“The Story of My Life”: AIDS and ‘Autobiographical Occasions’

Abstract

Talk and ‘telling’ have assumed prominent roles in preventing HIV and promoting life with the disease at the start of the twenty-first century. Our concern in this paper is to show how social structures and circumstances shape the narrative productions of HIV positive patients whose lives are institutionally managed. We consider what ‘telling’ means when young women with few economic resources are encouraged or mandated to talk about themselves by case managers, researchers, therapists, welfare workers, and clinic staff. We organize our analysis around three such ‘autobiographical occasions’: disclosures to intimate partners prompted by agents of the state; employment opportunities in which women are hired to tell others about living with HIV as peer educators or outreach health workers; and research interviews. We argue that storylines about living with HIV have been laid down by powerful social actors whose illness experiences do not reflect those of many poor patients. These formulations constitute an ‘archive’ which organizes institutional practices and discourses. These matter not only because they provide patients with a language through which to render their actions meaningful, but because they shape the everyday experience of HIV outside the clinic, the welfare office, and the therapy session.

A trend in writing on personal narratives of illness is to valorize patient ‘voices’. These voices, often captured in clinic-based interviews, are taken to reveal ‘interior’ or authentic selves. By making certain experiences or ways of being visible, these narratives are thought to be “therapeutic and empowering” for individual ‘tellers’ (Frank 2000). They are also thought to perform the more public function of activating communities of listeners and creating new possibilities for living—for example, by inspiring and advancing various political projects or collective claims to citizenship (Plummer 1995). Personal narratives of illness are therefore also cast as heroic and emancipatory. Critics of this trend in narrative research and writing argue that particular types of concerns for ethics and advocacy, notably those emanating from liberal politics, have led narrative researchers to neglect the social structures and circumstances that shape the production of stories (Atkinson 1997). These critiques, which have been formulated by respected scholars and practitioners of narrative research, are not critiques of narrative per se. Rather, they are words of caution that urge researchers working with narratives to pay more attention to how relations of power enter into talk and ‘telling.’

Of particular relevance to the research we present in this paper is Robert Zussman’s (1996, 2000) call for attention to ‘autobiographical occasions,’ by which he means moments when narrators are encouraged or even mandated to produce extended accounts of themselves, such as when applying for jobs, providing a medical history, attending therapy sessions, or appearing in court. These narrations are not everyday presentations of selves but are stories told about lives (Riessman 2002; Zussman 2000). Our concern in this paper is with several different kinds of autobiographical occasions in which young women living with HIV or AIDS are prompted to talk about themselves or their lives with the disease. We organize our analysis around three such occasions: disclosures to intimate partners that are prompted by agents of the state; employment opportunities in which young women are hired by the clinic to tell others about living with HIV as peer educators or outreach health workers; and research interviews in which the young women are encouraged to talk about their lives and the management of their illness to inform public health programming. Attending to questions of power and its relation to narrative production is particularly apt in the context of our study because the women we worked with were young, had few economic resources, and were members of ethnic minority groups, reflecting the epidemiology of HIV and AIDS in the United States at the beginning of the twenty-first century (CDC 2005). Now that HIV in this country is beginning to be thought of as a long-term condition to be managed with medications and behavior change, knowing one’s status and telling others about it have become foundations for self care, public prevention and control efforts, and social advocacy. This is reflected in the latest HIV testing recommendations from the Centers for Disease Control and Prevention (CDC) that suggest that testing be routinely conducted for all patients between the ages of 13 and 64 unless they “opt-out” (Branson et al. 2006). Arguments for implementing routine opt-out testing rest on the assumptions, borne out in previous studies, that many people will accept testing when it is offered and will take steps to prevent transmitting the disease to others, including through self-disclosures, if they test positive (Holtgrave and Anderson 2004).

The concept of the autobiographical occasion orients our attention to particular moments in which institutionally-orchestrated ‘tellings’ take place. This is because the shaping of narratives is most visible in these encounters. However, in this paper we want to show how the discursive and ideological weight of social structures shapes not just narration in-the-moment, as the term autobiographical occasions might suggest, but rather young women’s everyday lives with HIV. We use ethnographic data to suggest that the institutional shaping that becomes visible in isolated interactions from which narratives can be plucked is not always fleeting. Following Foucault (1988) and others (Frank 2005; Nettleton 1996), it is important to consider the nature of the dialogic relationship when we are thinking about the effects of telling for a narrator. Some narratives are elicited as part of a process of surveillance, while others are drawn out in the context of what we might think of as more therapeutic relations, such as those that entail empathic listening (Rogers et al. 1967). In this paper we also show something of the specificity of the young women’s relationships with the different institutions and institutional actors they engage. They are not all of a kind. The adolescent medicine clinic, in particular, has a complex relationship with the young women. On the one hand, clinic staff are mandated to make reports to child protective services when the young women tell them about incidents that are potentially harmful to their children. In some states, clinic staff are also obligated to report new HIV infections to the state or to inform patients’ sexual partners of their risk of acquiring HIV if the patient has not done so herself. The young women were acutely aware that the clinic was a site of surveillance. On the other hand, clinic staff provided multiple forms of care for the young women, and often had close personal relationships with them. They celebrated the young women’s birthdays, displayed their photographs and those of their children at their desks, and provided formal and informal advice about school, romance, and legal problems. They were often described by the young women as ‘like family.’

Following Michel Trouillot (1995), one type of pressure on the narratives produced in such occasions is the narrative record. Trouillot argues that in relation to any event some narratives are more widely available, readily produced, and easily heard than others. This has to do with social and historical processes that result in the privileging of certain forms of knowledge that then accrete in ‘archives.’ The narratives that are entered into the archive can be accessed, used, and possibly further fixed, while other understandings ‘fall out’ of the accumulating record, thereby creating ‘silences.’ The dominant storylines about living with HIV, or other chronic illnesses, and what support groups, disclosure, or participation in education or advocacy programs mean and do for patients have been powerfully shaped by certain actors. These include medical and public health researchers, activists and advocacy organizations, and celebrities living with HIV. This is not to say that the narratives of powerful social actors are all the same; early in the epidemic, for instance, ACT UP and medical researchers laid down competing storylines (Gamson 1989). The point is rather that certain narratives become embedded in social relations and institutional processes which allow them to circulate broadly. These narratives may reflect the experiences of some patients with HIV and AIDS, but they do not fit those of many poor patients, who represent a growing proportion of those affected by the disease in the USA.

