Sociology and survivor research: an introduction
Sociology and survivor research: an introduction
Abstract and Keywords
This chapter provides a context and background for the book as a whole. It first describes its origins in the British Library seminar series, a milestone in survivor research. It outlines the historical relationship between sociology and survivors’ voices and the development of key theories about mental health service users and survivors. It considers how they have both advanced and undermined survivors’ voices, demonstrating that historically, survivors’ voices are almost silent in sociology, with survivors rarely speaking for themselves and producing their own theories of madness and distress. As survivor researchers reclaim their voices through survivor research, they challenge the sociological tradition of understanding and representing worlds through the lens of detached academic interpretation. The British Library seminar series, and this book, demonstrate sociology's engagement with survivors’ voices and with participatory and survivor controlled research. Sociology and survivor research are engaging on an equal footing.
Watershed moments in survivor research
Survivor research is a relatively new form of service user activism. It formalises the desire of psychiatric system users and survivors to generate our own knowledge about our experiences. In its short history – little more than 20 years – survivor research has had a number of watershed moments. These include the publication of the directly challenging Have we got views for you (Beeforth et al, 1994) and the development of the first national survivor-controlled research programmes, User Focused Monitoring (Rose, 2001) and Strategies for Living (Faulkner and Layzell, 1999), in the late 1990s. More recently, the publication of the survivor-edited This is survivor research (Sweeney et al, 2009) demonstrated just how far survivor research has travelled. A seminar series at the British Library, also in 2009 – from which this book has emerged – represents another key milestone.
Entitled ‘Researching in Mental Health: Sociological and Service User/Survivor Perspectives’, the series was convened by a sociologist, Lydia Lewis, and three survivor researchers, Ruth Sayers, David Armes and myself.1 The aim of the seminar series was to promote dialogue, debate and mutual learning between sociologists and survivor researchers. Around 40 people from as far afield as Northern Ireland, France and Germany attended each seminar. Delegates came from a wide variety of backgrounds, including service users and survivors who had and had not been involved in research, sociologists, clinical academics, mental health researchers, and practising clinicians. Each seminar was accompanied by display stands from two survivor-controlled organisations, the Survivor History Group and Recovery. The series was a rare platform to share examples of survivor-controlled research. But it was also a unique opportunity to explore the similarities and differences between survivor research and sociological research, to (p.2) establish common ground, and to expose and debate fracture points. As stated, this book emerged directly from the seminar series.
Sociology and survivors' voices
Sociology has a strong tradition of representing the lives of people who are marginalised within society, and the history of the discipline is littered with classic texts which do just that. For instance, William Foote Whyte's (1955 ) Street corner society, first published in 1943, sought to understand and represent the rich social world of underprivileged young boys and men in a Boston slum. Foote Whyte was an exponent of participant observation in urban sociology, a method he used to get closer to the experiences of the individuals and groups he studied. In explaining his research to a key participant, Foote Whyte commented: ‘I felt I could do very little as an outsider. Only if I could get to know the people and learn their problems first hand would I be able to gain the understanding I needed’ (Foote Whyte, 1955 , p 291). The resultant work demonstrates how the social worlds of those who are rarely heard can be explored and portrayed. Yet, while the voices of those within the text are strong, they are represented through the lens of an academic researcher who participated in and observed their social world in order to share it, along with its sociological implications, with the academic world.
The tendency to represent the voices of the marginalised through the lens of detached academic interpretation is also seen in the sociology of mental health and distress. For example, one of the greatest classical sociological texts is Erving Goffman's (1961) Asylums. In it, Goffman introduces the concept of institutionalisation by exploring the asylum from the perspective of its inmates. This was significant in bringing about deinstitutionalisation (the closure of Victorian asylums and their replacement with community care), meaning that Goffman's theory has had an immense and ongoing impact on people's lives. Beyond Asylums, there are numerous sociological theories about psychiatric service users and our experiences that are deeply valuable in illuminating the social conditions that create and compound mental distress, among them, inhumane treatments, iatrogenesis, poverty, labelling, inequality and discrimination. Yet, while these sociological theories are of great importance, often contributing to improvements in our lives, none have come from survivors:
we have never developed our own theory of madness and distress to underpin our research work. In its absence, (p.3) different theories about us continue to be created, some of which come closer to understanding our experiences than others. We tend to favour some of these and to reject others but none of these theories have come from a systematic and thorough investigation of our own knowledge. (Russo, 2012, p 33, emphasis in original)
In recent years, there has been some focus on lay perspectives within medical sociology. For instance, in the 1999 edition of A sociology of mental health and illness (Pilgrim and Rogers, 1999), a number of standpoints on mental health from within and beyond sociology were explained. Perspectives inside sociology included major theories such as social causation and social realism, while those on the outside of sociology were described as lay perspectives, psychiatry, psychoanalysis, psychology and the legal framework. Survivor testimonies such as Speaking our minds (Read and Reynolds, 1996) and From the ashes of experience (Barker et al, 1999) or the flourishing survivor-led research programmes at the Mental Health Foundation and (then Sainsbury) Centre for Mental Health were not mentioned. While lay perspectives and survivor accounts are not synonymous – largely because lay experts do not necessarily have personal experience – it is worth exploring some reactions to lay perspectives by medical sociologists because these expose some of the ways that sociology and survivors might engage.
