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201009_abstracts

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									Concepts of Health and Illness
Multidisciplinary AHRC-funded Conference
           1-3 September 2010
        Q Block, Frenchay Campus
               UWE, Bristol



            ABSTRACTS
Concepts of Health and Illness Conference 2010
1-3 September 2010
UWE, Bristol, UK



Christien van den Anker (UWE, Bristol, UK)

Between eugenics and inclusion: what model of disability rights?

The recent UN Convention on the Rights of Persons with disabilities states that 'disability is an
evolving concept and disability results from the interaction between persons with impairments and
attitudinal and environmental barriers that hinders their full and effective participation in society on an
equal basis with others'. The Convention is groundbreaking in shifting the paradigm from international
law viewing disabled people as those in need of receiving special care to disabled people as persons
with entitlements to fully participate in society on an equal basis with others. Does this mean we are
now moving towards a social model of disability as a global norm? However, this is problematic from
several angles. A social model of disability recognises the role of constructing society in an exclusive
fashion, yet does not provide a fully inclusive model of society. The question should therefore be
raised what an inclusive model rather than a social model of disability as a global norm would imply.

In this paper I will address this question critically by looking at three elements of te debate in more
detail. Firstly, I will conceptually clarify how these models of disability differ and to what extent the
convention represents one rather than the other. Second, I will assess to what extent these global
norms can be accessible worldwide and what level of cosmopolitan duty speaks from the convention
in realising disability rights for all. Thirdly I question why the convention is silent on the biggest barrier
to disabilitiy rights: the ongoing popularity of the eugenic ideology which puts pressure on everyone
notwithstanding (whether or not they classify themselves as having an impairment) as in need of
perfecting. The convention defends the right to life for everyone but fails to acknowledge the targeting
of foetuses with impairments or the discouragement of reproduction and forced sterilisation of people
with genetic disorders or from specific groups such as undocumented migrants, Roma, people with
learning difficulties and mentally ill.

The paper will discuss these issues from the perspective of having been diagnosed with Parkinsons'
disease and exploring the related feelings to have been a potential target of abortion if my mother had
known, or a target of Nazi-destruction if I had lived then.


Elisa Arnaudo (Bologna University, Italy)

Pain as illness

Distinguishing between acute and chronic pain and defining chronic pain as illness has revolutionized
medical conception of pain and has offered a theoretical tool for the creation of a specialized branch
of medicine primarily devoted to the study and the management of pain.
I want to argue that the definition of pain as illness presents some interesting features concerning the
definition of illness itself.

First of all, following the widely accepted definition given by IASP (International Association for the
Study of Pain) pain is “an unpleasant sensory and emotional experience associated with actual or
potential tissue damage, or described in terms of such damage(…) pain is always subjective(…)
Many people report pain in the absence of tissue damage or any likely pathophysiological cause;
usually this happens for psychological reasons. There is usually no way to distinguish their
experience from that due to tissue damage if we take the subjective report. If they regard their
experience as pain and if they report it in the same ways as pain caused by tissue damage, it should
be accepted as pain.”

Pain has a peculiar epistemic status: as object of study in medicine it should be measurable, while as
human experience it is always subjective, therefore epistemic authority seems to be given to the
person who is in pain. Furthermore, there is a considerable difference between nociception, the
neural process of encoding and processing noxious stimuli, and the perception of pain, defined as a
psychological state; suffering, that is an affective negative response given to pain or other emotional
events, remarks subjectivity issues because everyone assigns different meanings to his/her own
experience. In addition, suffering has relevant psychological and physiological consequences (i.e.,
anxiety and depression can enhance the perception of pain). Moreover, neurophysiological studies


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1-3 September 2010
UWE, Bristol, UK



have pointed out the multidimensional nature of pain, underling that the affective-motivational
component of the experience is one of the main aspects of pain phenomenon; thus an action
exclusively addressed to stop neural mechanism of pain cannot be effective.

Chronic pain, recognized as an illness, is defined as the pain that lasts longer than the usual course
of an acute injury or disease. The difference between chronic and acute pain is not temporal, but
physiological, psychological, behavioral and this entails the necessity for medicine to understand this
illness in its lived dimension. My aim is to examine whether the understanding of pain as illness
changed the concept of illness itself and to analyze the main features of this new approach.


Valérie Aucouturier (Université Paris 1/ University of Kent, France & UK)
Steeves Demazeux (Université Paris 1)

The concept of “mental disorder”

In the last forty years or so, there has been many attempts to provide a general and useful
definition of the concept of “mental disorder”. These attempts nearly all have in common some
general methodological precept: they rely on so-called conceptual analysis broadly understood
as a philosophical process that seeks to put together a number of necessary and sufficient
conditions for the application of a specific term, which is either borrowed from ordinary language
or part of a scientific vocabulary. In this presentation, which is articulated in two parts, we shall
question the well-foundation and the relevance of this method in its application to the domain of
mental health.

In the first half of the paper, which will be presented by Valérie Aucouturier, we will draw
attention on the philosophical presuppositions which may underlie the application of the method
of conceptual analysis. The main ambiguity raised by the application of this method to the
concept of “mental disorder” – which has been pointed at by many authors – lies within an
hesitation between a descriptive approach of the everyday concept of “mental disorder” in
ordinary language and a prescriptive approach which would mainly concentrate on the
necessary and sufficient conditions of a proper usage of this term in a scientific psychiatric
context so that it remains consistent throughout. It seems however that there is an irreducible
gap between these two approaches. One reason is that they seem to be misled about the kind of
job conceptual analysis is able to perform.

On the one hand, if it is to be a sort of psychological, anthropological or sociological
investigation, then psychologists and sociologists are methodologically best armed to untie the
intricate, sometimes equivocal or polymorphic uses of the man of the street's notions of “mental
disorder” or of “mental disease”. The will to grasp the core representation of the term “mental
disorder” within ordinary uses of language understood as a supposed common core of shared,
but vague, intuitions seems delusive: at best it arbitrarily reduces the variety of uses to some
very indeterminate widely shared intuitions, like “something is going wrong in the person
concerned”, which does not teach us much theoretically.

On the other hand, conceptual analysis conceived as the analysis of the concept of “mental
disorder” as a natural kind term raises its own difficulties. This view inspired by the causal
theory of meaning (Kripke 1980, Putnam 1975) consists in arguing that part of the meaning of a
natural kind term (and of other sorts of names) is its referent: the thing in the world that it refers
to. Although it may appear more legitimate in theory since it aims at building a genuinely
scientific vocabulary, it is in practice at least as much ambiguous as the former conceptual
approach because it presupposes that the term “mental disorder” be straightforwardly unified
and clearly identified within the discourse of psychiatry, just like the concepts of “water” in
chemistry and the concept of “function” in biology are.

But to suggest so is to ignore something Wittgenstein already noticed (cf. Lilienfeld, S.O.,
Marino L., 1995): that far from being clearly disconnected from each other our various uses of
concepts are intertwined and linked by what he calls “family resemblances”. On this ground,
since psychological concepts borrow from our ordinary concepts, it is at least as much delusory


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UWE, Bristol, UK



to disconnect the “scientific” use from the “ordinary” uses as it is to try to build a scientific
concept out of “ordinary discourses” (cf. Rosch, E.R., & Mervis, C.B., 1975).
Drawing mainly on the work of Wittgenstein and Millikan, the first part of this presentation shall
attempt to identify the main philosophical and linguistic reasons which undermine the project of
using conceptual analysis in order to build a unified concept of “mental disorder”.

The second half of the paper will be presented by Steeves Demazeux who shall attempt to
circumscribe the specific task that has been attributed in psychiatry to the definition of an
overarching concept of mental disorder in the last forty years. To do so we will mainly rely on a
methodological reflection based on an historical epistemology “à la française”. We shall first
insist that the seminal project to get to a non-equivocal definition of the concept of “mental
disorder” was initially taken care of by psychiatrists and medical doctors (e.g. Spitzer and
Endicott) before it came to the interest of philosophers. The aim was to argue against several
objections coming from anti-psychiatrists (notably Szasz) or sociologists (notably Scheff). who
thought that the concept of “mental disorder” aimed mainly at stigmatizing socially disapproved
behaviours. The idea was to provide an operational definition of mental disorder which would
serve as a rule for including specific conditions in or excluding them from the official
classification, the DSM.

The problem took a slightly different turn when it came into the hands of philosophers. We shall
remind the structuring and determining role played in this debate by the fact/value distinction,
the sharpness of which keeps surprising most French epistemologists. Far from questioning the
well-founded character of this distinction, we shall however indicate how it led to polarize the
debates in a direction which did not necessarily help to shed light on the genuine controversies
to which psychiatry is actually confronted. To insist, on the one hand, on the scientific character
of the concept of “mental disorder” left quite indeterminate the kind of scientific “facts” which
were supposed to legitimate the belonging of a certain condition to the sphere of mental
disorders. To insist, on the other hand quite reasonably on the irreducible role played by values
in the characterization of mental disorders, did not either bring much light on the best way of
solving specific epistemological issues with which the psychiatric discourse is confronted.
But the key element on which we shall insist more particularly is the implicit assumption of the
various definitions in relation to issues concerning health politics.

It is striking how the results of a method, conceptual analysis, which pretends to objectively
“analyse” the ultimate components of a concept, can provide such distinct results depending on
the belonging of its author to a given health-care system. It is not by chance, according to us,
that a more holistic approach of health, like Nordenfelt's, raises a great interest in France and
perhaps in Europe, but is still largely being ignored in the U.S.A, where most authors focus on a
naturalistic account of “disease” and “disorder” and defend a conception of health as the mere
absence of disease. We shall also question the usefulness, claimed by some scholars, of relying
on a naturalistic account of mental disorder to distribute scarce resources in health care systems
nowadays.


Konrad Banicki (Jagiellonian University, Poland)

The positive and holistic ideal of health in ancient virtue ethics

The modern medical practice and theory have been usually informed by the notion of health that can
be formally characterised as negative and mechanical (non-holistic). It seems to be a case not only
for a somatic health but also for the phenomenon that came to be called a mental health. At the same
time, however, the alternative conceptions of health, positive, or holistic, or both, have been also
proposed. It makes the meta-theoretical issue of health concept still open for a further scrutiny.

Any discussion of a meta-theoretical kind tends to be circumscribed by the paradigmatic perspective
from which it is inspired, formulated and held. In short, it is confined by the scope of meta-theoretical
positions that are considered as plausible (thinkable) by the participants involved. In order to, at least
partially, exceed such a limitation it may be a promising step to investigate a meta-theoretical outlook



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UWE, Bristol, UK



that is substantially different from ones own. Such kind of a meta-theoretical tourism may, shortly, pay
off.

The place of a meta-theoretical tourist value to which I would like to invite in my paper will be ancient
Greek Athens. More precisely, I will investigate the ideal of health embedded in the ancient virtue
ethics and which, I shall argue, can be of vital interest for the modern health professional and/or
theoretician. The emphasis of my paper will be especially laid on the ideas that can be found in
Aristotle's 'Nicomachean Ethics' and the philosophy of the Stoic school. As Martha Nussbaum, among
others, has shown the ethical ideas developed by both the latter and the former were often depicted
through the explicit medical analogy and can be read as a kind of therapeutic endeavour. As such
they involve, more or less explicitly stated, ideal of health which, I will argue, can be found in their
view of virtue(s) of character as the aim of philosophical therapy.

After the short review the health ideal in question will be compared with the modern view of health
developed by Lennart Nordenfelt. Such a comparison seems to be interesting both for the reason of
the striking similarities and the substantial differences present. As far as the former is concerned, the
idea of moral health of Aristotle and the Stoics is explicitly positive and holistic. It is the whole person
who is healthy and it seems that any more mechanistic (atomistic) position would have been hardly
conceivable for the Greeks. Furthermore, the very notion of health is conceptually interrelated to the
one of happiness (welfare). On the other hand, there are considerable and interesting differences to
be found. Namely, although Aristotle would agree with Nordenfelt in saying that health is not sufficient
for happiness, he would not carried on to acknowledge that it is not necessary. The Stoics would deny
both of these theses. Another point of possible difference, at least in terms of the accent laid, can be
found in health being understood in terms of subjective goal setting and pleasures (Nordenfelt) and
with the reference to objective norms of human nature (the Ancients).

It will be argued that both the similarities and the differences found between the two positions
investigated can be better understood if the different contexts are taken into account. Nordenfelt
proposes the idea of health that is originally designated to inform a modern medical practice,
concerning both somatic and psychological dimensions of health, with its relative value neutrality. The
moral philosophers, on the other hand, developed the health notion that is intrinsically connected with
the explicitly normative account of human nature and the final goal. These diverse vantage points
can, at least partially, account for the differences between the health concepts that are to some point
very similar.


Claudia Bartolucci (University of Perugia, Italy)

The concept of health from truth to security

The research focuses on a philosophical assessment of the concept of “health” and its changes
starting from epistemology of Georges Canguilhem until the current debate about the foucauldian
“biopolitics” (cf. AA.Vv., Lexique de biopolitique. Les pouvoirs sur la vie, sous la direction de O.
Marzocca et al., Toulouse 2009). Canguilhem’s epistemological discourse moves from a critique of
the distinction between normality and pathology in the history of the medicine (cf. Le normale et le
patologique, 1966), but the relevance of his thought consists mainly on his remarks on the possibility
of a different conceptualization of the living, able to come it out from scientific knowledge and its
conceptions of normality and health. By the way this paper addresses at least two central questions:
The “negative” concept of health as “the truth of the body” that crosses the modern philosophical
tradition (cf. mainly I. Kant, Der Streit Der Fakultaten, 1798) and the history of medicine by identifying
health with “the silence of the organs”. This conception undergoes a shift in the history of science,
marked by the progressive separation of the disease form who is affected by it, until reaching the
reformulation of health in terms of “security”. (cf. G. Canguilhem, La Santé concept vulgaire et
question philosophique).

The “positive” concept of health, introduced by the Science of Hygiene, that concerns security. Health
as the truth of the body turns into a “technology of security” on behalf of population and this change is
related in France to the born of Public Hygiene as the science of public health. So, following
Canguilhem, pathology from an organic défaillance becomes a deficit of the budget (cf. Tissot, Avis


Concepts of Health and Illness 2010 - Abstracts                                                       Page 5
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au peuple sur sa santé, 1761; Tourtelle, Higiene, 1797) that regards the administrative control of
population. Afterwards, health turns into security in the double sense of “an insurance on behalf of risk
and of an audacity to run it” (cf. G. Canguilhem, Les Maladies, in Écrits sur la médecine).

This perspective is strictly related to Foucault’s work, that in his Naissance de la clinique. Une
archéologie du regard médical (1963) already traced a history of the origins and changes of the
paradigms within the modern medicine, besides of its institutional and political practices. A more
radical reformulation of the question about health - related to the concept of “biopolitics” - can be
recovered in the foucauldian themes arising from the Courses (cf. Sécurité, territoire, population,
1977-1978) and on his project of a history of “Governamentality” (cf. Naissance de la biopolitique,
1978-1979). Hence, between the pole regarding disciplines - the “political-anatomy of human body” -
and the pole concerning biopolitics of population - centered “on body as species, useful to the
proliferation of biological processes” - a new outline emerges for the comprehension of discourses
concerning the role of normality and the positive construction of health within society (cf. A. Petersen,
R. Bunton, Foucault, Health and Medicine, 1997).


Phil Bielby (University of Hull, UK)

Ulysses Arrangements in Psychiatric Treatment: competence, capacity and supported
autonomy

A ‘Ulysses arrangement’ (or ‘Ulysses contract’) is a means by which competent patients suffering from
episodic mental disorder that bears upon their treatment choices can make advance decisions about
their future treatment, intended to bindingly apply at a later time should they change their mind (see,
e.g., Dresser, 1982). The reasons for giving patients the option to use Ulysses arrangements to
exercise prospective decision-making about their psychiatric treatment are powerful (e.g. Saks, 2002:
203) and recent years have seen a renewed interest in the ethics of justifying and implementing such
arrangements (Spellecy, 2003; van Willigenburg and Delaere, 2005; Davis, 2008; Gremmen, 2008).
Ulysses arrangements designed to take effect in the context of changes of mind issued following the
onset of decisional incompetence may be thought of as ‘competence-sensitive’, whereas those
designed to override competent changes of mind may be thought of as ‘competence-insensitive’.

As Radden notes (1994: 797-798), the ethical controversies that arise in following a Ulysses
arrangement are more pronounced in the latter type, reflected in conflicting accounts of whether
Ulysses arrangements should be honoured with patients who retain decisional competence and who
attempt to revoke them at the time they are intended to apply (e.g. Feinberg, 1986; Radden, 1996,
Davis, op. cit.).

Despite their controversy, it would be hasty to dismiss competence-insensitive Ulysses arrangements
as simply an unjustified encroachment upon future autonomous choice. Indeed, the autonomy and
well-being of the patient and in some cases that of dependent others (Radden, op. cit., 798-799) may
actually be advanced through their use. In this paper, I offer a justification for the limited use of
competence-insensitive Ulysses arrangements that is responsive to the autonomy and participation
interests of the patient with mental disorder. I explain how decisional competence and legal capacity
could be disaggregated to facilitate the creation and implementation of competence-insensitive
Ulysses arrangements in specific circumstances. I then suggest two possible legal models to
operationalize competence-insensitive Ulysses arrangements that allow for varying degrees of
external involvement, which minimize the risk of abandoning the patient to the choices of her earlier or
present self.


John Bird (UWE, Bristol, UK)

Pain, injury and risk amongst women footballers

There is a paucity of research on how girl and women footballers understand and deal with pain and
injury despite the fact that both are part of the normal experience of footballers, regardless of gender.
Most studies of pain and injury in sport are bio-medical and most focus on men. As Young (2004,

Concepts of Health and Illness 2010 - Abstracts                                                     Page 6
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Sporting Bodies, Damaged Selves, London, Elsevier), suggests there is a need for more qualitative
research on women who play sport, particularly in the context of pain and injury.

This paper will report on an ethnographic study of pain, injury and risk amongst girl and women
footballers which is in progress. One driver for this research is concern that girl and women footballers
experience more injuries than their male counterparts and that these injuries may be gendered; for
example, the disproportionate number of non-contact anterior cruciate ligament injuries which girls
and women experience.