What initially drew our attention to this problem was our sense of the repeated disjuncture between how talk or telling worked in the women’s lives, across many different moments, and how it is imagined to work by the clinic, public health, and the broader public culture. For example, the clinics all sponsored support groups which were imagined to help patients by providing them with information about living with HIV and an environment in which they could talk openly to other young people with similar kinds of questions and concerns. In contemporary public culture, support groups are widely seen as a vehicle for helping patients to get information and social support, but also to deal with grief and loss. In the case of HIV and other chronic illnesses, this process is thought to entail moving through a series of stages from ‘denial’ to the acceptance of one’s diagnosis. Acceptance is assumed to facilitate the adoption of behavior change, including adherence to therapeutic regimens (Wright and Kirby 1999). While some public health studies provide empirical support for this assumption, the evidence is limited and the findings are inconsistent (Greenberg et al. 1996; Kalichman et al. 1996; Kelly et al. 1993). Many of the young women we worked with attended support groups for a brief period of time after they were diagnosed, but most stopped going to these meetings fairly quickly. Rather than finding ‘community’, solidarity, or support in the groups, the women expressed hesitations about engaging in the kind of talk required of them in this setting. They were concerned about other people ‘knowing their business,’ they found the groups depressing, and they did not want to talk about HIV and AIDS.

Dorothy Smith’s (1987) formulation of institutional ethnography as a methodology guides our analysis of the three autobiographical occasions that we describe in this paper. The entry point for institutional ethnography is from the everyday worlds of particular social actors (Campbell and Gregor 2002; Smith 1987)—in this case young women living with HIV. Autobiographical occasions are moments when these everyday worlds come into contact with institutional processes, practices, and discourses. These occasions can be mined to show how they shape the young women’s stories and subjectivities, not just in the moment but across time. They can also be used to show how the archive is constituted. What is of particular interest from our perspective is locating where some of the ‘silences’ might be, and working to expand the archive so that a greater range of narrative structures might be made available to patients living with HIV and AIDS.

The research project

The ethnographic material presented in this paper comes from fieldwork conducted over a three-year period as part of a large, multi-city research project on adolescent women with HIV and their engagement in clinical care.¹ The women who participated in the study were between the ages of 16 and 24 when we first met them, and had acquired HIV through sex. At the time they began the study, the young women were accessing adolescent medicine clinics in the Bronx, Miami, New Orleans, and Chicago. The clinics provide services primarily to low-income patients insured by Medicaid or Supplemental Security Income (SSI). For the larger study, survey data were gathered from approximately 200 HIV positive women, and from friends and family members that the young women nominated or named as members of their social networks. The young women and their friends and family members completed periodic computer-based surveys that included questions related to substance use, mental health, and social support. These were hypothesized to be related to the young women’s engagement in therapeutic activities. Data were gathered from the young women’s medical records about their engagement in care, such as whether they made it to scheduled clinic appointments or complied with therapeutic regimens. The ethnographic component of this study centered on a small sub-set of these women, approximately eight women in each city, and involved regular open-ended interviews with them. The objective of these interviews was also to better understand the issue of engagement in care, but in a much less structured way. The data we present in this paper come from this latter portion of the study.

Over the 3-year period, one of us (LL, the first author) conducted open-ended interviews with 33 young women, and worked intensively with about 20 of them. We initially conducted interviews in the clinics, but as time went on we began interviewing and spending time with the young women outside the clinic setting—in their homes, in restaurants, while shopping, or at places where they were working. We also attended birthday parties, holiday parties sponsored by the clinics, community events related to HIV, and a funeral for one of the women. The women determined where they wanted to meet us and who they introduced us to. In most cases, we met and interviewed family members and friends, and some family members and friends became regular interviewees. Rather than presenting the women with a standardized set of topics, the interviews were designed to be open-ended enough to allow them to narrate what they thought was important about their lives, particularly in relation to HIV, the clinic, and medications. On average, we met the women every 6 to 8 weeks, though some women were interviewed more frequently than others because of distance from the sites and our ability to maintain contact. Some of the women moved or changed telephone numbers frequently. The most dramatic example relating to the difficulties of maintaining contact was in New Orleans, where all of the women were displaced by Hurricane Katrina. In the aftermath, we conducted interviews in Houston, Texas, Jackson, Mississippi, and smaller towns in the Gulf region. Whenever it was possible we recorded the interviews, and all of the recorded interviews were transcribed.

Most of the young women had dropped out of high school and did not have a General Educational Development (GED) degree, though a few were taking college level courses or working toward associates’ degrees. Eligibility for entitlements varied from state to state (Scott 2006), but some of the women received food stamps, or cash or rental assistance. Getting jobs was difficult, and any income they reported led to reductions in the entitlements they received. Therefore, most of the jobs the women held were temporary, off-the-books, or low-wage ones, such as babysitting for relatives or working at McDonald’s. The ethnic and racial composition of the groups of women we interviewed varied by site, again reflecting who the poor are in these cities. In Miami, for example, the women were mostly first and second-generation immigrants from Cuba, Haiti, and other parts of the Caribbean, while in the Bronx the women were from Puerto Rico, the Dominican Republic, or were African-American.

Similar kinds of institutions and institutional actors figured prominently in the women’s lives across the study sites. Through the adolescent medicine clinics the women had regular contact with physicians and nurses, but also with social workers, therapists, and researchers who were conducting studies like the one we describe here. Through the clinic or other community-based social service organizations many of the women had access to support groups, parenting groups, GED classes or Job Corps programs. In some cases their participation in these activities was mandated; for instance, some of the young women were required by the state, through child protective services, to attend parenting or anger management classes. Most of the women had extensive contact with welfare and social services, including child protective services, foster care programs, and group homes. Through public programs or community-based organizations they were assigned case managers who helped them to access services like home aides, transportation assistance, or legal counsel. These entanglements were experienced by all of the young women we interviewed, though they took different forms in different cities, depending on how welfare and HIV-related service provision were organized.

