Transcript of "To Make an Army of Illness by Helen Spandler"
Sociology of Mental Health Study Group Symposium on Well-being
10th June 2013
To Make an Army of Illness
The origins of this paper were first written a few years ago during a period
of what Art Frank calls „deep illness‟: „a condition that affords the person
little perceived prospect of ever again living a life without some sickness or
I desperately wanted to be „well‟ (whatever that meant) and engaged in a
variety of techniques and programmes aimed at facilitating well-being
(some of which I found helpful, others less so). I was, however,
increasingly uncomfortable with the wider discourse of „well-being‟ that was
gaining currency. My critique here concerns these wider polices and
politics, not specific well-being programmes.
Fortunately, for me, I did regain my health. However, I remain acutely
aware that not everyone does. Therefore, I want to think through the
implications of the well-being agenda for those „left behind‟ if you like. I am
thinking especially of people who have so-called „severe and enduring‟
mental health problems or people with ME/CFS (particularly those often
called the „severely affected‟) - those people who haven‟t „recovered‟, at
least in acceptable ways, and are still suffering. Today I want to:
1. Problematise the well-being agenda
2. Argue that a focus on „Illness‟ is important ethically and politically
3. Draw on the work of Peter Sedgwick and Arthur Frank to make this
First, I need to make clear at the outset that I am not in favor of the term
„mental illness‟, because of its bio-medical connotations (more appropriate
terms might include „madness‟ and „distress‟). However, my point is that
the words themselves matters less than how they function in a particular
socio-economic/ideological context. For these reasons we need to bear in
mind what Jenny Morris (in her important paper Rethinking Disability) has
called the current „inexorable undermining of the welfare state‟.
My argument is that, unlike well-being, illness has ethical and political
„value‟. It represents important contradictions - contradictions that we must
be aware of, and find ways of responding to. Whilst overstating the case, it
is perhaps no wonder that the most radical patients organisation in history
- the Socialist Patients Collective (SPK) in Heidelberg, Germany - called
their treatise „To Make an Army of Illness‟:
“Capitalism creates in the shape of illness its most dangerous
weapon against itself” (SPK 1972; ASYLUM magazine)
The well-being agenda
As we know, welfare policies across Western European are increasingly
focused on promoting „well-being‟. Academic interest in defining,
understanding and measuring well-being has swollen and is now a
recognised scientific endeavour, providing an expanding evidence base of
what damages well-being and what promotes it. There are now many
journals dedicated to the subject.
It is important to be clear that a focus on well-being can have some
positive effects. Carlisle and Hanlon (2008) provide a useful account of
what a focus on well-being can achieve:
Promotes awareness of how certain aspects society threatens
well-being and creates wider health inequalities.
Removes the focus of attention away from narrow concept of
„illness‟ towards much wider conception of a person‟s life,
social context and opportunities
Results in less stigmatizing initiatives
De-centres medical professionals‟ definitions and
constructions of the limitations of one‟s illness
Places lay/patient knowledge and experience at the heart of a
democratic public health movement & may enable people to
assert their own chosen form of self and identity, not defined
There is nothing inherently wrong with well-being (who‟s against wellbeing?). However, I argue that we need to contextualize it in relation to
prevailing social-economic climate in which it is being developed; and the
purpose to which it serves i.e. how it functions:
It is no coincidence that „well-being‟ initiatives often increase as
employment conditions deteriorate and inequalities widen. In this
context, it might be better for us to suffer a little ill-being (Paul
Rather than being a strategy of „de-medicalisation‟ – well-being
initiatives (like social inclusion, personalisation and other strategies
of „modernising‟ health care) are more about reducing state
responsibility for health care and making individuals responsible for
their own health.
In a context of austerity, well-being initiatives can operate as a
substitute for progressive programmes for collective public
The lived experience of illness is always „culturally shaped‟. This
means that there are particular ways of „being ill‟ that are deemed
appropriate or inappropriate in society at different times (Arthur
Kleinman 1988). Talcott Parsons‟ „sick role‟ - the culturally
sanctioned way of being ill - gets created anew. This means that
certain ways of „being ill‟ are privileged over others. As such, it reproduces categories of the „deserving‟ and „undeserving‟ sick.
Therefore, different socio-economic contexts position the „ill‟ within a
particular web of constraints, responsibilities and moralities (which
fits our dominant values).
Therefore, in the current neo-liberal context, a focus on well-being can:
Contribute to an abdication of social responsibility to alleviate
suffering and distress.
