solely as a chronological progression of minutes and hours even though this is frequently not the case. The implications of such an assumption are important. The temptation to label people "old", for example, simply because of their chronological age is strong, yet the label brings with it a series of negative connotations about the person’s cognitive and physical abilities, as well as a socially-constructed role that "old" people are expected to fulfil (Featherstone and Hepworth, 1991, 374-5). Parallel concerns can also be found in the study of HIV/AIDS. I have already discussed Sm all’s (1993) admonition about the creation of a series of rigidly defined stages through which people with HIV/AIDS must pass. Care must be taken not to equate the passage of chronological time as an automatic indicator of worsening health. For each individual diagnosed with HIV, the potential for lowered immunity and the appearance of symptoms may increase with time, but this fact does not serve as a guarantee that it will occur. Since HIV and AIDS affect everyone differently, the time elapsed since diagnosis can be used descriptively to gauge the rate of change in an individual’s health (and daily path). They cannot, however, be used normatively to indicate what the status of a person’s health or the size of his/her environment should be at a given point in time. Instead, a relative time-scale must be tailored to each individual’s experience. This does not imply that comparisons between the experiences of different individuals cannot be made, but simply that a priori assumptions (based on simple calendar time) about those experiences are essentially untenable. As a result, this framework uses chronological time to gauge those changes that occur in the size and shape of the individual's lived space, but with 62 the understanding that time elapsed since diagnosis is not itself a totally comprehensive predictor of change. The longer a person lives with the illness, the greater potential there is tor change, but I suggest that the exact spatial and temporal dimensions of life with HIV/AIDS will be determined for each person primarily by the fusion of five factors: the individual, the social network, service providers, the surrounding community, and a range of contextual influences. 3.3 The Individual An understanding of the characteristics of the individual is central to any inquiry into life following HIV diagnosis. Three specific areas of interest can be identified: the individual’s physical health (determined primarily by the stage of the illness); psychological well-being (i.e. an indication of self-esteem and ability to deal with the illness); and socio- demographic profile, i. Physical Health/Stage of Illness Firstly, physical health must be considered as a factor effecting the individual’s everyday environment. Currently, despite every effort to slow the illness, progressive erosion of the body’s immune system, and a growing likelihood of opportunistic infection continue to threaten serious and often rapid deteriorations in the extent of peoples’ daily lives (section 2.2.i). Physical illness brings with it a heavy psychological toll, but it also imposes its own constraints upon the movements of the individual. Symptoms of HIV, coupled with the impact of opportunistic infection (as well as the sometimes serious side- effects of medication) will undoubtedly alter the size of an individual’s daily path. If a person progresses from asymptomatic HIV through symptomatic HIV to AIDS, the 63 general trend in mobility will be downward, despite the fact that this decline may be interspersed with a series of relative improvements brought on by recovery from infection and/or the introduction of more effective medication. Ceteris paribus, this would imply an overall diminishment of the person’s social space. At an interpersonal level it might suggest a growing isolation, although closer ties may be maintained despite worsening health. Thirdly, at a personal level, progression of the illness bring about often marked change in the appearance and functional capacity of the individual’s body. Stage of illness is therefore expected to be a significant indicator of the size of a person’s world at a given point in time. The physical symptoms of the virus and of any opportunistic infection (regardless of it/when and how they appear) will play a significant role in demarcating the spatial extent of the individual’s environment, ii. Psychological well-being Psychological well-being is as vital to an individual’s efforts to live with HIV/AIDS as physical health. There is good reason to believe that state of mind may be a significant influence on the progression of the illness. Indeed many professional care givers emphasize the need for a well-rounded regime of care focusing on both the physical and emotional demands of HIV/AIDS (AIDS Treatment Directory, IW 4). Studies continue to indicate that denial, guilt, anxiety, depression, and withdrawal are all reactions commonly engendered by diagnosis and the subsequent progression of the illness. However, unless a person is willing/able to face up to, and deal with the illness, efforts to help him/her to do so will be severely hampered. 64 O f particular relevance to this thesis is the interrelationship between emotional stam ina and the individual’s daily environment following diagnosis. Psychological well being both influences, and is influenced by the size and strength of a person’s social network and daily path. Attendance at weekly counselling sessions, enjoying the com pany of friends (some of whom may also be HIV-positive) and family, and generally maintaining a busy schedule may do much to preserve a positive attitude about oneself and one’s existence, in tum strengthening the continuity of everyday life. In contrast, a vicious circle may be initiated if withdrawal and isolation negate the potential support and services available from such sources. Low self-esteem, loss of hope, and depression may be responsible for withdrawal, but these sentiments can also be intensified by instances of ostracism and prejudice. W hatever the reasons for the psychological deterioration, when it occurs a person may find the prospect of leaving the relative safety of home increasingly unappealing. The result may be that the person’s isolation and despair are reinforced, causing them to forego offers of formal and informal assistance precisely at a time when they are most in need. Changes in physical health status will also affect an individual's attitude towards life, and towards him/herself. The added psychological costs of illness may impose more rigorous constraints upon the individual than would have been produced by physical complications alone. However, the same may be true in reverse. A relative improvement in physical health, even if only minor, may do much to reinvigorate a person’s optimism. 65 iii. Socio-demographic profile Variables such as age, gender, race, ethnicity, sexual orientation, and income help to mold our own and others’ impressions of who we are. They may also be significant determinants of the impact that HIV/AIDS has upon an individual’s life. Age may be an important influence on an individual’s ability to resist the onset of opportunistic infection. Relative position in the life course may also help to determine the depth of experience individuals have with human frailty and fatality, and hence their ability to deal psychologically with their own deteriorating health. Gender may hold sim ilar significance. Since the vast majority of those individuals diagnosed with HIV have been male, it may be more problematic for women to find service agencies oriented specifically to their needs. As a result, it may be harder to obtain resources, and establish contacts that help to maintain a degree of continuity in life following diagnosis. The individual’s gender may also determine the type of reaction received from others. Since a great many diagnosed men have been gay, sexual orientation is important in determining the impact that the illness has upon the individual. Given the huge toll that the illness has taken on homosexual men, and the corresponding response from the gay community, gay men may be more likely to access information and resources than straight counterparts following diagnosis, and may therefore be better equipped to handle the demands of the illness. They may also be more likely to have had first-hand experience of the illness due to the earlier diagnosis of friends or lovers. However, the impact of such an experience may be difficult to predict. Prior experience may tem per the person psychologically for the challenges that lay ahead, but it may also feelings of 66 despair about one’s own future. Finally, stigma continues to surround gay men. Negative attitudes about homosexuality may have already altered the structure of a gay m an’s social network and daily path to include, for example, strained or non-existent relations with parents or other family members, and a bifurcated set of social ties. W here these and other characteristics exist, they will also condition the changes that occur following diagnosis. Race and ethnicity may also be important influences on the individual's post diagnosis experience. Attitudes toward illness, death, homosexuality, and so on. have been shown to vary significantly between different populations. As a result, an individual’s racial and cultural identities may determine in part the type of reaction he/she encounters from others, as well as his/her own internalized reaction to diagnosis. These reactions will impact the morphology of everyday life in turn. A final socio-demographic indicator to consider is that of income/social class. Income is an important determinant of the level of material resources that an individual can access following diagnosis. Ownership of a reliable car, for exam ple, may make it far easier for a person to maintain a spatially extensive daily path in the face of deteriorating health. Level of income prior to diagnosis may also determine the quality of health insurance that individuals have, and the speed and effectiveness of treatment they receive. Thirdly, social class affects the financial security that an individual possesses, markedly influencing the size and shape of the daily path. Reliance on welfare usually imposes significant limitations on everyday movement. An ability to maintain som e degree of financial independence following diagnosis may be instrumental in 67 determining the level of control that an individual achieves over the size and shape of his/her daily world. 3.4 Social Network The people that one knows provide a variety of emotional, material and logistical supports that enable each of us to function on a daily basis. Concomitantly, each person's network produces a geography of interpersonal relations that is, in part, responsible for defining their everyday environment. As was illustrated in chapter 2. the make-up of a social network may be impacted by traumatic experiences such as the appearance of HIV. The structure of a given social network will help to determine its response to the illness. Family members, friends, service providers, and employers each offer a range of resources that may or may not help to deal with a particular situation. Relying solely on family members for support, for example, may induce what some have termed "emotional burnout" as individual relatives are increasingly unable to cope with the deteriorating health of the individual. This reaction may also occur among lovers and close friends. When it does, the net effect may be a reduction in the individual's resource base, and a concomitant recasting of his/her social and interpersonal environment. Conversely, a high degree of dependence on a formal service providers for assistance may assure the individual of a relatively stable network of contacts. It may not, however, fill the gap created by a missing confidant. Because of this, "marital status" (i.e: the presence of a significant other) may be a particularly important influence upon the shape of life following diagnosis. Long-term companions often serve as a proximate sources for psychological and material support. They may also coordinate 68 transportation and other logistical issues. Finally, they may offer an intimacy that cannot be entirely compensated for by other family and friends or service providers. The size of an individual’s social network cannot be equated automatically with the full extent of his/her everyday environment. However, it is clear that social relations, both formal and informal, generate an important network of inter-personal spaces. The ability to maintain access to a variety of these environments following diagnosis may be important for several reasons. First, the ability to move between different localities provides the individual with a sense of variety. M aintaining a job after diagnosis, for example, may permit a person to enter an environment in which the illness becomes less relevant than the position of responsibility he/she is accorded. The financial remuneration from employment also ensures the availability of a range of both material and emotional resources that would otherwise be absent. A favorite hobby, particularly one that involves contact with others, or voluntary work might also serve analogous functions to that of employment, providing environments in which individuals are able to meet and help others, engage in other activities, and so on. Although it may be tempting to place an emphasis on continuity and the maintenance of a busy schedule, in some instances the costs of maintaining access to people and places may outweigh the benefits. If, for example, a person feels unable to reveal a diagnosis for fear of stigma and discrimination, time spent in the workplace or other overtly public spaces may be highly stressful. Sustaining a double identity through "covering" the illness requires a great deal of emotional and physical energy that some individuals may not be able to expend. Even when an individual’s status is known to 69 others, physical decline associated with the illness may necessitate a reduction in the size of his/her network. To fight against such a reduction may induce a more rapid deterioration of health; hence a definite tension can exist between a need to maintain access to a variety of people and places, and the importance of reducing the level of daily activity. Social networks are potentially vital sources of assistance for individuals following diagnosis, but they vary significantly in their ability to help. W here network members are generally supportive, both the quality and extent of an individual’s interpersonal environm ent may be sustained or enhanced. W here, for a variety of reasons, an existing network is not maintained or replaced, an individual may become increasingly isolated, both socially and spatially. In such instances, the challenges posed by the illness must be dealt with alone. In turn, this may leave little opportunity for other activities, and necessitate the development of a daily world dominated almost entirely by the illness. 3.5 Service Providers. Following diagnosis, many people find that service agencies begin to play a much stronger role in defining their everyday lives. Three different types of provider can be identified: medical care; welfare benefits; and one or more other support services, i. Medical services HIV brings with it a growing dependence on a variety of medical care providers and facilities, with contact ranging from brief consultation with a local doctor during the early stages of the illness, through a short hospital stay for recovery from an opportunistic infection, to more permanent hospitalization. A vital question in each case concerns the 70 impact that the increasing reliance has upon an individual's daily environment. The answer to this question depends largely upon the individual’s ability to access care, and the quality of care subsequently received. Access to medical care of any kind is often contingent upon the possession of health insurance. For people working prior to diagnosis, access to private health care, either through an employer or privately, may be an option. However, recent media reports suggest that some employers and insurance companies are becoming increasingly reluctant to pay out the large sums of money required for comprehensive HIV/AIDS treatm ent.1 Those without private care must rely on the public healthcare system. In theory, the Medicaid (or Medi-cal in California) system offers a range of health services and prescription drugs, and is open to all SSI recipients and a variety of other low income groups.2 However in practice, budgetary constraints and a rapidly expanding patient base mean that access is problematic, and that the quality and timing of care may be open to question. For people with HIV/AIDS the public health care system, like its private counterpart, may also be reluctant to loosen its purse strings. In some instances, drugs that could potentially improve a person’s health are not covered by the Medicaid system as long as they retain an experimental status (if they are not fully approved by the Food 1 For example, some health insurers may attempt to segment their markets, placing higher premiums on those individuals with serious and/or expensive ailments. At the same time, some self-insured companies have attempted to limit the benefits availahle to employees with HIV/AIDS, offering small one-time payments instead of the full coverage required (Hunter and Rubenstein, 1992). 1 Kizer (1992) estimates that around a quarter of the people with HIV/AIDS in California currently receive public medical care (Medi-cal). Hunter and Rubenstein (1992) estimate a figure around 40% at the national level. 71 and Drug Administration). Even for those drugs covered, reimbursements for prescription charges may be significantly lower than the actual cost of the medicines (Hunter and Rubenstein, 1992). The existence of medical facilities and an individual's eligibility must, in turn, be complemented by a third condition, the spatial proximity of client and service. Unless the client has the ability to reach the service (or in some cases, vice versa), the latter remains unused. Such a spatial mismatch may occur for one of a variety of different reasons. For example, information about the location and purpose of a facility is not widely available, an individual is no longer able to drive or cannot access public transportation, or medical facilities are not located within a client’s community as a result of strong NIMBY sentiments. Finally, reports continue to indicate high levels of anxiety among medical staff treating people with HIV/AIDS. As a result, ostracism and discrimination have been pervasive. Although accurate measurement of the impact of such negative reactions is problematic, they may represent a powerful influence on peoples’ access to health care. Health care/medical services may impact the extent of the individual’s world after diagnosis in several ways. To obtain medical care people are normally required to be in certain places at certain times. Therefore medical services may impose quite rigorous coupling constraints on individual movement through interpersonal and social space. In addition, during periods of hospitalization the limitations placed on immediate movement (i.e. on bodily action) by the illness may be complemented by severe restrictions imposed on the extent of the individual’s environment by hospital regulations (limited visiting 72 hours, confined space of hospital ward, assigned times for meals, medication, and so on). Second, if medical care can slow the progression of the virus or reduce the impact of opportunistic infections, the physical and psychological benefits of this are likely to have a beneficial effect upon the extent of an individual’s daily world, improving immediate movement and allowing for a more active routine. However, any gain produced by effective medical cure may be eroded, sometimes significantly, by the negative impact of the medication itself. Although this subject is discussed in greater detail during the analysis that follows, it is important to emphasize here that many of the m edications designed to treat HIV and any associated complications produce side-effects (such as nausea, fatigue, organ damage, wasting, hyperactivity, and so on) that may damage physical and psychological well-being, and so adversely im pact the spatial dim ensions of the individual’s world, ii. Welfare services The onset of HIV/AIDS often implies a progressive erosion of financial security. Poor health, and/or social stigma may make employment increasingly untenable. Job loss, or the switch to lower paid part-time/temporary work, coupled with the additional forfeits this entails (e.g: loss of health insurance and other benefits), may have a major impact upon a person’s ability to pay a mortgage or monthly rental, to maintain a car, or even to provide a basic supply of groceries and household items. As a result, access to some other source of financial aid (both monetary and in-kind) may become a pressing issue. For people with HIV/AIDS, the most accessible form of financial aid available from governm ent coffers is Supplemental Security Income (SSI). This provides a 73 monthly payment to disabled, blind or elderly individuals and couples of between $630 and $1,372, on the condition that they earn less than $386 ($579 as a couple) per month. The program is federally funded, but is administered and (in California) supplemented by the state. In addition, people with HIV/AIDS may also be eligible for IHSS (or In Home Supportive Services). This is a state-funded program serving SSI recipients who are no longer able to cope with living in their own home. It offers a variety of supportive services (cleaning, transportation, food) as an alternative to moving the individual to a residential facility. Government programs also dispense other forms of assistance. Accommodation, for example, may be provided for people with HIV/AIDS in a variety of forms. Section 8 housing certificates issued by local government provide accommodation at a fraction of market price. In addition, the National Affordable Housing Act of 1990 contained provision for supported housing developments, some of which were targeted specifically at people with HIV/AIDS. Of course, the existence of these programs is not sufficient, in itself, to guarantee well-being. Given the current condition of the welfare state, there is every reason to believe that the levels of financial support do not adequately reflect the current cost of living. Nor can we assume that there is successful utilization of available resources. Finally, the sheer complexity of the welfare bureaucracy may mean that some people who are potentially eligible for assistance have simply not made it through the maze of paperwork and appointments required. Recourse to welfare services functions as an important influence at all three levels of spatial inquiry (social, interpersonal, and personal). Financial aid, in w hatever form, 74 may help to sustain an existing pattern of spatial relations by securing a homebase; by providing income for transportation as well as a variety of social and leisure activities; and, at the most basic level, by providing sufficient food stuffs and other necessities of life. Yet financial assistance is not without costs. As in the case of medical services, the procedures that an individual must follow to gain access to welfare may, themselves, act us coupling constraints upon daily movement. In addition, reliance on welfare may negate any additional income that could be obtained from part-time employment. Although people with HIV/AIDS qualify for SSI under the disability heading, many of them, particularly during the early stages of the illness may be able to undertake em ploym ent without burden, iii. Voluntary and non-profit agencies Other supportive services have developed within the last decade or more to serve people with HIV and AIDS, many of them within the non-profit sector. A taxonomy of these services might include: group and individual counselling, sheltered accommodation, employment and housing referral services, food/meal provision and delivery, companion programs, case workers, information/advice hotlines, peer support groups, advocacy, family-oriented support, anonymous HIV testing, legal services, and transportation services. Here again, eligibility and location are important. Many organizations have carved out particular niches within the service framework. Consequently, they tend to have specific requirements for eligibility which may narrow their potential client base. When this fact is coupled with the issue of access, and problems of imperfect information 75 concerning available services within a particular locale, difficulties may arise in the effective matching of client and provider. Discrimination and ostracism are less likely to hinder access to these services, since many are run specifically for (and sometimes by) people with HIV/AIDS. However, there can be no guarantee that potential clients will be either willing or able to adhere to the regulations set down by a provider, or that a provider will be able to satisfy every client’s expectations. In spatial terms, several implications are again apparent. First, agencies make demands upon the time and space of an individual's daily environment. Although bureaucratic barriers to access may be less common for these agencies than for medical or welfare services, access to assistance of any form is nevertheless contingent on being in particular location at certain times during the day. Second, the range of material and emotional support provided by agencies is also likely to impact the spatial dimensions of people’s worlds. For example, the provision of free food stuffs, vitamins, and so on may help individuals to protect their physical health and hence retain acceptable levels of immediate movement. In addition, counselling both for the individual with HIV/AIDS and his/her caregivers, may do much to preserve interpersonal ties strained by the presence of the illness. Concomitantly, access to sheltered/subsidized accommodation and financial aid may help to push back the boundaries of the individual's daily path. Thirdly, service agencies themselves often serve as important locales within an individual's social environment. If people are unable to work following diagnosis, the chance to spend time at one of a range of agencies (possibly volunteering) may return a degree of structure and purpose to daily life. The trip to the agency, the relationships 76 established with others (many of whom may also have HIV/AIDS), and the information garnered about available resources may all provide benefits over and above those received from the agency’s formal programs. 3.6 The Community The com m unity’s impact may be separated into two interrelated categories: the level of resources within a given locale which will determine its ability to successfully meet an individual’s basic needs; and community attitudes which are likely to have a significant influence upon the person’s experience of day-to-day life, i. Community resources A strong influence on quality of life will be the sum total of resources available within the surrounding community. W ithout access to appropriate housing, employment, transportation, and leisure facilities, life on a daily basis becomes increasingly problematic. For people with HIV/AIDS, this task is made more complex since the medical and social impacts of the illness may make it increasingly difficult to access and make use of the more generic resources. Deteriorating health may mean that employment is no longer tenable, caring for one’s own home becomes too much, and driving is no longer possible. Social symptoms may produce simitar results; an em ployer may fire an individual upon discovering her HIV status, or a landlord may find similar justification for eviction. Moreover, the individual with HIV/AIDS will need access to a range of more specialized services designed to deal with aspects of their illness. However, some of these additional services may be viewed by others within the community as both unnecessary and undesirable. 77 In spatial terms, the level of resources within a host community will condition the individual’s activity on a daily basis. If resources such as retail outlets and leisure facilities, as well as more specialized facilities such as medical clinics and support groups are conveniently located, the individual may be able to maintain a com pact and efficient daily path that encom passes a variety of both essential and non-essential activities. However, where this is not the case, individuals may be required to travel further afield to perform essential tasks such as blood tests and welfare applications. This additional distance may tax the individual physically and psychologically; the additional time taken may also act to constrain other activities. Where an individual is unable to journey further afield, either through poor physical health, or lack of transportation, he/she may forfeit valuable resources, a fact that may further constrain activity, ii. Community attitudes Com m unity attitudes and the actions or inactions that stem from them are also powerful determinants of the quality of life for a person with HIV/AIDS. In recent decades, many writers have noted the rise of the NIMBY (Not-In-M y-Back-Yard) syndrome; a willingness among residents to offer strong and sometimes well-organized opposition to the proposed development of noxious facilities within their communities. Included in this "noxious" category are waste disposal dumps, nuclear facilities, chemical plants, as well as a variety of human service facilities such as hom eless shelters, com m unity mental health centers, and drug/alcohol rehabilitation clinics. More recently, facilities serving people with HIV/AIDS have been added to this list. O f course, not all communities react in the same manner. Particular com binations 78 of socio-demographic characteristics arc likely to produce markedly different reactions to proposed developments. One consequence of these variations has been the frequency with which both client and provider have gravitated towards poorer, often less desirable neighborhoods to avoid opposition. As a result, the successful meeting of the client and provider must be offset by the fact that it occurs within an environment that may have little to offer in the way of useful community resources. Community attitudes are not only mediated through organized opposition. At a more informal level, prejudice and ostracism from individuals and groups within any community may weaken a person’s well-being and resolve. The smallest remark or jibe may have a significant psychological impact, causing the person to think twice about venturing out the next day for fear of further humiliation. In this way, community attitudes may affect an individual’s daily world. Where a negative reaction is experienced in some shape or form, the psychological impact (or in extreme cases, physical threat) may cause the individual to alter the shape of his/her daily path to avoid those people and/or those contexts connected to the incident. However, the individual's world can also be constrained without direct experience of rejection. For some people, the knowledge that HIV/AIDS remains a highly stigmatized condition may be sufficient to produce a fear of rejection which causes them to limit movement to certain locations or times of the day. The extent to which anxiety about community reaction limits individual movement may also be strongly linked to the visibility of the illness. W hen symptoms are clearly visible, the desire to avoid public places may be at its greatest. 79 3.7 Social Context Although the individual, and the people and places that constitute the immediate environm ent are vital considerations, it is also imperative to recognize that these interactions do not take place within a vacuum. Instead, they occur within a broader social context comprising manifold different components, each of which possesses the capacity to influence the parameters of the individual’s daily life. Frequently, this influence is applied indirectly through a chain of increasingly localized mediating institutions (e.g. the State apparatus). For the purposes of this framework, five contextual factors are believed to be of particular importance in the daily lives of people with HIV/AIDS: prevailing state philosophy; current economic climate; cultural traditions; legal framework; and planning tradition. The state, without doubt, is the strongest institutional influence on many of our lives today. As such, it seems likely that its chosen modus operandi will have a significant impact on the way people understand, react to. and cope with HIV/AIDS. At a generic level, state philosophy will help to determine levels of investment in welfare, housing, and medical services, which, in turn, will affect the demand for other private/non-profit suppliers. More specifically, state philosophy will influence the relative importance placed on, for example, AIDS research, education, and prevention. One need only look at the legacy of federal government policies from the last decade to understand its importance on both of the above counts (ShiIts, 1987). Closely related to state philosophy is the relative economic well-being of a given nation, region, or locale. Two examples illustrate its importance: first, current economic 80 prospects have a role in determining the levels of investment that government will allocate to a range of vital services; second, the economic climate, combined with political rhetoric, may also have considerable influence on public attitudes towards groups that they perceive as service dependent. During hard times, a temptation to find scapegoats for our economic ills may identify those relying on welfare and other services as a needless burden on society. Cultural traditions undoubtedly underlie the individual's experience with HIV/AIDS. National identity, as well as regional and local variations, combined with racial/ethnic and religious divisions collectively produce a diverse fabric of beliefs and attitudes. These, in turn, heavily influence our reactions to sexually transmitted diseases, homosexuality, illness and the sick role, and so on. For the individual with HIV/AIDS and those around him/her, this cultural baggage will help to determine the way they see themselves and each other. The legal framework is also likely to be a significant part of the surrounding social context. The provisions that the law makes to prevent discrimination towards people with HIV/AIDS, and the strength with which it is prepared to uphold these provisions are two vital influences on the person with HIV/AIDS’ ability to access necessary services. W ithout some form of affirmative legal statute in their favor, individuals with HIV/AIDS may find it increasingly problematic to confront hardships triggered by prejudice and discrimination, a fact that may have significant repercussions in daily life. Finally, the prevailing tradition of urban planning will have an important impact on the spatial configuration of the surrounding community, determining levels of KI accommodation and other resources that individuals can expect to find nearby. Ultimately, the extent to which both planners and public are willing to implement some degree of fair-share planning (Wolch, 1987) will have profound implications for the distribution of facilities designed for people with HIV/AIDS. The ability to create a regional planning framework for affordable housing, or for more specialized resources like HIV/AIDS clinics, that recognizes each community’s obligation to the general good could do much to improve individuals accessibility to these resources. To conclude, myriad factors combine to determine the impact that HIV/AIDS has on the individual's day-to-day world. Within the context of this framework, these factors are divided into five broad dimensions: individual, social network, community, service providers and broader social context. They exist in an ongoing interrelationship (Fig 3.1). The first four interact over fairly short spans of time and space. Concomitantly, they are influenced by the broader social context mediated through institutions such as the state, the legal system, and the media. For each individual, the interplay of these dimensions produces a series of social, and thus spatial, impacts upon the nature of everyday life. These impacts may be felt at the level of social, interpersonal, and personal space. 