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Textbook Phenomenology of Illness 1St Edition Carel Ebook All Chapter PDF
Textbook Phenomenology of Illness 1St Edition Carel Ebook All Chapter PDF
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Phenomenology of Illness
This is a timely, important and beautifully written book. I fully concur with Havi
Carel when she says, “It is not enough to see illness as an entity . . . that can be
studied with the tools of science . . . it also has to be studied as a lived experience.”
Phenomenology could potentially revolutionalize how we understand illness and
inform key improvements in how we diagnose, treat, and research it. This book
would make an excellent addition to the core syllabus for students of medicine,
nursing, and other professions as well as those of the humanities and social
sciences.
Trish Greenhalgh, Professor of Primary Care Health Sciences,
University of Oxford
In this highly original and quite brilliant book, Havi Carel develops a sophisti-
cated phenomenological approach to the study of illness, which does justice to
the profundity, complexity, and diversity of illness experiences. The book offers a
compelling and wide-ranging account of how philosophy can contribute to our
understanding of illness and how the study of illness can enrich philosophy.
More than that, it opens up a whole field for philosophical and interdisciplinary
research, providing us with new ways of thinking about and responding to illness.
This book will be essential reading for anyone seeking to better understand what
it is to be ill.
Matthew Ratcliffe, Professor for Theoretical Philosophy,
University of Vienna
The experience of illness is a rich and multifaceted topic that has not gained
sufficient attention, neither in medicine nor in philosophy. In this book Havi
Carel remedies this lack by exploring the phenomenology of embodiment,
vulnerability, and mortality. She develops a systematic and comprehensive account
of how to think about being ill that will be immensely helpful to healthcare
professionals and patients. And she shows how illness may be viewed as an
unwelcome invitation to philosophize about the big topics of life and grow wiser
in the process.
Professor Fredrik Svenaeus, Södertörn University
Havi Carel
1
3
Great Clarendon Street, Oxford, OX2 6DP,
United Kingdom
Oxford University Press is a department of the University of Oxford.
It furthers the University’s objective of excellence in research, scholarship,
and education by publishing worldwide. Oxford is a registered trade mark of
Oxford University Press in the UK and in certain other countries
© Havi Carel 2016
The moral rights of the author have been asserted
First Edition published in 2016
Impression: 1
All rights reserved. No part of this publication may be reproduced, stored in
a retrieval system, or transmitted, in any form or by any means, without the
prior permission in writing of Oxford University Press, or as expressly permitted
by law, by licence or under terms agreed with the appropriate reprographics
rights organization. Enquiries concerning reproduction outside the scope of the
above should be sent to the Rights Department, Oxford University Press, at the
address above
You must not circulate this work in any other form
and you must impose this same condition on any acquirer
Published in the United States of America by Oxford University Press
198 Madison Avenue, New York, NY 10016, United States of America
British Library Cataloguing in Publication Data
Data available
Library of Congress Control Number: 2016938536
ISBN 978–0–19–966965–3
Printed in Great Britain by
Clays Ltd, St Ives plc
Links to third party websites are provided by Oxford in good faith and
for information only. Oxford disclaims any responsibility for the materials
contained in any third party website referenced in this work.
To Solomon, my brave and beautiful boy
To Joel, my funny valentine
To Samir, again and always
Contents
Acknowledgements ix
Introduction 1
1. Why Use Phenomenology to Study Illness? 14
2. Phenomenological Features of the Body 40
3. The Body in Illness 65
4. Bodily Doubt 86
5. A Phenomenology of Breathlessness 106
6. Is Well-being Possible in Illness? 130
7. Illness as Being-towards-Death 150
8. Epistemic Injustice in Healthcare 180
9. The Philosophical Role of Illness 204
Bibliography 229
Index 243
Acknowledgements
This book has emerged from a decade of writing, thinking, and speaking
about illness, as well as living with it. Countless conversations, texts,
events, emails, and images have contributed to the making of this book,
and I am grateful to very many collaborators, interlocutors, friends,
family, and colleagues.
I am grateful to the British Academy for awarding me a Mid-Career
Fellowship in 2012–13, during which I wrote a first draft of this book.
