Private Writing, Political Action: Written AIDS Testimony in France, 1986–1993

In the 1980s, France suffered more than any other Western European country from the HIV/AIDS crisis. It produced a very distinct cultural response to the crisis, centred on autobiographical writing. These writers, all of them gay men, were initially condemned for their egotism, and are now largely forgotten (except for Hervé Guibert). I argue here that their private writing actually constituted an important form of political action. This article is derived from a paper that I presented at the conference on ‘ACT UP: Thirty Years Fighting AIDS’, at the University of York, 1 June 2017.

The pink triangle logo of ACT UP and the slogan silence = death
Silence = Mort (the slogan of ACT UP-Paris)

Unlike in the United States and Britain, The cultural response to the HIV/AIDS crisis in France in the 1980s and 90s was primarily centred on writing. Compared with other forms of cultural response, such as a play, a quilt, or collective artistic projects, this ‘AIDS writing’ was a distinctly individual experience, both produced and consumed in solitude.1 It was also, by some measures, singularly ineffective. The best known written works from PWAs (person with AIDS) of this period are Cyril Collard’s 1989 novel Les Nuits fauves (Savage Nights, made into a feature film in 1992) and Hervé Guibert’s 1990 work À l’ami qui ne m’a pas sauvé la vie (To the Friend Who Did Not Save My Life), but both these authors were condemned by ACT UP-Paris on the grounds that they perpetuated certain unhelpful phantasies of PWAs (the fear of the ‘PWA-as-murderer’, the appeal of the heroic, fatalistic ‘sacrificial PWA’), and failed to address the political dimensions of the crisis directly.2 Although ACT UP-Paris led successful activist campaigns and was very attentive to the public representation of PWAs, as depicted in the recent film 120 Beats Per Minute, it did not have the sort of close relations with writers, artists, and other cultural creators that were enjoyed, most notably, by ACT UP-New York.

There are complex reasons why the experience of PWAs in France was one of social isolation, to a greater degree than in other Western societies, and why their writing maintained a distance from the work of political activists. In short, disease in general was considered a private matter in France, and there was considerable resistance to the assertion of a gay identity and the very idea of a gay community, which, in the US and other Western societies, was at the centre of collective responses to the HIV/AIDS epidemic. As David Caron puts it, ‘in France, until the rise of ACT UP-Paris [in 1989] and the boom of the gay community since the early 1990s, AIDS had almost exclusively been constructed as a personal tragedy’.3

This article reassesses the nature of private, testimonial writing as a form of political action, through a presentation of the work of four writers: Michel Simonin, Alain Emmanuel Dreuilhe, Gilles Barbedette, and Pascal de Duve. The common characteristic of these very diverse works is the way that they simultaneously embrace writing as the quintessence of their isolation, and also find in the essential ‘otherness’ of writing the possibility of a community. Far from rejecting the political dimension of their experience as PWAs, these writers were deeply concerned with the relation between the individual and the collective, which was of fundamental importance to the political struggle in France.

The HIV/AIDS crisis in France

The first cases of AIDS to be identified in France occurred in late 1981. The epidemic was particularly severe in France compared with Western Europe in general, and throughout the 1980s and 90s there were roughly three times the number of reported HIV infections compared with the UK. There were several reasons for this: France had its own contaminated blood scandal, there was a woefully inadequate response on the part of the government, and the influence of the Catholic Church undoubtedly played a role in normalising homophobia, and also in supporting a ban on promoting the use of condoms until as late as 1987.4 Furthermore, the response of the gay community was slow and relatively ineffective, partly owing to a deep cultural and intellectual resistance to the very concept of a gay community.

I do not intend to address the controversial and complex issue of this apparent failure,5 but it is apparent in several of the testimonies discussed here that, at least in the 1980s, PWAs could not always count on the personal support or the political mobilisation of the gay community, such as it was. After the death of Michel Foucault from AIDS-related illness in 1984, his partner Daniel Defert and others founded the charity AIDES, broadly equivalent to Gay Men’s Health Crisis in the US or the Terrence Higgins Trust in the UK (founded in 1982 and 1983 respectively). In 1989 Didier Lestrade and others founded ACT UP-Paris, modelled on ACT UP-New York, which had been founded two years earlier.

