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of European Cultures
Abstract
This article attempts to blur the lines between ethnography, art and performan-
ce in the pursuit of memories about illness and death in contemporary London.
Included is an excerpt from a staged fieldwork performance: Everyday Adven-
tures in London whereby volunteer "buddies" of persons who had died from
HIV/AIDS in the 1980s and 1990s were asked to walk round the city narra-
ting episodes and events into a tape recorder while another volunteer interjected
and took photographs. A central problem within anthropology considering the
centrality of memory, imagination and reverie to everyday life, is how to bring
events from the past into life given that there is no independent access to cons-
ciousness. Accordingly these performances attempt to facilitate different kinds
of dialogue between informants and their surroundings through the dramatisa-
tion and textualisation of their being; whereby the significant experiences are
brought to life in situ against the background of the city itself.
Keywords: Performance, memory, disease, death, HIV/AIDS
10
spread far and wide above the city. Even people distanced from high-ris
groups made adjustments to their behaviours and lifestyle and adopted
safe-sex practices following extensive media coverage, political debate
and public health campaigns. Thus not for the first time disease cast
shadow over life in London1, compounded by the intimate constellation
HIV/AIDS formed with a seemingly certain death.
Of enormous significance is the fact that this era predated the arrival
of triple combination anti-retroviral medications that subsequently tran
formed the experience of HIV/AIDS in western countries. These medi-
cations not only mediate the threat of death by reducing the viral load
and boosting the immune system but in many cases offer the person
greatly increased life span. In the west, anti-retrovirals have transforme
HIV/AIDS from an acute into a chronic disease and triggered a massiv
shift in consciousness, body and emotion whereby people who had be-
en preparing for death found themselves learning to "live" again. Many
persons are now living in a future that they never thought they would
see, have resumed careers and are experiencing the world through he-
althy and stabilised bodies. Unfortunately, however, for all the persons
living with HIV/AIDS in this article the arrival of anti-retroviral medi
cations came too late and they are all long since dead. This means if w
are to tell their story and recall the pre anti-retroviral social landscape
of the mid 1980s and 90s when HIV/AIDS was equated with a certain
death, we must turn to the others that were part of their polythetic social
network. This shifts the focus away from the consciousness of indivi
dual persons confronting their mortality towards a relational model tha
focuses upon the traces left by the person through their social interact
ons with friends, colleagues, family-members and medical professional
People close to the patient would frequently witness traumatic life even
and experiences that would often lead to radical changes in their own li
and worldview, and now many years after the patient's death, odd phrases
and lingering memories continue to persist and hang around building
Likewise ideas and emotions resurface when making life decisions or
as often simply emerge into consciousness unbidden. The staged field-
work performances presented in this article therefore have the potenti
not just to uncover memories about the life, decline and death of peo
ple living with HIV/AIDS in the pre anti-retroviral era but also capture
11
the experiences of those close persons who helped their friends, famil
colleagues, patients and clients live with and die from HIV/AIDS.
The particular focus of this article concerns the volunteer "buddies
who visited, befriended and provided emotional and practical support
for persons living with AIDS during this time. The 'buddy' service w
provided by The Terrence Higgins Trust, a charity born out of a politi
will whereby disillusioned friends of Terrence Higgins (the first perso
in the UK to be diagnosed with HIV/AIDS) founded an organisation in
1984 in his memory that unlike mainstream services would be responsi
to people living with HIV/AIDS. The buddy service was open to anyon
whose HIV+ status had developed into AIDS and who requested to
paired up with a volunteer buddy. The volunteer would then visit th
person every week and would provide emotional and practical suppor
for as long as the person was alive and many still continue to be in contact
with the person's family and friends.
Volunteers were divided into geographical boroughs of London
Each area contained a number of "buddy support-groups" consisting
up to 50 buddies and smaller sub-groups who met once a month. Man
close friendships were formed between buddies and the sharing of exp
riences was not just confined to support groups but extended into oth
areas of social life. The group I worked with mostly consisted of gay
men between 25 and 40 and a smaller proportion of women. Many vo
unteers saw buddying as a long-term commitment and therefore over t
years had accompanied more than one person as they approached dea
Although the buddy service changed its focus after anti-retrovirals h
transformed the experience of HIV/AIDS, the traces and impact of th
era of radical uncertainty remain not only in the embodied memories a
responses of the volunteers but also in terms of the decisions they ma
de at the time - including lifestyle changes, transformations in belief
even different career choices - which now combine to define the perso
present life as well as their possibilities for the future.
