The unspeakable act: 'performing' AIDS deaths by Alan Beck
For 'AIDS Cultures' journal

EastEnders Episode 766 Scene 13 25 June 1992
Gill's Hospice Room

GILL (Pause) It's been great fun, hasn't it?
MARK: (Pause) Yeah.
(Gill closes her eyes, still smiling a bit)
GILL: Yeah.
(She takes a deep breath. Seems to settle into sleep. Over fifteen seconds or so her breaths become shallower with increasing pauses in between until there are no more breaths at all. Mark looks to George [the gay Nurse])
MARK: (Pause, low) Is that it?
GEORGE: (Gentle) Yeah. (Pause) That's it.
(Dawson, 1993, 219-220)


Death is not an event in life. We do not live to experience death. Our life has no end in just the way in which our visual field has no limits.
(Wittgenstein, 1961, 6.4311)



This article looks at the fictionalising and 'performing' of AIDS deaths, in a range of films and also in autobiography. The films range from the popular to the 'aesthetic-activist', and are both gay and heterosexual. The main focus of analysis is through the cultural scripts offered to audiences in how the end-of-life is represented. Other areas for analysis include: models of consciousness suggested by these works, and modelling death through language and the body. But it is also argued that death remains problematic, compelling and traumatic.




Death is the utter loss of consciousness. Death scenes in fiction allow audiences to acknowledge their mortality, while many of the characters display, on their bodies, the stigmata of death. This article looks at the fictionalising and 'performing' of AIDS deaths, mostly in film and autobiography, the cultural scripts offered to audiences and how the end of consciousness is represented. The 'unspeakable act' title is taken from the ancient Greek term for the ritual moment, in animal sacrifice, before the killing. To avoid ill-omened words, all the participants guarded their silence, and this was followed by the knifing of the beast and the ritual screams of the women (Burkert, 1983, 4-5). So ritual, speech and silence are important here; while the artist's task is to make the 'unspeakable' into the speakable, and so the performative.

Any death breaks consciousness and dialogue. It is the end of the subject. Performed deaths on film and stage are speeded-up versions ('cheating' death), telescoping a natural process as mimesis (the 'fiction world') often does, and they are almost always structured around the cutting-off of dialogue. However, I find the topic of representing the fictional AIDS death perplexing. As Lizbeth Goodman says, 'AIDS is still a special case' in performance (Goodman, 1996, 203). The sociological fact is, relatively few people have been involved in such terminal (palliative) AIDS care, certainly in the UK with some 12,000 deaths. There are also issues of stigma (Dollimore, 1998, 294-5) and confidentiality. James Miller also summarises many 1980s AIDS fictions (films, TV, novels) as 'bourgeois cautionary tales' and 'analgesic deathbed dramas' (Miller, 1992b, 6).

The following are some of the leading discussions of HIV/AIDS and fiction: Crimp 1988a, Miller 1992a, Murphy 1993 and Dollimore, 1998, 294-327, with Duncan 1998 on autobiography. These books and collections of essays deal especially with culturalist issues, connecting aesthetics with activism, which I will only touch on here. Two of the films I discuss are heterosexual, not gay-positive. Examples below (mainly 'And Then There Was One', 'Longtime Companion' and 'Silverlake Life') reflect the first generation of AIDS culture works, while 'Blue' (Derek Jarman's film of 1993) and Kushner's stage plays 'Angels in America' (1992-3) mark a new 1990s response. I have mentioned only one stage play (Kushner 1994), for a couple of reasons. As yet in my research, I have not discovered full-length deathbed scenes in stage plays. And secondly, films and print, as texts, yield more for analysis rather than the stage direction, 'dies'. In William Hoffman's play 'As Is' (1985), for example, the curtains are drawn around the dying patient. And as John Clum explains in his chapter on AIDS dramas, deaths are avoided for reasons of defiance and 'the exigencies of post Ibsen drama' (Clum, 1992, 45).




Not telling of death

The end-of-life is not for the telling, if we adopt a positivist stance. Hamlet's traveller never returns from that 'undiscovered bourn' (III,1). Wittgenstein, in the quote above, and many other philosophers, flatly deny that death is an 'event' (as Lucretius, De Rerum Natura - 'On the Nature of the Universe', Book III, etc.). Countering this tradition are Freud's death drive, death and the erotic (Thanatos and Eros), and the long tradition that to know how to live, and indeed, to philosophise, one must first know how to die (Montaigne etc.). This is fully covered in Dollimore 1998.

An artistic representation of death is not the empirical truth, but shaped by a creative imagination (Guthke, 1999, 256). Note 1 The autobiography is the lived experience and a proleptic vision of death. This is all the more relevant if the artist is HIV+ and imaging his own end-of-life (Dreuilhe 1988, Jarman 1993 and 2000, Brodkey 1996) or if we are offered documentary images of the AIDS deathbed - a breaking of more than one taboo ('Silverlake Life', film, USA, 1993 and Smith 2000; Sobchack, 2004, 231 n.7).

But there is here a 'collapse of witnessing' - to appropriate a term used of Holocaust (Shoah) survivors and their trauma, where there are not witnesses, broadly, but only those inside the event (Laub, 1995, 66-8). Intriguingly, Freud termed death, in his discussion of the death instinct, 'unrepresentable' ('unvorstellbar', Campbell, 1996, 178). In death as a biological event, the act of witness cannot be made during the actual occurrence. (See also Bauman, 1992, 2-3.)

However, Dollimore, in his masterly book, challenges the relativising of death in recent cultural theory (Dollimore, 1998, 127) - statements that death is a 'cultural construct' and 'a for ever inaccessible space beyond representation'. This, he says, 'evades the classic philosophical problems of ontology and epistemology'.

So, while we have some insight into the ontology of death as spectators, and even as detached philosophers, we can never know of the phenomenology of the end-of-life. That latter assumes a subject who is immersed in the experience and trying to communicate about it.

We can push further at this contradiction, so central to this article, by referring to research on the phenomenology of consciousness. This article began 'death is the utter loss of consciousness'. What dies? The physical body dies with the ceasing of neuron clusters in the posterior and anterior cortex that serve cognitive functions ('cortex' in Eysenck, 1990). The science of consciousness offers, fortunately, 'understandable research' (so Baars, 1997), but this is what David Chalmers calls the 'easy problem' (Chalmers, 1995). Subjectivity presents a particularly 'hard problem'. For death also means the end of consciousness and what we intuitively think of as an observing self. The duality is this: 'the perceiving subject is itself defined dialectically as being neither (pure) consciousness nor (physical, in itself) body' (Madison, 1992, 94). Conscious experience is always tied to an individual, first-person perspective, and also we attain subjectivity through physiological systems. No wonder Block warned that consciousness is a 'mongrel' (Block, 1995, 227), connoting radically different things.

The artwork's interest is in those introspective reports, the working of consciousness as it provides information about mental experiences. The artist can work both from verifiable public report, as scientific evidence is defined, about those neurone clusters, for example, and also the perceiving subject. But that latter cannot be tested objectively (Chalmers' 'hard problem'). So, to finish on this central contradiction, here are three more attempts at this 'hard problem' from consciousness studies. But there cannot be conclusions.

Philosophers of mind have used 'what it's like' to refer to phenomenal consciousness or subjectivity, ever since Thomas Nagel's question, 'What is it like to be a bat?' (Nagel, 1974). For Nagel, the key to understanding whether bats or humans are conscious is to know what it is like to be a bat or a human. Being conscious is having an 'inner life' or a 'point of view' (Nagel, 1974, 436). Nagel concludes '[W]e cannot know what it is like to be a bat even if we believe that there is something it is like to be a bat'. The bat has the extraordinary sensory modality of echolocation. From my human sensory array, I cannot deduce what it would be like to experience echolocation. Nagel demands proof of 'observer empathy' as the criterion for consciousness. But I cannot, presumably, answer 'what it's like to die' when the neurone clusters cease.

