Women, AIDS, and the Limits of Representation: Ethnography Between Language and Power

Crimp’s argument has important implications both for the study of science and for the ongoing debates about representation and postmodernity. First, it debunks the notion that science is somehow beyond representation. All too often science has been misconstrued as a pragmatic study of mere facts, and biomedical explanations of the epidemic have frequently been accorded a superior epistemic status based on this erroneous assumption. This view of science as unbiased and objective becomes untenable, however, when one considers the ”multiple ways in which our social constructions guide our vision of material reality” (Treichler 40). In other words, the ways in which we make meaning of the epidemic (as well as the world in general) is determined by what we know and what we believe. Therefore, even the most material aspects of AIDS—the ways in which AIDS is mapped onto human bodies in scientific accounts featuring viruses, antibodies, infections, or transmission routes—must be understood as elements of a particular kind of representation of AIDS—that of the scientist—rather than the ”reality” of the disease prior to its entry into the ideologically tainted realm of representation. The realization that no discourse is free of social construction has far-reaching consequences, for it not only means that neither science nor any other discourse has a special claim on the representation of reality, but that ultimately there is no way of knowing AIDS outside of representation.

Positing issues of representation as central to the cultural analysis of AIDS has significantly changed the way we used to think about these issues before the onset of the epidemic. As I have argued elsewhere, AIDS serves as a powerful reminder that representations inflect the real, because ”the meanings we attribute to AIDS shape the reality of living with AIDS” (Piontek 149). For instance, AIDS discourses, and in particular representations of people with HIV and AIDS, influence public attitudes, governmental policies, and decisions about research funding. AIDS discourses thus not only provide a kind of prism, which puts certain issues in sharper focus, they also give a new kind of urgency to the purely academic debates about the problems of ethnography and representation. Without being overly dramatic, it could be argued that, in the context of the epidemic, representation has become a matter of life and death, and cultural critics have been called upon to formulate an ethics or a politics of representation which reflects these high stakes.

The original misconception of the HIV epidemic in the U.S. and other Western nations as primarily affecting members of a ”deviant subgroup”—homosexual men—has had devastating consequences for women. For one thing, the definition of AIDS, adopted by the Centers for Disease Control (CDC) in 1982 was developed from observations of men and based on a male model of the human body. AIDS was subsequently diagnosed in a HIV-positive person when a predetermined set of so-called ”opportunistic infections” could be documented. Women, however, obviously differ biologically from men and are subject to unique organ-specific diseases and conditions. When they developed opportunistic infections in organs or orifices not present in the male body, women were not considered eligible for an actual AIDS diagnosis.

Thus the CDC’s narrow definition of AIDS rendered women invisible in the total statistical picture. As a consequence, women were excluded from treatment and the benefits and services provided to male PWAs (people with AIDS). Furthermore, women, like people of color, were habitually excluded from clinical trials of experimental drugs, and the unique aspects of HIV infection in women remained understudied, as did the problem of female to female transmission and the question of whether women with HIV infection die faster than men.

This neglect of the gender-specific issues of the epidemic in the field of science was mirrored in cultural studies of the epidemic. While the number of book-length studies on the effects of AIDS on gay men AIDS multiplied, similar accounts focusing on women remained few and far between. Even today, well into the second decade of the epidemic, one is not likely to find more than a handful of books dealing specifically with women and HIV in the AIDS or health section of a bookstore. This is particularly surprising considering the fact that the number of women with HIV and AIDS has risen dramatically, both in the U.S. and across the world. In this context, the recent publication of two books dealing with women and AIDS—one an interview study, the other a book of photographs and interviews—marks an addition to the canon of AIDS writing that is very welcome indeed.

For several years Patti Lather and Chris Smithies observed and chronicled support groups for women diagnosed with HIV in four major cities in Ohio. In Troubling the Angels Women Living with HIV/AIDS (Westview/Harper, 1997) these women describe with great poignancy how HIV/AIDS affects their lives, how they fight the disease, accept, reflect, live and die with and in it. A Positive Life: Portraits of Women Living with HIV (Running, 1997) combines Mary Berridge’s compelling photographs of 30 women between the ages of 25 and 48 with copy gathered from interviews conducted by River Huston, in which the women relate the emotional and physical struggles of life with HIV. Thus, both texts are characterized by their desire to give voice to the voiceless. Understandably, the desire to render visible the lives of people with HIV and AIDS is particularly strong where it concerns women, precisely because their neglect has had such devastating consequences in the past. However, there is much more at stake here than merely replacing invisibility with visibility. In fact, I want to suggest that the strategies these two texts employ to reach their stated objective can be read as a commentary on issues of representation and ethnography with/in the postmodern