Crystal, a pseudonym, is the protagonist in the autobiographical occasions we describe in this paper. She is African-American, and was 20 years old when we met her. Crystal had been referred to the adolescent medicine clinic for care when she was diagnosed with HIV at the age of 15. Her boyfriend Howie, who later became her husband, was also a regular interviewee. Although the material from interviews with the other young women is not presented in any detail in this paper for reasons of space, the patterns that we describe were patterns—they were not specific to Crystal’s experience. Some of the other women are briefly present when we make general statements, for instance about the young women’s relationship to clinic staff or their behavior vis-à-vis the interviews. More importantly, in the formulation of institutional ethnography given by Smith (1987), the focus is on showing how the everyday worlds of young women with HIV are organized by the institutional processes, practices, and discourses they come into contact with. The unit in such an analysis is not the individual, although, in Smith’s language, the individual serves as our point d’appui. Expanding the sample for us would therefore mean studying other types of autobiographical occasions that are experienced by Crystal and the other women in our study. It is the study of additional autobiographical occasions—rather than the proliferation of stories around a specific type of occasion—that we are advocating in this paper as a conceptual way of filling out the picture we present of what it means to be living with HIV as a poor, young woman in the USA today.

A long story: Disclosure, time, and narrative possibility

The ‘disclosure’ of a chronic illness like HIV is often depicted as a breakpoint that separates a ‘before’ from an ‘after.’ Disclosure is thought to be possible only when the patient has come to accept her diagnosis and is attempting to integrate the illness into her life (Kralik 2002). The physician and writer Abraham Verghese (1998, pp. 340–341) provides a typical formulation of how disclosure is imagined to function. In the excerpt from The Tennis Partner reproduced below, Verghese is describing the experience of one of his patients who initially disclosed that he was HIV positive in the context of a support group:

I have seen the same phenomenon in my HIV clinic: A newly diagnosed man feels his world has ended. Reluctantly, he joins a support group, all of whose members have the same diagnosis. It is at first reassuring, then uplifting, and enables him to shed his secrets, to be honest and open with himself and his family. And two years later, despite falling CD4 counts and the virus gaining ground, he tells me with some amazement that he has never felt more whole, more alive, never felt happier. As if it were his pre-HIV world that had been the fatal illness, now cured.

For the young women we worked with the experience of disclosure was radically different from what Verghese describes. They did not like to attend support groups where HIV was discussed and they were extremely careful about disclosing their HIV status. Many had not told their intimate partners or certain family members or friends about their diagnosis. When they did tell others, it was often because they were compelled to do so. Crystal’s experience is illustrative. She first told Howie that she had HIV roughly 1 month after they met. She did it on the second floor of the social services office where people with HIV and AIDS go to sign up for entitlements. Case managers assigned to this office help ‘clients’ apply for rental assistance, food stamps, and other services. Howie had accompanied Crystal to an appointment with her case manager because he was planning to move into her apartment. Crystal wanted Howie “put on [her] budget” so that she would be eligible for additional food stamps and cash assistance. This is how Crystal recounted her disclosure to Howie:

C:… So we was sitting in the waiting area, and I just…He was like…One thing about [this part of the social services office] is a lot of the people are from the shelter and things like that. They are really sick, or you could tell that they’re sick. There’s something wrong with a lot of them. A lot of them are junkies, and…So he’s sitting there. He’s like, “These people look like they got HIV. These people look sick.” Well, I told him, “What the hell do sick people look like? What do people that have these things look like?” Because I already knew I had it, so I was like, “What the hell does…? How can you tell if somebody has HIV? What the hell does that look like?” That’s what I said to him. He’s like, “Look at them. Something’s wrong with these people. They have AIDS or something”…because he’s stupid. So I’m looking at him like, “Really?” I’m like, “For real?” I said, “So what does a person with HIV look like?” He’s like, “That man right there, I bet you he’s got HIV. That one over there, I bet you she got HIV.” He’s pointing out these people. I’m like, “Really? So you can tell, right?” I said, “I have it. Can you tell that?” He’s like, “Stop playing with me. You play too much. You play too much.” He’s like, “Why you go and say that? Why would you say that?” I’m like, “You can’t tell? I thought you knew what a person with HIV looks like.”

Though the excerpt above might make Crystal’s disclosure appear spontaneous, it was not. Crystal’s case worker told her prior to this meeting that in order for Howie to be “put on her budget” he would have to know that she had HIV. He was required to read and to sign papers containing this information. Clinic staff in the different research sites also encouraged the young women to disclose their HIV status to their sex partners, but individual staff differed in how they approached this with patients. In some cases staff would remind patients of the disclosure laws or show them newspaper articles about people who had been arrested for failing to ‘tell.’² Staff might also offer to role play disclosure or encourage women to stage their disclosures at the clinic, where therapists and social workers were available to provide support and assistance. Indeed, from the social services office, Crystal took Howie to her grandmother’s apartment, where she continued to tell her story with inputs from family members. The following day, she brought Howie to the clinic where they met with a therapist and other clinical staff. Thus, even though the narration presented above is not in the form of an extended account of Crystal’s life, what makes the scene in the social services office an autobiographical occasion in the sense intended by Zussman (2000) is that it spawned a series of other, related moments over which such an accounting had to take place.

Crystal’s disclosure to Howie was mandated by the state as part of the bureaucratic process of ‘rationally’ managing public resources for poor people living with HIV. What is interesting about this account is that Crystal has fulfilled her obligation to ‘tell’ according to the logics of the state and of the clinic. Yet, as we show below, these ‘tellings’ do not work to unburden her or to relieve her of nagging concerns about how to live or how to manage her relationship with Howie in the midst of HIV. In contrast to the literature that describes disclosure as a ‘turning point’ or as an emancipatory act made possible by the finding of a voice (Verghese 1998), Crystal did not experience the moment at the social services office or those that followed at her grandmother’s apartment and at the clinic as breakpoints after which her relationship to the disease or to Howie shifts. In fact, when Howie does not respond to Crystal’s disclosure in ways the institutional imaginaries anticipate, ‘telling’ has the effect of creating both anxieties and work for Crystal. This is also the point at which the institutional management of her life breaks down: she is left to do this work and to deal with these anxieties in ways that are largely invisible from within these institutional contexts (Smith 1987).

Crystal’s ongoing concerns have nothing to do with the kinds of legal and bureaucratic requirements imposed on HIV positive people by the state through an expansive array of institutional structures. These kinds of formal injunctions and processes provide her with little guidance about how to deal with the ethical issues that surface in the context of everyday life. The disjuncture that we have described reflects the gap between contemporary bioethics, as a set of normative codes governing subject relations in the (institutional) realms of medicine and biology, and the moral, an element of social relations that has anchors in everyday experience and in specific local worlds. This gap has been the subject of a growing number of anthropological critiques of bioethics (Das 1999; Kleinman 1995; Petryna 2005; Turner 2003, 2005). Arthur Kleinman (1995) notes that most illness episodes unfold in the context of the family and through a series of mundane domestic scenes rather than in the institutional arenas that are at the center of most bioethical discourse. Indeed, Crystal’s struggles are made visible not through dramatic, institutionally-orchestrated moments—such as the scene at the social services office—but rather through attention to her everyday.