The conference paper will seek to address a number of questions:

How do girl and women footballers learn about pain and injury?
How do they learn that ‘toughing it out’ and taking risk is a normal part of being a footballer?
How, when and why does pain become defined as injury?
Why do players routinely deny that they are injured and what are the consequences of this denial?
How do players learn about and conceptualise the body in pain and the injured body?
To what extent are pain and injury gendered?
What is involved in a phenomenology of pain and injury?

The data collection phase of the research is complete and has included interviews with players from
the under-10 age group up to full-England internationals. In addition, interviews have taken place with
coaches, physiotherapists and medical support staff.



Charlotte Blease (Queen’s University, UK)

Mental health illiteracy? The prospects for public education about depression

Depression is the most common mental disorder in the world: diagnostic rates are estimated to be 10
per cent of the adult population per annum worldwide. More than this, depression appears to be on
the rise. Government and health organisation face a huge financial task in educating the public about
diagnosing and seeking help for depression. But how receptive can we expect the public to be?
Employing models of 'folk psychiatric classification' from cognitive science, as well as 'proto-scientific'
models for folk reasoning, I examine the hurdles that public educators may face.


Stella Bolaki (University of Glasgow, UK)

Artists’ books as illness narratives and in the medical community

 “People may not want to ‘touch’ the topics I explore in my books; yet the books invite handling,
touching, interaction” (Martha Hall).

American book artist Martha Hall created around a hundred artists’ books in response to her initial
diagnosis of breast cancer in 1989 and the effects of later recurrences until her death in 2004. The
books consist of poems, prose passages, ironic quotations by health practitioners, and images such
as x-rays and bone scans. They also bear the body’s marks and hold its traces through the inclusion
of hairs as well as autobiographical objects, such as used medical appointment cards and original
prescription bottles. Addressing themes such as the marked body, the temporality of illness, and
boundaries between the ill and the healthy, the books offer a palpable, multisensory experience of the
patient’s world and of the lived experience of illness. In the first part of my presentation, I will focus on
the above themes and explain how through their form and text Hall’s books construct readers as
responsible, in Kelly Oliver’s sense of “response-able”, and therefore engage them as witnesses to
her story of illness.

In I Make Books, a documentary created by the University of New England Media Services
Department in 2003, Hall explains that besides using her books as a form of therapy, she hoped they
would have an impact on future physicians. Several of her books were inspired by specific
interactions with her physicians and nurses. Showing the books to them “elicited various responses

Concepts of Health and Illness 2010 - Abstracts                                                        Page 7
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UWE, Bristol, UK



including denial, disbelief, and discomfort, but overall using the books to communicate with physicians
and nurses had a positive impact on her interactions with the medical community”. Hall’s books are
currently used in Medical Humanities units, and the Maine Women Writers Collection, which owns
twelve of her books, regularly receives requests to have the books used in medical schools across the
United States.

In the second half of my talk I will enquire as to whether artists’ books exploring illness can become
part of a doctor’s training in the context of the ongoing development of Medical Humanities curriculum
units. Artists’ books can be seen from either a clinical distance or close at hand where turning or
unwrapping the pages uncovers more personal feelings and struggles, just as approaching an ill
person involves more than anatomy and physiology or conducting a set of bodily scans. The
advantage of artists’ books over other illness narratives is that materiality is foregrounded so that,
rather than merely having symbolic status, artists’ books constantly return us to the body. The
presentation will include brief excerpts from the film mentioned above, which I am hoping will
generate dialogue and debate (especially among health practitioners) about how artists’ books can be
used by the medical community.


Leslie Bunt (UWE, Bristol, UK)

Music therapy as a resource for people living with cancer

Music therapy, as a resource, can provide the adult living with cancer with a wide range of creative
actions, connections and relationships to support an on-going sense of ‘physical, mental, social,
emotional and spiritual well-being’ (Bunt & Hoskyns, 2002:11). Individuals can use the resources
provided by music such as the different moods and energy levels (described by Tia De Nora as
‘musical affordances’) in their own unique way as ‘appropriations’ to think, feel and act in the world
(De Nora, 2000). This kind of action links to a social constructivist view of health as an evolving sense
of an individual’s personal identity in the world, akin to Aldridge’s view of ‘health as performance’
(Aldridge, 1996). Overall being involved in making music or listening to music can be a holistic
resource contributing to an individual’s on-going quality of life (Ruud, 1998).

The clinical context for this paper is a cancer care centre. A one-off music therapy group forms part of
a week-long residential programme where up to a maximum of twelve participants explore a range of
complementary group therapy interventions alongside individual appointments with a specialist doctor
and psychotherapist. The music therapy session takes place at the mid-point in the programme and
enables the participants to create different structures of improvised music (individual explorations of
instruments; work in pairs, small groups and the whole group) using a range of tuned and un-tuned
percussion instruments, as well as opportunities for some listening to music in a relaxed state.

The music therapist’s (LB’s) approach to the work is music-centred with a philosophical underpinning
from humanistic and transpersonal perspectives (Wigram et al. 2002). Words and music are
integrated subtly as personal and group suggestions are articulated and explored (the presentation
will incorporate a short video illustration). Such suggestions often focus on a dynamic movement from
one set of feelings to another, for example from chaos/despair/anger to cohesion/joy/hope.

The paper will present themes that arose during 23 in-depth individual telephone interviews carried
out by two research collaborators (ND and SM) after six of these approximately one and a half hour
long one-off group sessions. The research approach was exploratory in nature which enabled the
main themes emerging from the participants’ accounts to be indentified and furthered understanding
of the subjective impact of the sessions within this specific context (Daykin et al, 2007).

A selection of themes that arose from the qualitative coding process will be presented including:
search for connectedness, group cohesion, sense of musical meaning and purpose, latent creativity,
transcendence (including shifts of energy levels), sense of identity, well-being and joy. Some themes
such as a sense of power, freedom of choice, enrichment and release were in direct antithesis with
the lack of such aspects felt by the participants whilst coping with the cancer diagnosis and
subsequent treatments. Risk factors will also be identified in addition to the importance for the
therapist to facilitate sessions in a culturally aware and sensitive fashion.


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Caroline Braunmuehl (Universität Hamburg, Germany)

Poststructuralist social criticism and emotional instability:
Is there a norm of felicitous self-(re)constitution beyond 'normalization' and 'identity'?
And do we need one at all?

To those whose lives are debilitated by their emotional instability as well as by loneliness resulting
from impulsive and (for others) 'unpredictable' behaviours on their part—which their contemporaries
experience as problematic-, there may be a tension between the critique of the “psy” disciplines
(Nikolas Rose) associated with poststructuralist theorists, such as Michel Foucault and Gilles
Deleuze, on the one hand and, on the other, a subjective dependence upon institutional forms of
support that would replace, however inadequately, the social support network lacked by those
concerned. From this perspective, being able to integrate long-term into a social network of any kind
is an achievement and a privilege of subjects who are psychologically more robust (or whose
precariousness might take other forms).

But how, if at all, can the desperate longing for some kind of emotional stability or balance which is
experienced by (some of) those who lack it to a degree that causes them severe suffering (and how
can others' criticism of the unsteady and sometimes 'extreme' behaviours in question) be reconciled
with the poststructuralist concern precisely to destabilize the subject—a concern based upon an
insight into the identitarian and normalizing impetus of (some) concepts of the self, and of mental
health, that rely upon notions such as psychological balance, coherence, or even self-identity? Is
there some kind of norm pertaining to psychological/emotional stability that even poststructuralist
critics of such notions recognize, at least implicitly, as being relevant to any kind of felicitous (re-)
constitution of self—and as being presupposed by the ability to form and sustain relationships with
others, however we may understand that ability, specifically?

To the extent that we reject as identitarian and/or normalizing any norm of psychological stability,
continuity or integration, are we merely disavowing our implicit recognition of some such norm? Are
approaches to psychotherapy that appear to abstain from such normativity actually compatible with a
critical perspective upon the social? I derive preliminary answers to these questions by critically
reading Judith Butler's allusions to a non-identitarian concept of psychic integration (in The Psychic
Life of Power as well as Undoing Gender) alongside one seemingly progressive, anti-normative as
well as anti-essentialist psychotherapeutic approach specifically to the diagnostic category of
Emotionally Unstable Personality Disorder of the “Borderline” type—namely, Marsha Linehan's
Dialectical Behavior Therapy (DBT).

Arguing that those who attempt to change cannot forego orienting to norms, I venture to give some
indications as to how a norm of felicitous self-constitution that orients to Judith Butler's theory of the
subject would need to differ from normalizing/ pathologizing concepts of 'mental health' alleged by
poststructuralists to underpin other approaches to psychotherapy, as well as the “psy” disciplines
associated with them.


James Brennan (University of Bristol, UK)

Transitions in Health and Illness

The Department of Health estimates there to be 15.4 million (30% of) people in England living with a
Long Term Condition (what used to be called chronic illness), accounting for 70% of the total health
and social care spend in England. Two million people are living with cancer. This astonishing
success of biomedicine to keep people alive fails to reflect the quality or lived experience of these
many lives that are saved. Whilst physical suffering has never been better ‘controlled’, emotional
distress remains at high levels. How do people negotiate the transitions between illness and health?
Can clinical psychology offer a link between scientific and phenomenological accounts of health and
illness? In this discursive paper, I will outline a biopsychosocial model of adjustment, illustrated with
quotes from diaries kept by people with cancer and drawn from my clinical work in cancer care. I will

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contend that the individual’s assumptive world can account for both positive and negative responses
to major life transitions such as illness and recovery, and that this poses questions about the nature of
healthcare.


Roberto Brigati (University of Bologna, Italy)

Zeroing in on haemophilia: the ontological complexity of a chronic disease

Haemophilia, and haemorrhagic disorders in general, are virtually absent from the landscape of
philosophical research. A few scant remarks by Canguilhem in his 1943 masterpiece almost exhaust
the references in the field of philosophy of medicine, since other contributions may more properly be
assigned to non-philosophical frames of mind or literary genres. Here I will try to show how complex is
the ontology of this pathology is, as it includes temporal and conceptual dimensions that other chronic
conditions lack, or possess in a somewhat different way. In this I will partly be drawing upon my
personal experience and on that of a number of haemophiliacs or parents I had, in the course of the
years, the opportunity of conversing with. Their stories and experiences in the day-by-day managing
of their condition presuppose the complex ontology of an intermittent illness which is apt to
periodically restart on ever changing grounds.

Roughly speaking, there are at least three layers that are relevant to this ontological construction.
First, there is the underlying genetic feature, that does not affect personal experience unless
indirectly, but is apt to soon become a more or less strong element of self-identity. This identifying
power has been progressively weakening in the new generations, due to improved treatment, which
makes younger people more confident and discourages self-identification as “ill persons”. There is,
however, according to some researchers, a growing interest in genetic traits as identity props, and
this trend might possibly involve haemophilic persons in the future.

Second, there are the haemorrhagic episodes themselves, certainly the best known consequence of
the genetic trait, although they are seldom manifested as external bleedings, as is prominent in
popular fantasy about haemophilia, but are more typically bleedings into joints (haemarthrosis) and
muscular tissue. This layer is characterized by lifelong constancy, quasi-regular cyclicity, and de facto
inevitability of the episodes.

Third, the so-called haemophilic arthropathy, which is secondary to repeated haemarthroses and
becomes a chronic condition affecting and in the long run deforming joints (particularly knees, elbows
and ankles). This feature is the most perceptible one to other people, and affects most tangibly the
social interactions of haemophiliacs. To these layers, one might add a further one which consists of
the iatrogenic diseases caused by the transfusional treatment, most notably Aids and hepatitis C.


Havi Carel (UWE, Bristol, UK)

Developing a phenomenological toolkit for patients

In my work I use phenomenology to supply a first-person description of the experience of illness.
Merleau-Ponty’s embodied phenomenology may be useful for describing the lived experience of
illness, given his emphasis on embodiment and on the centrality of perception to human experience.
In previous work I demonstrate how the notions of motor intentionality, intentional arc and the split
between the body as lived and the biological body can illuminate the experience of illness in powerful
and comprehensive ways (Carel 2008, 2009).

One of the problems faced by those who are ill is the poor understanding of healthy people (including
healthcare professionals) of their experience. This problem is often exacerbated by the fact that
patients are not provided with descriptive tools through which they can discern and process their
experience, but are rather understand their experience through questions and prompts given by
healthcare professionals, which are standardised and focus on the physiological dysfunction. This
approach is also deficit-centred thus exacerbating feelings of inadequacy and failure, and creating a
cascade of negative emotions and self-understanding. Patients frequently mimic the physician’s


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discourse about their illness which is physiological and leaves out the first-person voice and may find
it difficult to describe and communicate their experience.

In this paper I aim to address this problem by developing a phenomenological toolkit that can be used
by patients to describe and order their experience of illness.

The questions and challenges in developing this toolkit are:
1. Accessibility of phenomenological terms to a variety of patients.
2. Should the toolkit be specifically tailored to individual conditions, or should a general model be
developed?
3. How would the toolkit help overcome common problems in capturing an experience that is diverse,
varied, changeable and subjective?
4. Should the description be provided once, or have a temporal dimension (e.g. description over
time)?
5. Which dimensions of the experience of illness can be best captured by phenomenological language
(e.g. changes to lived body; emotion dimension; patient-physician interaction; other contact with
healthcare system)?


Antonio Casado, Cristian Saborido & Arantza Etxeberria (University of the Basque Country,
Spain)

Triadic concept of disease and bioethics

The triadic distinction between disease, illness, and sickness has become commonplace in the
medical humanities. First introduced by Twaddle (1968), it has been discussed by many authors and
philosophers of medicine, along with the traditional contrast between naturalist and normativist
concepts of health and disease. The terms of Twaddle’s triad refer to the spheres of physical,
psychological, and social well-being present in the definition of health by the World Health
Organisation, and have been redefined by Hofmann (2002) as calling-for action perspectives on
negative bodily processes, states or events, as conceived of by the medical profession (disease), by
the very person who feels ill (illness), or by society’s institutions (sickness).

In what concerns the purpose of our proposal, the triad helps to link discussions in the philosophy of
medicine with critical bioethical debates, and thus clarify some current controversies over the
meaning of basic principles.

 Our point of departure is Hofmann’s defence of the triad, in which he refines Twaddle’s concepts,
answers some criticisms by Nordenfelt, and argues that the triad is able to address some challenges
in medicine in terms of conflicting perspectives over basic concepts in health care. Such a
biopsychosocial theory, we argue, fits well with the four-principle approach to bioethics, popularised
by many authors after 1979, when the first edition of Principles of Biomedical Ethics (Beauchamp and
Childress 2008) unleashed the four principles of respect for autonomy, nonmaleficence, beneficence,
and justice on the newly emerging field of bioethics.

 Then, we consider how the concepts of health and disease used by B&C to discuss each principle fit
in the triad, as a shift in their arguments can be detected depending on which principle is a stake.
Accordingly we argue that the principle of nonmaleficence—as it has been traditionally understood—
requires disease, that respect for autonomy usually requires illness, and that the principle of justice
usually requires sickness.

 We conclude that no single concept of disease, no matter how naturalist or normativist, is adequate
to capture on its own the complexity inherent in the health care relationship. However, this way of
looking at those principles provides some further evidence to back up Hofmann’s defence of the triad.
It also sheds some light on the contested status of beneficence, showing that in this principle all three
concepts of disease are involved in a conflictive way, reflecting concerns about the way patient
autonomy has become the hegemonic value in bioethics today (Casado 2009). Thus the triadic
character of the definition of health by the WHO remains a helpful approach to health and disease,
despite other problems.


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Jonathan Charteris-Black (UWE, Bristol, UK)

Metaphor, Gender and Discursive Transformation in Illness.

Drawing on a large corpus of interviews with women and men who had experienced illness, this paper
explores the role of metaphor in contributing to what I have referred to in a gender based study as a
‘transformational discursive style’ for which there is more evidence in the language used by women
experiencing illness (Charteris-Black & Seale (2010). The paper demonstrates the role of metaphors
in contributing towards such a style by showing how they are used by both women and men to create
narratives - although primarily associated with women.

Many women treat illness as an opportunity for self-transformation and change through self-reflection
and interaction. Their active response to illness is indicated linguistically by verbs - so that they
perceive themselves as agents who have control over a range of options rather than as inert entities
to which bad experiences happen. Many women are therefore proactive physically and
psychologically in their response to illness. It is suggested that this mental predisposition conceives
illness as an opportunity for action – rather than dwelling on its causes – and discursively represents
illness as a source of learning and self-reflection. Charteris-Black and Seale (2010) interpret this
strategy as inherently purposeful and relate it to women’s socialisation as primary carers.

Frank (1995) identifies four different narrative types as a response to illness: the restitution narrative,
the chaos narrative, the quest narrative and testimony. In this paper I will illustrate how metaphor is
employed in restitution and chaos narratives by both genders. The restitution narrative is
characterised by a contrast between life before and life after successful treatment – with images of
the enjoyment of pastimes such as sport and gardening. The emphasis in the restitution narrative is
on the control offered by expertise and medicine that contributes to restitution and this contrasts with
the chaos narrative which is characterised by both the individual’s lack of control and medicine’s
inability to control the disease (Frank 1995: 115). I will also refer to some types of metaphor that were
only identified in the language used by one gender – for example mechanistic metaphors such as
‘support mechanism’ were only found in the language used by men.

By combining the concept of a transformational discursive style with the analysis of metaphor in
narrative, I hope to contribute to our understanding of a possible therapeutic role for language and its
relationship to gender. This is significant because it is a role that is assumed by cognitive therapies
that are based in a belief in that there is a reciprocal and interdependent relationship between the
systems of thought and language. However these therapies often avoid taking into account the
gender differences that medical sociology has identified in responses to illness, for example in the
reluctance of men to seek diagnosis.


Florence Chiew (University of New South Wales, Australia)

Brain plasticity and autopoiesis: The role of experience in learning

The growth of research areas in cognitive and affective neuroscience has drawn attention to the role
of experience and social interactions in organising brain circuitry. This compelling doctrine of
neuroplasticity works against traditional notions of the brain as a passive recipient of information.
Neural connections, while they are wired in a complex and very precise manner, remain open to
modification through exposure to new experience.

