[This is an article printed in Concept: The Journal of Contemporary Community Education Practice Theory in Autumn 2008]
By listening to and learning from their stories from the past, and by understanding the views of those who have been in mental institutions in our own time, we create the greater possibility of making mental health treatment more humane, less imposing, less impersonal, and more responsive to what the people on the receiving end want or do not want. (Reaume, 2000: 253).
Those of us who use mental health services are usually seen as sufferers of mental illness, as victims of stigma and discrimination and as dangerous people needing to be controlled. Our madness and distress are understood as irrational and beyond understanding – some people are sane and some people are insane – and the former can never understand the latter [and there is no need to]. The medical model dominant in mental health services constructs certain individuals as sick and in need of treatment, and draws on the ‘expert’ knowledge of psychiatry for diagnosis and prognosis, and a reification of mental illness. Unlike other medical specialities, psychiatry has legal powers to detain a person diagnosed with a mental illness and considered to be a danger to his or herself or to others, and to treat them against their will. While it is a minority of service users who are under compulsion, the effects of this power can be felt throughout the mental health system, in what Rogers and Pilgrim call a ‘gradient of coercion’ (2003: 71)[. This is when] where some people are under legal compulsion to accept treatment, where some are under threat of such compulsion and so agree to something they might otherwise not (de facto compulsion), to the majority who are conscious of the possibility of coercion.
We have long been objects of social policy, of professional discourses and of the history of psychiatry. We have been constructed as people who are passive, rather than people who can act, however limiting the structural issues [constraints] may be. ‘As objects, one’s reality is defined by others, one’s identity created by others, one’s history named only in ways that defined one’s relationship to those who are subject’ (hooks, 1989: 42-3). For example, unlike most disabled people, those of us who experience mental distress are constructed in terms of our use of services rather than our experience of impairment[,] and society’s role in disabling us is therefore concealed. I consider this as evidence of how we are situated because of mental health legislation and the medical model.
The reality is that we have long been active in challenging these views and assumptions, and in generating ideas for better services and better working practices in the delivery of more effective services. In recent years, our demands to have our voices heard and our views included in mental health policy, service planning and management have been successful. Legislation such as the NHS and Community Care Act (1990) and the Mental Health (Treatment and Care) (Scotland) Act 2003 and policies such as the Patient Focus and Public Involvement Framework now mean that service user involvement is automatically part of every new development in mental health services.
The problems of success
However, success brings problems and we have found that the increased demands to participate in consultations, planning groups, evaluations etc. leaves mental health collective advocacy groups with less time and energy to focus on what we felt was important. We have also found that most user involvement initiatives operate so that important structural issues are effectively kept off the agenda (Hodge 2006). Such demand has also meant groups miss out on the opportunity to learn from one another. The focus on local issues (at local authority or health board level) means that we cannot always keep up to date with issues at a Scottish or UK level [European and international].
Collective advocacy groups are products of the social context in which they arise. Mental health services are not generally places or spaces in which those of us who use them have had positive experiences of power, so many of us who become members of collective advocacy groups may not have had the opportunity to explore issues of power and to challenge our own beliefs and behaviours. Therefore, there is a danger that we will generally replicate the power imbalances present within most mental health services. For example, we may see ourselves as primarily people with mental health problems and not as people who are capable of working together to effect change. Beresford and Wallcraft (1997) argue that psychiatry has had a powerful influence on how mental health service users understand their own experience of madness and distress, and on how they identify, individually and collectively. They contrast this with the experience of disabled people who developed the social model of disability based on their own experiences and understanding, independent of professionals and services.
So we need to explore ways of engaging with these kinds of issues. Some of us involved in Edinburgh Users Forum had been casually reminiscing about events and people from our past, and it was always noticeable how much more energy we had when remembering way back when compared to how we we talked about current demands. Perhaps a focus on our history as mad people and as activists would help us in our current work? By re-connecting us to the reasons mental health service users had set up our groups, by learning from the past, and by working together, we could use the past to change our future…
Then in October 2007, the visit of Canadian mental health ‘consumer’ and academic, David Reville, to Edinburgh. David teaches a course at Ryerson University called Mad People’s History, originally designed and taught by Geoffrey Reaume, and this caught our attention and our imaginations. This course looks at ‘madness’ from the perspective of those who were, or are, labelled as ‘mad’ as opposed to the history of psychiatry [a medical speciality] or the history of mental illness [a medical construct]. It is part of the ‘the wider goal of advancing social justice struggles for the vast majority of mad people who could never dream of being in a position to take any university course, let alone one that speaks so clearly about their own collective history.’ (Reaume, 2006: 174)
‘Oor Mad History’
We successfully applied to NHS Lothian for funding for a two year project to take this work forward. Oor Mad History will involve service users from all the Lothian mental health advocacy groups, the Patients Council at the Royal Edinburgh Hospital, East Lothian Involvement Group, West Lothian Mental Health Advocacy Project, Service Users Midlothian and Edinburgh Users Group. It will be managed by CAPS – a user-led advocacy organisation which has played a major role in developing collective advocacy throughout the Lothians.