One point of entry into the local moral world in which these scenes are played out is through Crystal’s narrations about her struggle to have a child. Crystal has wanted a child since she was a young girl, and now that she has HIV she wants to get pregnant as soon as possible so that she can spend time with her child before she gets sick. Howie has a young son from another woman, but for most of the time we interviewed him he had little contact with his son because of a contentious relationship with his ex-girlfriend who had him charged with stalking and obtained a restraining order against him. Howie’s anger and sadness about not being able to be a father to his son only adds to the pressure Crystal feels to have a child. Crystal has been alternately frustrated and depressed by her inability to conceive, and by what she perceives as the clinic’s failure to appreciate her desire to become a mother. From her perspective, clinic staff are overly focused on managing her HIV infection, and have failed to register what, to her, is an urgent need for help. At different times she reported being told that there was nothing wrong with her and that she just needed to be patient; that she was too heavy and needed to lose weight; that she was under too much stress; and, finally, that she had polycystic ovarian syndrome and probably could not conceive. Crystal called adoption agencies and looked into becoming a foster parent, but in both cases she was told that unless she removed Howie’s name from her lease she would remain ineligible for these programs because he was once convicted of a felony drug charge and spent three years in prison.

Crystal frequently talked about wanting to see a “specialist” for her fertility problems, but she had no idea where she could access this type of care. Since Crystal was diagnosed with HIV at the age of 15 she has been attending the same clinic, and she says that this is the only source of care she knows. Crystal and Howie rarely talk about HIV, in part because these conversations end in fights. Yet there is a sense in which the topic is always lurking just below the surface in the domestic scenes that unfold around their struggle to have a child. Howie does not like going to the clinic and does not accompany Crystal to her clinic visits or ask her about them when she returns home. She wants him to go with her to “ask questions [she] forget[s] to ask” and to push for a referral to a specialist. Howie has twice been tested for HIV in the adolescent medicine clinic, but is too old to receive regular care there and has not sought care elsewhere, though he and Crystal regularly have unprotected sex. Crystal adopts the language of the clinic in interpreting Howie’s avoidance of care and his refusal to engage in discussions about HIV. She sees these actions as evidence that he is “in denial” about her HIV status and his own vulnerability. In our interviews she continually circled back to questions about what it would mean for Howie to ‘know’ that she is HIV positive. Thus, despite their plans to have a child, Crystal describes doing things like bringing condoms home from the clinic and putting them in the bedroom where Howie will see them. When he does not use them she wonders if it is because he thinks that she will be offended.

As HIV becomes a chronic illness that can be managed with medications, its temporality has become more salient to discussions about disclosure. The ability to live a longer life with HIV or AIDS raises questions about how we might think about disclosure if we conceive of it as a temporal process that parallels the illness, rather than as a discrete event that stands apart from the flow of experience. While clinicians have noted the need to think about disclosure as a process, the imagination of this process is one in which, over the course of several clinical consultations, the provider ensures that the patient has a ‘complete’ understanding of the risks and benefits of certain therapies or in which information about medications is made available as it emerges (Etchells et al. 1996). These conceptions are limited in that they do not take into account the ways in which the meaning of ‘telling’ shifts over time and across contexts. An example is provided in the interview excerpts reproduced below. In the first excerpt Crystal is narrating the disclosure of her HIV status to Howie’s sister. The telling was prompted by Crystal and Howie’s decision, several years after the scene at the social services office, to get married, and by Howie’s family’s opposition to the marriage and refusal to attend the ceremony and the small party they organized at their apartment for the occasion:’

C: I told her [about having HIV] because I wanted her to know. That’s when [Howie’s family] was telling me they didn’t feel we belonged together when we got married. And I told her, but I told her, you know, not to kind of humiliate Howie or not to even put my business out there or not to make her feel sorry for me. I told her because I wanted her to understand that, why I felt that it was time that we got married, or whatever. So I told her, not even really thinking, to be honest about it. I didn’t really think well, what if she does go back and start talking to somebody. You know, maybe she’ll go back and tell his mama this or whatever. It never crossed my mind to think about that at the moment, because at the moment I didn’t really care too much because we had so much anger amongst us and stuff that I just wanted her to see my point of view, so I told her.

When Crystal first told Howie that she had HIV he had pledged to marry her within the year, but money problems got in the way and they put the ceremony off several times. In their subsequent discussions about getting married Crystal’s HIV status was not acknowledged as a factor in the timing of the ceremony, as it is in the excerpt reproduced above. Yet this is not to say that, as in Crystal and Howie’s exchanges about having a child, the specter of HIV was not present in these discussions. In Crystal’s exchange with Howie’s sister, disclosure is almost unwittingly performed as part of an attempt to reconcile Howie’s family to the marriage. What Crystal did not recognize until she tried to tell Howie about the exchange was how her disclosure might work—not in terms of her project of family unification but in terms of her relationship with him. In the excerpt reproduced below she describes Howie’s reaction to her disclosure and a new set of strains that this has introduced into their relationship and that she now has to manage:

C: So I had told him I told her, and he was like “No, you didn’t tell her. She would’ve told somebody by now. She would’ve mentioned it. It would’ve come back to me,” and this and that. I thought about it, and I said, “No, I’m just joking. I ain’t tell her.” Because I seen the anger in him about me saying that…So yesterday we was talking about it. And I was like, “Yeah, you know I forgot I told your sister, I told her, or whatever.” And like his whole facial expression changed with anger. And he’s like, “No, you didn’t tell her because she would’ve told my brother, and he would’ve told me. Then he’d come and tell me afterwards. Oh, if it ever comes out I’m leaving you.” And I’m like, “How could you even say that? And you know that this is…eventually they will know one day. So for you to say that is kind of like…..”