Playing on the double meaning of ”positive,” A Positive Life emphasizes the fact that the subjectivity of the women portrayed here exceeds their disease. In fact, what all of the women in A Positive Life have in common is their conviction that their lives are good, in spite of—or, in some cases, because of—their being positive. The book’s subtitle, Portraits of Women Living with HIV , places it in a tradition of photojournalism dealing with AIDS, a tradition which includes, for example, Carolyn Jones’ L iving Proof: Courage in the Face of AIDS (1994) and Sal Lopes’ Living with AIDS (1994). ” Living,” the operative word in the titles of these books, contradicts the focus on death and dying in the photographs of Solomon and others. Berridge and Huston present a counterdiscourse to the representation of PWAs as passive and doomed victims, which was the dominant discourse for most of the 1980s. Always dignified, sometimes pensive, frequently defiant, and at times sexy, the women portrayed in A Positive Life look nothing like victims.

Refusing the victim label, however, is not to deny the fact that women with HIV do at times suffer physical and emotional problems. In fact, the women in A Positive Life speak with great frankness about their health problems. Besides the women’s candor, one also notices the surprising similarity among their stories—a point that I will return to in a moment. For the time being, I would like to focus on some of the differences between the women, differences that are perhaps thrown into stronger relief by the overwhelming sense of similarity that otherwise characterizes them. Discrepancies in the women’s stories are particularly noticeable when, as in the following example, the women use very similar language to describe their vastly different experiences. Thus, Julie Evenson (”34, HIV-positive since 1989 or earlier, diagnosed in January 1994, infected through sex”) maintains

The bottom line is you never feel good. Some days are good compared to the bad days but those good days are few and far between. (97)

Conversely, Karri Stokeley (”30, diagnosed HIV-positive in June 1996, unsure of transmission”) declares:

I feel a lot better. Before I had had bad days and really, really bad days; and now I have some good days and bad days (49)

On the one hand, the discrepancy among these two accounts is hardly surprising given the number of women portrayed here and the differences between them. On the other hand, of course, the women’s widely divergent accounts of living with HIV are significant for the ways in which they challenge common assumptions about a linear and uniform progression of the infection in all women.

In this context it is interesting to note that several of the women reject the notion that people with HIV must be somehow physically marked by the virus. April Drew (”29, diagnosed HIV-positive in 1989, infected through sex”), for example, has had numerous opportunistic infections, including PCP pneumonia. Living with a dangerously low T-cell count of 15 and a diagnosis of cervical dysplasia at the time of the interview, Drew relates how she is frequently confronted with people who think she looks too healthy to be so sick:

People never believe that I’m sick. Everyone says, ”You look so good, so healthy.” They think if you’re not wasted, you’re not sick. I really hate when people say that I look so good, like, ”It’s okay, she looks good,” and they can dismiss you as not really being sick. They feel better. In reality, I will probably look good till I’m dead. I can see everyone at my funeral saying, But she looked so good.” (29)

To be sure, PWAs today, for the most part, suffer different kinds of opportunistic infections than those most common in the early years of the epidemic. Importantly, the infections that most often afflict people living with AIDS nowadays tend to be less disfiguring than the lesions of Karposi’s Sarcoma. Drew’s experience, therefore, is indicative of the ways in which the ”face of AIDS” has changed over time. More importantly, perhaps, her words defy any simplistic attempts to read female bodies—or male bodies, for that matter—as visual representations of disease. Perhaps Alicia McWilliams (”36, HIV-positive since 1988, diagnosed 1991, infected through unprotected sex”), who is asymptomatic and in good health, drives home the point most forcefully when she declares: ”I’m a good looking sister—just because I’m positive doesn’t mean that I need to look like death warmed over” (16). Clearly, the women in A Positive Life are not ”moribund AIDS patients” ”doomed to die.” On the contrary, the emphasis on living with HIV/AIDS. challenges naïve assumptions about the infection and its progression. Most importantly, however, it discredits the notion that HIV = AIDS = Death.