Language is significant – we chose each word in the project’s name carefully. Oor emphasises the collective nature of the project and the Scottish context. Mad is a loaded term, one which challenges the medical focus of much of the language in this whole area. No term in the history of madness is neutral — not mental illness, madness, or any other term. Madness, however, is more respectful of the huge diversity of views within this field over a much longer period than a term exclusively identified with biological determinism that has developed since the early twentieth century (Reaume 2006: 182).
For many marginalised groups, oral history is a key way of discovering and recovering their history. Thomson (2000) gives many examples of how such groups have been able to sustain themselves through hardship through remembering their history and using the confidence it gives them to mobilize politically. Oral history usually, though not always, takes a more collective approach [than what?]. The Oral History Society (2007) describes oral history as the ‘recording of people’s memories’ which ‘enables people who have been hidden from history to be heard’. Thomson (2000) argues that all history has a social and political purpose, whether stated or not. What we can do with oral history is to be explicit about our social and political purpose. Harding and Gabriel claim that ‘[a]n enduring and dominant theme in generating life-story interviews … has been the enrichment and democratisation of history and the empowerment of ‘disenfranchised’ groups’ (2004: 186).
We intend that both the content (our history as activists [or active agents of change]) and the process (ourselves as oral historians) will challenge the more usual construction of mental health service users as objects and argues that we are agents in our own lives and can actively participate in the planning, management and evaluation of mental health services. We also expect it will strengthen collective advocacy groups by shaping ‘their sense of collective and communal attachment and the opportunities for further mobilisation’ (ibid.: 200) which should enable us to resist the user involvement agenda and to focus on our priorities.
Oor Mad History will have two key tasks
- to gather and organise material which has been stored in organisations’ premises and other material which may be donated by individuals;
- interview key people and transcribe the interviews.
The transcribed interviews and the organised archive will form a resource from which a number of products can be developed, e.g. DVD, website, book, etc.. The material will determine what formats the products of the project will take, taking into consideration, issues to do with accessibility of such products e.g. literacy, sensory impairment, etc.. However, it is important that we do not to decide too soon on what format such products might take.
A Community History Worker has been appointed who will have [has] the responsibility to co-ordinate the activity of Oor Mad History and supporting the activists. We will recruit, train and support people currently active in service user groups to carry out interviews and other aspects of Oor Mad History, based on their interests. We hope that this new project will draw a wider range of mental health service users into the work of the project and to wider user involvement.
Our aim is that the project will benefit
- People who use or who have used mental health services in Lothian: by becoming involved with the project and being part of a wider group learning more about our history, they will develop skills in interviewing and/or archiving
- Collective advocacy groups: by remembering our own history, we will reconnect with the reasons our groups came into being, celebrate our successes and learn from our mistakes and failures.
- Workers: both in the voluntary and statutory sector, workers will gain a broader appreciation of how mental health service users have made and continue to make a difference to services
- Trainers and educators: this resource will provide valuable material for people who do training in mental health awareness, user involvement etc. as well as those responsible for professional and academic education
- Researchers: the resource will provide unique materials for those researching the history and current situation of mental health services, psychiatry, etc.
- Public: through the products developed from the archive and the interviews, the public will get a broader perspective on mental health service users and this will counter stigma.
However, we must be cautious about expecting too much from an oral history project. Harding and Gabriel (2004) found that ‘the changes produced are small and local (186)’ and that attempts to represent ‘marginal experience’, inevitably define further positions of marginalisation for those who do not get to say their bit’ (Harding, 2002: 91, cited in Harding and Gabriel: 2004: 197).
Beresford, P. and Wallcraft, J. (1997) ‘Psychiatric System Survivors and Emancipatory research: Issues, overlaps and differences.’ In: Barrnes, C. and Mercer, G. eds. Doing Disability Research [Internet] pp. 66-87. Available from http://www.leeds.ac.uk/disability-studies/archiveuk/Barnes/Chapter%205.pdf [Accessed 20 June 2008].
Harding, J. and Gabriel, J. (2004) ‘Communities in the Making: Pedagogic Explorations using Oral History.’ in International Studies in Sociology of Education, 14 (3): 185-201.
Hodge, S. (2005) Participation, discourse and power: a case study in service user involvement. Critical Social Policy, 25(2): 164-179.
hooks, b (1989) Talking back: thinking feminist, thinking black Boston, MA: South End Press.
The Oral History Society (2007) The Oral History Society. [Internet]. Available at: http://www.ohs.org.uk/ [Accessed 20 June 2008].
Reaume, G. (2000) Remembrance of Patients Past: Patient life at the Toronto Hospital for the Insane, 1870-1940. Don Mills, Ontario: Oxford University Press.
Reaume, G. (2006) ‘Mad People’s History.’ in Radical History Review 94: 170-82.
Thompson, P. (2000) The Voice of the Past: Oral History. 3rd ed. Oxford: Oxford University Press.