Erez Solomon Independent Study Spring '11 Neni Panourgia, PhD 6/6/11 Biomedicine and the AIDS Epidemic:

Six Months with Jamie's Narrative A narrative approach to a study of AIDS is here recounted in an individual's episodic telling of his AIDS diagnosis, as narrated during a series of interviews. In doing so, these interview accounts echo scholar and activist, Douglas Crimp's caution to each narrator upon speaking of AIDS: ...we must never lose sight of the fact that the gay movement is responsible for virtually every positive achievement in the struggle against AIDS during the epidemic's early years (Crimp, 1988). Crimp acknowledges what makes for more nuanced and pronounced understanding of the starkly complex and confounding history of the epidemic, now thirty years after news of it surfaced in the medical public. He, like many Mailman School of Public Health's researchers, has previously focused on a direct strategy to prevention of infection; likewise, Richard Posner and medical campus colleagues began research in epidemiology and market strategies in prevention. Mailman research over three decades not only warned us of the slippage we find extant in any given cultural representation of AIDS, but more importantly, showed that narratives of AIDS are not always founded upon sound medical, biological, and biocultural knowledge. This paper will argue that casting Jamie's account of AIDS against the history of the epidemic, draws the line between the cultures of medicine and science so finely, that a narrative ethnography of a living person with AIDS (PWA) is necessary to demarcate the personal and emotional separations that take place within the 'art of medicine'. In fact, medicine as a practice throughout this paper, is ostensibly all but divorced from simpler, if not taken for granted, reports of its attendant
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biocultural discourses. Utilizing the lense of narrative medicine and narrative ethnographic research, we can begin to differentiate between science's habitual and complex tendency to immerse itself in an epidemic's cultural narratives and science's actual practice of medicine in treatment of PWAs. In the absence of Jamie's 'real' AIDS narrative, disjointed and confounded by the epidemic's own historical narratives, this study draws connections in piecemeal over the course of four interviews, and through lengthy and consistent participation with interview transcripts. The time with Jamie during upwards to three hours of interview, and to reflect on the audio tapes and their written transcripts between interview sessions, proved as integral to this study as the scholarship on AIDS. In conversation with Jamie, he situates his life narrative prior to diagnosis as no different in the way he lived his life than his 'mainstreamed and edgy selves' in an unconventional and multi-faceted identity since being diagnosed with AIDS up to the now present day. For example, four at-once contradictory interviews all present a perspective that is admittedly time-bound and everchanging, and largely not on the terms of pre- and post-diagnosis. Anthropologist Andrew Beatty concludes of such ethnographic accounts given to narrative's influence, [a]s the few exceptions indicate, only a narrative approachbecause it locates emotion in practice; in the indivisible flow of action, character, and historycan reveal the dimensions of emotion hidden by other methods (Beatty, 2010). Douglas Crimp, cultural and art historian, has also emphasized the personal accounts of AIDS, for instance convincingly arguing AIDS photographs are undeniably not representative of the personhood of the patients, primarily due to the absence of a cultural memory and subjective experience entwined in storytelling, a more accurate 'portraiture as process'.

Elsewhere, in other words by Crimp: Anything said or done about AIDS that does not give precedence to the knowledge, the needs, and the demands of people living with AIDS must be condemned (Crimp, 1988). Narrative ethnography, like such exemplary AIDS activism, can too claim a pertinent alliance to the personal details of Jamie's medical disclosurein exemplifying how the extant presence of the closet's discourses in the public sphere have shaped and informed much of the emotional representations of the epidemic. Indeed, this short personal ethnography's disclosure is of a person who lived throughout his own individual narratives of AIDS's culture of disease representation. Beatty describes narrative ethnographythe narrator and ethnographer: two of a kindas a microscopic drama of the macroscopic, here disease, with no remedy in mind, but what [I] fastened on was a sense of predicament: the predicaments of individual characters. . . . Unlike structure, habitus, memory, agency, or the native point of view, these predicaments are observable, dramatic, evolving, and highly revealing. And they are the stuff of emotion (Beatty, 2010). Rather than solely a partner in treatment of an individual's illness, like an ethnographer writing up a cultural account, each practitioner in the medical community too sustains one's own theoretical and ethical commitments to the emotional and narrative experience of the patient, in the clinic, the street, or the doctor's office. As illness memoir scholar, Thomas Couser states: [i]n addition to other forms of activism, a number of gay men have been willing to put their bodies on the line, volunteering as subjects for experiments and drug trialswhether above- or underground. (Here the gay community has capitalized on its marginalized position.) Although controversial, this activisman expression of a sense of urgency among those infected, has been a pivotal, noteworthy gesture among the medical