3.8 Research methodology The final section of this chapter introduces the work which was undertaken to investigate the validity of this framework. The research in this thesis is ethnographic in emphasis and is the product of eight months spent volunteering with AIDS Project Los Angeles in Hollywood (APLA), and a series of nine detailed interviews with clients who are currently living with either symptomatic HIV or AIDS. 82 i. Volunteer work My volunteer work at APLA began in September, 1993. I worked (and continue to work) in the Necessities of Life foodbank where around a third of the agency’s four thousand clients receive a weekly supply of groceries and household items. Since clients m ust be considered low-income to qualify for this program, the population from which interviewees were recruited did not represent the full spectrum of people seen by the agency. Volunteering has proved invaluable to my general understanding of the issues which faced the clients on a day-to-day basis. During the initial orientation, volunteers are encouraged to engage clients in conversation, and the social atmosphere of the program means that there is ample opportunity to listen to people’s concerns about the illness, as well as their stories about the lighter sides of life. W orking in the foodbank also allowed me to become more familiar with the way APLA operated In addition, I was able to gam er useful information from the staff of several departments about such issues as welfare programs, medical care, and Section 8 housing. After three months, 1 approached the Program manager of the foodbank to request formal permission to recruit clients for this study. I had already made several of the staff aware of my interest in carrying out a research project about the difficulties of living with HIV and AIDS and all seemed to find the idea acceptable. The program manager was also happy for me to talk to clients about their experiences, but explained that I would have to approach the clients directly since the agency was unable to provide me with a list of client names for reasons of confidentiality. 1 had intended to use the former approach, so this did not present a problem. The program manager was also kind enough S3 to offer me the use of a room at APLA where the interviews could be conducted. W hilst this was a generous offer, I was unable to take advantage of it because it restricted the times at which interviews could take place. I had also realized that each interview would require several hours to complete, and therefore decided it would be preferable to allow respondents to select the time and place of their own interview. Following the program m anager’s approval, I approached several clients to ask if they were willing to participate in an interview about the extent to which their lives had changed since HIV diagnosis. I intended to make an initial contact on site, and then to arrange and confirm a meeting (normally at the person’s home) over the telephone, ii. The questionnaire The interviews were to be semi-structured in nature, but they were based upon a structured questionnaire that was used as a guideline for each interview (Appendix I). The five broad dimensions outlined in the framework above were all covered by sections of the questionnaire. Questions were grouped into nine sections; the first two sections were purposely used for fairly general questions about the individual and their health status to allow both interviewer and interviewee to relax before discussing more substantive issues. The nine sections were divided as follows: 1. Basic information about the person’s health status (time since diagnosis, stage of illness, personal opinion about health). 2. Personal characteristics of the individual (such as age, employment, housing) and asked what impact HIV and AIDS had had upon these characteristics. 84 3. The person's self-image (i.e. how they felt about themselves), and their world- image (how they felt about life in general), and how these had changed since diagnosis. 4. How the individual’s immediate community had reacted to HIV and AIDS, and what type of reaction (if any) the individual had experienced as a result. 5. The person’s access to. and experience with service providers (medical, welfare, and other non-profit agencies). 6. The size and strength of the individual’s social network, and the impact that HIV/AIDS has had. 7. The extent of the person’s daily path, and any changes that the illness had caused. 8. A series of broader questions requiring participants to assess how life has changed overall since diagnosis; whether those changes have been for better or worse; and whether participants feel their world has diminished as a result. 9. Opinions about how people thought daily life might be made easier. Effort was made to solicit suggestions about the improvement of service provision, or the creation of new services to assuage problems found in other spheres of life. (e.g. psychological problems). Questions about the roles the state, the media, public attitudes, and so on had played in alleviating or aggravating the problems of HIV/AIDS were also asked. Once an initial draft of the questionnaire was completed, mock interviews were conducted with other graduate students from the Geography department. These dry-runs provided 85 useful input on the wording of the questions, and several questions were added or deleted to improve the overall effectiveness of the interview. They also allowed me to familiarize m yself with the order of the questions, as well as the more practical task of recording the interviews, iii. Interviews After receiving permission to recruit clients of the foodbank, and completing a third draft of the questionnaire, interviews began. O f the eight people I approached initially, all agreed to participate, although I was unable to contact one man to arrange a suitable time and place. In addition, I was encouraged to contact another man who was nearing the end-stage of the illness. However, at that time he was too ill to be interviewed, and he has since died. Therefore, a total of seven interviews were carried out during February. 1994. Although the majority of the questions developed prior to the interviews did prove relevant, I encouraged respondents to talk about what was important to them. This meant that the structure of each interview varied greatly. W illingness to talk also varied. For some, a question implied five minutes of discussion; for others, the same question was answered by a simple yes/no. As a result, interview times varied between one-and-a-half and three hours. Following the completion of these interviews, the tapes were transcribed producing approximately one hundred and fifty pages of transcripts. Time was then taken to conduct an analysis of these transcripts, and the initial findings formed the basis for a paper given at the Association of American Geographers Conference in April, 1994 (W ilton, 1994). This analysis also prompted a revision of the questionnaire. Specifically, 86 three alterations were made: a section was added about changing sexual activity since this issue had been absent from earlier interviews; greater emphasis was placed on the impact of medication because it emerged as a central influence on people’s lives; and finally, an attempt was made to obtain a description of a person’s typical daily movements. Additional interviews were carried out in early May, 1994 with two clients from the foodbank. producing an additional forty pages of transcript. More detailed analysis of all nine interviews was then undertaken to produce the discussion contained within this thesis. iv. Interviewees Participants were selected with little prior knowledge about their health status (i.e. w hether they had symptomatic HIV or AIDS). However, an attempt was made to visually determine their health status (based on the presence of symptoms such as skin discoloration, persistent coughing, noticeable weight loss, poor mobility, and so on). Ultimately, I interviewed five people with symptomatic HIV and four with AIDS. Age, and race/ethnicity were considered during the selection procedure, since it was anticipated that both characteristics would be significant in determining the precise nature of a person’s experience following diagnosis. As a result, two of the participants were latino, three were african american, and four were anglo. Four were in their thirties, four in their forties, and one in his fifties. The interviewees were all male, and all except one were gay, although this was not a deliberate choice (the location of respondents’ residences is indicated in Fig 3.2). The majority of interviews progressed very smoothly despite the occasional interruption. Only in M ongo’s case was it difficult to understand what was Fig 3.2 Location of Respondents' Residences. \ Craig H ollyw ocJ' cn Horry Scott APLA Los Ange Santa Moriica K K being said, and that was primarily the result of recent drug-use. All of the men were, for the most part, relaxed during interviews. Only Craig and Scott were reluctant to discuss certain topics. Craig seemed to believe that I worked for APLA, and was therefore unwilling to criticize any of the services that the agency provided. Scott was unwilling to elaborate on the negative reactions he hud encountered from some friends following diagnosis. A short description of each of the men is presented below (see Table 3.1). In all but one case, they elected to have their own names used, v. The interviewer Ethnographic research has always attracted me because it deals with social phenomena at the level of the individual person. Ethnography immerses the researcher in the very issue that she is studying, and of course, this fact has been identified as both its main strength and its primary weakness. On the one hand, there is a sense that understanding is enhanced immeasurably by the direct contact and first-hand experience afforded by ethnography. On the other, there is a constant uncertainty about the role the researcher plays once that contact is established. From this viewpoint, ethnography positions the researcher too close to their subject matter. The result is that not only is the researcher unable to maintain a critical distance necessary for objective interpretation, but, more fundamentally, her presence can potentially alter the nature of the phenomenon being observed. In this way, the researcher’s interpretation of events is tacitly inscribed with her own subjective opinion as a result of her proximity. At the same time, her proximity may also initiate a chain of events that would not otherwise have occurred. 89 Table 3.1 Participant Profiles Juan is forty four years old, gay, and of Mexican descent. He was diagnosed in August of 1992, but says that, to date, he has bad very few problems with illness, aside from an initial outbreak of herpes, and occasional bouts of fatigue. He lives with a long-term friend in a plush West Hollywood apartment, which they own. Both of them have had very good jobs, and although currently unemployed, Juan says that be has several long-standing offers of employment with contacts in the travel industry. He is very well- spoken, and has travelled widely during his time as a tour operator based in New York. He admits that many of his friends from those days are now dead, but claims that he has a very strong group of friends in the Hollywood area. Juan admits that the HIV diagnosis has changed things, placing his life "on hold", and he wishes that he could be independent again. He also claims that he does not intend to suffer from the illness, and that if he could get two medical opinions which said there was no coming back, then he would end it himself. Mongo is fifty three years old, straight, and of Nigerian descent. He was diagnosed about three years ago, but claims to have known that something was wrong at least six years prior to that. He is a little unclear about the stage of the illness that he is now in, but he says that he has had hepatitis. In addition to HIV, he also has problems with alcoholism, and appears to be using drugs fairly frequently (marijuana, and something that he described as "some kind of crystals"). He is an artist and a poet, and claims to be well known within the LA arts community, although he frequently laments the fact that this recognition has not been accompanied by financial success. Mongo currently lives on the eastern edge of the Hollywood community in a section 8 apartment complex. He believes that several other tenants are also positive, because he has seen them at APLA. Prior to this, Mongo says he spent eight months homeless voluntarily in order to write a realistic play about it. During this eight month period, he says he was also involved in some art projects, including one in Little Tokyo that made the L.A. Times. JefT is Anglo, gay, and thirty one years of age. He was discharged from the Airforce for being gay. Diagnosed in 1990, he has since had hepatitis, and an outbreak of herpes. He is unclear about the exact stage of the illness that he is in, and has not had a blood test since july of 1993, primarily because he fell out with the nurse at his clinic. He says that he often feels lethargic and disoriented, and finds it very hard to concentrate. He also says that his memory has deteriorated, and his eyesight has worsened, both of which scare him a great deal. He had a job at a paper company, and continued to work after diagnosis, until the hepatitis forced him to lake two months off. He says his boss was very understanding and helpful, but that the firm couldn't keep him on. Jeff lives in the Miracle Mile area, but has only been there for four months. In many ways, Jeff seems to be the worst off of all the interviewees. He has not yet found a way to deal with the fact that he has HIV. Circumstances mean that he has very few friends, and no confidant to lean on when times are bad. His family have been of little help to him. The physical and mental deterioration of bis body worry him a great deal. Craig is Anglo, gay and thirty seven years old. He was diagnosed in late 1985, and considers himself to be someone with "full-blown" AIDS because his T-cell count is below 200 and he is currently suffering from Kaposi’s Sarcoma (KS). He has just moved to a Section 8 apartment in Hollywood and lives there with a room-mate. Craig came to L.A. from San Diego in 1989 to attend art college. He has not worked since he left there in 1992, but says that he does occasionally manage to sell pieces of his art work. Craig is a very shy person, and was clearly reluctant to open up fully during the interview. He admits that 90 Tabic 3.1 (continued) Participant Profiles he is a fairly quiet type, and says that he has never gone out that much, preferring to have a small group of friends visit him instead. The KS has undoubtedly increased this tendency to stay at heme. He says that he has noticed people looking at him strangely, and that it has prevented him from going out. Overall Craig thinks little has changed in his life. He says that he does not feel constrained presently, except by the visibility of the KS. He has a car so he can get around during the day, and he is determined to keep working on his art, so that be will have established himself if a cure is ever found. Harry is African-American, gay, and thirty nine years old. Diagnosed in early 1990, he says he had a good idea that something was wrong before that. He admits that he had been having unprotected sex frequently, and that he has also been an IV drug user for at least twenty five years. He lives in a one-room apartment near Hollywood and Vermont. He would tike to he in a bigger place, hut that this is ok for now. He has been there since last July, and before that lived with a companion in Westwood for about eighteen months after leaving the VA hospital in Brentwood. Prior to this, Harry spent a year in New York with his family where he was diagnosed. He has since had two bouts of pneumonia (PCP), the latter one he is just beginning to get over. He says that he has a good employment background in the office products business, and before that in the airforce. Currently he is enrolled in a computer graphics course at a private college. He says that he is financing himself, but does not reveal bow he managed to raise the required fees. Since the pneumonia returned he has had to drop school, but is determined to return in the near future. Harry suggests that his life has changed fundamentally. He has found out a great deal more about himself, and feels that he is a much better person mentally, even if he has deteriorated physically. Jim is white, gay, and thirty six years old. He was diagnosed at the end of 1984, and is currently on the boundary between symptomatic HIV and AIDS. He lives with a long-term companion in a two bedroom duplex near Melrose and Fairfax. They have lived there for fifteen years, and Jim has no intention of moving. He has not worked for some time, and says that he no longer has any desire to return to paid employment. He would, howeveT, like to be involved as much as possible in voluntary work, as he was before he became ill. He is very hyperactive, and comments on this during die interview saying that it is something that he has had to deal with since childhood. Jim concedes U bat life has changed significantly. He has had to learn to become more dependent on others, something that he finds hard to do. The diagnosis has been good in the sense that it has provided him with the time to do things, but he wishes he could get out much more than he is currently able to. In many ways, despite his current weakness, Jim seems to be one of the most active of the interviewees. He is very determined to get on with life, and has a good understanding of what is needed to cope with the illness, both in terms of his internal mind-set, and the resources that are available around him. Armando is Cuban, gay, and thirty eight years old. He says that he was diagnosed in 1987, but that his illness is currently only classified as HIV, despite the fact that his T-cell count is only 26. He is generally optimistic about his health. He lives in a tiny one-room apartment in Silverlake, where he has been since he broke up with his lover four years ago. He worked regularly several years ago, but suffered a serious back injury that put him out of action for three years. During that time be completed a course in printing, and worked for a short time before being laid off due to complications with his back. He hasn't worked since, despite attempts to find a job, and is not optimistic about future employment. The majority of his time recently has been spent visiting and caring for friends with AIDS. He says he has lost twenty 91 Table 3.1 (continued) Participant Profiles two friends to the illness since the mid-eighties. More formally, he is also partly responsible for organizing and running a support group for gay Hispanic man. Since diagnosis, Armando feels he has become much more conscious of his health, the things (hat are important to him, and the realities of the health care system. He states that being diagnosed is like having a mark on your face so that everyone knows. He has lived alone for four years, and would very much like a companion. He is sure that HIV has been responsible for him not finding a partner, and admits that he finds the question of whether or not to reveal his illness to people a real dilemma. Ron is African American, gay and forty six years old. He was diagnosed in 1991 during a stay in hospital, and he is currently classified as having symptomatic HIV. He lives in roomy apartment in Hollywood which was obtained through the Section 8 program. He has been here for about a year. Prior to that he spent about a year living in an AIDS hospice, preceded by some time spent living with his mother. Before that, he lived with his lover in the Valley. Ron is a devout Buddhist, and because of this faith, believes that he will he able to overcome the illness and return to good health. He is very optimistic about life in general and has a four year plan which will culminate with him being able to reenter the job market in 1995. Buddhism provides him with what appears to be a busy social calendar also. He helps to run a Buddhist support group for gay men with HIV/AIDS. In general, he believes that people diagnosed with HIV must take control of their lives. They should not allow themselves to be effected by all the negativity in the environment around them. This includes prejudice and small-mindedness, but it also includes the advice of doctors and other service agents, because the latter do not fully understand the needs of people with HIV/AIDS. Scoti is Anglo, gay and forty six years old. He tested positive for HIV in 1990, He says that he felt something was wrong for several years prior to that but was too afraid to test. He had a bronchial problem about two years ago which was never fully diagnosed. However, since it responded to a treatment for PCP, he is considered to have AIDS. Scott lives with a companion in a small Section 8 apartment in the Mount Washington area of Los Angeles, just north of downtown. He has been in the neighborhood for about ten years, prior to which he lived in West Hollywood. He was an alcoholic over a decade ago but cured himself through Alcoholics Anonymous meetings. He believes that the psychological strength he developed during that period is of great help when dealing with HIV. Scott also occasionally attends the Course in Miracles, a lecture series which helps to change people’s perspectives about challenges they face in day-to-day life. Whilst he has always been someone who liked to spend time at home, he admits that the illness has done much to sap the energy he once had. He likes to work out at the gym, but has not been feeling up to it recently. However, despite this lack of energy, Scott does try to undertake an occasional catering job to help pay the bills. It also gives him an opportunity to meet old friends in the catering business. 92 A key response (o the critical distance question, bound up with Postmodern thought, has been the trend for ethnographers to "position" themselves. In this sense, self- reflexivity or self-critique has become a central element of ethnographic methodology; the researcher must critically assess how her background, her knowledge, her biases may impact the overall outcome of the study. As Mascia-Lees et al. (1989, 19) suggest: When anthropologists include themselves as characters in ehtnographic texts instead of posing as objective controlling narrators, they expose their biases. W ithin the context of this study, it is imperative that I make a statement regarding my "position". While I have no intention of including myself as a character within this text, there can be no doubt that my perspective has colored the nature of this thesis. Clearly, the most important statement to make is that I do not have HIV or AIDS. While my knowledge of the illness has increased exponentially over the last twelve months, any insight that I have is necessarily limited by my HIV-negative status. Indeed, part of what this thesis is about is the immense impact that HIV/AIDS, a terminal illness, has upon a person’s outlook on life. Directly quoting respondents is perhaps the closest I can come to communicating the effects of the illness. An additional comment concerning the illness is that I did not know anyone (either friend or associate) who was living with HIV/AIDS, or who had died from the illness. This was a disadvantage because it meant that I had no first-hand experience with the illness prior to the study, but it may also have been advantageous in the sense that I had fewer preconceptions about how the HIV and AIDS would affect each of the respondents. Second, the fact that 1 am not gay is of particular relevance. In some ways, I feel that this has clearly limited my ability to understand the lives of the majority of 93 respondents (both before and after diagnosis). I consider m yself to be accepting of all sexual orientations, yet this outsider-looking-in stance has troubled me because I feel, quite correctly, an inability to appreciate some aspects of gay life,1 and I therefore run the risk of attaching heterosexual values to homosexual experiences. Also, not being gay means that not only am I unable to fully comprehend people’s experiences, but that I may be unable to conceive of questions which probe important ureas of gay life. Finally, I want to briefly comment on my status as a volunteer at AIDS Project Los Angeles. It may appear inappropriate for me to have been volunteering at the same time as I conducted my research: on the one hand, because it gave me a vested interest in the outcome of the thesis; on the other, because my role as a volunteer was used as a means of recruiting interviewees. In reality, however, I believe that the two are ostensibly one and the same. Volunteer work formed an important component of the research since the days spent volunteering provided a wealth of information and insight about live with HIV/AIDS that simply could not be obtained from elsewhere. Similarly, the research is also, in a sense, an important part of my "volunteer work": in the first instance, because the interviews provided respondents with a sympathetic ear to listen to the problems they were dealing with and the issues that concerned them; in the second instance, because the ultimate goal of this thesis is to provide a better understanding of the problems faced by som eone with HIV/AIDS, and, in turn, to have that understanding made available to others. 3 Here again, I must he cautious. I do not intend to essentialize "the gay man" or "gay life", but simply to emphasize that there are some aspects of interviewees' lives that differ from my own, and hence, my understanding of them is limited. 94 CHAPTER 4 Living with HIV and AIDS: The Individual I have suggested that the precise nature of life with HIV/AIDS is determined by a series of interrelated factors peculiar to each individual. The purpose of this chapter and the four that follow is to identify and explain the variations in the quality and extent of daily life following diagnosis. Employing the theoretical framework that was developed in chapter 3, five factors are identified as being important determ inants of these variations: the individual, the social network, proximate service providers, the surrounding community, and the broader social context. The first of these factors is the individual. Indeed, the three dimensions identified in chapter 3, (physical health, psychological well-being, and socio-demographic profile) served as useful tools to explain the changing daily worlds of the various participants of this study. 4.1 Physical Health The physical health of interviewees following diagnosis is naturally a major determinant of their experiences with HIV/AIDS. Although for each person the nature of these experiences may be unique, some generalizations are nevertheless possible, suggesting that the illness imposes important, and at times severe, constraints on the geographical extent of an individual’s daily world. Among interviewees, symptoms that appear as a result of HIV itself, or as products of an opportunistic illness, frequently challenge the existing morphology of respondents’ daily lives. Diminishing health often implies shifts in both the form and function of the body. Symptoms such as wasting and weight loss induced by a variety of different conditions may bring about severe changes in the aesthetic form of the body, leff, who had come 95 down with hepatitis shortly after diagnosis, described the impact that it had on his physique. The hepatitis w«,v what realty made me sick. It lasted fo r at least a month and a half, and I dropped twenty pounds. That's one o f the main things that I'm worried about, cos I used to have such a beautiful body, and now it's gone. Similarly, Harry experienced rapid weight loss just prior to diagnosis, with his weight dropping to around one hundred and ten pounds due to severe dehydration and diarrhea. forcing him into hospital. The appearance of K aposi’s Sarcoma has had important impact on Craig. Aside from the deterioration in physical health brought on by the illness, the emergence of characteristic purple lesions has done much to alter the surface appearance of his body. This change had several consequences for Craig, not the least of which was the psychological damage which acted to diminish the extent of his daily world. The significance of visible symptoms is discussed in greater detail below. As well as altering the aesthetics of the body, HIV/AIDS and associated opportunistic infections can do much to hinder the performance of daily tasks. Interviewees provided many exam ples of the ways in which their immediate movement had been impeded. Harry, for example, describes the way he felt after leaving hospital following diagnosis: I was in bad shape. I spent a week in the hospital, and y 'know I was so weak and so sm all when I got out o f the hospital, I tried to do a couple o f push-ups, and / couldn’t even do ten push-ups. A sim ilar lack of energy was described by many. Scott admitted that deteriorating health was increasingly impeding his ability to perform everyday tasks, and described the frustration he felt when a lack of energy stopped him from doing even the most basic of 96 chores around the house. Sometimes you ju st get pessimistic about it. It's really frustrating, there \v nothing worse than when you ’re laying on the couch, and you c a n ’ t even muster enough energy to go and wash the dishes. In addition to genera) feelings of lethargy and weakness, the appearance of other more specific problems also take their toll. For Jim. the onset of Myopathy has meant periods of time when any movement of his arms and legs has been painful. When asked about whether getting around was a problem, he replied: There \v good days, and there’ s bad days. Sometimes | I ] d on't feel good, my legs are hurting too much, or my arms hurting too much or my stomach \v bleeding. There \v ju st a lot o f things. I try not to dwell on it. Constraints of a similar magnitude were also reported by Harry, who was suffering from the tail-end of a bout of FCP pneumonia at the time of the interview, and also from Jeff, who had found almost any movement too demanding during the m onth-and-a-half that he coped with hepatitis. The demands that illness places on the individual’s body are also felt in interpersonal and social environments. In some instances, limited mobility alone may be insufficient to break social ties. However, where encounters were fixed by their locations, diminished mobility worked to significantly reduce interpersonal contact. Jeff, for example, had been unable to play any sports during the summer due to poor health, and felt that he had missed out tremendously as a result. In a similar fashion, Scott’s social life has been constrained because he rarely feels he has the energy to go to clubs, something that had previously been an integral part of his weekly activities. Thirdly, Harry explained how he used to delight in taking off at a moments notice to visit friends 97 in different parts of California, and how this had changed with the appearance of HIV: Y ’ know, due to my energy level ...I d o n ’t venture out as fa r as I used to. It used to be that I could get up and go to San Francisco, San Diego, or something. / would ju st up and go, call somebody I know when I got there. I don't do that anymore, I kinda stick closer to home base. Instances where the illness has acted to diminish an individual's daily world are manifold. Despite his positive attitude, Juan makes it clear that HIV has reduced his daily path: I have slow days when I know that perhaps it's best if I read a book and watch T. V. and d o n ’t go out and wash the car, and do not go out and do gardening, and do not go out walking. There are days when I know it ’ s best if I ju st enrich my mind. This type of day-to-day fluctuation in people’s activity was reported by many. On such days, time was often passed within the home and the immediate vicinity of the house or apartment. Jim reported that he had recently been forced to practice a "one day in/one day out" routine to give his body sufficient time to recover, but he had found the days at home very confining. As he said: I found sitting here every other day was too confining. To me it w asn't living, I like to get out, go to the movies, or the park, or shopping center; to me th a t’ s living. I know it runs my body a little more, but th a t’ s ok, I d o n ’t wanna be sitting in at home. An important consequence of these variations in daily path is that many respondents find it necessary to give careful thought to their activities. Ron, in particular, emphasized the importance of staggering his appointments and trips throughout the week so as not to overburden himself. Since he is suffering from neuropathy, this includes scheduling appointments in the afternoon because his legs are at their best later in the day. It also includes leaving Mondays free for recuperation: 98 Usually M ondays are fo r me. [They) are the days that 1 use to regroup, I try not to schedule any thing...unless it's something that I want to do. I chill out, I play with the cat, / chant, 1 try to get m yself ready fo r the rest o f the week. The week’s activities are planned to the last detail in Ron’s diary. For others, the organization may be a little less structured, depending for the most part upon relative change in their health. In Harry’s case, pneumonia has meant that his physical condition has been poor in past weeks. As a result he has tried to keep activity to a minimum, grouping together those tasks that must be performed so that they can be accomplished during a single outing. / been keeping everything to a minimum. Yesterday I went out one time and I had a lot o f things to do, so I tried to do them all w hibt / was out, but th a t’ s pretty much it. I don't go in and out. / have to be careful right now, I ’ m not feeling up to strength. I f I get out o f breath taking the steps, then I know that something is wrong. A notable aspect of this discussion concerns the extent to which individuals may be obliged to leave their homes, regardless of their physical condition. The study indicates that these instances are often related to the individual’s need to access the resources of one or more service providers. As well as variations in the level of day-to-day activity, several of the men also experienced more prolonged periods when illness diminished the extent of their personal worlds. I have already mentioned Jeff’s ordeal with hepatitis. During the month and a half that it lasted, he was forced to spend the majority of the time at home in bed. Similarly, Ron had spent the month of January, 1992 literally confined to the Dignity House AIDS Shelter, suffering what he described as a "diarrhea blitz". And of course, if and when an illness progresses, constraints may become increasingly severe and long- 99 lasting. Ron suggests that his life "came to a .screaming halt" following diagnosis with M ycobacterium Avium Complex (MAC). Where hospitalization occurs, as it had for four interviewees, the physical constraints of illness are augmented by the authority constraints of medical staff and hospital routine. In addition, any prescribed medication also acts as a very significant influence on an individual’s physical condition (of. chapter 6). 