Secondly, there is the Ability Hypothesis - my experience constitutes knowing that it is like. (Lewis, 1990, who defines this concept, gives the example of tasting Vegemite for the first time, and then remembering and recognizing it subsequently.) But I have not yet tasted death.

Thirdly, there is Bernard Baars' Global Workspace (GW) theory (Baars, 1997). GW describes mental architecture as a working theatre, doing real things, just like real theatres, with focal consciousness acting as a 'bright spot' on the stage. Attention is a selective 'spotlight'. The stage corresponds to 'working memory', the immediate memory system in which we talk to ourselves, visualize places and people, and plan actions. Conscious and unconscious systems shape events in the bright spot. But, again, as consciousness goes, the theatre goes dark. World-processing ceases. We are left with a doubling of David Chalmers' 'hard problem', an insoluble 'mysterion' (Nagel).

To summarise from Virginijus Kincinaitis (on 'objective' photoreportage): 'In order to see himself dying, man should die while staying alive. Death itself should become a self-cognition at the very instant of destructing a conscious being. That's why man needs the vision of a real death in detail'. (Kincinaitis, 2000, 78)



AIDS death as a trauma

Dollimore, who begins his immense survey with the topic of AIDS, sex and death, also stresses that death is mysterious, devastating and at times unendurable for those who survive (123). The AIDS deathbed is often experienced as a trauma for carers which can impel some to narrative accounts of consolation and healing, and maybe, to as-if identifications. Survivors and artists in this Pandemic make use of available cultural scripts of death, and sometimes shape them anew.



Melodrama category and the documentary, autobiographical, etc.

Especially in popular culture, the AIDS death scene performs somewhat the function of the classical Roman 'consolatio' (originally a letter of consolation and philosophical advice). Words and images are selected to reorient mourners towards the living and further, to tranquillise, to foreclose on the full significance of the trauma. So I look at these below - what I term the 'melodramatic' AIDS deaths. These are: Gill in the B.B.C. soap 'EastEnders' (1992), Vinnie in 'And Then There Was One' (film, USA, 1994), 'A Place for Annie' (film, USA, 1993), and gay films, 'It's in the Water (USA, 1997) and 'Jeffrey' (USA, 1995). I prefer to say that the scene has been filtered through the melodramatic imagination.

In the rest of my discussion, the documentary, autobiographical, etc. ('Silverlake Life', Dreuilhe, Brodkey), there is no hiding from pain and unmeaning. The authors do not offer fantasies of power and control over HIV. We meet images of biological death and not just social death. (These terms will be explained below.) We meet with powerful emotional and intellectual responses to AIDS and the end-of-life. These offer the deeper 'consolatio': to recover from the post-traumatic stress of repeated grieving and the grieving to come. Autobiography, documentary and fiction 'witness' authentically to those who feel haunted or possessed or who suffer contempt, or who are activists, or who are just curious, or who face an uncertain future. The truth of artistic vision is also intriguing intellectually, even if it may not tell us enough about the nature of death. This leads me on later to more consideration of models of consciousness, language and the body.



Cultural scripts of death

Seale, in his book, Constructing Death, which I have found extraordinarily valuable, defines these cultural scripts as:

… discourses on death … making available a variety of meta-stories to dying and bereaved people for the interpretation of their biographical situations …
(Seale, 1998, 4)

Such scripts include the inner adventure, the resurrectionist, the dying person as chief mourner and the celebratory. Note 2

There are many fictional examples, and across the media, of characters who complete their personal 'death trajectory' (Seale, 1998, 183), though they enter at different points on this journey. Perhaps those I discuss here descend in various ways from powerful nineteenth-century archetypes in fiction and opera. I will consider below where they differ. Here are some archetypes, just briefly: Little Eva in Uncle Tom's Cabin (1852), Tolstoy's The Death of Ivan Ilyich (1886), Dumas Fils' La Dame aux Camélias (1848 with Verdi's La Traviata) and, of course, Dickens. The list is unending and I do not aim to give a typology of fiction deathbed scenes. However, Clum, 1992, 48-9, traces links between Camille and AIDS dramas. Note 3

High art and popular culture differ, not surprisingly, in the cultural scripts they manipulate for the dying role. Derek Jarman's film, 'Blue' (UK, 1993), is the 'leap into the void', an image from the artist Yves Klein, and a meditation on his own death so soon to come, in 1994. The film's visual track is famously a single-colour, non-representational blue, and so refuses determinacy and the author's own presence. It is, with some others, an example of the 'falling out of time' for someone with an unfavourable diagnosis (Stacey, 1997, 10) and the falling out of society.



Modern society not 'death-denying'

Art has often met Death and its rituals before. There are profound differences between fictionalising death and what any of us discover when we are involved in terminal (palliative) care, the ontology of death, as I mentioned above. Walter Benjamin, in his 1936 essay 'The Storyteller', points out that in the Middle Ages there was hardly a room in which someone had not died. However, in modern times:

… dying has been pushed further and further out of the perceptual world of the living.
(Benjamin, 1977, 94)

Perhaps death is both denied and yet ever-present. Seale holds that modern societies are not 'death denying', but rather that the 'social organisation for death in late modernity is remarkably active, realistic and death accepting' (Seale, 1998, 3). Note 4 There is however, he says, a 'hiding away' or 'sequestration of mortality'. So it could be said that there is a double sequestration in many AIDS deaths, due to societal stigma. Watney emphasises how 'AIDS creates such magnitudes of loss that now death is where gay men experience life most keenly as a group' (Watney, 1992, 334, 355; Watney, 2000, 223-5).

I want to examine some of these cultural scripts, which as Seale summarises, are discourses on death and exercise 'considerable influence over individuals' and their capacity to understand themselves as dying. They are crucial in the 'identification of a 'dying role' (33). This is in line with 'the late modern ethos of active, reflexive formation of self-identity' (106). The broadcast media have a particular role to play 'in writing the cultural scripts that many people appropriate' (6). Part of the activity of what could be called 'AIDS Cultures' in 1980s films, plays, documentaries and novels, the first generation of such, was the pioneer writing of new cultural scripts, including the equivalent of the medieval 'Ars Moriendi'. This was the manual on how to behave on one's Christian deathbed (47) and the long tradition that life was a kind of continual dying. That instructional role continues through the different phases of the AIDS Pandemic, and through the work of support and nursing groups. I have chosen, to begin with, some examples from popular culture because these are the most diffused.




