What is the state of play? Critical reflections on service user/consumer

involvement in mental health research across two national contexts

Dina PoursanidouCatherine Roper

What are the knotty issues and debates in the area of service user/consumer involvement in mental health research – from our experience

as service user/consumer researchers?

Catherine Roper – University of Melbourne, AustraliaDina Poursanidou – University of Manchester, England

Service User Academia Symposium1 December 2014

University of Otago, Wellington, New Zealand

Victorian context & character

• Emergent; undefined• No formal consumer research networks• Not a lot of consumer led research• Often embedded in clinical paradigm eg

National institute for mental health research - generation of consumer research agenda (diagnostic based) http://nimhr.anu.edu.au/research/projects/consumer-priorities-research/relevant-publications

outcome measures, clinical education

Being the least powerful partner in co-production

• Whose agenda is it? • How will consumer leadership be established

in the enterprise?• How will growing consumer capacity be built

in?• How much influence do consumers really have

to change things?• How will power be attended to?

Research reflexivity (Rix, Barclay & Wilson, 2014)

• 3 lenses reflexive practice: self within research, interpersonal relationships and systems “Can a white nurse get it? ‘Reflexive practice’ and the non-Indigenous clinician/researcher working with Aboriginal people”

• Investigating researcher positioning, power imbalances & negative institutional policy and practice

• Could be useful to co-production research between service-user/consumer researchers/and non service user academics/allies

The process of our collaboration (I)• First meeting with Cath at the 2013 Service User Academia Symposium • No meaningful contact/no discussion – we just went to each other’s session • I had heard about Cath in England from a service user researcher colleague –

but I did not know Cath’s work • Cath’s keynote speech on the first day of the 2013 symposium – First

impressions of Cath…▶Striking presence with red highlights…▶Cath’s interest in embodied experience resonated with me▶Being late for keynote speech and miscalculating time – resonated with my own difficulties with time management (being late for meetings; not delivering on time) ▶Cath’s openness/transparency about her personal difficulties (with time); making herself vulnerable; resonance with my Service User Researcher role

▶ Scholarship ‘that doesn’t break your heart just isn’t worth doing’(Behar, 1996, The Vulnerable Observer – Anthropology that Breaks Your

Heart)

▶Doing scholarship in which ‘the blood is left in’ (Moriarty, 2013)?

The process of our collaboration (II)• Identified funding opportunity The Manchester Melbourne Engagement

Fund –funding short visits of Manchester University academics to strengthen or establish collaborations with academics at Melbourne University

• Contacted Cath at the beginning of February 2014; deadline for application end of March 2014; A partner at University of Melbourne a prerequisite for funding allocation

• Wrote the project proposal ; email communications with Cath; application not successful

• Outputs of the collaborative project a workshop run jointly at the 2014 Service User Academia; an outline research grant proposal To comparatively and cross-nationally map out the landscapes of service user involvement in mental health research in England/the UK and Australia with a view to identify overlaps, commonalities and synergies, as well as differences, points of departure and tensions when it comes to service user involvement in mental health research in the two national contexts

• Was the collaboration with Cath for the Manchester Melbourne Engagement Fund a ‘shotgun partnership’ (Farrier et al., 2010)? ‘Love match or shotgun wedding’ (Ashmore, 1995)?

The process of our collaboration (III)• Funding opportunity identified by Cath in summer 2014

Travel fellowships offered by Melbourne University • A proposed output at the travel fellowship application

submitted by Cath a joint paper at the 2014 Service User Academia Symposium

• In summer 2014 we started having long telephone discussions lasting over 2 hours each; email communications

• Negotiating the focus of the joint paper for the 2014 Service User Academia Symposium…

• Honesty; Openness; Respect; Flexibility; Commitment; Dedicating time to our collaboration

• How the initial ‘shotgun wedding’ started developing to a genuine ‘love match’…

Two sets of crucial knotty issues/debates in the area of service user involvement in

mental health research

• Identity issues/Identity politics/Self-identification/Self-descriptors/Language/Attitudes towards the role and subjectivity of mental health service user researchers

• Relationships between mental health service user researchers/academics and non-service user researchers/academics

Troubling language/self-identifications/identity politics I

• Service User Researcher or Researcher Service User?

• Consumer?The neoliberal discourse of ‘consumer participation’ in planning and evaluating health/mental health services and in health/mental health services research Consumer choice, control and power‘The consumer as king’ (Shaw, 2009)

• Psychiatric Survivor?• Distressed or disabled? Psychosocial disability (USA)• Person with lived experience?Lived experience of what?