4.2 Psychological well-being The psychological profile governs the extent to which a person will be able to cope with the trauma of diagnosis as well as a variety of other emotional challenges, and because of this, it may have a significant impact on the shape of their world. Psychological well-being may be impacted by a wide variety of factors including diagnosis itself, the physical changes that follow, the reaction of friends and family, and the attitudes of the surrounding community. Here however, I focus on the way in which individuals have been affected psychologically by the illness itself, leaving other influences to be discussed in subsequent chapters. Tw o points should be made initially. The first is that life following diagnosis is, not surprisingly, an emotional rollercoaster. As each day passes, the individual must learn to cope psychologically as well as physically with manifold challenges that HIV is capable of creating. The second point is an extension of this; all respondents suggested that the psychological strength to deal with HIV and AIDS was of crucial importance. Indeed, there is a strong consensus that the psychological and the physical, mind and body, were inextricably linked. Changes in physical health will therefore naturally affect a person emotionally. At the same time, however, the power of the mind is seen to play 1(H) a vital role in coping with, or preventing physical deterioration. W hen asked whether a positive attitude was important, Armando replied: Yeah, you have no choice..you have to deal |w ith it| or you die. / think the best way is if you try to be positive, and do everything normal; th a t’ s what helped me. I always say, if you got a problem with your mind, you got a problem with the whole o f your body. Similarly, Craig attached immense importance to the state of mind following diagnosis. His response went as follows: Definitely, it's ninety percent o f it because I've seen people that have been diagnosed and they ju st start going downhill because they figure they ’re gonna die, but nine years after I was diagnosed, Dm still O.K. Among interviewees, a belief that the mind is able to achieve control of the corporeal self appears to be an integral part of living successfully with HIV and AIDS. Regardless of whether this claim is valid (and there is much evidence to suggest that it is), for each person the simple belief may provide a vital psychological boost. However, despite its obvious value, a positive attitude is not always easy to maintain. W ith the onset of HIV, the individual’s psychological resources may be depleted in a number of different ways. The first of these, and arguably the most serious, is the impact of diagnosis itself. As Juan suggests: When I found out that / hy/.v H IV positive, I thought I was going to die, and / wav having too much fu n to die. My life was all wrapped up, and then suddenly it was all unwrapped, and I thought "that’ s it, i t ’ s over!" Many people reported the same feeling of finality, and the sense that death was now right around the comer. As well as the initial trauma of diagnosis, physical deterioration induced by HIV/AIDS may also do much to weaken individual resolve. Jeff describes the difficulty 101 he had recently whilst attempting to leave the house: Yesterday, / wanted to go to the L.A. County museum o f art. I got up, I got dressed, I put on my shoes, hut I ju st c o u ld n 't.../ was too tired, I was too weak. It really saddens me when I want to do something and I can't; it kills me. Jim described a similar frustration when illness prevented him from leaving his apartment, because "being out there" was a part of his life. In addition to direct physical limitations, illness also does much to weaken individuals’ confidence in themselves, and their ability to get around. Another factor related to declining health is that of dependency and loss of control. The fact that HIV/AIDS necessitates a gradual surrendering of control over one’s life may produce about a negative psychological impact. Armando comments: I worry about [dependency |. Always I worry about if I get sick, and I have to ask fo r help ...because I ’ m not used to it. Always when / tmv young, / do all my own things. I no have to wait fo r nobody to do nothing. Sim ilar concerns were expressed by others, particularly concerning people’s dependence on welfare payments, or where a decline in health had made them more reliant on others. Even though some claimed that they had no difficulty relying on friends and/or family for support, there was a clear sense that this assistance, particularly when given unnecessarily, had a deleterious effect on some of the respondents’ self-esteem. Troubling thoughts about the future represented an additional source of psychological concern. Although individuals were busy for much of the time (something that was often a conscious strategy), moments of reflection caused them to extrapolate their declining health into the future. This was especially true if they have already witnessed friends deteriorate physically because of HIV/AIDS. Such anxiety may also 1 0 2 be particularly acute if worsening health is associated with an increased visibility of illness. The prospect of visible symptoms, whether physical or mental, may be enough to destroy even the strongest defenses against depression and anxiety. Mongo was unique among interviewees in that he was largely unwilling to admit that HIV had any impact on his life. Yet this effort at denial was not able to cover the fact that he is concerned about the possibility of physical and particularly aesthetic deterioration. His attempt to play down the relative significance of HIV and AIDS provides some indication; I saw this woman on the bus, ...her face was all caved in. That shows that we have something to be thankful for, thank god we do have HIV, there are programs fo r it. People who are disfigured? I couldn’t cope with that. I f I have to have a colostomy, crippled limbs or that sort o f stuff, that would affect me, something visible. Psychological challenges impose their own spatial constraints upon the individual’ s environment. The emotional cost of diagnosis and subsequent changes in health may both curtail a person’s daily path. Juan explains why he chose not to leave his home for several months after the test result: It was my internal problem. I fe lt "oh god!" How could I face the joy o f riding in a beautiful old convertible on a lovely day, or going out and doing something fu n with this death sentence hanging over me. It was overwhelming fo r a long time, and I chose to deal with it by staying in fam iliar surroundings. Reactions of this nature were common following diagnosis, and they represent severe discontinuities in both daily path and social network. Similarly, where physical problems occur because of HIV, the immediate constraints imposed by a functional decline are bolstered by a loss of confidence in one's ability to get around, and anxiety about further complications. Discussing his daily activities, Jeff commented: I isolate myself. I f I have to go somewhere, I think like a little old lady, I go in 103 the middle o f the day, ...and I don't go out after dark. See, what's so scary |is| you can get diseases from other people that, even if they 're really unhealthy, they w on’t get. It scares me when I ’ m on a bus, i f a woman coughs, / automatically think I ’ m gonna come down with something. J e ff s anxiety can be compared with A rm ando’s reluctance to venture out when conditions are perceived as unfavorable. When asked how HIV had constrained his movements, Armando suggested: Now, / try to prevent things. I f the d a y ’ s cold then I try to keep at home so I don 7 get a cold or pneumonia or something like that. But before, it was cold, I didn 7 care, now I worry. I f you go someplace, that place gotta be safe fo r you. At an interpersonal level, similar changes may also be wrought in the individual’s environm ent by psychological problems. The above examples all indicate varying degrees of isolation from a network of friends and family as well as from an established daily geography. Other instances of isolation stem from problems of dependency. Harry returned to Los Angeles from New York following diagnosis because he said that he had been unable to deal with the over-supportive reaction of his family: They go overboard, they really worry too much. I f I was nearby, I ’ d he smothered. I don 7 like that, ...makes me fe e l sicker than what / am. I don 7 know how to handle being sick when I'm around people and they know that I am. As a result, the structure of his social network has changed significantly. Craig also reveals one way in which anxiety about the future may act to reduce an individual’s interpersonal environment. When discussing people’s reaction to illness, Craig ventured that he could understand why people tried to avoid it. Even though he was HIV-positive, he found him self spending less and less time with friends who were suffering from more serious AIDS-related health problems. Here again, emotional problems stemming from HIV/AIDS were the direct cause of declining levels of social interaction. 104 To conclude the discussion on the psychological impact of HIV/AIDS it is important to emphasize that not all psychological changes reported by individuals were negative. Since many people’s health fluctuated considerably from day to day and week to week, prolonged periods of relatively good health did much to improve people’s spirits about life. Indeed, several people claimed that during these periods they were actually able to forget about HIV altogether. In addition to these periodic boosts, interviewees reported that being diagnosed had also forced several more substantive, positive changes in their psychological make-up. The precise nature of these shifts varied among interviewees, but many shared common themes. In particular, emphasis was placed upon the importance of living life to the full, the value of friends and family, the importance of not taking things for granted, and the need for honesty and openness. Several quotes help to illustrate these themes. Craig explained that the shock of his diagnosis, followed closely by the death of his lover in 1985 had helped him to make the decision to leave San Diego and journey to Los Angeles to attend Art college: It was "well, what do I really want to do ? ” That's when I decided to come up here fo r college. I ’d always wanted to go to A rt school, so it sorta prioritized my goals at the time. I thought that's what I wanna do, so I 'm gonna do it. Both Armando and Harry placed particular importance on the value of friendship. Armando suggested that seeing so many of his friends and associates die had galvanized him to make caring for others his primary concern. Harry stated that: I ju st had a whole spiritual change go on in me. I ju st realized how important people are to me, more than I ever did before. Lately, I've been trying to stay in touch more, ...y'know ju st trying to put forth that effort, trying not to let my friends slip out o f my life. 105 Finally, Scott captured many people's feelings when he explained how much his attitude towards life in general had improved since testing positive: You don ’t take things fo r granted as much, and you appreciate the little things more, and you learn not to sweat the big things. I d o n ’t know, I fe e l like I ’m more involved in the immediate present than having any long-term goals, and that \v something that everyone could avail themselves o f . Such themes are perhaps unsurprising given that interviewees had all experienced what was. and continues to be, a life-changing and life-threatening, experience. The value of life itself, of friends, of family, and of the manifold phenomena which may otherwise be accorded little significance in daily activities becomes all too clear when their existence is threatened. Yet despite its predictability, the importance of this reaction should not be underestimated. To varying degrees, the positive psychological changes that are experienced may spur individuals to challenge precisely those factors that conspire to diminish their daily worlds (e.g. Harry’s determination to maintain contact with his friends). Other interviewees had made similar commitments. Jim was resolved to remain in his own home regardless of the physical hardships that might befall him. Armando was determined to maintain his physical health to the best of his abilities irrespective of w hat his doctors told him. Through his Buddhist practice, Ron had: ...set a five year target from 1991 to 1995 that / was going to be the first person through chanting to change poison into medicine, to show that I could transform my life, ...to live with it positively. It is clear that life following diagnosis is by no means solely about decline and loss. For each individual. HIV/AIDS produces a combination of both emotional lifts and setbacks, the balance of which is subsequently be reflected in the geography of lived space. 106 4.3 The socio-demographic profile Four socio-demographic factors did impact on different people’s experience with the onset of HIV/AIDS: race and ethnicity; age; income, and sexual orientation. The first significant socio-demographic characteristic is that of race and ethnicity. A comparison of the experiences of White and African-American participants indicates little difference. For the most part, both sets of respondents suggested that they had encountered increasingly positive attitudes concerning HIV/AIDS. However, these similarities can be contrasted markedly with comments made by Armando, a Cuban, regarding Latino attitudes towards people with HIV/AIDS. When referring to the Latino section of the Silverlake community he had this to say: I d o n ’t know about white people, y'know, a different culture, ...but I know about Latinos, and |they are] really concerned about |H IV |, still scared about other people thinking about AIDS. Maybe i t ’ s a cultural thing. If you look healthy, they don 7 worry about you. If you look skinny, right away they think "oh, maybe he have HIV, maybe he have AIDS." In spatial terms, these cultural differences may hold several implications for Armando. He admits that his movements within the immediate community are very limited because he does not feel comfortable dealing the local (Latino) population. The majority of his friends live elsewhere, and he rarely walks to nearby destinations (shops, bars, etc), preferring to use his car to travel further afield. A second socio-demographic variable is age. I have suggested that the age of a person diagnosed with HIV may be significant for two reasons: first, the older the person, the more experience of human fatality he was likely to have had, and hence the more chance he would be able to deal with the thought of his own demise; second, the younger 107 the person, the more physical stamina he was likely to have. During the course of the interviews, support for these hypotheses was generally not forthcoming, however one finding did emerge. This was the fact that older persons had more time to accomplish their goals in life. A sense of accomplishment might provide a better starting point from which to deal with the threat of impending death, and is exemplified by Juan: I realized that my mortality is right around the corner, so I ’ve reviewed my life. and I fin d my life not lacking. On balance, I feel that I ’ve lived a good and honest life, and if I did go, then so be it . This statement of satisfaction can be contrast with the following statement from Jeff, who felt that a positive attitude was very hard to maintain because: I'm young ...my god, I ’ m only 31, I ’ m young, there’ s so many things that I want to do, so many experiences. It's very hard to stay positive. O f course, it would be wrong to attribute the different attitudes solely to age differential. Psychologically, Juan and Jeff are at very different points in their post-diagnosis lives, and hence one might expect Juan to possess a greater ability to deal with thoughts of death. Such a qualifier creates something of a circular argument however, because Juan’s age may be one of the reasons why he has been able to move through a period of withdrawal and isolation more rapidly than Jeff. It is also problematic to equate a person’s age with their level of personal achievement or satisfaction. A variety of other factors are also responsible for the relative success of a given individual, and also for the way in which success for that individual is to be gauged. Mongo (at 53 the oldest of the participants) is far from content: Today has been a pretty depressing day fo r me, because fo r the first time I d o n ’ t have a pair o f socks to wear, I d o n ’t have a pair o f shorts to wear. I t ’ s my fault, because I ’ve neglected to take care o f some basic things. 108 M ongo’s predicament is related to a third socio-demographic variable; individual income. Financial status appears to be an important influence on quality of life following diagnosis for several reasons. First, diagnosis and the subsequent appearance of symptoms, however mild, have made full-time employment problematic for many respondents (an issue that receives further consideration below). However, the drop in income associated with unemployment is a relative one. As a result, the magnitude of adjustment in living standard will vary enormously, and this in turn may affect the psychological impact of the illness. Juan, for example, is clearly depressed by the fact that welfare payments barely help him to maintain ''what's left o f a lifestyle". When asked, he explained that his daily activities had been impacted because: 7 have less money to spend on restaurants, on petrol. When you have things like a mortgage payment, ...you start putting things in order and suddenly thirty or forty dollars spent at a restaurant, ...I c a n ’t afford that, whereas before it never- entered my mind. Things that were at the bottom o f the list like the electric bill, suddenly they’re at the top. Yet at the same time, Craig is able to suggest that the financial security he has achieved since diagnosis is better than any he has had before. He is able to: ...live in a better place, a better neighborhood, actually be able to eat without worrying about all my money going to rent and bills. Having had a succession of poorly paid jobs followed by several years as an art student, Craig finds the welfare payments and section 8 housing provide him with an "adequate" and, for the most part, reliable standard of living. As well as a psychological impact, the income variable may also determine an individual’s access to a range of material resources such as home-ownership, a car, TV and VCR, and so on. A lack of these resources appeared to be the primary reason for 109 M ongo’s despondency. It may also determine the magnitude of financial burdens that a person has taken on prior to diagnosis. Although Juan lives in a pleasant house, owns a luxury car, and has a variety of other consumer items, he and his partner also have to contend with the mortgage payments and what he describes as "about twelve thousand dollars o f credit card debt, and another couple o f thousand on department store cards". Opportunities for formal employment were largely closed to many respondents. There are several reasons for this. First, the physical challenge of the illness often made it very difficult to cope with the demands of employment. Second, many felt that diagnosis had made them unemployable regardless of physical health. Finally, virtually everyone stated that they could not afford to return work formally because it would jeopardize their access to welfare benefits, and especially Medi-cal. Despite these barriers however, several ways to obtain income did exist. When Juan needs to raise money to cover the cost of utilities and so on, he sells pairs of his used jeans and cowboy boots to a boutique on Melrose avenue. Such a strategy is, of course, dependent upon the prior possession of such items, returning us again to the question of income/social status. A second strategy employed by several of the men is the sale of art work. It was something of a fluke that four of the men I interviewed were budding artists. Mongo, Armando, Craig, and Harry all said that they had made a few dollars here and there from the sale of their art work. Thirdly, two of the interviewees had been able to borrow money from friends. These loans varied from a few dollars to tide people over (a service that was often reciprocated), to more substantial amounts typified by Mongo: 1 10 I Jan ) and I have been best friends, I tan borrow money i f I need it, ...they'd loan me money. I owe Jan now about 4 or .5 hundred dollars, I been on to her fo r almost a year now, (but] that’ s no problem. Finally, two of the participants have so far been able to maintain access to paid employment. Through established contacts in the catering world, Scott has been able to obtain piece-work from time to time at different events, providing what he describes as a vital financial cushion. In addition. Ron has recently been offered the opportunity to help manage the apartment complex that he lives in, with the understanding that any financial dealings will remain under the table so that he can maintain access to Medi cal. Regardless of the strategy employed, the ability to generate income over and above that provided by welfare seems to be an important determinant of the nature of day-to-day life for virtually alt interviewees. Financial problems were clearly some of the most serious to emerge in the post-diagnosis period, and made living with HIV and AIDS that much more difficult. In spatial terms, limited income was often cited as one of the most severe constraints on activity following diagnosis. Scott sums up the feelings of many people when he says: I used to like to go to the movies a lot, hut I haven’t been able to afford that in the last couple o f months. It ju st seems like there ’ .v no disposable income. I used to like to go out to eat, but I c a n ’t even do that. It becomes more how you can get by, instead o f what you feel like doing, and i t ’ s a shame because I have more time than a lot o f people. Juan cited money rather than physical health as the primary reason for his inability to visit friends in Palm Springs. Armando also stated that it was a real struggle to find gas money for his car, a fact which may have limited the extent of his daily path. Finally, Jeff says that he has been unable to relocate to a place nearer the coast because he feels Ill it would be too costly. Financial constraints thus form an important influence on the extent of life following diagnosis. W ithout sufficient income, an individual’s world may be diminished regardless of physical and psychological well-being. The final socio-demographic influence is sexual orientation. Despite the fact that all but one of the participants were gay, the responses from the one straight respondent. Mongo, differed in two significant and somewhat paradoxical ways. On the one hand. it was clear that he did not feel a part of the client community at AIDS Project Los Angeles, largely because he believed that the majority of clientele were gay. Although he did not say so directly, 1 sensed that this was something he lamented: I wanted to do volunteer work, but I don't knt>w anyone over there. I mean / know some o f the official bodies cos I go over there, but / don't know any o f the clients. Y ’know, / don't feel like I ’ m better or nothing like that, / mean I d o n ’ t know them. It's basically homosexuals that I see there. In this sense. M ongo’s feeling of unfamiliarity prevents him from establishing APLA as a more significant node in his daily path, and from making contacts that may prove valuable in his day-to-day experience with HIV and AIDS. Yet on the other hand, this sense of missing out on the camaraderie that he witnesses among the gay men at APLA is parallelled by an equal and opposite desire to distance him self from what he sees as the guilty party of the AIDS epidemic: the gay community. Although Mongo is not exactly sure how he contacted the virus, he is certain that it was either as a result of heterosexual intercourse or blood transfusion. As a result, he is keen to differentiate between these "acceptable" methods of transmission and the deviant method; homosexual intercourse. The end-product of this argument is to present HIV as an illness that is stigmatized solely because it is associated with the homosexual population. W hen asked w hether the illness receives a bad im age in the press, he said: Yeah it does, it really does. Y'know the stigma is there, because like you say, eighty five or ninety five, or as far as I'm concerned, ninety nine percent o f [people with HIV and AIDS| are gay .../ know they are. 113 CHAPTER 5 Living with HIV and AIDS: Social Networks The support offered by friends, family, and acquaintances who comprise a social network helps to determine the ability of a person to deal both physically and psychologically with HIV/AIDS. Some evidence suggests that the support available from a network may decline immediately following diagnosis. The discontinuity and upheaval produced by testing positive may be sufficient in many cases to simply disconnect an individual from an established pattern of existence. Juan, for example, suggests that: One o f the things that happens is that when you fin d out, you feel totally alone. You fe e l that way whether you are or not. Some people crumble and never recover; others such as m yself take the hard way. However, once the initial trauma is overcome (a process that will vary among individuals), the presence or absence of a supportive network can become a central influence on the individual’s daily world. Before I begin to discuss the significance of social networks in more detail, it is important to stress that the type of support required will undoubtedly vary. For instance, an overprotective response from friends or family, although well intended, may have an adverse affect on the individual if it produces unwanted feelings of dependency and helplessness. It also serves to define the illness as the primary component of the individual’s identity. As Craig explains: The most help is ju st not being shocked by it, treating me as a normal person versus somebody w ho’ s sick and dying. For each person, the precise reaction to support will differ; some will undoubtedly be better at asking for, and accepting, help than others. However, the majority of 114 respondents recognized that, with time, they had become better at requesting and accepting support. Sometimes, the changes has been, at least in part, a product of necessity. A rm ando’s independence, for example, is only compromised when absolutely necessary, as in this case of a medical emergency: That day I can't drive, so I had no choice. / call [my friendl and he come over and take me to the hospital. But i f I can do it myself, ...I’ m not j;oinf> to call anybody. So far I have focused only upon the problems people encounter in coming to terms with others’ help. Regrettably this is not the only difficulty that individuals may face. A person in need and willing to accept help, but who receives no offers of assistance, may find others' complaints about being fussed over particularly hard to comprehend. Several general points may be distilled from these preliminary remarks. First, a willingness to request and/or accept help will vary among individuals. Second, for each person this willingness fluctuates through time as HIV/AIDS forces one to cope with a succession of increasingly serious challenges. Third, social networks vary in their ability to provide the appropriate level of support. A given network will also change over time. I now consider the importance of friends and family in the lives of each of the respondents. 5.1 The role of friends Among interviewees, friends appear to be of greater significance than family in day-to-day lives. However, the levels of support received varied considerably. In general, respondents felt that they had not lost existing friends because they had been diagnosed with HIV, although several suggested that, indirectly, the illness may have had I 15 an impact (for example, losing touch with work colleagues because em ploym ent was no longer possible). At the same time, most people suggested that they had made new friends in the period since diagnosis, either as a result of illness (for example, meeting people at one of the service agencies) or through other channels. Jim. for example, has met several people as a result of volunteering at APLA. Likewise, A rm ando’s involvement with the support group that he helps to run means that he has encountered a large number of people solely because of their problems in dealing with HIV. Conversely, the majority of friends Craig met in the last few years have been a result of attending art college, and not because of his illness. Others (Juan and Mongo) claim that the illness has had little effect on their circle of friends. They have made few new contacts, and the majority of their interaction takes place within a circle of friends established long before diagnosis. There is, however, a interesting difference between Juan and Mongo in terms of their willingness to admit their HIV status. For Juan, the question appears to have been how to break the news. As he says: It never occurred to me not to tell them, hut the second thought was how to tell them. So finally I was watching T. V. one day, and they were saying something about M agic Johnson; h e ’ d just gone through his nonsense. So I called everyone up and said "what do Magic Johnson and I have in common?" That’ s how I told them. For M ongo, the situation was very different. Although he thought his friends would be fairly sympathetic about HIV and AIDS, he saw no reason to advertize the fact that he was HIV-positive, preferring to tell only a "select few ". Prior to the interview at his apartment. Mongo asked that I not say too much about exactly why I was there to the I 16 people who were visiting. His attitude may be a further result of the stigm a that he perceives to be attached to the illness because he is not gay. None of the other respondents were unwilling to tell friends about their status, and it is undoubtedly a sign of the impact of HIV and AIDS upon the gay community that all of them have, or have had, at least one HIV-positive friend. The fact that a gay man diagnosed with HIV/AIDS is more likely to know someone who has been through the same experience has two implications: first, it may be easier to reveal news of diagnosis to his immediate circle of friends, rather than covering it up; second, several friends or associates may be able to provide some insight into how to begin to deal with the illness. For straight people, even though they may benefit from the concentration of services within a community like W est Hollywood, they may feel that immediate friends are likely to be far less accepting of HIV/AIDS, and so decide not to divulge news of diagnosis. Such a decision may have significant consequences for both emotional and material levels of support. M ongo’s ongoing concern about the reactions of people close to him appears to have made dealing with illness that much more arduous. Yet it remains problematic to make generalizations of this nature. Despite the high levels of awareness about HIV/AIDS that exist within the homosexual population, being gay does not automatically assure a person of support following diagnosis. The majority of interviewees suggested that gay friends reacted well to news of the illness, but it was still common to find exam ples where friendships have either ended or been renegotiated because of HIV/AIDS. Although he was not willing to discuss it in detail, 117 Scott made it clear that he had encountered negative responses from friends in the past: I have experienced it, certainly with form er employers and friends. Suddenly they act like they owe you money and it's hard to take. You ultimately realize that it's their issue that they're dealing with, hut i t ’ s hard not to take it personally. One of Arm ando’s neighbors, who is also gay, has been a friend for some time. W hilst he is willing to spend time with Armando in the privacy of their homes, he has literally refused to go anywhere with Armando that might imply that he is also HIV-positive: M y neighbor, he know that I H IV and everything, and sometimes I invite him to Being Alive, hut he say "oh no, you crazy! I f people saw me over there, they 're going to think that I have H IV. " H e's a nice guy, he come here and sit with me, hut he don't wanna he around people with HIV. In these instances, rejection may be more a function of the stigma attached to HIV/ AIDS rather than an irrational fear of contagion.1 Nevertheless, the loss of social support may be detrimental to the individual’s daily world. At the most basic level, a weakened or lost friendship may significantly reduce an individual’s interpersonal environment. Fewer potential destinations, and a reduced opportunity for social interaction during the day may have detrimental psychological impacts. In general, among respondents a lack of support was manifest either as a material/ practical problem or as an emotional/psychological deficit. Harry provides an example of the former. He claims to have quite a large circle of friends, but his comments concerning a recent bout of PCP pneumonia raise doubts about their ability and/or willingness to help him. Talking about his weekly trip to APLA to pick up groceries, he says: 1 cf. Kowalewski’s (1988) work on boundary maintenance within the gay population. 1 IK There's been times when / w'cw hardly able to make it there to pick up my stuff, and it ’ s been hard to fin d people, ...cos other people were doing other things. One time, I was suffering pretty bad from the flu and laryngitis, ! had to catch the bus, and it was pretty rough ...y ’ know I u m sick and I had no help at all. I did it | but j sometimes I ju st need a little bit o f help. During periods like this, when a medical condition necessitates a reliance on others, an absence of support can be particularly harmful. Isolation from people and places may be difficult to overcome and it may also be costly if available resources cannot be accessed. For some respondents, such problems did not arise. Jim has been suffering quite badly from myopathy in recent months. The pain in his arms and legs has meant that his regular walking tours around the community have been severely curtailed, and driving has become increasingly difficult. However, he is still able to get out because a close friend is often able to drive him around when his immediate movement is restricted. This relieves the kind of pressure that Harry describes. If there is somewhere that Jim must go (e.g. a doctor’s appointment, or a service agency), he can be fairly sure that getting there will not be a problem. As well as practical help, respondents’ access to material assistance also varied. As was discussed in chapter 4. several interviewees were able to borrow money from friends when times were hard. In addition, the two people in long term relationships at the time of the interviews both benefitted from their com panions’ financial support. For Jim and Juan, their respective partners proved to be important sources of material security. At an emotional or psychological level, the benefits of having someone to lean on, to talk to, and to be with are immeasurable. W ithin a person’s social network, two com ponents are of particular importance here. The first consists of friends who are also 1 19 coping with HIV and AIDS. Often the shared experience of dealing with a life- threatening illness establishes a sense of camaraderie that cannot be produced elsewhere. Fellow sufferers can also provide important information about the impact of the illness, and about strategies for dealing with the medical and emotional challenges involved. For people like Armando and Juan, the fact that almost half of their existing companions are already HIV-positive suggests that their friendships are reinforced by the shared experience of AIDS. Others may meet HIV-positive friends in the period following diagnosis, often as a result of attending a service agency on a regular basis. Some people. however, may find that neither of these avenues is accessible. After he sacrificed the majority of his friends for a long-term relationship that turned sour, Jeff has found it difficult to make new friends in the recent past. In particular, he laments the fact that he has been unsuccessful in establishing relationships with other HIV-positive men. His reason for wanting HIV-positive friends is clear: / would like to have a multitude o f friends, hut mainly people that are in the same boat. I don't mind negative people, they ’ re fine ...