A Positive Life also debunks a number of other myths about AIDS and HIV infection, which, in spite of evidence to the contrary, have persisted throughout the epidemic. In a way, the book is almost didactic, in the sense that it helps to demolish some of the most pernicious myths about who is and who isn’t at risk for AIDS. Thus ”Bunny” (”44, diagnosed HIV-positive since December 18, 1990, infected through unprotected sex”) relates that one of the reasons she became an AIDS educator was the fact that ”I didn’t fit any category that people believe are at risk. I wasn’t a homosexual, I didn’t have a lot of lovers, and I never used drugs. I want people to know you can be straight and wind up with this infection.” (21) Her words are echoed by April Drew, who explains: ”I got this through sex. I tell people, because so many people still do not believe that they can get this thing, especially women. I had to learn the hard way, so anytime I get a chance I try to squeeze in a little lesson about sex.” (31) Like Drew, Tammy Brisco (”26, diagnosed HIV-positive in 1994, infected through sex”) recognizes that sharing her story with others will likely have a greater impact on their awareness than any abstract statistics: ”I have joined the Speaker’s Bureau. I travel all over and speak to people about my experience. I think people identify with me. They can see HIV is not just a gay-man or drug-users disease.” (105).

Along similar lines, Patsy Stewart (”43, HIV-positive since 1988, diagnosed in April 1993, infected through sex”) challenges the continued lack of attention paid to women in public health campaigns. She explains:

I don’t blame anyone. It was my own responsibility. I should have used protection, even though at the time I was infected there was no talk of women getting AIDS. We were the silent population becoming infected. That makes me mad. I think they should have targeted regular programming on TV. Even now they don’t do enough. It’s always younger people—never people 35 and up. People my age don’t feel they have anything to worry about. (80)

Stewart’s analysis of her experience demonstrates how in the American popular imaginary sex is all too often equated with youth. As ridiculous as it may be, this cultural myth has nonetheless had a significant impact on safer sex education. Until quite recently public service announcements concerning safer sex, for instance, have almost exclusively been geared towards younger people, giving ”people 35 and up” a false sense of security by suggesting to them that they are not at risk for HIV.

The pictures in A Positive Life deliberately counter an earlier tradition of AIDS photography, which presented people with HIV as lonely and disconnected, cut off from life. Almost two thirds of the 30 images represent the women surrounded by their children or other family members. The composition of the images is significant, for it confronts the myth of the inevitable isolation of the PWA. More importantly perhaps, this characteristic of the images also calls our attention to the facts that for women in particular HIV has always been a family disease, and that statistically most women with AIDS are mothers (Walker 166; 165). In an essay entitled ”Mothers and Children,” AIDS activist Judith Walker reminds us of the ”painful reality” behind these statistics. For the mother, Walker argues, the stigma of AIDS ”frequently means rejection by friends, mate, or family. If she has an HIV-positive child, it can mean being treated as if she is solely responsible for her child’s illness (as if men did not play a role in HIV transmission)” (171). This notion has lead health care providers, politicians, and institution such as the CDC to suggest drastic measures to curb the perinatal (mother-to-baby) transmission of the virus, measures including routine HIV testing in prenatal clinics, forced abortions, and compulsory sterilization of HIV-positive women. As Risa Denenberg and others have argued, these misguided suggestions need to be viewed in the context of a ”history of coercive policies and laws regarding reproduction” (160). Like abortion laws, for instance, the suggested AIDS policies are characterized by a pronounced disregard for the woman’s well-being and the peculiar way in which they value fetus over woman.

Whereas HIV-positive women have frequently been represented as asexual or desxualized beings in the past, A Positive Life challenges the notion that women lose their right to sexual expression and self-determination once they have been diagnosed with HIV. A great number of the women with HIV in this book are represented as sexually active, and quite a few of them as loving and competent mothers. Thus the picture of Tracie Edness-Etheredge (”38, HIV-positive since 1989, diagnosed in 1991, infected through sex”) shows her in a beautiful white lace wedding dress, proud with her head held high, surrounded by at least a dozen children of different ages. From the written text we learn that, even after her diagnosis, Edness-Etheredge, a single mother, insisted on fulfilling her dream of a white wedding with the same kind of vehemence with which she now insists on being sexual and on practicing safer sex with her husband. ”Condoms don’t stop anything really,” she declares firmly, except bodily fluids” (75). Safer sex may have been difficult to integrate into the honeymoon romance, she admits, but nonetheless sexuality is an integral part of this woman’s positive life.