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Expert by Experience? (a)I avoid identifying myself as an ‘expert by experience’ - a common label nowadays for mental health service users which I question. If I was to be called an 'expert by experience', what exactly would I be an expert on? On compulsory hospitalisation (sectioning) and how it can destroy one's confidence perhaps? But having had an experience of sectioning (my own experience) does not necessarily make me an expert on detention. It just means that I have lived through detention and I have the experiential/embodied knowledge that stems from that, so when I talk about detention it is not just on a cognitive/academic/theoretical level using knowledge that I have acquired from books, but on an affective, visceral, deeper level as well. Does this make me an expert? I am not sure...Or would I be an expert on madness? But how can one be an expert on madness if madness is something that cannot be known and understood in its entirety, something that cannot be easily articulated? And are we not all experts through our experiences? if so, why would we need the presumed epistemological privilege of being a mental health service user to claim such expertise? (From email communication with a service user academic in USA)

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Expert by Experience? (b)Furthermore, raw experience (embodied, affective/emotional experience ) is not, in my view, automatically translated into knowledge and expertise...I think raw emotional experience – if such a thing exists- needs to be processed and detoxified and reflected upon in order to become available for thought, in order to become knowledge... so, experience does not equal expertise...On the other hand, I do recognise and value the collective experiential knowledge and expertise that emerges from the psychiatric survivor movement – but I would not call myself ‘an expert by experience’. Finally, apart from ‘experts by experience’ mental health service users often identify themselves as ‘Service User Experts’ ,‘Expert Patient Trainers’ etc…I feel quite uncomfortable when I see what I perceive as the self-serving 'careerism' of those professionalised lay experts , and the commodification of personal trauma that seems to go with it a lot of the time - although I can understand very well how a ruthlessly competitive job market forces mental health service users to have to ‘sell' their stories of 'lived experience' of mental distress as a qualification for employment...I wonder how immune to that I am myself…(From email communication with a service user academic in USA)

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Identities & relationships

• Researcher becomes service user• Service user becomes researcher

Troubling language/self-identifications/identity politics II

• Mad-identified (David Reville)? Mad Pride – Romanticisation of mental distress? • Service User Consultant? Not recognising my double identity• Public representative? • Patient leader? • Patient research ambassador?• Public contributor?• Patient and Public Involvement (PPI) research partner? ------------------------------------------------------------------------------• Where is home for me? In Academic Research or Psychiatric Survivor Movement?

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LIMINAL

(http://mewithmyheadintheclouds.blogspot.co.uk)

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A liminal identity space…• Home for me = a liminal space in - between academic research

and psychiatric survivor movement • ‘Living in the borderlands; writing in the margins’ (Short, Grant

& Clarke 2007)• [Learning To] Walk Between Worlds (Church, 2001)• A double identity of an academic researcher and mental health

service user– ‘Breaking the rules of Academia’ – Transgressive identity (Grant)

• Being able to theorise one’s own lived experience… • Being able to blend first person experiential accounts where

‘the blood has been left in’ (Moriarty, 2013) with ‘properly academic’ (i.e. critically detached , ‘objective’ and rigorous) commentaries…

• ‘The lack of clear boundaries involves transgression and threat’ (Jones, 2012)

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BORLDERLANDS

(http://futuroenusa.com/borderland-expone-el-drama-del-inmigrante)

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Liminality and trouble… ‘I am here because I am a woman of the border: between places, between identities, between languages, between cultures, between longings and illusions, one foot in the academy and one foot out’ (Behar, 1996, p. 162; Jewish Cuban-American writer)

‘Troubled subject positions’ (Wetherell, 1998)

A liminal identity space- a difficult, unsettled and unsettling, troubled and troubling, contested space; it can also open up creative and subversive possibilities…

‘The in -between space gets us unstuck …by not falling into certain categories’ (Nayak, 2014)

‘An anxious, abstract space…a non space’ (Nayak, 2014) 19

To live in the Borderlands means you…

are neither hispana india negra espanolaneither a white woman, you are mixed-race, mulata, half-breed caught in the crossfire between campswhile carrying all five races on your backnot knowing which side to turn to, run from… When you live on the borderpeople walk through you, the wind steals your voice, you're an ass, ox, scapegoat,forerunner of a new race,half and half-both woman and man – neither - a new gender….

In the Borderlandsyou are the battlegroundwhere enemies are kin to each other; you are at home, a stranger,the border disputes have been settledthe volley of shots have shattered the truce you are wounded, lost in actiondead, fighting back…

To survive the Borderlandsyou must live without borders,be a crossroads.