[but| I really think I would feel a closeness to people that are in the same boat. Maybe th ey’ve been through what I ’m going through, and can tell me that i t ’ s ju st a phase. Amidst the apparent advantages of knowing others with HIV and AIDS however, it is important to issue one caveat. Despite the insight and support that may be gained, it will nevertheless be hard to watch the deterioration and death of friends. Interspersed with the feelings of grief and loss will be a constant reminder that the same thing could happen to anyone else. Armando has known twenty two friends die from AIDS since the mid-eighties. He has been involved in caring for many of them, three of whom passed away recently. In addition to the physical cost of fulfilling the care-giving role, the 120 psychological impact is also pronounced: M ost times I ’ m depressed, and I #ot problems with sleep too. It's because you think about it, you see what \v #oin# on with your friend. When you deal with your frien d all these days, and then he die, i t ’ s like you look in the mirror, and say "ok, this could happen to me!" I try not to think about it, but you have to because you see it. For Armando, Craig and others, there are significant benefits and potential costs involved in having friends who are also infected with the HIV virus. On balance, facing the reality of the illness, and seeing one’s own future mirrored in the experience another may, at times, be traumatic; but the mutual understanding and support afforded within such a relationship often appear to offset this. The second vital component of an individual's social network is a live-in partner, companion or lover, who may be an important source of practical/material support. At an emotional level, partners fulfil the role of confidant, listening to fears and concerns, and in turn providing advice and support. They also represent someone with whom leisure activities can be undertaken, allowing thoughts of the illness to be displaced, if only temporarily. Jim is fortunate in that he had a partner as well as a good friend with HIV in close proximity: He and Paul kinda work #ood o ff each other fo r me. They 're both very im portant to me. When one 's not around, I hurt very badly, the same as the other one. I couldn't think o f anythin# better 1 than | to have that contact, that camaraderie. Even when partners are not performing a specific function simply being there is enough. Those who lived alone displayed a clear deficit in this regard. Harry’s relationship, for example, had ended when his partner returned to the east coast. Although he remained hopeful that his partner would return, the absence has clearly had a substantial impact 121 upon the quality of Harry’s day-to-day life: Sometimes I think I spend too much time in the apartment. A lot o f my not getting out is because o f the situation with my friend. Before he left, w e’ d make a point to get out, and when we were in, it was ju st different. Being in with someone you want to be with; the whole experience o f being home was different. As well as the psychological dimension of this statement, there are also strong spatial implications. His companion’s absence reduces the variety of activities that occur within H arry’s daily path, causing him to spend more time at home even when he is feeling well enough to go out. Concomitantly, the absence also works to devalue the subjective sense of place that harry had attached to his home-base, the location where he now spends the majority of his time. Ron’s long-term companion left him several years ago, but occasionally comes to visit; it was clear that when he did, he provided an important impetus for leisure activity, as well as an useful ear to bend: Last monday, Algernon came down and we had dialogue, we spent the day, we had breakfast, and brunch, we went fo r a walk around the neighborhood, we had dinner, and then we came back. Y'know, we had dialogue. 5.3 The role of the family Seemingly less significant than immediate friends in the day-to-day life of most respondents, families were nevertheless an important influence on well-being. Variations in the type of relationship that people had with their families were considerable. A majority of the men had told some members of their family that they had been diagnosed with HIV, although this did not imply that they were accepted. O f the three who had not revealed their diagnosis, Armando claimed that it was because he did not want to worry his parents in Cuba; after all, "maybe they fin d the medicine, and then they worry about me all these years fo r nothing." Mongo continued to conceal his concern about others’ 122 reactions, saying "it’ s not that / w on’t tell them, but why bring it up?” Finally, Craig was more open about his concern that the illness would simply be unacceptable to his parents. Although he had told his brother and sister, they had since advised him not to tell their parents because: They’re more religious, more baptist-oriented. [AIDS] is not within the religious sphere o f normal things. • / really don * t know how they'd react. Among those who had informed their families, four issues were pertinent: if and when they see them; where the family lives; how well the news of diagnosis was accepted; and the type of support that is provided. For Jim, Juan and Scott, the relative proximity of their immediate families, coupled with the latter’s acceptance of them being gay and having HIV/AIDS meant that familial contact was quite frequent. Although apparently not significant sources of materia! assistance, family members represented people with whom time could be spent and activities undertaken. Juan, for example, says: My sister and I are very close. She '.v a single nu)ther working in San Diego, and she comes up on weekends and we go shopping. This statement can be compared with Jim ’s below. Although he suggests that he had bad reactions from several more distant family members when first diagnosed, the relationship he (and his partner) currendy have with his parents appears to be very positive. When asked if he had seen them more or less since diagnosis he replied: Oh, I've seen 'em more. They d o n ’ t change much, we've probably seen 'em more in the last eight to ten years. It's one way fo r us to get out on a Sunday. Even where an individual does not see them frequently, family members may still act as confidants. Scott admits he does not visit his parents often, even though they live nearby. but they have remained a valuable source of emotional support; 123 After I took the test, I waited about a good year before I could tell them, and I've been nothing but surprised about how supportive they 've been. In fact, if I don't call them every few days, my mom will call me ju st to say hello. There \v a lot o f support. However, the positive nature of these relationships contrast markedly with the experiences of Ron and Jeff. Ron explained that he has always suffered tremendously through his family because he didn’t fit in. and that the HIV diagnosis has done little to improve the situation. Fortunately, he is able to name members of the Buddhist organization he beltings to as a source of support that has more than replaced his family: For the most part, my significant others, the members o f my fam ily, have been the members o f this organization. I have my own fam ily, but they have to educate themselves, I can't force them. Collectively, members of the group have been vital sources of emotional support, helping Ron to overcome the shock of diagnosis. His involvement with the group has also given him a busy calendar of social activities, providing an ongoing opportunity for interaction with other people dealing with HIV/AIDS. Originally from Tulsa, Oklahoma, Jeff was disowned by his father and brother when they discovered he was gay, and in terms of the relationship he has with his family, is som ething of a worst-case scenario among respondents. Although his m other still converses with him on the phone, he is sure that she will always side with his father against him should the need arise. The HIV-diagnosis has made him doubly sure that he will be unable to return to them in Oklahoma: I know that my fam ily doesn ’t want me back. It would be very humiliating fo r them because nobody even knows I ’ m gay, let alone with this condition. In addition to the emotional strain that this realization places upon Jeff, there are other 124 specific instances where contact with his family has had a distinctly negative psychological impact, as the conversation he had with his mother shortly after diagnosis suggests: My mom was very cruel to me on the plum e when I first told her, cos she tokl me, she said "well you better start saving money to pay fo r your funeral. " In instances like this, social networks become dysfunctional. The actions of J e ffs parents have weakened his psychological reserve. At the same time, they have also damaged his material standing since he is certain that news of diagnosis is the only reason that he has been disinherited from his grandm other’s will. Yet despite the negative reaction from his immediate family, J e ffs aunt, who lives in Orange County, represents one of his major sources of support. She recently helped him to move apartments, offers to take him out in the car, and invites him over to her house on occasion. She is one of the few people who help to make J e ffs life bearable: / d o n 't know what the hell I would have done without her to he honest. She's a really strong person. She doesn ’ t take anything o ff anybody, and that '.v one o f the reasons why I fe e l safe. All I have to do is pick up the phone, and she would be here. In general then, for interviewees, families tended to play a less significant role in day-to- day life than close friends. This does not imply however, that their impact on individuals was negligible. As the examples illustrate, even when contacts are infrequent or the distances between family members great, the ability to tell one’s kin about diagnosis, and the type of reaction that one expects and/or receives in response appear to have significant bearing upon quality of life. 125 Overall, this study indicates that the informal social network as a whole is a crucial influence on the individual’s post-diagnosis world. Where friends’ and fam ily’s reactions arc supportive, they undoubtedly help to bolster the individual’s physical, psychological, and material well-being. At the same time, they help to maintain access to a variety of different resources, and so preserve the integrity of the individual’s daily path. Where the reaction is negative, or where people have felt unable or unwilling to reveal news of diagnosis, the reverse is often true. Unfavorable responses (whether experienced or feared) were reported most frequently from families. However, this did not automatically imply loss of support because it was often the case that homosexuality had already estranged the individual from his family. When rejection was encountered from immediate friends, particularly from partners, the net loss may be far greater. Armando recounted a story that concerned a Latino member of his support group: He got three years with a lover, and I don 7 know why, but it looks like he fo o l around with another guy, and he got HIV. His lover had a really bad attitude about people with AIDS, he don 7 like it at all. When this guy tell him that h e ‘ s HIV, this guy hit him so bad, he throw him from the house. He had to go to M exico because this guy was so mad with him. In conclusion, it is important to emphasize that one cannot equate the number of social ties an individual has with the level of social support he is able to access. Not all ties are positive, and continued contact with those people who are unable to deal with the illness may bring little other than emotional and material misfortune. 126 CHAPTER 6 Living with HIV and AIDS: Service Agencies As well as the informal support available from friends and family, the formal assistance provided by service agencies also plays an important role in the day-to-day lives of individuals with HIV/AIDS. Yet the relationship that an individual has with the various helping agencies is complex, and at times arduous. Establishing and maintaining access to an adequate range of financial, medical, and other resources requires substantial physical and emotional energy on the part of the individual. Ron captures the full-time nature of self-maintenance that is required when living with HIV/AIDS when he says: During the daytime, whether it's going to the doctor's, whether it's going to the therapist’ s, or the h erb o b g ist’ s, that’ s my job. From the time I g et up, and leave this room, that's my jo b from 9 until 6. I ’m out taking care o f my life. Among the service agencies utilized by respondents, three specific groups can be identified: medical, welfare, and other agencies/services. Each of these is considered below. It is important to mention that none of the interviewees are currently employed in any kind of full-time capacity; as a result, the most commonly held form of medical insurance is M edi-Cal, and only one person had private insurance. The state-funded medical program has many shortfalls, including an inability or unwillingness to pay for some of the trial drugs which might be important in slowing the progression of H IV.1 Juan recalls that an attempt to transfer from AZT to a mixture of experimental anti-viral 1 In California, fourteen drugs are currently available through the State AIDS Drug Program for people with low-incomes. However, twelve new drugs should be added to this list from April of this year (source: Bulletin o f Experimental Treatment for AIDS, March 1994). 127 and cell-regenerant medicines was particularly problematic, because several of the drugs were intended originally as treatment for leukaemia, and hence were not covered by Medi-Cal for people with HIV/AIDS. Scott spoke of similar problems, but dismissed the shortcomings, saying that Medi-cal was infinitely better than the absence of health insurance that had characterized much of his working life as a self-employed caterer. Many people shared this sentiment, and were for the most part uncritical of the state- funded health system, despite the fact that many were able to cite instances where it had provided a less-than-optimum level of care. 6.1 Medical services Medical services represent a vital influence upon the lives of people with HIV/AIDS. But significant variations were discovered in three areas: the doctor-patient relationship; quality of care received during hospitalization; and impact of medication, i. Doctor-patient relationship The relationship between patient and doctor is important in several different ways. In some instances, a closeness exists which allows the doctor to function as a friend, listening and advising on a number of issues, not all of them medical. Good advice of this nature may be at least partly responsible for facilitating a coming to terms with the illness. It may also provide a person with improved knowledge about, and access to. experimental medications and a host of other resources. At the most basic level, the doctor’s willingness to devote time and effort to an individual can do much to help the person maintain a positive attitude towards life. Armando, talking about the doctor that he sees regularly at the AIDS Healthcare Foundation (AHF), had this to say: 1 2 8 She treats me so good. That 's the way it should he, because you go to the doctor because you need help. The way I like to see my doctor, my doctor is m y friend because you can fe e l comfortable, you can come in and tell him "oh, I got this problem ." I f I was with another doctor, I c a n ’t talk to him, because he don't listen. This type of relationship was described by several people. Jim also was very enthusiastic about his doctor: I have a great doctor, ...my mother asked recently, she said "you really like him , d o n ’t you?" t guess I was ju st talking about something, and I started to nod my head, ...H e’ s a great guy. Not surprisingly, the opportunity to be listened to rather than talked at, and to be treated with dignity despite one’s worsening physical, and sometimes mental, health are of great value. For the person with HIV/AIDS, this may be doubly true given the stigma that surrounds the illness. Not all participants were so fortunate. Several of the interviewees had experienced problems when dealing with their doctor. Ron spoke of a situation that was ongoing at the time of the interview. When he began receiving care at Kaiser Permanente, he had hoped to be assigned a doctor that would understand his Buddhist faith, and help him to establish a regime of care that avoided heavy anti viral medications like AZT and ddl. Instead: what I got was this jerk that wanted to tell me that h e ’ s been in the business fo r fifty years, and you ’ re gonna do this, and you 're gonna do that. I let him talk, and then I told him "If you want to prescribe A Z T and d d l," I said "you take itf" This is my body, and I ’ve been there, done that, and I'm not going that route anymore. So what happened was that I told him that I wctsn ‘t going to do it [and] they told me they weren 't going to give me the service I needed. Fortunately, this experience does not appear to have any lasting im pact on Ron, and he 129 is determined to fight with the organization until he gets what he needs. However, unpleasant encounters have deterred others from returning for further consultation. One implication of this is that an absence of medical consultation makes it harder for individuals to comprehend what is happening to them, and negates potential benefits (medical or otherwise) that may be available. Juan was not one of those affected, but he captures the importance of maintaining contact with a doctor: I was concerned about some discoloration, but in fa ct it was ju st me getting older, but y'know, if you 're not a trained person, you think every bump or sore, "Is this the end?" Although he had received excellent care from a gay doctor in Orange county, Jeff had to switch to a new doctor in Beverly Hills when he moved to Los Angeles. He describes his first meeting with the new doctor: [One| thin/i / noticed about him is that he wouldn't touch me, he never touched me the whole time he was doinff the examination. He sat on the other side o f the room and asked me questions. His idea o f an examination wav asking me questions. This incident coupled with a consternation involving the doctor’s assistant made Jeff unwilling to return. As a result, he does not have a current estimate of his T-cells, has refused to take any medicines, and seems to possess only a limited understanding of the changes that both his body and mind are going through. Mongo appeared to be in a sim ilar situation, although his lack of regular contact with a doctor may have more to do with his denial of the illness than with poor treatment. W hilst regular meetings with a doctor are beneficial in a number of ways, at a spatial level, appointments demand that individuals be in certain places at specific times of the day. This imposes coupling constraints on a person’s movement. Scott is currently 130 seeing three doctors, as well as a dermatologist and a chiropractor on a regular basis; this means that some weeks can be characterized as "just going from appointment to appointment". W hilst the medical care he receives is undoubtedly beneficial, the scheduling of appointments significantly reduces the amount of spare time he has for other activities during the week. Armando provides a second illustration. Concerns about his physical health cause him to limit the extent of his daily path. Yet at times, the desire to do so must be balanced, somewhat ironically, against the cost of losing access to a medical service. As he explains: I f it's raining, I d o n ’ t go out. Like yesterday, I spent all day here, I go to the doctor in the morning. I almost cancel it cos it's raining outside and you have to get out from a warm place, hut then I say go, because if I cancel the appointment I have to wait much longer. ii. Hospital experience Experiences varied significantly among those people who had spent time in hospital. Several people spoke of poor conditions and/or treatment they had encountered within the county hospital system. Ron recalled how doctors had informed him when they had first discovered he was positive following a routine operation in 1991: I was still in the hospital, still coming out o f anaesthesia, and the doctors came to me, and the first thing they told me was that one o f the interns had cut herself. That’ s when they told me. There were other guys in the room, it w a sn ’ t done privately, y'know, they told me that I was H IV positive. A clear distinction was often made between the treatment received within Five-P-Twenty One, the county’s AIDS clinic, and that obtained at other generic hospital settings. Many respondents who had visited the former spoke of the high quality of care they had received, and the compassionate attitude of the staff. However, several people reported 1 3 1 a variety of neglect and indifference from the latter, including Armando who had been involved in a protest to hospital administrators concerning the treatm ent of patients referred from the clinic to other wards within the hospital2: [At] the county clinic, 5-P-21, they treat you really Rood, they working with AID S so they know what we need. The problem is when you change to the hospital; those people, they d o n ’t care, they don't want to deal with people that have AIDS. I f you really quiet or you really sick and you want help, fo rg et it? You got problems. Distinctions were also made between the quality of care obtained within the County system, and from other organizations like AIDS Healthcare Foundation. Com plaints frequently centered around the attitudes of staff within the county system, and their reluctance to provide patients with the care that they required. Because of his involvement in caring for so many of his friends during their stays in hospital, Armando provides some of the most illustrative commentary: Maybe the floor have one good nurse, but have twenty really bad. About three months ago, I go into the hospital, [my friend) got like a stroke, he paralyzed, he can't see. I go there and he starts vomiting; this guy is fu ll o f vomit, all down the bed, and there \v three nurses sat talking, talking, talking! The doctors, the nurses, they not care because they know that you going to die. W hy does such neglect occur? Are we to assume that such instances of neglect are collectively a function of a poorly funded and inadequate health care system alone? Or are they a negative reaction to HIV and AIDS specifically? Given the large number of studies that have reported on the high levels of anxiety among health care workers dealing with people with HIV and AIDS (see chapter 2), one might expect respondents to have 1 At the time of writing, the clinic is scheduled to be moved to a larger facility on the hospital's campus with a provision for more beds. This may reduce the pressure to transfer patients to other wards, but still fails to deal with the small number of beds that are currently assigned to people with HIV/AIDS. 132 sensed a degree of ostracism, whether intentional or not. Certainly, Jeff’s feelings about his doctor would support this notion. Harry offers another example concerning an earlier hospital stay: They put this big sign up on your door saying "Take precautions because o f blah, blah, blah, blood, this that and the other." Then you see people coming in, in all these gloves and masks; it's like they're going out on the space shuttle or something. It's a disturbing feeling that you get treated differently. However, aside from these two instances, others were not forthcoming. Harry later contrasts the above experience with the excellent care that he received during his last stay in hospital. The relative lack of discrimination reported by the men may be because many methods of avoidance are subtle and, hence, not always discemable from standard medical procedures. Yet several people suggested that they thought attitudes had improved significantly over the last decade as the medical profession’s understanding of the illness had expanded. Juan suggested that: It's been a learning experience fo r my doctor, and h e ’ s taken on more people that are HIV, and put them on the same aggressive program that I ’m on. In general, respondents were more concerned about the indifference, neglect and the lack of facilities to cope with people with HIV and AIDS, than individual instances of discrimination and prejudice. iii. Medication M edication is a major influence on quality of life for people with HIV/AIDS. The epidemic has created a multi-billion dollar industry focused on the discovery of a vaccine to curtail or eradicate the virus, and upon ways to tackle the myriad symptoms associated with diminished immunity. As a result, there has been an exponential growth in the 133 number of medicines available to people diagnosed with HIV (see Appendix II). Advances in the medical response since the beginning of the last decade have been responsible for improving the life-expectancy of many people living with HIV/AIDS. Increasing success with prophylactics designed to prevent the onset of opportunistic infections, more effective treatment regimes for many symptoms, and the appearance of several new anti-viral medications (ddl, ddC, and D4T) to supplem ent AZT have done much to increase survival rates. As Craig suggests; Originally AID S was three years, and then you were gonna die. Now it '.v up to ten or twelve with the use o f A Z T and ddl, ...and there's the drugs fo r pneumonia. That was kind o f the killer originally, so there’ s a lot o f things that are extending. However, these advances have come at a cost. Many medicines appear to have a greater impact upon day-to-day life than the illness itself. Virtually everyone remarked on the problems that they and others had experienced when using the reverse transcriptase inhibitor. Zidovudine, better known as AZT.1 Side-effects range from feelings of nausea, inability to sleep, neurotic behavior, and loss of sensory perception, to more serious problems like the high levels of toxicity produced in the blood and bone marrow of the user, and Myopathy, a disease that causes severe pain and inflammation in the individual’s thigh and shoulder muscles. Such side-effects have consequences for both the quality and spatial extent of participant’s lives. Juan explains the difficulties he encountered attempting to drive to his doctor’s office whilst on AZT: 5 AZT is in fact a thymidine (or genetic building-block) analog that prevents the replication of HIV. It is currently the only FDA-approved drug for the initial treatment of HIV, despite the huge literature documenting its side-effects. 134 A t the com er o f Sunset and Rodeo, I sat through three red lights, ju st staring at the lights, the traffic around me ju st seem ed to he a big blur. I said "now. I've got to concentrate/" The light would turn green, and I would look to the left and to the right, and the next thing I know, the light would change to am ber and red. "Oh! I missed it, I ’ve really got to concentrate." A lady behind me got out o f her car, came over and knocked on the window. She said "you had better go home, you d o n 't look w ell," Although Juan’s physical health was essentially sound at that time, the medication was directly responsible for his inability to navigate what would otherwise have been a fairly straightforward daily path. A second illustration concerns the Myopathy that has troubled Jim in recent months. He alternates AZT with another virus inhibitor (ddC) on a biweekly basis, and it seems likely that his muscle problems have been brought on by this. Again, the impact of a medicine designed to slow the development of HIV rather than the illness itself is largely responsible for the decline in mobility. A final example comes from Jeff. Although he had taken AZT only briefly following diagnosis, he had a very strong opinion concerning its impact on both him and his ex-lover. I've taken A Z T and the side-effects were ju st too much fo r me to deal with. It was very bad. I ended up staying up all night, getting very nervous, being very hyper. M y ex-lover used to take A Z T continuously, and he would be neurotic, he was a total mess, wired to the max. It was really doing something to his mind. In addition to AZT, interviewees mentioned a variety of other medications that had impacted their lives. Scott had recently been prescribed an antibiotic to counteract a parasite that he had picked up w hilst in Mexico. Although he said that the antibiotic was helping to rid him of the parasite, the medication itself was causing a significant reduction in his energy level; so much so, that he was considering postponing the treatm ent in order to take up an offer o f part-time catering work. 135 Chemotherapy also limits activity levels. Craig has been undergoing chemotherapy to treat Kaposi’s Sarcoma, and the statement below provides some indication of the extent to which his life has been disrupted by this treatment: The chemotherapy is probably the thing that's affected me the most, cos the regular chemotherapy was at least a week o f feeling not up to regular energy levels, second week, maybe o.k., third week almost there. Since the treatment was repeated every three weeks, there was little or no opportunity for Craig to recover fully before the next dose. The feelings of nausea and fatigue commonly associated with chemotherapy were constant companions, limiting his ability to function on a daily basis. More recently, his participation in an experimental program using a new form of drug4 has reduced the impact of chemotherapy, but this improvement has also come at a cost to his health (see below). People’s experiences with medication, especially during the early months following diagnosis, are crucial in determining their long-term faith in medical care, and, in turn, their willingness to use available medications. Among respondents, there exists a clear distinction between those who continue to follow "doctor’s orders", and those who prefer a variety of alternative strategies. As well as a detailed knowledge of the changes that are going on within their own bodies due to HIV and AIDS, members of the faithful group display an understanding of the effects that any one of a spectrum of medications are likely to have upon them, and an unusually advanced awareness of HIV/AIDS-related developments occurring within 4 Recently, a new type of chemotherapeutic has emerged. These use liposomes (fat cells) to surround the active agent so that the latter’s impact is more concentrated and side-effects (such as hair loss, nausea, etc) are less severe. It is still very much at the experimental stage. 136 medical science. W ithin the group, Craig more than anyone else has consciously applied his understanding of the medical response by seeking out those experimental treatment programs most relevant to him. He uses bulletins such as the those published by Being Alive and APLA to discover where and when the latest research programs will be conducted. The advantages of such a strategy for him appear to be twofold: first, he is able to locate himself near the forefront of medical research so that he is likely to benefit early on from any developments that occur; second, he feels that he receives better care and more attention within these programs than he would within the County system: The research was better because they gave you more direct contact, and the nurses were more attentive and they knew you, whereas with the county, yo u 'd %et a different nurse every time, and you didn ’ / always have the same doctor. So it was better fo r me, better fo r them. Despite the advantages that Craig perceives, there are costs involved. The current experim ental drug that he receives for K.S. does cause significantly fewer side-effects than regular chemotherapeutics, but in order to fulfil the requirements for the program he was forced to wait a month and a half without any treatment, during which time: [The K.S.] spread pretty fast; it went up into my sinuses and so on. 1 cou ld n ’ t breath, / had to sleep sitting up, it was physically very hard, but there was protocol and all that. Even though the wait caused him so much discomfort, Craig is able to accept this experience because he believes it is a short-term loss for a more substantial gain in his health over the longer-term. Others such as Scott and Juan are also using experimental drugs and display a sim ilar faith in medical research. Scott has recently begun a new anti-viral treatment using a photo-chemical manufactured by the Kodak com pany (called DNCB). The 137 chemical is painted onto a different part of the body each week, causing a skin reaction, in turn inducing the body’s immune system to activate. Whilst unclear about exactly what lasting impact the chemical will have on the user’s skin, Scott said that test results indicated that it had shown some promise in slowing the proliferation of the HIV virus, so is content to continue using it. Scott, like Craig, makes a conscious effort to stay current with what is available on the medical scene. He is also involved in a trial of Peptide T as a treatment for short-term memory loss. Among non-believers, attitudes about medication are far more cynical. Both Jeff and Armando believe that people with HIV/AIDS are often treated as guinea pigs, and that the search for a vaccine and other medicines to tackle opportunistic infections is motivated more by financial rewards than any humanitarian concern. In J e ffs case, his conviction is strong enough to support a belief that the financial remuneration for dealing with an ongoing epidemic of this size are sufficient to make its eradication bad for business: I really think it \s because o f the money. / really think that it \v more profitable fo r it to exist than not to exist, / really do. Follow the money and you '1 1 fin d out. Beliefs of this nature coupled with one or more bad experiences with medication appear sufficient to direct some men away from conventional treatment to a variety of alternatives. For Jeff, this alternative has been a belief in the power of spiritual healing. He supports his choice through a conviction that many doctors base their decisions on intuition, which is an essentially spiritual process. His com m ent against medication alm ost exactly contradicts Craig: 138 / don't take heavy drugs ...because I d o n ’ t know what th e y ’ re gonna do to my body. They m ight help me now, but what about a month from now; they may really make me worse than I already am. Ron has also decided to avoid mainstream medication. His Buddhist faith has given him a powerful conviction that he, and he alone, is capable of reversing the flow of the illness. Aside from spiritual beliefs, several respondents have focused their attention on alternative medicines. Harry makes every effort to avoid medication, preferring to rely on natural remedies that include vitamins, and a variety of other substances that he describes collectively as his "own personal therapy". His therapy also extends to include the use of IV narcotics, something that has increased in recent months. The narcotics obviously have no physical benefit for Harry, but at a psychological level they may help him to deal with the changes that his body is going through as a result of illness. M ongo also uses a mixture of IV drugs and alcohol. He represents something of an extreme because this frequent self-medication allows him to deny any of the implications of being HIV-positive. When interviewed, he was clearly under the influence, and later admitted that he had been awake for two days because of drug use. The physical impact of AIDS seems unimportant to Mongo when drug use enables him to state with conviction: I d o n ’ t believe that I can die o f AIDS. I'm gonna die a natural death, or an accident maybe. I'm gonna live to be probably a hundred, two hundred, and if I d o n ’ t, I w on’t know about it". Drugs and alcohol represent an alternative strategy allowing people to deal with HIV and AIDS. Like spiritual healing and natural remedies, they appear to have replaced, for some at least, the position of conventional medicines. 139 The implications of these various responses are significant. Even though controversy continues to rage over the precise impact of many drugs, there can be little doubt that the volume and type of medication will affect an individual’s physical health on both a short- and longer-term basis. Beliefs about a medical solution will also influence a person’s attitude towards the future and condition their psychological state. The use of medication also has clear spatial and temporal dimensions. Taking or not taking medication can influence a person’s ability to travel through space, and the activities that can be undertaken within that space. It can also make social interaction increasingly problematic, particularly if the medication induces fatigue, drowsiness, or hyperactivity. Thirdly, the presence or absence of medication will dictate to some extent the changes that occur across the "corporeal landscape", i.e. the illness/medication balance will influence the magnitude and type of change impacting an individual's body; this in turn will sway the person’s ability to preserve the aesthetic integrity and functional capacity of the physical self. Temporally, medication is also significant. The extent to which an individual is prepared to visit the doctor, follow medical advice, and make use of a variety of prescribed drugs will have an enormous impact upon his life. However, with the immuno-suppression that characterizes HIV, the range of opportunistic infections manifest in people with HIV/ AIDS as a result, and the enormous taxonomy of drugs developed to counter them, it is difficult to gauge precisely what that impact will be. Although the 140 medical response to HIV has improved substantially since the "early days,”' some drugs continue to exact a painful toll from individuals, and hence remain major influences in their everyday lives. 