One example is Turner's (2001) discussion of the nature of expertise. While the discussion includes a classification of experts, it fails to consider lay expertise, experiential knowledge or expertise by experience. Thus, the concepts of lay expertise and expertise by experience are often ignored by medical sociologists. More explicitly, Prior (2003) has questioned the increasing role of lay expertise in medical sociology. She argues that ‘the concept of lay expert is an oxymoron’ because lay people are not skilled or practised in diagnosing and managing illness, are experts in their particular case only, and can be plain wrong: ‘Indeed, it is only by virtue of “having experience” that we can even begin to think of such a creature as a lay expert’ (Prior, 2003, p 53). Prior continues:
all in all, they are experts by virtue of ‘having experience’. Yet, experience on its own is rarely sufficient to understand the technical complexities of disease causation, its consequences or its management. This is partly because experiential knowledge is invariably limited, and idiosyncratic. It generates knowledge about the one instance, the one case, (p.4) the single ‘candidate’…. Above all, lay people can be wrong. (Prior, 2003)
Experiential knowledge – the knowledge that comes from the exploration of individual and shared experiences – is the bedrock of survivor research. The arguments that this knowledge is partial, individual and limited to one's own self-care mean that survivor research, as well as lay expertise, can be subject to wholesale rejection.
We have seen two reactions to lay expertise and, by extension, survivor research within sociology: being overlooked, as in Turner's (2001) work; and being rejected, as in Prior's arguments. Within single research studies, Pilgrim and Rogers (1999) have outlined four main ways in which survivors' voices are silenced:
• Survivors' views are disregarded where they do not coincide with professionals' views.
• Survivors are seen as consistently irrational and therefore unable to give valid views.
• Professionals assume that service users, survivors and relatives share opinions, and where they conflict, service users' views are ignored.
• Survivors' views are reframed to coincide with professionals' views.
Survivor research is one way of enabling the voices of service users and survivors to be heard.
Reclaiming our voices
In their exploration of service user- and survivor-controlled research, Turner and Beresford (2005) found that there can be an unspoken yet pervasive discrimination at work, which mirrors the silencing and dismissal of lay experts:
Service users … felt there were negative often discriminatory responses to user controlled research. But these rarely surface in formal discussions and published literature. They are instead part of a hidden history of user controlled research, usually only finding expression in informal and unrecorded discussions among researchers or with service user researchers, or in the confidential and anonymised statements of peer reviewers, grant assessors and so on. (Turner and Beresford, 2005, p 11)
(p.5) While many marginalised groups have had their experiences explored and represented by academic sociologists – such as the boys and young men in Foote Whyte's (1955 ) study – for mental health survivors, this can be particularly noxious and damaging. This is because, historically, our experiences have been disbelieved or dismissed, while our distress has been reduced to symptoms of a psychiatric condition. This ‘medicalisation of misery’ causes direct damage through, for example, discrimination, social exclusion and invasive and harmful treatments such as psychopharmacology and Electro-convulsive Therapy (ECT). Simply being given a psychiatric diagnosis can result in our knowledge and experiences being dismissed as irrational, illogical, mad, extreme and emotional (Rose, 2003). This excludes survivors' voices from mainstream knowledge production, including sociology.
Survivor research directly challenges the silencing and exclusion of service user and survivor voices from mainstream research. In doing so, survivor researchers also challenge the sociological tradition of understanding and representing our worlds through the lens of detached academic interpretation. Peter Beresford has written extensively about the role and value of experience in knowledge generation, arguing that: ‘The greater the distance between direct experience and its interpretation, then the more likely resulting knowledge is to be inaccurate, unreliable and distorted’ (Beresford, 2003, p 4).
Beresford believes that survivor researchers need to reclaim and re-explore the role and value of first-hand experience. Of course, Beresford argues, such experience is inherently individual: we can interpret our own experiences in different ways at different times, with different people potentially having different interpretations of the same experience. Rather than using this to reject the role of experiential knowledge, as argued by Prior, we should instead seek ways of including range and diversity, and of synthesising individual experiences into collective understandings of commonalities and differences. To do this, Beresford argues that we must explore what distances us from our experiences and how we get closer to them.
This does not mean that survivors alone can understand and represent experiences, although Beresford is clear that the knowledge of others should never be privileged over that of survivors. Instead, others are able to get closer to the experiences of survivors through having similar experiences, for example, of marginalisation or of caring, and through ascribing to a set of value-based principles. Thus, Beresford's fundamental hypothesis is not how we can achieve neutrality, objectivity and distance, but how we can give the subjective centre stage in research-generated knowledge.
(p.6) Survivor research, then, is a medium through which we represent ourselves and our own voices, and generate our own knowledge. Many of the chapters in this book are testament to the power of exploring social phenomena through direct personal experience. For instance, Patsy Staddon draws on personal experiences, primary research with women who use alcohol and sociological writings to consider the development of a social model of alcohol use that directly challenges biomedical models of alcoholism and addiction.
