Tess Maginess
Are you mad? A meta-analysis of an emancipatory research project undertaken by service users and ‘voluntary’ carers
Tess Maginess
Queen’s University, Belfast, Northern Ireland
Paper presented at the 36th Annual SCUTREA Conference, 4-6 July 2006, Trinity and All Saints College, Leeds
Background to research
The discourse of post-colonialism, post-modernism, cultural translation theory and feminism has created the architecture for what we now call ‘intercultural perspectives’. This paper will explore some of the more conspicuously radical and contested planar relations of these new perspectives and will also offer a small scale model of how they might both retain their necessary angularity and ‘edge’ while forming a holistic and even harmonious ‘cultural construction’.
The raw site for our construction is mental illness. You all remember Bertha in Jane Eyre. A group of women in the middle of a Mercator’s nowhere , not too far away from where Patrick Bronte (Prunty) father to Emily, Charlotte and Ann, was reared, were closeted for a couple of months to tell about their experience of madness. This might seem a very acute angle from which to begin a triangulation that would navigate us back to the global theme of this conference. But we are comforted by the mantra of the word ‘marginal’ as we interrogate the self-appointing centre.
This emancipatory research project arose out of a series of workshops on community approaches to mental health, which is part of a larger partnership project between Queen’s University, Belfast and Out and About, a grassroots voluntary group which works with disabled people and carers. Out and About is based in Armagh, a small city, some 40 miles from Belfast and serving a large rural hinterland.
Out and About had a tradition of developing learning projects that focused on particular areas of disability, in response to needs identified locally and particularly if important policy and new academic and policy research was forming in those areas. It was timely, therefore, to concentrate on carers and mental health. The programme was very kindly and patiently funded by the Rural Community Network, a regional NGO which helps voluntary and community groups in Northern Ireland.
The model for delivering the programme of workshops which was the foundation of what has turned into an emancipatory research project had been developed between Out and About and Queen’s University over a period of about seven years. With a committee encompassing disabled people, carers, volunteers and statutory organisations, Out and About developed a whole series of workshop courses accredited by Queen’s. Courses ranged from claymations made by people with learning disabilities to certificates in disability studies and community development, multimedia skills and assistive technology to the creation of websites on intergenerational images of disability, direct payments and women and disability. External funding was obtained so all courses were free of charge and the individual needs of participants were addressed; including transport, childcare, respite, notetaking and personal assistance. The programmes were all delivered and accredited through Queen’s Institute of Lifelong Learning and emphasised a participative and often debative approach to the design, content and learning styles. This, we would suggest, is the practical foundation for emancipatory research, given the lack of real access to the research process.
Rationale for project
Having conducted previous projects in the field of mental health, including an international conference and Open Learning programmes on the psychosocial approach and on the needs and resources of carers, it became clear to Out and About and Queen’s University, that there was a need for a clear and practical guide, based on the expertise of locally based service users and carers, which would help people encountering mental illness for the first time. That it became much more is the story of this paper.
Research and policy context
The publication of Valuing Carers: A Strategy for Carers in Northern Ireland (2002) highlighted the concerns that we had become familiar with in our grassroots work with disabled people and carers. In the specific field of mental health, a number of major reports have also appeared in the last few years, the most significant of which, for our present purposes, is the Strategic Framework for Adult Mental Health Services (2005), known as the Bamford Report.
According to the voluntary sector Charity MensSana (2005, p.2) research has revealed that the incidence of mental ill health is greater in Northern Ireland than in England or Scotland.[i] That there is a link between ill health and the inequalities of deprivation is now a truth universally acknowledged. The high incidence of mental ill health may also be due in part to the impact of a history of political conflict and violence (Smyth, 1998). Recent statistics reflect the growing prevalence of mental health problems, with as many as one in six people at any point in time having a diagnosis such a depression or anxiety (MensSana, 2005, p. 2).