Little Eva

Let's go back to the nineteenth century, with an 'archetypically satisfying scene' and a character whose 'greatest act is dying' (Douglas, 1996, 3) - Little Eva in Harriet Beacher Stowe's Uncle Tom's Cabin of 1852 (Stowe, 1981, chapter 26). Through sixteen pages, we read of 'a lingering and sainted death of consumption' (Douglas, ibid.). She takes on the prophet role to the slaves ('You must remember that each of you can become angels'). She urges her father to free his slaves. At midnight there came the change, 'when the veil between the frail present and the eternal future grows thin … the dawning of immortal life in that childish soul' (Stowe, 426). Mother, Father and Uncle Tom himself see 'the large clear eyes rolled up and fixed' (427). Eva had not been able to speak before, but now -

"O, Eva, tell us what you see! What is it?" said her father.
A bright, glorious smile passed over her face, and she said, brokenly, - "O, love, - joy, - peace!" gave one sigh and passed from death unto life!
"Farewell, beloved child! The bright, eternal doors have closed after thee …"

So archetypal is this nineteenth-century scene, that I have quoted it here. It seems an 'Ur'-source for Vinnie in the film 'And Then There Was One' (USA, 1994), about to be discussed below. There is a similar use of the angel motif, the last words, the reaching for the sublime metaphor and the sanitisation of symptoms. Eva's consumption (lungs filling with fluid, fever) is summarised only as 'she struggled for breath'. Ann Douglas comments:

If "camp" is art that is too excessive to be taken seriously, art that courts our "tenderness", then Little Eva suggests Christianity beginning to function as camp. Her only real demand on her readers is for self-indulgence.
(Douglas, 1996, 4)



'La Dame aux Camélias'

A key strand in my discussion is the aesthetics and imaging of the AIDS death, and indeed AIDS as 'the most ascetic of therapies' (Miller, 1992c, 260, ironically). I now turn to the Lady of the Camelias herself and the 'topos' of the ' Camille-like cough' in AIDS films, plays and novels (Waugh, 1992, 128). Dumas Fils' La Dame aux Camélias appeared first as a novel in 1848, was adapted for the stage in 1852, followed by Giuseppe Verdi's opera La Traviata (1853) and the Garbo film version, Camille (1936). The heroine dies of tuberculosis and her friend moralises: 'Much will be forgiven you, for you loved much'. Susan Painter has usefully pointed to those aspects of the novel and play which are the result of Dumas' misogynism and 'virulent attacks on women' (Painter, 1988, 123). The death scene in the novel can so be understood:

A foul odor emerged, despite the aromatic herbs with which [the room] had been strewn.... The eyes were simply two holes, the lips had gone, and the white teeth were clenched. The long, dry, black hair was stuck over the temples and partly veiled the green hollows of the cheeks.
(Quoted in Clum, 1992, 50)

TB was one of what could be called the metaphorical diseases of the nineteenth century and it crystallised cultural anxieties about sexuality and morbidity (Sontag, 1991, 33). In fact, Clum titles his chapter on AIDS dramas 'Displacing Camille', and discusses various examples of gay plays which seek to dismiss the stigmata of guilt and the spectacle of 'the moral and physical "disease" of homosexuality' (41, referring to Watney 1988). Camille raises gender issues, the model of aestheticised illness and emotionalised sacrifice within melodrama. With that preparation, I now want to look at five examples from this popular category.




Melodrama and celebratory death: Gill in 'EastEnders' (B.B.C. TV 25 June 1992)

Consider the EastEnders' death of Gill (Susanna Dawson). She is heterosexual, a person with AIDS (PWA) and married in a scene shortly before. The script itself has been quoted at the top of this article. It may have been the most popularly known fiction example of a PWA death in the UK, especially as 'AIDS intensifies this element of being struck down in the midst of life' (Seale, 1998, 107). She dies in her hospice room, with her husband Mark (Todd Carty) present, HIV-positive too, and he was one of the longest-surviving characters in this B.B.C. soap. Gill exemplifies the 'good' death scene, the 'heroic', in Seale's definition from his sociological analysis of cancer deaths:

… there was the opportunity to display great courage in the eventual facing of the final threat: death itself. The reward for those who completed this heroic task was the realisation and enactment of intimate emotions, in which the social bond between the dying self and others was affirmed.
(Seale, 1998, 173)

Gill's death is celebratory ('It's been great fun, hasn't it?') and in its brevity, reorients the audience towards the living. I will be emphasising this latter point below, when I summarise on this popular or melodrama category. Actress Susanna Dawson, who played Gill, in her book, Gill and Mark. EastEnders' Great Love Story, explained that she 'slimmed down to play the part, losing half a stone', that it 'took an hour each morning to do Gill's make-up', and that there was a medical team on hand giving her advice, for example about the 80% paralysis on one side of Gill's body (Dawson, 1993, 223-4). Also:

When it came to Gill's dying, I had to be taught how to change my breathing and how to relax completely. Apparently, you can't really do it, because when you die everything goes, so every muscle relaxes. This just isn't possible in a living person. … Underneath the bedclothes, they put a 'cage' of chicken wire over my chest and put the blankets on that. So when I breathed I didn't move the sheets and you can't see it.

These performance and body aspects will also be considered below.



'And Then There Was One' (film, USA, 1994): Vinnie's death

Here is another example from the American 1994 film, 'And Then There Was One', still regularly rebroadcast, about a mother, father and baby, all HIV-positive, and starring Amy Madigan. A TV magazine listing described it as 'based on a true story, of course, and predictably gut-churning', as first the baby dies and then the Yuppie father. The mother, who was infected via a blood transfusion during a miscarriage, is the 'One' still around at the end. I find Vinnie's death (the father) in his hospital room, a scene four and a half minutes long, compelling and fascinating. We find Roxy, his wife, continuing to reminisce to him:

Roxy: And you, you taught me how to love then. And no matter what, that love will never die.
(Music motif. Vinnie stares up above and lifts himself up on his elbows)
Roxy: What?
Vinnie: They're so beautiful
(Another music motif)
Roxy: What - what is it?
Vinnie: I never thought they'd be so beautiful
Roxy: What?
Vinnie: Angels.
Roxy: What do they want?
(Another music motif. Vinnie still staring upwards and his eyes filling with tears)
Vinnie: They want me to go with them.
Roxy: Then why don't you go?
(Vinnie stares at her. His index finger points to her. He is puzzled and then resolved.)
Roxy: I'll be OK. I promise.
(Another music motif. Vinnie resumes his stare upwards and his index finger moves to his lips and then down. Roxy kisses him on the lips. When she moves off, Vinnie's eyes are closed and he is at rest. He has died.)
Roxy: He's gone.

This ably mixes some death-scene scripts of long lineage - the resurrection-death, the last words, the coming of angels (now resurgent in American popular culture), the final kiss. I recognise the scene as powerfully affective bourgeois family melodrama, set in a rigidly moral code, unambiguously manichaean. Identification for the viewers at this death bed is narrowly structured. However, the specificities of AIDS-related illnesses - so overwhelming in Jarman's 'Blue' and his diaries - are almost eliminated. Vinnie's drip stand is discretely parked away from the bed and actor Dennis Boutsikaris does not, and physically cannot, incorporate symptoms such as body wasting and breathing difficulties into his performance. (See below on the body). I do not need to make the obvious point here about the sanitisation of disease in a popular film, but Vinnie's death is a rampantly 'theatrical' spectacle of suffering and vindication.

Jackie Stacey, in her deeply moving and analytical account of her own experiences of cancer, emphasises that cultural narratives of illness and dying 'offer a reassuring account of problems which have resolutions' (Stacey, 1997, 8). In these examples, and below, we meet a clear pattern of resolution, linear time and closure in the death trajectory. There are here issues of high and low, elitist and subcultural and popular. Popular culture can be serious and trivial and banal (Baudrillard), authentic and the opposite, oppressive and oppositional. Perhaps it is better to consider optimistic and pessimistic approaches afforded by the text, and how the popular text is 'supposed to know' (Fiske, 1989, 7). The most useful way of categorising these for me is to recognise that the 'melodramatic imagination' (Landy, 1989, 189) is energetically at work here. In some way, the 'novelised' death bed scenes in journalist Randy Shilts' famous (or notorious) And The Band Played On: Politics, People, and the AIDS Epidemic lie behind Vinnie's passing and others (Shilts 1987). I will deal with Shilts below.




Other examples of the celebratory death: 'It's in the Water' (1997) and 'Jeffrey' (1995)

Here are a couple of other examples in gay-positive films of what has been filtered through the 'melodramatic imagination'. Bruce dies in the AIDS hospice (Hope House) in the bitter-sweet comedy, 'It's in the Water' (film, USA 1997), and his private room has been opulently refurbished from his home. Grace, the attractive caring nurse, entrusts her wedding ring into his hand as a sign of her leaving of her own heterosexuality and a signal to us, as viewers, of our last farewell to him. He is sleeping. Bruce's funeral is the finale of the film and stars a Gospel choir, yet his coffin never comes into frame for us. This is emphatically resurrectionist and in keeping with the zany-satirical comedy of the film. The publicity tells us: 'there's something in the water that turns people queer' in the white Texan paradise of Azalea Springs.