In most of the research on disclosure, ‘telling’ is conceptualized as an event and the focus is on immediate or near-term consequences, such as in studies that look at the risks to women of violence or abandonment (Maman et al. 2001; Medley et al. 2004). Indeed, the clinics’ processes for disclosure are informed by the notion that partner violence is a possible consequence of telling. We are not disputing the importance of these interventions or of this type of research. We are suggesting, however, that conceptions of disclosure or telling in which a critical moment is imagined to be followed by a void in experience, or in which the meaning of disclosure is thought to remain stable over time or over the course of a long illness are limiting and fail to reflect lived experience. The ‘telling’ that Crystal did in the social services office was just the beginning of a story. This story takes on different meanings at different—and not necessarily critical—junctures of her life with Howie: in everyday struggles to have a child, to mend relationships with family members, or to care for one another. In fact, Crystal anticipates a future for this story. Though she wants Howie to continue getting tested, her “greatest fear” is what he will do and how he will feel when he tests positive. He has told Crystal that he doesn’t care if he gets HIV, but Crystal calls this claim “a lie” and says that she noticed how he “lighten[ed] up” when he got his test results back. In the interview excerpt reproduced below she describes how she anticipates Howie’s understanding of her HIV status and of the story that began with her disclosure will change once he becomes infected:

C:…And then like sometimes maybe we need to go and talk to somebody together, whatever, you know, because God forbid he does find out, this year he happens to get it. It’s like what are you going to do then? You not prepared. You don’t know nothing because you don’t want to go and get the information from them, which one day it is going eventually to happen. He doesn’t understand that.

L: Do you think he doesn’t understand?

C: He blocks it out completely. Like to him it’s like it don’t exist, “It can’t happen to me.” Everybody has that attitude like ‘it can’t happen to me,’ but it can. I try to tell that to him, and he doesn’t get it.

L: Do you think that if he did test positive he would just ignore it?

C: No, I think he would be enraged, and sometimes I think that he would probably try to hit me because to fight back. He blocks it out so much like if it doesn’t exist that, to him, to find out that he has it, he’s going to be like … I think he’s going to have some kind of hate or animosity towards me about it because the fact that he blocked it out so long, not having to deal with it or nothing. He doesn’t go to the doctor, so it’s like it don’t exist in his thought, like it can’t happen to him or nothing.

Telling does not provide Crystal with the kind of social support that she or we might have anticipated from the literature on disclosure. Neither might her disclosure work to prevent the spread of HIV, as she and Howie continue to have unprotected sex in the hope of having a child. We leave open the possibility that this is not because Howie is “in denial,” even though few available narratives, including those employed by Crystal, allow for alternative understandings.³ The concerns that disclosure brings to the fore for Crystal—notably dealing with Howie’s and her own vulnerability over time in the context of trying to form a family—register faintly, if at all, with the institutions that she circulates through. Her anxieties around these issues cannot be received or can be addressed only in an ad hoc and unpredictable manner. As a result, they get folded into her life, and dealing with them becomes her everyday work.

The story of my life

The adolescent medicine clinics took a holistic view of health, which meant that they did not just provide clinical care to HIV positive patients, but were also involved in public health activities such as counseling and testing and public education. Patients’ stories were critical to these activities. Some of the young women served on the clinics’ Community Advisory Boards or were paid employees who worked as peer educators for the outreach education programs. In these capacities they attended HIV and AIDS conferences, staffed information booths, and represented their peers as “consumers” at meetings where researchers discussed HIV prevention programs. On a less formal basis, the clinics called upon the young women to talk to new patients and orient them to their programs. The clinics also encouraged the young women to participate in activities that they organized. These included support groups; parenting groups; marches and parades; talks; conferences; letter-writing campaigns; the production of newsletters; holiday parties; World AIDS Day events; and recreational activities like bowling, picnics, or trips to the zoo. Many of these events were also attempts to advance a larger political project—such as educating the public about HIV; promoting the acceptance of people living with HIV and AIDS; raising funds for activities or resources; or building networks for political organizing or information sharing. These types of occasions are also thought of as therapeutic in that they provide opportunities to talk about one’s disease as part of a ‘community’ of similarly affected or sympathetic others (Plummer 1995).

At the same time the adolescent medicine clinics tried to create a ‘family-like’ atmosphere; in general, there were warm relations between the staff and the patients. Patients could call clinic staff outside office hours or make last-minute arrangements to be seen. Staff often knew the young women’s family members, visited their homes, and intervened when they did not show up for clinical visits, needed help with housing or a job, or had legal problems. These types of relations meant that there might be jealousies and hurt feelings amongst the patients when staff overlooked them for a spot on an advisory board, showed preferences for specific patients, or forgot their birthdays. Yet these types of relations also meant that the young women were conflicted about what to do when they did not want to participate in clinic-sponsored events but did not want to disappoint the staff who had organized them. Some events, such as the holiday parties, were well attended, but many of the events were not. When one of the clinics gave out free tickets and arranged transportation to a city-wide health fair and community forum on HIV where Magic Johnson was the featured speaker, only one patient showed up. Young women would sometimes spend considerable time in our interviews trying to work out what to say to extract themselves from a social event or a parenting meeting without hurting the social worker’s feelings. Some of the young women asked to meet outside the clinic so they could avoid these kinds of entanglements.

Even when patients expressed interest in these activities, it was often for reasons that had little to do with the clinics’ public health agendas. Institutional narratives about what it means to be a peer educator or outreach health worker provided the young women with a ready language to describe their experiences in these capacities. However, these formulations unraveled as the interviews went on. We can see how this happened not only by looking at what the young women said over time, but also by juxtaposing how they talked about their peer education and outreach responsibilities with the actions that they took, or the ways they organized their everyday lives (Smith 1987). Crystal’s case is an example.

Just over one year after we began interviewing Crystal, she announced that she was in training to become a peer educator for the clinic’s outreach program. That Crystal’s announcement initially surprised us attests to the dominance of certain narratives about what it means to tell one’s story in the context of an outreach education program designed to prevent the spread of HIV and AIDS. In order to become a peer educator, Crystal had to participate in an eight-week training program and pass both written and oral exams. She had little interest in getting to know the other youth in the training program, some of whom also had HIV. Crystal said that most of the trainees “[didn’t] communicate with one another,” and at the close of the program she was unsure who had passed the exams or who would be working with her on the outreach team. Crystal’s accounts of what she learned from the training sessions and what kinds of questions were posed on the exams were matter-of-fact:

C: … And they asked … what was one of other questions they asked me I can remember? Oh, when they report a person that has HIV, when they report it to the Health Department, what is it that they report? And you know, they always tell you, like your name is not on there, you know, it’s just numbers and stuff. I said the numbers, you know, like the numbers, your number or whatever and I was wrong. What they report is your name.