This concept of plasticity can be read in relation to the concept of autopoiesis, or self-production.
Autopoiesis expresses the process of self-renewal in living systems. It is also referred to as biological
autonomy. A living system can be understood in terms of its internal organisation, how it selects and
acquires elements from the environment that will enable it to maintain itself. However, there is a
curious contradiction here, in that autopoiesis is at once what guarantees autonomy yet also
necessitates the living system’s dependence on an environment. In other words, the system is
operationally closed but structurally open to its environment.


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This paper explores the notions of openness and closure in relation to concepts of plasticity and
autopoiesis. It looks at how recent work in the areas of social neuroscience interpret the malleability of
brain structures, and the formative role of the social environment in shaping experience.


Michael J. Clark (King’s College London, UK)

Antagonism between consciousness and healthy psychological functioning in 19th C. British
psychiatry

With few exceptions, twentieth-century systems of psychoanalytic and psychiatric thought have
regarded enhanced self-awareness and progressive self-realisation as essential to the attainment or
recovery of individual mental health. Psychiatric conceptions and classifications of mental disorder
have frequently taken the integrity of the self as their point of departure, while a mature self-
understanding and the pursuit of self-actualisation have been regarded as core values and goals of
psychotherapy. But in later-nineteenth century British psychiatry, almost the reverse was the case
(Clark [1981], [1988]).

Just as physical health or ‘well-being’ was often conceived of as the absence of any conscious
awareness of the body’s normal physical functions, so mental health was thought of in terms of the
absence of self-awareness in the normal processes of thought. Reflex actions, which were perfectly
‘organised’ and performed without the need for any conscious act of will, were regarded as the
paradigm of healthy mental as well as physiological functioning, while consciousness was regarded,
in Henry Maudsley’s words, as an ‘‘interference’’ or ‘‘actual impediment in the [correct] association of
ideas” and a prima facie indication of imperfect adaptation to the individual’s conditions of existence
(Maudsley [1867]). In this view, ‘mental evolution’ consisted in the progressive supersession of states
of ‘subjective’ or self-consciousness by states of ‘objective consciousness’, which were themselves
destined gradually to fade away as the modes of behavioural adaptation which they represented
became more perfectly ‘organised’ as ‘acquired reflex’ or ‘secondarily-automatic’ actions.

Far from being a therapeutic goal, an enhanced self-awareness was thus at best an indication of
some imperfection or inadequacy in the individual’s psychological and behavioural adaptation, and at
worst a symptom of actual mental disorder. This paper will attempt to explain this antagonism
between consciousness and healthy mental functioning in late-nineteenth century British psychiatric
thought, and its relation to contemporary notions of what constituted mental health and illness, and
also to reflect on the process whereby these assumptions came to be superceded by more
humanistic concepts of mental health in the course of the twentieth century.


Rachel Cooper (University of Lancaster, UK)

Distinguishing normal from pathological: the case of mild intellectual disabilities

There are many disorders that fade into normality. Mild depression fades into sadness; alcoholism
into heavy drinking; high blood pressure into normal blood pressure and so on. In this paper I focus
on a specific case – mild intellectual disability – as a way of working through the issues raised by such
disorders. I am interested in people who fall at the lower end of the bell-curve for IQ and whether they
suffer from a pathological condition.

My strategy will be to examine the ways in which the cut-off point for diagnosing intellectual disability
has shifted over time and to seek to explain the changes that have occurred. Using this case, I will
argue that, in the case of “bell-curve” disorders, the cut-off point between normality and disorder shifts
as a result of social and economic factors. It is not the case that we first identify the disorders and
then find the resources to help the disordered. Rather the reverse occurs, and the contours of
disorders are gerrymandered so as to supply a “needy population” that roughly fits the resources
available.




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Ben Curtis (Nottingham University, UK)

Is amputation a permissible treatment for body identity integrity disorder?

Those with body integrity identity disorder (‘BIID’) feel that certain parts of their bodies should not be
there. They feel that their possession of particular (healthy) limbs makes them “over-complete” and
have an acute desire to have the offending limbs removed. The desire is so strong that those with the
condition usually seek out medical amputation. In cases where this is refused, some take matters into
their own hands and attempt self-amputation. Importantly, those with the disorder have no delusional
beliefs about the unwanted limbs. They have no belief that the limbs are not actually theirs. Nor do
they have a belief that the limbs in question are defective.

Until recently the weight of empirical evidence and philosophical argument favoured the conclusion
that it is permissible for a surgeon to accede to a BIID sufferer’s request for amputation. In my
presentation I will argue that the weight has shifted and that, in fact, we ought not to permit
amputation.

Two main sufficient conditions for the permissibility of amputation have been defended:

Amputation on a BIID sufferer P is permitted if:

1. P’s request for amputation is autonomous.
2. There is no other viable treatment available (or forthcoming) for P, and the ongoing harm
experienced by P is likely to be greater than the harm that would result from amputation.

I will argue that although condition 2 was met, it no longer is. And I will argue that condition 1 can
never be met.

Why condition 2 is no longer met:
There have been many competing hypotheses regarding the cause of BIID, but until recently most
took the empirical evidence (or, lack of it) to favour the view that it was a purely psychological
disorder. As it is known that the condition is resilient to psychological treatment, the prospects for the
development of any viable non-amputational treatment seemed bleak. But the situation has changed.
Recent work by McGeoch et al. has confirmed BIID’s status as a neurological disorder, and with this
the development of effective non-amputational treatment has become a significant possibility (e.g.
transcranial magnetic stimulation).

Why condition 1 can never be met:
All BIID sufferers have a first-order desire to have a limb removed. But a request to have a first-order
desire fulfilled is autonomous only if that desire is the expression of the agent’s will. On my view a
first-order desire is only the expression of an agent’s will if the agent autonomously accepts the desire
as his will. But, I will argue, no BIID sufferer who accepts the first-order desire for amputation as his
will does so autonomously. A very rough outline of the argument is this: autonomously accepting a
first-order desire for amputation as one’s will involves (amongst other things) having an autonomous
second-order desire that this first-order desire be present. But no person lacking the underlying
neurological disorder present in BIID has a second-order desire with this content. So, we can infer
that the second-order desires must arise in BIID sufferers as a result of the neurological disorder
itself, and this itself is a reason for thinking that they are not autonomous.


Efrat Dagan and Hadass Goldblatt (University of Haifa, Israel)

The twilight zone between health and sickness: the embodiment of being BRCA1/2 mutation
carriers

Compared to the general population, BRCA1/2 mutation carriers are at 5 and 15 fold of risk to
develop breast and ovarian cancer, respectively. Women diagnosed as BRCA1/2 carriers are
recommended to undergo intensive surveillance and to consider prophylactic modalities. While the
clinical significance of prophylactic oophorectomy and mastectomy is acknowledged and presented


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as part of the genetic counseling encounter, the usage of such preventive management among
BRCA1/2 mutation carriers varies according to their personal perception of health, as well as
prevailing values. This study explored the ways in which asymptomatic women diagnosed with
mutation in BRCA1/2 genes gave meaning to the dialectic between being concurrently healthy and at
high risk for breast and ovarian cancer, vis-à-vis their ways of coping. In other words, we sought to
understand how being a BRCA1/2 mutation carrier is embodied in the meaning a woman ascribes to
health and illness.

Seventeen asymptomatic Israeli women diagnosed as BRCA1/2 mutation carriers participated in the
study. In-depth semi-structured interviews were conducted. Data were analyzed using qualitative-
phenomenological methods.

 The following themes were revealed: (1) Cancer or surgery: the dominant fear. A constant conflict
existed between two threatening conditions, namely, the threat inherent in being a BRCA1/2 carrier
and the fear accompanying the prospect of prophylactic surgery in the absence of clear clinical
findings. (2) Family clock. Personal risk was defined in terms of a timer. Women became acutely
aware of the temporality of life. Their perceptions of the future were colored by typical ambiguity; they
discussed their fear of illness, expressing their hopes to be healthy and present at their families'
significant life events.(3) Knowledge is power. Positive test results were worrying for the women, but
also sharpened their awareness of temporality of life and hazards. Yet, this knowledge provided the
option of acting upon risks to avoid potential illnesses, thus decreasing the sense of a pre-determined
fate and potential feeling of helplessness.(4) Mother's story shapes daughter's construction of
experience. The way in which participants' mothers coped with cancer shaped their own coping
stories, managing a constant dialogue between the two.

Breast and ovarian cancer worry was a major factor in opting for prophylactic oophorectomy. Family
scripts, the hope to be healthy and the wish to live through significant stages in family life may lead to
the choice of prophylactic oophorectomy among asymptomatic BRCA1/2 mutation carriers. Listening
to different voices regarding risk perception and risk reduction modalities may shed light on the
experience of embodiment of being a BRCA1/2 mutation carrier.


Ignaas Devisch (Ghent University, Belgium)

Lifestyle, health and individual responsibility

More than ever, the way we live our lives has become subject to our own decision-making. Our whole
way of living has become the expression of personal lifestyle choices and the result of individual and
voluntary decisions. In many countries the pursuit of a healthy lifestyle has or is expected to become
a criterion in the allocation of healthcare services. One of the crucial questions is what could be the
consequences of this evolution for health care policy for individuals and for society in general? If we
consider the individual as autonomous and regard the way he lives as largely a matter of his own free
choice, would it then not be ‘logical’ to hold the patient personally responsible for making (un)healthy
life style choices, when he tries to obtain insurance or when monitoring entrance to training programs
or healthcare facilities? And if the individual is unwilling to change his risky behavior, could he then
also no longer obtain health care services?

Consequently, there are increasing discussions in healthcare about lifestyle, the autonomy of the
individual and its responsibility for its own health. Lifestyle is also an issue in debates on the ethics of
current health policy and health insurance: private insurance companies increasingly promote the
values of mass sports, fitness and a healthy way of living. In many countries the pursuit of a healthy
lifestyle has or is expected to become a criterion in the allocation of healthcare services. One of the
crucial questions is what could be the consequences of this evolution for health care policy for
individuals and for society in general? A crucial point in this discussion deals with the way we
understand the concept of lifestyle: is it fair to hold obese patients fully responsible for their condition,
because it is simply the result of their lifestyle choices?

Considering the fact that the means for health care are principally limited, what are the ethical and
philosophical options and arguments to distribute these means, given the fact that today, a healthy


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lifestyle is an important factor for health? What are the philosophical and ethical options if this would
be the starting point of future health care? We will illustrate the importance of these questions by
attending to a topical example, obesity. As lifestyle is often a crucial factor in the treatment of obese
patients, it is more than likely that lifestyle will be an issue in current and future policy discussions
about obesity. Some already simply speak about the need to “force them to diet”.


Sophia Efstathiou (University of Southampton, UK)

Lessons from Goldstein’s conception of health

This paper is a philosophical and historical investigation of Kurt Goldstein’s understanding of health in
The Organism (1995 [1935]). Through this investigation the paper outlines three general problems
that face attempts to define ‘health’. These three problems are: 1. Underestimating the specificity of
scientific concepts, 2. Using what seem to be scientific concepts to promote political ideology and 3.
Negotiating individual suffering and freedom.

Kurt Goldstein is a German, holist neurobiologist famous for developing sorting tests, psychological
tests used to establish patients’ ability for abstract thinking. These psychological tests were outcomes
of Goldstein and Adhemar Gelb’s work with brain-injured patients, casualties of the first world war.
Goldstein’s work on aphasia, on how an organism substitutes impaired functions and on how it
perceives its defects have been of special philosophical interest and inspired phenomenologists,
including notably Merleau Ponty’s Phenomenology of Perception (1945) (Harrington 1996).

A first problem that Goldstein’s account of health helps make visible is the conceptual richness of
theories of health, despite the seeming transparency of their vocabulary. Goldstein understands
health as the capacity of an organism to adequately address the demands placed on it by its milieu
(Goldstein 1995, 325). These terms seem to refer to ordinary concepts. But in fact they have
particular interpretations within Goldstein’s work: what counts as an ‘organism’ and its ‘milieu’, what
‘demands’ a milieu can make, and what would be an ‘adequate’ response is illuminated by Goldstein’s
definitions of ordered and catastrophic behaviour and his discussion of particular examples.

Second, the political context when Goldstein writes (or rather dictates) this book is of extra interest.
Goldstein expresses these views while in exile in Amsterdam, after the expulsion of Jewish doctors
from Germany. His work would fall under the rubric of ‘holistic’ biology. Holistic biology offers
metaphors and concepts used as vehicles of transport of Nazi ideology (Harrington 1996, Proctor
1988, 1999). The aim of eugenics was the health of the body of the German Volk, at the expense of
what individuals were thought of as degenerate. Though Goldstein applies his understanding of health
to individuals, a slippage and generalization of his results as concerning groups of people would lend
his ideas to the Nazi ideology and legitimate its claims (See [A] for examples of propaganda).

The third problem shown through Goldstein’s work is fixing an ongoing negotiation between individual
suffering and freedom. Goldstein says that medical practice can ensure ‘health’ in two ways: 1)
eradicate the damage, 2) rearrange the milieu of the organism to an environment adequate to the new
condition, if the damage cannot be eradicated. Milieu rearrangements include medication,
hospitalization, diet, renouncing/entering certain human relations. Such medical action “requires an
encroachment on the freedom” (Goldstein 1995, 341) of the patient. In effect a choice between loss of
freedom or suffering must be made. Fixing a definition of ‘health’ as some particular balance point
between suffering and freedom could neglect the dynamic and personal nature of these issues.


Arantza Etxeberria, Cristian Saborido & Antonio Casado (University of the Basque Country,
Spain)

Biological function and the theoretical analysis of health and disease

The common naturalists versus normativists debate on the concepts of health and disease has been
lately rephrased in terms of objectivists, for whom they involve “empirical judgments about human
physiology” versus contructionists, who “deny that these processes can be identified independently of


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human values”. In addition to this, Murphy (2008) introduces a further distinction, to each of them,
between a conservative and a revisionist form, depending on whether they accept a methodology
based on conceptual analysis (considering that our folk concept of illness is correct) or not (thus
maintaining that concepts of health and disease require a theoretical scientific understanding).
According to authors like Schwartz (2007) approaches based on conceptual analysis are rather
limited.

However, not all biological fields or traditions share the same theoretical views about what life or an
organism is. In fact it is very difficult to agree that there is a single “paradigm” in Biology, where many
fields seem to be considerably reviewing their views. Our aim in this paper is to start considering that
different notions of life and organisms exist nowadays in current biology; and from that to take into
account that the concept of biological function varies in each of them, and, consequently, the notions
of health and disease will vary according to the biological perspective adopted.

There have been different criticisms to notions of disease as malfunctions understood in an
evolutionary way: this view implies that conditions will be judged as diseases according to a
normativity established statistically by the goals of survival and reproduction (according to Boorse´s
dispositional notion of biological function, which is the most usual in the philosophy of biomedical
sciences) or by the past action of natural selection (as in the case of etiological approaches of
biological function, such as Wright´s). However, alternative concepts of function have been proposed
in the literature. We intend to consider a notion of function based on an organizational perspective
(such as Mossio et al 2008) to evaluate possible alternative conceptions of disease. In this case the
normativity that allows saying that a disease is a malfunction depends on the biological organization
and can be also understood in causal/mechanistic terms.

In this sense, our proposal intends to evaluate possible theoretical ways of understanding the
objectivity of judgements of health and disease, on the basis of a holistic approach to living
organization that is coherent with current perspectives in biology (such as Systems Biology or Evo-
devo).


Hannah Farrimond (University of Exeter, UK)

Conceptualizing new non-invasive prenatal diagnosis technologies

New and emerging technologies in health-care are often framed in terms of their clinical potential for
individuals and their adoption driven by perceived clinical need. This has particularly been the case
with ‘invasive’ prenatal tests such as amniocentesis or chorionic villus sampling. Consideration of their
potential social impact, in terms of the understandings of pathology, disability and health in pregnancy
that they represent, arguably followed their introduction rather than preceded it. A new generation of
genetic diagnostic tests are being developed, known collectively as ‘non-invasive prenatal diagnosis’
(NIPD). These do not invade the amniotic cavity but distinguish maternal and fetal DNA from blood
drawn from the arm of the pregnant woman.

This paper examines the conceptualization of ‘non-invasive prenatal diagnosis’ as a medical-scientific
category with potentially profound social implications. Firstly, it is an umbrella term used to denote a
collection of technologies with very different potential applications and socio-ethical consequences.
Secondly, the biomedical categorization of such diagnostic tests as ‘non-invasive’ can be
interrogated. Finally, NIPD only requires a blood test, so represents considerable commercial
opportunity as an online or private service.

Conceptualising NIPD in terms of clinical use may mean that many of the ethical issues stemming
from commercialization (e.g. widespread paternity or sex determination testing) receive less focus.
How NIPD is conceptualized as a set of technologies functions to frame the debate, and practices,
surrounding its potential introduction. It also amplifies questions about how society constructs health,
illness and disability in relation to the prenatal period.




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Elizabeth Fistein (University of Cambridge, UK)

The theory and practice of compulsory psychiatric treatment

In England and Wales, the regulation of compulsory treatment for mental disorder has recently
revised by the Mental Health Act 2007. The Act is the controversial product of a decade of debate
between politicians, service user and carer organisations, mental health professionals and lawyers.
This paper is based upon on descriptions of a series of clinical assessments conducted during the
year following implementation of the Act, during which decisions were made about whether or not to
detain somebody in hospital.

The analysis of these data suggests that the changes to the regulatory framework have, as yet, had
little impact on day-to-day practice. Despite being accorded broad powers to detain under the law,
practitioners tend to limit their use of compulsion to cases involving (i) particular types of psychiatric
phenomena (psychosis and suicidal thoughts in the context of depression); (ii) impaired decisional
capacity, and (iii) situations where they agree that compulsory treatment is likely, on balance, to
improve the well-being of the person being treated. However, despite the use of detention being
limited by law to cases where it is necessary in the interests of the health or safety of the person
concerned or for the protection of others, concepts from other areas of law and policy such as overall
best interests and vulnerability to exploitation are being discussed during assessments and made
relevant to decisions to detain people under the Mental Health Act.

Theoretical work on the justifications for limiting autonomy rights has also engaged with ideas such as
rationality, reciprocity and the risk of harm to both self and others. The second part of this paper
considers what the practice of compulsory treatment described in the first part might reveal about the
moral intuitions of a group of people with relevant experience. Then, drawing on Rawls’ method of
reflective equilibrium, the theoretical treatment of these concepts is compared with practice in order to
address the question ‘What can philosophers, politicians and psychiatrists learn about autonomy from
each other?’


