The People of Act Up Paris against Patient Hervé Guibert

Benjamin Gagnon Chainey


‘I tell myself that this book’s raison d’être lies only along this
borderline of uncertainty, so familiar to all sick people everywhere.’[1]

Hervé Guibert – To the friend who did not save my life


Hervé Guibert’s first “AIDS writings” – namely his works To the friend who did not save my life, and the subsequent Compassion protocol – count among the most powerful and complex opuses dedicated to AIDS and the suffering it engenders. Despite their impact on sociocultural debates and on medical and ethical controversies, especially during the AIDS epidemic in France, some critics accused Guibert of navel-gazing and of turning his nose up at the community and its humanistic values. Among the most notorious accusers was Didier Lestrade, one of the founders of Act Up Paris, the French arm of the famous New York City-based organization. In his book dedicated to the history of the organization, Lestrade – in the collective’s name – writes in a chapter whose title unequivocally translates as ‘Against Guibert’ (I translate):

For Act Up, everything is simple: reading AIDS is fighting AIDS. Guibert, as a literary expert, could not see the links between the disease and a broader political stake. For him, AIDS was almost an individual adventure. The disease and the suffering did not draw him to a humanistic facet.[2]

Didier Lestrade commits here a gross error in reading: he is unable to move past first-level, referential reading.[3] (In fact, his error could be extrapolated to encompass all  “AIDS writers” of the 1980s and 1990s who were, for the vast majority of cases, offering a first-person testimony of their own experience.) Lestrade makes this mistake when he assumes that discourse about one’s body, whether Guibert’s or another sick person’s, is in itself separate from the political. By stating that Guibert’s ‘autopathological’ work is individualistic – because it is not directly anchored in collective advocacy which would be the only valid form of humanism – Lestrade walks into his own trap. While he equates reading with struggle, he implies that he cannot read between the lines of Guibert’s ‘AIDS writings.’ Political struggle is not always where one expects to read it, and if reading is a form of struggle, one must read well to fight against the right target, and make sure one doesn’t get shot with one’s own weapon by aiming at an illusory adversary who was, all along, one’s mirror image. Literature is never to be read literally. Hervé Guibert, suffering from AIDS, tells us:

The IMR pictures had revealed ‘doubtful zones’ in the white matter of my brain. Remembering is difficult for me. I have difficulty concentrating, reading, or retrieving a memory. Yesterday, when I began writing this, despite fatigue and a stormy weather that made everything cloudy, the infamous vibrios of white phosphorous light twinkled between my eyes and the page, preventing them from keeping a line of conduct.[4]

Didier Lestrade appears oblivious to the fact that all of Guibert’s works, even the most intimate and those that do not mention AIDS, are fundamentally traversed by a deep sensitivity to the Other. Sometimes in an obvious way in their themes – see for instance My valet and I, Suzanne and Louise, My parents, or Crazy for Vincent, to name a few – and at other times more subtly at the formal level – as in the AIDS writing we discuss here – Guibert’s discourse is in fact an interdicourse that the reader must delve into to reveal the Others behind the ‘I’. At the heart of his writing on illness, Hervé Guibert opens his body/language to another reality than his own. As the diagnoses of his own HIV and that of his lover and companion in the struggle, Jules, become unequivocal, his discourse becomes all the more equivocal, in front of a “fast-approaching truth that would hurl [them] into another world, after all, and another life, so to speak” (FL 129).

Indeed, despite the apparent individualism of his ‘introspection’ – which is in itself debatable when it comes to a published introspection, shared with the Other – the writing of Guibert is resolutely plural: extrovert. Polyphonic under its intimate appearance, it acts in the same way as language, which Mikhail Bakhtin, the father of plurilingualism, described in this way: “language is a social medium and all words carry the traces, intentions, and accents of the utterers that used them before.”[5] Hervé Guibert constantly loads up his own subjective suffering with that of the Others in him, before him, as much as that of the Others facing him. His suffering oscillates and resonates with the body of work on AIDS of his time, and with the “other life” Hervé and Jules fear so much, the “other life common to all AIDS sufferers” that literary critic Stéphane Spoiden describes:

[A new life] that is not regulated by an introspective search or a deep reflection following the Socratic principle “know thyself.” In its place, we find instead the principle of self-care, which operates a double movement: one, centripetal, of the egoistic withdrawal, and the other, centrifugal, turned towards others and nature[6].