L: Do they?

C: Yeah, they report your name to the Health Department. When they test you for HIV and you come back positive, they report your name to the Health Department but then the Health Department gives like a number, where after that, your name is never used. So I’ve always heard them say the number, so I put the number when I took the test, but it wasn’t the number, it was your name. So that’s how I messed up with that one.

Name reporting generated substantial controversy and public debate before it was adopted by the city’s health department. Yet, Crystal was not concerned, here or elsewhere in our conversation, with the issues name reporting raised (Dolbear et al. 2002); her focus was on how she “messed up” in her response to the question and lost points on the exam. L. Mun Wong (1998) makes a similar observation in the context of an interview study he conducted with poor women attending GED classes in the wake of welfare reform in New Jersey. He expected the women to be critical of state and federal policies that cut their entitlements and forced them into classrooms and low-wage jobs, but found that they had trouble “narrating politics.” This is not a normative evaluation, nor is it a commentary on what Crystal or the women in Wong’s study know or do not know. These examples are simply reminders that Crystal’s participation in the peer education program has no point of contact with public health narratives that connect forms of action like peer education with political ‘consciousness raising’, ‘empowerment’, ‘emancipation’, or the formation or celebration of ‘community’.

As part of the training program, one of the outreach activities Crystal was assigned to participate in was a radio show in which she and another woman living with HIV answered questions from a live audience of high school students and from listeners who called in. Crystal said that she agreed to do the show because it was “part of the job” and it was “anonymous”: she could use a false name and she did not have to worry about running into students in the audience after the show because they were from a different part of the city. She was nervous about doing the show because she never talked about HIV (“not even in a leap year with people who have it”). However, clinic staff recommended during the training that they try to answer all of the questions that people ask them, so Crystal said that she was “honest” even when the students asked questions that were “personal” and “deep.” The questions she found most difficult to respond to had to do with how she got HIV and how many people she had had sex with. This is how Crystal described her feelings after the show:

C:… But later on, I realized that it helped me. Like it helped me a lot more than I thought.

L: Did it?

C: To be able to speak about things. After I talked about it, it was like I felt like a big relief like, like a whole new beginning.

L: Did you?

C: Yeah. It was a week after I got married. So it was like I started a whole new life now. I felt like I could do it again, over and over the story of my life.

How are we to think about this particular narration, and about the story that Crystal told and that she could tell, over and over again? Is the narration above evidence of the same “phenomenon” that Verghese has identified in his HIV clinic? It is clear that the peer education program and the occasion of the radio show allowed, or even obligated, Crystal to craft a narrative—”the story of my life”—suitable for sharing with school-going teenagers at risk for acquiring HIV. It is also clear that Crystal has identified the moment of its telling as transformative—as the start of a “whole new beginning.” Yet, by attending to Crystal’s everyday life over time it becomes less and less clear what ‘having a story’ or telling that story, even “over and over,” has to do with autobiography. It also becomes increasingly evident that little about Crystal’s life or her experience of HIV changes as a result of telling her story as part of the radio show. There is no empirical evidence for the breakpoint Crystal identifies in her narration of this event.

Crystal’s involvement in the peer education program was in fact intricately bound up with what was going on in her everyday life. There are many different threads that could be picked up here. Among them are that Crystal was trying to establish a family with Howie; struggling to pay her bills; and attempting to fulfill what she thought of as her obligations to the clinic staff. At times some of these concerns were more pressing than others, though most often they were co-occurring and difficult to disentangle. During the period of our interviews Crystal and Howie initiated a legal battle to obtain visitation rights so that they could spend time with Howie’s son. Although they had been talking about getting married since Crystal first told Howie that she had HIV, Crystal saw being married as a way to strengthen their case with the courts. She was also concerned about how the courts would view their lack of employment. Howie got a part-time job, but “nothing sturdy,” and Crystal viewed her participation in the peer education training program as a way of working toward a permanent job with the clinic. While Crystal acknowledged that Howie’s record made it difficult for him to find a steady job, she frequently complained that he didn’t try hard enough. She also worried that he spent too much time hanging out with friends who hustled and got into trouble with the law. To keep him off the street she encouraged him to play video games, but she tired of his friends who crowded into their small apartment, made a mess, and ate all of their food. Crystal and Howie fought over who was responsible for cooking, cleaning, shopping, and paying bills, and over how the welfare money should be used. When they fell behind on their electric bill the welfare office took over the payments but reduced Crystal’s benefits accordingly, making their already tight household budget even tighter. The peer education job paid $10 an hour, which was more than Crystal or Howie could make at other jobs. Crystal also saw it as a way to prod Howie either to get a job himself or to take on more responsibility for domestic work.

In fact, when Howie got a full-time job at a local supermarket and they won visitation rights to see his son, Crystal left the peer education program and attempted to extract herself from the various demands that telling others about her life had placed on her. For example, following the radio show two young women in the audience asked Crystal for her cell phone number and continued to call for advice and information. Howie was upset by the calls and Crystal began to find them burdensome and would report “forgetting” to call the girls back. She had a more difficult time managing the continuous demands from clinic staff. Though she resented these requests, she described the clinic staff as “almost like family” and she worried about disappointing them. The pressure she felt to help out at the clinic by acting as a spokesperson was so great that at one point she considered leaving the clinic for a new source of care:

C: I’m the first person they call now. Everybody else is…Like I told you about most of them who was in the group home with me and they all was older, and so now like they already moved to the [adult] clinic. And I’m the only one left behind, and it’s like everything is coming on me now.

L: And can you say, “Can you call someone else?”

C: I don’t. That’s the problem. I don’t because I feel like, “Oh, she’s going to be mad at me. Oh, I’m going to let her down. Oh, I got to do it because she called me.” And then it’s like, well, dang, I know I really have something else really important I’m supposed to do that day, and I really can’t do it, but how can I tell her I’m not going to do it, and she really needs me, and there’s nobody else … And then most of the time it causes problems at other parts of my life. Like, all right, I’m being torn apart. I don’t know which way to do, and so, therefore, I’m going to do what I think is best …. And then, so it’s like [the peer education job] backfired in other words. It worked out for the time being for what I needed it to work out for, but then now it’s like…

Telling her story to different publics served many purposes for Crystal. Some of these had nothing to do with preventing HIV or dealing with her diagnosis in ways that Plummer (1995), Verghese (1998), and others might describe as personally therapeutic. Crystal did not participate in the peer education program because she felt an affinity with other HIV positive youth or because she is convinced that by sharing her story with other young women she can help stem the spread of disease. While Crystal did endorse this effect of the outreach program, she has no stake in the clinic’s public health project. When the job no longer helped her to manage her everyday life, she withdrew from it despite the economic rewards. Her willingness to narrate a story was contingent. It would be a mistake to interpret the self that emerges from those narrations as stable, as one with which Crystal identifies closely, or as evidence of a politically activated subject.

