Transcript Document

From Willow Ward back to Academia: Using a
personal narrative of identity to trouble
‘mental health service user involvement’ in
University-based research
Dina Poursanidou
MHRN Annual Scientific Meeting
Liverpool, 7 March 2014
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My purpose in this talk I
• Draw on my experience of having worked as a Service User Researcher
in 2 English HEIs
•Service User Research Fellow (UCLan); IMHA project (MHRN
supported)
•Honorary Research Associate/Service User Researcher (Manchester
University); E-learning resource study
Research methods teaching to service users/carers (EQUIP programme –
MHRN supported)
• Reflect critically on my struggles in re-entering Academia following a
very severe and prolonged mental health crisis; employed as a
Research Fellow (traditional research post) in UCLan before my mental
health crisis; 8 years post-doctoral research experience
• Particular focus  Unremitting identity struggles –constructing and
negotiating my double identity
– Negotiating the swamp…
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My purpose in this talk II
• Use my autobiography to ask wider questions about the challenges and
support/development needs of mental health service user researchers
involved/employed in English HE contexts
• Use my lived experience to problematise ‘mental health service user
involvement’ in University-based research; User involvement in mental
health research has tended to be talked about largely uncritically and
unreflectively (Beresford, 2002)
• The reality of meaningfully involving mental health service users in
academic research compared to the neoliberal rhetoric of ‘consumer
participation’– markedly more complex, messy, troubled and full of
contradictions and paradoxes
• How do affective/emotional, intersubjective, institutional , and sociocultural, political and economic dimensions of experience shape barriers
to meaningful mental health service user researcher involvement in HE
contexts?
• What are some of the changes that need to be created in HE contexts to
start addressing these multi-faceted barriers?
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My purpose in this talk III
-Not a coherent, consistent, linear, seamless
story
-A story characterised by contradictions,
paradoxes, ambiguities, complexities,
interruptions, fragmentation and openendedness
-A continually evolving and developing personal
narrative of identity
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My purpose in this talk IV
Using myself as an instrument of knowing and
understanding …
Making myself vulnerable…
With the conviction that
Scholarship ‘that doesn’t break your heart just
isn’t worth doing’
(Behar, 1996, The Vulnerable Observer – Anthropology that
Breaks Your Heart)
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Language/Self-identifications/Identity politics I
• Researcher Service User?
• Service user? Used secondary mental health services
from July 2008 to March 2013
• 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? (I)
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? (II)
Furthermore, raw experience (embodied, affective/emotional experience ) is not,
in my view, automatically translated into knowledge and expertise...I think raw
emotional experience 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 selfserving '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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Language/Self-identifications/Identity politics III
• Ex-inmate (David Reville)?
• Mad-identified (David Reville)?
• Mad Pride – Romanticisation of mental distress?
• Where is home for me?
Academic Research or Psychiatric Survivor
Movement?
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A liminal space in between…
• Home for me - a liminal space in between academic research
and psychiatric survivor movement
• ‘Living in the borderlands; writing in the margins’ (Grant, 2007)
• Hybrid identity (Grant) – academic researcher + mental health
service user
• Having a double identity of an academic researcher and a
mental health service user/survivor – ‘Breaking the rules of
Academia’ – Transgressive identity (Grant)
• Being able to theorise one’s own lived experience…
• Blending 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)
• Inhabiting a liminal space – a difficult, unsettling and
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contested space that can also open up creative possibilities…
Liminality…
‘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)
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Paradoxes of service user involvement in academic research as
lived contradictions
• Service user involvement in academic research as ‘a
paradoxical space’ (Spandler, 2009); Paradoxes as ‘lived
contradictions’ (Cresswell and Spandler, 2013)
• A past diagnosis of ‘psychotic depression’, detention under a
section, and use of secondary mental health services got me a
job – ‘Mental illness as an advantage’ paradox; ‘For some academic
researchers, mental illness can be an advantage’ (The Guardian)
• 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) social identity I have often wished to disown
• Mental health service user involvement in academic research:
its potential for both emancipation and appropriation/cooptation/assimilation (Beresford, 2002)
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Service user involvement as
appropriation/assimilation
‘Service user involvement and participation
practices have become so incorporated that they
are best viewed as part of the overarching
system connecting psychiatric surveillance with
societal governance’ (Cooke and Kothari, 2001)
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Editorial - Asylum Toronto
‘The market-driven principles of mental health care under neo-liberalism have
never been more obvious. With patients situated as consumers in a mental
health system defined by concepts of risk, dominated by Big Pharma, and
driven by profit, there is little acknowledgement of rights let alone any
substantial resistance to a rapidly expanding mental health system. Worse,
many so-called ‘mental health activists’ have become consumed by
assimilationist strategies, opting to promote the idea that change can be
delivered from within, 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))15
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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Asylum - The magazine for democratic
psychiatry, Volume 20, Number 4, 2013
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Park House, North Manchester General Hospital
Willow Ward: The culmination of my mental health crisis (July 2008-June 2010)
Detained in Willow Ward under MHA (January – April 2009)
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Park House, NMGH- Entrance
I used to hate the sight of this entrance…
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Willow Ward – How my worst nightmare came true…
• When I was detained in hospital, I was treated as somebody with
diminished capacity and insight
• Me - As portrayed in my Care Records (January 2009 -April 2009):
“..dishevelled, retarded, highly agitated and characterised by
suicidal ideation, lethargic and far from mentally alert,
incontinent and odorous, occasionally subjected to physical
restraint. ..”
