Robin D Moremen. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
The Centers for Disease Control and Prevention (CDC 2001) describes acquired immunodeficiency syndrome, or AIDS, as a “specific group of diseases or conditions which are indicative of severe immunosuppression related to infection with the human immunodeficiency virus (HIV)” (p. 1). HIV suppresses the immune system by attacking the T4 lymphocytes, preventing them from recognizing and destroying even the most innocuous of foreign invaders. Once the immune system breaks down, opportunistic infections such as Pneumocystis carinii pneumonia, toxoplasmosis, Kaposi’s sarcoma, candidiasis, cytomegalovirus retinitis, mycobacterium tuberculosis, and herpes simplex may take hold (Stine 1998). If the progression of such infections is not checked by therapeutic agents, a person with AIDS (PWA) may become debilitated and die a slow, painful death from a foreign agent that would be rendered harmless in a person with an intact immune system. According to CDC (2000a) estimates, from 1981 through the end of 2000, 21.8 million people worldwide had died of AIDS, and 450,000 of these deaths occurred in the United States. The number of deaths increased each year from the beginning of the epidemic in 1981 until 1995, then declined in 1996-97 and leveled off thereafter, due to the introduction of highly active antiretroviral therapy. Mortality from AIDS in the United States varies with sociodemographic factors: The decline in deaths has been greatest among white men who have sex with men and live in the Northeast; it has been less dramatic for women, for blacks and Hispanics, for residents of the South, and for those whose risk exposure is heterosexual contact (CDC 2002a).
Many speak of AIDS in the medical and demographic terms described above. Were it that simple, AIDS would take its place in the panoply of potentially deadly diseases, and that would be the end of the discussion. However, humankind is neither fair nor just in this regard; certain diseases, and the people who acquire them, have been—and still are—singled out for negative evaluation and treatment. Like lepers, epileptics, and syphilitics before them, people with AIDS have had to endure a deeply discrediting attribute, or stigma, associated with themselves and their disease, a kind of spoiled identity (Goffman 1963). This spoiled identity is not an intrinsic part of the disease; rather, it is ascribed by others, foisted on the ill by a society keen on keeping “those people” away from “the rest of us.”
Stigmas often grow out of fear and loathing reactions by members of society who are ignorant about, and judgmental of, individuals whose lives and actions are somehow different from the “correct” and “proper” kinds of behavior espoused by the dominant group. The aversion to AIDS in U.S. society has grown out of some Americans’ fear and loathing of death, incurable disease, and marginalized groups such as homosexuals, prostitutes, injecting drug users, and impoverished whites, blacks, and Latinos. This fear and loathing have created a toxic mix of social stigmatization for PWAs. In the remainder of this chapter, I explore the nature of stigmas, stigmatizing illnesses, homophobia and AIDS-related stigma, stigma management and the construction of a positive AIDS identity, and the relationships among fear, stigma, and AIDS.
Goffman and Social Stigmatization
Erving Goffman (1963) is recognized as one of the first to draw our attention to the nature of stigma, although—according to Webster’s Dictionary—the term itself is quite old, referring to a distinguishing mark burned or cut into the flesh, as of a slave or criminal. Over time, the term stigma has come to mean an attribute that is deeply discrediting, an undesired differentness from what society anticipates as “normal” (Goffman 1963). As a result of this differentness, stigmatized persons are excluded from normal social interaction. In order for social stigmatization to occur, a fairly clear boundary must exist between the acceptable and the unacceptable. The more rigid the boundary, the more likely it is that those who deviate from the acceptable will be discredited or seen as defective or abnormal. Once stigmatized, a person is viewed as “not quite human,” which justifies society’s exclusion and discriminatory action.
Goffman identifies three kinds of stigmas: (a) stigmas of the body, such as blemishes and deformities; (b) stigmas of the character, such as promiscuity and immorality; and (c) stigmas of social collectivities, such as being poor or a member of a marginalized racial or ethnic group. All three of Goffman’s categories may be linked to persons with AIDS.
Stigmas of the body. Should the immune system become compromised and opportunistic infections take hold, a PWA may suffer from physical wasting or may develop skin lesions associated with histoplasmosis, herpes simplex, Kaposi’s sarcoma (KS), or Candida albicans. According to Goffman (1963), such deformities and blemishes are evidence of stigmas of the body. Western cultural standards of attractiveness and acceptable body image are fairly rigid, and the weight loss associated with wasting syndrome and the lesions associated with herpes and KS do not conform to these standards.