'Jeffrey' (film, USA 1995) has become perhaps the most popularly successful HIV/AIDS comedy, an adaptation of Paul Rudnik's hit stage play and typical of the second generation of 'AIDS cultures'. Olson, however, describes it as 'a good old-fashioned AIDS-era gay romantic comedy' (Olson, 1996, 'Jeffrey'). We learn of the passing of young Darius in the hospital waiting room scene:

Sterling (Darius's older partner played by Patrick Stewart): He doesn't recognise anyone.
Jeffrey: Well, You never know.
Sterling: No he doesn't. He's dead.
Jeffrey: What?
Sterling: Half an hour ago. (pause) It's the first time that I've said it. Out loud. A brain haemorrhage. That's why it was so fast. These brain things. That's why three weeks ago he was marching on Fifth Avenue [in Gay Pride]. (pause) With me.
Jeffrey: I'm so sorry.
Sterling: You're what? You're sorry. Oh thank you, Jeffrey, thank you. Darius is dead. And I'm sorry too.

Darius later reappears as a fantasy angel, in one of the film's musical numbers. The elision of the deathbed is typical of popular 1990s AIDS films.



'A Place for Annie' (1993)

In the closing of 'A Place for Annie' (film, USA 1993), another in the heterosexual category and regularly rebroadcast on TV, we have a symbolic though rather unlikely 'death' closure. The PWA drug-using young mother leaves for the hospice and grants parental rights to the kindly paediatrics doctor heroine, played by Sissy Spacek. 'Wave goodbye to your mother' is the last line of the film. So we have here a neat death, played out symbolically, in which the musical underscoring and slow camera panning do most of the work. The mother has even managed to pack her bags, call herself a taxi to the hospice and make it out the door unassisted. It does not take much culturalist analysis to see that although this film raises issues of sympathy for those infected - a quote: 'You can't catch AIDS from a baby's tears' - 'A Place for Annie' rapidly succumbs to a conservative position.




Randy Shilts, And the Band Played On ('novelised' reportage book, 1987 and film, USA, 1993)

I have nearly reached the end of my examples from AIDS melodramas and I must now refer to the startling deathbed descriptions in Shilts' 'novelised' and journalistic history And the Band Played On. There are a number such in the book, although the subsequent star-studded film (USA 1993) omits them, albeit including a number of hospital scenes and corpses. The death I discuss here is that of Gary Walsh in February 1984, an ex-Catholic and a gay psychotherapist who had been working in San Francisco. Gary's deathbed becomes a 'holy shrine' to 'pilgrim' visitors and he says, among other deathbed insights, 'I am love and light, and I transform people by just being who I am' (Shilts, 1987, 425). Also:

"Dying consciously and naturally is very hard, harder than I thought, the hardest thing I've ever done," he said. "Death is right around the corner. I know it is. I couldn't do it without the two of you [friends Matt and Lu]. I'd give up. The things they say about death, they sound trite. But they're all true. I see the stairs."

(Presumably he sees the stairway to Heaven.) His last reported words were 'I want to leave' and 'I want to go' (ib.). As Gary was the '164th San Franciscan to die in the epidemic' (427), his aware-dying, and transformationist and resurrective death are an interesting early 'script'. There are hints of Christ's Last Words - visionary, with a temporary existentialist sense of desertion, then leading to Heaven (Christ's 'My God, my God, why hast Thou deserted me' and 'Into Thy hands I commend my spirit'.) But I must refer to notorious controversy here. James Miller, among others, launched a stinging attack on Shilts. Here he is on the Gary Walsh death:

With an unapologetic burst of Dickensian sentimentality, Shilts has effectively rewritten the death of Little Nell as the death of Little Nellie.
(Miller, 1992c, 260)

Miller devotes some pages to Shilts' moralising 'tableaux mourants':

I suspect that Shilts is making lots and lots of money out of his succès de scandale by feeding his straight and some of his gay readers exactly what they want: large dollops of guilt.
(Miller, 1992c, 264).

(See also Crimp 1988b.) The film, 'And the Band Played On' (USA 1993), ends, just before a montage of Quilt panels and photographs of those who have passed on, with the heroic gay campaigner and main character Bill Kraus (Ian McKellen) near his end and saying Socrates-like: 'I used to be afraid of dying. I'm not any more. I'm more afraid of what happens to the people who live'. This is the climax of the plot of a long and grim film. Interestingly, in the book, and with cryptococcal meningitis and weighing 120 pounds, when asked if he was afraid of dying, Kraus answers, 'I'm more afraid of what happens if I live' (Shilts, 1987, 604).





The melodramatic imagination at work

Rounding off on these triumph-over-tragedy examples, and before I look at some contrasting and serious pieces, we can appreciate the 'melodramatic imagination' at work here. The death scenes (or their equivalent stand-ins) are what are acceptably representable. They are exemplary instances where the audiences are given the reward of final moral satisfaction - they can judge and 'punish' AIDS, the virus and PWAs, just as audiences in the past had done to other villains and heroes. How is the popular text 'supposed to know' about the AIDS death? One can deconstruct positive and negative images of HIV/AIDS, for, as Simon Watney puts it in his survey of 1980s health campaigns and the media:

… homosexuality, understood by AIDS commentary as the "cause" of AIDS, is always available as a coercive and menacing category to entrench the institutions of family life and to prop up the profoundly unstable identities these institutions generate.
(Watney, 1988, 75)


(See also Watney, 1992, 333-4 and the emphasis in activist-aesthetic analyses on discrimination against all PWAs, across ethnic and gender boundaries.) But crucially, these deaths, which have been filtered through the 'melodramatic imagination' can be deeply affective. I think this point needs emphasis here and is part of the reason for my coverage of these. Thomas Waugh, in his discussion of gay TV AIDS melodramas, confesses he remembers that even over something as contentious as the pioneering 'An Early Frost' (TV, USA), 'many of us secretly wept copious tears'. This was in spite of its later 'blanket dismissal' by scholars in a Yale 1988 conference (Waugh, 1992, 123).

These pieces afford hagiographic narratives, related of course to their genres and now to their TV slots, as they are rebroadcast. They are transformative deaths, typically resurrectionist and with angels or suchlike symbols as a substitute for hieratic power.

Above all and as opposed to nineteenth-century literature, they focus on reorienting their audiences as survivors towards living. (Shilts is the exception.) As films and plays, they swiftly efface the details of the death bed, and move on the viewers to the grieving role, a 'resurrective practice' (Seale, 1998, 50). Seale explains further, in relation to the anthropology of death rituals:

At the psychological level, however, the construction of a meaningful approach to social life is rooted in a 'denial', or at least a turning away from the problem of death. Attempts to transform death into hope, life and fertility are seen in a variety of practices which combine to 'kill' death and resurrect optimism about continuation in life in spite of loss and certain knowledge of one's own future death.

The mourning process is spurred on and completed successfully when 'the wound death inflicted on a lover's narcissism is healed' (Bronfen, 1992, 327). This orientation is key to the usual presentation of deaths in TV soaps. For example, in the UK ITV soap 'Coronation Street', where an episode featuring a death scene, or the news of a death, usually combines with a parallel plot which is strongly farcical.