“Possibly needing ECT treatment due to treatment-resistant
severe psychotic depression”
• A huge blow to my confidence and a source of profound
feelings of humiliation and shame, as well as a source of a deep
sense of failure, unfairness/injustice and stigmatisation- all
acutely disempowering emotions
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Fearful Expression Induced By Electricity, Guillaume
Benjamin Amand Duchenne (de Boulogne)
Fear –Acute anxiety - Panic attacks
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Melancholy, Edvard Munch
Severe and enduring ‘psychotic depression’
Complete lack of motivation and interest in life
Acute hopelessness and persistent suicidal thoughts
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Terror, Alfred Kubin
Feeling terrified in Willow Ward
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Oppression, Alfred Kubin
Having my confidence crushed
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The Pursued One, Alfred Kubin
Persecutory anxieties – Paranoid thoughts – ‘Psychotic
symptoms’
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The Other Side, Alfred Kubin – Madness?
A novel that tells of a dream kingdom which becomes a
nightmare, of a journey to a mysterious city created deep in Asia,
which is also a journey to the depths of the subconscious – ‘a sort
of Baedeker (Guidebook) for those lands which are half-known to
us’, as Kubin himself called it.
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From Willow Ward back to
Academia…
How does one go from Willow Ward
back to Academia?
How does one go from such
harrowing states of mind back to
academic research?
How does one go from ‘the Other
Side’ back to Academia?
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Re-entering Academia: challenges I
• Low confidence, performance anxiety,
perfectionism/unrelenting standards, self-doubt
• Difficulties with delivering work on time and with team work;
harsh criticism
• Time management/reliability (being late for meetings)
• Colleagues’ lowered expectations of me; unwitting prejudices;
hard work to restore trust in my abilities
• Colleagues’ frustration and anger; caring, sensitive people
• What do colleagues-academic researchers see?
Somebody with a broken mind or the researcher?
• What do other service users see?
Because of my academic research background, not a bona fide
service user
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Re-entering Academia: challenges II
- As a result of my very severe and persistent depression, lasting a couple of years, I lost what had
always been a vital source of self-esteem and recognition for me, as well as an essential tool for
being an academic researcher-my capacity to excel intellectually/academically and think creatively
about complex phenomena. I could not think clearly, I could not concentrate and retain information,
I could not process language, I could not read and understand what I was reading, I could not be
intellectually creative. My head was constantly heavy and cloudy due to the potent medication I was
prescribed- especially when I was on copious amounts of it. I was off work for nearly 2 years and thus
away from opportunities for intellectual stimulation for far too long. Hence, re-entering academic
research involved re-learning and re-gaining all these vital cognitive skills and abilities that I had
lost.
- In my Service User Researcher role, I am expected to be constantly in touch with and use my
service user subjectivity, survivor knowledge and emotional (lived) experience as an instrument of
knowing and understanding- a particularly challenging task. Survivor knowledge, mad knowledge is
difficult, unsettling and troublesome knowledge. How can one bear continuous contact with the
inchoate (madness) and the discomfort and terror it generates? How can one continuously tolerate
the memory of the collapse of rationality and of the uncertainty of not knowing?
- For example, in the context of my Service User Research Fellow post in UCLan, I interviewed users of
mental health services about their experiences of independent mental health advocacy whilst in
compulsory treatment. The traumatic stories the interviewees told me brought back memories of
my own personal traumas and I often struggled in my efforts to achieve a balance between
showing empathy and maintaining my emotional boundaries, avoiding over-identification.