Methodologies: theories and stories about how product became process
The ‘Thorn’ model: psychosocial treatments in severe and enduring mental illness
From the outset, the ethos of the programme was informed by the Psychosocial Model, specifically the Thorn model. One of the facilitators for the project was Fiona Martin from the School of Nursing and Midwifery at Queen’s University, an expert on the theory and practice of the Thorn model. The other was myself.
The advantage of the Thorn model was that it offered to users and carers an approach to managing mental illness that is holistic, person-centred, family based and geared towards the goal, not of curability, but of recovery. The emphasis within the psychosocial model is on the need for comprehensive and long term- treatment, including drugs (but acknowledging other augmentative therapies, including CBT), individually tailored programmes and active participation by patients and relatives (Healy et al, 2006, p.57).
The practical appeal of Thorn was obvious as an alternative to more traditional approaches which tended to create an ‘us and them’ situation between health care professionals and ‘patients’/carers. The artificial dialectic and the contingent imbalance of power were precisely the complaints participants had about their negative experience of the ‘system’.
The social model of disability
In emphasising the importance of empowerment, ownership and the expertise of disabled people and their carers, the Thorn model fits well with the Social Model of Disability as adumbrated by The British Council of Disabled People (2002-03):
In the broadest sense the social model of disability is about . . . a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment – whether physical, sensory or intellectual. . . The social model of disability can also be used to understand the family lives and personal relationships of disabled people. . . for some people, coming to terms with [disability] represents a personal or family tragedy. . . but the tragedy is that our society . . . continues to discriminate, exclude and oppress people viewed and labelled disabled.
The participants had been made familiar with this model.
Emancipatory research.
According to the British Council of Disabled People (2002-03) emancipatory disability research emphasizes values of control, accountability, empowerment, rigour and choice of methods.
As Janet Copperman (2003, pp23-24) notes:
For some time dissatisfaction with traditional research has been acute in the field of mental health, where the traditional biomedical approaches of psychiatry as ‘the only way of knowing’ have attracted increasing criticism. The growth of the user/survivor movement, work in the developing worlds, the women’s movement and adverse criticism of the Eurocentric basis of psychiatry – amongst other factors – have fuelled this.
This approach is now finally finding its way into clinical practice in mental health research (Gamble and Brennan, 2006). While the praxis of the research conducted by the participants was, in effect, emancipatory, we have just begun to touch on the theoretical framework.
Commenting on the process of research, Tew (2003, p.25) highlights, with Jan Wallcraft (2003, p.27) the importance of participants (stakeholders) constructing the research agenda to focus on issues of concern to oppressed and marginalised groups, vetting the ethics, selecting appropriate methodologies, using naturalistic methods, carrying out the research, negotiating meanings and significance, disseminating results and implementing them in terms of changing policy, practice and social attitudes.
The Social Model also fits well with certain tenets in Feminist theory and Post-Colonial theory. This is a theoretical field which could offer much to the project in terms of connecting with more global and international agendas, or to put it another way, of creating a resonance between our own marginality and that of other oppressed groups and between one ethnography and another and between one subject and another. As such, we may be able to participate in interculturalism and interdisciplinarity.
Postcolonial Theory
It is an interesting coincidence that the father of postcolonial theory was Franz Fanon, who was, by profession, a psychiatrist. When we consider Edward Said’s (1979) by now famous enunciation of the ‘self/other’ dialectic in relation to this research project, it is clear that the old medical model taxonomy represents the medical profession as ‘self’ and the ‘patient’ as ‘other’. The narratives of the participants in the project, often criticised health care professionals as ‘remote’, ’detached’, ‘heartless’. Patients’ are condescended to, infantilised, talked over (does he take sugar?), admonished as bold, naughty, inappropriate. Relatives are denied ‘audiences’ with senior professionals (the imperial ‘Governors’ of a closed world), told they are overreacting or faced down with the thinly disguised accusation that they are being naïve (for example in suggesting alternative treatments) or being just plain troublesome.
Bhabha (1994) emphasized the hybrid nature of colonialism and this also could be intercalated with the psychosocial approach. It could be suggested then, that mental illness is a ‘colonial’ state which at times imprisons both ‘doctor’ and ‘patient’ in a self/other polarisation, but the reality is that this polarisation is not nearly as adamantine as it seems on the surface; the categories of ‘self’ and ‘other’ are much more porous.