The Wellcome Trust awarded me a Senior Investigator award in 2014,
and with the generous help of the Trust I completed work on the book.
I thank Peter Momtchilhoff, commissioning editor for philosophy at
Oxford University Press, for his support and guidance during the prep-
aration of this book. Thanks also go to Eleanor Collins, Marilyn Inglis,
Susan Frampton, and Banupriya Sivakaminathan, for their help with the
production of the book. I am grateful to the two anonymous reviewers
who made many helpful suggestions.
Work on the book started in earnest just as I joined the University of
Bristol. I am grateful to my colleagues and collaborators here for fruitful
discussions of illness and philosophy, and for the many ways in which
friends and colleagues make life better. In particular I thank John Lee for
pleasurable work together on the intercalated BA in medical humanities
and for lovely French pastries. Joanna Burch-Brown suggested a useful
restructuring of the book at an early stage. I thank Catherine Lamont-
Robinson, an artist and arts and health practitioner and academic, and
Louise Younie, a remarkable GP, for many shared conversations and
joint work. I am grateful to Richard Pettigrew, the best colleague one
could have, and to Giulia Terzian and Dagmar Wilhelm, for their
friendship and support, often in the form of chocolate.
I am grateful to my previous colleagues at UWE, Bristol for their
collegiality, friendship, and ideas. I thank Greg Tuck, who read draft
chapters and commented on them in great detail. I thank Darian Meac-
ham for comments on the book’s material and for enjoyable work on a
conference and edited volume on phenomenology and naturalism, from
which I learned a great deal. I also thank Michael Lewis for fruitful
discussions of Heidegger.
x ACKNOWLEDGEMENTS
this book, which have so far garnered little attention from philosophers. In
the final chapter I offer an account of the philosophical productiveness of
illness, but also of its violent mode. Of course the invitation to reflect on
one’s life issued by illness can be met with resistance. Many people, both
healthy and ill, deny, flee, or otherwise resist thinking about vulnerability,
morbidity, and mortality. This reaction stems from the difficult nature of
illness: unwelcome and demanding, it extends its bony fingers to grab,
restrict, and sometimes destroy all that we hold dear: freedom, motility,
agency, action, possibility, and the openness of the future. Perhaps philo-
sophers’ neglect of illness is one sort of such denial, or an attempted
falsification (in the Nietzschean sense) of the realities of life through wilful,
although often unconscious, blindness to its uglier faces.
Contra the philosophical tendency to resist thinking about illness,
I propose that illness is a philosophical tool. Through its pathologizing effect
illness distances the ill person from taken-for-granted routines and habits
and thus reveals aspects of human existence that normally go unnoticed. For
example, in Chapter 4, I claim that we have a tacit sense of bodily certainty
that only comes to our attention when it is disrupted and replaced by bodily
doubt. As such, illness is a useful philosophical tool for shedding light on the
structure and meaning of both normal and pathological human experience.
Developing a systematic understanding of illness as a philosophical
tool is another task the book sets out to achieve. It seeks to clarify and
elaborate the philosophical value and usefulness of illness and to explore
the ways in which philosophy may make use of illness. This, too, is
something philosophers have not, with few exceptions (e.g. MacIntyre
1999), engaged in previously. But if we turn to sciences such as neurology
or developmental psychology, we find that illness, or pathology more
generally, has many established uses. For example, the study of the effects
of brain injury can help us understand the normal function of a brain
region (Gallagher 2005). The study of the results of lack of stimulation
and nurturing in infancy can lead to insight about the contribution of
such input to normal child development (Gerhardt 2004). Viewing
illness as a subcategory of pathology and using it in an analogous way
to understand the normal structure of human experience has much to
offer philosophy.
What we have, therefore, is a bilateral flow from philosophy to illness
and back. Philosophy, and in particular phenomenology, can be used to
understand the experience of illness, and illness can be used to shed new
INTRODUCTION
of reducing the former to the latter. It then turns to mental and somatic
illness and outlines their shared aspects. The chapter also explains the
rationale behind a methodology focusing on first-person reports and sets
out the possibilities, both theoretical and practical, for developing such
an approach.