In some ways, the context for cultural responses to AIDS was similar in France to the context in the US and the rest of Western Europe: AIDS reactivated powerful, long-standing myths of plague, social pollution, and divine punishment. Given the association of the syndrome with gay men, including its initial description as ‘gay cancer’, these myths solidified around a particular discourse by which AIDS was considered a ‘just punishment’ for supposedly ‘immoral behaviour’. This discourse was so prevalent that it was difficult for writers, especially if they were gay men, to address the subject of AIDS without in some way reinforcing these same myths, even if the intention was to confront them.6 Another similarity was that in France, as in the US, the cultural responses to the AIDS crisis were dominated by gay, white, largely middle-class men, and for all that this cultural work achieved, it did not represent the full breadth of the experience of PWAs.

But in France, as mentioned above, the cultural response consisted more of the individual experience of writing rather than the more collective responses found in the US. AIDS appeared as a theme in the novels of a number of established gay writers, including Dominique Fernandez, Yves Navarre, and Guy Hocquenghem. However, this paper will focus on the testimonial writing of PWAs, which did not enjoy anything like the literary prestige of the novel, but was at least able to draw on France’s rich tradition of life writing, which offered literary models for genres including the diary, autobiography, and the essay.

Jean-Pierre Boulé’s book on this topic from 2002, HIV Stories, identifies three general waves of testimonial writing:7 the earliest texts, written in the early 1980s, were effectively works of fiction by non-PWAs presented as testimony, which reinforced the stigma, moral panic, and a discourse of blame. In the late 1980s testimonies from PWAs began to be published which, through a truthful account of their own experience, attempted to challenge these discourses. And in the early 90s, a genre of more overtly literary writing by PWAs emerged, using a semi-fictional form. The most famous writers from this third wave were Cyril Collard and Hervé Guibert. Although the literary success of this last group of writers undoubtedly raised public awareness, they were far from successful in giving a voice to all PWAs, and in 1994 ACT UP-Paris itself criticised the uniform face of PWAs that they represented.8

Their success also had the unfortunate effect of obscuring the works of the earlier writers, who have now been largely forgotten.9 The writers that I shall discuss produced their testimonies between 1986 and 1992, and mostly belong to the second wave in Boulé’s periodisation. All of them were gay white men, and all of them were middle-class, highly educated, and worked as professional writers in some capacity, with the exception of Michel Simonin, whose testimony is particularly valuable precisely because it bears witness to the poverty and social exclusion that he faced. Another thing that these writers had in common is that they found themselves living alone, two of them having been abandoned by their partners after they had been diagnosed as HIV-positive, and two of them having already lost their partners to AIDS-related illness. In other words, they were not only isolated, but their isolation was characterised by an individual experience of rejection or loss.

Michel Simonin

The publication of Michel Simonin’s testimony under the title Danger de vie (Danger of Life, a play on warning signs that read ‘danger of death’) in 1986 was a landmark event — now almost forgotten — and can be credited with breaking the taboo in France of PWAs speaking out against the authority of the medical establishment.10 This was well before the founding of ACT UP-Paris in 1989, but the theme of Simonin’s book could reasonably be summarised by the ACT UP slogan ‘silence=death’. His book is also the most straightfoward example of the connection between writing as a private practice and as a form of political engagement. Compared with the other writers, Simonin was far more precarious in his social and material situation, and also more emotionally troubled, particularly in his difficult relation with his sexual identity. He had worked as a social worker and teacher, in gay bars and clubs, and occasionally as a prostitute. He lost work repeatedly, both because of his homosexuality and because of his HIV status, and he sometimes found himself homeless. Simonin describes his earlier life as being characterised by repression and silence, because of his homosexuality and, for a time, because of drug addiction:

It was a terrible ordeal. I lived through it in shame, in despair, in pain, and with the unbearable obligation that I imposed on myself at every moment: never to speak of it, just to be silent, always silent!11

He was diagnosed as HIV-positive in 1984, which triggered another crisis but also led to a major turning point in his life. This turning point was a stay of six weeks in a sanatorium in the French Alps, a rare period of calm, freedom from material difficulties, and separation from his tumultuous life in Paris (he had just been abandoned by his partner), during which he wrote prolifically:

