Herve Guibert’s voice reaches powerfully beyond the diary of 1991, beyond the ordinary and vital struggle of hospitalization; and the finality of death; it even exceeds the excellent introductory and concluding commentaries of David Caron and Todd Meyers. We have its publication (1992) and re-publication (2016) partly to thank for that. It is a particular voice that provides an account not only of an affliction of the eye, cytomegalovirus infection, and the immune system failure that inaugurates it, namely HIV, but of the medical encounter and an existential confrontation with pain and death that is both singular and universal. In this hospitalization diary, Guibert’s is a voice that points as much to the historically situated experience of AIDS, of hospitals, and of French public institutions, as it does to experiences and conditions elsewhere in other times. It is an account whose accent indeed invites other accounts; draws them together in solidarity; and defies the forces of (in)efficiency, standardization, and dehumanization that characterize many a social response to plague. I write from South Africa, where voice and representation of and in AIDS are acute questions.

In his introduction, David Caron draws out Guibert’s capacity to show the system of “organised humiliation and subjugation of patients within an institution whose purpose, it seems, is to do just that” (4). His account is composed of the minutiae of ordinary deprivations, exposures, and dressings down. The human experience that emerges, not from this or that description, but from the strength of the voice (modulated constitutively by the translator, to be sure), is what resonates so powerfully with South African experiences not only of AIDS, but also of affliction beyond AIDS, through forms of public discourse and institutions.

Is this not the power of a literary voice such as Guibert’s, to enter into call-and-answer with a chorus of other voices? The whole question is a difficult one: what kind of public, by means of what kind of literature, is able to attend to this quality of experience, both of HIV now that it has become a chronic illness, and of public health care, as a southern African (and global) problematic?

What happens if we consider Guibert alongside the brilliant Zimbabwean writer Dambudzo Marachera who died of HIV in 1987 at age 35? Through Flora Veit-Wild’s biographical efforts we have an appreciation of his life and literary efforts. Or Yvonne Vera, who was also silent about her HIV status, and died age 40? Or Fana Khaba, aka Khabzela, the popular South African DJ who died in 2004, memorialised in Liz McGregor’s account? What of Nkosi Johnson, who died in 2001 at age 12, an “icon of the struggle for life”, according to Nelson Mandela? Or Phaswane Mpe (Welcome to Our Hillbrow), Zackie Achmat of the Treatment Action Campaign and Judge Edwin Cameron?

South Africa has become the epicentre not merely of a plague, but also of a literary response that has helped to make of HIV a social fact and a political object (Woods 2013). From Packard and Epstein’s (1991) early critique of social science of HIV, we have a voluminous archive of public health, physiology, virology, and ethnography. But not many grapple with the difficult question of experience, of the self in relation to this experience. In pulling the literary threads together to see the weave of the structure of experience of HIV and of its painful entailments, what can be said of the question of voice and silence and the constitutive destruction of sensuous life? Kylie Thomas argues, in Impossible Mourning, that the question of representation is at the heart of the invisibility of those (the multitudes) who have suffered and died of HIV in South Africa — and that while HIV has appeared large in the public sphere as an undifferentiated figure of plague, the experiences and lives of those who have lived and lost through HIV have gone publicly unmourned. Tim Woods (2013) argues that a sustained literary response since the mid-2000s has helped to reveal the ways in which HIV raises semiotic and political complexities, amongst other concerns, to engineer a “symbolic reorganization of subjectivity in the public sphere.”

Just as health as a constitutional right and public good entered into South African life after 1994, the terrible irony of HIV^[1] shattered the dream of a life of freedom and flourishing, as a general aspiration, and sharpened the desperate need for a working health system for all. (In 2016, the state has begun to plan seriously for a National Health Insurance that might overcome the constitutive wound of a history of racialised access to healthcare). Shula Marks’s history of the nursing profession in South Africa is crucial reading here for an understanding of the complex dynamics of race and class in the forging and destruction of nursing and its post-Apartheid legacies. For a more proximate account of experience in a contemporary South African medical ward, see Le Marcis and Grard’s (2015) ethnography of “care-givers’ ethics in action”^[2] — the tight embrace of nurses, patients, and the afflictions of epidemic South Africa give a sense of the difficulty of thinking about, and enacting, care. The inimitable Improvising Medicine, Julie Livingstone’s (2012) searing account of life and death in a cancer ward in Botswana, captures something of the complexity of care, on all sides, in the midst of structural deficiency, in the period before mass treatment became available. The descriptive powers of the historian are marshaled intensely here to try to bring the reader very close to the agony of the cancer ward, and the efforts of surgeons, patients, families, to bear up under impossible conditions.

Jonny Steinberg’s Three Letter Plague tries to get close to experience, in a more ordinary register; Didier Fassin’s When Bodies Remember offers a theory of experience with HIV; Ross Parson’s One Day This Will All Be Over offers an account of the pain of children with HIV in Zimbabwe; Patti Henderson’s ^[3]A Kinship of Bones^[4] captures exquisitely the delicate navigation of care, shame, and dying in the mountains of rural KwaZulu-Natal. These are compelling ethnographic accounts, replete with the powers and limitations of narrative and voice that attend this literary technique. One can think of the first full length feature film in isiZulu, Yesterday^[5] (2004^[6]), as coming even closer to figuring the experience of HIV in the rural former Bantustan of Zululand, and the tragedy of a failed health care system, but, again, the challenge of representation^[7] is critically in question^[8].

In Cytomegalovirus, we have the unnerving directness of an author acutely aware of voice and throat, perspective and vision, diary and death. A report from the frontline of a war still raging — and not simply the physiological challenge to “global health” that bedevils serious efforts to cancel the transmission of the disease; but equally a struggle, collective and existential, to bring into relation the self and the virus, in a way that grasps the unnecessary injustices of suffering, of medical care, and the jettisoning of the human qualities and capacities of ourselves in the midst of physiological decline and finality. From an intimate record of the self in the midst of despair, we now have a powerful ethical and political tool in which the techniques of the self at stake are made available to us anew via this generous republication and commentary. We are burdened immensely by this untimely gift of Guibert’s.

 

Notes

^[1] See especially Deborah Posel’s Sex, Death, and the Fate of the Nation (2005).

^[2] In de Herdt, Tom; Olivier de Sardan, Jean-Pierre. Real governance and practical norms in Sub-Saharan Africa : the game of the rules, Routledge, pp.160-185, 2015

^[3] http://press.uchicago.edu/ucp/books/book/distributed/A/bo13213213.html

^[4] http://www.ukznpress.co.za/?class=bb_ukzn_books&method=view_books&global%5Bfields%5D%5B_id%5D=423

^[5] http://www.altfg.com/film/yesterday-by-darrell-roodt/

^[6] http://www.imdb.com/title/tt0419279/

^[7] http://www.tandfonline.com/doi/abs/10.1080/02500160508538001?journalCode=rcsa20

^[8] http://quod.lib.umich.edu/p/passages/4761530.0010.006/–film-review-hi1-rendiyesterdayhi1-2004?rgn=main;view=fulltext

 

Thomas Cousins is a social anthropologist with particular interests in health, labour, kinship, and science studies. He completed a PhD at Johns Hopkins University in 2012 and now teaches in the Department of Sociology and Social Anthropology at Stellenbosch University.