Dariusz Galasinski (University of Wolverhampton, UK)

Diagnostic criteria and psychiatrists’ accounts of clinical significance

In this paper, I am interested in how the criterion of clinical significance in the diagnostic criteria of
mental illness is translated into psychiatric practice. More particularly, I am concerned with how
psychiatrists account for the threshold between health and depression, with what constitutes
caseness in depression. A review of the literature suggests that despite the inclusion of the criteria of
clinical significance into the DSM and clinical recognisability into the ICD, they are practically
unexplored and un-understood, particularly in reference to clinical practice.

The paper is based on a convenience sample of 39 semi-structured on experiences of depression, its
onset and end, with specialist psychiatrists working in hospitals and walk-in clinics in southern Poland.
Methodologically, the paper is anchored in the constructionist view of discourse underpinned by the
assumptions of critically oriented discourse analysis. I assume that social reality is constructed
through and within language and that every language use designed to represent reality necessarily
entails decisions as to which aspects of that reality to include, and decisions as to how to arrange
them. And so, this paper is about how psychiatrists talk about diseases they diagnose, the decision
process in which they are engaged in and the discursive resources they avail themselves of in such
accounts.

I shall show that while the informants constructed depression in medical terms, symptoms, rather than
experiences, the onset of depression meant a sudden appearance of the diagnostic criteria in their full
intensity, all at the same time. There were no accounts of any process or borderline experiences –
depression invariably appeared as if out of thin air. This perspective was reinforced by the certainty
with which it was stated. The world of depression in psychiatrists’ stories is simple and unproblematic,
with the ever-certain clinician simply stating what seems to be obvious for everybody to see.



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Interestingly, the certainty disappeared when the informants were asked specifically about the
threshold between health and illness. The responses consisted of a number of strategies either
evading the question or, alternatively, undermining it and its usefulness. Clinical significance, it
seems, is not part of any psychiatric discourse of depression.

I shall make two points on potential clinical consequences of these findings. First, psychiatrists’
discourses lack discursive resources with which to deal with patients with atypical presentation of the
illness or indeed at the borderline between health and illness. Second, and more general, the firm
anchoring of the accounts in the discourses of diagnostic manuals leaves out the possibility of
attending to the patient’s suffering.


Adam Geraghty (University of Southampton, UK)

Reconceptualising transitions from illness to health: applying a contextual model to self-help
therapy

With the rapid growth in access to the internet, self-help therapy is increasingly being seen as a viable
way of improving population health, both psychological and physical. Despite initial results appearing
promising, it will be argued that the application of a medical model of treatment, where disorder is
conceptualised as the result of specific faults within in a specific system, may be holding back the
potential and reach of self-directed therapy. Furthermore, it will be suggested that a consideration of
placebo theory and what is known about contextual effects in medicine, will lead to a much richer
understanding of self-help therapy and novel approaches to some of the key challenges it faces.
After many years of research it is still unclear what causes significant improvements in psychological
health following psychotherapy. There is fierce ongoing debate within the face-to-face psychotherapy
literature regarding how best to conceptualise the process of change from illness to health and
formulate treatment. Support for the medical model indicates therapeutic approaches that target
specific faults (such as particular dysfunctional thoughts or behaviours in Cognitive Behavioural
Therapy, CBT). Support for the contextual model serves to acknowledge the primary role of engaging
with the process and the context of treatment, thus a number of different approaches are seen as
being effective.

This debate has yet to be had within the self-help literature, and interventions to date have been
situated within a medical model of treatment. Yet there are problems. When self-help is delivered
without monitoring, dropout levels can reach up to 99%. Consistently high dropout may be an
indicator of a rejection of this approach. Applying a contextual model of change to self-help therapy
allows for the removal of constraints surrounding the core therapeutic content to be delivered. Content
can be varied substantially, so long as key contextual factors remain present. Research will be
presented demonstrating the benefits of using a contextual approach in self-help therapy. Three
studies will be described showing that a simple gratitude technique (keeping a gratitude diary) can be
as effective as cognitive behavioural therapy techniques (such as thought monitoring and cognitive
restructuring), and significantly reduce drop-out across a number psychological problems including
body dissatisfaction, anxiety and depression.

Lastly, the results of the presented self-help studies will be used as a basis to explore the nature of
change and improvement in psychological health when individuals’ attempt to self-direct their own
therapy. The concepts of demoralisation, meaning and remoralisation will be discussed as potential
primary change mechanisms.


Élodie Giroux (Lyon III University, France)

In defence of an epidemiological approach to the definition of health and disease

Boorse’s purpose in defining “theoretical health” was to describe the medical concept used in
theoretical medicine, which means, according to him, in physiology. His definition articulates a non-
normative concept of physiological function with a concept of statistical normality. Since the 1960s,


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modern epidemiology, which relies heavily on statistics, has become an important source of
knowledge concerning disease aetiology, and is now considered to be an independent scientific
discipline that participates in the construction of our knowledge about health and disease.

Modern analytical epidemiology with its various population studies has indeed played a major role in
unravelling the complex aetiology of the so-called chronic diseases such as cancer and
cardiovascular diseases, and it has also modified some of our conceptions of the normal and the
pathological as in the paradigmatic case of the definition of hypertension. Epidemiology has paved the
way for a new form of preventive medicine based on a risk-factor approach to disease. It seems that
epidemiology is distinctive in delivering a body of knowledge about states of health that differs from
that obtained in physiology and yet at the same time these two domains appear to be complementary.
What can the epidemiological perspective contribute to our conception of the phenomena of health
and disease? And what does the discipline of epidemiology, which is based on statistics, tell us about
the relevance of Boorse’s Bio-Statistical Theory (BST)?

In this paper I will argue that an epidemiological perspective brings new elements to the discussion
not taken into account by BST which could be relevant to a project of defining health and disease. (1)
At first glance, some findings of modern epidemiology appear to deny the status of disease to some
‘universal diseases’ thereby exposing this approach to one of the major criticisms addressed to BST,
i.e. divergence from common medical usage. Moreover the continuity of most risk factors, i.e. the
absence of a natural threshold between the normal and the pathological, seems to throw doubt upon
the central idea of BST, i.e. the determination of a demarcation line that does not require any value
judgment. (2) On the contrary, some other epidemiological findings could be considered as being
appropriately taken into account by BST.

I will first examine to what extent the distinction between “instrinsic” and “instrumental health” (also
called “positive health”) is relevant to integrating the notion of “risk factor”, but avoiding the slippery
confusion between “disease” and “risk factor for disease”. Secondly, I will analyse whether or not
statistical correlation of risk could be seen as giving a better estimate of the level of “functional
efficiency” than the basic standard laboratory tests which are not, as Boorse himself points out, direct
tests of function but of some quantity correlated with function. (3) Finally, as a result of this analysis of
BST from an epidemiological perspective, I will point out some specific elements derived from
epidemiology which contrast with BST and which could be relevant for defining health and disease.


Sheila Harper (University of Sydney, Australia)

Competing interpretations of the ‘gift’ terminology in organ donation

The rhetoric around organ donation and practice is currently dominated by the discourse of the ‘gift of
life’. Public education and donation promotion programmes focus on imagery and language that frame
the removal of organs and their transplantation in terms that position the practice as a moral ‘good’
with donors reified as modern day heroes and those receiving transplants as the recipients of the
most precious gift that can be given – life itself. Yet, alongside this discourse run practices that are
contentious and arguably immoral, such as the trafficking of organs between developed and less
developed societies. The lack of supply set against the increasing demand for organs in developed
societies, where transplant technology is continually advancing, has also led to research into
xenotransplantation which, if successful, will eventually rely on the production of animals specifically
created to provide human-compatible organs for harvesting – a practice that some argue is
reminiscent of ‘mad science’. Thus, on the one hand organ donation is promoted as a moral
imperative within society, and on the other, the technology has resulted in harvesting practices that
might be deemed to be outside of acceptable moral and ethical standards.

In the context of the individual, popular discourse (as portrayed, for example, in the media) suggests
that organ recipients bear a moral responsibility to live ‘good’, healthy lives in order to not ‘waste’ the
gift they have received, while medical discourse suggests that recipients have a responsibility to
maintain their health in order to optimise the benefits of having undergone significant medical
treatment. Placing such a weight of responsibility on the recipients may, in some cases, lead to
mental health problems such as feelings of guilt and anxiety over the need to living a ‘good’ and

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health life. This is turn may require them to alter their behaviour in order to consider themselves
‘worthy’ recipients of this ‘gift’.

There are, for example, people who have relapsed into drinking alcohol following a liver transplant
and this may lead them to feel that they were not morally worthy to receive the organ; that they had
‘let down’ the person who gifted the organ; and, perhaps, that the organ should have been gifted to
someone else. In cases of live donation (for example, the donation of a kidney) there may be serious
health implications for the healthy donors who undergo surgery (potentially putting their own life at
risk) in order to save the life of another. There are currently stringent guidelines set in place which
govern not only who will receive a transplantation, but also who is eligible to go onto the waiting list in
the first place. It is important to consider how these decisions are made and by whom and how value
and ‘moral worth’ are interpreted and assigned to individuals in need of an organ.

This paper will examine a range of issues raised by organ donation and will consider the practices
and discourses that surround it. In so doing, it will consider differing interpretations and beliefs held by
the medical profession, health professionals, organ donors and their families, organ recipients, the
general public in developed societies (who are the target of organ donation campaigns), organ
‘traffickers’ (including people developing countries where the organs are sourced), the media, and
policy makers.


Dieneke Hubbeling (Wandsworth Crisis and Home Treatment Team, UK)

The role of evolutionary theory in identifying disorders

Doctors are often asked whether somebody is suffering from a ‘genuine’ illness/disease/disorder.
Wakefield developed the description 'harmful dysfunction' to try to limit the number of conditions for
which sufferers could seek (government funded) medical attention and have 'sick role benefits' such
as no obligation to go to work. Dysfunction according to Wakefield is a failure to do what has been
selected for during evolution. Conditions which are harmful but not caused by a dysfunction in
Wakefield's sense are not illnesses.

Wakefield's definition of disorder has numerous practical difficulties for example with frequency
dependent selection and with exaptations; i.e. mechanisms used for other tasks than which they were
originally selected for (such as reading). One fundamental problem is that evolution is backward
looking, while illness judgements are made in the present. One can only state in retrospect that a
certain function has not been selected for. What will be beneficial in future societies is to some extent
unknown and can change. Wakefield's definition of dysfunction therefore has to be rejected, if the aim
is to develop an objective description.

It has been argued that in order to suffer from a disease one has to be unlucky (and it must have
happened outside one's control), it must be a bad thing to have and at least in principle health care
professionals should be able do something about it. Once it is established as a value judgement that
a certain condition is an illness in a paradigm case, health care professionals also have a role in
establishing underlying mechanisms, either biological causes or if that is not possible, specific
descriptions, and afterwards establishing the presence of these specific descriptions or underlying
mechanisms is sufficient for declaring that somebody is ill.

In evolutionary theory a difference is made between proximate and ultimate explanations and in
philosophy there is a roughly similar distinction between functions as described by Cummins, whereby
subsystems are fulfilling different tasks and proper functions as described by Millikan, namely those
activities that have been selected for in ancestors.

In research, in particular in evolutionary psychology, hypotheses about ultimate explanations are used
to study proximate mechanisms. Evolutionary theory does seem to be useful for the generation of
hypotheses, which then need to be tested independently. This usefulness in the context of discovery
is an important argument in favour of evolutionary psychology and a similar argument applies to
psychiatry and medicine in general.



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Therefore, evolutionary theory can be useful in establishing that some condition is a disease but only
in an indirect way. It can potentially be helpful in developing hypotheses about treatment, for
identifying underlying mechanisms and for establishing a prima facie case that the condition is
happening outside the person's control. The role of evolutionary theory is developing hypotheses
which need to be tested at proximate level, if possible.


Margaret Jackson and Peter Leviné (Whitby, UK)

Living with Long Term Illness

Margaret Jackson, GP, and Peter Leviné, UKCP Reg. Psychotherapist, have been facilitating group
work with people suffering from long-term illnesses, during the last four years, in the North Yorkshire
Moors around the sea port of Whitby.

 Through the use of narratives of illness, we have been working directly with the embodied and lived
experiences of the participants’ illnesses, and have been involved in a shared learning experience
which has led to the emergence of some common themes. Examples of such themes are: isolation,
grief and loss in the broadest terms, “lessness”, loss of empathy for the needs of the inner child,
repressed anger leading to depression, unfamiliar weakness leading to shame, and many others.

We have been able to develop a deeper understanding of these identified experiences, in terms of
them being well-intentioned attempts to manage being ill, which have led over time to the
development of counter-productive defences and the loss of contact with healthy inner resources i.e.
well-being. The phenomenological experience of sharing the narratives of illness leads to the
possibility of an emergence of a revised and more authentic narrative which begins to incorporate the
healthy neglected resources and well-being within the individual.

We have been evaluating the impact on individual participants, and are beginning to identify
encouraging evidence of positive outcomes from this research. In this presentation, we will briefly
outline the methodology and structure of the groups, and then present what we have learnt about the
phenomenology of long-term illness, including some preliminary research findings. We will then invite
and facilitate a dialogue around these ideas.


Michelle Jamieson (University of New South Wales, Australia)

Stimulus and response: rethinking the nature of the allergic body

Within immunology, the immune response is typically conceptualised as a cause and effect relation
between two discrete entities: a stimulus and a response (an antigen and an organism). As a
phenomenon, it is interpreted in terms of a linear narrative of infection, in which the physical integrity
of an organism is breached by the penetration of a foreign entity or substance. This perception of the
immune response as an encounter between pre-existing entities, views the complementarity of
stimulus and response as an effect of their meeting.

However, this model does not explain how organism and antigen come to exist in a relation as
different or opposed, and yet biologically correlative and implicated. That is, conventional causal
interpretations of stimulus/response pairings cannot account for how a stimulus comes to be
physiologically provocative for an organism that is already receptive to this specific provocation.

Focusing on allergic reactions, and Clemens von Pirquet’s theory of allergy, this paper examines the
phenomenon of sensitisation: how an organism’s capacity to respond to a stimulus is triggered or
animated in the first instance. Using Pirquet’s work to demonstrate that immunological identity
emerges through its deep ecological contextualisation, I argue that the properties of stimulus and
response (taken to be materially inherent to antigens and organisms) are characteristics of matter that
arise only through lived relation.




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Carolyn Johnston & Mika Kioussis (King’s College London, UK)

Can the role of the ‘patient’ in film provide an understanding of illness?”

Mainstream films (The Doctor, Hable con Ella, The English Patient) provide different perspectives of
the role of the healthcare professional, often idealized or polarized. To what extent can the medium of
film give a realistic insight to the meaning of the patient’s suffering through illness?

Marvin’s Room (1996) depicts the slow dying process (he has “been dying for the past twenty years”)
of the father/grandfather figure with warmth and humour. We see him cared for in his own home by
his loving and dutiful adult daughter. Marvin’s illness ultimately provides the setting for the coming
together of a disjointed family. But Marvin himself has no narrative. Thus the experience of illness is
understood only through those caring for him. Perhaps Hollywood doesn’t want to confront the messy
business of suffering through illness.

In comparison, in the made for TV film WIT (2001) the viewer is spoken to directly by the patient, a
renowned professor of English poetry, diagnosed with terminal ovarian cancer. We follow her ordeal
through experimental treatment of aggressive chemotherapy and are party to her emotional suffering
as she reassesses her life. This makes for uncomfortable viewing and provides some insight into the
nature and depth of suffering of the patient.

Such films allow insight of the experience of illness through the ‘role’ of the patient. Is documentary
account of illness more effective in conceptualising illness and its effects?

Academics such as sociologists Arthur Frank have studied how patients themselves play a ‘role’
during the medical encounter. By extension of this premise, documentary films and patient self-
documented videos will generally be affected by the patient’s awareness of their ‘role’. Documentary
filmmaking and especially life-story videography have three characteristics that invite authentic patient
representation in a way that is difficult in cinema; namely a small crew of one to two people, the
unobtrusiveness of the compact camera set-up, and most importantly, a sense of time. Because of
the low cost of videotape directors can take more time to develop a dialogue with the patients and film
more moments of their lives. This increases the chance of capturing the essence of the individual and
their highly personal experience of a particular illness. Time equals greater access to the patients’
inner monologues––and this translates to the screen.

Filming on affordable cameras also encourages lending the camera to the patient and their carers to
play with, take home, experiment and create with. The artists-in-hospice specialist Rosetta Life
enables patients to participate in individual and group film projects. What the patient offers on video is
less mediated by scripts and shooting concerns inherent to bigger-budget filming. There can be
relaxed sense of play and thus of taking emotional risks, letting the mask of the ‘patient role’ slip to
one side to portray the always surprising experience of still being alive.

This is not to say that documentary is better than film in portraying the patient in illness. Whereas the
small screen is gestural, immediate, intimate––the big screen has the platform, budget and artistry to
take the same basic human themes and articulate them in such a way as to affect the audience on
many levels. The experience of illness portrayed with attention to theme, visuals, emotion and sound
can culminate in a deeply profound experience specific to cinema. This brings us back to the question
of which media––feature film or documentary––is better suited to understanding the concept of illness
and discussing ethical issues in a learning context. The answer is that they are both capable of
illuminating important ethical issues when chosen for the qualities of the individual scenario.

This presentation will include film clips as illustration to address the following questions: What
advantages or limitations does film have in providing insight into illness; does film have a role in
education and training of healthcare professionals; and which format may be more effective -
mainstream film or documentary?




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Susan Kelly (University of Exeter, UK)

Concepts of intervenability in childhood genetic disorders

In the past several years, cases of parents making choices about intervening in the physical
development or psychological health of a child with impairments, in pursuit of that child’s best interest,
have gained public, ethical and political attention. Controversially, such interventions are not clearly
medical and relate to health and well being in broad ways. They also raise questions about the nature
of care and care giving, and responsibility.

In this talk I theorise parental relationships to intervention in childhood disorders, drawing from the
sociologies of genetic knowledge and practices, the body, and of disability. It is based empirically on
extensive interviews with parents of children with genetic conditions or impairments. The primary
thesis of the talk is that a confluence of historic shifts – including intensive applications of techno
science to medicine, globalisation of health and biomedical practices and expectations, and the
politics of disability – is shaping private and public expectations about the malleability, perfectibility,
and ‘intervenability’ of children’s bodies and psyches, with implications for how parental responsibility
is experienced and understood.


