Uncertainty and the lives of persons with AIDS

This article uses interview data to explore how 23 gay and bisexual men who had AIDS were affected by and managed uncertainty. Before diagnosis these individuals had to find ways to cope with uncertainty about their risk of contracting AIDS and about their initial symptoms. After diagnosis they had to find answers to their questions about why they contracted this disease, whether they would be able to function in the short run, whether their illness would kill them, and whether they would be allowed to live and (if death was unavoidable) to die with dignity. The data suggest that persons with AIDS respond to the uncertainties of their illness by attempting to assert as much control as possible over their lives, through such divergent strategies as seeking and avoiding knowledge about their illness.     

ANTICIPATORY AND ACTUALIZED IDENTITIES: A Cultural Analysis of the Transition from AIDS Disability to Work

Throughout the course of their lives, many people living with HIV/AIDS have prematurely retired onto AIDS disability. A new trend, however, has swept across the nation. Where once people were getting sick, leaving work, and embracing inevitable death, now, with advances in medical technology, many people with HIV/AIDS are renewing their lease on life and discovering a desire to go back to work. To learn how gay men's identities are impacted as they transition from AIDS disability back to the labor market, I conducted three months of fieldwork at an employment placement agency in San Francisco. During fieldwork I distributed informal questionnaires to 120 gay men and then formally interviewed 10 additional gay men who had either transitioned or were considering transitioning from AIDS disability back to work. Analyses reveal that cultural, structural, and medical contradictions typify the return to work. As gay men experience and live through these contradictions, their identities split into anticipatory and actualized components. By facilitating a reassessment of meanings and values, anticipatory identities cognitively and emotionally prepare individuals as they brave the road back to work. This version of identity represents a romanticized confluence of worker (role) identity, gay (status/master) identity, and overall sense of self (self-concept). Personal experiences with stigma, shame, and discrimination along with complexities of the workplace and medical services, however, prevent the maturation of anticipatory identities when seeking reemployment. This results in loosely coupled and situationally informed actualized identities . The relationship between these two identities suggests that many people living with HIV/AIDS—and indeed others who experience stressful life transitions—face complex choices between quality-of-life issues and the ability to survive according to external cultural and structural constraints.     

Negative Consequences

Abstract

This article reports the results of a qualitative study of self-identified HIV-Negative gay/bisexual men living in urban gay communities. The study explored the effects of living through nearly two decades of the AIDS pandemic. Most researchers have focused on those who are HIV-Positive. Those whose serostatus is HIV-Negative are rarely included, but are greatly affected by this disease. An increasing number of these men, especially younger men, are seroconverting. Forty-seven gay men returned a questionnaire asking about feelings on being HIV-Negative, dealing with grief, sexual practices, and relationship and caregiver issues. Many HIV-Negative gay men reported psychological problems such as depression and unresolved grief. Therapists and AIDS prevention educators need to attend to the special needs of this overlooked population.     

Communalization and Homophile Organization Membership:

This paper applies a sociological perspective to homophile organizational membership in the pre- and post-Stonewall gay community, and now, during AIDS. Focus is on comparing early theories of gay community organizational participation with the genesis, nature, and meaning of gay/AIDS volunteerism as a political statement. By emphasizing how the communalization of AIDS empowered gay people, earlier homophobic vocabularies of analysis are replaced with those that recognize gay pride as the source of organizational membership. Today, self-acceptance by gays leads to the willingness to “bear witness” to People with AIDS in voluntary community based initiatives which join the personal and collective interest in a way that confirms a positive homosexual identity. The theory that communalization empowers by undermining homophobia is supported by data taken for a survey of volunteers at Gay Men's Health Crisis in New York.     

Lesbian Blood Drives as Community-Building Activism in the 1980s

As gay men began voluntarily withdrawing from blood donation in the early 1980s, lesbians in community with gay men in several U.S. cities organized drives to replenish the blood supply. These drives were sometimes the continuation of previously established drives by gay–lesbian organizations or faith communities, sometimes new initiatives in response to HIV/AIDS. However, after the initial publicity, mention of lesbian blood drives in print is both scarce and brief. Focusing on drives organized from 1983 to 1992 by a group known as San Diego Blood Sisters, this article is an initial step in documenting lesbian blood drives to inform and enrich conversations about histories of responses to HIV/AIDS, theoretical discussions of how community connections in the lesbian, gay, bisexual, transgender, and queer spectrum are enacted and understood, and emerging research on intersections of gender and sexuality as they are expressed through blood donorship.     

Sexual Behavior Changes as a Result of a Concern About AIDS:

This survey assessed the impact of a concern about acquiring AIDS upon the thinking and sexual behavior of persons of different sexual orientations and gender in 1986. A questionnaire assessing sexual behavior changes over time was administered to both gay and heterosexual bar patrons in Greenwich Village, New York. Among individuals, concern about AIDS had affected the sexual behavior of almost all gay men, a majority of gay women, over half of heterosexual women, but only a quarter of heterosexual men. Across all the groups, the most frequent behavioral response involved the elimination or decrease of casual sex and the ascertaining of sexual histories. Only gay men were using condoms to any appreciable degree. This study occurred before the Surgeon General's report recommending condoms appeared. A follow-up study assessing sexual behavior changes since then is underway.     