Stigmas of the character. In Western society, AIDS was first associated with men having sex with men and with the injection of illegal substances. Because Western society has firm proscriptions against homosexuality and intravenous drug use, AIDS became associated with Goffman’s second category of stigma, stigmas of character. Had the syndrome been associated initially with heterosexuals and the Boy Scouts, persons with AIDS undoubtedly would have avoided such negative characterological stigmatization.
Stigmas of social collectivities. After first appearing in gay men and injecting drug users, AIDS found its way into poor communities of color. This conforms to Goffman’s last category of stigma, stigmas of collectivities. Goffman argues that stigmas may be transmitted through lineages and social groupings, such that all members of a race, nation, religion, or social group may share a tribal stigma. This has been evident in U.S. society’s negative response to people of Haitian descent when it was discovered that some members of the black Haitian immigrant community were HIV-positive.
Self-isolation. Goffman (1963) argues that stigmatized persons may begin to self-isolate because society fails to accord them the respect and appreciation they expect and anticipate. For some HIV-positive individuals, such isolation may begin as soon as they learn of their HIV status. They may isolate themselves out of fear that others will learn of their HIV status and disengage from them, causing them to lose their jobs, their health insurance, their homes, their friends, their partners, and their families. Stories in the news media about PWAs being expelled from homes, schools, churches, and jobs only serve to reinforce this belief. Sometimes the shock of a positive HIV test result is so severe that individuals have thoughts of suicide (Adam and Sears 1996).
Psychic pain. Lacking the beneficial effects of daily social interaction with others, Goffman (1963) suggests, people who isolate themselves may become suspicious, depressed, hostile, anxious, and bewildered. PWAs may suffer from emotional, mental, and spiritual pain as well as physical debilitation (Dunbar et al. 1998). They may be shunned, feared, or cut off from the very people who might best offer them social support. The psychological literature is replete with evidence that social support acts as a buffer against stress and increases physical and mental wellbeing. These are benefits that PWAs may not experience.
Stigmas by association. Goffman (1963) also contends that stigmas may spread by association, from stigmatized persons to those with whom they have close connections. Therefore, others may avoid such relations with stigmatized individuals or terminate previously existing relations. Some people may shun persons with AIDS for fear that they, too, will be burdened with stigma and that others may assume they are also PWAs or, worse still, promiscuous gay persons with AIDS. Thus, in addition to self-isolation, stigmatized individuals may find that others—friends, neighbors, relatives, associates, partners, and family members—sever connections with them out of egoism and self-concern.
AIDS-related stigma. Although AIDS-related stigma has lessened in the United States in recent years, some individuals continue to be stigmatized. Those most likely to suffer AIDS-related stigma are individuals on the margins of society: gay men, intravenous drug users, women (particularly female sex workers), people of color, and people who are economically disadvantaged. The CDC (2002b) reiterates this point in its HIV Prevention Strategic Plan, which it issued on World AIDS Day in 2002:
Stigma associated with HIV/AIDS continues to profoundly affect prevention efforts, leading people to deny risk … avoid testing … delay treatment … and suffer needlessly. While stigma’s pernicious effects are perhaps most obvious in countries other than the U.S., where people may be shunned and physically harmed, stigma negatively affects Americans as well. It is found at the structural level, in the form of laws and regulations, as well as more explicitly at community and individual levels.
Homophobia continues to hamper prevention efforts at all levels: from the individual at risk or infected, who may deny his risk because of internal conflicts, to the broader culture, which delivers anti-gay messages, institutionalizes homophobia through structural mechanisms, such as laws that regulate intimate sexual behavior, and lags in its support of sensitive and honest prevention for gay and bisexual youth, young adults and older men.
Stigma associated with addiction and illicit drug use also results in laws and other restrictions on effective prevention. Likewise, persistent social and institutional racism and gender and economic inequities stifle effective HIV prevention. For each of these groups at risk, stigma, stereotyping and prejudice must be addressed for prevention to be most effective. Political leadership and will are necessary to address these underlying issues, so critical to prevention’s success.
Although most persons in the United States do not hold stigmatizing views of PWAs, approximately 20% of Americans still do (CDC 2000b). Such views are most common among people who are male, white, heterosexual, and 55 years of age and older, who have only a high school education, who have annual incomes of less than $30,000, who are in poor health, and who are generally misinformed about AIDS transmission (CDC 2000b; Herek 1999). Leaders of the Christian Right also work to keep AIDS-related stigma alive (Herek and Capitanio 1999).