Indeed – and that may be where Didier Lestrade was misguided in his reading – Guibert is fascinated with his own body and mind. However, this fascination does not proceed from an introspective dynamic: on the contrary. In the opening of his first published text, in 1977, La mort propagande (Propaganda Death), over a decade before he was infected with HIV, Guibert writes:

My body is a laboratory that I offer as an exhibit, the only actor, the only instrument of my organic ravings. Partitions on a fabric of flesh, of insanity, of pain. Observing how it functions, collect its performances. […] No sooner does a deformity happen, no sooner does my body become hysterical, than I deploy a transcription mechanism: eructation, dejection, sperm as the product of wanking, diarrhea, spits, catarrh of the mouth and the ass.[7]

Here extremely explicit in his autocorpographic display, Guibert’s writing would become more and more ambivalent as it offered more of his body/language to read. At first sight grossly vulgar, Guibert’s autocorpographic writing would prove to be cunning: it drapes its licentious nudity in apparently contradictory interdiscourses, discourses of the other that nuance the brutality of his nudity, as the scientific interdiscourse in this short passage from the same text: ‘equipped with a ophtalmologist’s eyepiece, a set of microscopic mirrors, science at the service of eroticism, stroboscoping distended flesh’ (MP 16).

Beyond the presumed gratuitous character of Guibert’s provocative exhibitionism, he overturns – early in his œuvre, and well before his AIDS writings that scandalized Lestrade – the discursive hierarchy in the fight against illness. He rejects a discursive hierarchy that puts the scientific and the political over the affirmation of the Self. In the case of Guibert – and perhaps in that of many other AIDS writers – this all-inclusive authority of scientific discourse is turned on its head. In Guibert’s hands, scientific discourse is no longer the smooth expression of a salutary collective authority. It is rather a tool at the service of each of the HIV-positive bodies that suffer, inside and outside of him. Guibert’s writing is contaminated with expressions directly and coldly borrowed from the dialect of medical caregivers. This interdiscursive contamination becomes more than an autobiographical engine, but a biographical engine that translates from one “other life” to the next, not unlike an anonymous medical record:

The deterioration in my blood continues from day to day; for the moment, my condition might be described as a case of leukopenia. My most recent test results, dated November 18, show a T4 count of 368, whereas a healthy man’s range is between 500 and 2000. The T4 cells are the leukocytes against which the AIDS virus directs its initial attack, gradually weakening the immune system. The final offensives, the pneumocystis and toxoplasmosis that ravage the lungs and brain respectively, are launched when the T4 count drops below 200, and these assaults can now be slowed down by the drug AZT. (FL 5)

The autopathographic writing of Guibert can only be transposed to others through the anonymity afforded by the “objective” scientific interdiscourse. The suffering it bears witness to is common, even though it is lived from the inside, and it becomes an experiential engine that turns his own suffering into empathy: “I’d been feeling so blah and helpless lately, and here someone else’s trouble was galvanizing me into action, a classic situation: now I felt brave enough to go to the rescue” (FL 164). Moreover, autopathographic writing becomes transposable to the collective through its fundamental ambivalence. As Julia Kristeva, the semiotician who introduced Bakhtin to Western Europe, explains, ambivalent writing “supposes the insertion of (society’s) history into the text, and of the text into history: for the writer they are one and the same thing.”[8] A social history is never without paradox, and literature likes to frustrate it: a social history that the writer, and among them Guibert, puts in front of its contradictions, at the price of scarring some of its untouchable virtues, including the humanism Didier Lestrade holds so dearly. Hervé Guibert upsets everyone because he does not side with those who pretend to fight on his behalf when he writes:

AIDS became the social raison d’être of many people, their hope for public recognition and a position in society, especially for the doctors who tried in this way to escape the boring routine of their medical practice (FL 118).