Gloria Anzaldua, 1999, Borderlands – La Frontera, 2nd edition, San Francisco, Aunt Lute Books

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Paradoxical space(http://daltarak.blogspot.co.uk)

Mental health service user involvement in academic research as ‘a paradoxical space’ (Rose, 1993; Spandler, 2009)

Potential simultaneously for both emancipation and appropriation/co-optation/assimilation (Beresford, 2002)

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Service user involvement as appropriation/assimilation/co-optation Editorial - Asylum Toronto

[…] Many so-called ‘mental health activists’ have become consumed by assimilationist strategies, opting to promote the idea that change can be delivered from within [the mental health system], and advocating peer support and continuing professional education as the new solution to age-old systemic problems: coercion and forced treatment, racism and white supremacy, poverty, homelessness and social isolation … When did we start seeing the mental health care ‘system’ in the likeness of a group of naïve and idiotic professionals – doctors, nurses, health practitioners, policy makers – who are at the same time well-intentioned and unknowing? And when did we decide that a seat at their table or a moment of their time would make even a bit of difference? What led us to believe that there was power in disclosing our stories, our experiences and our secrets? When did we start deluding ourselves that we mattered that much – or at all, in truth? It would be laughable if it weren’t so pervasive. And dangerous.’ (Asylum - The magazine for democratic psychiatry, Volume 20, Number 4, 2013, p.3)

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Recovering Our Stories: A Small Act of Resistance

‘We all have stories. Many of our stories are deeply personal. Some of our stories are painful, traumatic, hilarious, heroic, bold, banal. Our stories connect us—they reflect who we are and how we relate to one another. Stories are extremely powerful and have the potential to bring us together, to shed light on the injustice committed against us and they lead us to understand that not one of us is alone in this world. But our stories are also a commodity—they help others sell their products, their programs, their services—and sometimes they mine our stories for the details that serve their interests best—and in doing so present us as less than whole. - Becky McFarlane, Recovering Our Stories event, June 2011’ (Costa et al., 2012, p. 86)

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The paradoxes of mental health service user involvement in academic research as lived contradictions

• The structural paradoxes of mental health service user involvement in academic research as ‘lived contradictions’ (Cresswell and Spandler, 2013; Hamilton, 2001)

• A past diagnosis of ‘psychotic depression’, detention under a section, and use of secondary mental health services got me a job on the IMHA project– The ‘mental illness as an advantage’ paradox;) ‘For some academic researchers, mental illness can be an advantage’ (The Guardian, 2009)

• Being a mental health service user in academic research -privileged as having ‘unique insights’, ‘valuable service user knowledge’, ‘expertise by experience’; BUT the mental health service user identity is a stigmatising , devalued, ‘spoiled’ (Goffman, 2009) social identity I have often wished to disown

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Relationships between mental health service user researchers/academics and non-service user researchers/academics

• In one study (Patterson et al., 2014, p.5) mental health service user participants involved in research acknowledged that ‘engaging with or employing service users was commonly perceived as risky in academic environments’

• What exactly is considered ‘risky’ (presumably by non-service user academics?) about engaging with service users?

• This idea of service user involvement as a risky endeavour links I think to the notion of ‘unsettling relations’ (Bannerji et al., 1991; Church, 1995; Church 2005) between service users and traditional (non- service user) researchers; it also links I think to the notion of mad/survivor/service user knowledge as ‘difficult and troublesome knowledge’(LeFrancois, Menzies and Reaume, 2013; Pitt and Britzman, 2003) and as ‘dangerous knowledge’(Cooper and Lousada, 2005)

• I found the comment about risk very interesting as it compels us to ask what the risk is about and think more in-depth about the emotional dynamics (including unconscious processes) at play in the encounters between service user researchers/academics and non-service user researchers/academics;

• Such more in-depth thinking and discussions will hopefully take us beyond repeated, rather superficial arguments about the need to provide ‘more training’ to service user researchers/academics and non-service user researchers/academics where more training seems to be considered as panacea when it comes to resolving difficulties in the complex relations between the two groups

Epilogue: Some hard and troubling questions…

• Are Universities genuinely interested in mental health service user/survivor knowledge and involvement in research?

• How far can the emancipatory and democratic ideals, and the ethical claims to equality, diversity and inclusion that underpin the discourse of mental health service user involvement in research, be reconciled with the markedly hierarchical, exclusionary and largely non-democratic infrastructures, cultures and relations that characterise Academia?

• How to do collaborative, relational and participatory research work in Academia when individual success and competition dominate? 26

References

• Ashmore, C. (1995) ‘Partnership sourcing-love match or shotgun wedding?’, Engineering Management Journal, 5(4), 148-152.