12
"The ethnographer must be able to catch memory 'at work' and he must docu-
ment this by means of 'texts'. Ordinarily, the ethnographer does not find such
texts; they must be made by means of recording communicative-performative
events that become protocols when they are transcribed and translated. Thus,
work - hard work - is required before memory work can be presented and in-
terpreted" (Fabian 2003: 492 italics in original).
"Not only could memories have critical effects : what I found was that in re-
membering in the sense of producing memory that could be narrated, exhibited,
performed, in short, shared, required critical work. Such work had to be car-
ried out in a field of tensions between positing and negating" (Fabian 2003: 490
italics in original).
2 Particularly as explored in Fabian 2003, Antze and Lambek 1996; Feld and Basso
1996; De Certeau 1984.
13
14
Isabel Collins was a middle aged woman who was the first woman i
the UK to be diagnosed with AIDS. She became infected through a blood
transfusion in the early 1980s and although she was often public abou
her status she always refused to say how she contracted HIV/AIDS whe
people asked her. This was not to mask the truth but to collapse the dis
tinction between "innocent" and "guilty" modes of HIV transmission.
The photograph is the spot where in 1987 Isabel Collins was robbed an
beaten-up by a gang of youths whilst she was walking home along Edit
Grove in Chelsea one night. As Isabel lay bleeding on the pavement som
passers-by saw her and came over to help. As she lay there looking up
at them she decided she had to tell them to keep their distance becaus
she had AIDS and it could be dangerous for them to come into contact
with her blood. Her body covered up a greater depth that is not readily
present to vision. Underneath Isabel's skin lurked a virus, which mean
that blood, a substance that gives life, was also a poison that was killing
her and also had the potential to kill others if it left her body. And it
15
important to realise that what troubled Isabel much more than the
al violence was being forced to reveal her condition to people who
come to help her.
This bus stop is the place where the volunteer saw Isabel Collins aliv
the very last time . Often words and gestures possess little significa
their own time and place and they are only retrospectively inscribed
meaning . Throughout history small words and tiny gestures are
resonant and meaningful by a later event, and a forgotten smile f
wave or trivial comment subsequently becomes infused with intense
tions say in the knowledge that this was the last time a friend or f
member was seen alive. This reminds us that meaning is never com
tely wrapped within its present context but remains unfinished and
to later re-signification. But what is distinctive with regard to HIV/
and other terminal conditions , is that events are already and routi
ascribed with their potential future significance. Saying " see you la
16
is not the same casual act of ordinary everyday speech but an unreso
statement or question , that can be seen in people's eyes , heard in th
voices and felt in handshakes which are all too often interpreted as
invitation to collude with a particular vision of the future where life
on. Both Isabel and the volunteer knew this was likely to be the last
they were going to see each other as the volunteer was leaving for a
abroad . Fifteen years later whenever the volunteer walks past the
stop arresting memories of things that were unsaid at the time eme
alongside the hurt of saying goodbye in a public place and the shar
unspoken and morbid knowledge offinitude. This was it, a goodbye t
recalled Schopenhauer's suggestion that "every parting gives a foreta
of death".
Perhaps the need for interpretation in the face of things unsaid is most
marked during the extended periods of silence that are frequently cha-
racteristic of sustained illness . Almost the entire relationship between
the volunteer and Dave Billinge took place in his bedroom in silence .
For six entire months Dave would lay motionless , with a duvet pulled
17
over his head and nearly all attempts at conversation by Dave's fam
or the volunteer were met with silence. Early on Dave said he didn't
to talk and from then on , apart from saying hello and goodbye , vir
ly no verbal communication took place and so every Sunday aftern
and Wednesday evening for six months the volunteer would sit by
ve's bed as he lay under the duvet . Dave requested to have a buddy
could have stopped the relationship anytime but it continued right
his death , so we can only assume he found it beneficial to dwell in silen
with someone by his side. The volunteer remembered finding the sil
extremely uncomfortable to begin with but later learnt the import
of just being with someone and sharing the present. People are alw
thinking and speaking beings but there are times and places wher
person ceases trying to articulate their experience in the search for
derstanding and other times where they actively try to close down
consciousness whilst in the midst of pain and illness. For people w
are already existing somewhere near the extremes of speaking and
derstanding, silence is sometimes the only way to dwell when near
limits. By being alongside Dave the volunteer discerned "a simpler,
immediate sense of time" based upon long periods of silence that in
ved a heightened process of identification and a willingness for a pe
to be identified with another in a certain way that did not revolve ar
language . The volunteer would sometimes drift off into reverie a
other times began to gently massage Dave's legs and arms in a grad
recognition that uthe body ; not words , is the place where experien
HIV/AIDS are frequently played out".
