The AIDS Crisis and the Modern Self: Biographical Self-Construction in the Awareness of Finitude

256 Pages·2000·6.85 MB·English

by  Sebastian Rinken (auth.)

THE AIDS CRISIS AND THE MODERN SELF
INTERNATIONAL LIBRARY OF ETHICS, LAW,
AND THE NEW MEDICINE
Editors
DAVID C. THOMASMA, Loyola University, Chicago, U.S.A.
DAVID N. WEISSTUB, Universite de Montreal, Canada
THOMASINE KIMBROUGH KUSHNER, University o/California, Berkeley, U.S.A.
Editorial Board
SOLLY BENATAR, University o/Cape Town, South A/rica
JURRIT BERGSMA, Rijksuniversiteit Utrecht, The Netherlands
TERRY CARNEY, University 0/ Sydney, Australia
UFFE JUUL JENSEN, Universitet Aarhus, Denmark
GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, The Netherlands
EVERT VAN LEEUWEN, Vrije Universiteit, Amsterdam, The Netherlands
DAVID NOVAK, University o/Toronto, Canada
EDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A.
DOM RENZO PEGORARO, Fondazione Lanza and University 0/ Padua, Italy
ROBYN SHAPIRO, Medical College o/Wisconsin, Milwaukee, U.S.A.
VOLUME 3
The titles published in this series are listed at the end o/this volume.
THE AIDS CRISIS AND
THE MODERN SELF
Biographical Self-Construction
in the Awareness of Finitude
by
Sebastian Rinken
London School of Economics
and Political Science, United Kingdom
SPRINGER-SCIENCE+BUSINESS MEDIA, B.V.
A C.I.P. Catalogue record for this book is available from the Library of Congress.
ISBN 978-90-481-5484-5 ISBN 978-94-015-9502-5 (eBook)
DOI 10.1007/978-94-015-9502-5
Printed on acid-free paper
All Rights Reserved
© 2000 Springer Science+Business Media Dordrecht
Originally published by Kluwer Academic Publishers in 2000
Softcover reprint of the hardcover 1st edition 2000
No part of the material protected by this copyright notice may be reproduced or
utilized in any form or by any means, electronic or mechanical,
including photocopying, recording or by any information storage and
retrieval system, without written permission from the copyright owner.
To the memory of my brother Thomas
and
to Ana with love
CONTENTS
Preface ..................................................................................... .ix
1. HIV and the self ........................................................................ 1
2. The problem offinitude .............................................................. 19
3. Observing selves ....................................................................... 35
4. The "diagnosis of the self' .......................................................... 56
5. From invalidation to reinforcement. ................................................9 3
6. Seeking shelter amongst peers ..................................................... 113
7. Contrasting patterns ................................................................ .136
8. Mortal, all too mortaL .............................................................. 161
9. Thinking of finitude ................................................................. 180
10. HIV, mortality and the self.. .....................................................2 04
Appendix ................................................................................. 217
Bibliography ............................................................................ 219
Index ...................................................................................... 233
PREFACE
In this book, the biographical self-construction of people with HIVI is analyzed
with a view to the form of subjectivity in contemporary Western society. This
very endeavor makes this book unique. Sociological works dealing with people
who have HIV and with the contemporary self have until now virtually ignored
one another.
The social sciences have produced a vast flood of publications on HIV.
Topics such as the comparison of this pandemic to epidemic diseases of the
past, the scrutiny of public policy and the elaboration of adequate tools of pre
vention have given rise to a sustained stream of articles and monographs.2 Ho
mophobic and stigmatizing reactions, the problem of behavior change with re
gard to sexual practices and drug-use, and the management of somatic illness
and psychosocial distress have also been treated amply.3
1 Throughout this book, "HIV" stands for "Human Immunodeficiency Virus". Where
not otherwise specified, I will use "HIV", "diagnosis ofHIV" and "living with HIV" as
umbrella terms comprising both HIV-infection (i.e. an HIV-positive serostatus) and
HIV-disease (i.e. the manifestation of at least one clinical condition contained in the
defmition of the Acquired Immunodeficiency Syndrome). This is not intended to ne
glect the important differences between the asymptomatic stages of infection and the
severe diseases which may arise as a consequence of having HIV. As I will argue, diag
nosis with either tends to entail two outstanding features: the intense confrontation with
one's own mortality and the continuation of life for potentially many years after diagno
sis. With regard to this inquiry's focus, this justifies a terminological simplification of
the standard formula "HIV/AIDS".
2 Outstanding publications on these subject matters include AggletonlDavieslHart
(Eds.) (1990), Berridge (1996), Berridge/Strong (Eds.) (1993), FeelFox (Eds.) (1988),
FeelFox (Eds.) (1992), Feldman (Ed.) (1990), Fineberg (1988), Fineberg (1988a),
Graubard (Ed.) (1990), Herdt/Lindenbaum (Eds.) (1992), JoneslBishop (1990),
KirplBayer (Eds.) (1992), Mack (Ed.) (1991), MisztaVMoss (Eds.) (1990), Nel
kinlWillislParris (Eds.) (1991) and Steffen (1996).
3 In addition to many of the titles listed in the previous footnote, see also Ahmed (Ed.)
(1992), Bayer (1991), Cameron (1993), Crocker/Major (1989), Dalton et al. (Eds.)
(1987), KalichmaniSikkema (1994), Mann et al. (Eds.) (1992), Namir et al. (1987),
O'Malley (Ed.) (1989), Parmet (1989), Pollak (1988), Prittwitz (Ed.) (1990) and Sills
(1994). On the experience of living with HIV, compare the detailed literature review in
chapter 1.
x PREFACE
Some of this literature refers to "the self' - for instance when describing the
way in which stigmatization can affect self-esteem. By and large, however, the