Walking the Tightrope:

In societies where homosexuality is legally proscribed, gays and lesbians rely on private and informal networks for mutual self-help, information dissemination, sociability, and the sharing of gay goods. This is particularly the case in Singapore where an authoritarian and paternalistic state is actively involved in the marriage and procreation of its citizens, and is hostile to homosexuality. In the era of AIDS, a new social movement has developed in ways that de jure seek to educate the public about AIDS but de facto serve the needs of the larger gay community. The dual roles of Action For AIDS are fraught with tensions, ambivalence and problems, but represent a strategic response to the social and political conditions in which the organization is located.     

An appointment with god: AIDS, place, and spirituality

This article describes how an African American gay man living with AIDS used his spiritual, religious, and cultural strengths to resist internalized dislocation because of heterosexism and homophobia. He was able to experience a relocation of God from places that rejected him to places that were conducive to his healing. By using these strengths, he was able to reject his physician's prediction of death and to call on God in response to an end-stage AIDS crisis. The development of spiritual agency is addressed.     

Context is Everything

SUMMARY

As we approach the third decade of AIDS, HIV prevention in the United States confronts expanding public concern about continuing infections among gay men. This paper provides a brief history of HIV prevention efforts among gay men in the United States, as well as a succinct analysis of its successes and failures. By focusing on lessons learned from work in the 1980s-as well as lessons which have not yet' been learned-the author suggests future directions in HIVprevention for gay men which emphasize critical analysis of epidemiological trends, and countering the merging of gay identity with HIV infection. Supporting men to gain greater authority and responsibility¹ for their sexual community-building and redevelopment is necessary for lowering the infection rate among successive generations of gay men.     

Sexual Behavior Changes Among Heterosexual,Lesbian and Gay Bar Patrons as Assessed by Questionnaire Over an 18-Month Period

Both an original and a follow-up questionnaire study of bar patrons in Greenwich Village, New York, ascertained concern about acquiring AIDS and resultant sexual behavioral changes. In 1986 (shortly before the Koop report), almost all of the gay men sampled, a majority of the lesbian and heterosexual women, but less than a quarter of the heterosexual men reported that a concern about AIDS had affected their sexual behavior. By 1987/88, almost all of the gay men and about 80% of heterosexual men, women and lesbians reported a sexual behavior change. The greatest specific behavioral changes between the studies involved increasing reports of declining casual sex (for all groups except the gay men, more than half of whom had reported this by the first study), and a greatly increased use of condoms by heterosexuals (who had rarely used them earlier) and by gay men (who had begun using them by 1986). Variables which predict heterosexual condom use for each gender are reported.     

Tita Aida and Emerging Communities of Gay Men:

This article describes and analyzes the development of two gay men's organizations in Metro Manila, the Philippines. The members, who are predominantly salaried professionals, represent an emerging subculture among "men who have sex with men," self-identifying as gay. The HIV/AIDS epidemic, while eliciting different responses from the two organizations, is described as pivotal in challenging the groups' ethos about sexual identity, behavioral change, and community organizing. The potentials, as well as limitations, for further development of these groups are discussed.     

Stories of AIDS: The use of narrative as an approach to understanding in an AIDS support group

This paper shows how the co-creation and telling of narratives helped members of an AIDS support group transform their unique and separate experiences of suffering into shared insights, intense connections and comfort. Examples of narratives are drawn from the author's experience as a co-leader of a support group for gay men living with AIDS. Current literature on group work with persons living with AIDS is embedded in a modernist orientation in which the therapist is the scientist/expert, the client has the problem and the therapist helps the client's through exploring and interpreting the client's story according to a superseding theory (Gergen and Kaye, 1992). This approach emphasizes the need for leaders to maintain objectivity and emotional distance to avoid burnout (Gabriel, 1991; Grossman and Silverstein, 1993; Tunnell, 1991). In contrast, in a post-modern therapeutic approach, there is no privileging of the therapist's narrative and the traditional hierarchical relationship is replaced by a mutual effort as therapist and client together develop stories that translate and transcend experience. Using the AIDS work as illustration, this paper offers a post-modern, narrative approach to group work and shows how persons living with AIDS can use narrative to move beyond finite structures and the limits of life.This paper couldn't have been written without the help of the group members and my co-leader Sally Bowie. I want to thank them and other friends and colleagues-particularly the members of my Philosophy Study Group for their suggestions and support.The paper is dedicated to the memory of Jack, Paul, Mark, Alex, Richard, Hugh, Stan, Tim, Michael and Bill—all members of the group who have died and to Dean who, though not a member of the group, also died of AIDS and like the others—taught me much about dignity and courage, about being gay and about living with AIDS.     