Six weeks of conversation with myself (sometimes unbearable), during which I kept my diary like a street urchin emerging from his voluntary amnesia and putting his lost memory back in motion; a difficult task, because it’s much easier to suppress a painful past than to go in search of yourself.12

His diary from this time makes up the largest part of Danger de vie, and the diary itself contains long retrospective passages making up an autobiographical account from his birth up to his present time. The writing process provided him with a strong therapeutic effect. He feels a ‘furious desire to write’, and ‘a need to tell [his] story, to communicate, whatever the cost’.13 This desire is partly a reaction to the painful silence of his earlier life, and also a way of combating the isolation and social exclusion that accompanies his condition:

For me, the virus that is squatting inside me is less dangerous than the isolation to which some would like to condemn me.14

Certain parts of his writing have particular therapeutic effects: his diaristic writing satisfies Simonin’s newfound attachment to life. He finds a great value in even the mundane details of his repetitive daily routine at the sanatorium and writing the diary helps him to explore and hold on to this experience. In his autobiographical writing, the effort of remembering his past life is sometimes painful for him, but it is ultimately a healing process through which he tries to understand the course of his life and make up for lost time.15 Both his diary-writing and autobiographical writing allow Simonin to document the treatment of PWAs in society, and the misrepresentations that he sees in the media, and he finds some satisfaction in expressing his anger on this subject.

While there are immediate personal benefits to his writing, it is also conceived as a public act from the very beginning. His private writing is always orientated towards the outside world as an antidote to his sense of isolation, but it is also imagined as a political act in breaking a wall of silence that surrounds PWAs. Although his whole life has been marked by silence, speaking as a PWA he is most indignant at being silenced by the medical establishment, and his testimony strikes a blow at this repressive force:

They tell us, from on high, “that it is unacceptable for a patient to speak publicly, and we should not be speaking about AIDS at all, because it is a mortal illness”! […]

It’s attitudes like this that motivate me: I’m a grown-up, responsible patient, this is the end of the twentieth century, and nobody will stop me from speaking, but especially not old reactionaries who still live by notions from the previous century!…16

As for the audience for this political act, Simonin addresses his testimony both to a community of PWAs (not necessarily other gay men), and to the general public. In the first case, he hopes that his own struggle will provide a motivation for other PWAs in his situation.

I would like to restore confidence to those men and women who have lost hope, especially those who are in my situation, and to tell them that nobody has the right to judge us, isolate us, reject us.17

With regard to the general public, he is trying to overcome what he sees as society’s wilful ignorance of the reality of the AIDS epidemic:

I’ve watched it every day, this society that does not want to know, in order not to feel guilty. […] It ignored the virus, now it is fleeing from it, whatever it might be. That is why […] I am bearing witness and will continue to bear witness as long as I can, because this concerns everyone.18

Simonin’s death in December 1987 meant that he would not witness the founding of ACT UP-Paris, but his testimonial project was remarkably congruent with the organisation’s aim to make PWAs so visible that the public could not claim to be unaware of the crisis at hand.19

Alain Emmanuel Dreuilhe

Alain Emmanuel Dreuilhe’s life was very different from Simonin’s. He grew up in Cambodia and Vietnam, pursued his studies at the prestigious Institut d’études politiques de Paris, and later lived in New York, where he worked as a translator and a correspondent for the French magazine Gai pied. When his book Corps à corps: journal de sida was published in 1987 (published in English translation in 1988 as Mortal Embrace: Living with AIDS),20 his cultural capital allowed him to present his work on the leading French literary television programme, Apostrophes.21

The most distinctive feature of Dreuilhe’s writing is his extensive use of the military metaphor to discuss his own battle with HIV and the wider social struggle that the HIV/AIDS crisis gave rise to. The use of the military metaphor was controversial in itself (as discussed by Susan Sontag in AIDS and its Metaphors), and was more characteristic of the US context than of France.22