Katarina Komenska (University of Prešov, Slovakia)

Nordenfelt’s concept of health in the framework of ethics of social consequences

The contemporary situation in the field of ethics calls for the application of the ethical theories to the
concrete problems of humankind. Ethics of social consequences as one of the non-utilitarian
consequentialist theories has this goal deeply grounded in its basic principles and it tries to find a way
how to apply its ideas to the discussion of life, health, diseases, and health care.

Normativism and its concept of health formulated by Lennart Nordenfelt in the 1993 article Concept of
health and its consequences for health care has become an important pillar of the theoretical
discussion about the quality of life concepts. In this article were clearly stated the basic distinguish
features of Nordenfelt’s concept and despite many criticism and revisions that have been made by
now it is still very interesting and inspiring source for exploring the ethical scope of the problem of
concept of health. Nordenfelt´s holistic theory of health extracts from several classical sources but its
main aim is to create a conception of health and disease that will be based on social relations and
normativism. This paper will stand on the basic arguments of the Nordenfelt’s concept of health which
will be subsequently critically reflected by the non-utilitarian consequentialist ethical theory of the
Ethics of social consequences.

The main goal of this paper will be then to connect and compare common ideas of both standpoints;
e.g. the understanding of the human beings as parts of the society and their participations at the
network of social relations, the idea of men’s goals in the life which is common for both theories, and
referring to the state of health or diseases as some particular feeling in Nordenfelt’s concept of health
that could be found in the Ethics of social consequences in the idea of agent-relative and acceptation
of the role of emotions in the decision making process of moral agent. Lastly, the paper will refer to
the concept of ability to reach ones’ goals according to their health/disease that are always somehow
intertwined with their social status and social life. This social aspect of normativism will be highlighted
as a common feature with the Ethics of social consequences as a socially orientated ethical theory.

Nordenfelt’s concept of health is considered to be a holistic theory. In this way it is providing a
complex definition of human quality of life that comprehends most of the aspects of one’s life.
However, the Nordenfelt’s concept of quality of life lacks one important level of understanding the
health and disease – the level of consequences. Ethics of social consequences as the non-utilitarian
consequentialist theory perceive the life in the society through the consequences of human actions.
As consequences are what connect the theoretical approach of these concepts with the praxis, the
concept of health and disease should surely include them, too.




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Matthias Kiesselbach (Humboldt University & Aachen University, Germany)

What does it mean to call something “normal”?

The concept of normality plays a central role in questions of health and disease. Not only does it
figure prominently in the diagnostic guidelines to many diseases, and not only are a number of
diseases actually defined in terms of it. Claims about normality are also presupposed in talk of
biological functions and dysfunctions (Wachbroit 1994), and the latter is centrally involved in most
standard philosophical treatments of the notion of disease.

At the same time, the concept of normality remains quite nebulous. In particular, while it is often
recognised that attributions of normality are inherently normative (e.g. Davies 2003, Murphy 2008), it
remains unclear just what this means, how normality-claims relate to other kinds of normative claims
(Murphy 2008, §4.3), and – indeed – whether their normativity is a problem. Needless to say, this
lacuna also renders the distinction between “naturalist” and “constructivist” accounts of health and
disease less than fully clear.

In this paper, I seek to dissolve the philosophical worries surrounding the notion of normality with a
simple and – to my knowledge – novel account of its use. The account takes the form of an overview
of a region of discourse rather than a description of a phenomenon, but it avoids the quietism
associated with pure Wittgensteinian reminders of our own language.

The account has two parts. The first is a semantic claim: to describe something as normal is to forge
and display an internal relation in one's own language or idiolect. For example, by saying that a heart
normally pumps blood at this or that rate, one indicates that in one's future mentions of hearts, the
inference to the relevant object's pumping blood at the named rate is licensed, unless an explicit
qualification is added. (A similar story can be told with respect to non-inferential internal relations.)
The relation forged and displayed by an attribution of normality is “internal” in that a seeming breach
by a speaker must prompt a re-interpretation of the speaker (or a treatment of her as irrational – this
can range from locally inconsistent to radically incoherent).

Of course, this first part, taken by itself, prompts the question: but when is an attribution of normality
appropriate? The second part of the account is aimed at answering this question. It contains two basic
theses: Firstly, attributions of normality are displays of linguistic dispositions which interact with one
another in negative (converging) feedback loops. Secondly, a claim about the appropriateness of a
normality-attribution is itself a normality-attribution and hence a display of a linguistic disposition –
even when it is propounded by a theorist (e.g. us). For a first glimpse of the idea, consider, as an
analogy, how attributions of value interact with one another. By saying that a particular paper note is
worth, say, five bread-rolls, I display a range of exchanging-dispositions which both reflect and
influence other currency-users' exchanging dispositions. Our thus interacting value-attributions
typically roughly converge; however, a value-claim is not just a statement about the convergence
point. It is pragmatic tool whose use contributes to making itself appropriate in the sketched way. It is,
as we can also say, a calibration device.

The analogous account of normality-attributions has, I contend, a range of interesting philosophical
consequences. Firstly, it guides us away from Archimedean approaches in the debate on health and
disease, it improves our understanding of the notion of normativity, and it renders the typical
vagueness of normality philosophically less problematic.


Elselijn Kingma (King’s College London, UK)

Concepts of health and disease: defending social constructivism as a combination of
naturalism and normativism

What is health? What is disease? Thirty years of philosophical debate has failed to answer these
questions. Instead the literature has revolved around one single question: are the concepts of health
and disease value-free? Naturalists ardently argue in favour, whilst normativists equally vehemently
oppose. Neither of these approaches has succeeded, however; naturalists fail to make good on their


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promise of providing a fully naturalistic account of disease – and even if they were able to provide
this, the disease concept they discuss is a pure theoretical one, and not applicable to either practice,
ethics or policy. Normativists, on the other hand, fail to unpack the claim that health and disease are
value-laden, and offer analyses that beg the question with respect to applications in policy, ethics and
practice. It is time for a different approach.

In sociology, a firmly held doctrine maintains that health and disease are socially constructed. But this
claim has not been unpacked philosophically. I give a very brief and general characterisation of social
contructivism (loosely following Hacking) as the claim that a social construct is not fixed or inevitable,
but is the contingent result of social and historical processes. I suggest that a social constructivist
approach to health and disease is interesting because, instead of aiming to reduce these concepts to
a definition in terms of either biological function (naturalism) or values (normativism), it probes us to
ask a set of different questions: how did we arrive at our present concepts? How they are embedded
in and shaped by our social practices and institutions? And how will our current actions and decisions
affect them? So rather than concluding that health and disease are social constructs, I want to
present social constructivism as a useful starting point that supports and enables further enquiry.

One way of starting to think in social constructivist terms about health and disease, is by considering
how it relates to previous naturalist and normativist analyses. I demonstrate how social constructivism
can both accommodate and augment these, as well as point out why and how naturalism and
normativism failed; naturalism lacked an account of why we should care about biological dysfunction
– an account which social constructivism can provide – and normativism fell into a viciously circular
definition of disease in terms of treatment, and vice versa – but social constructivism can explain and
unpack this circle. Considering the relation between social constructivism, naturalism and normativism
will also provide some defence against familiar anti-constructivist charges of relativism and anti-
realism.

Finally I mention a disadvantage of social constructivism; it will not generate direct or simple answers
to social and ethical dilemmas. This is because our concepts are interactively embedded in our social
practices and institutions; no analysis of the one can therefore give a direct answer to questions about
the other But since social constructivism can generate more fruitful insights than either naturalism or
normativism alone has provided, I suggest we should pursue this avenue anyway.


David M. Kozishek (Michigan State University, US)

Spirituality and medicine in the 21st Century

This paper will begin with a brief overview of the historical relationship between spirituality and
medicine in the U.S. as it pertains to concepts of health, illness, and disease. I will propose that the
historical ‘splitting off’ of spiritual concerns from the practice of medicine can be traced back to the
work of Richard Cabot, MD, who lived and worked in Massachusetts at the turn of the 20th century.
Cabot—faced with the demands of increasing specialization in medical education and practice, but
wanting to continue to address all aspects of his patients’ lives as physicians before him had done—
instituted separate professions which would offer specialized care for patients’ social environment and
their spiritual/religious lives. The ‘new’ professions of social work and chaplaincy were tasked with
caring for patients beyond their biophysical needs—which included patients’ experiences and
interpretations of health, illness, and disease.

Following this historical overview of the rise of professional chaplaincy in the U.S., I will focus on
contemporary hospital chaplaincy practice. Hospital chaplains are trained to be responsible for any
religious or spiritual concerns that arise in the hospital setting. Physicians who are faced with
patients’ religious or spiritual questions—or at times ‘existential’ questions of meaning and purpose—
will normally refer patients and families to hospital chaplains. I will offer a glimpse of one particular
contemporary practice used in professional hospital chaplaincy; the ‘spiritual assessment’ of patients.
Several common spiritual assessment tools will be presented, as well as one method of documenting
a chaplain’s spiritual assessment of a patient in the patient’s medical record. Along the way, I will
question the extent to which professional chaplaincy has patterned itself on the disease model of



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medicine, and whether such a model leads to a ‘best practice’ in the spiritual ‘assessment’ of patients
and a ‘therapeutic’ response to their spiritual needs.

Recently in the U.S., there has been a growing trend within medical education to teach medical
students how to ‘do’ spiritual assessments of their patients. This trend arises out of an
acknowledgment that spirituality is an important dimension of many patients’ lives, and that spirituality
is intimately involved in how these patients interpret and experience the fact of their health, illness
and/or disease. Surveys indicate that a high percentage of patients would like their physician to
inquire about, and be responsive to, their spiritual lives; some would even like their physicians to pray
with them during their clinical visits. In a desire to provide holistic medicine to treat the entire person
in her body, mind, spirit, and social environment; have we returned to an expectation that our
physicians should be competent in addressing all these aspects of our lives? Have we come full-
circle from the days of Cabot? My presentation will conclude with an invitation to dialogue about
whether—and if so, how—spirituality should be included in the future practice of medicine.


Jon A. Lindstrøm (University of Oslo, Norway)

The true value of illness and disease

In this paper I criticize Fulford’s views on the nature of subjective illness and its relationship to
objective disease. In section 1 will begin by introducing the views of (the early) Boorse and Fulford on
the distinction between “disease” and “illness”. I shall then give a critique of Fulford’s contention that
subjective illness is best analyzed in terms of the Austinian notion of “failure of action”, and further
argue that matters of subjective illness and failures of action both are factual ones. In section 2 I will
discuss the relationship between various types of symptoms and subjective illness/ failures of action.
As I aim to establish, there is no logical relationship between symptomhood and the two other notions.
Among the symptoms of pathology one might find both feelings of wellness and actions that represent
successes, at least when taken on their own terms. In section 3 I shall criticize Fulford’s so-called
“reverse view” of the relationship between illness and disease, which has it that the pathological
status of diseases is derived from the negative value that is attached to resulting experiences of
illness.

As I intend to show, the pathological status of diseases cannot be viewed as a function of either the
phenomenological or the biofunctional or the ethical disvalue that any resulting subjective illness
might have. In fact, I shall argue that not even the ethical disvalue of diseases is a straightforward
function of the ethical disvalue of resulting illnesses. In section 4 I shall ruminate on the implications
that the theoretical discussion in this paper has for medical-psychiatric research. Along with Mike
Jackson, Fulford has urged that psychiatry needs to distinguish between valuable and pathological
forms of psychosis. Certain forms of spiritual experiences may qualify as psychotic according to
standard definitions, yet nonetheless enrich the lives of the persons who go through them. Fulford and
Jackson hold that such “legitimate” forms of psychosis neither should be classified as pathological nor
(involuntarily) treated. I shall grant their premise that certain spiritual/ psychotic experiences may be
both socially legitimate and individually valuable, yet deny that this carries the implication that such
experiences cannot be part of a syndrome with an underlying pathological unity.


Jane Lings (UWE, Bristol, UK)

Motor neurone disease: the experience of illness expressed through song-writing

This paper explores the illness perspective of a man living with motor neurone disease (MND) as he
expressed it through his songs. Ten unique songs, all related to MND, were written and recorded
during a four and half year collaborative music therapy process of over 80 sessions. Song-writing is a
well-researched part of music therapy practice, particularly in palliative care settings (O’Callaghan,
2005; Baker & Wigram, 2005).




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Harry (a pseudonym) was in his 50s when we met at the hospice where I was working as the music
therapist. An African, a scientist and researcher, he had recently moved to the UK from Europe and
was working full time but living by himself, with a slow progressive form of the degenerative muscle
wasting illness, MND. He sustained multiple losses during the relentless disease progression, among
these was being an active musician. He was referred to music therapy after further deterioration had
left him feeling low. He had few positive expectations for music therapy but in the first session
discovered an instrument he could play, opening new possibilities for him. When song-writing was
introduced he had an outlet for the expression of feelings about MND and also realised that he could
still sing.

The possibility of situating a research project within an on-going therapeutic relationship occurred in
the second year of the music therapy, resulting in an exploratory case study. The findings identified
four themes:
     The start of music therapy - he moved from ‘can’t’ to ‘can’, discovering he could play again
     Improvisation – he could forget MND as his mind and body worked together seamlessly while
        playing
     Song-writing – this facilitated the articulation of feelings associated with MND in songs that he
        felt proud of
     The value of the therapeutic context - music therapy brought together physical, emotional and
        psychological aspects, which had an impact on him on many levels.

This paper builds on the findings related to Harry’s experience of song-writing. It focuses on what the
songs communicate and reveal about Harry’s experience of living with illness, rather than his
experience of writing them. It also incorporates songs written since the research. Song-writing was
often linked with an improvisation where the addition of lyrics occurred in the moment, often relating
directly to situations or thoughts that were in Harry’s mind. A chronological examination of the songs
reveals them as ‘milestones’ (his description) on his journey with MND. Themes that emerged in the
songs were: his experience of living his life fully despite MND; his relationship with the illness; his
positive coping strategies; his encouragement and messages to others with the disease; and his
views of death.

All the songs were recorded in sessions with Harry as the singer, and his expression and inflections
allow insight into his feelings. During the presentation of the paper excerpts from songs will be played,
allowing the audience the opportunity to enter this experience of illness in a vivid way.


Andrew McGettigan & Richard Mc Kenny (Central Saint Martins College, UK)

When there are so many ways to do it right, what does it mean when the psychotherapist fails?
Anxiety about expertise in a world of competing accounts

Family and systemic psychotherapy came of age in the USA of the 1950s, defining itself in opposition
to psychoanalysis. It offered a competing, inter-psychic (as opposed to intra-psychic) account of
mind, based largely on Gregory Bateson’s interpretation of cybernetic theory, instituting a different
approach to mental health and well-being. As a consequence, systemic psychotherapy theory largely
ignored the ‘common factors’ research project initiated in the 1930s by Saul Rosenzweig.

In the last 30 years systemic psychotherapists have responded to feminist and ‘post-modern’ critiques
of earlier (structural and strategic) theory and practice, developing a collaborative, ‘non-expert’ stance
towards families and individuals seeking therapy. Anderson and Goolishian argue that their ‘not-
knowing’ position, inspired by philosophical hermeneutics (“the theory and practice of interpretation”),
repositions the therapeutic encounter as a conversation where the therapist’s expertise consists in
deferring ‘knowing’ in order to allow new meanings to emerge.

Rather than a representative of a particular, competing account or even school, systemic
psychotherapists have come to espouse a ‘therapeutic ecumenicalism’. For Larner this therapeutic
stance resonates with psychoanalyst Bion’s ideas on memory and desire. Flaskas, Pocock and others
have argued for a re-engagement with the broader psychoanalytic tradition, seeking a reconciliation of
intra- and inter-psychic accounts of mind. This has led systemic psychotherapists to a converging


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interest in the common factors project. Rosenzweig’s 1936 thought experiment, Some Implicit
Common Factors in Diverse Forms of Psychotherapy, proved to be remarkably prescient. The
relatively minor significance of the particular theoretical model and technique has been supported by
subsequent empirical research (Duncan et al 2010) and the recent emphasis on demonstrating the
evidence base for psychotherapies, as required by bodies such as NICE.

Surveying the recent literature, we suggest that the turn to philosophy to theorise the role of the
practitioner, may be typical of a particular theoretical phase where conflicting accounts of the
conditions treated have been reconciled or reached an impasse. Our focus here is on a particular
case: the recent appeal to Levinas’s account of the encounter with ‘the other’. Larner has argued that
Levinas’s philosophy provides a starting point for the development of an ethical grounding for the
therapeutic relation as an alternative to recent theoretical syncretism, such as Flaskas’s
reconceptualisation of psychoanalytic ideas.

We argue that Larner relies on a partial reading of Levinas’s oeuvre. We draw attention to some of
the difficulties for family therapists in adopting Levinas’s philosophy while maintaining a collaborative,
‘non-expert’ stance. We argue that these tensions and contradictions between systemic
psychotherapy’s current ideals and the actuality of Levinas’s philosophy cannot be resolved.

However, we suggest that the turn to Levinas responds to a practical need for psychotherapists – the
transdisciplinary anxiety engendered in individual practitioners operating in a field where several
research programmes converge. We argue that Larner’s interest in Levinas draws attention once
more to the problems of mastery and possibility of failure in the charged setting of the therapy
session, revealing the ongoing, practical difficulty for psychotherapists of judging what is happening
when things go wrong.


Melanie Newbould (Royal Manchester Children’s Hospital & University of Manchester, UK)

Is there any validity in the concept of a “disorder of sexual differentiation”?

Humans are considered to be male, female or ill. Infants with ambiguous genitalia are regarded as
suffering from a “disorder of sexual differentiation”, though another term for them might be “intersex”.
This general concept covers a wide range of medical states, only some of which are associated with
life threatening medical problems and the genital anatomy itself is not the cause of such problems.

There are legal and social reasons why intersex might be considered a disadvantage to an individual
and this is why the medical model might be considered appropriate. For example, in law in this
country, all people must be male or female; there is no accommodation for those who are intersex.
Even the Gender Recognition Act, 2004, deals with two genders. In most cultures the sexing of
babies at birth is one of the processes facilitating the child’s first entry into the social world. To be
male or female is one of the most fundamental of societal norms. For some parents having an
intersex child is deeply shocking, shameful and difficult to accept; they see their child’s future as
bleak.