Stigmatizing Illnesses and HIV/AIDS
Rose Weitz (1991) has written extensively about stigmatizing illness and HIV/AIDS. She begins with the premise that people who are ill are generally deemed less socially worthy than people who are healthy, and that most people who are ill are blamed somehow for their illness. This premise dates back to Talcott Parsons’s (1951) notion of the “sick role,” a concept he uses to describe the role in society of people who deviate from the social norm of wellness. Weitz argues that society views some illnesses as especially horrible because of the blame and dread they evoke, and this leads to the stigmatization of those who contract such illnesses. She maintains that the six conditions discussed below must be present for blame, dread, and stigma to occur; HIV/AIDS continues to conform, in some ways, to all six of these conditions.
Blame, dread, and stigma are greatest when the illness is connected to already stigmatized groups. AIDS was first identified in stigmatized populations—gay men, drug users, black Haitian immigrants, and prostitutes—and many in mainstream society felt, at least initially, that AIDS was fitting punishment for individuals who engaged in unacceptable behaviors, as defined by the dominant group. As the epidemic progressed and PWAs were identified who did not fall into these stigmatized categories (e.g., individuals who contracted AIDS from blood transfusions), a rhetoric of “innocent” versus “guilty” victims emerged; this dichotomy persisted into the late 1990s (Herek and Capitanio 1999). Thus AIDS stigma has been greater for those who are held responsible for their disease than for those deemed innocent victims (Herek and Capitanio 1999; Leiker, Taub, and Gast 1995).
Stigma is especially likely if the illness is linked to sexuality, and most especially to stigmatized sexuality. Western culture views sexuality with both fear and fascination. Sexual drives are among our most basic, but we refrain from discussing sexual behavior openly, especially “deviant” sexual behavior that is likely to result in sexually transmitted diseases such as HIV/AIDS. The Christian Right has done its best to prevent AIDS education programs from disseminating explicit information about the sexual behaviors linked to HIV transmission on the premise that these behaviors are deviant (Herek and Capitanio 1999). Furthermore, numerous studies have found that persons who are knowledgeable about HIV/AIDS and safe-sex methods do not necessarily put what they know into practice. This is particularly true of adolescents and the elderly; the former consider themselves invincible, and the latter cannot envision themselves as being at risk. One of the biggest public health gains made in the second decade of the AIDS epidemic was the increased public acceptance of frank talk about sexuality for all age groups, specifically in reference to the relationship between certain sexual practices and HIV transmission.
Stigma is highly likely when there is no vaccine available and the illness is viewed as contagious. To date, no vaccine or cure for AIDS exists, although the introduction of highly active antiretroviral therapy in 1996 has dramatically increased the survival time of persons living with HIV/AIDS (CDC 2002a). Many believe that HIV/AIDS will not be cured, but will become a chronic infectious disease that can be managed, not unlike diabetes, multiple sclerosis, or asthma (Moremen 1999). HIV is contagious, but the major route of transmission is the exchange of body fluids, not casual contact. In early studies, the CDC found that the level of people’s fear concerning casual contact with PWAs was extremely high, and more recent studies appear to indicate that this is still the case (Herek and Capitanio 1999). Approximately a quarter of Americans continue to hold the belief that they may magically contract HIV by touching a sweater worn by a PWA or by drinking from the same glass as a PWA (CDC 2000b; Herek and Capitanio 1999). Beliefs such as these serve to fuel the fires of stigma against PWAs.
Stigma is especially likely if the illness brings about visible, disfiguring, or dehumanizing changes in the sick individual. Visibly disfiguring conditions have always evoked horror and loathing, whether associated with infectious disease or not. Historically, people with disfiguring conditions have been isolated, quarantined, exiled, exploited, or locked up (e.g., the Elephant Man, people with disabilities, people with leprosy or epilepsy). By removing the affected from public view, the unaffected avoid having to acknowledge the frailty of the human condition or accept that they are one accident or illness away from disability and death themselves. Although highly active antiretroviral therapy has lowered the incidence in PWAs of disfiguring conditions such as bodily wasting and Kaposi’s sarcoma, these conditions still afflict 28% and 21%, respectively, of all persons who die of AIDS (Stine 1998; CDC 1999). With each new infection, a person living with AIDS typically experiences a 5% loss of body weight; this problem is most prevalent among PWAs who are female and among those who are economically disadvantaged (Stine 1998:147). Disfiguring conditions such as wasting and KS may evoke fear and loathing of persons in the advanced stages of AIDS.