The reluctant storyteller

Our interviews with Crystal are doubly significant for this study: they were in themselves autobiographical occasions, but they were also the autobiographical occasions through which the other such occasions were narrated. As with the other women, our early interviews with Crystal were conducted at the clinic. A research assistant who worked at the clinic would call Crystal and the other young women to set up appointments. Crystal was paid $25 for participating in each interview. The clinic also gave her a food voucher worth $4.00 to a neighborhood pizza joint, and helped her with transportation to and from the clinic if our interviews were held there.

For the first several months that we interviewed her, Crystal sat at the conference table yawning or disinterestedly flipping through pages in a magazine while providing short answers to our invitations to talk. She said that she “hated therapy,” and that she was suspicious of therapists who pretended to care about her by asking lots of questions, but who did not give her any advice or answers or talk about themselves. Crystal said that when she was younger her grandmother had warned her not to talk to “crackers,” because it only led to having your children taken away or your family split apart. In an attempt to distance the interviews from anything resembling a therapy session we spent months talking about supposedly impersonal things: the welfare system, psychiatric care, GED classes, the job market, group homes, law enforcement practices, and public housing. Through these conversations it became apparent how various structures of social control probed virtually every corner of Crystal’s life, making what she thought of as her private concerns into a matter of public record. It also became apparent that the kind of narrative production we were encouraging in the interviews could only be seen as part of a larger system of surveillance that, for as long as Crystal could remember, had pried her life open, inspected, evaluated, and controlled it. We will return to this point later.

The barrage of demands from institutions of the state was present in the lives of most of the women we interviewed, though the degree to which it was present varied from state to state along with the amount and kind of benefits the women could receive. It was not difficult to see how pervasive the institutional management of Crystal’s life was. Shortly after she was diagnosed with HIV, the clinic referred her to a live-in group home for HIV positive adolescents because her mother, who suffers from severe mental illness, was unable to care for her. When Crystal was a young girl there were days when her mother would not recognize her and would become so violently aggressive that Crystal would have to call the ambulance to take her to the hospital where she would be held for several days and then released. On other days, Crystal would stay home from school to be sure her mother did not wander away. Social workers were a fixture in her life, but provided only sporadic help. Crystal, her mother, and her younger brother lived in public shelters and, for a time, with Crystal’s grandmother, who resorted to physical force to keep Crystal’s mother subdued. Crystal’s aunts and stepfather were periodically present, but could not cope with the situation or help Crystal to manage her mother. Crystal’s father was not part of her life; in fact, she met him for the first time when she was 16, after cold-calling men with the same last name who had numbers listed in the local telephone book.

At the group home Crystal was required to attend weekly therapy sessions, workshops on drug use, meetings with a case manager, and group dinners. Residents were randomly screened for drugs and had to attend programs about how to find housing and jobs. The older adolescents could get passes to leave the group home on the weekends, but since Crystal was not yet 18 she was not allowed to stay out. She chafed at all of the rules and was eventually kicked out for repeatedly running away. However, she said she liked the staff because they were young and would talk to her “straight up” or like “one of [her] home-girls,” in contrast to her therapists and case managers with whom she was forced to engage in what she called “office talk” or “preppy talk.” Crystal often lumped together different kinds of professionals from the social services industry—such as case managers, social workers, and therapists—and described her interactions with them in much the same terms. In the excerpt reproduced below, for instance, Crystal describes the similarity between the ways she is prodded to talk about herself in the context of therapy and in sessions with her case manager:

L: What do you talk about with a case manager?

C: It’s just like therapy. We used to…it’s the same thing.

L: What do you need? Your problems with…

C: Yes, and how you feel, what kind of mood you feel in. They give you a sheet and you just have to…of different moods, and you had to pick one and tell why you feel that way and she writes everything down and she talks, “Oh, how you feel about this situation that happened, or this and that, or how’s the relationship with your parents now? And how the relationship with you and other people in the [group home]?” So everything…I’d be talking and she writes everything you’re saying down, word by word. So it’s just therapy.

After being kicked out of the group home, Crystal was provisionally placed in a public shelter for HIV-positive adults while her case manager helped her to sign up for entitlements and to collect the documents she needed to make the case to the state that she could live on her own. Crystal said her case manager wanted her to see while in the shelter “how it is to have to supply my own everything.” She found the shelter rules nearly as constraining as those at the group home. Howie could not stay there with her, nor could she spend nights out. Lonely and unable to sleep, she would stay up all night crying to the security guards.

By the time we met Crystal, she was living in a one-bedroom apartment paid for by the city’s Division of AIDS Services (DAS). Several times a year she would receive a notice in the mail that a case manager from the welfare office would be coming for a “face-to-face.” Crystal said that the case managers asked the same kinds of questions at each of these home visits and that they would “write everything you say down.” Her case manager would want to know things like how much money Crystal had in her pockets, whether she was working or going to school, how much assistance she received in the form of cash and food stamps, who was staying in the house and how much money those people were making, or why there was a stick of men’s deodorant in the living room. Sometimes the case manager would look in the cabinets or the refrigerator to see how much food Crystal kept. According to Crystal, the case managers were also in contact with her landlord and with people at the clinic. Every three months a case manager told Crystal to apply for SSI, though she had already been turned down five times when we started our interviews. Twice a year she was required to see a doctor through the welfare office—as Crystal put it, “to see how my T-cells are moving.” Indeed, there is the sense that the structures of surveillance and control to which Crystal is subjected penetrate so deeply as to monitor the cellular processes going on inside her body.

Eight months after we met Crystal she introduced us to Howie, who initially attended our interviews with Crystal, but then wanted to be interviewed on his own. The money Crystal and Howie jointly received for their participation was a significant boost to their household income and was, undoubtedly, an important reason for the regularity of our encounters. Crystal never missed an interview. Though it took longer for Crystal to suggest that we meet outside the clinic than it did for some of the other women, we were eventually invited to Crystal and Howie’s apartment, and to join them at restaurants for dinner. Between research visits they sent photographs of themselves and of a birthday party they organized for Howie’s son. They also sent occasional letters via e-mail with news about their lives. After our last interview Crystal said she had decided that she “liked therapy,” and that we had “helped” her and Howie with their “problems.” Crystal also said that she still did not want to regularly see a therapist.