From the 1950s onwards, this group of “disorders” was considered a medical and social emergency;
immediate neonatal surgery to normalise genitalia to coincide with the desired sex of upbringing was
considered mandatory, so that the child was not confronted with ambiguity in interactions with family
members and wider society. The model of male and female underlying this philosophy of
management was essentially based on the roles undertaken in heterosexual penetrative sex. Whilst
the treatment of these disorders has undergone reform during the past two decades, it is still common
for parents to consent to early genital and gonadal surgery so that their child becomes a “proper” boy
or girl; this is assumed to be legal and usual – since the child lacks any capacity to consent at this
stage. This treatment and use of the term “disorder” implies that it is still essentially a medical model
that supplies the framework of reference when considering how to care for children with these
conditions, whereas their problems are actually legal and social.

Patient activists now commonly counsel non-intervention since early surgery is permanent and
potentially mutilating. In this model, surgery can be deferred until the child achieves competence to


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consent, so that the intersex person decides if and when medicalisation is appropriate for them, just
as, for example, a transsexual person might do. The general approach taken by patient groups is that
there is a need for education at all levels in society, so that intersex is no longer perceived as a
disorder, but, perhaps, as another aspect of order.

This is a complex issue; though patient activists may regard non-intervention as the ideal, for some
parents with an intersex child this is difficult to accept. Clearly the child has to live in society, with its
legal constraints as it is now and medicalisation is perceived as a tool to make this less traumatic.


Dominic Page (UWE, Bristol, UK)

Conceptualising the relationship between employment and Mental Health; disability, equality
and the discourse of employability

Significant academic work has highlighted the relationship between mental health disabilities and
un/underemployment. However, dominant explanations for such relationships are that mental health
problems automatically result in an incapacity for paid employment. Past research (see Grove et al,
2005) has highlighted a widespread assumption that those with mental health problems do not want
to work, or that paid employment is not realistic. However, conversely it is known that people with
mental health disabilities are freer of symptoms and less prone to relapse if they engage in work. Yet
in reality this has been translated into a medicalised conceptualisation of mental health, with policy
focus in the UK on ‘any’ work, with no reflection on the aspirations, skills and abilities, of individuals,
potentially forcing people into inappropriate employment.

Active Labour Market policy in the UK has been driven by the key approach of ‘work for those who
can, security for those who can’t’, thus dividing people into those who can and those who can’t work,
again underpinned by a medical conceptualisation of mental health. This has been reflected in recent
reform to social welfare and proposed changes outlined by both the Labour and Conservative parties,
as well as the UK governments liberal political philosophy and consistent equal opportunity legislation
(in this case the Disability Discrimination Act). Yet a critique of such medical conceptualisations of
mental health in the Labour Market context is limited. Additionally, if employers maintain these views,
the implication is that rational employers will screen out people with a history of mental health
disabilities and therefore the only possible reason for employing them is essentially charitable.

This has been driven by the dominant social epidemiological approach to the relationship between
work and mental health. This would suggest ‘social causation’ as that the primary explanation for high
levels of unemployment and low paid work experienced by those with mental health problems
resulting in low levels of employability. Poor working conditions ‘cause’ poor mental health and results
in low employment commitment/ motivation. Poor mental health results in an inability to work.

There is significant sociological theory underlying such beliefs, however the research is surprisingly
limited. This paper investigates these assumptions, drawing upon the labour market experiences of
people with mental health disabilities, to explore the relationship between employment,
unemployment, ‘worklessness’, and mental health. Policy discourses of ‘employability’ in the UK have
been previously criticised for being myopic to the impact of labour market and occupation structure
(Bordieu and Passeron, 1970) and the way in which opportunities are framed by an individual’s
mental health is yet to be explored. As Heskath (2003) highlights, within such a discourse the failure
to attain appropriate employment becomes an individual failure. This paper challenges this discourse
in the context of the relationship between employment and mental health. In light of these
discussions, it presents a critique of social welfare reform, in particular reform to Incapacity Benefits
(IB), now Employment Support Allowance and reflects on the potential consequence of these policy
changes for those experiencing mental distress.




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Britta Pelters (University of Bielefeld, Germany)

A constructivist approach to health

In the fields of Public Health and Medicine, a great deal of effort is focused on health promotion and
prevention given the effects of Surveillance Medicine (Armstrong 1995). For the people involved, a
statement like the following one made by the carrier of a BRCA-2-gene mutation could turn out as a
nightmare:
“Interviewer (I): Do you consider this disposition a disease?
Interviewee L: No, what do you mean?
I: Yes, because I asked about genetics and then you came up with diseases
L: Well, it’s for me- yes! that’s a disease for me, you can fall ill of something like that
I: Would you say that you are ill?
L: Me? No!”

In an at-risk situation health can hence become diffuse. This fuzziness is intensified by cross-cultural
comparisons in the field of medical anthropology which refer to the cultural construction of health. In
contrast, health promoting and preventive work is usually guided by the ‘clear-cut’ bio-psycho-social
western understanding of health. This ‘factor-analytic health’ can lead to a control-logic regarding the
three areas soma, psyche and society. It may thus promote the idea that a checklist-resembling
dealing with health demands guaranties personal health and owns a normative dimension which
combines the promise of a good life with the responsibility for personal health and adequate health
efforts. Good health becomes an inevitable performance.

To open up a more creative and individual view on health a shift from a factor-dependent to a
constructivist approach is suggested. This approach is based on the notion that biological,
psychological and social factors are culturally constructed and can only be subjectively meaningful to
an individual. ‘Health as construction’ relates to the labeling-model as well as Foucault’s concept of
governmentality and the thoughts of Judith Butler. Like gender, health is seen as an interactively
constructed and experienced bodily reality which is challenged by life-events. The constructions takes
place in an ongoing interactively mediated labeling praxis that is based on performatively
communicated rules, explanatory models etc. (during education) and needs constant performative
realization in actual social encounters. Performative acts include all the expressions that (re-)produce
and (re-)present identity.

As a driving force, the tension between a subjectively experienced satisfaction and a felt need for
improvement is suggested. Health is a result of personal reflections and a permanently negotiated
status of (dis-)satisfaction which is actively produced and ‘authorized’ by the social environment.
These practices can be called outing and passing and aim at the production of status. The
construction of health is perpetual, creative, subjective and due to a person’s viable and intelligible
abilities. Thus, this concept includes a logic of creativity instead of the factor-model’s control-logic.
Moreover, health becomes a flexible identity-related characteristic with a great potential for change
depending on the actual social context which can lead to a person having different ‘healths’ in
different contexts (which allows a connection of these thoughts to a model of relational autonomy).


Birgit Prodinger (University of Western Ontario, Canada)

Using feminist theory to learn about the daily lives of women with disability

The current health and social sciences research focuses predominantly on certain socially
constructed categories such as gender, disability, ethnicity, and social class and how each of these
categories respectively affects individuals and their health. Research particularly within the health
sciences was used to develop models that are able to predict the prevalence, occurrence and
correlations of these categories from a rather deductive and reductionist research tradition. In using
this approach, the effects of single categories are frequently added together. More recently, critical
health and social sciences researchers point out that the experiences that occur at the interstices of
various social categories beliefs cannot be adequately captured by previous research approaches.
However, ignoring these interstices would mean that the experiences of for instance young mothers

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with chronic diseases such as arthritis would be obscured as each category to which she belongs
would be approached respectively.

Particularly critical feminist theorists argue that it is not sufficient to single out categories and aim to
understand them separately from each other as in the actualities of everyday life – actual places at a
certain point in time in which individuals are located – the social categorical distinctions do not exist.
There is a need for research approaches that go beyond the categorical distinctions and enable to
explicate what is happening in the actualities of the everyday lives of for instance mothers with
arthritis and what is supposed to happen given the socio-political context in which they are embedded
to ensure that social and health care services meet the needs of these women.

In this paper a critical feminist perspective for research will be suggested that affords that researchers
remain sensitive to what happens in the actualities of everyday life of the women and suggests
alternative ways of knowing to support the critical investigation of the social relations and
organizations in which research practices are embedded. Particularly feminist standpoint theorists
underscore that standpoint theory implies accountability to the individuals with whom we as
researchers engage in our research. Starting research at the standpoint of women provides a means
to connect with women as knowing subjects.

In addition, an intersectional feminist praxis provides a means for challenging dominant categories
and disclosing the complexities of relations of ruling as they are engrained in everyday life. In using a
critical feminist approach to research the way how activities and experiences that are situated in the
actualities of everyday life shape knowledge come to the forefront. This approach is powerful for
revealing how interactions within and across different social categories of social life produce
contradictions and tensions in the actualities of individuals’ everyday lives. Hence, the generated
knowledge would be congruent with the life of women with arthritis as it evolves there and would
render possibly more adequate social and health care services provided to mothers with arthritis in
which health management is part of the everyday life but not the whole.


Lubomira Radoilska (University of Cambridge, UK)

Depression, personal autonomy, and decisional capacity

An important function of attributing autonomy to certain self-regarding choices is to protect them from
interference. This paper aims to identify and explore the ways, in which severe depression may
render individual choices unsuitable for protection or non-autonomous in this respect. Central to my
argument will be the split between evaluation and motivation, which depression seems to provoke. In
particular, I will argue that a-historical, value-neutral conceptions of autonomy are unable to account
for this important feature. This may leads to paradoxical decisions to uphold non-autonomous choices
in the name of autonomy. The implications for understanding the nature and scope of decisional
capacity will then be outlined in light of a recent controversy (the Wooltorton case).


Jon Rubin (University of Warwick, UK)

The demarcation problem in the philosophy of mental health

The demarcation problem in the philosophy of mental health is one of those problems that is easy to
state but like many similarly superficially simple problems in philosophy, it has proved remarkably
difficult to resolve. What kind of difference is there between, to take two examples, between sadness,
melancholy and depression on the one hand or between the spiritual experience of hearing god and
the psychopathological experience of hearing voices on the other? Is it a physical difference? A
conceptual one? Factual or evaluative? Biological or social? Some combination of these differences?
Szasz’s response is well known: the demarcation is physical. If there is a lesion, then there is illness.
If there is not, then there is a (moral, social, legal) problem of living, not illness. Neither of the two
examples I gave have proven amenable to this kind of analysis.
It is normally thought that what makes the demarcation problem, a problem, is that mental illness
combines aspects of the factual, that we do find in bodily medicine, and evaluative that we do not. In


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tandem with this fact / value distinction we find a difference of approach in the literature. Reductionist
approaches focus on the biological in contra-distinction to the more socially orientated approaches of
theorists like Nordenfelt. Even with the pragmatist rethinking of the fact/value dualism as a difference
not a different ‘logical geography’ there remains the problem of how to explicitly think fact and value
together, plus the worry that losing this dualism just makes the solution to the demarcation problem
even more obscure.

This paper will be outlining yet another dualism but a dualism that is both methodological and
conceptual, as a way of tackling the demarcation problem. This dualism, of content and context
(which has nothing in common with contextualist approaches in analytic epistemology), has been
developed by Stewart and Cohen (1994; 1997) as a way of retaining all the successes of reductionist
approaches in the natural sciences whilst recognising the real and necessary limits of this approach.
In particular it will be using their concept of complicity to suggest that health (and by extension
therefore both physical and mental illness) is the complicit result of the interaction of the biological
and the psycho-social (itself the complicit interaction of the individual and the social). This is not the
normal approach to the biopsychosocial model; the normal approach (Engel 1981) in fact exemplifies
what Stewart and Cohen call simplexity. This paper will outline the two concepts and methodologies
of simplexity and complicity and show how they can illuminate current debates about the demarcation
problem and the limits of the biopsychosocial model.


Tristana Martin Rubio (Concordia University, Canada)

Rethinking concepts of health in terms of lived space

This paper will bring studies of phenomenological notions of spatiality in closer dialogue with
qualitative experiences of health. In doing so, health is rethought in terms of a form of animating the
world – rather than a physiological state of being – that is shaped by registering the proximity and
distance of our objects and our relations with other people. That is, health and being healthy is not
something discerned by reading ‘objective’ cues on the body, but recognized in the qualitative
character of our experience – specifically, in our way of bodily inhabiting lived space. Accordingly,
experiences of health (and equally of unhealthy) are dependent on our lived bodies taking shape
through tending towards things and other people available to it within a proximate horizon of
possibilities.

On this basis, I argue that ‘health’ involves registering these proximate relations as welcoming and
supportive of our ability to seamlessly engage with others and our shared surroundings in a diversity
of situations. To experience ‘unhealth,’ in turn, involves experiencing these proximate spatial relations
as a set of circumstances in which we can no longer carry out our activities and as a result
experiencing space as curtailing and impeding our ability to participate with the shared environment.

I will engage and work through this formulation of health by developing a phenomenological account
of “bodily space” based on Merleau-Ponty’s notion of the ‘spatial level’ as it is developed in the
Phenomenology of Perception. This level will serve a two-fold function: first, to describe the body’s
unique ‘gearing’ into the world and second, to account for body-specific emergent norms that function
to provide us with a sense of regularity integral to supplying our lives with meaningful, continuous
identity; and, by extension, map out the existential possibilities of well-being in the world. To be
oriented in space by this mediating “level” describes how we are turned towards certain objects and
other people that serve as anchoring points in helping us ‘find our bearings’ in our shared
environment.

In experiences of existential wellbeing, this entails experiencing space as opening up spheres of
viable action that appear to conform to the demands of the body. In contrast, experiences of
‘unhealth’ can place this experience of well-being into jeopardy by subordinating the body to the
exigencies of the immediate situation and as a result challenge ‘bodily space’ by compromising our
ability to participate in everyday life.

I conclude with an account of lived space that gestures towards an ethics of health. If lived space can
support or impede our ability to relate to our objects, our projects and to other people then it makes a


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difference to our overall existential wellbeing precisely whether we are oriented in one way rather than
another. Crucially, I will argue that the shared environment – specifically, the demands placed on us
by attitudinal and social practices – can act as a compensatory resource to help facilitate experiences
of existential well being so long as these practices continue to keep open our ability to engage with
the environment.


Philippe Sanchez (Catholic University of Lille, France & Catholic University of Louvain,
Belgium)

Can we avoid medical concepts in an account of disability?

The debate between the medical model of disability and the social model of disability has been
contributing to frame a new understanding of disablement and its consequences, and of the place of
medicine within the social structures conditioning the various disabilities.

The medical model of disability is an account of disability focusing on impairment and the way people
live with it. Disability is accounted for in terms of lack, imperfection, or pathological anomaly. As a
consequence, the disabled person becomes responsible for his/her social rehabilitation.
But the Disability Rights Movement has been protesting against this account of disability, arguing that
impaired people are not essentially disabled. Society call them so. People with disabilities are
disabled because they cannot find fitting means within their social environment. Moreover society is
not always ready to welcome the vulnerabilities of people who are seen as less competitive or less
fast than others.

With the medical model of disability, the compensation is empowered by medicine, especially by the
physicians of rehabilitation, but not only. As regards mental or psychic disablement, the rehabilitation
is provided by the psychiatrist. But this model is particularly stigmatizing for disabled people.
Therefore, an account focusing on the social circumstances of disability makes it possible to reduce
the symbolic power of the physician as well as to define and take care of disability. The disabilities
being understood in another way, medicine becomes an element for a double movement of
adaptation: the disabled person tries to adapt to society, and society tends to adapt the structures to
the different physical, mental or emotional configurations of disabled people.

The change of international classification of disability, in 2001 by the World Health Organization,
emphasizes that medicine is not the only source of explanation and solution for disability. The ICFDH
takes some environmental determinations of disability into account. The ICFDH addresses specific
features into account so as to understand the various disabilities: firstly the body functions, secondly
the body structures, thirdly the possible activities and participation of disabled people, fourthly the
environmental factors. Thus, the medical account is a criterion allowing the understanding of disability
among some other benchmarks.

In my paper, I show why the ICFDH replaces the medicine in a more humble place as regards the
compensation of disability, which does not reduce its importance. I should show why its account,
influenced by the social model of disability, is important as regards for public policies for disabled
people. It is neither the same political symbol nor the same practical implementation which subsidizes
the medical care for disabled people, or makes public buildings accessible.

I will also make connections between the concepts of medical compensation and social
compensation, in order to show that they are not exclusive. They are indeed connected to implement
some effective public policies for disabled people. Even though the medical model seems more
stigmatizing, the social model does not escape any criticism. To understand the links between
society, politics, medicine and disability, the account of stigmatization has to be underlined.




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Maartje Schermer (Erasmus University, The Netherlands)

Concepts of health and disease and the medicalisation of ageing

Ageing always used to be seen as a normal physiological process, as well as a normal social
process. People get old and they die – that’s life. Lately, however, some authors have questioned
whether ageing and death should really be seen as normal processes. For example, Izak &
Westendorp state: ‘ a similar process is causing ageing and disease in the latter part of life.
Therefore, in our opinion, normal ageing cannot be separated from pathological processes causing
disease later in life. As a consequence, we think that making a distinction between normal ageing and
pathological ageing should be avoided’(5) So, according to some, ageing and old age ought to be
seen as diseases that should be prevented and treated if possible. This idea even inspired a new
branch of medicine called anti-ageing medicine. While some welcome this shifting perspective, others
consider it to be an undesirable medicalisation of ageing and old age.

Scientific and biotechnological developments are important factors that contribute to the
medicalisation of ageing. With the insights that we gain in the mechanisms underlying both ageing
and various diseases, and with the new technological opportunities to diagnose and treat them,
classifications of disease change, and notions of disease, health and ageing themselves change.
Currently, most theories on the concept of disease appear to understand disease as an entity.
However, genomics and other technologies are bringing the process character of disease to our
attention. Research in genomics and biomarkers, it has been argued, contribute to a cascade model
of disease. This implies that the question of when – at what moment in time - a disease starts and
ends, is becoming more difficult to answer. The more we know about the start of disease processes
early in life, it appears, the more states will become ‘disease’. Ageing may in this sense become a
disease.

I will argue that this view of ageing as disease is at odds with the common sense view that ageing is
part of a normal course of life, and this difference in perception accounts for the allegations of
‘medicalization’ of ageing and old age. However, I will argue, the two notions of normality used here
are different; the one is a social normality, the other a biological one. This difference corresponds to
the conceptual difference between disease and sickness.