Stigma is great if the illness results in death or significant disability and appears to have consequences for society as a whole. Prior to the introduction of antiretroviral therapy, HIV infection uniformly progressed to AIDS, resulting in disability and death. Now, for those HIV-positive persons who can afford the medications, the opportunistic infections associated with AIDS may be held off for years, possibly even decades. For those who cannot afford the medications, or who have greater difficulty accessing regular sources of care (e.g., sex workers, injection drug users, the uninsured, poor women of color), early death is far more likely. In the early years of the epidemic, AIDS did not appear to have consequences for society as a whole because it was associated mainly with marginalized groups or people in foreign lands; however, as AIDS entered the heterosexual population in the United States and the number of cases worldwide increased, the social consequences of this global epidemic, in which everyone is potentially at risk, became difficult to ignore. That AIDS has consequences for all of society only increases the fear associated with the disease.
Stigma is exacerbated by mysteries regarding the origin and progression of the illness. The origin of AIDS remains speculative, as does the progression of the illness. Why is it that some people remain HIV-positive for decades without progressing to full-blown AIDS and others progress to AIDS almost immediately? Studies are currently being conducted on individuals known as “nonprogressors”—those who are HIV-positive but appear to remain illnessfree indefinitely (Haynes, Pantaleo, and Fauci 1996). Some researchers have speculated that nonprogressors may have a missing link in their viral DNA, but this explanation is theoretical at best. Questions for which we have no answers intensify the mystery surrounding HIV/AIDS and only add to the associated stigma.
AIDS and Homophobia
Many gay activists, journalists, and scholars draw a direct link between AIDS-related stigma and homophobia, arguing that fear and hatred of homosexuality and homosexuals is the primary source of stigma associated with AIDS and that this association is responsible for the lackluster response to HIV/AIDS in the early 1980s in the United States (Altman 1987; Gunther 1995; Herek and Capitanio 1999; Leiker et al. 1995; Shilts 1988). Because AIDS was initially identified as a “gay disease,” social, political, medical, and economic resources were denied to those who needed them most; this had tragic consequences for persons with AIDS in the early years of the epidemic.
Gunther (1995) asserts that the link between homophobia and AIDS has resulted in three categories of AIDS-related stigmas, each of which includes aspects of the others: (a) fear of the disease itself, (b) fear and hostility toward those most affected and deemed most responsible for the disease, and (c) fear and hostility toward the specific behaviors that transmit the disease (on all these points, see also Herek 1999; Herek and Capitanio 1999; Leiker et al. 1995).
Fear of the disease itself. In the early years of the epidemic, AIDS was a disease of gay men that seemed to appear out of nowhere. No one understood how it was transmitted, no one understood how or why gay men were dying, and the physical attributes of the disease were visually terrifying. The high degree of uncertainty about the disease resulted in fear of the disease itself. This argument is not unlike Weitz’s (1991) argument, noted above, that society fears mysterious sexually transmitted diseases in stigmatized populations.
Fear and hostility toward those most affected and deemed most responsible for the disease. Once AIDS was associated with specific groups of people—and not yet associated with specific behaviors of all groups of people—it was easy for society to move from fearing the disease itself to fearing and blaming the people most affected by the disease: men who have sex with men. Because gay and bisexual men were the first AIDS casualties, it did not take long for society to link the disease to stigmatized activities associated with gay sex. This resulted in a cascade of condemnatory language from the Christian Right; AIDS served as a symbolic vehicle for heterosexuals to express preexisting sexual prejudice (Herek and Capitanio 1999).
When it became apparent that Haitian immigrants—many of whom were heterosexual—also were casualties of the epidemic in numbers that were out of proportion to the size of this group in the population, race-related stigmas were added to gay-related stigmas. African Americans—by their skin-color association with Haitians—other immigrant groups, and ethnic minorities such as Latinos/Latinas found themselves the victims of fear and hatred as well, as race-related stigmas spread. When injecting drug users were added to the mix, the triumvirate of risk groups associated with AIDS was complete.