At a more fundamental level, sanity and insanity, rationality and irrationality are not neat oppositions, though there is sometimes a tendency to present them as such within objective medical model discourse. And beyond that, this fear of the irrational other is a false and unhealthy dichotomy which fails to acknowledge the presence of irrationality in the self. Irrationality is projected on to the ‘other’; the patient, and indeed, at times, the family of the patient, a collective selectivity that is almost a form of racism.
It is no easy task to break down centuries of devotion to a rationalist model of the universe, with the consequent demonisation and othering of the irrational. Even in the light of deconstructionist theory and postmodernism, many people, both ‘doctors’ and ‘patients’ hold on to the tendentious idea that the self is, somehow, ‘naturally’ whole and unified. If the ‘normal’ self is fractured and polyphonic, why do we still insist, irrationally, that mad people should be ‘cured’ into wholeness?
Feminisms
As it transpired, all of the participants in the project were women. This created its own particular dynamic. Feminist theories could deepen the evidence based insights emerging during the workshops. Some participants were critical of the assumption that they would automatically assume the caring role because it was somehow their ‘natural’ role as women. Feminist thinkers such as Mary Daly (2002) and Eithne McLaughlin (1993) would evidence this as an example of the ‘cultural construction’ of women’s identity, especially in more conservative contexts such as Northern Ireland. Related to these kinds of assumptions was the tendency, reported by many of the participants, towards an insouciance regarding the other demands that face women in addition to their role as carers.
Another issue relating to the gendering of care is the infamous ‘HEE ’, a syndrome where relatives exhibit ‘high expressed emotion’ in situations of crisis. This has generally been regarded by the medical profession in very negative terms. (Healy et al, 2006, p.23, 24). Emotional reactions are seen by society as somehow feminine. The cultural construction of femininity or feminineness which underlies such stereotyping is rarely examined by those who promote such views.
A big area for feminist analysis has been the representation of femininity as madness. From Ophelia to Bertha, the madwoman in the attic in Jane Eyre, literature has furnished an embarrassment of riches in the sheer quantity of madwomen who trail (and they tend to trail beautifully) through novels, plays and poems. Out of this has emerged an ever expanding body of feminist critical theory on the subject of female madness (Showalter, 1987).
Jeanette Copperman (2003, p.32)notes that the attributes of a healthy male include independence, not being at all emotional, not easily influenced by others, very active, not excitable in minor crises, competitive, knowledgeable about the ways of the world, able to make decisions easily, while female attributes were a reverse mirror. Most tellingly, the attributes of a healthy adult were those of a healthy man. Real men don’t eat quiche and most definitely, do not cry. If they are caught with a big fist grinding back emotion, this is taken as a clearly classifiable measure of their unwellness. The anal logic of the locker room is transgressed. Here are men behaving badly, going soft, out there in the conquering, mastering world, going native.
Copperman (2003, p.32) notes that since the mid 80s it has become recognised that giving disempowered groups a voice requires the use of different approaches. Feminist researchers and the user/survivor movement have helped to influence the use of qualitative methods, though there is still a strong bias in favour of quantitative methodologies, despite the poor outcomes of such an unquestioning iatrogenic.
Transformative/inclusive/qualitative research methodologies
One of our problems was how to weave together the silk and buckram threads that we had spun. As the project progressed, a big reservoir of expertise was being assembled which encompassed critical analysis of policy documents, leaflets and reports from the voluntary sector, statistical information about mental health services, personal testimony in the form of narratives and testimonies, creative literature including poetry and prose, as well as academic theory from the fields of disability studies, feminism, cultural theory, community development and medicine. How could we hold true to our original aim of making a straightforward manual; a product; not exactly a ‘Handy Hints’ but something fairly practical, and how, in the face of the actual unfolding of the project, could we hold true to the process that propelled it and, of course, changed it. We had grown too big for our boots.