I will further explore whether using the conceptual triad disease-illness-sickness is helpful in
answering the question of whether ageing should be understood as a disease, and the question of
how we should understand and value the medicalisation of ageing and old age.


Naomi Schreuer, Dalia Sachs& Sara Rosenblum (University of Haifa, Israel)

Participation in leisure activities: differences between children with and without disability

One of the recent indicators of function, health and well being is participation in leisure activities,
driven by internal motivation, and involving freedom of choice and control. Typical children spend 70%
of their average week engaged in sleeping, in personal care, and in school activities, leaving 30% of
their time as discretionary. Their leisure or play activities provide them opportunities for enjoyment,
relaxation, recreation, and goal achievement. Moreover, leisure is of central importance for building
children’s competence and self-determination, as well as for social and personality development.
Nevertheless, there is lacuna in knowledge and measures to examine children’s performance and
participation in leisure activities, gathered mostly qualitatively (Hackett, 2003; King et al., 2007).
Based on the development of a new measure of children leisure activities, the Children’s Leisure
Assessment Scale (CLASS) (Rosenblum, Sachs, & Schreuer, 2010), the current study aimed to
examine whether there are differences in engagement in leisure activities between children with and
without disability.

A stratified snowball sample of 213 children without disability was recruited and was compared to 71
children with motor and sensory disability. Both groups consisted of half male and females, aged 13 +
3, including diverse cultures.



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The children with disabilities participated in the "closing the digital gap", project that took place in
northern part of Israel, and the measure was administered prior to their participation in the project.
The majority of the children with disability were integrated in the regular educational system, and a
quarter of them study in special education schools.

The research was approved by the ethical committees of the Ministry of Education and University of
Haifa. Once a consent form signed by participants and their gradients/parents. The Children’s Leisure
Assessment Scale (CLASS), contains 40 leisure activities measured by four dimensions: Variety
(which activities); Frequency (how often); Sociability (with whom); and Preference (how much he/she
likes the activity). In addition two open questions asked regarding desired activities or other activities
to address multicultural activities and others not mentioned.

Results of ANOVA show significant differences between children with and without disability for variety
of activities (F (1, 223) =18.21; p<.001 2=.06), in the frequency (F (1, 223) =490.38; p<.001 2=.64)
and in sociability (F (1, 223) =9.35; p<.001 2=.03) of their engagement in leisure activities.
Nevertheless, significant difference between boys ands girls was found only in their preferences (F
(1,223) = 8.77 p<.001 2= .03). Differences were also found between the groups in the four types of
activities: instrumental indoor activities, outdoor activities, self-enrichment activities, and games and
sports activities. Differences were also found by applying interaction with gender and age, which lead
to apply regression analysis for demographic variables in order to predict engagement in variety of
leisure activities. For children with disability – age and gender predicted participation in variety of
activities. As for children without disability – gender, nationality and place of residence (urban or rural)
were significant predictors.

Participation in leisure activities as a health measure will be discussed, as well as consequences of
results to community-based intervention programs.


Sean Sinclair (ARL Health, UK)

Does public opinion research show that we conceive of functionally impaired states as lower
value states?

When we research how the public values various health states, we find that non-functionally impaired
states are preferred to functionally impaired states. Healthcare funders use such research to guide
their decisions about whether to fund treatments that produce such health states. This could mean
that, say, a life-extending treatment for a disease that produces functional impairment is less likely to
get funding than a life-extending treatment for a disease that doesn’t, because its cost-effectiveness is
deemed to be lower.

The aim of this paper is to question whether we need to understand the public opinion research as
indicating that the value of a functionally impaired health state is lower than that of a non-impaired
state. The relevance for our concepts of health is shown by the theory of values based medicine: our
concepts of health states have evaluative components.

Many people with functional impairments would argue that placing an unqualified low value on
functionally impaired health states fails to recognise that the quality of life of functionally impaired
people often matches that of non-impaired people - as long as quality of life is understood in terms of
subjective states like contentment, satisfaction etc. They are supported by surveys that show that
following an accident or illness which causes functional impairment, within a few months people's
subjective contentment often reverts to what it was before.

However, against this, funders will point to their own surveys, showing that despite the above fact, the
public places a low value on impaired states. Furthermore, such surveys are likely to produce similar
results when you ask the functionally impaired. In other words, although the subjective state of
functionally impaired respondents matches what their subjective state would be without the
impairment, the functionally impaired would still prefer to be without their impairment. (I suggest this
would continue to be true even if society did everything practicable to become more inclusive towards
the functionally impaired).


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In light of their survey results, how can healthcare funders legitimise a change in policy?

One seemingly obvious solution is for funders to research people's subjective states of contentment in
a given health state, rather than their expressed preferences for being in that state. There are three
issues with this. First, it seems to me to be inconsistent with a more general point about our rights to
healthcare. In principle it seems that if my prognosis and cost of treatment are the same as another
patient's, I should have the same entitlement to healthcare as that patient, regardless of my state of
contentment following treatment. My subjective states do not influence my entitlement to treatment
one iota. Second, death is amongst the lowest value states and this method of valuing treatment
outcomes would not be able to explain why death is such a poor outcome. A similar point applies to
explaining the disvalue of Alzheimer's, vegetative states, states of depression and other mental
conditions where it's difficult to say whether people are in a given subjective state. Third, if the value
of a health state is determined by the subjective contentment of those in that state, this would not
explain why we fund preventative programmes to reduce the prevalence of functional impairments.

A better answer is to stop conceptualising the role of research as eliciting preferences for health
states on the assumption that those preferences directly indicate the value of those health states.
Instead, we should conceive the value of a health state as determined by our ability to satisfy our
desires in that state. The preference-satisfying ability of someone who is functionally impaired may be
as high as that of someone who is not: they can satisfy most of their desires. The explanation is that
the desires of someone functionally impaired are different from what they would have been otherwise.

So we should understand the purpose of public opinion research as being to understand the extent to
which health states are associated with preference-satisfying ability. Research into the public's degree
of preference for a given health state may often be a reasonably good indicator of this, which is why it
has seemed plausible for healthcare funding to be guided by such research. To elaborate on this: our
desires are many and various, as are the ways of satisfying them, so maybe researching people's
preferences for a state is the best way to understand whether they could satisfy their desires in that
state. However in certain cases of functional impairment, it's probably difficult for someone who's not
functionally impaired to judge the extent to which someone functionally impaired can satisfy their
desires. The non-impaired see that many of their *current* preferences would be frustrated in an
impaired state and they disvalue the impaired state in consequence. They don't make allowance for
the fact their preferences would change. That puts them in an epistemically weak position to evaluate
the impaired state.

Having said that, perhaps the value of a functionally impaired health state is *also* partly determined
by the fact that the *current* desires of non-functionally impaired people would be frustrated if they
became functionally impaired. There are three reasons I suggest this. First, we need to explain why it
makes sense to spend money on preventative programmes. This would be difficult to explain if an
impaired state is as good as a non-impaired state in all respects. Second, we can't discount the views
of the non-impaired in deciding healthcare resource allocation, and I suggest such respondents will
always disvalue an impaired state because of its potential for frustrating the desires which those non-
impaired respondents have in their non-impaired state. I suggest this would be so even if the non-
impaired were shown that functionally impaired people can fulfil the (different) desires they have in
their impaired state. We can't help taking account of our current desires. Third, death is amongst the
lowest value states. We can't explain the disvalue of death in terms of a lack of preference-satisfying
ability of people in that state: it's not such a problem to lack preference satisfying ability if you haven't
got preferences. A similar point applies to the other conditions involving attenuated or distorted
desires mentioned above.

I conclude that the value of a health state consists of our ability to satisfy our desires in that state. But
the relevant desires in determining the value of a functionally impaired state are both the desires we
have/would have in that state, as well as the desires we have/would have in a non-impaired state.

This conclusion offers hope of two theoretical benefits and a third, more practical benefit. First, on the
theoretical side, an enquiry into what we value in healthcare outcomes can give us insight into our
health-related concepts. The theoreticians of values based medicine have taught us that whole rafts
of medical terms are partly evaluative. So an account of exactly what we value about various health


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states offers hope of further insight into the terms we apply to such states. Second, there are potential
lessons for ethical theory, regarding what we owe each other in healthcare. Maybe we don't owe each
other anything in the way of preference satisfaction. Maybe we owe each other some degree of
preference-satisfying ability. Third, on the practical side, an improved understanding of the value of
health states could guide changes to the protocols for public opinion research to ensure the research
produces intuitively more valid results.


William E. Stempsey (College of the Holy Cross, US)

Health: did the World Health Organization get it (approximately) right?

The World Health Organization (WHO) definition of health as “a state of complete physical, mental
and social well-being” may be one of the most universally criticized definitions of all time. Over thirty-
five years ago, Daniel Callahan feared that his critiques of the definition might be seen as “beating a
dead horse” but reports of the horse’s death, like the reports of Mark Twain’s death, may be
exaggerated. In this paper I shall argue that the WHO actually got the definition approximately right.
In doing so I shall endorse a holistic concept of health.

Perhaps the most prominent criticism of the WHO definition focuses on its tendency to define all sorts
of social problems as health problems. Another is that it makes the medical profession responsible for
human happiness and wellbeing; this places too many demands on the profession and at the same
time grants the profession too much power and authority in all sorts of social issues. These are valid
concerns but I suggest that such critiques are overstated and are blind to some significant virtues of
the definition.

First, looking at the WHO definition in its context suggests that the WHO never intended such broad
responsibilities or power for health professionals. In addition, no other narrower conception of health
has ever succeeded in strictly delineating what jobs belong to which sorts of professionals.

Second, the broad scope of the definition and its focus on wellbeing puts forth a worthy ideal.
Complete wellbeing is a goal worth pursuing even if it never will be attained in fact. Conversely, the
definition may reflect the reality of the lack of health more than is usually recognized. As we learn
more about our genetic constitution we are coming to realize that none of us is ever completely
healthy. Third, the more we understand disease, the more we come to realize that we cannot
separate physical, mental, social and even spiritual aspects of the person.

Each of these spheres influences all the others. Lack of wellbeing in one often leads to lack of
wellbeing in another. The WHO definition actually promotes a holistic conception of health. Those in
the field of public health have long realized that health promotion must include attention to social
factors.

Fourth, as Bjorn Hofmann has pointed out, a holistic model of health like the WHO’s is actually
logically equivalent to the medical model of health in that health and disease are contrary, but not
contradictory, terms. That is, one may be neither healthy nor diseased, but not both healthy and
diseased at the same time. Thus the WHO definition accords with the medical model in a way that is
often unrecognized. Finally, I suggest that talk about social health is not merely a metaphorical
application of the notion of physical health but gets at an important aspect of the concept of health in
its focus on wellbeing.


Les Todres & Kate Galvin (University of Bournemouth, UK)

‘Mobility-dwelling’: an existential theory of well-being

This paper is a response to the question: Is health just the absence of disease or does modern
medicine need a more inclusive notion of well-being? We wish to contribute to this debate by defining
well-being in its own right and somewhat independent of either health or illness.


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We offer an existential theory of well-being that is guided by Heidegger’s later writings on
‘homecoming’. We approach the question of what it is about the essence of well-being that makes all
kinds of well-being possible. Consistent with a phenomenological approach, well-being is both a way
of being- in- the- world, as well as a felt sense of what this is like as an experience.

Drawing on Heidegger’s notion of Gegnet (abiding expanse), we characterise the deepest possibility
of existential well-being as ‘mobility-dwelling’. This term indicates both the ‘adventure’ of being called
into expansive existential possibilities, as well as ‘being-at-home-with’ what has been given. This
deepest possibility of well-being carries with it a feeling of rootedness and flow, peace and possibility.
However, we also consider how the separate notions of existential mobility and existential dwelling as
discrete emphases can be developed to describe multiple variations of well-being possibilities. We
wish to show that this theory of well-being has some interesting and valuable practical applications in
that various kinds of ‘dwelling’ and various kinds of ‘mobility’ are possible as potential resources in our
lives.

We believe that our theory of well-being is needed because of certain ‘blind spots’ in public and
professional discourses regarding the possibility of well-being in life. The theory outlines a view that
does not depend on the eradication of the limits of being human, but on the other hand, does not
forget the multiple levels of possibilities and resources that are available as sources of well-being. In
the future, more and more people will be living with chronicity, and when the notion of cure becomes
less meaningful, what kind of well-being is possible?


Peter D. Toon (Queen Mary University of London, UK)

Boundaries of illness and a narrative of flourishing

There is a general consensus that disease concepts include an evaluative as well as a factual
element, and attempts to provide a value free for these categories have been unsuccessful. In a world
of pluralist values and competing ethical frameworks however divisions between health and illness
often seem to be arbitrary and variable, arise from relativist or emotivist theories of values; or to be
disputed because of differing concepts of the proper role of medicine. Depression is a good example
of this: a decade or so ago there were a number of papers criticising general practitioners for
“missing” or failing to treat depression; more recently there have been criticisms that normal human
unhappiness is being medicalised and treated inappropriately with drugs.

Not all problems about the boundaries of illness arise from its evaluative component; there is an
intrinsic fuzziness in disease concepts, as in many biological classifications, But many of these
problems I would argue are a consequence of the fragmentation of moral discourse described by
Alasdair Macintyre in “After Virtue”. Arguments about the appropriateness of medical treatment ( not
only depression, but also ADHD,) and also arguments about public provision of services ( cosmetic
surgery, fertility treatment) and about responsibility and illness as an excusing factor ( alcoholism and
drug addiction) all have their roots in differing world views which come from people using different
moral frameworks.

Macintyre argues that the solution to this problem lies in a coherent theory of a flourishing narrative
and a life which cultivates the virtues and the “internal goods” of practices. Without claiming to be a
latter-day St Benedict, I will try explore to what extent we can resolve some of these problems about
the disease concept and the limits of illness by looking at them in the context of an account of a
flourishing human narrative.

This will be explored particularly in relation to depression, which is an excellent index case, but also l
applying the concepts developed to the other representative examples of problems about illness
definition mentioned above. A consequence of this understanding of illness classification is that the
role of the clinician as an interpreter, someone who helps people construct a narrative of flourishing
for their life, is much more central to medical practice than has conventionally been recognised.




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John Troyer (University of Bath, UK)

Patenting the deathless body

Human life ends in death, either by accident or the unfolding of time. Over the last fifty years,
however, human death (and the physical act of dying) has been transformed into a kind of illness. In
short, death has become pathologized to such an extent that everything must be done and at all costs
to prevent it from occurring. The logical conclusion to this pathologization process goes beyond the
concept of an ageless body wherein physical aging is significantly slowed, while lifespan is
exponentially increased to construct another kind of impossible body. The ageless body is
increasingly being replaced by an emergent discourse which advocates the deathless body, or a
human form-of-life in which dying is eradicated. These arguments can be located in both
Transhumanist literature about the future human as well as in Palliative Care arguments against
assisted suicide. While both of these groups are extremely disparate in their philosophies, one
overriding premise remains true: no individual should ever just choose to die. Be that death
biologically determined or a suicide.

Yet the concept of the deathless body will only succeed if it is understood as an alternative to the
postmortem pathologization of biological life, i.e., that death itself is a curable disease. Indeed, the
twenty-first century nation-state so vigorously regulates the mortality of its populations that Michel
Foucault’s 1976 observation that the modern sovereign no longer simply takes lives but makes live
and lets die becomes even more relevant. The constant use of new technologies (as both machines
and concepts) affecting human death brings me to the following question: What happens when
human death is patented? This patent on death would become the concluding logical step in the
ongoing political struggle for the total control of human mortality. Death, it would seem, is a force of
nature not unlike gravity, and because of this an initial patent on “death” might automatically fail given
the rules governing such applications.

To legitimately patent death would then mean more than simply inventing some new device or
machine. What such a patent entails is finding a method, a concept, some combination of practical
and theoretical technologies that turn death into a man-made invention. Turning death into a humanly
invented process would necessarily mean possessing both the powers to prevent it from happening,
as is the case with current bio-medical technology, and reversing previously irreversible death through
this patented invention. Death would truly become an illness that demanded curing. In sum, death
would need to become entirely un-natural and explicitly pathologized for the logic of the deathless
body to succeed. As Raymond Williams suggests in his book The Politics of Modernism: “The
moment of any new technology is a moment of choice” (134). Death for the human, I argue, is quickly
becoming one of those choices with little forethought or consideration as to what living without dying
means for the concept of life.


Somogy Varga (University of Osnabrück, Germany & University of Copenhagen, Denmark)

The philosophical underpinnings of the cognitive-behavioural approach to mental illness

After the “cognitive revolution” has repositioned mental states as central to mental illness, the
Cognitive-Behavioural Model (CBT) has become something like the predominant paradigm in
understanding and treating a wide range of conditions. When examining national recommendations
(fx UK), there is little doubt that CBT is promoted as the therapy of choice and the preferred first line
treatment for depression, eating disorders, panic disorder and obsessive-compulsive disorder. The
main aim of my talk is to revise the theoretical foundations of CBT.

I will proceed in two steps. First, I will argue that CBT is in part based on misleading philosophical
assumptions. These are:
Emotional experiences and feelings are caused by beliefs
Beliefs involve representational states




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Second, drawing on new developments in the philosophy and neuroscience of emotions, I will attempt
to construct more coherent theoretical framework for CBT and work out some of the practical
consequences.


Andrew Warsop (University of Essex & King’s College London, UK)

Uncanniness and the Ill Body

Is the notion of uncanniness useful in our understanding of the body in illness? The idea originates in
literature and it has been employed in different ways, for example by Freud (psychoanalysis) and
Heidegger (fundamental ontology). So how is it relevant in the context of illness? In sympathy with
contemporary writers such as Svenaeus and Toombs, I indicate how modern medicine with its
naturalistic, third person orientation tends to ignore the uncanniness of the lived body suffered by ill
patients.