In the gay examples above, and in 'Longtime Companion' (film, USA, 1990) to be discussed below, para-families of partners, volunteer carers and friends immediately transform into a community of mourners, but in a positive relationship built on repeated experience in the AIDS pandemic. They obviously contrast with what is suggested to be out there in 'Heterosoc' (Derek Jarman's term) - anonymous counselling or a silent grief.

It is noticeable that the surviving wife, Roxy, in 'And Then There Was One' (film, USA, 1994) is left alone at the end and early on, when given her HIV diagnosis and on being offered counselling, she had replied (admittedly upset), 'I don't want to share this nightmare with a bunch of sick strangers'. These heterosexual AIDS films are all resolutely in the American tradition of self-help enterprise and self-serving individualism, and their protagonists have full health insurance. Further, as the husband and wife, Roxy and Vinnie, progress into their 'nightmare' of regrets and inevitability, they cease the love-making that featured in the early pre-diagnosis scenes, when they finally achieved a successful conception. This is in contrast to love-making in the majority of gay AIDS films, re-affirming the rights of PWAs to their desires and which becomes, says Waugh, a 'sacramental charge … signifying the force of renewal, healing, and comfort' (Waugh, 1992, 125). Note 5 (I mentioned the erotics of death in my introduction.)

One of the ideological issues here is whether any director appears to market the AIDS brand to the dominant culture as yet another pathology. (On the UK satellite/digital channel, 'Living', there is a regular mid-evening slot featuring the battling woman - through alcoholism, surviving cancer, rape, the abusive husband, etc., and AIDS.) Bart Beaty explains that mainstream American filmmaking has 'long ago lost its political nerve' and now tends to address AIDS and all socio-political issues 'as part of a purely personal spectrum of significance', retreating 'from political confrontation towards personal "growth" and "enlightenment"' (Beaty, 1992, 112). See also Watney, 1992, 335 on 'sadness' and loneliness in the personality stories of the HIV+ in the mainstream American press, erasing mention of support structures. But on the positive side, and back to the defence of the gay male AIDS melodramas that I mentioned above, Waugh claims that for 1984-6 on American television:

… melodrama was the principal vehicle in independent gay male fiction in film and video (and theatre as well …) for our dealing culturally with the trauma, fear, bereavement, and sacrifice that AIDS has occasioned in our community.
(Waugh, 1992, 122) Note 6

The most important point is that these pieces played images of the AIDS death bed to popular constituencies and that in some few of them, they are focused on the heterosexual point of view, whatever the problematic this raises.





Dying as adventure

This melodrama category - and here we are back to Gill in 'EastEnders' ('It's been great fun, hasn't it?') - remains within what Seale terms the 'revivalist discourse', in his discussion of the hospice movement and its critique of late modernist dying. I have referred to this 'aware-dying' (Seale 8) and prophetic role already:

Here, people with terminal disease have the opportunity to construct themselves as inner adventurers, transforming the experience of dying into an opportunity for personal growth and an affirmation of caring bonds.
(Seale 7)

There are 'dangerous' gay examples, however. Michel Foucault, the French intellectual who died of AIDS in 1984, was 'strangely open about his own fascination with death' (Dollimore, 1998, 305). Dollimore quotes a near-death experience of his and it chimes somewhat with this revivalism:

Once, when high on opium, he was hit by a car. As he lay in the street, for a few seconds, 'I had the impression that I was dying and it was really a very, very intense pleasure . .. It was, it still is now, one of my best memories'.
Note 7





Social death and biological death

Here is another important principle about the representation of the deathbed in AIDS melodramas. Dying becomes the exemplary 'social death' (Seale, 1998, 34) and it is dramatically brought to coincide with biological death, the cessation of breathing and movement. 'EastEnders' Gill, for example, dies 'over fifteen seconds or so'. Take the opposite case. In the Alzheimer's Disease patient, the human social bond becomes all but broken, and biological death occurs perhaps years after social death. Note 8





Powerful emotional and intellectual responses

The rest of the article deals with the ontological conditions of the AIDS death, among other issues. The end-of-life, as stated by Dollimore, can be devastating, perhaps inexplicable, and a trauma for witnesses. It is perhaps unendurable for the viewers of the film 'Silverlake Life' (below). Death is linked to what Janet Stacey calls its 'teratologies: the tales of monsters and marvels' (Stacey, 1997, 10), and she links this with HIV/AIDS (42-4, 68-9). I move now to two further films ('Longtime Companion' and 'Silverlake Life') and autobiography (Dreuilhe, Brodkey). My coverage of these is brief.





'Longtime Companion' (film, USA 1990): Letting go

'Longtime Companion' is taken to be the first main pioneering American feature film after 'Buddies' of 1985 (USA), and it is set in New York in the nine years, 1982-1989. Olson quotes Vito Russo in The Advocate: 'It is the first major movie to deal with gay men and AIDS; it doesn't try to explain gay life to a mainstream audience; and it contains more affection and intimacy between men than virtually any other film in recent memory' (Olson, 1996, 'Longtime Companion').

The one death on screen is that of the writer Sean (Mark Lamos), nursed by his partner David (Bruce Davison). We have seen the disintegration of Sean, his mobility and neurological-cognitive problems (including urinating in a public park). There is a strand of documentary-like observation through the film, I find. In the final scene with Sean, we see his loving partner easing him through his death pains: 'It's OK you can go … Don't be afraid … You let go of everything … Let go of everything - all the worry, all the pain … There you go'. The film is honest and close to its participant-researchers listed in the credits such as the Gay Men's Health Crisis. We do not see the biological death of Sean. There is no telescoping, no 'cheating' and no melodramatic restructuring. The scene ends with David still maintaining his palliative care. We know it is almost the end. The 'letting go' and the 'You can go' permission are met often in carers' accounts of AIDS deaths (Newman 1995).





'Silverlake Life. The View From Here' (documentary, USA, 1993, 99 minutes): documentary biological death

My next excerpt differs shatteringly from the melodramas above and it is a video diary by gay partners, Tom Joslin and Mark Massi, which shows Tom's palliative care and death. It breaks the taboo that dying itself is not shown on television, though the actual moment of passing is not filmed. This documentary also allows audiences direct access to the views of those who are living and dying with AIDS, and Olsen comments that it involves 'the viewer in a spiral of pain, isolation, frustration and fatigue' (Olson, 1996, 'Silverlake Life').

Nichols, in his book on film documentary, discusses the difference between fictive death which can be experienced as visible and satisfying, and death in a film documentary, which is not. (Nichols analyses an experimental Canadian documentary coldly shot in a Pittsburgh morgue.) He quotes Sobchak who has just been discussing the 'slow motion ballet of death' in Sam Peckinpah's The Wild Bunch and who now turns to documentary:

We are made witness to something that cannot be seen literally (the exact moment of life's cessation) or metaphorically (for the most part, taboo disguises it) … [death] in documentary films is experienced as confounding representation, as exceeding visibility.
(Sobchack 1992 in Nichols, 1991, 80)

Nichols continues:

We witness what exceeds our sight and grasp. The camera gazes. It presents evidence destined to disturb. This evidence cries out for argument, some interpretive frame within which to comprehend it.

'Silverlake Life' makes dying and death visible, and the dialogue (including speeches to camera and surviving partner Mark's voice-over) work to let us in on the trauma it is 'supposed to know'. The result is painfully raw and yet fluently edited, and mesmerising for those who can endure the visibility of dying here. It is one of the most remarkable performance works of the AIDS Pandemic. Here are three succeeding scenes in this documentary.

As Tom is near death, we see him, lying just in his incontinence pants, severely wasted and marked by KS lesions, noticeably on his right eyelid and nose. The face is skull-like. The camera is angled down on Tom. Mark does not come into shot but is talking into the microphone of the video camera which he is operating.