By using an extended metaphor to reflect on his situation, Dreuilhe is already writing in a more literary way compared with Simonin’s meticulous record of his daily life, but there is also, in Dreuilhe’s case, a larger gulf between the diary that he wrote and the book that he eventually published. As readers of his book, we are faced with a series of personal essays. He tells us that he adapted this text from his diary, but the process of editing has been so extensive that we can no longer see a clear trace of his daily writing, and we can only really learn about his initial experience of writing from his direct comments about it. He tells us that he began writing a diary for the first time when he found himself isolated after the death of his partner, and the diary’s first function was to provide him with company:

No longer having anyone to talk to, the lone protagonist of my drama, I started writing a diary, the first in my life, from which these pages are drawn. Now we were two, like Anne Frank and her diary.23

On the suggestion of his therapist he started to develop his use of the military metaphor for discussing his illness. However, he never showed the diary to his therapist, and he claims that the diary itself became more useful therapeutically than his actual therapy. The therapeutic effects include an improvement in his morale, a way of combating his fear, and constructing a meaning around his time spent living with HIV:

I am no longer afraid because these pages have purified me, giving […] a meaning to these three years of cares, troubles and bereavements, an exclusively personal meaning.24

He finds his time more valuable than ever, and like Simonin, he considers the time after his diagnosis to make up a whole lifetime of experience in itself:

This disease offers us an abridged version of life, which is also a bitter parody of life. Our new date of birth is the day when we discovered that we were carrying AIDS within us.25

Characteristically, he also thinks in elaborate metaphors when he considers the relation of his individual perspective to the collective experience of PWAs. First, his diary is compared to David Hockney’s photo montages, in which a series of photographs make up a composite picture of a room or subject:

This diary is an individual experience but, as in David Hockney’s photo montages, I have tried to present a series of snapshots of the same room that we inhabit, this psychological space that has become the small universe of PWAs and that we can leave only when we die.26

In Dreuilhe’s case, the individual perspective of each written fragment depicts one part of the collective experience of PWAs, and furthermore, this form of representation reflects the inevitably fragmentary nature of the AIDS crisis in general, in which no individual or group can claim a complete understanding. A second metaphor connects Dreuilhe’s writing more directly with the sort of political action that was then just beginning in the US:

It was through the most solitary act there is, the act of writing, that I realised that a whole generation was struggling in the darkness of the epidemic, which fell upon us so suddenly. I became convinced that if I too lit a candle in this darkness, perhaps I could, with the meagre light of this diary, push back a little the shadows that oppress us. This candlelight march would also allow us to be counted, while we are alive, instead of only counting the dead.27

He imagines his testimony as a small candle within the darkness of the AIDS epidemic, isolated and ignored, but when this candle takes its place in a candlelight march with other PWAs it contributes to a much greater political change.

But beyond the metaphors, what does the political role of the text actually do? It is above all aimed at rallying a community of PWAs. Like Simonin, Dreuilhe is motivated by an impression that PWAs are being silenced, but he makes a more specific claim that PWAs need to find a common language of their own (in contrast to the French policy of ‘dédramatisation’ and the resistance to communitarianism). He sees a need for new forms of art that could unify PWAs in their struggle, but he suggests that the fictional works about AIDS produced so far were, at best, well-intentioned entertainment.28 As a solution, he recommends the language of the military metaphor, and his own form of literary testimonial writing. An advantage of Dreuilhe’s use of military metaphors is that it allows for a social critique through comparisons with other historical (and military) contexts, and it also allows PWAs to inscribe their experience in History (with a capital H). This in itself fosters a sense of community, not only between contemporaries, but in relations across time, both with those whom Dreuilhe calls his ‘homosexual ancestors’, and with those who will read his work in the future.29 This capacity of literary writing to transcend the immediate circumstances of the individual, or of the present moment, is touched upon by both Simonin and Dreuilhe, but becomes more central in the testimonial writing of Gilles Barbedette and Pascal de Duve.