There are other images in A Positive Life , however, in which the women’s being surrounded by children seems to have quite different connotations, images which, in fact, at times seem to perpetuate cultural myths that are both disturbing and dangerous—a fact which comes as somewhat of a surprise given the myriad ways in which this book otherwise challenges some of the myths and assumptions which influence our ways of making meaning of the epidemic. Take, for example, the myth of woman as the selfless caregiver and the caretaker of the family. In the context of the AIDS epidemic this cultural myth has played itself out both on the social and on the individual level. Even when AIDS was still considered primarily a gay disease, women—both lesbian and straight—joined AIDS activist groups and volunteered for gay male dominated AIDS service organizations in numbers far greater than men are ever likely to lend their support to a specifically female health issue, say, for example, breast cancer activism. At the same time, heterosexual women frequently have found themselves taking care of partners, spouses and children living with HIV, even if they themselves had been infected or sick. On the one hand, this lopsided distribution of labor is emblematic of the ways in which, within the patriarchal structure of the nuclear family, the needs of the wife/mother usually take a back seat to those of the other members of the family. On the other hand, it also illustrates one particular way in which HIV infection ”tends to worsen already existing forms of inequality and oppression” based on gender and other categories of difference (Christensen 5).

Given this particular background, it certainly is surprising that a book dedicated to the lives of women with HIV would play into some of the most damaging of gender stereotypes. Consider the following examples. The one page of text that constitutes the story of Nilsa Ramos ”Cookie” (”40, HIV-positive since 1982, diagnosed in 1987, unsure of how she was infected”) is juxtaposed with a photograph in which two blurred female images—one of whom, we assume, is ”Cookie”—flank Josh, Ramos’ son, in focus in the very center of the picture and looking straight into the camera. Are we to suppose that Josh dominates this image just his mother’s concern for his wellbeing dominates her thoughts? The picture of Alicia Williams seems to tell a similar story. In this photograph a woman’s back—we assume it is that of McWilliams—can only be seen through an open door on the very right margin of the image, while her nephew occupies the center of the photograph. While in both of these cases, the woman supposedly represented is marginalized by a male child for whom she has acted as caregiver, the implied logic of substitution is taken to extremes in the case of Adriana Rivera. Facing her story is a picture of her two granddaughters stretched out on a bed, underneath a picture of two young children with a caption that reads ”We Love Mom,” looking directly into the camera. While in the previous two pictures, the women were marginalized by those they care for; Rivera has actually been replaced by them.

Perhaps the pictures I have described are the result of difficult negotiations between the photographer and her subjects. Thus it could be argued that the kind of replacement I have been critiquing here constitutes an attempt to protect the women’s identities, allowing them to participate in the project without being exposed to the discrimination they might have to endure if their faces became public. However, there is no indication of such concerns anywhere in the book, no record of how the women and the author negotiated the space of the photograph. Thus one is left with the jarring discrepancy between the name on the page—promising a representation of Adriana Rivera—and the absence of her person in the photograph—failing to deliver on that promise. Consequently, one cannot help but be reminded of the dangers inherent in the doctrine that mothers (are supposed to) live vicariously through their children and their children’s children. This logic of substitution erases Rivera altogether, her self-sacrifice literally making her a nonentity.

As we ponder the implications of this kind of erasure, it is crucial to remember that, although some of them have a snapshot quality about them, the photographs in A Positive Life have either been carefully staged in order to tell a particular story or selected over other shots from the same session because of the particular story they can be made to tell. What we are left with, then is the contradiction between the stated purpose of the book—to make visible the lives of women with HIV—and a number of photographs which participate in an economy of representation that ultimately renders them invisible.

We encounter another, equally puzzling contradiction as we begin to analyze the context in which the images in A Positive Life are placed, i.e. the written text that frames the visual images. To begin with, let’s consider the attributions following the women’s names (which I have thus far quoted parenthetically following the women’s names), consisting of their age, information about when they were diagnosed and/or how long they have been infected and, last but by no means least, how they were infected. Berridge and Huston distinguish six different sources of transmission, ”blood transfusion”, ”unknown”/”unsure”, ”IV drugs”, ”IV drugs or sex”, ”sex” and ”unprotected sex”. It is these last two categories in particular that I find confusing. Is ”sex” merely shorthand for ”unprotected sex”? Are these two classifications simply variations of one and the same category, an inconsistency that slipped by the editor’s red pen? Should this not be the case, the differentiation between ”sex” and ”unprotected sex” would imply that at least 21 of the 30 women were infected through ”sex”, which because it has not specifically labeled otherwise, must be classified as ”protected sex”. Consequently, this implied distinction begs the question how such a relatively high number of women could have been infected even though they apparently practiced safer sex—a question not addressed anywhere in the pages of A Positive Life .