Scene A
Mark: Today's June 25th and it's really really hot and Tom's lying in bed here all nice and cool. (To Tom) OK, tell the camera how you feel.
Tom: (mumbles)
Mark: He says he feels pretty bad.
Tom: (mumbling a little more distinctly) I don't feel chipper.
Mark: He doesn't feel chipper.
Tom: (mumbling)
Mark: He doesn't feel good.
Tom: … feel good.

Now comes the following scene. The camera is angled down on Tom, as before, and he has just died. Mark does not come into shot and is talking into the video microphone.

Scene B
Mark: (a raw cry of grief) Oh! This is the first of July. And Tommy's just died. My lovvie's just died. And I sang to him. (singing) 'You are my sunshine, my only sunshine, you make me happy, when skies are grey, you'll never know dear, how much I love you, please don't take my sunshine away'. Isn't he beautiful. He's so beautiful. This is for you darling. All of your friends will finish the tape for you, OK, we promise, we promise. Bye, bye Tom. (weeps)

And in the succeeding scene, the funeral director has come and is making arrangements, and Tom is about to be put into the body bag. Again the camera is angled on Tom, who has been laid out but is covered only over his loins.

Scene C
Funeral director: Any rings or jewellery or anything?
Mark: I think he lost that ring. I got his hands crossed. It fell off. (pause) I'm going to cover you up now Tom. There we are, there we go.

I will discuss these examples further under language, body and the visibility of AIDS. But in these scenes, the battlefield is the body, and beyond the cut between Scene A and B, there is no occluding of death. The camera, hand-held, stays on Tom. We are presented with the evidence, as Nichols says, 'destined to disturb'. The raw lament, which we hear as Scene B begins, is Mark's just after his partner has died, and it so powerful. We know he has taken up the camera as soon as he was able.

The moment of life's cessation may not 'literally' be seen, as Sobchack points out. But 'Silverlake Life' does all it can to present us with the 'unspeakable act' and to render it 'speakable' and visible - the riddle posed by my article title. There are some examples of documentary photographs, such as the Benetton advertisement of March 1992 and Robert Sawdon Smith of 1997, which put the process of dying into the picture and subject it to our gaze. They inevitably take a share from the dominant Western Christian iconography of the hieratic corpse (Christ in the Pietà pose, the Virgin Mary before her Assumption, saints in martyrdom). Note 9






Autobiography: Dreuilhe, Jarman, Brodkey

My last examples - Emmanuel Dreuilhe, Derek Jarman and Harold Brodkey - are taken from autobiographical works. Again, I only deal with short excerpts because of the focus of this article, unsatisfactory as this is within a large subject area. These extraordinarily poetic and intellectual works 'witness' to an end-of-life to come. We can sometimes see new cultural scripts being forged. Seale mentioned the role of the dying person as chief mourner and a glimpse of that is given at the end of Jarman's 'Blue', for example:

No one will remember our work.
Our life will pass like the traces of a cloud
And be scattered like
Mist that is chased by the
Rays of the sun.
For our time is the passing of a shadow
And our lives will run like
Sparks through the stubble.
Place a delphinium,
Blue, upon your grave.

But as opposed to the Camille model, we do not meet heroes purified by suffering. Each of these artists faces the end of their very faculties and power as artists. Derek Jarman's blindness, caused by CMV, was matched by him to the blue of the visual track. Each artist counters the 'death beyond all death' (the French historian Michelin's phrase, in Guthke, 1999, 256), the fate of having the memory of a person's life extinguished and eternally forgotten. The ending lines of 'Blue', just quoted, throw down that challenge to the audience. Each of these writers provides a confession. Note 10




Dreuilhe: the 'supreme flash of lightning'

Emmanuelle Dreuilhe offers a lonely, moving and imagistic diary in his Mortal Embrace. Living with AIDS. It was written in New York, originally in French, in 1987 (Dreuilhe 1988). Amidst many literary references, he keeps to his central conceit of his fighting the battle against AIDS as a soldier, with only a slight reference to Susan Sontag's famous Aids and its Metaphors (Sontag 1988). He had nursed his lover Olivier, who died after three months, and now he faces his own end:

I used to think that dying in one's sleep was a blessing, but now I would rather be in the highest state of awareness and intelligence when I experience that supreme flash of lightning.
(Dreuilhe, 1988, 57)

There is no hint here of a spirit escaping death, nothing resurrectionist. Rather death is imaged as a poetic celebration in the hope of preserving one's artistic faculties. The nearest model, though different ideologically, is Tolstoy's Ivan Ilyich. There, after a death agony, the protagonist accepts his dying, reverses his view of his life and ends peacefully with 'What joy!' (Tolstoy, 1960, 161). Nurses involved in palliative care of PWAs have told me how, in some cases, once death is no long resisted, the end can come suddenly and peacefully.




Harold Brodkey: This Wild Darkness (1993-5)

Short story writer and novelist, Harold Brodkey's This Wild Darkness. The Story of My Death is perhaps the longest meditation of all on the artist's end-of-life through AIDS (Brodkey 1996). It was written between spring 1993 (his sudden discovery of his HIV status and serious pneumonia) and late autumn 1995. He died in 1996. It is a merciless documentary of himself, and his relations with his doctor, wife Ellen, and previous gay lovers. This is combined with an extremely detailed delineation of his shades of emotion - Proustian but for its approachability.

Again, I can only refer to fragments. Brodkey comes to realise he is 'gestating his own death' (10). Repeatedly, death has 'soft jaws' (17) and soft lips. Death itself is 'soft, softly lit, vastly dark' (24). The approach to the end is this: 'The self becomes taut with metamorphosis, and seems to give off light and to have a not-quite-great-enough fearlessness toward that immensity of the end of individuality' (24), towards one's absorption. Death is also like a farcical Medusa head (49), it waits in the hall (49), the 'death-at-your-doorstep' (68). Death has a rhythm, it 'doesn't glimmer with meaning' as he expected (152), but is 'dirt closing over me' (158).

In the final section, he has images of 'wild darkness' (171), the 'pit' (172), but above all, 'this inability to have an identity in the face of death' (173). On this latter topic, he adds:

I don't believe I ever saw this written about in all the death scenes I have read or in all the descriptions of old age.

Brodkey's continuous meditation is overwhelming. He finally talks about enjoying one's death (176) and at the very last, a dream of being on a river raft and laughing, 'at first with nerves and then with genuine amazement' (177).





The last words

In all of the examples above, we see the aware-dying role. The vehicles for this are dialogue and the confessional death. The continuance of dialogue preserves what Seale calls 'an intact narrative of self-identity up to the point of death' (8). Only then is the social bond broken and it is absolutely coincident with sudden biological death. The exception in my examples is of course 'Silverlake Life', where Tom's last recorded words on the documentary film preceded his death by a week.

As Stacey points out, death seems to promise 'a moment of truth' (Stacey, 1997, 243), while Bronfen uses examples of death-bed story-telling to suggest that 'Death is the sanction for all that a story teller might relate. She or he borrows authority from death' (Bronfen, 1992, 80 and quoted by Stacey).

Walter Benjamin, in 'The Storyteller' essay mentioned above, comments that it is:

… characteristic that not only man's knowledge or wisdom, but above all his real life assumes transmissible form at the moment of his death … the unforgettable emerges in his gestures and expressions; it imparts to everything that concerned him that authority which even the poorest wretch in dying possesses for the living around him.
(Benjamin, 1977, 94)

Some PWA characters in AIDS fictions take up this shamanistic role as described by Benjamin. They now have access to the transcendent which had previously lain outside their comprehension. Take the listening-to-the-opera-CD scene in 'Philadelphia' (film, USA, 1993). Tom Hanks is the protagonist and he is plugged in to his home portable drip. He imparts to his uncomprehending defence lawyer his gay aesthetic of the suffering diva. In 'It's My Party' (film, USA, 1995) and 'Parting Glances' (film, USA, 1986), among others, there is nobility and a 'correct' consciousness which recognises but successfully negotiates what has been called the 'impossible morality' of AIDS. Brodkey above all, doubts he will keep his identity in the face of death but balances this with the future of his writing. The presence of the actor on stage or film, especially if we are viewing a star, inevitably preserves this identity for us. Only in documentary, perhaps, can we adequately (though painfully) gaze on the biological disintegration of the body and the face in the biological end-of-life.