6.2 Welfare services For m ost respondents, Financial considerations are of great import following diagnosis. Since all were recruited from APLA’s Necessities of Life Program which requires of its clients a monthly income below seven hundred dollars,'1 this is perhaps not surprising. Everyone regarded money as a constraint upon the quality and extent of life following diagnosis, with leisure activities and other "non-essentials” the first to disappear when budgets became tight. Although welfare benefits were roughly the same for each of the participants, in some cases, these funds were supplemented from one of several other sources. There are three issues which require consideration in this section: first, the question of access to welfare benefits; second, the extent to which welfare income covered the cost of living, and the problems encountered when it didn’t; and third, the ways in which different individuals were able to supplement their income, i. Access to benefits A majority of respondents suggested that access to welfare benefits had not proved excessively problematic. Several had received assistance to expedite the application * For example, when AZT was first used in anti-viral trials, the doses were often so large that the levels of toxicity in people’s bodies frequently killed them long before the virus. Martin Majchrowicz (1994), head of the treatment education program at APLA, suggests that despite significant improvements, the memory of (and rumors about) these incidents may be a strong factor in deterring people from entering current treatment programs. ‘ This is not an arbitrary figure set by APLA. It is the figure recommended by Federal guidelines, below which the individual is considered to be in poverty. 141 procedure, either from a non-profit agency, or (in one case) from a local doctor. In turn, response from the welfare system was, for the most part, prompt.7 Juan provides a rather cynical explanation for the ease with which he was able to obtain benefits: The government saw me as someone that was totally useless. That's not true at all, but in the governm ent’ s wisdom, that's how they saw me. "This o n e ’ s sick, h e ’ s probably gonna die anyway, so le t’ s give him his money and not question him. ” O f those people who had experienced problems, Harry stated that his application for welfare immediately after diagnosis had been refused, and that he had only become eligible because of a more recent dual diagnosis of HIV and depression. Mongo claimed that the money he received from the state was a result of his alcoholism rather than his HIV diagnosis,1 K and that it had taken several years before he had finally started to receive assistance on a regular basis. It took Scott approximately six months to obtain access to welfare benefits. He claimed that it was a very difficult process, not only because the application procedure was problematic, but also because at the time, he was suffering from pneumonia: A t the height o f my pulm onary problem s I had to go and stand in line fo r five hours, and I d o n ’t really know how I made it ...because / was really sick. They told me that I had to be there. I ’ m sure they would have postponed it, but it was right before I was finally going to get approved, so 1 had to show up. 1 This term is used in a relative sense, since many of the welfare programs have application periods that last for 2-3 months minimum. Fortunately, Supplemental Security Income (SSI) has a "presumptive eligibility" clause which means that an individual can receive up to 6 months of SSI during the time their application is being processed. * Although this may be true, it may also be another attempt by Mongo to distance himself from the HIV virus, and all things related to it. For him, welfare received for alcoholism may seem far more "acceptable" than getting it for the gay plague. 142 As in Arm ando’s experience with the doctor, this visit had implications for Scott’s physical health. W hat would otherwise have been simply a time-consuming procedure is made much more arduous by the presence of illness, ii. Welfare income For the most part, interviewees receive between six and seven hundred dollars a month from one of two sources. The first of these is Social Security Disability (SSD), a federally controlled retirement fund brought forward because of the person’s disability. The second is Supplemental Security Income (SSI), a financial assistance program for people who are both disabled and in extreme financial need. Variations are relatively rare: Jim does not receive SSI because his resources totalled more than the two thousand dollar limit: and Juan said that whilst his applications for SSD were pending he had received General Relief (GR) and food stamps from the L.A. County authorities. Receiving welfare, however, was no guarantee that an individual would be able to maintain an acceptable standard of living. A majority of people interviewed said that getting by on a day-to-day basis was extremely problematic. W hen asked about the sufficiency of his income. Armando replied: It's not enough! This month I received only 623 dollars, and my hills and all that stuff, 595 dollars, so you d o n ’t have that much to do anything. You got to hold this money and pay this hill, and wait fo r the last chance to pay this other hill. Several people expressed sim ilar concerns, including Jeff who has been sleeping on a foam camping mattress because he was unable to afford a bed. Being forced to live on cramped budgets has had a detrimental effect upon the men. Uncertainty about the ability to pay rent or utilities every month, poor diet, lack of leisure activities and resources. 143 little or no access to transportation, and poor housing conditions are among additional concerns that compound physical and psychological tolls exacted from people dealing with HIV/AIDS. Ironically, for many interviewees, a reliance on welfare, however inadequate, was the last thing that they wanted. I have already mentioned people’s reluctance to become dependent on others (chapter 4); it is clear that a similar reluctance existed about welfare. Many expressed a keen interest in returning to work, even if only on a part-time basis. However, they also commented that even though they felt physically capable of working, they simply could not afford to lose the benefits which they currently received. Juan is particularly keen to return to work as a travel agent, but acknowledges that this move would entail losing Medi cal eligibility: Even in this bad economy I could go out and get a jo b , the problem is that I wouhl lose literally every benefit. I fe e l g reat right now |but] what happens if I have a horrible relapse ? How do / pay fo r the hospital? How do / pay fo r the medications ? You see, it ’ .v all or nothing. W hilst em ploym ent was often unfeasible, other ways in which additional financial assistance could be achieved were of paramount importance. iii. Additional income Several strategies used to generate extra income were identified in chapter 4. Section 8 Housing is also an important source of in-kind income. Four respondents have been awarded Section 8 housing certificates, and they were significantly better off as a result. All had obtained their certificates through the HOPW A (Housing Opportunities 144 for People W ith AIDS) system.^ In C raig’s case, since rents are limited to no more than thirty percent of a tenant’s income, and he receives an additional eighty dollar allowance for utilities, he is currently paying only ninety seven dollars a month for an apartm ent that would normally rent for eight hundred dollars. Similarly, Scott calculated that, overall, he was only paying about around twenty percent of his total rent costs each month. For Mongo, even though he does not really like the neighborhood he currently lives in, the offer of a section 8 certificate was also too good to miss. 6.3 Voluntary and non-profit agencies A variety of other service agencies are also of great importance to people with HIV/AIDS. All respondents use the food bank at APLA, as well as several other services therein. Many also made use of at least one of other agency. These services are vital sources of financial aid, in-kind income, and direct services, as well as important places where friends and acquaintances can be met. i. Available resources Several respondents have been able to obtain additional money from the AID for AIDS agency that provides cash grants to assist people with rent and utility burdens. Applications for money can be made every other month, providing a vital addition to the monthly budget. In addition to money, agencies also represent major sources of in-kind income. One of the most important of these is undoubtedly A PLA ’s Necessities O f Life Program (NOLP) which provides its clients with free groceries and other household items * Ron and Craig obtained certificates from APLA, which receives a limited number of certificates, and then distributes to clients using a lottery system. Scott received his from the All Saints AIDS Center in Pasadena. Mongo did not specify how his was obtained. 145 on a weekly basis. The significance of the NOLP program is captured by comments from several of the interviewees: Believe me, the fo o d help. Maybe I go to the store and buy some soda or some juice, but my refrigerator is fu ll o f fo o d from APLA.. I don 7 have nothing here unless it is from APLA. (Armando) I f it wasn 7 fo r the fo o d bank I would've had to work when 1 was going to school. The fo o d bank made it possible fo r me to concentrate on my schoolwork anti / know they've ju st been a tremendous help. (Harry) I'm very thankful fo r NOLP because I don 7 know what I w ould’ve done, I really don 7. / mean because between the rent and talking on the phone; I talk on the phone a lot. (Jeff) In addition to groceries, APLA also distributes donated clothing, used books, and a selection of free tickets to local theaters and other events-* items that are increasingly difficult to obtain on a limited budget. Although all respondents have regular access to these sources of in-kind income, several are making use of additional resources. Jim is able to obtain a free supply of vitamins from AID For AIDS, although several others were unaware that this service existed. Craig too said that he has been able to meet most of his material needs to date through the service agencies: I ’ll talk to my case-manager and say "do you know o f o r I ’ll ju st call the [APLA] client-line. It might take a few phone-calls, but I can fin d out what I need to know. These experiences contrast markedly with those of others who have a limited knowledge o f available services, an issue that receives further consideration below. As well as monetary and in-kind income, agencies also provide a wide range of services to clients. These include "Buddy" programs, psychological counselling, informal group discussions and social gatherings, legal advice, art workshops, benefit counselling. 146 treatment education, transportation, dentistry, home help, and hospital visitation. Between them, the men benefit from many of these services: Mongo finds the dentist at APLA very useful; Jim has regular visits from a home health nurse and her care assistant; Harry enjoys the time he spends at the APLA art workshop; and Craig, among others, attends "Being Alive" social gatherings on a regular basis. Juan’s indicates the importance of the benefit counselling he received after diagnosis: APLA has been a life-saver, number one because o f (heir counselling service to get through that maze o f government. I was bewildered and to have somebody that knows the ropes available. I can't begin to tell you how thankful I was. Among respondents, variations in the number of services used and frequency of use were considerable. APLA is the only agency that Mongo frequents. O f the myriad services available there he uses only the food bank (weekly) and the dentist (on occasion). In contrast Craig has used at least four of the services that APLA provides, regularly visits Being Alive, and has received several grants from Aid For AIDS. Jim also commonly visits of four or five different agencies including APLA, Minority AIDS Project. Being Alive, and Partners.1 0 Only one respondent makes use of a service that does not focus specifically on HIV/AIDS. Scott regularly attends discussions and lectures at the Center for Living, a group that provides support to any individual dealing with a life-threatening illness. The center is operated by the founder of the "Course on Miracles," something that Scott has been a follower of since it helped him to overcome his alcoholism several years ago. He 1 8 Partners is a relatively new day-carc center. It is unique in that it provides care for both seniors and people with AIDS. The center is located in a converted office building in West Hollywood, and functions as both clinic and recreation center (see Ellingwood in Los Angeles Times, 25 October, 1993, pp. Bl, B8). 147 says it operates: by basically changing your perception o f events, which facilitates what you would call a miracle. How you look at something, i f you can change the way you look at it it's basically a miracle because suddenly it's no longer a problem. ii. Agencies as places An additional service performed by many of the agencies is the provision of a locale for interaction with others. At one level, such a locale may be the formal creation of an agency; for example, the regular social gatherings organized by Being Alive that several of the interviewees attend, or the recreational space provided by Partners. Within these environments, people have the opportunity to interact with others facing similar problems. New friends can be made, troubles discussed, and information exchanged. At another level, locales for interaction can be generated as positive externalities of other programs. The best example of this is the waiting area provided for clients of the Necessities O f Life food bank. Often, during the early afternoon, there will be forty to fifty people in the waiting area, and the whole room is thick with conversation1 1 . Jeff provides an indication of the importance of this locale: I love going to A P IA , not ju st to pick up my groceries, but to get out and talk to some people, to meet some people, and listen to what other people are saying; just get out, y'know. Places like NOLP also give individuals an opportunity to interact with staff and with 1 1 Recently, the Necessities O f Life Program introduced a "quick service" that allows people to request a standardized list of pre-bagged groceries. Often this means that the client can leave in fifteen minutes rather than having to wait for anywhere between 1-2 hours if the program is busy. Despite this, the service has received minimal usage. I believe that this is due, at least in part, to the fact that people value the social atmosphere at NOLP. It may also be partly due to the fact that people like to vary their weekly grocery items, something that they cannot really do with the quick service. 148 volunteers. Staff members may have useful information about other services available through the agency, application procedures, and so on. They may also be rich sources of gossip! Several of the respondents were also volunteering, or had previously volunteered at one of the non-profit agencies. As well as providing additional insight into the spectrum of resources and assistance available to them, the work often allowed for interaction with a wide range of people. In addition, volunteer work made valuable use of people’s time, allowed clients to reciprocate the help that they themselves had received, and offered a sense of responsibility that they may have lost if they had been forced to give up work following diagnosis. For Jim, volunteering was the catalyst that ended the withdrawal that he had experienced following diagnosis. He explained his feelings about volunteering as follows: / like the camaraderie o f working with fellow clients; you get the vibes from them, that’ s what I got when / was working down there, and it fe lt great. It fe lt great to help somebody, or you were working with them, I really enjoyed that. The shared experiences and feelings of belonging generated whilst working within the service agencies are of great value, helping to eclipse the illness as the primary focus of daily life. Ron, who had volunteered at Shanti, an agency providing a range of supportive services, spoke similarly of the benefits he had received: I volunteered fo r a whole year, and that really helped me because what it does is it takes your mind o ff yourself. There are people out there who are suffering more so than you, so I been able to network and meet a lot o f interesting people through the agencies. More recently Ron has been involved not only in volunteering, but in organizing and running an HIV/AIDS support group within his Buddhist organization. Armando also 149 helps to coordinate a support group for gay Latino men with HIV/AIDS, based in Eagle Rock. These activities provide a sense of achievement and an opportunity to use time constructively. However, at times they may also tax the person’s mental and physical health. Armando was sometimes emotionally drained and physically tired by the pressure that the organization places upon him, yet he still found it difficult to reduce his involvement: Sometimes I don't wanna do this anymore! I d o n ’t wanna hear about anybody sick again, ...but then / think that these people sick, and they need help, and nobody going to give it, and that’ s it. Now I involved so much, I know a lot o f things about AIDS, people ask me questions, people phone me, everybody call me because / know what's going on. iii. Variations in service use It should be clear from this discussion that each respondent uses the available services differently. People like Craig and Jim possess a great deal of information about availability of services, and make every effort to use those which offer appropriate support. Others, such as Mongo, make minimal demands of the agencies, despite the fact that they are eligible for assistance. Clearly, unless potential clients are aware of, and willing to use an agency, valuable resources will remain unused. Variations in service use are produced by a variety of different causes. I have been able to identify three. In an immediate way, variations in physical and psychological strength will obviously influence a person’s ability and willingness to make use of available services. Harry is currently recovering from PCP pneumonia, and both the physical and psychological impacts of the illness have significantly diminished his daily path. This, in turn, has affected his service use because he finds it difficult to reach APLA, and 1 5 0 considers several other agencies too far afield. Juan, commenting on life immediately following diagnosis, suggests that the psychological strain of diagnosis: ...was overwhelming fo r a long time, and how / chose to deal with it was by staying in fam iliar surroundings, and looking back on it, that's exactly the time I should have been in counselling. In other words, the withdrawal and isolation characteristic of life shortly after diagnosis prevented Juan from using services (e.g. counselling) that may otherwise have been available to him. At another level, the personal characteristics of each individual determine the nature of the relationship they have with service agencies. C raig’s explains his frequent use of providers when he says: I try to use the organizations rather than a friend, / would rather borrow from an organization than from friend or family. I f there are organizations that are set up to help, then th a t’ s what they’re there for. Such an attitude does not vary, even though his physical and psychological ability to draw on an agency’s resources might. In the same way, explaining why Harry was one of the few interviewees not attending the Being Alive social events is made easier when he says "Oh well, I ’m not a very social person." Finally, M ongo’s minimal use of agencies, may be partly explained by his reluctance to be associated with the gay community. Service agencies themselves directly influence the level of client-service interaction. An agency’s size, its location, the regulations it imposes, the image that it creates for itself, and the effort it makes to disseminate information about available resources and services to potential clients will have a dramatic influence on the quantity and quality of client-provider interaction. Given A PLA ’s high profile, its multi-million 151 dollar budget, its large client base,1 2 and the fact that it is capable of offering free food, it is not surprising that many people are aware of its existence. When asked how he heard about APLA, Craig replied: I guess .../ do n 't know where / heard about [APLA], but i t ’ s been around long enough, and its pretty big. For other agencies operating on sm aller budgets, diffusion of information about their services may be harder to achieve, and it is often up to individual clients to discover the full range of services for themselves. An important question, and one which I am unable to fully answer at the present time, concerns the interaction of different agencies. I have already commented on the relevance of client interaction and the client-agency relationship, but it is also clear that a given agency represents a pool of potential client for other organizations. Particularly for an organization with widespread influence (such as APLA), its willingness to endorse another agency and subsequently refer clients will have a substantial impact upon the latter's operation. iv. Criticism? Respondents had very few complaints about the non-profit agencies they utilized. In general, people were very grateful for the assistance they received and were appreciative of the compassion and understanding that greeted them at many of the agencies. O f the concerns that did arise, one of the central themes was the shift of 1 2 APLA currently has somewhere in excess of four thousand clients, about a third of which are eligible for the Necessities O f Life Program. A person must be symptomatic to register as a client, however asymptomatic people are able to make use of several of the programs that the agency offers. To give some idea of how this figure compares to the total, L.A. County Department of Health Services reported in late 1993 a total of 21,522 AIDS cases diagnosed since 1981, and a total of 14,014 deaths in the same period. 152 emphasis away from client interests to operational issues. The first example of this comes from Jim ’s experience as a volunteer at APLA, and focuses on his view that political wrangling between departments had garnered sufficient strength to diminish the agency’s effectiveness. He states: APLA has such potential but they grew too fast. Each person has their own department, so they play the game o f kiss-ass to make sure they d on't get dumped out. Nobody knew what the other departments was doing, and they didn't care, wasn't their department, wasn't their work. A second concern was voiced by Craig. He suggested that funds received by APLA from donors, corporations, and government grants were not always used to benefit clients as fully as they might have been, and was therefore concerned that the organization’s own self-maintenance had become its primary task and major expense: I think the main problem is that there \v so much stu ff and so much money goes to ju st running it so that the trickle down to clients is ...I've heard that the administration is making fifty to sixty thousand. That's a hefty salary fo r a supposedly non-profit organization. A related issue was raised by Scott, who said that he sometimes felt "lost in the system" at APLA. Consequently, when he had an urgent matter to take care of, he would call his case-m anager at the AIDS center in Pasadena instead. Arm ando’s concern stems from his experience at an agency in East Los Angeles, but the issue he raises has broader significance. W hen he felt that agency staff were not making sufficient effort to help him, Armando says: I got mad ... "you guys have a jo b because I have AIDS! I f nobody got AIDS, you not be working here." I know that is not nice, but it is the truth. These people have a jo b because I have AID S so I get mad when I go some place and they treat you bad 'cos you want some information, you ask questions. An organization created to deal with HIV/AIDS must be seen to fulfil its mission to assist 153 people coping with the illness, yet the cause of clients’ discom fort is, at the same time, the very reason for the organization’s existence. For Armando and other clients, such a situation makes improper treatment or poor service, even if only minor, very difficult to accept. A second theme extends beyond the non-profit sector to include all services that people make use of following diagnosis. Ron’s concern, which stems at least in part from his Buddhist faith, is that he is obliged to surrender his own autonomy to service staff and professionals in order to obtain assistance. For him, this loss of empowerment has two implications: first, that clients are pressured into accepting certain beliefs about HIV/AIDS and its treatment; and second, that this manipulation is detrimental to their health because, in fact, no-one knows the feelings and needs of people with the illness better than themselves: I'm not going to let anybody else use me. I'm not gonna let the government use me, the organizations use me ...This is my disease. I ’ ve gone to Positive Living, I've been to support groups within APLA, but what's happening is people have given their empowerment up; they’re married to H IV and AIDS, and I'm not. Despite these caveats, the importance of the non-profit sector should not be underestimated. Given the current inadequacies of the state medical and welfare systems, organizations like APLA play a crucial role in sustaining people materially on a day-to- day basis. At the same time, the services and resource environments that agencies provide bolster both the individual’s psychological and physical reserves. This chapter has also shown how service providers play a very significant role in defining people’s worlds following diagnosis, to such an extent that service location was an important consideration in housing choice. Craig, who recently relocated to Hollywood, suggested: 154 I do need to stay close to where there are services; when / was moving there was a place that was in Burbank that was pretty good, except fo r the location; it was fa r away from the hospital, from APLA, from my doctor, and all the services. Similarly, Scott, who lived in M ount W ashington, said that occasionally he felt somewhat isolated from the gay community in W est Hollywood, but: I guess it's a trade-off because I do have easier access to Pasadena, to Glendale, to just about anywhere, and I ’ m close to the USC-County facility i f I need to go there, it's only five minutes from here. I have a lot o f access here. 1 5 5 CHAPTER 7 Living with HIV and AIDS: The Community Within the context of this thesis, the term "community" has three applications, each of which is important, all of which arc inextricably linked. The first refers to community as a group sharing a common ethnic or racial origin. Since race and ethnicity have already been considered in chapter IV, they will not be discussed here again, save to underscore the fact that they are clearly significant influences on the reaction that people diagnosed with HIV can expect to experience. The second application refers to community as a group sharing a common sexual orientation. Although this topic was touched on in chapter 5, the wealth of (sometimes contradictory) information that surfaced about the "gay community" makes further consideration worthwhile. Finally, the term is used to suggest a group of people who possess a common identification through an association with a particular place. It is this use of the term that is most frequently associated with discussions about community attitudes and resources, because it suggests a particular location within which such attitudes and resources are manifest. Community in this sense becomes synonymous with a geographical neighborhood. Those people who live in the respondent’s immediate vicinity may not be gay, or of the same ethnic/racial origin, but their reactions have important consequences for the individual, and often for the level of resources available within the community. O f course, the meanings that we attach to the term "community" do not partition so conveniently in real life. Groups that share an affinity through race, sexual orientation or place all possess a spatial form. As a result, spatially delimited neighborhoods are almost invariably characterized by a particular mix of people, be they rich or poor, black, 156 brown or white, gay or straight. Such a situation is itself problematic. W here an overlap of peoples and place occurs, observers may be prompted to interpret the "community" by using a single label, negating the manifold variations that exist within. More significantly, it is foolish to assume that within a single community of people all members will hold similar attitudes, and react to stimuli in like fashion. The temptation to ignore variations may be strong, but even among the small group of people who participated in this study, the difficulties involved in attempting to speak about "people with HIV/AIDS" or about "the gay community" becomes apparent. This chapter seeks to illustrate the different feelings expressed by respondents about how the gay community and the community at large have reacted to them, and to the HIV/AIDS epidemic in general. 7.1 The Gay Community and Sexuality To speak of a gay community in anything other than the most general of terms is to invite criticism for failing to address the diversity of its constituent populations. Yet respondents were often prepared to give their personal interpretations of that community. Some believed that it was possible to see gay people as a single community that had rallied to cope with HIV/AIDS. Jim had this to say about the number of organizations that had been created to assist people. / think we take pride in the gay community in how we built something, how the community got together. If it wasn 7 fo r the gay community, there wouldn 7 be any AID S agencies. I think the gay community should be commended fo r the way they came together, L.A., San Francisco, New York, ...they came out to help. A similar type of optimism was evinced by Juan concerning the reaction of the W est Hollywood gay community. He was convinced that all members of that community were both aware of HIV/AIDS and sympathetic towards those people who had been diagnosed. 157 However, whilst such sentiments are undoubtedly valid, they do not represent a com plete picture of the gay community. Several respondents suggested that the illness had created a rift within the community. Craig believes that a large number of gay men understand the nature of HIV/AIDS and are generally sympathetic to those with the illness. At the same time, however, he feels that a significant minority, specifically those who are interested primarily in physical appearance, make a conscious effort to avoid not only the issue but also those individuals touched by it. / think there's a whole section that kinda wanna ignore it ... "unhealthy, / d o n ’ t wanna look," ...and I was kinda that wav too, so I understand the avoidance o f someone w ho’ s really sick. This outlook has had an immediate impact on C raig’s world. He no longer feels comfortable going out to gay bars given their emphasis on "looking good" because of his K aposi’s Sarcoma: I never went out to gay bars that much, but now / d o n ’ t go at all. They’re very physically oriented, if y o u ’re the perfect person th ey’re okay, ...well, I d o n ’t feel like the perfect person anymore, at least not outwardly. For Armando, the nature of the rift generated by the illness is of a greater magnitude. He believes that the gay community has been effectively divided by AIDS:1 I t ’ s two groups, the gay community is separated into two groups. Before, we were separated straight and gay. Now we got straight, gay and HIV, th a t’ s how it is. You got three groups, and we the bad group. Although this statement stands as a direct contradiction of Jim ’s belief that the illness has 1 Armando was the only person to qualify his statement about the "gay community." He believed the rift to be characteristic of the community as a whole, but admitted that his knowledge about the impact of the illness was far greater for Latino gays than for others. This qualifier also provides an example of the overlap that occurs between different "communities” (this time: sexual orientation and race/ethnicity), and the problems created when attempting to generalize about members’ experience. 158 had a unifying influence, in reality these opinions simply hold true for different sections of the gay community. As Jim suggested, a great many people (gay and straight) have worked tirelessly over the last decade to provide services and assistance to people with HIV/AIDS. At the same time, there are many documented examples where exactly the reverse has occurred. Actions of unkindness, ostracism and discrimination occur within the gay community, whether they are consciously motivated or not. Opinions concerning the community as a whole were frequently colored by respondents personal experiences of living with HIV/AIDS, and the reactions they and their friends had encountered. A spectrum of experience can be identified. At one extreme, Juan and Jim claimed that they experienced little or no adverse reaction from other gay men. When asked, Juan stated emphatically: "Never, never, I've never once had a bad time, ...not one negative thing." A mid-point on the spectrum is represented by Harry, who had difficulty remembering any adverse reaction from other gay men, but after consideration suggested that: Y ’ know, if anything, I ’ve encountered slight ignorance. That's about as bad as it’s got. When I ’m out with somebody, if they say something that's negative about a person with HIV or AIDS, I say "hey, you feel like that? Well I have it" (so] it’ s given me a chance to educate some people that I ’ve been close to. For Harry, the belief that he has been able to assist others in overcoming their fears of the illness is important. In many ways, his experience seems more typical than Juan’s, given the feelings of fear and uncertainty that many of the interviewees themselves felt after diagnosis. Harry’s experience also contrasts markedly with the other extreme of the spectrum. For individuals like Armando and Jeff, ostracism and prejudice have become facts of life 1 5 9 with HIV/AIDS. Significantly, both men indicated that the adverse reaction they had encountered had arisen primarily from their efforts to meet other gay men, indicating another disadvantage of being without a long-term relationship. Armando had tried to set up a date with a guy he had met in a nightclub, but ran into problems when the conversation turned to HIV: / say "Ok, I ’m H IV positive" and you can see his face, he changed. I say "Maybe we can see each other another day?" ..."Oh yeah, sure, no problem " [but) he never called me. I saw him another day ...and he act like he d o n ’t know me. These examples suggest that the gay community, like any other, consists of a wide range of individuals brought together around a single distinguishing feature. But being gay does not necessarily determine a person’s political views, religious beliefs, or tolerance of difference and disease. Although awareness of HIV/AIDS is undoubtedly high among gay men, this fact alone cannot be used to imply a universal tolerance, anymore than it can suggest that all heterosexuals are less accepting than homosexuals. The type of reaction an individual with HIV/AIDS experiences from other gay men is clearly a significant influence upon daily life. From interviewees’ accounts, a particularly problematic dimension of this experience is the search for a partner. Unless signs of the illness are clearly visible, or the person chooses to inform others of his status. HIV/AIDS may not play a primary role during the course of routine social interaction. However, intimate relationships are made far more difficult by the presence of HIV/AIDS. The higher stakes perceived by some potential partners (both in terms of emotional costs and physical risks) may be responsible for the negative reactions and avoidance mentioned above. 