This fundamental difference in perspective may lead patients to distrust scientific medicine and its
practitioners. Both writers point out how uncanniness is revealed when one’s everyday manipulation
of objects is disrupted in illness, and, whilst I concur with this insight, I do not think that it is the body-
as-broken-tool that is revealed when one’s body is encountered uncannily. Bodily uncanniness is
manifest independently of such descriptions which tend to reinforce the traditional, internalistic
perspectives they seek to oppose. In addition, they tend to miss the relevant Stimmung. If we focus
on the phenomenon of illness we see how minor bodily changes that bear little relation to our capacity
to manipulate objects, can nevertheless bring a horrible privation of our seamless, healthy being-in-
the-world. The discovery of a small lump, for example, can indicate the onset of serious illness and
propel one into existential crisis.

Drawing on the work of Heidegger and Freud, I argue that a therapeutically informative understanding
of uncanniness is one that recognizes how our finitude is encountered in a peculiarly bodily way. We
are the corpses we will become. The relevant dynamic sense of bodily uncanniness does not merely
refer to the ‘alien-ness’ of the body (Toombs) or the disruption of meaning patterns (Svenaeus)- it
reveals the existential seriousness of illness. In uncanniness we see how we have evaded or
repressed the way our bodies will become inert, life-less objects. If medical practitioners were to be
more attuned to understanding the uncanniness of embodiment in this way, it may enable them to
appreciate the existential burden of illness and assist them in working to achieve therapeutic goals
with their patients.


James D. E. Watson (King’s College London, UK)

Concepts of death as a disease: a phenomenological critique

Following the work of Philippe Ariès (The Hour of Our Death, 1991) and other conceptual histories of
death, as well as, no doubt, often our own personal experiences, it will be argued that contemporary
perceptions of death have been heavily shaped and altered by the growing medicalization of the
ageing process. David Lamb (1985) puts the idea well, “in the West death is increasingly seen as an
enemy to be combated. This is a consequence of the influence of scientific medicine and is a
relatively recent phenomenon. Whereas physicians formerly accepted death as natural but strove to
eliminate disease, in recent years the very idea of death has come to resemble a disease to be
eliminated” (Death, Brain Death and Ethics, 1).

Consequently, ageing is increasingly no longer perceived as a natural process, something intrinsically
tied up with our own mortality and death no longer as a natural endpoint. Instead, the ageing process
is seen as a disease, or perhaps more accurately a collection of various diseases, that can be cured
or prevented (either at present or at some future point) and so should be combated by medical
technology, or indeed by any other means necessary.

Such a view has found a natural conclusion within a passage of John Harris’ Enhancing Evolution
(2007). Contemplating the issues surrounding death and life-extension, Harris makes the important

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consideration that “it is one thing to ask the question, should we make people immortal? And answer
in the negative, and quite another to ask whether we should make people immune to particular
diseases”. However, he then goes on to insist, that, “we are, then, unlikely ever to face the question,
should we make people immortal-yes or no? We may rather be called upon to decide whether we
should treat a particular disease when we know an effective treatment will extend life span[…]It might
then be appropriate to think of immortality as the side effect of treating or preventing a whole range of
diseases” (2007, 64).

Harris argues that we need never actually address the problem over death, but rather, just continue to
treat disease; the elimination of death is then merely the by-product of the prevention and cure of
disease. Implicit within this claim is that death can be reduced to little more than the medical
symptoms that constitute it. Yet on reflection, such an argument seems entirely wrong-headed.
Harris, however unintentionally, conflates two quite different issues. It does not necessarily follow
from the premise that we should treat disease and promote good health that, therefore, we need not
confront the issue over our own deaths. There is a fundamental, and quite glaring, logical gap
between the two.

Rather, it seems entirely consistent to hold that, whilst we should always strive to prevent illness,
disease and any other hindrance to good health, we may still accept the importance of our own
mortality. Indeed, it would seem quite normal for one to want to live a life of perfect health, yet still
accept that we may hope for a life that has “a structure in time that reaches a natural and appropriate
termination” (M. Nussbaum, The Therapy of Desire, 203). This is a tension at the heart of the human
condition. We may after all ultimately decide, as Harris acknowledges himself, that mortality may be
preferable to immortality.

It is this phenomenological character of the knowledge of our own mortality, what it is like to be
mortal, which ensures that our concept of death can never be adequately captured by appeal merely
to the various ailments which often do constitute it. Knowledge of our own mortality is a deeply
personal experience, one which often shapes our outlook. Thus, despite the growing medicalization of
the ageing process, it will be argued that death is, and will always remain, more than the medical
symptoms that constitute it. In short, ageing and death necessarily are much more than the sum of its
parts.


Molly van der Weij (Bath Spa University, UK)

Beyond words - envisioning experiences of people’s pain
Design of a communication tool to help people to express experiences of pain and illness

Often human experience is ineffable - beyond words. Pain is almost impossible to express through
words and there is much we do not know about it. Visual language can complement the verbal and
help explain more about pain. Visual language is giving form to meaning, making things concrete,
something to reflect upon, to communicate about. It enables us to look at experience as separate
from one self, placing something from the inside into the external world, making the experience
something that can be examined and shared.

The project’s research is based on knowledge from the disciplines of art and design and psychology.
The project’s goal is to develop a generic visual communication tool that helps patients to express
their pain experience to carers, doctors and other social relations.

The discipline of psychology suggests that being able to communicate one’s experiences helps to
make sense of being ill. When it is difficult for people to express this psychologists suggest that they
are likely to get stuck in the suffering of their illness, which then controls their life: it is not unusual for
people suffering from serious illness or chronic pain to lose their job, partner or friends and not least
their confidence and self-respect.

From the perspectives of art and design, the elements of what makes an experience, such as feelings
and emotions, are known forces. To look at what they consist of, in a sensory and analytical way, is



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often a source for exploration, creation and gaining understanding of experience as function for
expression.

To learn first-hand about the patients’ experience fieldwork was done with patients at the Pain Clinic,
Royal United Hospital in Bath; data was collected by using qualitative research methods such as
interviews, observations and visual notations. Visual notations are structured ways (schematic and/or
single focused) of making different aspects of the experience visible, and are made by the interviewer:
the patients don’t make anything themselves. It is a process of co-construction that results in basic
content used for analysis and further development.

From a first evaluation with clinical staff at the Pain Clinic we can conclude that this innovative
approach brings forward valuable aspects that otherwise would have gone unnoticed and
unarticulated. There are no other examples of this approach of capturing meaning within published
pain literature. Proposals for further research and development towards the realisation of a generic
communication tool are being encouraged, as this will contribute to a wider understanding of what
pain is and to the improvement of a healthcare service.

The presentation will focus on describing both the process of developing the communication tool with
pain sufferers and the latest draft of the tool itself. Examples of the work will be used to illustrate the
process.


Diana White (University of Maine at Fort Kent, US)

Creating illness: confounding population risk with the health of individuals

Individuals who take medication believe that they are being treated for a discrete disease, or to
prevent a particular disease. This influences their self-definitions in various ways. Labelling someone
“at risk” has an effect, perhaps salubrious, perhaps not. Labelling and treating are not benign
activities. Labelling and treating are rooted in judgments, which those who are labelled and treated try
to comprehend based on their own understandings of health and illness. Given the unequal nature of
the power relationship between care providers and patients, this whole enterprise becomes an ethical
concern.

Correlative studies have created a long list of factors associated with disease syndromes. Alcohol,
dietary sugar, saturated fat, lack of exercise, and smoking are labeled as risk factors for a variety of
diseases, including diabetes and heart disease. Rarely, there are studies which demonstrate
causative, rather than correlative connection. The gold standard for causative connection is the
relationship between tobacco smoking and lung disease, heart disease, and cancer.

Of concern is the ever-growing list of “risk factors” which have only correlative relationships to
disease. The studies which produce the lists of risk factors are misunderstood by the general public.
Many people assume causation where only correlation exists. This misunderstanding is exploited by
pharmaceutical companies, which market drugs for the prevention of disease in individuals based on
correlative and/or weakly causative population findings.

Statins, drugs which lower blood cholesterol, are now taken by 40 million US adults. The literature
suggests that 40 million more people should take statins because they are at risk for heart disease or
stroke. The US Food and Drug Administration has recently approved statins for the treatment of
inflammation (as measured by a blood test) in people without elevated blood cholesterol. The study
which informed this government decision was paid for by a pharmaceutical firm.

The principles undergirding the identification and treatment of risk factors depend on the sense that
there is general benefit to society to reduce the burden of disease and to reduce the numbers of
premature deaths. Individuals benefit, if they have diseases which respond to treatment. However, the
treatment of people without disease based on correlative evidence puts at least some of those people
at risk for medication side effects.




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Is a person with identified risk factors on preventive medication ill? Is a person who refuses to take
the medication healthy, on her own terms? Does refusal to take medication when there are risk
factors present constitute non-compliance? Do we require compliance of individuals to achieve the
societal good of reduced disease burden?


A.N. Williams (Northampton General Hospital, UK)

Taking for a Walk ‘A Dog with a Tail at Both Ends’

This paper will be concerning the ethical questions raised by my play “A Dog with a Tail at Both Ends”
which has been performed at conferences and elsewhere by ARTE, the Birmingham University
Medical Student Drama Society. My play was inspired by my work within paediatric palliative care. I
am a full time NHS consultant community paediatrician with a specialist interest in paediatric
neurodisability, a PhD medical historian and playwright.

In my play, the parents of Jo, a dying teenage girl with Down syndrome and mental retardation, are
controversially offered a highly experimental medical treatment. This not only saves Jo’s life but
improves her cognition to the point where she gains the facilities to make an informed opinion and
give consent when previously that would not have been possible, adding a further level of ethical
difficulty.

Having grown in such knowledge and understanding, and after experiencing the world as a “normal”
person Jo decides that she wishes to stop her treatment and to revert to as she was before.
There has been a successful treatment for some forms of mental retardation available for over 100
years but all generally are applied very soon after birth. Jo, by deciding to stop her treatment
challenges not only the medical model, but the social construct of disability as a human condition no
one would preferably choose. Jo has to be allowed her choice, and clearly it is up to each individual
member of the audience to decide if it is the right one for her or indeed, if they were to be in her
position, for themselves.

This play provides a truly meaningful leading role for an actor with disabilities, who drives the drama
forward and is central to it. It asks fundamental questions about what limits, if any, should be placed
upon medical science's endeavours to 'cure disability' and whether this should be undertaken at the
point of the patient’s death. Lastly, it emphasizes the rights of those whom Society choosing to define
as disabled and therefore worthy to be subjected to this type of treatment, to say ‘No’!


Dana Wilson-Kovacs (University of Exeter, UK)

Health and illness in regenerative medicine: a case study from stem cell clinical research

In recent years stem cell research has established itself as a field of scientific inquiry that has raised
much controversy being both conceived as a greatly promising endeavour in the treatment of
degenerative diseases and simultaneously subjected to ethical debates, especially regarding the use
of embryonic stem cells. Taking as a case study clinical research using adult (autologous/patient’s
own) stem cells for cardiac repair this paper examines the ways in which ideas of health, illness and
repair of the damaged tissue are elaborated in practitioners’ accounts. Stem cell research on heart
repair represents one of the few areas where clinical trials with autologous (patient’s own) stem cells
for those with myocardial infarction or chronic heart failure have been carried out in Brazil, Europe,
the Far East and the US since 2001.

Based on trial outcomes, the Task Force of the European Society of Cardiology concluded that the
practice is safe and that the clinical investigation into autologous stem cells cardiac repair should
proceed with double blind, large randomised clinical trials. However, such trials report that the
administered therapies have had either neutral effects or modest benefits, and in light of this evidence
the intervention remains contested. My argument highlights the tensions between the understanding




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of stem cells as instrumental to new models of regeneration and cure, and the practical
accomplishment of stem cell clinical research in terms of its organisation, delivery and results.


Angela Woods (Durham University, UK)

Narrative: a key concept in health and illness?

In recent years, the role assigned to narrative in representing, conceptualising and researching the
experience of health and illness has widened in scope and significance. Publications chronicling first
person accounts of illness have proliferated, whether in the established literary forms of book-length
autopathographies and so-called “misery memoirs,” or through the new spaces opened up by patient-
advocacy groups. This public appetite, which also encompasses autobiographical works by medical
practitioners, has led critics such as Terrence Holt (2004) to conclude that the “dominant mode of
medical discourse” is now “the confessional.” The growing prominence of illness narratives has also
been accompanied by a surge in scholarly interest in the “first person perspective,” a perspective held
to be either missing from or devalued in the way medicine is practiced in the West. Perhaps the
strongest articulation of this view is made by Rita Charon in her book Narrative Medicine: Honoring
the Stories of Illness (2008). Charon famously calls for “narrative competence” to be a central part of
clinical practice, suggesting that intensive narrative training will offer medicine the “singularity,
humility, accountability [and] empathy” it so sorely lacks.

How can we best understand medicine’s “narrative turn”?

My point of departure in addressing this question is philosopher Galen Strawson’s critique of what he
terms narrative orthodoxy (2004). Strawson rejects the idea that there is an essential relationship
between narrative and selfhood, and argues against the attendant normative, ethical claim that “a
richly Narrative outlook is essential to a well-lived life, to true or full personhood.” While he does not
focus specifically on medicine or on first person accounts of illness, Strawson’s provocative analysis
of the hegemonic power of storytelling, and of the destructive potential of the injunction to narrate,
prompts a range of questions: Why has narrative become a renewed focus of medical attention?
What are the strengths and limitations of adopting a narrative approach to understanding the
subjective experience of illness? What model(s) of the self are produced and policed through
narrative? Does illness complicate the implied association between “the good self” and “the narrating
self”? What lies “beyond narrative”? Exploring these questions in the specific context of mental ill-
health, this paper contributes to a broader critical inquiry into how narrative functions as a key concept
in contemporary accounts of health and illness.


Sam Wren-Lewis (University of Leeds, UK)

A sentimentalist account of disease (and illness, and health)

In her paper ‘Disease’ Cooper argues that by disease we mean a condition that it is (1) a bad thing to
have, (2) such that we consider the afflicted person to have been unlucky, and (3) can potentially be
medically treated (Cooper, 2002). All three criteria are necessary for a condition to be classified as a
disease. Cooper further states that the reasons behind the necessity of each condition are as follows:
(1) is needed to distinguish the biologically different from the diseased; (2) is needed to distinguish
disease from conditions that are unpleasant but normal; and (3) is needed to distinguish diseases
from other types of misfortune (such as economic problems or legal problems).

Although I agree with Cooper’s reasons behind each of her three conditions, I do not agree with the
necessity of her second condition, namely that we consider the afflicted person to have been unlucky.
Cooper thinks that we need this condition (or something like it) in order to distinguish disease from
states/conditions that are unpleasant but normal. I think that an account of disease entails this kind of
distinction, but I do not think the distinction that Cooper states is necessary under a sentimentalist
account of what sorts of bodily or mental states/conditions are bad things to have.




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I outline a sentimentalist account of disease, whereby a bodily or mental state/condition is a disease
iff it is (a) a bad thing to have, and (b) potentially medically treatable. A bodily or mental
state/condition is a bad thing to have, under a sentimentalist theory of prudential value, if it has the
power to cause negative affective responses in us (negative emotions, moods etc.). Such an account
entails an essential distinction between normal and abnormal states/conditions, in that our negative
affects reflect disruptions to well-functioning, which are non-routine. In this sense, the kinds of
states/conditions that we are negatively affectively disposed towards are the ones that constitute
abnormal dysfunction.

There are two further advantages of a sentimentalist account of disease. First, it reconciles an
account of dysfunction with our (affective) appraisals of the kinds of states/conditions that are bad for
us. Second, despite being subjectivist, it does not rely on (inaccurate) individual self-reports for the
discovery and treatment of diseases; rather, it can appeal to more objective (behavioural and
physiological) measures of our affective states.

I end the paper by suggesting that such a sentimentalist theory of prudential value can provide us with
an adequate account of health as well as disease. The account of disease outlined above can be
viewed as the aspects of ill-being (that is, disruptions to our well-being) that can be potentially
medically treated (or ‘medicalised’). We can look at health as not just the absence of disease but the
presence of something more; a positive state/condition. In this sense, health can be viewed as the
aspects of well-being that can be potentially medically treated. I show how the flexibility of such an
account has tremendous explanatory power and highlights the potential of medical practices to treat
various aspects of well-being.


Justyna Ziółkowska (University of Warsaw, Poland)

Constructions of depressive illness in psychiatric interviews

The aim of this paper is to present the view of depressive illness as it is constructed in doctors'
questions posed during the initial psychiatric interview.

The data upon which the paper is based comes from 16 initial psychiatric interviews with patients with
a preliminary diagnosis of the depressive episode (ICD-10, F32). The interviews were recorded by the
doctors in three psychiatric hospitals in Poland. They were the initial conversations between doctors
and their patients immediately after admission. The researcher had no influence on their structure,
form, or content. The mean duration of the recorded interviews was 33 minutes, ranging from 21 to 51
minutes and there were no significant differences in interview duration at different sites.

Methodologically, the study is anchored in a constructionist view of discourse, and the analysis of the
data was based on the systemic-functional linguistic of M. A. K. Halliday, as applied to the study of
discourse by Fairclough (1992). I assume that discourse, as language in use, is a form of social
practice, rather than purely an individual activity or a reflection of situation variables. Discourse is
thus not only socially shaped but also socially constitutive, and representation of reality is selective
and entails decisions as to which aspects of that reality to include and how to arrange them. Thus,
representation becomes ideologically underpinned, and discourse becomes an essential practice
through which acceptable and intelligible way of understanding the world, rules of practical conduct
and moral behaviour are maintained.

I shall demonstrate that in the recorded interviews the doctors used lexical labels and grammatical
forms characteristic of the ICD-10 criteria; they objectified the patients’ behavior and used
professional terms which can be easily found in the diagnostic criteria of the ICD-10. Thus,
depression appears in their questions as a stable set of patients' traits or states. Consequently, the
doctors' questions - constructed in terms of the diagnostic criteria - do not allow changeability of the
patients' self or reaching into his/her experiences.

I shall argue that there is a considerable discrepancy between the questioning practices in the corpus
and expectations towards the psychiatrists presented in the psychiatric literature, the ICD-10 does not
aspire to be a handbook of the psychiatric interview, and theorists argue that only an interview during


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in the doctor tends to understand the patient's experiences and problems gives valuable diagnostic
information. Commenting on the roots and consequences of the doctors’ practices, I shall particularly
point out that using the linguistic forms of the ICD-10 criteria allows the doctors to transform
symptoms into signs, giving them thereby an illusion of objectivity, so desired in contemporary
psychiatry.




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