As Crystal’s opening and parting words suggest, it was never easy for her and for some of the other young women to ‘place’ the interviews. This site was not marked out on their institutional maps. They talked about how the interviews did not seem like research or like other kinds of research studies they had participated in. They had trouble disentangling these encounters from their experiences with therapists or social workers. Some of the young women would refer friends and family members for the project who they thought needed various forms of assistance. Margarita, a young Puerto Rican woman who lived with her long-time boyfriend and their daughter, introduced us to her friend Juan, who was also HIV-positive and who was hospitalized several times during our study with serious infections. Margarita would call us to find out when we were coming next because Juan had lost his apartment or broken up with his girlfriend and, in her view, “really needed to talk to someone.” Lucy, who moved to the US from the Dominican Republic as a young child after her father was killed, introduced us to her younger sister and her mother. Both of them were depressed, and Lucy thought that talking or participating in the interviews would help relieve them of the burden of keeping the ‘secret’ of her HIV infection, even from Lucy’s stepfather. The young women repeatedly brought up social workers who they had become attached to and who had left the clinic just before asking when we were coming back next. Even the clinic staff would sometimes implicate us in these roles. When the nurses knew that we would be seeing a patient who was overdue for a clinical appointment or who was without medicines, they would ask us to encourage the young woman to come in to the clinic or to be sure to see them before leaving the clinic.

The women used a number of strategies to control the way they presented themselves in the interviews or the kinds of things they would be asked to talk about. In fact, some were quite good at warding off certain lines of questioning or at trying to stage particular types of encounters. Armel, for example, would often suggest that we meet at a noisy restaurant and would bring her daughter, whose care needs made it nearly impossible to sustain a conversation. Jasmine would suggest that we go shopping, but would arrive with a friend and tell us privately not to bring up certain topics in her friend’s company. Keshawna would get angry and became so verbally aggressive that we stopped interviewing her; she was the only woman we dropped from the study. Taniqua also turned the tables, but in a different way: she asked the first author (who was the interviewer) questions, made comments on her appearance and diet, and gave her the food vouchers the clinic provided Taniqua for participating in the study. Over time these stagings did not disappear, but they became less frequent or less obvious.

‘Autobiographical occasions’ and the everyday

One notable feature of the autobiographical occasions we have described in this paper is how they intrude into Crystal’s everyday. The slippage, or the blurring of the boundaries between an autobiographical occasion and everyday life is accomplished not by the displacement of a physical presence across some threshold separating ‘public’ and ‘private’—the high school student that calls Crystal after hours on her cell phone or the welfare worker who conducts a home visit. The term ‘autobiographical occasions,’ and Zussman’s claim (2000) that these are “special occasions,” suggests that therapists, welfare workers, and case managers do their work on stories and on selves in discrete, identifiable moments. It is as though the ‘I’ that is the referent of the narrations produced in those occasions is standing in for some ‘real’ or ‘true’ ‘I’ that remains hidden deep within—perhaps inaccessible, or accessible only through the building of sufficient rapport. This has the effect of maintaining a distinction between a public and a private, or hidden, self and, more fundamentally, of reinforcing the notion that there is some stable referent—some interior or authentic voice—to which first-person narratives do, should, or can correspond. Our critique of Zussman’s concept is therefore that while it usefully orients our attention to scenes in which institutional and disciplinary processes, practices, and discourses become particularly visible, it seals off these occasions too tightly. It seems to us that the therapists, social workers, and case managers that people Crystal’s life remain with her; they shape her everyday understandings of why Howie will not go to the clinic with her, or of what a research interview might be.

This raises the question of what makes an account of a life autobiographical. Another way to ask this question is to ask how we are to receive narratives or how we are to evaluate the work of ‘voice.’ As Catherine Kohler Riessman (2002) and others have pointed out, narratives do not “speak for [themselves],” and meaning is not always readily accessible from an analysis of text (Briggs 1986; Miczo 2003; Sandelowski 2002). Dorothy Smith (1987) approaches this somewhat differently. For Smith, everyday experience is a starting point for our investigations, but we cannot rely on women’s narrations of their everyday to reveal the forces that shape it. This, for Smith, is the work of the social scientist. We would underscore again that these critiques are not critiques of narrative research; rather, they are cautions about the use of narratives as unproblematic representations of a pristine ‘inner voice.’ Thus, understanding why people engage in care—or in behaviors that put them at risk for acquiring HIV, or in public or collective projects like peer or outreach education programs—is not as simple as listening to the words that are available to render these actions meaningful. In part, this is because people cannot always find a language for their experiences, or that language might not be readily accessible to them. Among the reasons for this, we have highlighted the role of the archive—the collection of available understandings, or the storylines that have been laid down in ways that make them publicly accessible (Trouillot 1995)—and the way it is constituted. This is particularly germane in cases like those of the young women we worked with, whose opportunities to contribute to the archive have been limited.

Riessman suggests that in some cases we might need to pay less attention to voice, or to what is said, and rely more on observational methods. Zussman’s concept of the autobiographical occasion provides a useful focal point for research attention, as the intersection of women’s everyday lives and the social structures that mold them. Allowing for forms of narrative engagement that diverge from those one gets from the use of standardized, scripted, or structured interviews conducted over a relatively short period of time goes some way toward opening up narrative possibilities, but we do not expect to locate our subject through methodological inventiveness. In this work it has indeed been instructive to pay close attention to the way the young women live and to the way they narrate their lives over time in the midst of both poverty and HIV. By catching some pieces of their experience, this paper can be read as an attempt to expand the archive and to argue the need to extend the range of narrative structures available to people living with HIV and AIDS.

Biographies

Lori Leonard is an Associate Professor in the Department of Health, Behavior and Society at the Johns Hopkins School of Public Health. Part of her research focuses on how young women with few resources experience HIV and AIDS in the USA at a time when HIV and AIDS are beginning to be thought of as chronic but manageable conditions.

Jonathan M. Ellen is a Professor of Pediatrics at the Johns Hopkins School of Medicine and is a practicing adolescent medicine physician. His research interests are focused on HIV and STD prevention and treatment for adolescents.