Chapter 2 offers a phenomenological framework through which to
study illness. The framework developed in this chapter consists of five
interconnected themes that offer a comprehensive and nuanced account
of the experience of illness. The first theme is S. Kay Toombs’s analysis
of the shared features of illness as a series of five losses: loss of wholeness,
certainty, control, freedom, and loss of the familiar world. The second
theme is the distinction between the objective body and the body as lived,
which Husserl and Merleau-Ponty put forward as a fundamental view of
the body. This chapter demonstrates how this distinction is useful for
understanding the difference between disease and illness (presented in
Chapter 1), as well as for explaining communication problems in the clinic.
The third theme is Sartre’s three orders of the body: the body as
objective and as subjective, but also the order of intersubjectivity,
which is the body as I experience it as reflected in the experience of
others. I use Sartre’s account to expound Husserl and Merleau-Ponty’s
view presented in the previous section. The third order of the body
contains diverse experiences that make us conscious of how one’s body
is perceived by others and how this affects one’s own understanding of
their body. The fourth theme examines the claim that the healthy body is
transparent, or absent, and illness is the loss of this transparency.
I discuss the limitations of this view and ask whether the healthy body
really is transparent, offering examples of lost transparency within
health. Finally, using Heidegger’s tool analysis I suggest that illness is a
breakdown of ‘bodily tools’. I argue that although the body is not a tool in
the Heideggerian sense, his taxonomy of tool breakdown is analogous to,
and hence useful for, an account of illness.
These five phenomenological analyses cumulatively provide us with a
general framework for a phenomenology of illness. Chapter 3 uses this
framework to describe the body in illness, positing illness as a unique
way of being in the world. Using the framework developed in the
previous chapter, the chapter examines how the lived body changes in
illness, as well as how the physical and social worlds of the ill person are
modified as a result of illness. The chapter opens with a fleshing out of
INTRODUCTION
This opening chapter suggests that phenomenology is apt for the philo-
sophical study of illness. It is worth reminding the reader here again that
the term illness is used within this work to denote serious and life-
altering conditions, rather than mild ones, such as the common cold.
This chapter begins by contrasting illness and disease and discussing the
problematic tendency dominant in some medical quarters to reduce the
former to the latter. It also discusses mental and somatic illnesses and
outlines their shared aspects. The chapter then explains the choice of a
methodology focusing on first-person reports and explicates the possi-
bilities, both theoretical and practical, for developing such an approach
to illness. It outlines the advantages of a phenomenology of illness, as
uniquely suited to a philosophical analysis of one’s experience of illness.
The chapter suggests that illness (as opposed to disease) is a complete
transformation of one’s life. As such we must enlist philosophical analysis
in order to fully appreciate the existential transformation illness brings
about. This transformation cannot be accounted for as merely physical or
mental (in the case of psychiatric disorder) dysfunction. Rather, there is a
need for a view of personhood as embodied, situated, and enactive, in
order to explain how local changes to the ill person’s body and capacities
modify her existence globally. Although they did not write explicitly about
illness (with the exception of some passages in Sartre) Husserl, Merleau-
Ponty, Heidegger, and Sartre offer a phenomenological framework for
understanding human experience in general. I adapt this framework and
use it to develop a philosophical account of illness.
Illness is a breakdown of meaning in the ill person’s life. Because of the
disruption of habits, expectations, and abilities, meaning structures are
destabilized and in extreme cases the overall coherence of one’s life is
WHY USE PHENOMENOLOGY TO STUDY ILLNESS ?
1
The patient toolkit described in Chapter 8, this volume, aims at enabling this
process.
WHY USE PHENOMENOLOGY TO STUDY ILLNESS ?
2
I do not intend to give a detailed account of this world view here, since what drives our
everyday tacit understanding of medicine and of illness is not a nuanced account, but an
inherited set of assumptions (for a critical discussion see Goldacre 2009).
3
For more on modern medicine and its achievements, see Porter (1999). For a critical
view see Wootton (2006) and Bishop (2011).