More importantly, however, we need to ask why Berridge and Huston saw fit to provide readers with information about the women’s source of infection in the first place. Interestingly, a number of the women interviewed expressly reject a classification of people with HIV according to the way in which they were infected. Thus Meredith (”41, diagnosed HIV-positive in 1985, source of transmission unknown”) insists: ”I had a blood transfusion twice. I was an intravenous drug user and I was promiscuous, I don’t know how I was infected. It doesn’t really matter .” (41; emphasis added) Along similar lines, Beatrice (”39, diagnosed HIV-positive in 1992, infected through sex”) explains that, although she is convinced that she was infected through sex with her boyfriend she knows in her ”heart of hearts it doesn’t matter who gave it to; it’s done.” (10; emphasis added).

The issue, however, goes beyond mere personal preferences. Recent history has taught us that, in the context of HIV, information about the source of transmission has frequently shaped attitudes towards PWAs. Here is how Karri Stokeley explains the phenomenon:

I understand people are interested in how I was infected. It helps them form opinions on you. We need to put labels on people according to how they look or who we think they are and how they conduct their lives. People decide if you’re worthy of their empathy depending on how you were infected. It’s really judgmental. Like you deserve it if you slept with 50 men, but you’re an innocent if it was only one. People have turned it into a moral issue. When it comes right down to it, it really doesn’t matter. In reality it’s a deadly disease that doesn’t discriminate. (44)

It certainly seems problematic to assume that the way a person was infected could provide us with the ”key” to a person’s life. All too often knowledge about how a person was infected has been used in order to determine whether or not they are ”responsible” for their infection. It is surprising indeed that a feminist project seeking to empower women living with HIV should insist on this dubious kind of labeling, which PWAs and their organizations have been fighting against for over a decade.

In her introduction to A Positive Life , Huston acknowledges that fear of the discrimination they and their families would face if their stories became public kept many of the women interviewed by her from allowing their words from being published in the volume. Huston expresses her hopes for a brighter future: ”May there be another day, another book, another wholly accepting public forum in which these women can tell their stories without fear.” (1) A Positive Life , however may hinder rather than help the development towards the kind of future she projects, for it may unwittingly help perpetuate not only the dangerous and damaging distinction between ”innocent victims,” those infected through blood transfusions or in utero on the one hand, and those who supposedly brought it on themselves by contracting the virus through sex or IV drug use on the other, but also the distinction between ”us” and ”them”, those who are at risk for HIV because of their ”lifestyle,” and those who merely read about it in books.

Troubling the Angels is very much informed by an awareness of the kinds of binaries that tend to influence our thinking about HIV/AIDS. At the very beginning of the book Lather and Smithies acknowledge that the ”subject of AIDS is as much about categories of inside/out, us/them, innocence/guilt, as it about viruses and health care needs”. Consequently, the co-authors tell us, they felt compelled to put together a book that is ”not so much a story about ‘some others’ as a story of how AIDS shapes our everyday lives, whether we be ”positives” or ”negatives” in terms of HIV status” (xiv). This kind of consciousness, it seems, has had a noticeable impact on their methodology, as evidenced by the kind of book they have produced.

Troubling the Angels grew out of interviews conducted from 1992 to 1995 with 25 women in HIV/AIDS support groups in Columbus, Cleveland, Cincinnati, and Dayton. As is not uncommon in recent ethnographic work, Lather and Smithies also met with the women outside of this specific context, at holiday and birthday parties, camping trips, retreats, hospital rooms, funerals, baby showers, and picnics. After numerous consultations with the women and spurred by their impatience—”Where’s the book? Some of us are on deadline, you know!”—the researchers decided to desktop publish an early version, thus getting the text to the women in a preliminary form while working to secure a book contract (xx). The epilogue of the revised book contains the women’s reactions to the earlier version as well as an update on them and their support groups.

The book begins with two prefaces, the first introducing the book and the second the women, many of whom have written their own introductions. The heart of the book consists of five sections, clusters of stories organized around such topics as ”Life after Diagnosis,” ”Relationships” and ”Living/Dying with AIDS.” The stories narrate the day-to-day realities of living with AIDS and trace patterns and changes in the ways these women have made meaning of HIV/AIDS in their lives. The individual stories were transcribed from support group meetings and their poignant titles chosen from the words of the women, for example, ” I’d Probably Be Dead If It Wasn’t for HIV” and ”It’s Taken Me Years to Get Here,” the latter referring to a local support group. Each story series is followed by intertexts on angels, which chronicle the social and cultural issues raised by AIDS. As the authors explain, ”the angels of the intertexts are intended to serve as ”both bridges and breathers as they take the reader on a journey that troubles any easy sense of what AIDS means” (xvii). Across the bottom of most of the over two hundred pages, Lather and Smithies provide a running commentary on their experience as co-researchers, research methods and theoretical frameworks. Scattered throughout the book are some of the women’s own writings—poems, speeches, letters, and e-mail—angel images—ranging from the work Paul Klee to that of contemporary artists—as well as what the authors refer to as ”factoid” boxes—containing information on such things as the worldwide demographics of HIV/AIDS, gynecological signs of HIV infection in women, and suggestions for further reading. The book concludes with an appendix including demographic data on the women as well as a list of references and resources.