use of the term "self' has been limited to the application of established labels of
social psychology. The historical and cultural specificity of the self in contem
porary Western society has not been taken into account by the existing literature
on HIV. No attempt has been made as yet to relate the biographical work of
persons with HIV to the situation of the contemporary Western self.
The current debate on the contemporary Western self, on the other hand, has
not taken HIV into consideration at all. More generally, the debate on the self
has ignored the problem of human finitude, i.e. the intense awareness of being
mortal.4 Such awareness of mortality may be triggered by a number of situa
tions, including notably the diagnosis ofHIV.
The omission of finitude from the sociological debate on the self is not inci
dental. That whole debate is based on the premise that contemporary Western
individuals can take the possibility of future revisions of their self-construction
for granted. To some extent, this assumption reflects a basic historical fact: in
the course of the last century, life expectancy has risen impressively. At birth,
people in industrialized countries now enjoy a life expectancy of more than
seven decades; death is confined more and more to old age. It is quite tempting
to perceive such unprecedented longevity as entitlement. The problem of facing
one's own impending death has, in contemporary Western society, come to be
largely restricted to times and places which are removed from everyday social
life.56 Most people do not perceive any need to take mortality seriously.
Yet mortality continues to be a basic condition of life for contemporary
Western individuals just as much as for any other human being. The diagnosis
4 As far as the contemporary Western experience of mortality is concerned, "finitude" is
a synonym of "mortality": for the first time in history, the vast majority of the popula
tion does not associate mortality with the prospect of some sort of rebirth or Afterlife. I
will therefore use mortality and fmitude interchangeably throughout most of this book -
except when dealing with the experience of mortality in other times or cultures. By the
same token, the term fmitude can be used to stress the historical specificity of the con
temporary Western experience of mortality. In this sense, this is a book specifically on
the experience of finitude as opposed to the experience of mortality in other times and
cultures.
5 From the vast historical and sociological literature on this subject, compare Aries
(1975/1974; 1977/1981), Clark (Ed.) (1993), Feifel (Ed.) (1959; 1977), Feld
mannlFuchs-Heinritz (Eds.) (1995) and Fulton (Ed.) (1976).
6 Whenever the author's name is followed by bracketed year indications that are divided
by a semicolon, these refer to distinct titles. When the author's name is followed by two
bracketed year indications divided by a slash, the first refers to a title originally pub
lished in a language other than English, the second to the title's English translation.
PREFACE xi
of HIV is just one of the many instances which may cause the acute awareness
of finitude. Against other such instances, it stands out due to a combination of
two factors: the intensity of the shock caused by diagnosis and the relatively
long time of survival enjoyed by many after that event. When emerging in the
1980s, this pandemic became the symbol of death in Western industrialized
countries. As a result, the diagnosis of HIV has typically disrupted the biogra
phies and social relations of the affected profoundly.
Starting in the late 1980s, and increasingly since the mid-1990s, HIV has
come to be perceived as a potentially chronic disease. This is largely due to the
availability of new treatment options. Especially for people who were diagnosed
early on, the chronic nature of mv is an experience that intimately affects their
own lives. In sharp contrast with the prospect of imminent death that was typi
cally associated with the diagnosis, many people with HIV have had a lot of
time to reflect on their lives - while remaining intensely aware of their own
finitude. Their autobiographical reflections include an assessment of the impact
which the event of diagnosis had on their lives and selves. Indeed, the self-con
struction of people with HIV is typically centered upon such an assessment. For
many people with HIV, diagnosis constitutes a - or even the - crucial bio
graphical turning-point. The biographical self-construction of people with HIV
is typically centered on the distinction of a before and an after as marked by that
event.
Now, from the acknowledgement that one's life and self-construction have
been significantly influenced by a specific event, it is apparently only a small
step to the acknowledgment that one's life and self would have developed dif
ferently in its absence. In fact, the latter statement is implicit in the former. Yet,
as we will see, the acknowledgment that one's present self-construction would
be different had one not been diagnosed with HIV seems to pose a problem. In a
number of respondents to this inquiry, I have observed a tension between the
statement that the. diagnosis of HIV made a substantial difference and the state
ment that, beyond or beneath that difference, there is a fundamental stability at
the level of self-cognition. Interpreting the overall impact of HIV in terms of
self-actualization, these people conceived the self-transformation which was
induced by the diagnosis of HI V as subordinate to enhanced self-knowledge.
As I will argue, this way of generating a sense of stability and necessity in
the face of dramatic change is indicative of a profound crisis of contemporary
Western culture. Self-actualization, I suggest, is a historically and culturally
specific form of subjectivity which allows people to reject the insight that their
sense of identity is contingent upon specific events. Self-actualization thus re
veals a burning need. In the absence of an indisputable external principle of
order, the burden of maintaining a sense of necessity despite disruptive events is