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To obey the behests of the democratic caucus of this body, whose
leadership on this floor, whose representative national authority—
the one here and the other elsewhere—have championed the cause of
the Bourbon-funder party in Virginia, would be an obsequious
surrender of our State policy and self-condemnation of our
independent action.
The desire of our people for cordial relations with all sections of a
common country and the people of all the States of the Union, their
devotion to popular education, their efforts for the free enjoyment of
a priceless suffrage and an honest count of ballots, their
determination to make Virginia, in the public belief, a desirable
home for all men, wherever their birthplace, whatever their opinions,
and to open her fields and her mines to enterprise and capital, and to
stay the retrograde movement of years, so as to bring her back from
the fifteenth in grade to her original position among the first in the
sisterhood of States, forbid that my action here should be controlled
or influenced by a caucus whose party has waged war upon my
constituency and where party success is held paramount to what I
conceive to be the interests of Virginia and the welfare of the whole
country.
The readjusters of Virginia have no feeling of hostility, no words of
unkindness for the colored man. His freedom has come, and whether
by purpose or by accident, thank God, that among other issues which
so long distracted our country and restrained its growth, was
concluded, and I trust forever, by the results of the sanguinary
struggle between the sections.
I have faith, and it is my earnest hope, that the march of an
enlightened civilization and the progress of human freedom will
proceed until God’s great family shall everywhere enjoy the products
of their own labor and the blessings of civil, political, and religious
liberty.
The colored man was loyal to Virginia in all the days of conflict and
devastation which came of the heroic struggle in the war of sections
that made her fields historic. By no act of his was either the clash of
arms provoked or freedom secured. He did not solve his duty by
consideration of self-interest.
Speech of Hon. Justin S. Morrill, of Vermont,
If we had been under the banner of free trade in 1873, when the
widespread financial storm struck our sails, what would have been
our fate? Is it not apparent that our people would have been stranded
on a lee shore, and that the general over-production and excess of
unsold merchandise everywhere abroad would have come without
hindrance, with the swiftness of the winds, to find a market here at
any price? As it was the gloom and suffering here were very great,
but American workingmen found some shelter in their home
markets, and their recovery from the shock was much earlier assured
than that of those who in addition to their own calamities had also to
bear the pressure of the hard times of other nations.
In six years, ending June 30, 1881, our exports of merchandise
exceeded imports by over $1,175,000,000—a large sum in itself,
largely increasing our stock of gold, filling the pockets of the people
with more than two hundred and fifty millions not found in the
Treasury or banks, making the return to specie payments easy, and
arresting the painful drain of interest so long paid abroad. It is also a
very conclusive refutation of the wild free-trade chimeras that
exports are dependent upon imports, and that comparatively high
duties are invariably less productive of revenue than low duties. The
pertinent question arises, Shall we not in the main hold fast to the
blessings we have? As Americans we must reject free trade. To use
some words of Burke upon another subject: “If it be a panacea we do
not want it. We know the consequences of unnecessary physic. If it
be a plague, it is such a plague that the precautions of the most
severe quarantine ought to be established against it.”
COMMERCIAL PROTECTION.
The sum of our annual support bestowed upon the Navy, like that
upon the Army, may be too close-fisted and disproportionate to our
extended ocean boundaries, and to the value of American commerce
afloat; yet whatever has been granted has been designed almost
exclusively for the protection of our foreign commerce, and amounts
in the aggregate to untold millions. Manufacturers do not complain
that this is a needless and excessive favor to importers; and why,
then, should importers object to some protection to a much larger
amount of capital, and to far greater numbers embarked certainly in
an equally laudable enterprise at home?
THE THEORY.
But English free trade does not mean free trade in such articles as
the poor require and must have, like tea and coffee, nor in tobacco,
wines and spirituous liquors. These articles they reserve for
merciless exactions, all specific, yielding a hundred millions of
revenue, and at three times the rate we levy on spirits and more than
five times the rate we levy on tobacco! This is the sly part of the
entertainment to which we are invited by free-traders.