As the above list suggests and the elaborate page layout attests, Lather and Smithies gather a complex and complicated representation of women with HIV/AIDS in Troubling the Angels . However, the result is not, as one might perhaps suspect, planned confusion, but rather what Marcus calls a ”messy text” (567-68; passim). As Lather and Smithies explain in the preface, there simply was no other way for them to put the book together, because they no longer felt confident of the ”ability/warrant to tell such stories in uncomplicated, non-messy ways" (xvi). In important ways, their doubts about the possibility to tell a straightforward story set them apart from Berridge and Huston and other authors who do not seem to share these reservations. As the comparison of these two books illustrates, this discrepancy concerning the (im)possibility of creating transparent, self-evident representations has important implications for the methodology and ethics of writing about women with HIV. Let’s take a closer look at the theoretical underpinnings of the different positions exemplified by the two books.

Interview studies of people with HIV/AIDS have traditionally fallen into one of two categories. Researchers either analyze and explicate (samples of) the field research they present in their studies or they assume that the interviews—and hence the people who were interviewed—”speak for themselves.” In the first case researchers assume the role of the ”expert”, explaining to the reader what the words of their research subjects ”really mean.” Researchers who forgo the meta-level of explication, on the other hand, generally seek to eliminate themselves from the text altogether.

A Positive Life follows the latter format. As we learn from the introduction, the copy accompanying each photograph is a distillation of interviews Huston conducted with the women photographed by Berridge. Apart from their names on the cover, however, and a preface by one and an introduction by the other, the two authors are not present anywhere in the pages of their book—at least not directly. Their presence can only be detected in a rather more oblique way in the text, which while it purports to be a self-evident, transparent representation of the women’s words reveals itself to be carefully crafted construct. Thus, at first glance, the relative similarity of the women’s stories, the way their narratives seem to invariably focus on certain topics—how they learned that they were HIV-positive, how they cope with the infection in their everyday lives, how the diagnosis has changed their lives, and their hopes and expectations for the future—seems to suggest that, in spite of the differences between the women, their experience of living with HIV is surprisingly similar. Eventually, however, one comes to realize that these similarities may have more to do with the absentee authors than with the women portrayed. The format of the book erases all traces of the interview format and omits the list of questions, which prompted the surprisingly similar responses that now constitute the women’s ”stories.”

It certainly seems problematic to assume that we can know the stories of people with HIV—let alone that these stories can be summed up in one to five pages of text. To be sure, A Positive Life attempts to counteract the invisibility of women in the AIDS epidemic. However, as Karmala Visweswaran so persuasively argues in Fictions of Feminist Ethnography (1994), the fantasy of ”feminist innocence where sisterhood or solidarity prevails automatically” cannot be sustained in the face of the ”power, complicity, violation of boundaries, and betrayal” inherent in ethnographic representation (76). Thus the feminist researcher is caught in a bind. Because ”cultural interpretation is power-laden and involves more than translation or brokering” (Visweswaran 76), doing ethnographic work on women inevitably means doing violence to those the ethnographer seeks to empower. A Positive Life , however, skirts these difficult issues in its presumption of automatic sisterhood. Thus River Huston writes in her introduction:

I believe in the truth of these voices, and trust they have something to teach us about what it is like to be a woman living in the late-twentieth [sic] century with a disease that provokes anger, hatred, and denial, yet somehow inspires in us equal measures of compassion, faith, and humanity. The book sets out to document such extremes in the hope of moving all of us towards a response to this epidemic that we can look back as honorable. (1)