Will It Be Silence and Violence or Safety and Prevention for the Next Generation of Gay Youth?

Rates of unprotected anal intercourse and HIV infection are alarmingly high among young gay males. This second wave of infection indicates that traditional models for AIDS education are not working. AIDS educators need to rethink HIV-prevention efforts. Studies consistently find a high level of knowledge about HIV transmission and high levels of commitment to safer sex among gay males, but what accounts for the breakdown between safer sex intentions and practices among them? This article employs social constructionist and queer theoretical assertions that sexuality is socially and culturally produced in complicated and pluralist ways. The analysis examines how risky sexual situations shape young gay males' sexualities by exploring two examples selected to represent, alternatively, models of safer sexual and unsafe sexual trajectories. Implications for HIV prevention practices and policies are discussed.     

Living with the stigma of AIDS

This article uses interview data to explore how 23 gay and bisexual men who had AIDS were affected by and managed stigma. The article describes how stigma affects the relationships of persons with AIDS to their families, friends, lovers, colleagues, and health care providers. It explores how persons with AIDS avoid or reduce stigma by concealing their illnesses, learning when and to whom they should reveal their illnesses, changing their social networks, educating others about AIDS, developing nonstigmatizing theories of illness causation, and using bravado to convince others that they are still functioning social beings.     

Not All Men,Situations, and Actions Are Equal

SUMMARY

Since 1985, annual surveys conducted in the French gay press show that gay men in France have made considerable changes in their sexual behavior due to the AIDS epidemic. However, risky behavior still occurs. In this article, some ideas which have been assumed concerning residual risk among gay men are tested. The research questions were: (1) Should all unprotected acts of anal intercourse be considered risky? (2) Has a phenomenon of relapse really occurred among gay men in France? and, (3) Are risks only limited to men who are on the margin of the gay community? Before answering these questions, major landmarks in HIV prevention for gay men in France are reviewed. Then, on the basis of the results of the 1995 Gay Press Surrey, subjects' perception of the degree to which they are socially accepted, and the diversity of homosexual lifestyles are presented, finally, we describe how respondents have adjusted to HIV-risk at a time when there has been much talk about the re-emergence of risk behaviors and a resurgence of the AIDS epidemic among homosexual men.     

Chapter 6: Gay Latinos and AIDS:

AIDS education, prevention strategies, and support services for gay and bisexual Latinos have traditionally been inadequate, even though surveillance data demonstrate that the risk of contracting AIDS is two and one-half times greater for gay or bisexual Latino men than for their white counterparts. Language, culture, disproportionate poverty, and different definitions of gay or bisexual identity in Latino communities must be considered when addressing AIDS issues among Latino groups in the United States. It should not be assumed that outreach, education and prevention programs which may be appropriate for whites or African Americans will be appropriate for Latinos. This article offers a theoretical framework for developing a culturally-sensitive AIDS prevention program for gay and bisexual Latino men.     

HIV/AIDS Projects with and for Gay Men in Northern Thailand

Abstract

In this paper I look at three HIV/AIDS projects which were run by and for gay men, transsexuals and men who have sex with men (MSM) in northern Thailand in the early 1990s. These three projects were very different in format and in context, ranging from a rural village AIDS association to an urban drag beauty contest. The projects were located in settings as different as gay bars and cruising areas, shopping malls and rural villages. Aspects of the three Thai projects have important implications for those working in HIV/AIDS prevention and in the care and support of people living with HIV/AIDS (PLWHAs) across cultures, particularly in relation to education, outreach and counselling programs.     

Autocastration and autopenectomy in a patient with transsexualism and schizophrenia

Previous research focusing on changes in gay male sexual practices as a result of AIDS often avoids taking into consideration the meanings which sexual practices have within the gay community. As an alternative, the present study used a content‐analysis of personals advertisements within the personals section of The Village Voice to assess changes in the language gay men use to refer to their sexuality between the years 1978, 1982, 1985, and 1988. A significant increase in personals advertisements suggesting a concern with health is noted from 1982 to 1985. This increase continues from 1985 to 1988. Corresponding in time with these changes are increases in the number of personals advertisements which express a rejection of “stereotypical” presentations of self within the gay community. This rejection is seen as an attempt at self‐affirmation of characteristics perceived by gay men themselves as being desirable at particular historical moments. Implications for the basis of future policy interventions in reaction to AIDS are discussed. Finally, the utility of personals advertisement columns as an indicator of the meanings which people of various sexual preferences attach to their sexuality is discussed.     

Mending fences: selling AIDS drugs to the gay community

As more drug companies enter the fray with products to treat HIV and AIDS, competition could get fierce. Pharmaceutical marketers also have to overcome the disenchantment within the gay community regarding the medical establishment. They will have a better chance of success if they understand the history of AIDS and its relationship to the gay community.