160 The difficulties involved in finding a significant other following diagnosis further illustrates the importance of having an established partner (cf. chapter 5). One aspect of the relationship which has not yet been considered is the level of sexual activity. It seems reasonable to assume that sexual desire will form part of a person’s life following diagnosis, despite popular perceptions to the contrary . W here it does, the absence of a regular partner may make it hard to fulfil those desires. Ron’s situation reveals how this may represent yet another constraint on post-diagnosis life: / do not want to hurt anybody ...but / still want to live, I still want to have sex because / am a sexual being, a sexual person, I have those desires. A t first, I war denying it, y 'know I was dying inside, I was up here masturbating and watching movies and all that stuff, and / thought "Oh god, 1 can't do this." Ron has since been able to come to terms with the situation. He has attended safe sex education classes for people with HIV/AIDS at APLA, and has started dating again. W hen rejection does occur, a troubling consequence may an increasing unwillingness to tell prospective partners about one's HIV status. Although he expresses no desire to harm anyone, the growing emotional and physical deficits of being single have made Armando think twice about discussing the illness before he has sex: Now, I have sex, and after that I tell them, y 'know what I mean ? Sometimes you like the person and you d o n ’t wanna tell them because [you] d o n ’t know his reaction. This is really hard because ...I feel like a liar. I understand now why people d o n ’t want to know. Your life's changed when you know you ’re HIV. Under such circumstances, whilst fear and discrimination continue to surround the illness, efforts to control transmission of HIV may remain only partially successful. Armando was the only gay man to suggest that he had concealed his HIV status from a partner. Others, such as leff and Ron, explained that although they feared rejection and had on 161 occasion experienced it, they would not have sex with someone without first revealing their HIV-positive status. Finally, it would be foolish to assume that people seek to date only HIV-negative individuals. Among respondents, Jeff expressed a desire to begin a relationship with another HIV-positive man. The advantages and disadvantages of such a relationship may be similar to those identified for positive friendships of any kind. However, additional benefits may include the ability to engage in regular sexual activity without fear of further transmission. Among heterosexual people with HIV/AIDS, the same may hold true. Mongo, the only heterosexual man in this study, when asked about how his life had changed since diagnosis, said that he was much more cautious about who he dealt with sexually because: Y'know, 1 don't want to spread this disease, [but] most o f the women that I mess with, they probably have it already. This quote also suggests that Mongo may be using the assumption that his sexual partners are already HIV-positive as a justification for not revealing news of his own diagnosis. 7.2 Community as Place All respondents were aware that opinions of homosexuality and HIV/AIDS varied significantly across the country as a whole, both through space and time. In spatial terms, several felt that public opinion was more accepting within urban rather than rural communities. Juan, who was characteristically optimistic about the public’s attitudes in general, suggested that adverse reaction occurs: only in isolated communities away from the urban centers, where people think that i f you come within two feet o f them you can get it by breathing the same air. 162 Jeff also believed that attitudes toward homosexuality were likely to be more tolerant within large cities like New York, Los Angeles, and San Francisco. As well as the urban/rural distinction, Harry, Jeff and Jim also remarked on regional differences. All believed that support was likely to be more forthcoming on the W est coast than in the central states of the U.S. Jim in particular was adamant that even though public attitudes had improved in general, the changes had occurred only: on the corners o f the U.S. o f coursef Not in Oklahoma, not in Kansas, [but) on the fringes. It takes a while to get into the rest o f the country. More specifically, Scott suggested that he felt fortunate to be living with HIV/AIDS in Los Angeles rather than elsewhere because: T here’ s so much support here, ...we need to go further, but I'm grateful that there's so much assistance, the consciousness around is much more positive here than it is in other places. As well as statements about community attitudes, several people made related remarks concerning variations in available community resources. Jeff explained why he chose not to move back to Oklahoma when his cousin offered him a place to stay: M y cousin wanted me to move back, but he said "I don't blame you fo r staying there," because back there, where I ’ m from , they don't have the help or the services that they have out here. Y ’know there is no APLA where I ’m from . In temporal terms also, there was unanimous agreement that the general public had become significantly more aware about HIV and AIDS during the last decade, and more sympathetic to those living with the illness as a result. However, the majority also felt that the impetus for this change had come not from an increased tolerance towards the homosexual community, but rather because HIV and AIDS were appearing with increasing frequency among the heterosexual population. As Craig stated succinctly: 163 Young teenage girls are the highest risk group now. I t ’ s harder to see a teenage girl become sick than it is "oh, it ’ s a gay person, we d o n ’t have to worry about h im ." Despite the relatively high level of consensus about these spatial and temporal variations in community attitudes at the national level, individuals’ views about their own home communities varied significantly. To some extent, such variations may be explained by the fact that respondents came from a total of five different communities within the Los Angeles region. When he was asked about the com m unity's awareness of HIV/AIDS, Juan, one of two who came from W est Hollywood, ventured: There’ s not one person you could come across in the West Hollywood area that is not aware o f it. / don't think that I have ever met anyone that has not known some-one that was either ill with it, was positive, or had died, and / mean everyone. Such a statement is perhaps unsurprising given that some thirty to forty percent of the population of West Hollywood is gay, and the city is one of the most visible centers of gay life in the country. Juan’s experience contrasts with those of Jeff and Mongo who lived in the Miracle Mile and Hollywood locales respectively. When asked about their com m unities’ reactions to HIV/AIDS, both said that they were unsure. However, neither was overly optimistic about the level of sympathy he could expect, and consequently, both made efforts to keep news of diagnosis to themselves. This type of d o n ’t ask, d o n 't tell approach is illustrated by Jeff: / don't know ...See my neighbors don't know, and I would prefer to keep it that way. / haven’ t really m et that many people [and] I haven’t really talked to anyone about it. / don't go out and tell people, not on a friendship level . However, the fact that respondents lived in different communities is not, in itself, sufficient to explain their different assessments of people’s reaction to HIV/AIDS. Harry, 164 who lives on the border between Hollywood and Silverlake sums up his feelings about the community: Silverlake is a largely gay community, and they're very much aware, they're aware. I associate m yself a lot with the Silverlake community, I have a lot o f friends there. His view of the locale, whilst optimistic, contrasts with Arm ando’s conviction that Silverlake cannot really be characterized as a gay community at all: I t ’ s like every neighborhood o f Los Angeles, i t ’ s got everybody here. You got cholos and you got gay people, you got a real mix, y'know. Like these people down there, [gestures down the hill] they don't wanna talk to gay people, they're Latino and they hate gay people. They cross in fro n t o f you and you say "hi," they d o n ’t say "hi." Both views are, of course, colored by personal experience. As a gay Latino, Arm ando’s life experiences may differ markedly from Harry’s experience as an African-American, and these distinctions will undoubtedly be reflected in their perceptions of the community. An interviewee’s relationship with his community is thus strongly influenced by his everyday encounters therein, and it is to those that I now turn. At the level of everyday experience, many respondents had difficulty recalling any instances of adverse reaction from the immediate community. Several admitted that they had encountered what they termed "ignorance" or "narrow mindedness" in the past, but were reluctant to elaborate. One of the few instances of negative reaction was reported by Jeff, and focused on a lunch-date he had with a friend who was suffering from Kaposi’s Sarcoma: The closest I ’ve come to experiencing bad feeling [was when] we went to lunch one day, and I remember people kinda looking at him and looking at him, and kinda whispering. I was about to really go o ff on some people. 165 Despite some evasiveness, incidents of this nature appear to have been relatively rare. In fact, several respondents were keen to offer rebuttals to the idea that this type of insensitivity still took place. Juan stated: It's not like y o u ’re a leper. There have been times when I ’ve been at the supermarket, and you can tell; the sunken eyes and the wasting syndrome, maybe they've got ju s t enough energy to get a carton o f milk, but i t ’ s not like people are stepping away. I haven 7 seen that. The clerks don 7 say "please put the money down" and then pick it up with a piece o f paper, nothing like that . In general, the majority of people denied that their lives had been impacted by adverse community reaction. Most of them said that they did not avoid specific locations within the community for fear of prejudice or ostracism, instead citing financial limitations and a lack of physical stamina as the primary constraints on mobility. Jim stated: / don 7 think so, I don 7 go maybe because o f money, but because o f HIV? No, I don 7 think so. I shy away from certain places, I wouldn 7 go to a Policeman '.v Ball unless it was a gay one, ha, ha, ha! Yet whether they were willing to admit it or not, concerns about the stigma surrounding HIV/AIDS appear to have been of sufficient magnitude to warrant continued attempts to conceal health status. These concerns have impacted individuals’ daily lives; Jeff spoke of an experience he had whilst waiting for the bus: I w at waiting fo r the bus to stop, I reached fo r the metal pole that you hold onto and I missed. This girl saw me, and I thought to m yself "she knows" and that's scary to me. I don 7 know how I would react if I wav out in public and people could tell, because one o f the defenses that I do have is that people cannot tell. This quote is of particular importance because it focuses attention on the question of visibility. For Jeff, the fact that HIV has yet to become visible is of vital significance because it allows him to maintain an outward identity that is not linked with the stigma of the illness. A similar sentiment can be identified in Harry’s statement that: 166 A lot o f the time when I ’ m out and about, people don't look at me like I ’m gay or whatever. Y'know they d o n ’ t know what the hell I am so they can 7 categorize me. I don 7 get the judgm ent you get when somebody puts you in a box. In both cases, the trepidation involved in dealing with others on a daily basis is significantly reduced by the fact that their bodies have yet to betray the presence of the virus. W hen physical signs become discernible on the surface of the body, individual behavior changes because the presence of the illness can no longer be concealed. I suggested in chapter 4 that both functional and aesthetic change at the level of the individual body may place constraints on both interpersonal and social environments. Functional deterioration constrains movement simply because the body cannot perform in the way that it once did; an aesthetic deterioration of the corporeal form may induce a sim ilar contraction of the daily path. In the preceding section, Craig’s experience with Kaposi’s Sarcoma was briefly mentioned. The purple-grey skin discoloration produced by the illness has come to represent a visible reminder of his AIDS status. He cites it as his biggest concern at present, and it has prevented him from leaving the apartment. On the one hand, he is reluctant to meet gay people because he believes that the majority of them will be immediately aware of his status. On the other, he is fearful of meeting people who do not understand what K.S. is because he finds it hard to cope with the strange looks he has received: "I had some person ask me "Were you in a car accident?" I didn 7 bother to explain. Anxiety about potential reactions may be a surprisingly powerful constraint. Craig was the only interviewee who had clearly visible symptoms at the time of the study, so it is difficult to generalize. Yet, Jeff and Harry’s statem ents above, and M ongo’s fear of 167 visible symptoms also lend support to this notion. To some extent, we are all conditioned to regard certain bodies as beautiful, healthy, and hence desirable, whilst rejecting others as ugly, diseased, or misshapen. For the people in this study, the pressures are no different, except that the internalization of these norms implies that when their own bodies begin to deteriorate, they are particularly aware of the growing non-conformity. Jeff remarked: "/ used to have such a beautiful body, but now it's gone." in this way, institutionalized norms may have a significant impact on people without an explicitly negative reaction from community or individual. O f course, as time passes, some people with HIV/AIDS come to terms with aesthetic deterioration and more generally with the illness. If and when they do, they are effectively challenging their own and others’ preconceptions about the limits of acceptable appearance, and as a result, often become increasingly less concerned about what other people think. When asked whether people had reacted badly to the news of his diagnosis, Jim replied: I f so I don 7 pay no notice to them. They can all fu ck themselves, that ’ s not my problem, they can take care o f their own houses. I ’ve told them that before, maybe I ’ll have to do it again soon. The suggestion that Jim is no longer prepared to let the attitudes of others affect him is an important one. If the psychological impact of the illness diminishes over time, community response may become less of a limitation on individuals’ lives. To conclude, it is necessary to offer one caution. For the most part, respondents suggested that discrimination and ostracism were not sentiments they had encountered from the surrounding community. W hilst this is encouraging, 1 am reluctant to accept the 168 absence entirely because it may have been partly a product of the m en’s reluctance to relate incidents to me. During the course of interviews, several respondents seemed evasive when asked about negative experiences, and it is therefore problematic to conclude that the social symptoms of the illness do not continue to exist. 169 CHAPTER 8 Living with HIV and AIDS: H ie Broader Context So far in this analysis I have looked at four factors that constitute the immediate environm ent of persons with HIV/AIDS; these are the persons themselves; their informal social networks; the taxonomy of available service providers; and the communities in which they live. However, these factors do not exist within a vacuum, but rather within a larger socio-spatial context. I suggested in chapter 3 that it was possible to identify several specific elem ents of the broader social context which were important for this analysis. These include the prevailing political philosophy, economic climate, cultural traditions, media responses, and the legal framework. Whilst it is tempting to view these dimensions as uni-directional influences on the everyday lives of individuals, it must be remembered that they exist as components of a complex dialectic that relates individual action to a preexisting context through a variety of institutional apparatus. Hence, the people and place that constitute a particular locale exist as products of a socio-spatial process, but at the same time, they are also actively engaged in that process. Consequently they possess a varying ability to mold the broader contextual scene that surrounds them. In this chapter, I examine the way people have been personally affected by these broader contextual factors, but it is important to note that these factors are themselves subject to change. A second point concerns the difficulties involved in exploring the influence of contextual factors through ethnographic interviews. By their very nature, contextual factors are rarely visible at the level of the individual, and as a result, they are not always readily identifiable by the individuals themselves or by observers. Yet despite their 170 limited knowledge, individuals' interpretations are nevertheless valuable, since the absence o f information raises as many questions as its presence. If respondents are unaware of the influence that, say, government policies have had on them, it is im portant to understand why this should be so, and what implications this unawareness holds. The relative lack of response concerning the influence of the broader social context experienced in this study may also be in part a product of the interview format used. Questions relating specifically to contextual influences came at the conclusion of the interviews, by which time, most people were more interested in concluding the discussion than giving thought to government policies, cultural contexts and the like. This may have produced responses that were designed to appease the interviewer rather than provide an accurate articulation of the person's awareness. In any event, only three factors were commonly mentioned as pertinent factors in the social context: the role of the government; the influence of the media; and the importance of cultural setting. Questions relating to the roles of legal and planning frameworks were dropped after the early interviews because they generated little or no response. 8.1 Government response The governm ent’s role in mediating the impact of HIV/AIDS generated the most response overall from the men. Respondents were often critical of the state’s role generally, and this criticism stemmed primarily from the belief that the government had little interest in the well-being of the gay community. Jim expressed his feelings: I don't believe there war any concern by the two previous presidents. They didn't wanna hear about whether somebody died, as long as it didn't list on their records, it didn't tarnish their history books, they didn ’/ care. It w ar a disgusting thought to them I guess, and they ju st turned their backs. 171 Similarly, Juan suggests that the negligence displayed by the government during the last decade occurred because: They fe lt that the people that were getting ill were not that significant in terms o f their staying in power. R on’s belief in the Buddhist faith colors his view of life in general, as we saw earlier from his critique of the service agencies. Ron portrayed the Government response to HIV/AIDS primarily as a powerful drain on his and other’s empowerment. By allowing the government to define the parameters of their illness, individuals are "being program m ed by all the negativity ...in the environment." Several interviewees did mention a growing optimism brought about by the advent of the Clinton administration. However, they also realized that the increased attention given to the HIV/AIDS epidemic in recent years has also been because of the changing demographics of the impacted population. A couple of points were raised by respondents concerning the impact of government policy at the level of the everyday. M ost ventured that they would appreciate an increase in level of welfare assistance they received, but this suggestion was also accompanied by the hope that a change in regulations would allow individuals to earn the extra income without the loss of existing benefits. As Juan suggests: I f I go ahead and take a full-tim e job, ...what happens if I have a horrible relapse, how do I pay fo r the hospital? How do I pay fo r the medications ? Even in this bad economy, / could get a job. The problem is that / would lose every benefit. Aside from a widespread concern with the welfare system, few other examples of how government actions impacted people’s lives were identified. As I suggested above, this relative lack of response may be explained partly by the fact that interviewees simply did 172 not see political decision-making as an important influence on their experience with HIV/AIDS. None of the men mentioned the im pact of local government, even though the City of West Hollywood has been highly supportive of attempts to assist people with HIV/AIDS. 8.2 Media response There was a general consensus among respondents that despite a somewhat shoddy beginning, the media has become increasingly sensitive to the difficulties faced by people with HIV/AIDS over the last decade. Craig sums up many people’s feelings: [It’s] changed fo r the better. I think the m edia’ s helped, newscasters are more aware o f w hat’ s going on, more compassionate, more concerned, and not treating it as a disease that "those people" deserve. Three of the men believed that individuals within the film and television industry had done much to raise the public’s awareness of the illness. Both Jeff and Craig, for example, praised Elizabeth Taylor and Barbra Streisand because they felt that these "stars'' had succeeded in reducing the level of stigma that surrounded AIDS at a time when the government had remained silent. Jeff states: / thank G od fo r Elizabeth Taylor. I never really liked her, but I think she really did a lot to change people's attitudes. She kinda made it fashionable ...She did a hell o f a lot to help gay people, and not ju st gay people, but anyone with AIDS. In addition, Harry was optimistic about the educational capacity of television to reduce anxiety about HIV/AIDS. He said that he had recently seen a children’s cartoon which dealt with the issue and believed that: When they p u t this stu ff in children’s cartoons, attitudes are obviously changing. To me they're approaching it right. Kids need to know about it these days cos th a t’ s the kind o f world that it is. 173 8.3 Cultural setting Although they were not questioned specifically on this topic, several respondents related instances where the cultural setting had been important. The majority of these instances centered around race/ethnicity or religion. For instance, Armando’s account of his experience with HIV/AIDS differed markedly from others on several occasions, often in reference to the attitudes of the community towards HIV, and towards illness more generally. The fact that he is Latino undoubtedly plays an important part in coloring this experience, and has in turn made him much less optimistic about the status of people with HIV/AIDS. When asked what had been the biggest change in his life since diagnosis, he replied: You feel like you got a mark, you feel like you got a number (makes action of marking his lower arm], / mean, you fe el like you not the same, you different. People keep running from you, and you only say "I ’ m HIV." That’ s it, reality simple. Religion appears to have affected people in two ways. First, Craig and Jeff felt that religious beliefs have made both homosexuality and HIV/AIDS largely unacceptable in their fam ilies’ eyes. This fact has seriously strained the relationship that each man has with his family, exacting both emotional and material tolls. A second and more positive impact of religion comes from Ron. Among interviewees, Ron’s Buddhism has provided him with an unique perspective on HIV. His belief that he has the ability within him to reverse the progression of the illness has served thus far as a vital psychological boost. At the same time, Buddhism has also helped him to view death in a far less threatening light. During the interview he explained: 174 I ’ m preparing m yself fo r my next life. / decide when it's time fo r me to go, and I decide when, and where, and who I wanna come back as, ...because we d o n ’t grieve over death, life is eternal, I keep going, / come back. Although some of the other men suggested that they had come to terms with their own mortality, the belief that his death represents only a transition to another life may have made the task less arduous for Ron. 175 CHAPTER 9 Living with HIV and AIDS: A Stage Model How then do we begin to understand the experience of a person living with HIV/AIDS? In the preceding chapters I have attempted to identify a variety of factors that impact the daily world of individuals following diagnosis. These factors range from the relative physical and psychological strengths of the individual to the role of the government. Yet despite these efforts, the analysis still lacks an explicit appreciation of the temporal dimension of life with HIV/AIDS. Life changes are substantial, but exactly when it changes for each individual is an issue that remain unresolved. In this final chapter of analysis, I present a stage model that will illustrate the relative changes in the individual’s world through both time and space. The primary foci of the chapter are the physical and psychological challenges produced by HIV/AIDS, and the way in which these challenges shape the lived space of the individual. Where possible, an effort is made to identify those factors that influence both the rate and relative magnitude of this change. In conclusion, the stage model is combined with the framework developed in chapters 3-8 (see Fig 3.1) in an attempt to generate a realistic interpretation of life following diagnosis. 9.1 A Stage Model The precise nature of life following diagnosis is determined by variety of factors peculiar to the individual and the surrounding. Yet, in many ways, a remarkable similarity marked respondents’ experience with HIV/AIDS. The strength of these similarities is such that it is possible to conceptualize life after a diagnosis as a series of loosely defined stages that occur both through time and space. The vertical axis in Fig 176 9.1 indicates the spatial extent of the person’s world, with the mid-point representing a pre-diagnosis norm. The horizontal axis indicates the time since diagnosis. From diagnosis onwards, the person passes through a series of stages entitled shock, cocoon, emergence, relapse and recovery.1 The rationale for the names of these stages will become clearer as I explore each category separately. During each stage, the individual is faced with a series of distinct challenges. The challenges may relate to health, but they may also be psychological or social in nature. Each stage is characterized by a different configuration of these challenges, and hence each produces a very particular impact upon an individual's daily world. Since HIV/AIDS affects everyone differently, the days, weeks and months elapsed since diagnosis will not necessarily indicate a person’s current health status. Instead, a relative time-scale is used, tailored to individual experience. Three different conceptions of space are employed here: social, interpersonal and personal. The first represents a measure of the individual’s daily path; the second refers to the space through which interaction with others occurs; and the third denotes the immediate space of the body (both in functional and aesthetic terms). As we now know, the diagnosis and developm ent of HIV/AIDS is likely to have a significant impact upon all three. 9.2 Pre-diagnosis The first stage occurs prior to diagnosis itself. This period of time is important for two reasons. First, the nature of life before HIV provides some understanding of the 1 Within the context of this chapter, I am dealing only with the individual’s experience within a community setting. I do not include the permanent hospitalization that may follow if the individual’s health deteriorates. Fig 9.1 Stages of life following an H IV diagnosis EXFANDED WORLD D IA G N O SIS I STA G ES OF C O P IN G 1 .P re-diagnosis 2 .Shock 3 .C ocoon 4 .E m ergence 5 .R elapse 6. Recovery \ 2 / \J Pre-diagnosis norm T I M E D I M I N I S H E D ................................... .... ..................................... . + WORLD Note:Primed numbers (i.e. 5’, 6") indicate repeated stages of Relapse and Recovery 178 preconditions that influence the individual’s ability to deal with the appearance of HIV. Here, for example, we may include the quality of an individual’s social network; their psychological state; the presence or absence of a confidant; whether they are employed; their age; and whether they are familiar with people who have (died of) AIDS. Several brief exam ples illustrate how past experience has conditioned respondents’ ability to deal with the shock of diagnosis. Ron had been badly injured in a car accident several years before the onset of HIV; it was this incident which prompted his first encounter with Buddhism: I was able to realize that at that time, I had no mission. It really helped me to look inside o f me, and help me to understand the causes I have made. So when I moved back here and found out that I was H IV positive, I knew when I was in the hospital, I was gonna go straight to my [Buddhist| leaders and get guidance. Similarly, Juan had spent time helping a neighbor come to terms with a diagnosis of breast cancer and the mastectomy that followed. This experience helped him when he found out he was HIV positive because "I took some o f that strength she had, and applied it to my own situation." In both these and other cases, the m en’s experience prior to diagnosis worked to shape their reaction to HIV/AIDS. However, the fact that some have overcome earlier traumatic experiences does not imply that they remain untroubled by diagnosis, but it may allow them to pass through the initial ordeal more rapidly than others. A second feature of the pre-diagnosis period concerns the impact that HIV may have on a person before its presence is confirmed. This issue concerns the emotional (and perhaps the physical) impact of not knowing whether one is positive or not. Scott explained that it had been several years before he had finally tested because: 179 / ju st d id n ’t wanna know. In 1987 / had shingles, and then I read somewhere that it was a possible precursor to HIV, and 1 fe lt "Oh God, " but I still didn't want to know. I tried to will m yself to be well, but ultimately in 1990 I did have a really bad flu, and it caused me to have night sweating and that really got my attention. I realized that I had been living in a state o f fea r fo r several years, in the back o f my mind always that fear. The dread of illness took a clear psychological toll upon Scott. It may also have been detrimental physically because the three years (1987-1990) were lived without the potential benefits of medical care. In addition, Scott’s anxiety appears to have had a measurable impact on his daily path. When discussing the relationship he has with his family, he stated: The period o f time prior to testing, I used to spend a lot o f time with them, because / wa.v in that state o f fear. So whenever I had a free day, I would go out and visit, because in the back o f my mind / was thinking about how long I wd.v going to be around or not. Several other people mentioned that they had sensed something was wrong before they had finally tested HIV-positive, suggesting that they may also have experienced similar anxiety. 9.3 Shock The precise magnitude of the shock immediately following diagnosis will vary depending upon the personal characteristics of the individual in question. Not surprisingly the shock was often severe: a fact that is conveyed by Juan when he states: I fe el that I have a good foundation, and that mentally I have a lot to hold onto ...[but] I was tom loose from my moorings, / was ju st floating. This is an horrendous shock that will literally cut you o ff at the ankles. For many of the respondents, diagnosis brought with it an expectation that death was both inevitable and immanent. Ron, who had attended a counselling session at Shanti not long ISO after his diagnosis, reported that the first response of everyone in the group had been that they feared they were going to die. Ron had this to say about his own reaction: Y'know I was not educated, / had no confidence in my life, I was scared to death. / was scared that I was not going to be able to achieve my goals. W hen asked about his immediate response, Craig also suggested that he felt: pretty scared, cos at the-time, they d id n ’t know that much about it, and it was pretty much "Ok, you 're gonna die, " and seeing my lover die was p roof o f that. For those people who possessed a better understanding of the implications of diagnosis, or had no immediate symptoms, it was possible to cushion the blow of diagnosis, but it was significant nonetheless. Even for Harry, who was fairly sure he would test positive, diagnosis was traumatic because he finally had it in writing: "it was certain then, I had to deal with that reality." Regardless of variations in magnitude and timing, diagnosis provides a catalyst to separate the individual from an established pattern of existence. 9.4 Cocoon After the initial period of shock, respondents appear to have entered a third stage which can be best described as a cocoon. In each case, the men began a period of relative isolation and withdrawal, both social and geographical, psychological and physical. In this respect, Juan was typical: There was a big gap in my life from the time I found out in August o f '92 to the spring o f '93. I didn't leave this house unless it was fo r a medical appointment. I didn’t want to see the outside world. I had to work through everything an eighth o f an inch at a time. "Why m e? Why wav this all taken?" This stage also appears to be characterized by a diminishment of interpersonal space as people deliberately severed ties with others. For some, separation from others may be the result of an irrational fear of infecting them. This feeling of contamination was 181 commented on by several of the interviewees, including Harry who ventured: A t first, I did n 't want to be near people because o f [the illness |, y ’ know. I ’ d see a little kid, cos there’ s children in my family, I didn't want to pick up babies so I distanced myself. I ju st fe lt like I shouldn’ t be around people. It really messed with my head. In addition, this period may contain a renegotiation of personal space. If diagnosis is accompanied, or followed immediately, by illness, an individual is forced to deal with functional and possibly aesthetic change in his body. Ron described his condition shortly after diagnosis: / h y j . v stressed out, ...and my weight had dropped down to 125 pounds, the dementia, the diarrhea, the shingles, the neuropathy, the problems with the memory, and my concentration was worse. Even where illness is not a corollary of diagnosis, the latter may still impact personal space. Since the presence of HIV can be interpreted symbolically and medically as a contam ination of the body, one result may be an attempt to distance the mental self from the physical space of the body. The motivation for such an attempt can be seen in this statement from Juan: There are mornings when I wake up, not so much now, but in the earlier days, when I would think "how am I going to get through the day with this terrible thing in my body?" For Scott, separation of mind and body appeared to be a conscious strategy. Asked whether he thought that HIV defined who he was, he explained that: I t ’ s part o f my spiritual belief that we are not our bodies. Sometimes H IV allows you to identify so strongly with our bodies that we forget that, but we are spiritual material occupying a body. You’ re not the body, y o u ’re not the drugs or medicines, you ’ re not the diseases that you come into contact with. Getting out o f your body, so to speak, really helps to keep you healthy. 