Privilege/Valorise „independence‟ (I use the term valorisation in the
Marxist sense of economic exchange value i.e. a particular form of
„independence‟ based on paid work & playing taxes). Where does
this leave the right not to work? (Glover and Piggott 2012)
Increase fear/castigation of so-called „dependency‟ („sick role‟)
Creation of new subjugated others e.g. the campaigning ill, those
who are seen to be „stuck‟ in a sick role, „dependent‟ on services and
benefits, limited by their „illness beliefs‟, „treatment resistant‟ etc
Examples – ME/CFS psychiatric lobby – Mainstream psychiatry in
the UK sees ME/CFS as being perpetuated by „mistaken beliefs‟ and
„sick role behavior‟ & membership of self- help groups. Access to
sickness benefits seen as “prolonging illness” (see PACE report).
Consensus about so-called „fairness‟, not „equality‟. This relates to
an important/prevailing „structure of feeling‟ (Raymond Williams) in
society - the „resentment of the other‟ - the sick, needy, poor etc who
are seen as not „paying their way‟ (Paul Hoggett and colleagues
We might say we are engaged in a collective „disavowal‟ of illness
Therefore, instead of unhelpful terms like „well-being‟, and clumsy terms
like „well-ness‟, perhaps we still need to keep our focus on illness. When
using the notion of „illness‟ here – I am referring to the different (but, I
argue, complementary) ways they are utilised by Arthur Frank and Peter
Sedgwick. I will outline some of their ideas in turn.
In his ground breaking text Psychopoltics Sedgwick argued that:
“The future belongs to illness” (Sedgwick 1982)
This provocative claim was part of Sedgwick‟s attempt to wrestle
radical mental health movements away from nihilistic abandonment
of psychiatric suffering and public forms of welfare provision.
He made a plea for the „unified concept of illness‟
This enables us to highlight personal suffering, illuminate the social
conditions which contribute to, and potentially alleviate, suffering,
It calls attention to the importance of society‟s collective and
organized response to human suffering.
And enables us to make specific demands for service provision and
So the important question from Sedgwick is: Does focus on well-being
ensure the social responsibility for health care? Or does it abdicate social
„However much suffering there is and however much we want to
avoid being ill, we may need illness. Expressing that need, finding
the terms in which to celebrate illness, is the task that lies ahead‟
(Frank 2002: 15)
The lived experience of „illness‟ affords us the occasion to witness
and learn from the profoundly human experience of suffering.
„being sick...in itself affords no value‟ but it represents a „dangerous
opportunity‟ „a moment at which change is possible…to live a life on
the basis of one‟s difference‟ (Frank)
Illness is a difference with „moral potential‟. It can become an ethical
political „project‟ (in the Sartrean sense)
Not only does illness have the potential to change a person‟s own
experience, values and priorities, but it also has potential to
challenge damaging wider social conditions and values.
For example, illness may relate to a more general economic
culture/cycle of production and consumption – living an
„unsustainable and disconnected way‟ from ourselves, each other
and the environment. e.g. “the healthy can begin to value illness by
doubting the standard of productivity by which they measure their
Asserting the „value of illness‟ is not easy. Society marginalises and
stigmatizes madness, disease and disability, the ill person is, „like the
slave…always „other‟ to a society that defines health as its norm‟(Frank).
However, this does not necessarily result in the „spoiled identities‟ of
Goffman‟s important critique. This is no longer the only „story in town‟,
precisely because of the important work of psychiatric survivors/
movements. Rather than seeing people as „dependent‟ or adopting a „sick
role‟, we can see them as creating „new systems of honor‟ through shared
individual illness narratives and collective action by the „similarly afflicted‟.
These alternative „systems of honor‟ are especially notable in the mental
health system survivors‟ movement. „New claims‟ regarding, for example,
the experience of hearing voices, self-harm, paranoia and mania. These
alternative understandings are made „available to others‟ through groups
and networks. This is what Frank calls „Survivorship as craft‟.
So the important question from Frank is: Are these „moral possibilities‟
nurtured by focus on „well-being‟? Or are the spaces available for the ill
and their allies shrinking?
Sedgwick and Frank‟s concepts of illness are helpful, together. Whilst
Sedgwick developed concepts which help us to protect and develop forms
of public assistance for those ill and suffering, Frank was concerned with
„the lived experience of illness‟ itself and what it can teach us.
There are serious problems with an uncritical focus on well-being in
modern society. It might be not too much of an exaggeration to say that in
the current context (and that is an important proviso):
Well-being (has the tendency to) individualise and moralise
Illness (has the potential to) politicize and collectivise
Dr. Helen Spandler
Reader in Mental Health, School of Social Work, University of Central
Lancashire, Preston, UK.