Contrary to what Huston seems to suggest in this passage, just what constitutes an adequate and ”honorable” response to the women’s stories—and to AIDS in general—is, of course, a matter of considerable debate. Huston is more specific about her intentions in an interview with National Public Radio’s Jacki Lyden. She explains that one of the reasons that impelled her to co-author A Positive Life was the fact that people with AIDS are frequently put ”in another category, separate, so the people could feel sorry or have pity, or empathy, but they could definitely say it wasn’t ‘me.’ And I wanted to say: ‘it’s you.’” Huston seeks not to duplicate the kind of ”otherizing” to which she herself has been subjected in the past. However, the co-authors methodology and the resulting format of the book seem to thwart these intentions. The book’s failure to confront the dilemma of feminist ethnography, coupled with the lack of any kind of social, historical, or theoretical context in which to place the women’s individual stories severely limits the volume. In the end, A Positive Life merely rehearses what Deborah Britzman calls a ”too easy to tell” tale (13), delivering the women to the reader in a linear, tidy narrative, which in a paradoxical move, renders the women ”other” and ”the same” simultaneously, and invites easy identifications as well as the reader's empathy.

Empathy can be counted among what Rachel Baum, in an essay on Holocaust education, calls the ”obligatory emotions,” the emotions that ”we are expected to exhibit towards others, and that help make us good members of a community” (49). While affirming its potentially positive force, Baum argues that empathy—in and of itself—does not necessarily produce ethical or political action. In fact, Baum maintains, if empathy is not made productive, for example in the context of Holocaust pedagogy, it is more likely to result in melancholia or paralysis. In the end, A Positive Life leaves us with the illusion that we know the women we have encountered in its pages. By appealing to the reader’s ”compassion, faith, and humanity,” it helps perpetuate the romance of knowledge as cure, which seems particularly problematic in the context of AIDS.

So what can a feminist researcher do when faced with the dilemma of ethnographic representations? Does she simply shrug her shoulders and plough on ahead, in spite of whatever misgivings she may have about her project, or does she throw up her hands and just go home? In other words, how does one hold on to the idea of research that makes a difference in struggles for social change while working against the humanist romance of knowing? A possible answer to these puzzling questions can, I believe, be found in Troubling the Angels , which confronts the paradoxical situation of feminist ethnographic representation with/in the postmodern head on.

Lather and Smithies challenge the definition of the ethnographer as ”the one who knows” as well as the notion of an ”innocent” ethnographic realism. To begin, there is no absent author in Troubling the Angels . As they explain in the preface to their study, as feminists, they were particularly ”interested in working in participatory and collaborative ways, particularly in an area where efforts toward ‘knowing’ have often been intrusive and exploitative”: ”This is NOT a chronicle where we as researchers record events as unobtrusively as possible. The book is laid out so that, rather than only ”giving voice” to the stories of others, this is also a book about researchers both getting out of the way and getting in the way.” (xiv)

”Getting in the way,” means, among other things, that the co-authors of Troubling the Angels reserve the right to disagree with the women as well as with each other. Thus Lather, for instance, registers her unease with the religious construction of AIDS as a ”journey to God” as she listens to one of the women reading a poem at her final meeting with the support group. ”As I listen to the poem, I think of how, for me, God is an available discourse. For Holley, God is the Father she is ready to come home to.” Lather makes it quite clear that, while she acknowledges Holley’s right to her own way of making sense of her infection, she disagrees with this particular attribution of meaning. In spite of such disagreements, however, Lather emphasizes her solidarity with the women or what she calls ”Standing together, across such differences” (251), and the text of Holley’s poem constitutes the final words of the book, printed on its very last page.

Not surprisingly, making meaning of AIDS in their lives is also a central concern for the women in A Positive Life . Thus Nilsa Ramos ”Cookie”, a recovering alcoholic, maintains that ”In a funny way HIV is a blessing. I would be dead or a prostitute by now. I got my life together. I got my kids” (23). Ramos seems to express her gratitude for the infection, which she considers a saving grace. Her construction of HIV as an intervention into a troubled life is sharply rejected by other women, who refuse to conceive of the infection as a learning opportunity. Meredith, for instance, reports that she frequently tells her girlfriends that ”you don’t want to be in the place I’m in. I deal with this because I have to, but I would rather not be here” (43), and Kristine insists, ”I will not tell you that my life is so much better because of HIV. Believe me, I would be much happier without it. I might look at things deeper now, but I would be happier to be shallow and not have it.” (71) Huston agrees with the sentiments expressed by Meredith and Kristine, though one would not know it from reading A Positive Life . It is only in the NPR interview with Jacki Lyden, which I quoted above that she voices her objections to any attempt to put a positive spin on her HIV infection:

Lyden: Would you say that, for yourself, the experience of living with HIV is now one that you tend to view positively?