Let’s be clear: the goal here is not to deny the important role Act Up – Paris played, and continues to play, in the collective fight against AIDS and other moral and social inequalities, including medical and political scandals. We must, however, give justice to Hervé Guibert, who does not deserve to be depicted as a navel gazer, and to be sacrificed on the public altar in the name of a do-gooder humanism, simply because he did not put Act Up at the center of his writing. Indeed, and perhaps that is what irritates Lestrade, Guibert only mentions the organization once in his writings, and it is to criticize it by comparing it to Act Up – New York, instead of embracing it as a good HIV+ French patriot should:

He says the situation is catastrophic in the United States, it’s for this reason that the ‘happenings’ of the Act-Up group have some meaning over there, whereas in France they are just messing around: if you want to be well treated, properly looked after in America, Stéphane claims you have to be a white faggot, gay as all get-out and have a fistful of megabucks at the ready. Not a mainliner, because they get the medicines mixed up with the shit they shoot up with and muck up the experiments. […] One American journal accused me, after I’d given an interview, of being an out-and-out anti-American: that everything was being done, wherever needed, to save the sick whoever they were. (CP 70)

Didier Lestrade claims it is simple for Act Up to connect reading and struggling. Yet, when one reads badly, reads too fast, or reads only superficially, the struggle misses its goal. And that is a dangerous irony of collective advocacy: it excludes the people who cannot be inscribed directly into the group’s voice, those who sing out of tune, or just hum a different melody. Individual expression of suffering should not necessarily – and superficially – be in line with the dogma of collective discourse, even if it pretends to be humanistic and altruistic. Collective advocacy movements that fight for patients’ rights and against disease should remain sensitive to the part of individualism in the experience of suffering. The contentious case of “Act Up against Hervé Guibert” is eloquent: Didier Lestrade accuses Guibert of not having aligned with Act Up’s party line, and at the same time denies the part of individualism, or interindividualism, that is inherent to all collectivity, and to any humanism worthy of the name.

By putting his own suffering humanity at the center of his writing — the meeting point of interdiscusive paradoxes and contradictory body/languages — Guibert weaves in the humanism that Lestrade was unable to read between the lines. His humanism is collective and living, richly composed of individuality, and not only of the cohesive aggregation of voices. Guibert and Lestrade’s conflict reveals the porosity between politics and the political, with Lestrade admitting that the struggle may be waged from within oneself, between the (party) lines, in the depths of interdiscourse, and even in the most literary and intimate forms and experiences.

[1] Hervé Guibert. (1996). To the friend who did not save my life (Linda Coverdale, trans.). London: Quartet, p. 3. (From now on FL).

[2] Didier Lestrade. (2000). « Contre Guibert » dans Act Up : une histoire. Paris : Éditions Denoël. p. 307.

[3] ‘It goes without saying that the AIDS literature is characterized by first-person narration. If the identity of the “I” is at times problematic, it does not change the fact that the disease is told from the perspective of someone who is facing it intimately.’ Stéphane Spoiden. (2001). La littérature et le sida ; Archéologie des représentations d’une maladie. Toulouse : Presses universitaires du Mirail, p. 12 (I translate).

[4] Hervé Guibert. (1993). Compassionate Protocol (James Kirkup, trans.). London: Quartet. p. 211. (Hereafter CP)

[5] Constance Baethge (2012). « Dialogisme » in Aron, P., Saint-Jacques, D., Viala, A., Beaudet, M.-A., Bertrand, J.-P., & Cerquiglini-Toulet, J. Le dictionnaire du littéraire. Paris: PUF, p. 182 (I translate).

[6] Stéphane Spoiden. (2001). La littérature et le sida ; Archéologie des représentations d’une maladie. Toulouse : Presses universitaires du Mirail. p. 82 (I translate).

[7] Hervé Guibert. (1977-2009). La mort propagande. Paris : Gallimard. pp. 7-8. (Hereafter MP, I translate)

[8] Julia Kristeva. (1978). Sēmeiōtikē = Recherches pour une sémanalyse. Paris: Éditions du Seuil. p. 88 (I translate).

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