18
The potency of the HIV virus usually surfaces through much less drama
tic events and experiences than the above example of the robbery. Thes
are the little everyday interruptions that catch people off-guard, inv
te reflections on time and mortality and restate the circumstances tha
brought two people together who would never have met were it not fo
HIV. Things often emerged during seemingly trivial activities such as
gardening or shopping. Gardening is an activity that makes time visibl
through the seasons, is orientated toward the future and offers easy ass
ciations with birth and death. Thus perhaps it was inevitable that thing
would emerge when buddies worked together in the garden. Poetical-
ly, pathetically, heroically Ben Sands meticulously planned and worke
toward a garden in his imagination aware that he would never see the
flowers he was planting come into bloom. And when Ben's deteriorating
health made it clear he only had weeks to live and found he couldn't g
outside let alone lift a spade, Ben spent £3000 on a massive sofa to lie
on as he entered his final weeks. What the buddy thinks about now whe
remembering Ben stretched out on the massive sofa is not so much the
disproportionate expense for such little time, but the badly matched sty
19
le and colour of the sofa . ' He deliberately bought the most imprac
light beige colour available , the sort that looks good to begin with
doesn't hide dirt and so soon looks filthy, declaring " it doesn't worr
that the colour isn't practical . . . it won't be my problem in 3 mon
Unfortunately Ben didn't even last that long and lying on the sofa
ked out costing almost £75 a day. In his will he left his gardening t
to someone without a garden and the huge sofa to a friend who li
in a tiny apartment, a persistent reminder of how comedy and trag
invariably meet in absurdity.
Alex Fraser, although very ill, wanted to watch a porn film and as
his friend to bring one round to his flat in Gay Street, Battersea.
' these are so obviously a set of elderly persons flats and Alex was
outrageous gay man living at No.l Gay Street' was already coincide
enough but this barely touched upon the strange contingency that
to follow. Among the films that were brought round was one shot i
Francisco in the early 1980s and so documented a pre-AIDS era of
20
sexual freedom far removed from the era of disease and anxiety fr
which it was viewed 10 years later. As Alex began to watch the film
found himself gazing at his own past as the movie was filmed at a la
night bathhouse session he himself had taken part in when he was liv
in San Francisco. As he watched the movie , complex emotions and su
ject/object relations emerged as Alex saw himself 10 years earlier as
athletic , tanned, healthy and handsome young man in the prime of
life. A man whose life stretched out in front of him and for whom
future offered many different possibilities other than the one he en
up living. The handsome , vibrant figure on the screen formed a rad
contrast with the person doing the viewing. Gaunt and unsteadyf A
was often stared at when he and the volunteer walked around Batter
But back then in the time of the movie Alex was reminded of who he
been: a person with a different body, frame of mind and outlook on
future who got stared at for his good looks and physique. A radical d
crepancy between the life someone imagined they were going to live
the one they ended up with.
21
22
whiff of illness not only resulted in the guy running away but mar
Alex* s transition from a popular and desirable man to the beginning
him becoming a kind of pariah.
Mark Page was born in 1964 and so was 30 years old when he was livi
in this house by the River Thames . Mark's 30 years seemed old to the vo
unteer who was 24 but now the volunteer is himself 34, he looks bac
Mark and he seems so young. Far too young to have died. He wa
artist and the interior of the house was full of colours and his painti
To get to Mark's house the volunteer had to take the train to Barne
Bridge station, which winds through parks and fields and some of
most greenest parts of London, and as the season was summer whene
the volunteer visited Mark he looked out of the carriage and saw lo
grass, trees covered in leaves and thick foliage. Subsequently a cert
quality of light or encountering a similar type of landscape reminds
volunteer of the passage of time, of Mark's life and of his death. Mem
continually "opens-up" the present, but does not have to be attache
23
Illnesses , like cities , have nodal points and sometimes these combi
The Chelsea and Westminster Hospital is a place around which expe
ences and memories of illness inevitably gather. Almost every volun
24
25
26
to its texts precisely because "our analysis presupposes a corpse " (Tur-
ner 1982:89). Although different writing strategies have recently been
employed to open up the text, Turner himself advocates the use of per-
formance and drama as a way towards a more open anthropology. Her
in the footsteps of Turner this article uses the performative journeys th
informants make around the city to create the possibility of placing an
thropology in the subjunctive rather than closed mode and avoid the slow
murder of structure and context.