The function of language

Dialogue in the death scene of the 'melodramatic imagination' ('EastEnders', 'And Then There Was One', etc.) is the last element that maintains subjectivity and identity, and the ability to interrogate the transcendent. At the very last, the almost immobile PWA is defined by language. This recurrent trope in performance, especially on stage, offers a metaphysical assertion - that our world is finally logocentric. At the last we are left with the something-that-can-be-spoken, an Aristotelian theory of representation, based on the idea that language represents thought, and hence the Lifeworld. And then we, the audience, can muse on the drama beyond, where language cannot intervene. Dollimore discusses Foucault's disturbing, anti-humanist idea that language is 'animated by death' and that 'we are spoken by death' and quotes him:

It is quite likely that the approach of death - its sovereign gesture, its prominence within human memory - hollows out in the present and in existence the void toward which and from which we speak ... Perhaps there exists in speech an essential affinity between death, endless striving, and the self-representation of language . ..
(Foucault, 1977, 53, 55 quoted in Dollimore, 1998, 308)

The affective strength of 'EastEnders' Gill, Camille and other dying heroes and heroines, is that the end-of-life is simplified and clarified for us in a particular reductionist model of consciousness, language and death.





The battlefield is the body

As Cindy Patton puts it, 'the battlefield was our bodies' (Patton, 1990, 126). In some of my examples, the AIDS journey is through the spaces of the body, which in 'AIDS Cultures' becomes extraordinarily visible and perhaps fetishised: skin, stigmata, movement, contact, abjectness. Lizbeth Goodman mentions, among the semiotics of AIDS in performance, 'lesions, bruises, the sign system of thin ness, also associated with (largely, but not exclusively, female) eating disorders' (Goodman, 1996, 216). As Home Bhabha says, not only are 'gay men consistently fetishized at the level of the body far beyond any actual biological materiality', but for the PWA, 'the signifier of skin and skin colour is the most visible of fetishes' (Bhaba, 1994, 78). The damaged and abject body cannot deny its difference and the AIDS identity is indelibly marked in the end-of-life.

HIV+ dancers/choreographers are particularly visible. Performance artists, partners Ron Athey and Mehmet Sander, have used body bags and funeral rites, imaging their own deaths ('I'm mortified with the idea of dying and in particular, an ugly AIDS death. Everyday the clock is ticking and I'm aware that I'm dying', ICA programme notes for 'Deliverance', 9 December 1995). In another example, the video Viva Eu! (Brazil 1989) followed the last great moments of Wilton Braga, a Brazilian artist and designer who died from AIDS:

In a quite daring scene, we see Braga dancing naked, his body scarred by KS lesions. The moment is moving, almost like a Ceremonie des Adieux.
(Nadeau, 1998, 89)

Kaposi's sarcoma seems to be especially visible. John Clum described how he responded to a young actor who wanted 'the makeup people paint some Kaposi's sarcoma (KS) lesions on his hands so that the audience could see his "condition"'. Clum pointed out that 'AIDS itself is invisible, unactable' and referred to 'Ian Charleson, dying of HIV related infections, [who] perilously played Hamlet at the National Theater' (Clum, 1992, 40). It is significant how in Kramer's 'The Normal Heart', Tony Kushner's 'Angels in America', 'Longtime Companion' (to an extent) and other pieces, AIDS-related illness symptoms are reduced, predominantly, to this one skin cancer. Another example of the telescoping process within mimesis or something further? Note 11 This frighteningly recalls Artaud:

In our present state of degeneration it is through the skin that metaphysics must be made to re-enter our minds.
(Artaud, 1958, 99)

Of course the distinction must be made between HIV+ (non-symptomatic and 'invisible' to society) and symptomatic illnesses, which may be, but often are not 'invisible'. The medical facts are given in Sims and Moss 1991, and 'patients with AIDS have a number of co-existing diagnoses' (49). This book deals with terminal AIDS care. Some twenty-one pathological diagnoses are listed there (50-62), and 'total body pain' is another (63). My own work as assistant to AIDS Positive Underground Theatre, under the playwright and director John Roman Baker while the company were sited in Brighton (and now in Amsterdam), dealt with physicalising the symptoms of AIDS through body, skin and movement for actors in workshops. Examples are: folliculitis (severe skin itching, Sims and Moss, 1991, 60), PML and suchlike neurological disorders particularly affecting the limbs and walking, and the uncertain and very distinctive placing down of the foot (Sims and Moss 56), sight problems, restlessness, stress and the side-effects of the powerful drugs that are prescribed.


Consciousness and fictionalising the end-of-life

So what of consciousness (that is, being aware, sensory and verbally able)? What plausible models of the mind 'in extremis' are offered by these excerpts? Obviously, there is not one doctrine of consciousness shared by scripters and artists. But the functioning of the mind is most often reduced to the verbocentric, based on language and interactive dialogue. Consciousness is about relational verbal behaviour. This is how the mind is able to process communication and so give the last words. Then that function suddenly ceases. Perhaps the nearest model that cognitive science offers (of a number, summary in Lormand 1996) is that of the 'mental organ' of higher-order consciousness (Chomsky, 1975, 11). The brain and consciousness are similar to other organs such as the liver or kidneys. Of course, I press this 'organ' model in a particular direction for my argument here. But just as the other body organs shut down, so does the brain. It possesses no other remarkable properties. Death is the end of a dynamic system, represented and simplified through the verbocentric. The body's motor system ceases. Finally before the last 'flash of lightning' (Dreuilhe) or metamorphosis (Brodkey), the mind is about language processing. Though these artists long for a last introspective sensory burst.

One must also consider the specificities of staging, filming, writing, etc. Realism closes down some other epistemic possibilities. Alternative cognitive processes of the mind cannot so be represented. It is only by magic realism, for example in the death of Roy Cohn in Kushner's 'Angels in America' ('Perestroika', Act IV Scene 9, Kushner, 1994, 73-6), that we have access to further layers of the mind.

Dreuilhe, Jarman and Brodkey take us into other mysterious intuitions and metaphors. The consciousness of the artist defies the laws of gravity, and is something over and above the fading physical process. Documentary ('Silverlake Life', photography) collects other evidence since we glimpse biological death and this helps to tie conscious experience to its physical basis. But whatever our gaze, we are still left with 'what exceeds our sight and grasp' (Nichols quoted above). Are we bio-tourists? What of the fetishisation of the male body in these scenes (linking gender, medicine and sexuality)?


I have attempted to look at how 'AIDS Cultures' account for the end-of-life through my rather narrow focus of some deathbed scenes. Anthropologists can continue to study the larger picture of how the Late Modern handles death. From the culturalist stance, we can glimpse the constructedness and relativity of contemporary representations, noting already the first and second generations of AIDS plays and films. Imaging and fixing the AIDs death can serve to counter the 'ever exilic, ever transitory place of death in modern urban life' (Vidler, 1998, 299).