• Bannerji, H., Carty, L., Dehli, K., Heald, S. & McKenna, K. (1992) Unsettling Relations: The University as a Site of Feminist Struggles, Toronto, Women’s Press

• Behar, R. (1996) The vulnerable observer: Anthropology that breaks your heart, Boston, Beacon Press

• Beresford, P. (2002) ‘User Involvement in Research and Evaluation: Liberation or Regulation?’, Social Policy & Society, 1:2, 95-105

• Church, K. (1995) Forbidden Narratives: Critical Autobiography as Social Science, London, Routledge

• Church, K. (2001) Learning To Walk Between Worlds - Informal learning in psychiatric survivor-run businesses: A retrospective re-reading of research process and results from 1993-1999, NALL Working Paper No.20, Network for New Approaches to Lifelong Learning, Toronto, Ontario Institute for Studies in Education, University of Toronto

• Church, K. (2005) ‘Commentary’ in Tilley, S. (Ed.) Psychiatric and mental health nursing: the field of knowledge, Oxford, Blackwell Science

References• Cooper, A., & Lousada, J. (2005). Borderline welfare: Feeling and fear of feeling

in modern welfare, London, Karnac Books• Costa, L. et al. (2012) ‘Recovering our stories: A small act of resistance’, Studies

in Social Justice, Vol 6, Issue 1, 85-101• Farrier, A., Davis, R., Froggett, L. & Poursanidou, K. (2010) ‘A Shotgun

Partnership’: a case study analysis’, Journal of Place Management and Development, 3 (2), 136-148

• Goffman, E. (2009) Stigma: Notes on the management of spoiled identity, New York, Simon and Schuster

• Hamilton, M. L. (2001) ‘LIVING OUR CONTRADICTIONS: CAUGHT BETWEEN OUR WORDS AND OUR ACTIONS AROUND SOCIAL JUSTICE’, The School Field, Vol. XII Number 3/4, pp. 19-31

• Jones, N. (2012) ‘Schizophrenia Bulletin, the BJP & the Politics of First-Person Accounts’, Ruminations on Madness, 15 August (http://phenomenologyofmadness.wordpress.com/2012/08/15/schizophrenia-bulletin-the-bjp-the-politics-of-first-person-accounts). Accessed 19 February 2014

• Le Francois, B., Menzies, R. and Reaume, G. (eds.) (2013) Mad Matters: A Critical Reader in Canadian Mad Studies, Toronto, Canadian Scholars Press

References• Moriarty, J. (2013) ‘Leaving the blood in: Experiences with an autoethnographic doctoral thesis’. In

Contemporary British Autoethnography, edited by N. P. Short, L. Turner & A. Grant, Rotterdam, Sense Publishers

• Nayak, S. (2014).Race, Gender and the Activism of Black Feminist Theory: Working with Audre Lorde, Hove, Routledge

• Pitt, A., & Britzman, D. (2003) ‘Speculations on qualities of difficult knowledge in teaching and learning: An experiment in psychoanalytic research’, Qualitative Studies in Education, 16(6), 755-776

• Rix, EF., Barclay, L., Wilson, S., (2014) Can a white nurse get it? ‘Reflexive practice’ and the non-Indigenous clinician/researcher working with Aboriginal people, Rural and Remote Health, 14:2679 http://www.rrh.org.au/publishedarticles/article_print_2679.pdf

• Rose, G. (1993) Feminism and Geography: The Limits of Geographical Knowledge, Minneapolis, University of Minnesota Press

• Shaw, E. (2009) ‘The consumer and New Labour: the consumer as king?’ in Simmons, R., Powell, M. and Greener, I. (Eds.) The Consumer in Public Services –Choice, Values and Difference, Bristol, The Policy Press

• Short, N., Grant, A. & Clarke, L. (2007) ‘Living in the borderlands; writing in the margins: an autoethnographic tale’, Journal of Psychiatric and Mental Health Nursing, 14, 771–782

• Spandler, H. (2009) ‘Spaces of psychiatric contention: A case study of a therapeutic community’, Health & Place, 15, 672–678

• Tickle, L. (2009) ‘For some academic researchers, mental illness can be an advantage’, The Guardian, 25 August (www.theguardian.com/education/2009/aug/25/mental-health-academic-research). Accessed 19 February 2014

• Wetherell, M. (1998) ‘Positioning and interpretative repertoires: Conversation analysis and poststructuralism in dialogue’, Discourse and Society, 9(3), 387–412