The process of creating the field and its past through performance,
photography and narrative involved the volunteers in thousands of deci
sions about what events to represent and what stories to tell, choices tha
expose the contingency and indeterminacy of the field and memory. Pho
tography is therefore an ideal medium as each and every photograph is
an act that involves a collusion with the contingency of the world, inso-
far as something is selected out of the 'vast disorder of objects' and wha
is documented only ever occurs once (Barthes 2000). Indeed "of all the
objects in the world" - asks Barthes in Camera Lucida - "why choo
se (why photograph) this object, this moment, rather than some other?
(Barthes 2000:6 brackets in original). Accordingly the volunteers' ac-
tions, photographs and tape-recorded narratives do not merely create
subjunctive field site for themselves, the anthropologist and reader but
by opening up a catalogue of questions for the academic audience they
also suggest a range of possible directions that accompanying theory an
analysis might follow. Memory is produced in the process. In the first in-
stance memory is produced as the volunteers make their way round the
city and different events and episodes are drawn out of the city's street
and buildings and turned into public documents. Slowly a sense of how
HIV/AIDS was located in relation to the pre-antiretroviral era emerges,
woven out of the idiosyncratic but overlapping memories of the volun-
teers. However in the act of rendering their memories public for the rea
der and anthropologist a secondary memory is produced whereby the
volunteers' narratives and memories "fill in" what is not immediately
visible to the reader and anthropologist. A tangible, although necessa-
rily fragmentary, sense of the city's pre-antiretroviral past emerges an
at times is perhaps even re-cognised in the gaps between the volunteers
words and photographs. This opens up the city for the audience, rather
than fixes it through explanation, and invites us to recreate the city fo
ourselves. For myself I now want to use the field of memory the volun-
teers created to take another look at the city I live in.
27
"The city as we imagine it, the soft city of illusion, myth, aspiration, nightmare
is as real, maybe more real, than the hard city that one can locate on maps, i
statistics, in monographs on urban sociology and demography and architecture
(Raban 1998:4). "The city goes soft; it awaits the imprint of an identity. For
better or worse it invites you to remake it, to consolidate it into a shape you can
live in" (ibid: 3)
28
29
skin, the photograph still does not expose a greater truth, for no m
how deep we probe into matter all that is ever revealed to the eye ar
more surfaces, thereby recalling Paul Valery's suggestion that "noth
is deeper in man than his skin".4 We glimpse the inner surfaces of
bel's life through an event that still retains the power to disturb long af
she passed away in 1990. Her skin is no more. Likewise the traces of
blood left on the pavement have long since been washed away but no
memories, which are revisited whenever the volunteer, and now my
walk down Edith Grove.
30
or group simply moves out, the dead skin peels off and is eventual
sloughed away only to reveal a newer layer of memories of succeed
groups and generations. It is evocative of the difference between c
and pellis, between the living skin that breathes and renews itself and
dead, discarded skin that has become scoured, loosened or simply f
away from the body (see Connor 2004). Thus the passage of time op
up different parts of the city to new possibilities carried by each suc
ding generation. As we continue into a new century a new generatio
young people, who were not born or young children when HIV/AID
first emerged, are exposing themselves to the virus. Infection rates
increasing and there are now more new infections per year than ever
fore, however the character of this group and therefore the characte
the memories currently being laid down, is no longer predominantly
men but increasingly heterosexual as well as Caribbean and African
It seems then that, like skin, the city too has a complexion whic
is made up from different hues and tones that change, weather and
tray the passing of years. Indeed the close link between complexion
complex, which both come from the latin con that denotes 'with' or
gether', and plectare which means to plait or twine (Connor 2004) s
gests how the city's complexion is the meeting point of many differ
stories and memories. And although in modern usage complexion ref
to the surfaces of the body, if we trace the term's etymology beyond
last few hundred years we see how complexion was also used to descr
the character, constitution and interiority of the body (Connor 2004)
reby displacing the distinction of internal and external, appearance
reality, surface and depth and suggesting that the city, like the bod
not so much a physical entity as a meeting place of people, materia
and the senses that mirrors the complex intertwining of flesh and w
advanced by Merleau-Ponty (1968).