There is evidence of repression and reduction in works filtered through the 'melodramatic imagination', which is not a surprise. But I hope I have shown how this operates, using Seale's models of cultural scripts. We are offered triumph-over-tragedy, the bountiful goodness of family and friends, the social death and a reorientation towards living. Artists such as Harold Brodkey, Derek Jarman and Emmanuel Dreuilhe have shown, over and beyond their own passing, a commitment to praxis and to aesthetics-activism. The more serious examples circle around the end-of-life experience and refuse the linear narrative with its one, restorative closure. Death, for them, is not the highest point on the upward-learning curve of life. The mind is more than another body 'organ' (Chomsky), but unmeaning and loss of identity are not excluded.

Such fictionalising and 'performing' of AIDS deaths must be part of resignifying death in 'new, complex and productive ways' (Dollimore, 1998, 126). As touched on above, Dollimore also stresses that we can only begin to understand the 'vital' role of death, 'when we accept death as profoundly, compellingly and irreducibly traumatic' (126). While for those more deeply caught up in the AIDS Pandemic, art offers moments of experiential overlap. Death cannot be Wittgenstein's non-'event'.



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Walton, 1990 regards works of art as props in games of make-believe enjoining 'imaginings in addition to those prescribed by the work' (2). Dilworth, 2005, 33 makes 'a distinction between epistemic versus broadly ontological or factual issues concerning a [fictional] work' See also Currie, Gregory, The Nature of Fiction, 1990, New York: Cambridge University Press, sec. 2.1; McCormick, Peter, 1988, Fictions, Philosophies, and the Problems of Poetics, Ithaca, NY: Cornell University Press, chap. 7; Pavel, Thomas G., 1986, Fictional Worlds, Cambridge, MA: Harvard University Press. I have discussed referentiality (the connection between the fiction work, and aspects of the Lifeworld to which it makes reference) in Beck, Alan, 2000, 'Cognitive mapping and radio drama', Consciousness and the Arts and Literature, Volume 1 Number 2, July 2000, (see 'Referentiality'), referring , via Ingarden, to how the fictional world becomes 'concretized' in the imagination, and becomes applied to the receiver's own existential situation. See Ingarden, Roman, 1973, The Literary Work of Art: An Investigation on the Borderlines of Ontology, Logic and Theory of Literature, trans. Grabowicz, George, Evanston, IL.

Note 2

There are now many accounts of near-death experiences or NDEs, when a person nearly dies. See Mims, 1998, 349-50, who points out that these have 'basic features in common' and the 'shared core is extraordinary'. They emphasise peace and love, the dark tunnel and entering the light. The Internet has made these more popularly available and influential.


Note 3
See Keizer 1996 passim on deathbed scenes and Stacey, 1997, 1-17 on cancer hero/survivor and dying/celebration books and autobiographies. Newman 1995 offers a valuable spread of AIDS carers' narratives and so some material for popular culture analysis. Dollimore, already mentioned, in his Death, Desire and Loss in Western Culture gives an outstanding account across philosophy and literature, including Freud, Schopenhauer, D.H. Lawrence and Thomas Mann (Dollimore 1998). See also Whaley 1981, Ariès 1974, and on gender aspects, Bronfen 1992 and Guthke 1999. Smith, 1999, 13-4 comments on the death sounds of 'O, o, o, o' of Shakespeare's Hamlet and Othello, and the 'semantic emptiness of these O's on the printed page'.

Some other images of death popularly known - among many - include the death of Princess Diana (1997), the musical and film 'Evita', and Cronenberg's film 'Crash' (Cronenberg 1996). Brodkey, 1996, 32, imaging his own death, remembers characters 'who die in the books I most admire (I can't bear death scenes in movies) - Prince Andrei and Hadji Murad and Proust's narrator's grandmother'. There has been interesting work comparing HIV/AIDS with horror films and with images of other deaths and plagues. Gilman, 1988, 86-107, in her chapter, 'AIDS and syphilis: The Iconography of Disease', traces a 'background to the iconographic history of … images of PWAs' from woodcut illustrations dated 1496 and on into the nineteenth century examples. She claims that 'the powerful iconography of the sexually transmitted disease haunts our understanding of AIDS' (107).



Note 4

On this topic of death-denying and society, see Dollimore, 1998, 119-27 on 'The Denial of Death?', traced by some he cites back to the eighteenth-century Enlightenment, and on to Baudrillard, 1993. See Bauman, 1992, 133-7 on death and modernity, Keizer, 1996, Field and Cassell, 1997, 44-6, Mims, 1998, 317-20, and also Bronfen 1992 and Walter 1992.


Note 5

Roxy, for all her will power, has taken the path of quietism and alienation away from other HIV+ people. Though not said directly, there is only one apparent direction for the audience to go - to blame those responsible for the sufferings of herself, her husband and the baby.


Note 6

By contrast, here is Beaty on the lack of activist political commitment in 'Longtime Companion' (1990):

The good gays prefer to fight the Syndrome on an individual basis, case by case, tragedy by tragedy. The Syndrome is never identified with the System that constructs and perpetuates it … Once again the peculiarly American notion that only the individual (not the group) can effect a change for the better is reinforced.
(Beaty, 1992, 118)

Goodman warns that AIDS performance work is still being marginalised in Britain and that:

In 1994, after the American import to Britain of major stage events such as Angels in America, live arts work about AIDS is much more acceptable; that is, the images and ideas expressed are in danger of being homogenised, sanitised to please a mainstream audience.
(Goodman, 1996, 204)

I think that 'AIDS Cultures' have got to be analysed across all the media, and that when one takes film, dance, photography and the novel into consideration, there is even more challenging work in circulation.



Note 7

See Dollimore further on the 'suicidal and the murderous', and Foucault as compared with Oscar Moore's 1991 novel, A Matter of Life and Death (Dollimore, 1998, ix-xii).



Note 8

A medical description of the biological deaths of PWAs is to be found in Terminal Care for AIDS Patients (Sims and Moss 1991). General details of the process of death are given by Mims, 1998, 111-121 and Field and Cassal, 1997, 42-4, and throughout the extraordinary Dancing with Mr D. The author of this latter is a Dutch doctor in a nursing home, and he gives case history after case history, including AIDS (Keizer 1996). Curiously, Seale, in his Constructing Death, does not include a section specifically on the deathbed. Medical discussions stress the difficulty of defining the moment of death and legal aspects.



Note 9

In March 1992, the Italian fashion retailer Benetton booked space in magazines for the photograph of a dying PWA. In fact, this was taken just after the passing of 32-year old American, David Kirby from Stafford, Ohio. He was Christ-like, a Renaissance icon, in the arms of his father and with his mother and sister alongside, bearded, and with obvious body wasting, and his eyes open and his mouth slack. Although touched up, the image confirms this as documentary reportage. The controversy was widely reported (The Guardian, 24 January 1992, 22), some HIV/AIDS groups protested and there was a boycott called for 15 February 1992. Some HIV+ people acclaimed it as breaking silence, along with the Benetton billboard of a positive person with a tattooed number. In another instance, Robert Sawdon Smith took photos of PWA Simon Kennett right up to, but not including, his death in London hospital (February-July 1997). 'The Times' refused to publish one of them which won a competition ('The Times' 27 September 1997).



Note 10

Bordowitz, 1994, 25 prefers the term 'testimony' for his autobiography of living with HIV/AIDS, because 'confession is the story of a sinner'. Obviously, confession has a long literary history.


Note 11

This certainly relates to the earliest pathology of AIDS in the 1980s, when incidences of Kaposi's sarcoma (KS) were proportionately greater (48% in 1981, 20% in 1987, and 12% today in the USA gay HIV+ community). Before-and-after pictures of Rock Hudson in 1985 showed him gaunt and with KS, so the 'closet war exploded into the popular imagination' (Patton, 1990, 127). KS is now known to be not a cancer, but due to the Human Herpes Virus 8 (HHV8) and treatment means that it is not life-threatening, usually. KS can arrive suddenly without other accompanying symptoms, and of course, it marks the body with dark stigmata.




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