Gilles Barbedette

Photo portrait of Gilles Barbedette
Gilles Barbedette

Even more than Dreuilhe, Gilles Barbedette was a part of the literary and intellectual establishment. He worked in literary publishing and translation (translating, among others, Vladimir Nabokov and Edmund White), and wrote several novels. He had also been involved in gay political activism before the HIV/AIDS crisis, and was a co-founder of AIDES in 1984, so we might expect to find discussion of the practicalities of political activism in the diaries published posthumously under the title Mémoires d’un jeune homme devenu vieux (Memoirs of a Young Man Turned Old) in 1993.30 In fact, this practical involvement has almost no place in his diaries, and the political dimension of his writing lies elsewhere. The diaries begin just before the death of his partner Jean Blancart in December 1986, and soon after this bereavement he expresses his confidence in literary writing as his greatest resource:

Here I am back at square one: alone, but equipped with some literary know-how and convinced that ink is the only hope I have ever had.31

Like the other writers discussed here, Barbedette found himself alone, but this is above all a diary in which he mourns the death of his partner and, since he knew that he was himself HIV-positive, he also foresaw his own death through the experience of his partner.32

His writing process brings some of the same therapeutic effects that we have already seen (it calms his anxiety, provides insight into his own situation, and gives pleasure and meaning to his life),33 but Barbedette has a more distinct conception of the essentially political nature of writing itself:

To write is to resist. To write is to live. To write is to affirm — even in one’s very form or style — the unique and singular nature of existence.

Yes, I am writing and I want to write to continue to give meaning to my days. And I feel keenly that I am still alive, that I have an obligation to avenge and celebrate those whom I loved so much and who have died. Who could do it in my place?34

For Barbedette, writing can be a manifestation of individuality and value, but as a writer he also feels himself to be a survivor of a collective catastrophe, with all the responsibility that this brings to mourn and remember those who have died. There is therefore a paradox at the heart of Barbedette’s writing, which is also present to some degree in the other testimonies: the diary shores up the self in the affirmation of his ‘unique and singular’ existence, but it is also an experience of otherness that dissolves the self, allowing a connection with ‘those […] who have died’ (principally his partner Jean).

In this respect, it is significant that Barbedette’s own story does not end with a straightforward publication of his testimony. His diaries were left after his death in 1992 as a disordered mass of manuscripts, which were (according to his wishes) interpreted, arranged, and presented for publication in 1993 by his friend René de Ceccatty. Ceccatty himself published a book after the death of Barbedette, L’Accompagnement, in which he recounts his experience of accompanying Barbedette in his final days.35 The political dimension of Barbedette’s writing is therefore not concerned with a direct appeal to the general public, nor does it interpellate a gay community or a community of PWAs. Instead, it sets up a series of acts of bearing witness, providing testimony, and receiving the testimony of others. Beyond its initial therapeutic effects, it also has an exemplary role, demonstrating the importance of preserving the experience of individual PWAs, and responding appropriately to their testimony.

Pascal de Duve

Even more than Barbedette’s, the testimony of Pascal de Duve seems to lack any direct political engagement, and it is undoubtedly the most introspective of these works. But for this very reason it can show us the political nature of written testimony in itself.

De Duve moved from Belgium to Paris in 1987 to teach philosophy, and published a novel in 1990. When he started suffering from AIDS he was abandoned by his partner, and from May to June of 1992 he embarked alone on a round trip on a cargo ship from France to the Caribbean. He kept a diary of this journey, which was published in 1993 as Cargo vie.36

Like Simonin’s stay in the sanatorium, de Duve’s journey is uneventful in the extreme:

[This journey] was an exhilerating challenge: I went face to face with the immensity of the ocean, alone with myself, to meditate, laugh, cry, and write my thoughts, my joys, my sorrows.37

He has chosen a situation that intensifies his isolation while he writes, and allows him to project his thoughts onto the seemingly infinite expanse of sky and ocean that surrounds him. His writing brings some of the same therapeutic effects that we have seen in the other texts, but he especially writes in order to face his fear of death, and to dwell on his newfound sense of wonder at life and nature.