community, inclusive of AIDS doctors early in the epidemic. The clinical encounter, as the field of narrative medicine would have it, is not only medicalized by doctors, but situates medical knowledge as intervention by social workers, mental health clinicians, nurses, EMTs, those in the academy, etc.thus it takes the role of community partnershipwith the patient and patient's narrative as a priority. This form of patient care implicitly carries an advocacy message interwoven within its narrative accounts, such as in the case of AIDS by and large. AIDS and its attendant narratives have long taken the shape they have specifically due to the efforts on behalf of researchers to support the treatment of the individual part of the larger community. Such research initiates a story of genuine concern and narrative competence of the patient, after years of misaligned motives, realigning public health with personal wellbeing. In so far as the ethical treatment of the gay community has come under attack in AIDS discourse, Leo Bersani's in his work, Homos, champions what he calls 'The Gay Absence'. He urges a politically outspoken reception of the homosexual body and others' perception of its difference in the public, as his unabashed book's title does, a performative utterace of just such liberating affect (Bersani, 1995). However, Bersani is perhaps one of the exceptions in the epidemic's historical inventory of personal investments in practice and in theory. To care for the identity and health of othersmost notably on the world stage as a public health or global health initiativethis cultural imperative in Jamie's narrative invites many questions regarding the public's perception of community and language at the advent of the AIDS epidemic. To quote Tobin Siebers in a critical queering of the community, an issue of Literature and Medicine terms the tension of this mode of both identification and representation a 'Disability as Masquerade': . . . what Sedgwick calls

vectors of a disclosure at once compulsory and forbidden. The closet is an oppressive structure because it controls the flow of information beyond individual desire for disclosure . . . society has a general tendency to repress the embodiment of difference. That is what queer theory teaches people with disabilities about the epistemology of the closet (Siebers, 2004). And to take the issue of communal language at face value, scholar and medical editor Jan Zita Grover, has argued: AIDS as a socially meaningful fact in the West has generated an enormous outpouring of words. Across journalistic, political, and medical discourses, a number of terms recur with such regularity that we might be tempted to conclude that AIDS has brought the worlds of the scientist and the humanist closer together. But we might alsoand with greater plausibilityexplain this phenomenon as an indication that certain shared assumptions are already embedded in these discourses (cited in Crimp, 1988). The research of humanists, whether those working in concert with public health professionals such as Crimp or those in the medical community, has exhibited the predominant and varied criticisms in the 80s medical narrative of AIDS to be social issues of extreme controversy, often misguiding the public, as Crimp affirms of Shilts' And the Band Played On. As a 'keyword' of culture, as of Raymond Williams' originary keywords, AIDS comes to bear as a discourse, its language changing the notion of disease from the early 80s onwards. 'AIDS: keywords' which Grover writes of and definesacquired immune deficiency syndrome (AIDS), AIDS. . . the disease, AIDS test, AIDS virus, bisexual, carrier, condone, family, general population, gay/homosexual community, heterosexual community, lesbian, prostitute, PWA (Person with AIDS), risk group, risk practice, spread, and victim (Grover, 1988). To contextualize Jamie's narrative, Raymond

Williams' compelling thesis of culture and community still holds sway: that the individual is simultaneously legitimated while libel to be lost in the abyss of a dominant culture's representative collection of words for contemporary society. Jamie's ethnography in the microscopic placed emphasis on perhaps an alienated changing culture after the 60s, underscoring his own lived experiences akin to those of the discourse surrounding AIDS at the beginning of the 80s. AIDS language simultaneously brought the PWA closer to the lived experience of the modern day citizen, while medicine still further distanced the patient experience from disease rhetoric and unqualified medical and linguistic 'explanations'. Take for instance what are undeniably only conjectures, rather than facts divorced from the opinion of medical professionals: Some biologists and physicians believe that reinfection with a different strain of this highly mutable virus places the body's immune system under additional stress and so accelerates conversion to the active disease state, thus shortening life (Philipson and Posner, 1993). Yet, after years of scholarship, research and clinical studies, public health scholars can definitively say, as Philipson and Posner do, [w]e know of no clinical evidence of this effect. This too is the case with the narrative of AIDS reflected in multiple interview with Jamie:
JA: And, my understanding, and actually the prevailing and mistaken wisdom in the medical community. . . was that people who were strictly tops, have a very low likelihood of contracting the disease, just because of the method of transmission. ES: Right. JA: Having said that, here I am. You know, what is it nowseven years post-diagnosis. You know, so perhaps, you know, I contracted, this very virulent form, I don't know if that's possible. Can you be more pregnant, you know? . . . But, so . . . that kind of surprised me a bit. I didn't expect to get the diagnosis that I did get.

As such, in discussing the care for, and of, those affected by the epidemic throughout his years of experience living in New York and San Francisco, Jamie has fleshed out a narrative that can answer to the public's questioning of the 'gay other' in the 80s in the

press. Its otherness in difference and the signification of AIDS both help show the way to a further understanding of the epidemiological narrative from the perspective of the patientnarrative medicine's primary intention on behalf of practitioners. Part and parcel to six months of conversations from late 2010 to 2011 herein discussed, a man diagnosed with AIDS almost a decade ago, Jamie bodies forth a narrative from within a cultural history of the epidemic. His account of this personal narrative is informed by discourses as varied as narrative ethnography, biomedical study of illness, public health policy, and of primary interest here, those words we find in his narrative and ethical accounts truly indicative of AIDS's biomedical historicity brought to bear by activists' dismissal of the disease history as the dominant cultural narrative. The promiscuity of gay men in urban centers of New York and San Francisco, the stigma of diagnosis and patienthood, the vocabulary of contagion and contamination, public health concern versus rights of privacy each is given to Jamie's intelligent and cogent sense of self and place of resistance in the gay community. Markedly unguarded discussion in interview constitutes a direct response to the knowledge we have of the history of AIDS from public health professionals, from the 'experts' of biocultures and biotechnologies in medical advancement, and from the terribly complex medical history of this particular disease in its often confused representations over the last thirty years.
JA: My doctor . . . cautions me, that I, it's dangerous for me, not because I'm going to get reinfected, although he does raise the idea of superinfection as being a possibility. But rather that, right now there's (cough) there is an epidemic in New York of other STDs, you know, syphilis and gonorrhea and all sorts of other things. And that I'm putting myself at risk for that, that's his real concern. ES: Right. JA: You know, it is a community of men who do consent to have high risk behavior with each other. I don't lie about my status. You know?

Persons constituent of the whole culturemetonymically bound in designation of a cultural signaligned one's public roles and private acts. A gay culture/lifestyle

predicated on the disease representation and conflated with promiscuity, took shape in a default medical 'explanation' dividing the healthy from the sick. This sort of formulation took on grand proportions within the rhetoric of discourses describing the sexual behaviors of the gay male in urban areas. An individual's right to privacy, domesticated sexuality turned public sex act in the bathhouse, and homosexual promiscuity as a public health riskall became issues put on varied and often contradictory guises in questioning a given population's status. No less trenchant, scholar Julia Epstein states of the devolving status of disease: We have moved from the study of individual manifestations of disease in Hippocratic medicine to an analysis of causally determined and determining natural histories of disease. . . between those items designated as objective signs and those labeled subjective symptoms, a distinction that has received recent attention as a disturbing disjunction between the physician's biomedical explanations of disease and the patient's personal experience of illness (Epstein, 1995). To conflate the individual patient's status into that of the entire gay community began to put contagion of disease under scrutiny, and the gay lifestyle in a controversial discussion among health and medical professionals. As some have said, gay mens lives were being put into the story of AIDS, rather than vice versa. Even as the rhetoric of contagion had grown near out of proportion, the public knowledge of AIDS grew from a scientific standpoint. How then decisively this misunderstanding of scientific knowledge and its implicit standpoints and counterpoints, nonetheless, left an official explanation in its wake: Public health professionals distinguish between a contagious disease, in the sense of one transmitted by air, water, insect or animal bites, or other involuntary routes, and an infectious disease,

transmitted only by voluntary contact between persons. The distinction can be criticized because it dichotomizes a continuum. Contagious diseases (in the narrow sense) can often be avoided, and not necessarily at any higher cost than that of avoiding an infectious disease, by keeping away from an infected person or population (Philipson and Posner, 1993). What came to bear by the early 90s was just exactly how such a way of thinking in public health discourse had developed, and prior to such development had constituted disease as a delimited and preconceived knowledge of a patient receiving medical care for a biological diagnostic criterion. Rather, the patient receiving individual medical treatment, rather than comprehensive care from/for the community, had to be delineated as such, and recategorized between the rhetoric of an individual's biological and community's epidemiological disease. AIDS, recall, is a syndrome, whose symptoms are diseases. Outside medical discourse, as we shall see, this inherently unstable term [is] invested with meaning by various metaphors and cultural narratives (Couser, 1997). Yet, how soon the disease rhetoric akin to the history of epidemiological diseases took form within, and targeted at, the gay community. Philipson and Posner continue, [w]e prefer the term communicable disease to describe both contagious and infectious diseases. Medical professionals found that they must begin to ask the difficult question of treatment practices, and target populations, risk groups, etcthus following the logics of biomedicine otherwise unaccustomed to previously at such a political stakeas had been done with tuberculosis and polio in, namely, the poor. What Andrea Barrett calls, 'the sea of information' in her science writing, deemed that epidemiologists would find themselves in a new information age, confronted by the newness of the AIDS-defined minoritizing discourse of a risk group, before it was understood as pandemic, as

tuberculosis had been in the early 20th century. Unscientific data was integral to a health professional's ability to negotiate the 'interplay of fact and imagination,' and like a newborn research scientist on unfamiliar ground, 'more than usually dependent on news from the outside world' (Barret, 2005). Barrett writes of how public health officials made use of information that read all too similar to news opinionhere and now reminiscent of the AIDS-diagnosis in responses to the figure of the gay man. She cites the following from a tuberculosis handbook by Ellen N. LaMotte, The Tuberculosis Nurse: Her Functions and Qualifications, dated 1915: . . . those who are mentally and morally poor, and lack intelligence, will power, and self-control. The poor, from whatever cause, form a class whose environment is difficult to alter. And we must further realize that these patients are surrounded in their homes by people of their own kindtheir families and friendswho are also poor. It is this fact which makes the task so difficult, and makes the prevention and cure of a preventable and curable disease a matter of utmost complexity (cited in Barrett, 2005). When one's health or illness, one's diseased or disabled body, and one's social self are constituted by the rhetoric of a disease's natural history, are not all modern citizens subjects of culturally constructed biomedical knowledge? What does it mean to narrate an individual's disease, a patient's illness, as Rita Charon's provocatively posed of narrative medicine's emplotment of the patient (Charon, 2006)? In Beatty's engaging American Anthropologist article, he qualifies Charon's terms: The one-to-one clinical encounter and the ethnographic-psychoanalytic interview are remote from the emplotment of emotion in action. As such, they systematically misrepresent naturally occurring emotion. Because they sample one story to tell another, always finding significance elsewhere,

they are poor models for a narrative approach. [my emphasis]. Many have urged the well-informed public to acknowledge the tragic losses to AIDS as a call to seriously account for what it means to live as a person in a biomedical age. Such cautionary criticism of modern citizenship proposes activism hand-in-hand with public and private health education. The collectivity of a group would grow to be the measure of both an informed public and a citizenship, a body of knowledge metaphorically uniting the singular, corporeal body with the welfare of the public. A community of public bodies, hence subsequently in activist group such as ACT UP, becomes subject to culture and 'informatics', if not full-well-aware of their status as objects of newly developed theories of bioculture, certainly constituents within any majority culture's newfound rhetorical age. Anthropologists and ethnographers like Beatty continue to approach this emotional and personal 'gap' between the treatment of an individual and an historical age, via: 'historical emplotment of emotions,' I mean the way in which emotions refer back to interwoven personal histories. I do not mean broader changes in structure of feeling or emotional discourses, which require a very different kind of historical treatment (Beatty, 2010). As Margaret Healy has recently written of, in an essay, Bodies politic: somatic politics and 'meaning making' in medicine and literature, burgeoning but somehow intangible and stillborn knowledge of disease, as that of AIDS, could only ever serve as a post facto guideline for the individual's behavior and falls short of the realm of irrevocably accounting for private acts. Healy, however, finds the body politic in history simply too susceptible to the metaphoricity of disease states. She contests, 'metaphors of the body are far more than simple literary rhetorical devices: they facilitate understanding and reasoning, initiate hypotheses and enable us to have a cognitive hold on the more

problematic, intangible experiences of our everyday existence. Crucially this means that when social systems are perceived to be disordered'sick' we tend to imagine their basic conditions of integrity and wellbeing partly according to how we perceive our physical body's conditions of health, designated and formulated on behalf of the social, whether systemic of sexuality, hygiene, one's personal management of health, or the public elimination of any other dangerous behaviors by way of political prohibitions. She continues, the body functions as a nexus of symbolic meaning allowing the easy flow of information between physical and social domains as had occurred with urban areas of New York and San Francisco, and then steadily to the nation as a whole (Healy, 2011). Look, for example, at newsworthy press of AIDS clinical trials in the last decadeor, just this past month. In interview, Jamie speaks to this negotiation of medicine's public health role in his private life:
JA: Yeah, we don't talk about AIDS. It's like, just not in the vocabulary anymore. Yeah. ES: And so does it seem, out of the ordinary when your doctor cautions you against JA: That's what I expect him to do, you know. (laugh) He's fulfilling his duty as a health professional, right? I am putting myself at risk. There's no question. ES: And. . .You know, it's difficult to measure those sorts of risks and health outcomes JA: Right. ES: . . . Is this a point of conversation you return to often, with your doctor? JA: Oh, every visit. Every visit.

Negotiated by Mailman public health researcher, Ronald Bayer, an extreme example of this rift between the place of biomedical knowledge and the place of the individual and activism around AIDS in the 70s and 80s, ...the antagonism provoked by medicine's warning, Michael Lynch wrote in the Body Politic, a Canadian gay journal, 'Gays are once again allowing the medical profession to define, restrict, pathologize us.' To follow the advice of physicians would involve a renunciation of 'the power to determine our own identity' (Bayer, 1989). In 1983, with pressure from the Centers for Disease Control,

many leaders in the gay community were able to respond to the challenge and caution of removing gay men from the blood donor pool, at risk of treatment with contaminated blood to haemophilia patients. Public knowledge of the medical consequences evinced, ...the challenge posed by the available evidence about the risk of AIDS in blood products by seizing the 'political initiative with a call for voluntary withdrawal of gays from the donor pool.' Whatever the role of self-defense in the protection of individuals from sexual exposure to the threat of AIDS, recipients of transfusions were defenseless in the face of contaminated blood. Gay leaders were uniquely situated to underscore the obligation to act responsibly in the face of the threat of AIDS (Bayer, 1989). Insofar as somewhat of an ironic turn, this protective measurethe metaphor of bloodwould turn out to be a much lesser offense to the gay community than the injunction upon civil liberties calling for public health officials to close the bathhouses in San Franciscothe metaphor of sweat and semen. Neither in the sick 'body of the politic' nor its constituent 'blameworthy' gay members, could the era of the early 80s have allowed the metaphoricity of actual bodily fluids and pathologies to mandate any such real fluids. Exclusionary policies, rather than concerns about stigma and privacy which Bayer emphasizes was what the era first and foremost had deemed utterly consequential. Compare what has, or hasnt, changed in the consequences of practices in the name of protecting the public interest, to a case of the rights of patients dated as far back as 1920: the Supreme Court of Nebraska in 1920. In that case, a man who was visiting a small town was seen by a physician who was also the physician for the hotel in which he was staying. The physician diagnosed syphilis and advised the patient to get out of

town, or he would tell the hotels owner. The case is the leading precedence for statutes needed to release medical records, thus taking private rights into a nominal and subordinate status to the public health. When the patient remained in town, the doctor notified the landlady, who disinfected his room and placed his belongings in the hallway. The court decided that the doctor has the right to reveal only as much information concerning a contagious disease as was necessary for others to take proper precautions against becoming infected, and that his actions under the circumstances were justified. (Annas, 2004). If not directly contiguous with the history of AIDSoutput from many of the gay community at the end of this centuryJamie's 2011 comments on HIV/AIDS, drug use, and gay lifestyle in New York and San Francisco certainly puts into context the much earlier 1982 commentaries. By way of innumerable public accounts of the behavior of gay men in the press, the rationale behind a Hobbesian dictum, a 'Multitude of men are made One Person', takes the controversy over promiscuity's risks to a heightened level of public awareness and political embodiment (cited in Healy, 2011). Bayer too cites Randy Shilts, in the New York Native: By the mid 1970s promiscuity was less a lifestyle than an article of faith. . . Before long an entire subculture and business network emerged catering to drugged out alcoholic gay men with penchants for kinky promiscuous sexual acts (Bayer, 1989). What can be heard as a medical narrative in the act of becoming, can also be taken to be implications outside of one's control, while still within one's own stated opposing viewpointsthose set against the medical and journalistic accounts.
JA: Because, you can't trace the source, of the disease. . . ES: . . . and, no . . . symptomatic red flags. . . . JA: Right, totally asymptomatic until I was at the gym in San Francisco and noticed the red spots. But no, you know, fatigue, or signs of STDs. In fact, I've never had an STD in my life . . . which is peculiar to me. ES: (laugh) whatspeaking of peculiaritieswhat

JA: (laugh) ES: . . . seemed to be most odd or peculiar, over the course of your experiences from diagnosis onwards? Any things that seemed, so, 'not traceable' or unrecognizable? . . . Or, things just 'off the map' that you couldn't really account for? JA: Well. . . hmm. . . . So some of it has to do with my particular sexual behavior. Because, and this is like really meaningful within the gay male community. Because, sexually, I'm constructed to be what's called, a top, which is . . . that I do not, get penetrated.

Cultural critic and gender scholar, Leo Bersani, argues in a remarkable study, Homos, of such an identity politics. He speaks on behalf of gay men in plainly stated terms, ...not that homosexuals are better than heterosexuals. Instead, it is to suggest that same-sex desire, while it excludes the other sex as its object, presupposes a desiring subject for whom the antagonism between the different and the same no longer exists....what may be distinctively human is the interposition, between the need and its satisfaction, of scenarios of desire that select the agents of our pleasure (Bersani, 1995). Jamie's subsequent interviews speak even more precisely than his initial interview had to this point and counterpoint of contention:
ES: That's interesting. Does any moment in your past recall a time that the powers that be or what culture would dictate as traumatic, to you seemed nothing of the sort? Are there definitive moments where, in the narrative, if you will, where you would shirk at the notion of trauma? Or, even the notion of shame? JA: No greater example than being told you have AIDS. But then I'm thinking about the realization of being a homosexual. Now, to them ES: the realization of others about you? JA: Two things. One, my self-realization, because I may have said in the past, for me, I really know of no other sexuality, so I never went through a period of 'oh my god, I'm not straight'. ES: Of coming out? JA: Exactly. Right, to me sexuality was always gay. Now some people may have thought of that as a traumatic experience. Or need to define that as a traumatic experience, but for me it wasn't that at all. So perhaps that's another example of, but I'm not sure. ES: I think so, so there's no carrying of stigma or shame, because it was perfectly developmental. JA: Exactly. Totally. And there was no trauma like, 'oh my god, I'm not going to have a wife and kids' so none of that. So none of that social, societal baggage that comes along. So that 'traumatic' realization that my lifestyle was not going to be conventional was not traumatic to me at all. Okay.

Jamie's particularly poignant and perceptive comments on the social stigmatization of a traumatic heteronormative complianceor lack of any developmental stage of noncompliance in his caserecalls the gay and lesbian academic response to the feminist philosophy of Monique Wittig. Leo Bersani, glossing Judith Butler, asserts of this