Risk-group thinking allowed people who were not members of particular groups to wall off their fears of contracting AIDS, at least temporarily, and provided further impetus for them to blame those who were members of the risk groups for bringing the disease into society (Herek and Capitanio 1999). Furthermore, members of risk groups were stigmatized to begin with, so the social, economic, political, and medical inaction of society in regard to AIDS was justified—”those people” deserved their fate. This “we/they” thinking—which began with gay men and then was transferred to other groups of marginalized people—proved extremely ineffective in containing the spread of the disease, but it helped the members of white, middle-class, heterosexual society feel better about themselves for a brief period.
Fear and hostility toward the specific behaviors that transmit the disease. Just as specific groups of people became feared and hated because of their association with HIV/AIDS, specific risk-group behaviors suffered the same fate as well (i.e., men having anal intercourse with other men, men and women having multiple sex partners, female sex workers having sex for money, and individuals using needles to inject drugs). With the exception of promiscuity (i.e., having multiple sex partners), all of these behaviors were subject to prosecution—thus society had already decided to put the weight of the law behind its labeling of these behaviors as deviant.
Society in general viewed the sexual behaviors of gay men as deviant, so society felt no obligation to treat PWAs in a caring and compassionate manner. The argument went that society had no obligation to care for individuals who brought about their own demise; persons with AIDS were not innocent, unwitting victims of an illness, but willing conspirators in their own doom. Even though society provided compassionate care to people who were dying because they ate, drank, or smoked too much, it had no obligation to respond similarly to gay men with AIDS, because they participated in sexual behaviors that elicited both fear and loathing on society’s part.
In some respects this is a “good news/bad news” story. The good news is that the individuals most blamed for the epidemic (i.e., gay men) were also the people who were most successful at raising AIDS awareness and garnering funds for research and education/prevention efforts (Herek and Capitanio 1999). Gay men also have been quite successful in constructing a more positive AIDS-related identity for themselves. The bad news is that a large segment of the heterosexual community, even today, continues to associate AIDS primarily with homosexuality (or bisexuality), and this association is correlated with higher levels of sexual prejudice (i.e., antigay attitudes) (Herek and Capitanio 1999; Leiker et al. 1995).
Stigma Management and the Construction of a Positive AIDS Identity
Society constructs the discrediting labels and identities associated with stigmas, and so may also deconstruct and manage such labels and identities. Stigmatized individuals may influence the ways others see them by employing adaptive strategies and identity management. Sandstrom (1990, 1998), Siegel and Krauss (1991), Siegel, Lune, and Meyer (1998), and Tewksbury (1994) all speak to these issues in relation to gay men living with HIV/AIDS, but in many respects what they have to say applies to all PWAs.
Adaptive strategies for living with HIV disease include dealing with the possibility of a curtailed life span, dealing with reactions to a stigmatizing illness, and developing strategies for maintaining physical and emotional health (Siegel and Krauss 1991). Adaptive strategies for living with advanced symptoms of AIDS are somewhat different, but related. These include coming to terms with debilitation and a shrinking future; confronting the threats of suffering, dependence, and death; and building a postmortal self (Sandstrom 1998).
For those living with HIV/AIDS, identity management often occurs along a continuum from reactive to proactive, depending on the extent to which an individual accepts or challenges the stigma associated with HIV/AIDS (Siegel et al. 1998). Reactive strategies include attempts to hide one’s HIV status, such as passing, covering, isolating, or distancing oneself from AIDS-related stigma (Sandstrom 1990; Siegel et al. 1998). Proactive strategies include building and embracing an AIDS identity and engaging in public educational efforts and social activism to change the social and political conditions associated with HIV/AIDS (Sandstrom 1990; Siegel et al. 1998). Following the path of gay men and lesbians in the gay rights movement, some HIV-positive individuals have proudly laid claim to their identities both as gay men and as people living with HIV/AIDS (Tewksbury 1994). Adopting the self-reference of a “person living with AIDS” places an emphasis on personhood and on living, not on objectification, illness, death, and victimhood (Tewksbury 1994). Interestingly, Tewksbury (1994) has found that heterosexual men living with AIDS have the greatest difficulty managing their identities (compared with gay men and heterosexual women with AIDS) because they have the least prior experience in adjusting to a marginalized and socially devalued status.