The idea of the city, as a particular constellation of flesh and st
in which buildings, bodies and imagination mingle and intertwine is
a new one (Sennett 1994). Cities, buildings and houses have frequen
ly been understood by sociologists and anthropologists as extension
the corporeal body, with the various constituent parts correspondin
different parts of the body and performing corresponding function
such the walls of buildings and houses can be said to offer a second l
of protective skin (Connor 2004) that functions not only as a barrier
things such as society's gaze, public curiosity and nosy neighbours
31
I got to know Ben Sands quite well and because I lived locally his buddy
phoned me up one Sunday to say his death was imminent and could I
go round to witness his final will and funeral arrangements. Ben was of
course lying on his big sofa. He was not a religious man and as part
of his will he made special arrangements for the disposal of his body
that would not involve any religious ceremonies or representatives. Also
on Ben's mind that day was whether or not I'd taped Star-Trek, which I
32
had, but as he died later that week he never got to watch it. In the f
of mortality he did not want absolution from a vicar but was intere
in watching Star-Trek , a curious commentary on contemporary cult
and meaning in yesterday's world. Although Ben was reconciled to
impending death , on the day I signed the will he was desperately hol
on to life because he was only four days away from a substantial f
occupational pension which, along with the rest of his money, he wan
to leave to AIDS service organisations (I signed the will on Sunday,
died on Friday ; the day after he qualified for his pension).
Ben was also a big fan of black and white B-movies and had writ
ten in an old style "reading of the will " that adds to the drama of s
movies. The reading took place in Ben's living room where the execu
stood up in front of a huge fireplace behind which was a large orn
mirror. As the executor read the will to the assembly a sense of absu
dity was added ; the huge chesterfield sofa was left to someone wit
tiny apartment, his gardening equipment was left to someone who h
gardening, an ex-partner was left a particular painting that he alw
complained about rather than the one he loved and a friend was giv
a two-week holiday to San Francisco on the condition that his partn
(who Ben Sands detested) couldn't go, knowing that this would c
problems. And lastly as if to give the reading its authentic air ofB-m
melodrama he had cut his brother out of the latest will, and as some
ple already knew this, the drama was completed by the tension of not kn
wing how Ben's brother would react. Indeed, it is now quite common
choreograph one's departure from life ; and one volunteer remarked
most gay men's funerals are more like musicals. . . Judy Garland, Gl
Gaynor et al. For Ben, the pension, the sidelining of religion, Star-T
and the B-movie scenario seemed to be a way of involving himself
future in which the assembled gathering rehashed his funeral scrip
B&W, a scene he no doubt played over many times in his head. He l
me a pair of old boots, a lamp and a big pan for cooking pasta. . .
Ben's buddy was responsible for organising the practical arrange
ments, registering the death, liaising with the undertaker and collect
Ben's ashes, which were to be thrown into the sea at a remote childh
haunt. However the scattering of the ashes was not due until the fol
wing Sunday and the buddy became extremely uncomfortable with
ashes hanging round. They asked me if I could look after them. Co
quently I spent that weekend with Ben Sand's remains lying on my li
33
room floor in an urn that somehow along the way had been place
plastic blue and white Teseo carrier bag. Meanwhile I tried, mostly
successfidly, to watch Match of the Day while Ben's old ashes sat
in the middle of the living room. . .
I now walk in his boots and cook pasta in his pans . . .
34
Acknowledgements
First and foremost my thanks go to Chris Megson, Karen Lane, Ralph
Kobarg, Jackie Mendoza, Stewart Martin, Tony Varchione, the volun-
teers who made this paper possible. Thank you also to the Economic and
Social Research Council for funding this research in the form of a post-
doctoral fellowship and the EEC for a bursary to present a variation of
this paper at the European Association of Social Anthropologists confe-
rence at the University of Vienna in September 2004, and Helena, Petri
and Sharon for organising the conference's workshop on Social Memory.
It is dedicated to Isabel, Dave, Ben, Alex, Mark, Hugh and their re-
spective friends and families.
35
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