182 During this third stage, the psychological impact of illness is great. W ithdrawal appeared to represent a method of dealing with the news of diagnosis. Jim suggested that after diagnosis: You isolate yourself, anti you try to reevaluate what you did wrong or where you d o n ’t want to go, or he ostracized, or be stared at. [It’s] a whole mental trip. As we have seen however, withdrawal of this nature is potentially harmful. W ithdrawing into oneself implies foregoing the aid which may otherwise be available from friends, family and counsellors. The significance of the feelings expressed by Jim and Harry above, and by others cannot be underestimated. The fact that life continues after this period of withdrawal does not mean that everyone is able to endure. Specific circum stances that define an individual’s existence may make it particularly difficult to overcome the depth of depression and isolation following diagnosis. Harry admits that during this period he attempted suicide because he had hit rock-bottom. At the same time, he was also dealing with continuing drug abuse, had only a few close friends, and had been rendered largely inactive by dehydration and diarrhea. Jeff, when interviewed, appeared to be in a prolonged period of depression and isolation. The reality of his situation can be summed as follows: It gets very depressing. It feels like y o u ’re standing on a rug, and somebody pulls it out from under you, and you ju st lay there. Even if you do get back up, you know i t ’ s ju st a matter o f time before you're hack down again so eventually, you ju st begin to lay there. Again, J e f fs situation was made considerably worse because he was essentially estranged from his family, had almost no (socially or spatially) proximate friends, and possessed 183 very little knowledge about exactly how the illness was likely to affect him. For others however, the make-up of their personality and daily lives may mean that this period can be traversed more rapidly and less painfully. Ron’s Buddhist faith, for example, gives him the ability to view death as a transition from one life to the next, thus providing an im portant psychological buffer. A common theme of this stage, and one which provides a link to the next is that despite the depression and anger, it is also a time for reflection and thought. Diagnosis, representing the most awful news, appears to be responsible for endowing individuals’ lives with a deeper meaning and a much clearer sense of purpose. In virtually all cases, people identified a change for the better in this respect. Significant similarities existed between the reported experiences. Individuals ventured that they had become better people; that they felt better; that they had realized the importance of friends; and that they knew what they had to do (chapter 4, 18-20). Armando talks about the amount of time he has spent caring for friends; Before I don't worry about people. Now I do the hospital, before I d o n 't do that. Y ’ know, you want something, you have to give first, and then you receive later, and I think maybe I learning that way now. M aybe when I get sick, nobody in the hospital, hut it d o esn ’ t matter, ...I can do it, so I do it. Even Jeff, who appeared to be in the deepest of depression at the time of the interview, had this to say about being diagnosed: I t ’ s kind o f a blessing ...because it's really made me see my fam ily fo r who they are, and not fo r the way that I wish they would be. The apparent contradiction of these sentiments is captured by Harry when he says: I know what I ’ m out here fo r now, ! really do ...it really helped me a lot, i t ’ s ju st a shame that it took (diagnosis) to knock me upside the head. 184 9.5 Emergence The process of reevaluation noted above also forms the beginnings of a fourth stage. I have termed this stage emergence because there appears to be a clearly identifiable point at which withdrawal and reflection are assigned lesser roles, and life assumes new meaning. Often, the presence of a catalyst for this transition is apparent. For Jim. it was volunteering at an agency helping other people with HIV and AIDS: / came down sick first. It takes some time before you finally move beyond that, [but] suddenly y o u ’re coping. I d o n ’t know, it's like a shell broke or something when / went to do volunteer work, ...all this old stu ff fe ll by the wayside. This experience can be placed alongside several others, all suggesting an extremely rapid reversal. HIV/AIDS, by necessity, remains important, and periodically rises to prominence, but the illness is increasingly adopted as an additional, albeit problematic, part of daily life. Harry recalls that it was body-building that enabled him to move beyond the period of withdrawal: / chose that as my own personal therapy, and it was ju st an amazing circle, cos I was building up my body, but / got more out o f body-building mentally. I spent about three or fo u r hours a day in the gym, and that w asn't enough. It helped me think a lot clearer. I was able to put a lot o f things in place. For Ron, the stimulus was his discovery of, and increasing involvement with, a Buddhist HIV support group in Santa Monica. Armando was heavily involved in caring for friends with the illness, and more recently in running his own support group in the Highland ParkI Eagle Rock area. Craig, as we saw earlier, began attending art college following diagnosis (see chapter 4, 19). An important point to make about the transition from stage 3 (withdrawal) to stage 4 (emergence) concerns the time it takes for each individual to make that transition. 185 Although respondents’ descriptions of the changes they had experienced were analogous, exactly when those changes took place appeared to vary considerably. Jim, for example, suggested that his period of isolation had lasted for about three and a half years, but: That ain 't long from what I've heard from others. I don't think it is cos you have to come and deal with something that nobody knew about, and everything else ju st got forgotten about. Other friends, he said, had spent five or six years coming to terms with HIV/AIDS and were still partly dealing with it now: Somebody tells em they 're H IV, they go through the whole process o f mortality, decisions, rejection, fear, loneliness. You run the gamut o f everything, and happily they 're ju st setbacks. You still remember what it was like, and you try to break the habit. It's not that it's easy, you have to ju st do it. Jim ’s estimates are considerably longer than others’. Ron felt it had taken about two years of his life to come to terms with HIV/AIDS. For Juan, it had been closer to a year. Harry’s withdrawal had also been nearer the twelve-month mark. But, Jeff still seemed to be dealing with the fact of diagnosis several years after the initial diagnosis. Regardless of the exact duration of withdrawal, coming to terms with the presence of the illness appears to be concomitant with and responsible for a relative increase in levels of activity, and a "re-inflation" of the space in which individuals exist. For example, there was a very rapid increase in the physical size of Juan’s daily path: I ju st decided I was going to get over m yself I said "I'm not going to die, I ’ve got life left in m e." A nd after that, I was dying to get out. I was at museums, I wav at the supermarket. I didn’ t make a distinction; wherever there were people, I wanted to be. His eagerness to leave the private space of home for more public spaces indicates also a growth in his interpersonal environment. This was more generally true among all those 1S6 who had overcome the initial trauma of diagnosis. Many of the activities people were engaged in (volunteering, attending college, bodybuilding, and so on) involved contact with a variety of different people. At a more personal level, the ability to resolve the psychological trauma of diagnosis suggests that the men arc able to "re-inhabit" the space of the body. As I suggested earlier, withdrawal from the space of the body may be one way of dealing with diagnosis--to escape the locus of contamination. With emergence, individuals appear to possess the strength of mind to reassess the body, not as an object of fear and loathing. but as an essential part of their being; a space that must be re-inhabited and cared for if they are to successfully cope with the illness. Armando stated: [I] changed a lot because now f always think about health really good, y'know, things that when you 're healthy, you don't have to think about. You stop and you start to think about your life, your health, and yourself. This constant emphasis on the power of mind over matter may be a vital elem ent of this strategy since it enables people to deal with a worsening physical condition. As we saw in chapter 4, a positive psychological oudook is the prerequisite for dealing successfully with HIV/AIDS. Despite the relative expansion of people’s life worlds, stage four is not without constraint. In all cases, the impetus to maintain a busy schedule (something that appears to be an integral part of emergence) was tempered to some extent by poor health and/or a lack of available income (cf. chapters 4 and 6). Moreover, it is important to note that the emphasis on psychological recovery during this stage does not imply a complete recovery. An overall improvement in quality of life during the emergence stage may be 187 substantial, but it does not remove the cyclical pattern of highs and lows which overlie daily life. Almost everyone reported definite variations in their psychological well-being on a fairly regular basis. In particular, issues of dependency, instances of negative social reaction, and concerns about the future all induced occasional feelings of depression. As Jim suggested, "everyone has their ups and dawns". Despite these caveats, stage four is about the re-creation of an individual’s daily life. It is about coming to terms with illness, and displacing it from a position of pre eminence in daily life. For many, the end of isolation provides life with a new sense of purpose, something it may have lacked even before diagnosis. Emergence also brings with it also rapid expansion along several dimensions of life-space, allowing not only an increase in the size of individuals’ physical environments, but also a restoration of interpersonal space, and the psychological strength to "re-enter" the space of their bodies. During stage four, worlds are not diminished, but expanded. Although life at this pivotal stage appeared to proceed (for most) in a positive direction, there is some indication that others may have responded in a far less optimistic, and in some cases harmful, manner. Several respondents, including Jeff and Armando, were aware of others who had reacted in this way. Armando emphasized that news of diagnosis has made him far more health-conscious, but: Some people say "Fuck! I got HIV, I going to die anyway, " and they start to do whatever they want. I know guys that start drinking and drugs, party, sex, everything. They think th ey’re gonna die, so they do it. Similarly, Jeff commented that he would like to meet more HIV-positive men for companionship because they were likely to be more understanding and compassionate but: IKK I'm not saying that all people with H IV are gonna he like that, cos I've come across some that are very negative and very cynical, everybody's gonna die, and to hell with everything, and blah, blah, blah. Statements such as these suggest that emergence need not always be constructive. But even where negative reactions occur, people’s environments may still expand in relative terms from the bounded worlds created by shock and withdrawal. Scott was the only respondent who volunteered that he had behaved in a destructive way. Following diagnosis, he had become significantly more sexually active in a paradoxical attempt to displace HIV/AIDS as the primary focus of his daily life: Initially I wav devastated, and then afterward I thought ju st "Oh what the hell, don't worry about the long-term.'' I wav constantly choosing people that I w ouldn't normally even have considered spending time with. Ultimately i t ’ s alm ost as if you're downgrading yourself. You d o n ’t even want to think, almost use sex to block everything else out. 9.6 Relapse W hether the net expansion in daily life achieved in stage four is positive or negative, it cannot be maintained indefinitely. A fifth stage represents what is essentially a step back from the progress made in dealing with HIV/AIDS. I have less evidence for this stage, in part because fewer interviewees have yet to reach it, but it appears to be characterized by a substantial decline in health, often as a result of contracting an opportunistic infection. Such a development usually has serious medical implications for the person involved, and it may, in turn, present a serious challenge to the extent of the person’s daily world. In instances where health status has taken a marked turn for the worst, it is possible to identify both physical and psychological changes which occurred as a result. IK9 Harry, recovering from a second bout of PCP pneumonia at the time of the interview, said that he had become increasingly reluctant to travel too far from his home, because he was unable to rely on his health: There are things that / would and could he doing, (but) ...I'm afraid to get out there. Like last night, I got caught out, and it was getting dark, and the cold air; the congestion started getting in my lungs so fa st I got scared, y ’ know. Both the impact of the illness and a fear of further complications deter Harry from leaving the apartment. Scott had recently been ravaged by parasites and by the antibiotics he had been given to treat them. Even though he seemed reluctant to concede the illness’ adverse psychological impact, he suggested that an episode such as this meant that: You have to keep yourself on a shorter tether from your home, from your base ...than perhaps y o u ’ d like to. At an interpersonal level, contacts may also be increasingly difficult to maintain due to the reduced level of activity. Harry has stopped attending college in recent months, so that one sphere of his existing social network is, at least temporarily, removed. Coping with a decline in health may be especially problematic when deterioration has a noticeable cosmetic impact. In such cases, the diminution of an individual’s world may be particularly severe. People find it difficult to deal with the disfigurement. When it begins, individuals may be unable to face others, or indeed, to deal with the now visibly desecrated space of their own bodies. Craig provides the clearest example of how visible decline has impacted a daily world (cf. chapter 7). Both Kaposi’s Sarcoma and chemotherapy have had a serious impact on his physical health and curtailed his activities. More particularly, the K.S. has brought to the surface awkward questions about the integrity of his body, and its ability to deal with AIDS. This has a marked affect upon 190 C raig’s daily world; he admits that it has prevented him from leaving the apartment. Symptoms, particularly the visible ones, represent direct challenges to the individual’s control over the personal space of the body. Jim seemed to be attempting to com e to terms with such a challenge at the time of the interview. His Myopathy has made it very difficult for him to walk or leave the house. Aside from imposing physical constraints on his daily path, the ailment has also positioned HIV/AIDS as a more central influence in Jim ’s life. Among the biggest problems in his life at the moment: Walking \s pretty high on the list right now. I wake up sometimes and I can 7 sleep cos o f the pain. In the daytime, I hope the legs are fine, or I can neutralize the pain and get the hell out somewhere, not fe e l like a total cripple. The physical progression of the illness imposes an identity upon Jim that he is unwilling to assume; that of the invalid or, in his terms, "cripple". The growing divergence between the mental image of Jim ’s ideal self, and the corporeal entity that he must inhabit on a daily basis has done much to lower his spirits in recent months. 9.7 Recovery The fifth stage may end in one of three distinct ways. First, an individual may be unable to deal with the symptoms of an opportunistic infection, and die. Second, a person’s health may be sufficiently depleted to necessitate hospitalization on a full-time basis. Third, the person may make a recovery of sufficient magnitude to allow him/her to maintain a degree of independence outside a full-time care facility. In the first instance, the nature of daily life is no longer an issue. In the second, the person may be forced to surrender virtually all independence. At this point, the seriousness of the illness, and the nature of the surrounding environment may induce sentiments of resignation and 191 acceptance. In a spatial sense, such a development means that the person’s physical world is essentially reduced to the hospital ward or other type of full-time care facility. I am interested primarily in the third option. Recovery from illness, and the presence of sufficient psychological strength will allow the continuation of "normal" life within a community setting. Indeed, it seems likely that continuing medical advances will make the cycle of relapse and recovery something that is played out several times prior to permanent hospitalization. If such an assessment is correct, many individuals will see a repeated deterioration and improvement of their health, parallelled by sim ilar fluctuations in their psychological stamina. Over time, the decline in health may grow steadily worse (i.e. as the peaks of recovery become less pronounced, the troughs of relapse more so), until a stage of complete dependency occurs. Unfortunately, given the limited size of the study, this final stage is based for the most part on informed speculation, rather than respondents’ experiences. However, I would consider Jim to be in an initial period of recovery following the problems caused by myopathy. Since Harry has already had two bouts of PCP pneumonia, he has already been through one complete cycle of relapse and recovery. Craig can also be considered to be at the beginnings of a recovery since the discoloration caused by the K.S. is beginning to clear. Finally, Scott is also beginning a period of relative recovery from the parasite. The individual’s daily environment will expand and contract in tandem with the fluctuations in health and attitude (indicated to some extent by Harry and Jim’s experiences above). Asked whether he thought his world had diminished in recent 192 months, Jim said simply: "sure, it's a smaller world, it'll get bigger again, but right now, it is much smaller." Interpersonally, the trends may prove a little more complex. It is possible that interactions will remain relatively constant. Even though poor health may curtail a person’s movement through physical space, social ties can be maintained. However, two factors work against this. On the one hand, an individual with AIDS may find it increasingly difficult to deal with people because of the illness, and hence sever all ties (this may be particularly true if AIDS has had a serious cosmetic impact). On the other hand, long periods of caring for someone may induce "emotional burnout" among informal care-givers. Finally, for the person coping with HIV and AIDS, cycles of relapse and recovery necessitate an ability to "negotiate a deal" with one’s body; in other words, to come to terms with the deterioration of the corporeal self. 9.8 An assessment The synthesis contained in this chapter invites a consideration of Kiibler-Ross’s classic work on the stages of death and dying (Kiibler-Ross, 1969).2 There are both parallels and differences that can be identified between her work and mine. On the one hand, the temporal progression of stages following diagnosis, and the varying psychological status of the individual that I identify clearly mirror the type of experience documented by Kiibler-Ross. The initial shock followed by an emotional metee of anger, denial, depression, guilt, withdrawal, hope, acceptance, and bargaining serve to reinforce 2 She has published a more recent book which focuses specifically on the problems faced by people with HIV/AIDS, and those who arc caring for them, but the initial assumption about the stages of death and dying remain unchanged (see KQbler-Ross, AIDS: The Ultimate Challenge, 1987). 193 Kiibler-Ross’s suppositions about how the individual copes with the news of approaching death. These feelings were mentioned by all respondents, either in reference to them selves or to someone with whom they were familiar. On the other hand, there are some important distinctions to be drawn between K iibler-Ross's analysis and mine. The first of these is, of course, that an HIV diagnosis does not necessarily imply "death and dying" {even though this is frequently the knee-jerk reaction from people informed they are HIV-positive). As 1 have stressed, diagnosis can be characterized more accurately as marking the beginning of a new episode in a person’s life. With continuing medical advances, a decade of life with HIV and AIDS is no longer an unreasonable expectation; this figure that contrasts markedly with the speed of impending death faced by many of Kiibler-Ross’s subjects. The series of reactions documented by Kiibler-Ross are a part of people’s experience with HIV/AIDS, but given the increasing length of time that many people live with the illness, life consists of much more than a straight-forward progression to acceptance. During periods of emergence and (repeated) recovery, and especially in those instances where a person remains largely asymptomatic, HIV/AIDS may not feature as a dom inant influence in a person’s life. The illness can instead be adopted as an additional elem ent of daily life. Jim ’s philosophy towards life with AIDS provides a good example; I t ’ s good fo r me to focus away from it. I don't have to live it everyday. It's part o f me, |but] I do what I ’m supposed to do and move on, th a t’s all. Perhaps a person experiences the spectrum of emotions that KUbler-Ross describes during the early stages of shock and cocoon when the reality of diagnosis is difficult to overlook. 194 Jeff, in particular, appeared to be suffering the ravages of depression, bargaining, and anger: Honestly, i f I could do it all again / would be totally celibate, I w ould’ve been, / could do it. J probably w ould’ve masturbated a lot though. I would not wish this on my worst enemy, i t ’ s a total nightmare. Dying in a auto accident or from gunshot wounds, it ’ s quick, it's over, you're gone. This is a slow death. O ver time, powerful emotions such as these are diminished as the presence of the illness is gradually accepted. For the model developed by Kiibler-Ross, acceptance represents the final stage before death. However, in this study, acceptance, at least an initial "acceptance" of the presence of the illness, brings with it the ability to recreate a daily life that incorporates, but does not revolve solely around HIV and AIDS. However. during periods of relapse, and with the emergence of more serious and lasting medical complications, people may be forced to revisit feelings of fear, depression, anger, denial, and to deal directly again with the prospect of death. In this sense, then, the stages identified by Kiibler-Ross are played out more than once within the context of the broader life stages that I have identified. Space, both at the level of the individual and at the level of community, is a crucial influence upon post-diagnosis life. A reflexive relationship exists between the physical and psychological strength of the respondent, and his ability to maintain the extent of an existing daily environment. This holds true at the corporeal level, in the sense that the human body is itself a bounded spatial entity that must be sustained physically and mentally. It is also true in an interpersonal sense since each individual's social network of friends and family members has a geographic dimension. An inability to maintain existing ties or to establish new friendships can induce a substantial reduction 195 of interpersonal space; in the same way, a deficient social network may have a deleterious impact, particularly upon a person’s psychological well-being. Finally, the relationship between space and the individual is, perhaps, the most apparent at the level of the daily path. Poor physical or mental health can rapidly diminish the extent of an individual’s lived space, and an inability or unwillingness to move beyond a narrowly defined home terrain may seriously limit a person’s access to a variety of much needed resources. The stages I have identified cannot be treated as fixed and immobile. An individual’s experience will be unique, and the length of time spent within each stage will vary. It is also important to note that the stages may overlap. Even though participants in this study spoke of a very abrupt ending of withdrawal and isolation, more subtle transformations may also be common. For instance, in the transition from relapse to recovery, and back again, it may be difficult to identify a specific turning point. A more accurate metaphor may be that of an ebb and flow, where the good days slowly begin to outnum ber the bad, and vice versa. Other possibilities are that some people may not experience all stages, or they may experience them in a different order. For those who experience a very pronounced decline in health, recovery may not be something they have to contend with. Others who fail to exhibit any symptoms over long periods of time, may find the initial psychological battle following diagnosis is succeeded by a prolonged period of emergence largely untroubled by physical decline. In terms of stage ordering, again the possibilities are numerous. For people diagnosed as a result of a marked decline in physical health, the shock and subsequent withdrawal may occur concurrently with a period of relapse and recovery. For others who are psychologically resilient, and 196 particularly those who remain asymptomatic for long periods, post-diagnosis isolation and withdrawal may not appear until after a marked physical or mental deterioration. These interpersonal variations highlight the dangers of attempting to "fit" people’s experiences to those described by a model. At the outset, I had little intention of creating such a generalized model. 1 had envisioned that, over time, the evolving medical and social dimensions of the illness would affect respondents differentially. This expectation did not prepare me for the similarities that appear to exist between people’s experiences in dealing with HIV and AIDS. The interdependence between the general and the specific can be captured by restating the stage model (Fig 9.1) in combination with the coping framework displayed in Fig 3 .1 (Fig 9.2). The super-imposition emphasizes the spatially and temporally dynamic nature of life following diagnosis. The stage model works to identify the series of changes common to most respondents. At the same time, the precise nature of the individual response remains unique since the magnitude, rate, and order of these changes is determined by a combination of five dimensions (individual, social network, services, community, broader context) peculiar to that individual. 9,9 AIDS and Death Throughout this thesis, it has been my intention to focus upon the nature of life with HIV/AIDS, rather than the nature of death. As 1 have stated several times, diagnosis does not mean immediate death. Many people live for a number of years with the illness and continue to lead rewarding and, to varying degrees, active lives. Yet whilst this is true, it is also imperative to remember that HIV/AIDS remains a terminal illness. At this point in time, the presence of HIV/AIDS continues to imply first, that death is inevitable, Fig 9.2 The changing dimensions of everyday life. E X PA N D E D W O R ID I I i I I ♦ STAGES OF COPING 1 .Pre-diagnosis 2. Shock 3 . C o c o o n 4 .E m erg en ce 5.R elapse 6. Recovery V ' Pre-diagnosis norm * 6 > 5‘ 5" D l [W IM IN ISH E D T I M ^ O R L D " - ■ ■ ■ * 198 and second, that while it may not occur immediately, it will occur prematurely. Thousands of people die each year from AIDS and AIDS related complications. One only need glance at the monthly HIV/AIDS Surveillance Reports from the CDC. or chart the growth of the AIDS Memorial Q uilt1 to appreciate the enormity of the loss. Not surprisingly, the implication of this is that death and the very thought of death together play a huge role in people’s daily lives. In fact, it may be appropriate to suggest that it is impossible to understand the reaction of a person with HIV/AIDS to life unless one first understands their reaction to death. As I have tried to illustrate with the stage model, the "em ergence1 1 that occurs following the initial period of shock and withdrawal is, in large part, a product of the individual’s ability to come to terms with his/ her own mortality. Thus life before emergence is dominated by the trauma of diagnosis, while the nature of life after emergence is governed by an appreciation of life and an urgency to accomplish, whether it be in a positive sense or not. In both instances, the sentiments are, in large part, the product of the individual’s encounter with death. I emphasize this point because in this thesis and elsewhere, there is a strong tendency to focus upon life with HIV/AIDS. Such a tendency is often motivated by a desire to re-valorize the post-diagnosis period; to emphasize that every effort should be made to assist individuals in overcoming the combined effects of the physical, psychological and social symptoms that were described above (the fact that medical advances have now substantially extended this period of time for many people makes it 3 Altman (1994, 82) reports that the quilt grew from the size of two football pitches in 1987 to the size of twelve pitches (roughly thirteen acres) in 1992, embracing over 20,(M M ) panels. 199 all the more important to do so). Yet ultimately, it is unwise to forget (or avoid) the fact that what defines this period of a person’s life is its intimate connection with his/her death. Acknowledging this need not detract from the period’s importance, rather it can aid in our understanding and appreciation of its value. 2(H) CHAPTER 10 Conclusion This thesis has been concerned with understanding what happens to a person’s world following an HIV diagnosis. As I suggested at the beginning of the thesis, much work has been done on the predicament of people with HIV/AIDS, yet very little of it has looked explicitly at the impact of such an illness upon the dimensions of an everyday environment. Here, 1 have tried to assess that impact by considering people's own impressions of how their lives had changed. Whilst the methodology and size of this study place obvious constraints upon my ability to speak about people with HIV/AIDS in general (something which may be increasingly applicable for all studies given the dynamics of the epidemic), it does nevertheless provide a colorful, and at times surprising, account of several people’s experience. The strong similarities and obvious differences which were identified among interviewees may also provide a useful basis for gauging the experience of others. In this final chapter, an effort is made to identify the key points raised within this thesis, and the degree to which they succeed in furthering our understanding of live with HIV/AIDS. The chapter is divided into two sections. The first provides a synthesis of the work which has been undertaken, and a critical look at the extent to which this analysis has helped answer those questions set out at the beginning of this thesis. Second. I briefly consider a variety of unresolved issues which form a basis for future research. 10.1 Synthesis Regardless of whether a person is male or female, black or white, rich or poor, gay or straight, living with HIV/AIDS is often an onerous task. For each individual, the 201 physical and psychological costs of the illness will impact an established pattern of existence in a significant and often irreversible manner. For as long as full control of the HIV virus remains beyond our grasp, this fact may be inevitable. However, acknowledging this does not imply that people with HIV/AIDS or those who support them are powerless to improve the quality of the formers' lives. On the contrary, the precise impact of the illness in each case is mediated by a host of characteristics displayed by the individual, and by the surrounding social environment. It is the influence of these attributes that determines the precise impact of the illness, and therefore, it is these attributes that should be understood as a precondition for informed intervention. W ithin the context of this thesis then, three basic questions were formulated about life with HIV/AIDS: (i) how are individuals impacted by the presence of the illness; (ii) how does this impact concomitantly transform individuals’ daily geographies; and (iii) what factors are responsible for determining the magnitude, direction, and timing of such change. To begin to answer these questions, an analytical framework was developed which would measure the relative shifts in the extent and shape of an individual’s everyday world. It was assumed that these shifts would occur at three levels of spatial inquiry. HIV/AIDS would induce change at the level of a person’s daily path (i.e: it would be responsible for altering the overall size of their social world), but it would also change their interpersonal network (a spatial expression of social ties). Third, it was thought that HIV/AIDS would work to alter a person’s corporeal geography (by changing both the functional ability and aesthetic appearance of the body). In terms of time, it was realized that because the nature of the illness varied among individuals, the days, months. 