Women with AIDS appear to adopt a strategy that falls somewhere between the strategies of heterosexual men and those of gay men, largely because women face different issues. Many HIV-positive women report histories of trauma, including having been physically and sexually assaulted; they also describe histories of severe substance abuse and earned income through the sex industry, and often they are attempting to provide for children and other dependents (Adam and Sears 1996; Blankenship 1997; Dunbar et al. 1998). Despite these lifelong hardships, HIV-positive women are less apt to manipulate language to disguise their disease and are more likely to devote energies to their additional roles, such as being mothers (Tewksbury 1994). Like gay males, women experience social devaluation in society more generally and do not find HIV disease as identity altering as do their heterosexual male counterparts (Tewksbury 1994). Some women report being able to use the pain and despair of the HIV diagnosis as an opportunity for self-awareness and growth, and describe a profound healing in their lives that makes room for a richer existence (Dunbar et al. 1998). Gay men and heterosexual women living with HIV/AIDS appear to be adopting strategies that wrestle AIDS-related stigma to the ground and redefine it in terms of personal and collective empowerment.
Fear, Stigma, and AIDS
The social stigmatization associated with AIDS is often tied up with fear, particularly fear of death, fear of incurable disease, and fear of marginalized groups.
Fear of Death
Becker (1973) argues that the United States is a death-denying society. Whether the fear of death is learned (healthy-minded argument) or innate (morbid-minded argument), it pervades our everyday existence, and it is only by repressing this fear that we can get on with the business of living. If we were to stare into the chasm of death on a daily basis, we would be immobilized. Thus we deny death’s existence (employing our many euphemisms for death) even as we remain fascinated with death in private (as our death-saturated popular culture shows) (Gorer 1965). Like sex, death is a topic we do not discuss openly, nor do we prepare for death at home. We remove the dying to hospitals and nursing homes, and when they finally cease to live, we ship them off to funeral parlors, where they are made to look less dead. Over the past two centuries, we have come to view the members of the medical profession as our high priests; it is their job to “cure” us of death so that we are never forced to confront our fears. And when they fail to do so (as they inevitably must) our fears surface again, only to be pushed down by the next wave of denial. If we consider any death to be good, it is a death that comes at the end of a good long life; an early or unexpected death is considered a particularly bad death. A death preceded by a great deal of pain and debilitation is considered a bad death as well.
If we considered death to be a normal, inevitable, expected, and cherished part of life, our fears about it would not necessarily dictate our responses to those who are dying. But because we stubbornly refuse to stare into the abyss, we bring our fears with us to the beds of the dying. They remind us only too well of our own unutterable fate. In our attempts to deny death, we often deny the dying as well. This is part of the fear that we bring to those with advanced symptoms of AIDS. In them we see our own failure to beat back death. In their wasting bodies, we see the reflection of our own mortality. And because we reject this vision, we often reject them. It is from these origins that stigmas are born. We differentiate ourselves from their experience—they are the dying and we are the living. We are not like them.
Fear of Incurable Disease
The mysteries of incurable disease have always elicited fear in human beings. From the bubonic plague in the 13th century to the polio epidemic in the 20th century, people have reacted with fear and panic when faced with diseases that appear to be unknowable and incurable. Diseases provoke such fear particularly if they are contagious (e.g., smallpox) or if they are debilitating and result in slow, painful death (e.g., amyotrophic lateral sclerosis, or Lou Gehrig’s disease). A case in point: We know that men seek treatment for any medical problem far less frequently than do women, but women are not more likely than men to seek prompt medical care for cancer or ischemic heart disease (Waldron 1985). It turns out that women, like men, are afraid of being diagnosed with any disease that may be incurable or lead to death. Although medical professionals may perform surgery to bypass arteries and infuse poisonous chemicals into the bodies of people with cancer, they have no cures for many of the chronic conditions that plague modernity, and ultimately we know this, whether or not we wish to admit it. A diagnosis of cancer, in particular, strikes fear in the heart of anyone who receives it. Those who are told they are HIV-positive experience a similar dread. In such cases, most people’s initial, knee-jerk response is, “I’m going to die!” whether or not this is true. People respond this way because they associate incurable disease with death, and both elicit the most basic of existential fears.
The fear of disease is exacerbated when the death it causes is slow, bringing pain and debilitation. The misfortune of dying of AIDS is that the virus chips away at the immune system until nothing is left to defend the body from within. Organ systems die by degrees, with the body taking on an emaciated appearance toward the end. Often this is accompanied by extreme pain and demented cognition. No one would knowingly choose this for themselves, yet thousands of persons with AIDS have had to experience this kind of death. The gruesomeness of this particular death fuels the fear and revulsion that the fear of death itself initiates. Add to this mix the fear of marginalized groups that society imposes, and the social stigmatization of AIDS is complete.