In 1880 Great Britain, upon tobacco and cigars, mainly from the
United States, valued at $6,586,520, collected $43,955,670 duties, or
nearly two-thirds as much as we collect from our entire importations
of merchandise from Great Britain.
After all, is it not rather conspicuous hypocrisy for England to
disclaim all protection, so long as she imposes twenty-nine cents per
pound more upon manufactured tobacco than upon
unmanufactured, and double the rate upon manufactured cocoa of
that upon the raw? American locomotives are supposed to have great
merit, and the foreign demand for them is not unknown, but the use
of any save English locomotives upon English railroads is prohibited.
Is there any higher protection than prohibition? And have not her
sugar refiners lived upon the difference of the rates imposed upon
raw and refined sugars? On this side of the Atlantic such legislation
would be called protection.
· · · · ·
Queerly enough some of the parties referred to, denounce the tariff
men as but “half-educated,” while, perhaps, properly demanding
themselves exclusive copyright protection for all of their own literary
productions, whether ephemeral or abiding. It is right, they seem to
think, to protect brains—and of these they claim the monopoly—but
monstrous to protect muscles; right to protect the pen, but not the
hoe nor the hammer.
Free trade would almost seem to be an aristocratic disease from
which workingmen are exempt, and those that catch it are as proud
of it as they would be of the gout—another aristocratic distinction.
It might be more modest for these “nebulous professors” of
political economy to agree among themselves how to define and
locate the leading idea of their “dismal science” whether in the value
in exchange or value in use, in profits of capital or wages, whether in
the desire for wealth or aversion to labor, or in the creation,
accumulation, distribution and consumption of wealth, and whether
rent is the recompense for the work of nature or the consequence of a
monopoly of property, before they ask a doubting world to accept the
flickering and much disputed theory of free trade as an infallible
truth about which they have themselves never ceased to wrangle. The
weight of nations against it is as forty to one. It may be safe to say
that when sea-serpents, mermaids, and centaurs find a place in
natural history, free trade will obtain recognition as a science; but till
then it must go uncrowned, wearing no august title, and be content
with the thick-and-thin championship of the “Cobden Club.”
All of the principal British colonies from the rising to the setting of
the sun—India alone possibly excepted—are in open and successful
revolt against the application of the free-trade tyranny of their
mother country, and European States not only refuse to copy the
loudly-heralded example, but they are retreating from it as though it
were charged with dynamite. Even the London Times, the great
“thunderer” of public opinion in Great Britain, does not refrain from
giving a stunning blow to free trade when it indicates that it has
proved a blunder, and reminds the world that it predicted it would so
prove at the start. The ceremony of free trade, with only one party
responding solitary and alone, turns out as dull and disconsolate as
that of a wedding without a bride. The honeymoon of buying cheap
and selling dear appears indefinitely postponed.
There does not seem to be any party coming to rescue England
from her isolated predicament. Bismarck, while aiming to take care
of the interests of his own country, as do all ministers, on this
question perhaps represents the attitude of the greater part of the
far-sighted statesmen of Europe, and he, in one of his recent
parliamentary speeches, declared:
Without being a passionate protectionist, I am as a financier,
however, a passionate imposer of duties, from the conviction that the
taxes, the duties levied at the frontier, are almost exclusively borne
by the foreigner, especially for manufactured articles, and that they
have always an advantageous, retrospective, protectionist action.
Practically the nations of continental Europe acquiesce in this
opinion, and are a unit in their flat refusal of British free trade. They
prefer the example of America. Before self-confident men pronounce
the whole world of tariff men, at home and abroad, “half-educated or
half-witted,” they would do well to see to it that the stupidity is not
nearer home, or that they have not themselves cut adrift from the
logic of their own brains, only to be wofully imposed upon by free-
trade quackery, which treats man as a mere fact, no more important
than any other fact, and ranks labor only as a commodity to be
bought and sold in the cheapest or dearest markets.
So long as statesmen are expected to study the prosperity and
advancement of the people for whose government and guidance they
are made responsible, so long free-trade theories must be postponed
to that Utopian era when the health, strength and skill, capital and
labor of the whole human race shall be reduced or elevated to an
entire equality, and when each individual shall dwell in an equal