Huston: No, Never. Never.

Lyden: Good.

Huston: I—people say it’s a gift. I say where’s the return department. It is not a positive experience. . . . I would trade my dog to be negative. I would trade anything. I cannot describe to you what this is like and what it’s been like

No doubt, Huston’s determination not to raise these objections within the pages of the book was guided by her desire to make sure that, as she puts in the introduction, ”the voices of these women would be honored almost as if I was an oral ethnographer,” to simply ”let them tell them their stories” (1). This decision, however, raises the question of whether it would have detracted from the women’s stories had Huston decided to also add her voice to the collection of narratives presented in A Positive Life . This question seems all the more pertinent, if one takes into consideration that Huston herself was diagnosed HIV-positive in 1991, and thus has a contribution of her own to make to the project of documenting the lives of women with HIV. Furthermore, Huston’s self-prescribed silence vis-à-vis the women’s stories does not mean that her project is beyond the violation and manipulation that has traditionally marked ethnographic representation. Perhaps she merely wields a different, less obvious kind of power in her role as the omniscient editor of the women’s words.

Respect for the women’s words also guides Lather and Smithies in their approach to the stories they have collected in their fieldwork; this respect, however, manifests itself in a decidedly different methodology. In fact, the co-authors address their responsibility to the women who have told them their stories in both the horizontally split text and the angel intertexts. In the former, the women’s words are on the top of the page in regular font size, while the researcher’s narratives are at the bottom in a smaller font. Thus Lather and Smithies manage to give pride of place to the women’s words without masking their authorial presence. In fact, it could be argued that their presence creates a kind of temporal disturbance, pulling the reader’s attention in two different directions simultaneously, a textual strategy that breaks the realist frame and opens up new possibilities for the text thus created.

Lather and Smithies add to the women’s stories ”our stories of listening and then telling their stories” (xiii). They comment on the women’s narratives as well as their experience in gathering and digesting the ”data” for their study. Co-authoring a book has not obliterated the differences between them: Thus, Smithies writes, for instance, that ”Patti writes to expose and confound the complexities of HIV/AIDS; I write to make them more manageable. Ultimately, this book is a manifestation of both of us, and I believe, better for it” (219). This acknowledgement of their different approaches is part and parcel of their refusal to produce a user-friendly ”comfort text” by overlooking differences.

A second interruptive textual strategy is the insertion of the angel intertexts. In these intertexts Lather and Smithies use different discourses on angels in order to discuss the social and historical context of AIDS as well as their methodology and its theoretical underpinnings. Lather, for one, distinguishes her interest in angelology from the obsession with angelic creatures that we have been witnessing in the realm of popular culture for the past few years. She insists that

These are not the romantic ladies tripping around in nighties that are so popular right now. These are angels who trouble our sense that all is right with the world, that AIDS is something ”out there,” unrelated to each one of us, and from which we can afford to distance ourselves. (230)

The angels Lather conjures up in her meditations on the social historical, and theoretical issues raised by AIDS have very little to do with the Hallmark creatures she satirizes in the passage quoted above. These are the angels of Rilke, Valéry, and Laurie Anderson, Walter Benjamin’s Angel of History and Tony Kushner’s Angels in America .

Working both within and against disciplinary conventions, Lather and Smithies explore new methodological economies of responsibility and possibility. Guided by their desire ”to be of use” to the women whose stories they are telling, they grapple with the ethical and political implication of doing feminist ethnography with/in the postmodern. Getting in the way of the women’s stories through both the running commentary and the angel interchapters, Lather and Smithies manage to address issues around both confessional writing and the romance of voice. The result is an ”uncooperative text” that refuses mimetic desire and reader entitlement to know. It constructs a distance between the reader and the subject(s) of the research, producing a kind of gap between text and reader. Troubling the Angels marks the very ”threshold between what we know and what is beyond our knowing” (xiv).

Refusing the liberal embrace of empathy that reduces otherness to sameness, this book casts doubt on our capacity to know, precisely by pointing out the limits of representation, the limits of ”what can be said and known about the lives of others” (xiv). Rather than being paralyzed by this realization, however, Troubling the Angels actively searches for ways to overcome the impasse it creates. Lather and Smithies address the vexing question of how knowledge remains possible given the loss of innocence of feminist methodology and the realization of the limits of representation. Working the ruins of feminist ethnography, their study explores the very ground from which new practices of ethnographic representations may take shape.

Representing Women with HIV/AIDS:

Language and Power in Postmodern Ethnography