To Make an Army of Illness by Helen Spandler


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Presentation by Helen Spandler at Sociology of Mental Health Study Group symposium: What does sociology need to contribute towards or against the wellbeing agenda? on 10 June 2013.

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To Make an Army of Illness by Helen Spandler

  1. 1. Sociology of Mental Health Study Group Symposium on Well-being 10th June 2013 To Make an Army of Illness Helen Spandler 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 disability‟. 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 case. 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
  2. 2. 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 by illness. 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
  3. 3. context, it might be better for us to suffer a little ill-being (Paul Stenner)  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 assistance  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
  4. 4. „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 2012)  We might say we are engaged in a collective „disavowal‟ of illness /madness 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. Peter Sedgwick 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 support. So the important question from Sedgwick is: Does focus on well-being ensure the social responsibility for health care? Or does it abdicate social responsibility?
  5. 5. Arthur Frank „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 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 lives” (Frank) 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‟.
  6. 6. 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. Conclusion 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. E-mail