He sometimes addresses and exhorts a readership of fellow PWAs, but the main political dimension of his writing lies in his conception of the importance of testimony itself, and especially written testimony that is read after the death of the writer. Although he insists on the individual nature of testimony (‘There are no two cases of AIDS alike. Its forms are infinitely rich’),38 he also presents himself as writing on behalf of other PWAs, to the extent that these ‘others’ seem to physically occupy him in the act of writing:

Write, persevere, and finish. Because I am the writing hand of my dumbfounded fellow PWAs, who wrap themselves in silence. I want to be an ambassador of hope in a land of despair.39

This view of testimony is explored in the diary through an extended metaphor by which de Duve’s individual experience within the the small, closed society on the ship represents the experience of PWAs in society as a whole: on the ship he finds himself having to keep silent about his HIV status, for fear of panic and persecution, or at best becoming an object of pity.40 But out of his fellow passengers, one woman shows greater interest and understanding, and de Duve therefore decides to write her a letter, to be read only after she has left the ship and will never see de Duve again. The text of the letter is included in the published diary, and in it he reveals his HIV status to her, explains himself, and says all the things that he would like to have said in person.

The situation of this letter tells us several things about the function of his written testimony as a whole: there are things that can be written privately, but only shared publicly with some sort of separation from the writer, whether it is through the transcendence of literature or the separation brought about by death. This testimony is primarily addressed not to the general public, nor to a community of PWAs, but to the individual reader who will relive his experience, and who will rise to the ethical responsibility of receiving this testimony. As in the case of Barbedette and his friend René de Cecatty, de Duve’s testimony was received and relayed by his friend, the Belgian writer Michel Robert, who published a series of letters entitled Pascal de Duve: lettres à un ami disparu (Letters to a departed friend, 2001), which aims to maintain their dialogue beyond the point of de Duve’s death in 1993.41

A political project?

Taken together, these texts seem to have more differences than similarities, and hardly constitute a coherent political gesture. With regard to the experiences they relate, Michel Simonin’s work provides the most abundant information about the difficulties faced by PWAs, including the exclusion and lack of support that he received from the gay community based in the Marais district of Paris, the condescension of the medical institution, the sensationalist and prejudiced treatment of HIV/AIDS in the media, and the inadequacy of social policies. At the other end of the spectrum, Pascal de Duve’s work relates little more than a short period of reflection.

In terms of form, all of the texts were initially composed as diaries, but they tend towards various other genres such as autobiography (Simonin), the essay (Dreuilhe), and a writer’s notebook (Barbedette). There are, however, certain commonalities in their experience of the act of writing itself, and their attitude towards the publication of their work. In each case, the writing of a diary is connected to their isolation, and more than this, they embrace writing as an extreme form of solitude (for example, de Duve leaves the loving support of his family in order to write his diary on a long sea voyage). In the first instance writing offers a compensation for this isolation, by reinforcing a sense of self that is under threat,42 and providing a range of other therapeutic effects. For each of the writers their diary becomes an ideal friend who is perhaps more beneficial than a therapist (as Dreuilhe claims).

But beyond this ‘conversation with [oneself]’,43 writing also involves a form of otherness. In various ways the writers anticipate an existence for their works that transcends their immediate situation and their individual experience, and to fulfil this role as a work of testimony the text needs to be separated from its author. The works are, in a sense, posthumous by design, even though two of them were published in the author’s lifetime. In some cases the writers interpellate a community of PWAs (not necessarily conceived as a gay community), in the hope that their testimony will bring such a community into existence, mobilising it and providing it with a common language, but for Barbedette and de Duve only one reader is addressed, a sufficiently sympathetic reader who will receive and sustain their testimony.

This minimal act of political engagement is a long way from the targeted activism practised by ACT UP-Paris, but it illustrates Barbedette’s claim that ‘to write is to resist’,44 to resist being dehumanised, or forgotten, or reduced to a statistic. This political function does not expire with the realisation of a specific goal (a policy change, a new drug, a reduction of stigma): it continues to demand of us that we rise to the ethical challenge of receiving this testimony, and sustaining the distinctive, individual voices of those who wrote it.


If you would like to buy any of the books discussed here, please avoid Amazon and support a local bookshop, or find these books online at Biblio.com.

1David Caron, AIDS in French Culture: Social Ills, Literary Cures (Madison, WI: University of Wisconsin Press, 2001), p. 117.

2ACT UP-Paris, Le Sida: combien de divisions? (Paris: Dagorno, 1994), pp. 171–80. All translations from French texts are my own.

3Caron, AIDS in French Culture, p. 117.

4Jean-Pierre Boulé, HIV Stories: The Archaeology of AIDS Writing in France, 1985–1988 (Liverpool: Liverpool University Press, 2002), pp. 9–15, 21.