Fear of Marginalized Groups
In social hierarchies, there are always dominant and submissive groups. Those at the top have access to the power and resources they need to maintain their dominance, and those at the bottom are marginalized because they lack access to the same power and resources. Once those at the top have acquired their power and resources, which they may do through no particular efforts of their own, they maintain their control by reinforcing the differentiation between themselves and those below. One way they do this is by defining themselves as superior and those beneath them as inferior. In addition to their access to power and resources, those at the top of a society usually have the opportunity to define that society’s reality. Part of this definitional prerogative is the determination of what is acceptable and what is unacceptable. Invariably, dominant groups identify their own characteristics, behaviors, and belief systems as acceptable and those of less powerful groups as unacceptable.
Race, class, gender, religion, sexual orientation, and able-bodiedness are some of the dimensions along which power and privileges are differentiated in the United States, such that if you are white, middle- or upper-class, Christian, heterosexual, able-bodied, and male, you are most likely on top, and keeping those who are nonwhite, poor, non-Christian, gay, disabled, and female beneath you reinforces your position of privilege. These dimensions intersect and multiply, both for individuals at the top and individuals at the bottom. Thus, to be white is to have power, but to be wealthy and male and white is to have even more power; conversely, to be poor is to have no power, but to be black and female and poor is to have even less power.
When a disease that causes agonizing death arises among those at the bottom of society, the marginalized existence and generalized unacceptability of individuals afflicted with the disease are only reinforced. And in order to distract from the inequality built into the system, the powerful blame the victims for their illness, denounce them as deviants, and deny them access to resources. If they were to do otherwise, the very existence of the hierarchy would be called into question, and that is something those at the top cannot tolerate. Most unfortunately for persons with AIDS in the United States, the first victims were people at the bottom of society, and thus the entire course of the illness has been defined, from the outset, by their marginalized existence. Our fears of death, incurable disease, and marginalized groups have combined to produce the social stigmatization attached to dying of AIDS.
What will it take to bring about change in the social stigmatization of people living with and dying of AIDS? Some would argue, and quite rightly, that the social stigmatization of PWAs is less evident now than it was a decade ago. Antiretroviral drugs allow people with HIV/AIDS to live longer and perhaps delay revelation of their illness. Surveys have found that most Americans are fairly knowledgeable about HIV/AIDS and supportive of PWAs (CDC 2000b), but AIDS-related stigma still exists. Continued progress in three areas will help to lessen the social stigmatization of persons with AIDS: changes in societal attitudes about death, the continued management of HIV/AIDS as a chronic illness, and societal recognition of the inequity of associating HIV/AIDS with marginalized existence.
The hospice and palliative care movements have begun to humanize and naturalize death. We have a long way to go to overcome our existential fears, but these movements, which change the settings where death takes place and acknowledge the need for comfort care, not cure, represent a step in the right direction. Antiretroviral therapies are extending the lives of people with HIV/AIDS, such that we have now begun to think of AIDS as a manageable disease as opposed to one that is always fatal. (This, unfortunately, is strictly a Western phenomenon. People with AIDS in developing countries are not able to afford AZT, much less the combination of drugs that will extend their lives, and drug companies appear to be more concerned about profits than about care. Until this changes, a staggering majority of AIDS deaths will take place in non-Western cultures.) As AIDS education and prevention efforts have proceeded in the United States, there has been more openness about sexuality and the sexual practices most linked with HIV/AIDS, and as needle-exchange programs have advanced, the sharing of infected needles has declined. Both of these efforts remain extremely controversial in some segments of society (e.g., the Christian Right), therefore we need to remain vigilant and not let complacency or harassment undo the good that has been done thus far. Finally, over time, Americans are slowly recognizing that AIDS is not associated exclusively with members of marginalized groups. People living with AIDS are pursuing empowerment strategies, and many members of mainstream society realize that they, too, are at risk.
All of these are positive first steps; however, we still need to work to dismantle the structures that led to the social stigmatization of persons with AIDS in the first place. This work will require a kind of acceptance and tolerance that societies heretofore have not exhibited, as well as a leveling of the hierarchical structures that reinforce and maintain the stigmatization of marginalized groups. That is a tall order for a small planet.