2(12 and years since diagnosis could only be used to indicate the likelihood that a person had progressed from asymptomatic HIV, through symptomatic HIV. to AIDS. Therefore, even though people display similarities in their experiences with HIV/AIDS, the timing of those experiences might vary considerably. To explain the variations in experience, the framework then focused upon rive broad dimensions which characterized a given individual’s life following diagnosis. These were (i) the physical, emotional, and socio-demographic attributes of the individual, (ii) the size and strength of their informal social network, (iii) the level of support obtained from a range of (public and private) service agencies, (iv) the attitudes and resources of the surrounding community, and (v) the overarching influence of contextual factors such as government policy and cultural setting. It was assumed that the particular combination of these five dimensions would act to "fine tune" a person’s experience with HIV/AIDS. Thus relative physical and psychological strength, the support of friends, access to good medical care, and manifold other components of daily life would all be significant in mediating the net impact of the illness upon an individual’s world. To test the validity of this framework, a pilot study was undertaken, consisting of a series of detailed interviews with nine men living with either symptomatic HIV or AIDS. During interviews, effort was made to identify the overall impact of the illness, the extent to which the m en's worlds had been diminished spatially, and relative importance of each of the dimensions listed above. Analysis of the interviews was then organized into six sections. Not surprisingly, the first five of these explored the relevance of the five dimensions. The sixth attempted to provide a coherent view of life with 203 HIV/AIDS using a series of stages to identify both similarities and differences among interviewees’ experience. The characteristics of the individual played a vital role in mediating the impact of HIV/AIDS. Even among the small number of interviewees, significant differences in experience were exhibited. Socio-demographic variables were in part responsible for this. Sexual orientation, age, and race/ethnicity helped to color people’s perceptions of the illness. Social status (income level) was a strong influence on levels of activity. Most interviewees felt constrained financially because HIV/AIDS made it very hard to secure regular employment. Lack of disposable income was a major factor in defining people’s daily worlds following diagnosis. In addition to socio-demographic features, the relative physical and psychological strengths of the individual in question had a profound effect upon the quality and dimensions of daily life. As one might expect, where a person’s health worsened, the physical changes had an impact at all three levels of spatial inquiry. They changed the shape of the body, and made immediate movement more problematic. This, in turn, made social interaction through space more difficult. It also worked to diminish the overall size of the interviewee’s daily environment. However, health could also improve. Among interviewees, several had overcome opportunistic infections. In addition, many spoke of much more frequent shifts in how they felt, characterized aptly by the expression "good and bad days." Psychologically, the changes were a little more complex. At one level, the shock of diagnosis and the manifold difficulties involved in dealing with HIV/AIDS had a 204 significant negative impact. Concerns about worsening health, death, disfigurement, dependency, others’ reactions, and so on worked to undermine people’s emotional resolve. They also succeeded in reducing movement and interaction through space. At another level, however, interviewees reported that diagnosis had brought with it an ability to see themselves, their lives and others in a new light. This also held spatial im plications for their daily worlds. The rethinking prompted by the appearance of HIV/AIDS often sent interviewees in new directions, to a variety of activities and encounters that expanded rather than diminished their worlds. I believe that this apparent contradiction is explained by the fact that at different points in time the positive and negative psychological impacts waxed and waned in their influence. For different individuals also, the relative balance varied. The nature of the respondent’s informal social network was also an important influence on experience. The social network was split into two components for the purpose of analysis (friends and family), and two questions were asked of each: how had they reacted to news of diagnosis; and what level of support did they provide. Among interviewees, relationships with friends varied significantly. W hether they had told friends about the illness, and the reaction they encountered if they had, influenced each interview ee’s psychological state. Fortunately, there were relatively few instances of explicit rejection, although several people reported less than positive responses. Where rejection did occur, it acted to diminish the interviewee’s interpersonal environment. Conversely, several people said that they had met new friends since diagnosis, suggesting the opposite effect. 205 In terms of support, experience was also varied. Access to both material/practical and emotional support was clearly an important part of sustaining day-to-day life. A lack of either worked in a variety of ways to diminish an interviewee’s world. It was clear from the study that among friends, two kinds were especially important. First, a room mate, lover or companion because they provided someone with whom to share fears and concerns, as well us assistance of a more practical nature on a full-time basis. Those who lived alone often displayed a clear deficit in this regard. Second, friends that were also living with HIV/AIDS provided a sense of camaraderie that could not be obtained elsewhere, and served as sources of information and advice about the practical matter of dealing with the illness. Family members were not, for the most part, important sources of material or practical assistance. They did however provide important emotional support for some interviewees, even if it was just "being there" when they called. Again three scenarios were witnessed: not telling the family, telling them and receiving a negative reaction; telling them and receiving a positive reaction. Each of these was experienced by one or more of the interviewees, and it was clear that those in the third category were at a clear advantage. This was especially true where family members were close-by since they provided an additional destination where time could be spent and com pany enjoyed. As well as the support of family and friends, interviewees were also reliant on the more formal assistance of a wide variety of service agencies. Three groups can be identified: medical, welfare, and other agencies. Although the interviewees all received health care through the public Medi-Cal system, their experiences did vary quite 206 considerably. Three themes were used to discuss these variations. The first concerned the relationship that the individual had with their doctor. In some instances, a closeness appeared to exist which allowed the doctor to function as a friend, listening and advising on a number of issues, not all of them medical. For others, bad experiences deterred them from returning for further consultation, making it harder to com prehend what was happening to them,and negating potential medical benefits that may have been available. The second theme focused on experiences in hospital. Those interviewees who had been hospitalized often distinguished between the quality of treatment received in specialized clinics, and that obtained from generic hospital settings. Several people reported neglect and indifference from the latter. There was also a distinction between the care obtained within the county system, and treatment received from organizations like AIDS Healthcare Foundation. The third and most important theme was the interview ee’s use of medication. W hilst some individuals actively participated in experimental drug programs, others refused to take any form of medication, preferring their own form of natural remedy. Variations in the volume and type of medication taken by interviewee had serious implications for their health on both daily and longer-term bases. They also had a m ajor impact upon the geographies of their daily world. For those interviewees who took medication, the side-effects often acted to limit activity. Those who didn’t avoided this constraint, but were forced to deal with the symptoms of illness unaided. As I have already noted, financial considerations often proved to be of great im port following diagnosis. Welfare therefore provided an vital source of aid for all interviewees. W elfare benefits were roughly the same for all individuals (claiming social 207 security and supplemental security income SSI). However access to them had been more problematic for some than others. In general, the money provided allowed only for the most meager of lifestyles. Many people felt that a lack of money was an equal, if not greater constraint on their activities than that of poor health. In some cases, these funds were supplemented either by an employed lover/companion or access to Section 8 housing unit. Several people wanted to return to work, but could not afford to lose the public health insurance if they did. The third group, non-profit agencies, played a significant role for each of the individuals also. AH used the food bank at APLA, as well as several other services therein. The majority of people also used at least one of the other services in the vicinity. These included Being Alive, Aid For AIDS, Shanti, AIDS Healthcare Foundation, and Minority AIDS Project. However, there were variations in the overall level of service use displayed by interviewees. Some made a specific effort to obtain all the assistance they were eligible for, whilst others, for a variety of reasons, declined. Together the agencies proved to be vital sources of in-kind income, financial aid, and services (dentistry, counselling, and referral) as well as important environments for interaction with others. Several people also volunteered at one of the agencies in some capacity, giving them a sense of responsibility, and additional insight into the spectrum of resources and assistance available to them. Overall, the service agencies were important in the lives of all interviewees. They had a wide variety of impacts on the geography of daily life, many of which were positive, others were not. For the most part, it appeared that services were used to 208 varying degrees to slow the diminishing of people’s worlds, but in return, those worlds became increasingly defined by the services concerned. The fourth dimension was the community. Here attention focused on the influence of two types of community, the gay community and those communities which were formed by the people’s home neighborhoods. In both cases, variations in interview ees’ experience helped to determine the nature of life with HIV/AIDS. Since all but one of the participants were gay it seemed appropriate to consider the guy com m unity’s reaction to the illness. Perceptions of this reaction varied significantly. At one extreme, several men argued that HIV had brought the gay population together as a united front against a common enemy (both the illness and society’s inaction). At another, more than one person argued that the virus had effectively divided the community; those men who had tested positive and their supporters on one side, the rest of the community on another. These perceptions were of course colored by interviewee’s own experience. Those who spoke favorably of the community had, for the most part encountered only altruism and acceptance since diagnosis. Those who were less optimistic had often met with some form of rejection. The likelihood of encountering rejection seemed to be at its highest for single men in search of a partner. Several of the interviewees had encountered ostracism in this way. At one level, this fact further indicated the value of having a full-time partner or companion. At another, it focused attention on the issue of sexual activity. When it became significantly more difficult to find a sexual partner following diagnosis, this indicated yet another way in which the interviewee’s world had diminished. Attempts to 209 avoid rejection retied primarily upon searching for others who were also positive. Regardless of the variations in experience, the high concentration of gay men within the immediate vicinity of interviewees did mean that the level of resources available to help them were high W hen considering the importance of community as place, interviewees all believed that significant variations in tolerance existed across the country. Urban centers, and particularly those on the West coast were thought by several to be the most understanding. In addition, the majority of interviewees believed that whilst people’s attitudes had improved generally over the last decade, the change had been motivated primarily by the increasing incidence of HIV/AIDS within the "general population", rather than a growing acceptance of gay men. Despite this consensus, people’s views of their own communities varied significantly. This was explained in part by the fact that interviewees came from a total of five different neighborhoods within the Los Angeles locale. However, perceptions were again influenced by personal experience. W hilst instances of adverse reaction were relatively rare, it was clear that several interviewees were extrem ely anxious about the possibility of ostracism and discrimination. In some cases, this anxiety had reached sufficient magnitude to impact an individual’s interaction and movement within the community. It was also clear that the anxiety was strongly bound up with a fear about the visibility of the illness. Change in the aesthetic appearance of the body caused by HIV/AIDS had worked in one case to significantly diminish a person’s daily path. For others, this had not yet happened, but concerns that it might were evident. 210 A fifth factor, the broader social context, was included within the framework to link interview ees’ immediate environments to a wider setting comprised of manifold components, such as prevailing state philosophy and cultural traditions. W hilst it was believed that these components would be significant influences on people’s lives, it was also realized that their impact might not be made explicit during the interviews. This was partly due to the design of the interviews, but also because their influence was not always readily apparent to participants. Analysis of the interviews indicated that both these constraints had been in effect. Responses were often short and lacked content. They focused primarily upon the role of the government and media in mediating the impact of the illness, although several references to cultural setting were also identified. There was a strong consensus among interviewees that the (Federal) government hud chosen to largely ignore the plight of people with HIV/AIDS during much of the last decade. By contrast, many thought that the media had done an admirable job reporting the unfolding epidemic, raising the public’s awareness in the process. The final section of analysis took something of a different approach to interviewees’ experience. Although exploration of the five dimensions of the framework indicated that their lives with HIV/AIDS had varied quite significantly, interviewees’ responses also contained a number of striking similarities that had yet to be discussed. To remedy this, an attempt was made to model the impact of the illness upon interviewees. The model suggested that a series of stages could be used to represent life before and after diagnosis. During each stage, the illness held a particular combination 2 1 1 of physical and psychological implications for the individual, which were subsequently translated into modifications of their daily world at one or more of three spatial scales. Furthermore, it was suggested that whilst the nature of these physical, psychological, and spatial impacts were common to all, their magnitude and duration were determined by the five dimensions previously discussed. Interviewees accounts did contain significant material to support the model, and six stages were identified. Rather than a steady decline in physical health, psychological resolve, and daily world, life appeared to be characterized by some quite substantial shifts in all three. So much so, in fact, that at some points in time, worlds could be seen to "expand" beyond a pre-diagnosis norm, whilst at other times, signs of decline were clear. The model points in no uncertain terms to the complexity of life with HIV/AIDS, and although it cannot be used to predict an individual’s experience, it does provide an initial basis for comprehension. 10.2 Future Research As a pilot study, this thesis has necessarily had a small and very specific focus. It is therefore problematic to generalize findings beyond the experience of the nine men who took part in the study. However, whilst I am willing to acknowledge its limitations, the thesis has succeeded in identifying a wide range of issues concerning life with HIV/AIDS which could be used to drive future investigation. The most obvious question concerns the extent to which interviewees’ experiences compare with others’ accounts. How do these gay m en’s experiences differ from those of straight men, of women, of gay men in other locations? Although I have warned 212 against sweeping assertions concerning people’s ability to deal with the illness, perceptions suggest that the average heterosexual man may have less experience and less knowledge about HIV/AIDS than his gay counterpart. To what extent will this deficit work to intensify the shock and withdrawal that appear to characterize life immediately following diagnosis? Similarly, women’s experiences may exhibit both similarities and differences with those presented here. A variety of more specific research questions also appeared during the course of the analysis. A selection of these are identified below. 1. Due to the small number of interviewees, it was difficult to make a substantive statement about the influence of race/ethnicity on a person’s experience. Despite this, A rm ando’s account, and the stories he related about his friends suggest that the Latino com m unity’s reaction to HIV/AIDS may be significantly less tolerant than others. An ethnographic study focusing on individuals within this "community" would enable us to evaluate this finding. 2. In health terms, this study has focused primarily upon the physical impact of HIV/AIDS. Yet, it also known that the illness can induce severe mental deterioration. How does this latter work to impact the dimensions of an individual's daily world? 3. A related issue concerns the later stages of the illness. To varying degrees, participants in this study were all currently active within the community. However, I have suggested that if the illness worsens, the overall size of the individual’s world will diminish until a period of permanent hospitalization is 213 reached during the final stages. To what extent is this image accurate? If it is accurate, what strategies are used by people to deal with or challenge the decline of their world? Is physical space replaced by mental space? 4. It was clear during the study that the non profit service agencies frequented by interviewees were often vital components of daily life. It also seemed apparent that the number of services open to them was unusually high. How does service availability in this locale contrast with others? Where agencies are less abundant, what impact does this have on individuals ability to deal with the challenges of HIV/AIDS? 5. During interviews, there was some evidence to suggest that negative reaction was encountered most frequently in the search for a partner. To what extent is this also true among heterosexual people with HIV/AIDS? Rejection also suggested that sex became a particularly problematic aspect of life following diagnosis. How does the lack of a sexual partner act to diminish a person’s world? W hat strategies are used to overcome this deficit? Are women placed in a more problematic position than men? 6. There was also evidence to suggest that visible signs of illness were highly detrimental to an individual’s state of mind, and had restricted their movement within the community. More needs to be understood about the anxiety shown by interviewees. W hat mechanisms are responsible for its creation? How does anxiety vary among different races, ethnicities, genders, ages, and at different stages of the illness? How does it act to diminish daily life? 214 7. Finally, the impact of the broader context was considered within this study, but with limited success. It seems likely that the various components com prising the broader context are, in fact, significant influences on people’s experience with HIV/AIDS. Therefore, more effective ways should be found to illustrate this influence. How do local, state and federal governments act to define everyday life? To what extent are people with H1V/A1DS represented within the legal system and planning framework? How does the media influence their own and others perceptions of what it means to have AIDS? In methodological terms, it is my opinion that many of these additional questions concerning life with HIV/AIDS can be approached through direct contact with people living with the illness. The continued use of informal observation, one-to-one interviews, and small focus groups will produce a substantial amount of insight into the difficulties involved in dealing with HIV/AIDS. Studies concerning the varying impact of race and ethnicity, gender, and sexual orientation can be carried out this way. For questions concerning the later stages of the illness, the impact of visible symptoms or the mental symptoms of HIV/AIDS, interviews may be the only way to achieve a viable understanding. However, despite the utility of this approach, several issues arise. First, there is the issue of sample size. The desire to maintain the depth of information garnered from interviews conflicts with the urge to increase the sample size, and with it the applicability of one’s conclusions. Although small comparative studies carried out with women, with straight men, and with different races and ethnicities would prove useful, they might still 215 lack the numbers needed to support the findings beyond the respondents’ own experiences. Focus groups may prove more viable than one-to-one interviews for three reasons. First, because they would allow the researcher to have direct contact with a much larger group of people; second, because the supportive group environm ent may actually improve people’s ability and/or willingness to discuss issues that they find problematic; and third, because of this, the group environment may be of direct benefit to the participants. An additional concern when thinking about expanding the research concerns the funding and support of such an endeavor. The process of conducting, transcribing and analyzing interviews is incredibly time-consuming. It is therefore difficult to expand the sample size and maintain the desired detail without substantial support. However, following the analysis of a pilot study such as this one, it may be possible to narrow the focus of the questions to those issues that appeared particularly significant. In this way, a more concise survey could be administered to a larger sample. Short-answer or multi choice questionnaires could be given to clients of a service agency or support group to be completed anonymously and returned upon their next visit. However, it is likely that the use of mail or telephone surveys to reach larger numbers of people will remain difficult because of the issue of confidentiality.1 A third concern with ethnographic research on HIV/AIDS concerns the level of com fort attained by both the interviewer and respondent during the interview. HIV/AIDS 1 Confidentiality must remain an important part of any study that involves direct contact with people living with HIV/AIDS because of the continued stigmatization and discrimination that occurs. 216 is intimately connected with a number of topics that to some degree remain outside the boundaries of accepted conversation; notably sexual intercourse, death and homosexuality. Regardless of how we might feel about these phenomena, asking people about their own experience with them can be difficult. The implication of this is that there may be a tendency either to avoid asking, or to ask, but fail to solicit an accurate answer. The magnitude of the problems encountered will, of course, depend upon the interviewer and the make-up of the study group. Attitudes about sex among members of the gay community may produce a far more frank discussion than one might obtain with an heterosexual Latino population. Yet at the same time, as a straight male. I may be less able to direct and/or enter into that discussion than would a gay researcher. Ultimately, the very existence of HIV/AIDS has already begun to necessitate an ability to discuss these topics without the presence of social sanction. With time, it is possible that they will cease to form a barrier to research. A final point concerns the broader context. Ethnographic research clearly did not provide an acceptable method of inquiry into the role of contextual factors. In many ways, this is unsurprising, since the expectation that respondents’ answers will validate a series of social theoretical precepts is somewhat unreasonable. However, as I emphasized above, broader contextual factors remain important. More appropriate means of investigation may include substantive reviews of government initiatives and spending on HIV/AIDS, and their implications for a specific locale. Sim ilar reviews could also be conducted to illustrate the importance of culture or the impact of economic change, and so form a backdrop for the more specific findings of an ethnographic study. 217 10.3 Closing Remarks I got a lot o f calls from all over the country when I was first diagnosed. Then, as time went by, it slackened off. Then, it got to the point when nobody was calling. It was like they were saying goodbye to me, but what about me? I ’ m not dead. (Jeff) Life with HIV and AIDS is by no means a straightforward process of decline and death. In many ways, it is perhaps more appropriate look upon diagnosis as the beginning of a new chapter in a person’s life. There are undoubtedly a great many challenges to deal with during this period, not the least of which is the physical deterioration of the body. It is true that worlds are diminished, but it is also certain that, with the right am ount of assistance, life can continue to be rewarding. O f course, attempting to distinguish the "right amount" of assistance is problematic. As we saw from the analysis, at a given point in time individuals may require assistance from specific components of a wide spectrum of services and resources. In some instances, the component required will be informal, like the help of a friend. In others, the assistance needed will be of a more formal nature. In each case, an ability to access the appropriate resources is vital if people are to be given the opportunity to live their lives to the full. At the very least, informed intervention could enhance the lives of people dealing with a terminal illness. More optimistically, it might delay the illness from running its course. Early administration of medicines, the availability of counselling, access to appropriate forms of accommodation, as well as community education efforts are all ways in which both individual and context might be favorably affected. It is my hope that this study will go some way towards understanding how that may be practically achieved. APPENDIX I Sample Questionnaire 218 CONFIDENTIAL INTERVIEW NAME:___ INTERVIEW NUMBER:. DATE:__________ TIME:_____ Introductory Statement Hi. my name is Robert Wilton. I’m a graduate student at the USC. Part of the requirement for my course is that I undertake a research project, focusing tin an issue of my choice. Since 1 have been working at APLA for some time, I decided that an important topic would be to attempt to learn more about the impact that HIV and AIDS has had on people’s lives, and what, in turn, can be done to lessen this burden. I asked you to participate in this interview because I wanted to understand exactly how you felt your life had changed since the time you were diagnosed, and your opinions about what could and/or should be done to help. I am taping the interview because I need a good record of what was said when I come to write up the results. However, it is completely confidential Your name does not have to be used at all. In addition, if there arc questions that you don't want to answer then please just say so and we can move on. If you want to take a break at any point, again just say so. 1. The person, when they were diagnosed, their current health status, and a subjective opinion of how they feel: What’s your name? When were you diagnosed with HIV? What stage of the illness are you now in? (asymptomatic/symptomatic HIV/AIDS) How would you describe your health at the moment? How do you feel? 2.A. The personal characteristics of people with HIV/AIDS: How old are you? Do you have a job? 219 If yes: As what? (full/part-time?) Is the income sufficient for your needs? Is your employer aware of your HIV status? If yes, are allowances made for you as a result? If no, what is the main reason for not revealing your illness? Aside from the financial benefits, why else is employment significant to you? If no: When did you last work? Why are you no longer employed? Do you think your HIV/AIDS diagnosis was a significant factor in ending your employment? (please explain) Given the opportunity would you be working now? Aside from the financial benefits, why else would a job be important to you? Accommodation Where do you live? Do you live alone? (develop this? if live with fricnd/lover...etc?) What type of accommodation do you currently live in? (house, apartment, hostel..etc) Is the accommodation is adequate for your needs?/ Do you like it here? Have you had to consider alternatives? If no: Please explain why? Would you like to move? What reasons prevent you from moving'/ Is your accommodation intended specifically for people with HIV/AIDS? If your health gets worse, where will you live? What's your view of this accommodation? 220 2.B. The person's self-image (i.e. how they feel about themselves) and world image (i.e. how they feel about life in general): Do you think a positive attitude about yourself is important in helping you to live with HIV/AIDS? Is it hard to maintain though? Have your feelings about yourself changed from before diagnosis, and with the progression of the illness? Is your attitude towards life in general optimistic or pessimistic? To what extent has this attitude changed? What do you think are the most significant causes of these fluctuations? To what extent do you think the illness currently defines (or. perhaps, even controls) who you are? Please explain. Do you think there are times when you make an effort (consciously or unconsciously) to be identified as some-one other than a person with HIV/AIDS Why is this? 2.C. The reaction that the person with HIV/AIDS has had from members of the surrounding community: How long have you lived in this community? Would you mind telling me why you moved here when you did?/ Where did you come from? If you had the opportunity to relocate, what would be the primary motivation for staying in the community?/ leaving the community? How aware do you think the community is of HIV and AIDS? How sympathetic do you think the community is to people with HIV/AIDS and those who help them? Do you have many friends with AIDS? Do you know of any other friends or associates that have encountered negative reactions because of their HIV/AIDS status? Could you briefly describe their experiences? Have you had any adverse reaction/unfair treatment as a result of HIV/AIDS? How am id attitudes be improved in your community? 221 3. A. The level of resources available within the community and from local service providers: What services in the community do you make use olV How do these services help you to cope with HIV/AIDS7 How adequate do you think they are? Do you have health insurance/coverage? Describe the type and extent of medical care you have received since diagnosis (emphasize the type of medication, how has it affected them?). How has it affected your daily life? Where has this care hecn received? Have you been hospitalized? If yes, where for, and for how long? Has the medical care you've received since diagnosis helped you to cope with daily life? Do you think you were treated any differently as a result of your HIV/AIDS diagnosis'.' Do you receive any support (financial or in-kind) from government welfare programs? Please explain which ones. If yes: Are any of them related directly/indirectly related to your illness? Were they difficult to obtain? Are they sufficient to meet your needs? If no, how do they fall short? Do you have any other sources of income to supplement these benefits? (cither financial or in-kind) If no: Why were you unable to secure benefits? Have you applied and been refused? What other forms of income (both financial and in-kind) are you able to draw on? 222 Arc Ihese sufficient to meet your neeils? If not, in what way do they fall short? Aside from medical care, are you making use of any other services? Where have these services been received/delivered from? How important are these services to help you to maintain day-to-day life? Did you have any difficulty in obtaining these services? (eligibility, distance, price,..etc) In the process of obtaining these services have there been instances when you fell you were unfairly treated? What about your friends? Could you explain what happened? What do you think would be your main criticism of the various service providers you have had contact with? Have there been instances when you’ve purposefully avoided contact with a service provider? 3.B. Social networks, how important have they heen in preserving/diminishing the quality and variety of an individual's daily life. Have you lost touch with any of your friends since diagnosis? Have you made new friends in the same period ' How much (if any) of this change do you think occurred as a direct result of your HIV/AIDS diagnosis? Is your family aware that you have HIV/AIDS? Have you seen (some of) them more/less since diagnosis? Since diagnosis, would you say that you've been more or less willing to ask cither friends or family for help? Why do you think this is? In turn, have your friends or your family been more or less willing to assist you when asked? Why do you think this is? Are your friends or family more important to you, in terms of helping you to get by? 223 Overall, how important do you think your friends and/or family arc in helping you to get by on a day-to-day basis? Do they provide enough help for you to get by on a day-to-day basis? 4, Daily paths, the places that people frequent: How many different places do you think you visit on a daily/weekly/regular basis? (describe movements on a typical day, be specific about times, distances and so on) When you travel, do you normally walk, take the bus, drive, rely on friends..etc? How does this list differ from one you might have given prior to diagnosis? Is getting around difficult for you? Do you think that this difficulty is caused by the illness, other factors related to the illness, or other factors entirely? Are there places you feel you can no longer visit because of HIV/AIDS? Please explain. Would you like to get out more? What are your main leisure activities at the moment? What do you do for fun? Is there sufficient opportunity for these activities within the immediate vicinity? How has the fact that you have HIV/AIDS limited your leisure activities? (please explain) Have you had more spare time on your hands since diagnosis? How important arc leisure activities to you in maintaining your quality of life? Ask generic question about sex life ..."oh, I wanted to ask your opinion about ...." 5. An overall sense from the person about the magnitude of changes that have occurred in their life since diagnosis, and the impact that these changes have had: Overall, in what ways do you feel your life has changed since you were diagnosed with HIV? Which of these changes have been for the worse ? for the better? (How) have things worsened as your health has declined? In what ways has your life remained constant? Overall, would you say that your world had diminished? 224 6. Finally, this section asks people for their input on how daily life might be improved: How do you think the quality of your life could he improved in the immediate future? What would make your life easier/better? What changes are necessary to make this happen? What do you think are the biggest problems you’ve got to contend with on a daily basis? How could these be alleviated? 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Asset Metadata

Creator Wilton, Robert David (author)

Core Title Diminishing worlds?: the impact of HIV/AIDS on the geography of daily life

School Graduate School

Degree Master of Arts

Degree Program Geography

Degree Conferral Date 1994-12

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag geography,health sciences, public health,OAI-PMH Harvest,social work

Language English

Contributor Digitized by ProQuest (provenance)

Advisor Dear, Michael (committee chair), Sloane, David C. (committee member), Wolch, Jennifer R. (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c18-6296

Unique identifier UC11357660

Identifier 1376535.pdf (filename),usctheses-c18-6296 (legacy record id)

Legacy Identifier 1376535-0.pdf

Dmrecord 6296

Document Type Thesis

Rights Wilton, Robert David

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA