HIV Stories Research Articles

Viruses, Vaccines, and the Erotics of Risk in Latinx HIV Stories and Covid-19

In 2019, I published Shared Selves: Latinx Memoir and Ethical Alternatives to Humanism (University of Illinois Press), in which I discuss contagion as a metaphor for embracing our shared materiality with others. Six months later, during the Covid-19 pandemic, neighbors were crossing streets to avoid each other.  Social distancing is, counterintuitively, asking us to view separation and seclusion as forms of solidarity. But how can we be solid if we are oriented against each other? Isolation itself has become contagious: sharing repulsion and rejection, measuring six feet of “social” distance from others. These spaces are made up of a variety of immaterial entities—ideology, fear, caring, and faith—and material ones like invisible microbes. This essay revisits my writings about radical kinship and shared materiality in the works of Tim Dean and John Rechy in light of this emerging ethics of distance. This focus is particularly important today as contagion, following history, is realigned with racism and xenophobia. Latinx communities are disproportionately affected by inadequate healthcare and disproportionately labor in “Covid clusters” such as meat-packing plants and automobile facilities. To rethink my earlier insights about Rechy, I turn to Rafael Campo (whose queer perspective as both poet and physician during the AIDS epidemic has something to teach us about the erotics, aesthetics, and microbiotics of risk) and Julia Álvarez (whose novel Saving the World shows how care and risk might intersect).

Medical Anthropology in the Time of COVID-19.

Medical Anthropology in the Time of COVID-19.

Enhancing the care of children with chronic diseases through the narratives of patient, physician, nurse and carer.

We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers, physicians, and nurses. By a textual analysis, narratives were classified on their predominant focus as disease (biological focus), illness (psychologic focus), or sickness (social focus). Sixty-one percent of narrative' text were classified as illness, 28% as disease and 11% as sickness. All narratives had a degree of illness focus. Narratives by patients and physicians on the one hand, and nurses' and mothers' on the other were disease focused. Narratives were also evaluated with respect to the type of medical condition: Illness was largely prevalent in all but Crohn's disease and HIV infection, the latter having a predominance of sickness most probably related to stigma. Narrative exploration proved a valuable tool for understanding and addressing the needs of children with complex conditions. Narrative approaches allow identification of the major needs of different patients according to health conditions and story tellers. In the narratives, we found a greater illness and disease focus and surprisingly a low sickness focus, except with HIV stories. Narrative medicine provides a tool to strengthen the BPS model in health care.

Oral Histories, Public Engagement and the Making of Positive in Prison

How might creative practices surrounding oral history contribute to public engagement and to historical research itself? These questions are considered here through a reflective account of the making of the audio drama Positive in Prison: HIV Stories from a Dublin Jail. Positive in Prison is based on oral histories of HIV/AIDS in the Republic of Ireland, gathered in 2016–17 as part of the Wellcome Trust-funded project ‘Prisons, Medical Care and Entitlement to Health in England and Ireland, 1850–2000’. This piece reviews the processes and practical considerations behind the making of the audio drama and its associated launch events, alongside a summary of the history of HIV/AIDS and of prisons that was being produced and shared. It also offers reflections on the advantages and disadvantages of this particular project in relation to public engagement, the uses of oral histories, and creative history-telling.

Migrating microbes: what pathogens can tell us about population movements and human evolution

Background: The biology of human migration can be observed from the co-evolutionary relationship with infectious diseases. While many pathogens are brief, unpleasant visitors to human bodies, others have the ability to become life-long human passengers. The story of a pathogen’s genetic code may, therefore, provide insight into the history of its human host. The evolution and distribution of disease in Africa is of particular interest, because of the deep history of human evolution in Africa, the presence of a variety of non-human primates, and tropical reservoirs of emerging infectious diseases.Methods: This study explores which pathogens leave traces in the archaeological record, and whether there are realistic prospects that these pathogens can be recovered from sub-Saharan African archaeological contexts.Results: Three stories are then presented of germs on a journey. The first is the story of HIV’s spread on the back of colonialism and the railway networks over the last 150 years. The second involves the spread of Schistosoma mansoni, a parasite which shares its history with the trans-Atlantic slave trade and the origins of fresh-water fishing. Finally, we discuss the tantalising hints of hominin migration and interaction found in the genome of human herpes simplex virus 2.Conclusions: Evidence from modern African pathogen genomes can provide data on human behaviour and migration in deep time and contribute to the improvement of human quality-of-life and longevity.

Older and Younger African Americans' Story Schemas and Experiences of Living with HIV/AIDS.

This paper reports findings from a study that compared older (n=21,≥age 50) and younger (n=96,≤age 49) African Americans' stories (N = 117) of living with HIV/AIDS to determine how they make sense of the experience. The purpose was to: (1) identify and describe the cultural models African Americans use to inform their stories of living with HIV/AIDS, and (2) to compare older and younger adults' HIV stories. To characterize the cultural models engaged in the telling of these HIV stories, we conducted schema analysis. Analyses documented six diverse schemas, ranging from "Stages of Grief", "12 Steps", "Wake Up Call", "Continuity of Life", to "Angry and Fearful", "Shocked and Amazed". Comparison conducted by age group showed older adults more frequently expressed their story of living with HIV as "Stages of Grief" and "Continuity of Life", whereas younger adults expressed their stories as "12 Steps" and "Wake Up Call". Findings contribute by documenting African American stories of living with HIV/AIDS, important heterogeneity in cultural schemas for experiences of living with HIV and differences by age group. These findings may help by identifying the cultural resources as well as challenges experienced with aging while living with HIV/AIDS for African Americans.

Misadventure in Muirhouse. HIV infection: a modern plague and persisting public health problem.

This story is of particular interest and importance to Edinburgh and Scottish medicine. It describes the events in one general medical practice in Edinburgh, the Muirhouse Medical Group, and their impact and relationship to the AIDS pandemic. For many, the origin of HIV in the UK is now history. Since the introduction of HIV/AIDS into the intravenous illegal drug using community, much has changed but problems remain that should concern policy makers and clinicians. Reflections on the recent history of the HIV epidemic among drug users in the UK provide important insights into risks for current policy making and the potentially problematic direction that policy has taken. Rather than starting from a pragmatic baseline of harm minimisation, with its low cost, high impact, prevention approach, the emphasis, and consequently the resources, has been on a model of recovery which fails to acknowledge the fragile control maintained by early intervention and supporting treatments. In 2015, the re-emergence of HIV in a vulnerable inner city population of people who inject drugs highlighted a policy failure. An ongoing epidemic could and should have been prevented, as should several other recent epidemics of other viral or bacterial infections in urban populations in Scotland. The story of HIV is full of controversy, denial, prejudice and stigma. At all levels across the world from national presidents, governments and public opinion, progress has been impeded by these problems. People using drugs have an additional set of problems: criminality, poverty and marginalisation from education and the supports of main stream society. These continue to hamper efforts to improve lives and prevent disease.

A New Struggle: Active Citizenship in Thembi Ngubane and the Bambanani Women’s Group’s HIV/AIDS Narratives

This article discusses South African women’s narrative and artistic responses to the HIV/AIDS epidemic, to include Thembi Ngubane’s radio broadcast “Out of hiding, into the world: Thembi’s AIDS Diary” and the Bambanani Women’s Group’s collection Long Life … Positive HIV Stories. Produced in South Africa for a global audience, these texts use narrative as a strategy for intervention through their multi-media representations of HIV/AIDS that challenge sensationalist, and often Western, accounts of the epidemic in Africa. This article claims that both Thembi Ngubane’s radio diary and Long Life represent the struggle against HIV/AIDS as a human rights issue, and that they both assert the significance of narrative as a form of activism that facilitates solidarity among women affected by HIV/AIDS. More specifically, this article argues that, collectively, the women’s communal and individual stories advance a form of active citizenship that incorporates narrative as a political strategy, challenges popular epistemic understandings of the HIV/AIDS epidemic, and demands a new version of health rights. Finally, this article considers issues of mediation and consumption in terms of the global audience that these narrative texts imagine for themselves in their effort to span national and continental borders and to develop new global communities.

A Review of HIV and Surgery in Africa.

HIV has a significant impact on surgery in Africa. Its’ influence has spanned a period of about 30 years. In the 1980s' Africa experienced a rise in the national prevalence of HIV spreading across East Africa through Southern Africa, and reaching peak prevalence in the Southern African region. These prevalence levels have affected four key areas of surgical practice; namely patient care, practice of surgery, surgical pathologies, the practitioner and more recently prevention. The surgical patient is more likely to be HIV positive in Africa, than elsewhere in the world. The patients are also more likely to have co infection with Hepatitis C or B and are unlikely to be aware of his or her HIV status. Surgical patients are also more likely to have impaired liver and renal function at the time of presentation. Therefore, HIV has affected the pattern of surgical pathologies, by influencing disease presentation, diagnosis, management and outcomes. It has also influenced the surgeon by increasing occupational risk and management of that risk. Recently in an ironic change of roles, surgery has impacted HIV prevention through the role of male circumcision as a significant tool in HIV prevention, which has traditionally focused on behavioural interventions. The story of surgery and HIV continues to unfold on the continent. Ultimately presenting a challenge which requires innovation, dedication and hard work in the already resource limited environments of Africa.

"I Created Something New with Something that Had Died": Photo-Narratives of Positive Transformation Among Women with HIV.

A dearth of research describes the strengths of women living with HIV (WLH), yet understanding these strengths can promote women's well-being and healthy behavior. This analysis explores positive life transformations among WLH through photo-stories. WLH (N = 30) from three U.S. cities participated in a pilot photovoice project to tell their story of HIV. The project included three group meetings, an individual interview, and a public exhibit. Using qualitative strategies of theme and narrative analysis we identified positive transformations in women's photo-stories. Participants were African American (83 %) and low income (83 %). Women described four major positive transitions in their lives including transformations related to healthfulness, spirituality, self-acceptance, and confidence. Despite challenges, WLH experience positive transformation and growth experiences. Understanding these transformative changes can shed light on women's motivation to make healthy life changes and thus frame strengths-based interventions for WLH. Photovoice itself is a potential strategy to promote WLH's strengths and health.

The Experiences and Coping Strategies of United Kingdom-Based African Women Following an HIV Diagnosis During Pregnancy

A qualitative investigation was conducted to explore the experience of African women living in the United Kingdom after being diagnosed with HIV during pregnancy. Participants (N = 12) completed a demographic questionnaire and participated in one-to-one semi-structured interviews. The interview addressed multiple personal, interpersonal, and systemic issues related to HIV, as well as HIV in the context of motherhood. Data were analyzed using interpretative phenomenological analysis. Themes that emerged included: (a) HIV being part of one's wider tapestry, (b) community and systemic influences and responses to HIV, (c) experiencing a different story of HIV, and (d) the mother-child relationship. Strikingly, the aspect of HIV these women reported finding most distressing was their inability to breastfeed, which seemed central to their cultural identity as mothers. Clinical recommendations and implications are made.

The unexplored story of HIV and ageing

The unexplored story of HIV and ageing

HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988 (review)

HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988 (review)

HIV Stories: The Archeology of AIDS Writing in France, 1985-1988

HIV Stories: The Archeology of AIDS Writing in France, 1985-1988

HIV Stories: The Archeology of AIDS Writing in France, 1985-1988 (review)

1002 Reviews vibrant account of the Les Temps modernes polemic and drawing out Camus's dissent from would-be infallible political theories and the killing they spawned. Yet Charbit rightlylaments the absence in L'Homme revolte of any sustained critique of European colonialism. He highlights the paradox whereby Camus, while attributing British and French colonial repression to '[le] meme prejuge irrationnel de superiorite raciale' (p- 33)> consigns the reflection to a footnote; and symptomatically, Camus's explo? ration ofhistorical revolt makes no reference to compelling examples ofethical protest such as that provided by Ghandi's non-violent resistance. While Charbit notes the failure of the 'Pensee de midi' to engage the political or philosophical imagination, Frank Planeille resituates the utopianist Mediterranean finale to the essay by invoking Camus's friendship and dialogue with Rene Char. Planeille's cross-reading of Char's 'Billets a Francis Curel' and Camus's conclusion succeeds in removing the label of philosophy that never adequately suited the essay. Further recontextualization is pro? vided by Mark Orme, who underscores the therapeutic dimension in the writing of L'Homme revolte: thus Camus, who, as a high-profile journalist at the time of the epurations, temporarily endorsed the death penalty, writes, as he himself confesses, out of a sense of 'dechirement d'avoir accru l'injustice en croyant servir la justice' (p. 108). The experience of ethical failure lived, crucially, at a personal level thus provides a significant vantage point from which to re-examine the essay. Camus's uneasy relationship with the philosophy of history and in particular with Christian and Marxist teleologies forms the dominant focus in the analysis of Francoise TrageserRebetez , whose microtextual reading suggestively explores light/dark, masculine/ feminine, and nature/history oppositions in Camus's rhetoric. Intriguing material on Camus's reception in North America in the post-war period emerges in two contributions: Konrad Bieber reflectson the seriously defective 1954 English translation of L'Homme revolte, while Fernande Bartfeld reconstructs Ca? mus's itinerary on his spring 1946 lecture tour. Whereas Claude Levi-Strauss, conseiller culturel in New York, arranged the US venues forthis still relatively unknown French author, Camus's earlier condemnation of Petain in Combat earned him a cool reception in francophone Canada. An appended 'Etudes' section contains three comparative studies: Benedict O'Donohoe 's engaging parallel reading of Sartre's 'L'Enfance d'un chef and Camus's 'Jonas'; an exploration by Brigitte Sandig of Christoph Hein's 1984 Der fremde Freund (L'Ami etranger) in the light ofL'Etranger\ and Hiroshi Mino's analysis of Lettres a un ami allemand alongside Bernanos's L^tre aux Anglais and Saint-Exupery's Le^re aux Francais. Royal Holloway, University of London Edward Hughes HIVStories: The Archeology ofAIDS Writingin France, iq85-1 g88. By Jean-Pierre Boule. Liverpool: Liverpool University Press. 2002. vii+184 pp. ?39-95 (pbk ?17.95)- ISBN 0-85323-568-6 (pbk 0-85323-578-3). Following the publication of Jean-Pierre Boule's consideration of Herve Guibert's writing, and in particular of the interplay between truth, fiction, and falsehood in Guibert's 1990s AIDS texts (in Herve Guibert: Voices of the Self (Liverpool: Liv? erpool University Press, 1999)), Boule here turns his attention to what he calls the 'pre-history' of AIDS writing in France. Unearthing six very differenttexts from a key period in the French epidemic, Boule's contention is that while the writings under consideration are largely obscured fromcurrent consideration, they constituted a field of discourse through which France's understandings and misunderstandings of the epidemic found legitimate expression, and in so doing, paved the way for the more MLRy 98.4, 2003 1003 literary opus which was to follow. This is not to say, however, that the texts examined here are without merit on their own terms. Drawing on theories of psychoanalysis, gender and masculinity, and social and cultural comment, Boule teases out the psy? chological figures and personal investments working within each text, as their authors address the reticences, interdictions, and struggles inherent in speaking about AIDS in France during the 1980s. In the process, he ties each ofthe texts discussed to what emerges as a crisis of national identity...

Review: HIV Stories: The Archaeology of AIDS Writing in France, 1985-1998

Review: HIV Stories: The Archaeology of AIDS Writing in France, 1985-1998

AIDS in French Culture: Social Ills, Literary Cures , and: La Littérature et le sida: archéologie des représentations d'une maladie (review)

Book Reviews Jean-Pierre Boulé. HIV Stories: The Archeology of AIDS Writing in France, 1985-1988. Liverpool : Liverpool University Press, 2002. Pp. vii + 184. With the advent of new treatments, critical work on the literature of AIDS has become scarce. In recent years, international attention has been largely redirected toward developing countries where AIDS rages on beyond the most pessimistic estimates, while a veil of silence has once again fallen upon Western countries where the epidemic is far from over, and from which most AIDS literature , whether fictional or testimonial in form, had originated. Jean-Pierre Boulé's new book, HIV Stories, focuses on the first decade of the epidemic in France where near complete silence about AIDS for years unleashed a public health disaster unparalleled in Europe at the time. It is from this period of so-called dédramatisation that Boulé unearths mostly forgotten texts and gives us a useful warning about what the consequences of our current silence could be. Not surprisingly, and although his theoretical approach is plural and adapted to each text, Boulé is most effective when he analyzes his corpus in the light of the cultural and political context of the period. The first part of the book is devoted to three fictionalized texts whose authors and publishers are revealed to be complicit with dominant exclusionary discourses of the time. Analyzing what he calls the "just punishment" narrative structuring some early AIDS writing, Boulé shows how the French literary establishment and traditions have contributed to the stigmatization of people with AIDS, particularly independent women and gay men whose non-normative sexuality is seen as the cause of their disease. In the second part, the book turns toward testimonial texts by Michel Simonin, Jean-Paul Aran, and Alain Emmanuel Dreuilhe, all three gay men and all three largely neglected today, but who have paved the way for such writers as Hervé Guibert and Cyril Collard, whose work was met with great enthusiasm a few years later. Why were these early gay witnesses ignored? Again the literary establishment , with the active complicity of the media and a seldom acknowledged Catholic tradition, managed to frame these first-person stories within the mode of confession (in the Foucauldian sense) and neutralize them as self-incrimination. It wasn't until the creation of ACT UP-Paris allowed the expression of a collective, combative gay voice that AIDS counterdiscourses started to emerge, and the epidemic was finally confronted with some degree of effectiveness. Sharply focused and often movingly written (particularly when recounting the injustices Simonin had to face), Boulé's study demonstrates the urgent need to periodize and historicize the epidemic. He takes us back to a time that only seems distant today because it uneasily reminds us that discrimination, hatred, and stupidity are not always the sorry prerogative of the fanatic fringe. Indeed, less than fifteen years ago, they were the norm. I hope this book will be translated and read in France, a country so utterly convinced of its inherent enlightenment that it can never face up to its not-so-glorious, not-so-distant past without tearing itself apart. David Caron University of Michigan David Caron. AIDS in French Culture: Social Ills, Literary Cures. Madison, WI: The University of Wisconsin Press, 2001. Pp. χ + 204. $19.95 soft cover. Stéphane Spoiden. La Littérature et le sida: archéologie des représentations d'une maladie. Toulouse: Presses Universitaires du Mirail, 2001. Pp. 232. € 16.50. Par les généalogies qu'ils élisent, David Caron et Stéphane Spoiden agencent des regards complémentaires sur les enjeux dont la littérature du sida a été et est toujours le théâtre en France. 98 Fall 2003 Book Reviews En optant pour La Débâcle de Zola et Le Journal du voleur de Genet, Caron démontre brillamment comment la métaphore de la dégénérescence dont l'homosexuel va devenir la figure emblématique a culturellement institué les paradigmes autour desquels les négociations sociales et politiques des identités sexuelles vont se jouer tout au long du XXe siècle. Si cette anxiété identitaire héritée du XIXe siècle joue...

HIV Stories: The Archeology of Aids Writing in France, 1985-1988 (review)

HIV Stories: The Archeology of Aids Writing in France, 1985-1988 (review)

HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988 (review)

HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988 (review)

Jean-Pierre Boulé, HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988

Jean-Pierre Boulé, <i>HIV Stories: The Archaeology of AIDS Writing in France, 1985-1988</i>