Conversations on a new footing: the significance of the British Library seminar series
I began by stating that the joint survivor and sociologist seminar series at the British Library represented a key milestone in the history of survivor research. This is because, despite the marginalisation of survivor research (eg through insecure and infrequent funding, dismissal, and discrimination; see Beresford, 2009), survivor and mainstream sociological researchers were able to come together on equal terms. There are few platforms for survivor researchers to explore and express our methods and findings, and even fewer for us to share these with other academics. The seminars were a unique and rare opportunity to showcase our research and discuss it with a large and diverse audience. Presenting survivor research alongside more traditional sociological research enabled us to explore similarities and fissures, often through lively and engaging debates and ongoing conversations. But perhaps most significantly, the seminar series gave our work a new legitimacy by directly challenging unspoken discrimination and assumptions about survivor research. Doing so in the eminent surroundings of the British Library seemed to compound this sense of legitimacy. Rather than being examined, investigated or explored, mental health system users and survivors were able to speak for ourselves.
The seminar series was also testament to the journey that sociology has undertaken. From the radical urban sociologists who investigated the social worlds of the marginalised through participant observation to contemporary medical sociologists who acknowledge, albeit with dissent, the role of lay experts, sociologists are now acknowledging the power of participatory and survivor-controlled research and are beginning to engage with survivors on an equal footing. Many of the chapters in this book demonstrate the ways in which sociologists are embracing issues of voice and representation and the implications this has for research and practice. For example, Hugh Middleton's reflections on the epistemological assumptions that underpin mental health (p.7) services is revealing about the positioning of service users and survivors in knowledge production, while Katherine Pollard and David Evans reflect on the involvement of service users and survivors in research from their perspectives as (non-survivor) academics.
However, there is still some way for us to travel: ‘As far as the dominant debate is concerned, survivors and the survivors' movement still seem to be primarily seen as a source of experiential data, rather than creators of our own analysis and theory’ (Beresford and Wallcraft, 1997, quoted in Russo, 2012).
This can make it hard for us to influence sociological debates that typically take place in the arena of theory. As survivors such as Russo and Beresford have argued, survivor researchers must develop our own theories in order to truly reclaim our voices and thereby engage with sociologists on equal terms. At present, survivors are exploring the possibility of a social model of madness and distress (Beresford, 2010; Beresford et al, 2010). This is a complex undertaking, but an exciting one. Given the new legitimacy of survivors' accounts within sociology, sociologists should be uniquely positioned to engage with these survivor-generated models of madness and distress.
The British Library seminar series was funded by the Foundation for the Sociology of Health and Illness. The idea for the series came from Dr David Armes. Special thanks are due to Dr Lydia Lewis for her work in securing funding and organising the series. The series was administrated by the British Sociological Association, with special thanks due to Liz Jackson and Michelle Rhone. Thanks are also due to Dr Jude England, Head of Social Science Collections and Research, for her interest, enthusiasm and support.
Barker, P., Campbell, P. and Davidson, B. (eds) (1999) From the ashes of experience: reflections on madness, survival and growth, London: Whurr.
Beeforth, M., Conlan, E. and Graley, R. (1994) Have we got views for you: user evaluation of case management, London: The Centre for Mental Health.
Beresford, P. (2003) It's our lives: a short theory of knowledge, distance and experience, London: OSP for Citizens Press in Association with Shaping Our Lives.
Beresford, P. (2009) ‘Control’, in J. Wallcraft, B. Schrank and M. Amering (eds) Handbook of service user involvement in mental health research, Chichester: John Wiley & Sons, pp 181–97.
Beresford, P. (2010) ‘A straight talking introduction to being a mental health service user’, in R. Bentall and P. Sanders (eds) Straight talking introduction to mental health problems, Ross-on-Wye: PCCS.
Beresford, P. and Wallcraft, J. (1997) ‘Psychiatric system survivors and emancipatory research: issues, overlaps and differences’, in C. Barnes and G. Mercer (eds) Doing disability research, Leeds: The Disability Press, pp 66–87.
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Read, J. and Reynolds, J. (eds) (1996) Speaking our minds: an anthology of personal experience of mental distress and its consequences, Basingstoke: Macmillan/Open University Press.
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Rose, D. (2003) ‘Collaborative research between users and professionals: peaks and pitfalls’, Psychiatric Bulletin, vol 27, pp 404–6.
(p.9) Russo, J. (2012) ‘Survivor-controlled research: a new foundation for thinking about psychiatry and mental health’, Forum: Qualitative Social Research, vol 13, no 1, Art 8.
Sweeney, A., Beresford, P., Faulkner, A., Nettle, M. and Rose, D. (eds) (2009) This is survivor research, Ross-on-Wye: PCCS.
Turner, M. and Beresford, P. (2005) User controlled research: its meaning and potential, Eastleigh: INVOLVE Support Unit.
Turner, S. (2001) ‘What is the problem with experts?’, Social Studies of Science, vol 31, no 1, pp 123–49. (p.10)
(1) Coordinators came from and were supported by the British Sociological Association, Medical Sociology Group, Sociology of Mental Health Study Group and the Survivor Researcher Network.