5For two opposing views, see Frédéric Martel, Le Rose et le noir: les homosexuels en France depuis 1968 (Paris: Seuil, 1996, revised edition 2008) and David Caron, AIDS in French Culture. Whereas Martel emphasises the denial and failure of the gay community in the early 1980s and argues on this basis against ‘communitarianism’ (p. 669), Caron considers that the problem was that a gay community did not exist as such, and that this is a reason for the adoption of ‘communitarianism’ in place of the French tradition of republican universalism (pp. 151–61).

6Christopher Robinson, Scandal in the Ink: Male and Female Homosexuality in Twentieth-Century French Literature (London: Cassell, 1995), pp. 118–19.

7Boulé, HIV Stories, pp. 5–6, 26–27.

8ACT UP-Paris, Le Sida: combien de divisions?, p. 176.

9Boulé, HIV Stories, p. 5.

10Michel Simonin, Danger de vie (Paris: Séguier, 1986).

11Ibid., p. 125.

12Ibid., p. 21.

13Ibid., pp. 121, 22.

14Ibid., p. 240.

15Ibid., p. 21.

16Ibid., p. 98.

17Ibid., p. 304.

18Ibid., p. 303.

19ACT UP-Paris, Le Sida: combien de divisions?, p. 11.

20Alain Emmanuel Dreuilhe, Corps à corps: journal de sida (Paris: Gallimard, 1987). Dreuilhe, Mortal Embrace: Living with AIDS, trans. by Linda Coverdale (New York: Hill and Wang, 1988).

21Although this platform was not accessible to Simonin, it is interesting to note that on the programme of 30 October 1987 Dreuilhe was seated next to Dr Willy Rozenbaum, one of the researchers involved in the discovery of HIV, who had written the preface for Simonin’s book. Apostrophes would also later launch the huge success of Hervé Guibert’s À l’ami qui ne m’a pas sauvé la vie when he appeared on the programme in 1990. Simonin had, however, appeared on television speaking of his experience as a PWA (rather than presenting his work as a writer), in circumstances described at length in Danger de vie.

22Consider the opposing views on this metaphorical discussion of AIDS in Susan Sontag, AIDS and its Metaphors (New York: Farrar, Straus and Giroux, 1989), and D.A. Miller, ‘Sontag’s Urbanity’, October, 49 (1989), 91–101. In France a general policy of ‘dédramatisation’ aimed to avoid panic about AIDS and limit discussion to a ‘rational’ and ‘scientific’ discourse; Caron, AIDS in French Culture, pp. 174–75, n. 3.

23Dreuilhe, Corps à corps, p. 60.

24Ibid., p. 189.

25Ibid., p. 191.

26Ibid., p. 13.

27Ibid., p. 123.

28Ibid., p. 46.

29Ibid., p. 178.

30Gilles Barbedette, Mémoires d’un jeune homme devenu vieux (Paris: Gallimard 1993).

31Ibid., p. 30.

32Ibid., p. 12.

33Ibid., pp. 129, 132.

34Ibid., pp. 150–51.

35René de Ceccatty, L’Accompagnement (Paris: Gallimard, 1994).

36Pascal de Duve, Cargo vie (Paris: Jean-Claude Lattès, 1993).

37Ibid., p. 43.

38Ibid., p. 102.

39Ibid., p. 65.

40Ibid., p. 133.

41Michel Robert, Pascal de Duve: Lettres à un ami disparu (Tournai: La Renaissance du livre, 2001).

42Arnaud Genon, speaking of Hervé Guibert, describes this threat to the self and identity of PWAs as an ‘autobiographical fracture’; ‘Hervé Guibert: Fracture autobiographique et écriture du sida’, in Claude Burgelin, Isabelle Grell and Roger-Yves Roche (eds), Autofiction(s): colloque de cerisy (Lyon: Presses Universitaires de Lyon, 2010).

43Simonin, Danger de vie, p. 21.

44Barbedette, Mémoires d’un jeune homme devenu vieux, p. 150.

About Sam Ferguson

I am a researcher in French literature, and freelance translator, with a wide experience of teaching French literature and language at university level.
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