philosophical boundary, whether real or symbolic in Jamie's lived experience: Unlike racism, homophobia is entirely a response to an internal possibility. . . . Homosexual sex especially sex between menis a threatening boundary trespass, a site of danger and pollution for the social system represented synecdochally by the body (Bersani, 1995). When we think of the self-selecting antagonisms in terms of unruly and unstable contradictions, healthy/sick, hetero/homo, the following questions and issues posed of illness narratives in representation, must be factored. The interviewer is asked to make a list of just such crucial matters to 'take into consideration' before and after interview: -if any gender/ethnic/age/sexuality differences between impacted the interview -what sorts of personal emotions/reactions did the interview generate -if the interview process was easy or difficult and why -choosing a location -the process of interviewing including comfort level of both parties -the individuals acceptance/lack of acceptance of their illness initially and now -if this illness has impacted their family, occupational, romantic, social life and how -their self-concept, self-confidence, self-esteem -impact on their relationship to the medical community and how -body language was what the subject was saying consistent with what they were implying through body language, attitude and tone (DasGupta, 2009) Ameliorated by off-weeks with Jamie, the ethnographic immersion in his story afforded time to read through much of the work of the community of AIDS scholars. Additionally, reflexive ethnography and narrative medicine shared primacy in equally punctuating the transcription work with secondary sources. The interview's account of past events in Jamie's life, can't help but be present to the ideologies at work and informing the dialogue in four sessions over the course of six months. Yet, in a process of tape recording, transcribing, repeated listening and reading of transcription's spaces, what comes to the fore is a narrative of AIDS that is of personal and political 'gaps'. From interview-to-interview changing notions of disease, and, from
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transcript-to-transcript drawing out a number of sources that have informed Jamie's personal life, the narrative of health has formulated, arranged, and absorbed its own retelling of accounts as a result of an inevitably time-elapsed process. The recapitulated result, such a version of storytelling, accounts for a subjectified data collection more akin to fieldwork methods in narrative ethnography, then say, oral history. Time and narrativebased telling, fourfold, allotted both interviewer and interviewee the metaphor of AIDS itself. AIDS is cultural construction, or written, as a series of narratives, Thomas Couser reminds us, ...and perhaps hardest hit by the epidemic, gay men. As Paula Treichler has said, Whatever else it may be AIDS is a story, or multiple stories, read to a surprising extent from a text that does not exist: the body of the male homosexuall (Couser, 1997). The process of contextualized and encapsulated 'archeology of knowledge', which has been altogether misattributed to the gay man in cultural discourse, came to the fore more than once during the series of interviews and transcriptions. Methods of disclosure and the account's revision in its telling, interview to interview, in effect multiplied time's continued always already repetitions with difference. Not least, one-remove from the interviewee's primary account in real-time, the ethnographic 'writer of a narrative, whether fictional or not, confronts certain technical, strictly literary, problems: how much space to give the narrator . . . the greater burden of explanation required . . . [m]ore technical approaches through discourse, prototypes, case histories, and potted biographies can only be a preparation, serving to return us to the greater complexity of the natural setting. (Beatty, 2010). In consideration of a just and serviceable right to tell Jamies AIDS narrative apart from biomedical and cultural authority, how much space we still indeed do find we ought give others to do the same.

Citations and Sources AIDS, PUBLIC HEALTH, GAY IDENTITY, and CULTURAL REPRESENTATION: Bayer, Ronald. (1989). Private Acts and Social Consequences Bersani, Leo. (1995). Homos Crimp, Douglas. Ed. (1988). AIDS: Cultural Analysis/Cultural Activism Epstein, Julia. Altered Conditions Philipson and Posner. Ed. (1993). Private Choices and Public Health: the AIDS Epidemic in an Economic Perspective AIDS, AUTOBIOGRAPHY and NARRATIVE REPRESENTATION: Couser, G. Thomas. (1997). Recovering Bodies: Illness, Disability, and Life Writing The New York Times (May 2001). Early H.I.V. Therapy Found to Sharply Cut Spread, on page A1, The New York Times, Friday, May 13, 2011 Smith, Sidonie and Julia Watson. (2001). Reading Autobiography: A Guide for Interpreting Life Narratives. Sontag, Susan. (2001). Illness as Metaphor, AIDS and its Metaphors LITERATURE AND MEDICINE, ILLNESS, and ETHICS: Annas, George J. (2004). The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients Barrett, Andrea. (2005). 'The Sea of Information' Best American Science Writing: 2005 Bersani, Leo. (1986). The Freudian Body Butler, Judith. (1997). The Psychic Life of Power: Theories in Subjection Charon, Rita. (2006). Narrative Medicine Siebers, Tobin. (2004). Literature and Medicine Vol. 23, No. 2, Fall 2004 CULTURE, ETHNOGRAPHY, MEDICINE and ANTHROPOLOGY: Beatty, Andrew. (2010). 'Emotion, Narrative, and Ethnography' American Anthropology Vol. 112, No. 3, Sept. 2010 Healy, Margaret. (2011). Bodies politic: somatic politics and 'meaning making' in medicine and literature