(From my reflexive research journal)
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Re-entering Academia: challenges III
• The wider neoliberal political and economic environment where
Universities operate in England (Sparkes, 2013)
-Government cuts in research funding
-Acutely competitive research labour market
-Pressures to deliver research outputs within tight timescales
• Structural and institutional barriers to meaningful mental health service
user researcher involvement
-Succession of temporary, very short-term and part-time research contracts;
financial uncertainty
-Obstacles to career progression (no lead researcher roles; no mental space for
writing for publication)
-Unemployment
-Lack of consistency in occupational health clearance practices for mental
health service user researchers – even within the same locality/University
Faculty (Manchester)
-Current changes in the wider institutional and policy context with regard to
Patient and Public Involvement in Research (i.e. changes in the NIHR
infrastructure/Clinical Research Networks; ‘dismantling’ of MHRN); loss of vital
sources of support and local knowledge? loss of longstanding relationships and
resources? uncertainty for mental health service user researchers regarding
critical sources of support to do with development needs?
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Re-entering Academia: challenges IV
• Career progression/career pathways and career development
support for mental health service user researchers
• How many mental health service user researchers get to be
Principal Investigators in research studies? The existence of
ceilings even for the most qualified and experienced service
user researchers
• How well are mental health service user researchers supported
and mentored in their jobs? What about the development,
training, support and employment needs of mental health
service user researchers?
• Job insecurity (very short contracts or just Honorary contracts)
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Re-entering Academia: challenges V
• Structural, institutional and relational barriers to meaningful
mental health service user involvement in academic research
• Internal/affective barriers to meaningful mental health service
user involvement in academic research – the most difficult to tackle
for me…
-Fear of relapse
-Having to fight critical and disempowering internalised messages
from mental health professionals; fighting self-stigma
‘What makes you think you can go from Willow Ward to a
research job? You were very ill with psychotic, treatment resistant depression, possibly needing ECT! It can happen
again!’
-Self-sabotage and survivor guilt
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Struggling with Ambivalence…
• Ambivalence - a core and often unsettling emotional
experience for me in the liminal space I inhabit as a mental
health service user researcher
• Profound ambivalence towards my latest mental health crisis,
my mental health service user identity and my mental health
service user researcher subjectivity/role itself (huge losses and
traumas/biographical disruption/bitterness and grief;
opportunities for personal growth and transformation)
• Wishing to disown and at the same time to hold on to my
mental health service user identity…
• ‘Madness and mad knowledge as a dangerous gift’ - the
knowledge stemming from my lived experience of mental
distress may be an asset, potentially positive and valuable for
mental health research BUT at the same time it is something
excruciatingly painful that I often wish I did not have!
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Ambivalence (Recovery ©Daniel Saul-Making Waves)
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Addressing the barriers – Some reflections on
what needs to change in HE contexts
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•
•
•
•
•
•
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Flexible allocation of work tasks based on an understanding of my difficulties
Accommodating periods when my productivity lapsed due to health
difficulties (physical and mental health difficulties)
Building on my strengths - tasks that would not set me to 'fail' (to not deliver) gradual undertaking of more tasks and responsibilities on my part as my
confidence in my abilities grew
Creating space (time and mental space) to work collaboratively
On-going recognition and appreciation of my strengths and contribution (by
my line manager and colleagues)
My own drive and determination to develop, change and succeed (To prove
the medics wrong…)
Support and adjustments have been critically important for the development
of my confidence in my abilities
Feeling ‘included’ in the research team I am working with
• BUT challenges and barriers remain…an ongoing battle…
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Some hard 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 of Academia?
• How to do collaborative, relational and participatory
work in Academia when individual success and
competition dominate?
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Epilogue: Ambivalence
Dina: there are people at Start who are brilliant in terms of their talents, and
that’s including myself…but because of the mental health stuff they’re
compromised in so many areas of their lives…they can’t work, they rely on
heavy medication, they can’t travel in public transport, they’re restricted
because of their mental health problems…I suppose I feel some bitterness
around that because I feel it’s so unfair…and I think I feel that about myself as
well…how much I’ve had to struggle to regain my confidence…it’s just twice as
hard if you’ve had that load of the mental health thing…I feel privileged that
I’ve met these people but there’s a part of me that just feels bitter about the
mental health thing…for me and for them I think…when I see how much people
are compromised by it, whereas they’ve got amazing potential and talents…I
don’t know, I’m not sure about it …whether having had mental health problems
has offered me opportunities for change and growth…I have had 20 years of
psychotherapy which definitely enabled a great deal of personal development
and transformation for me but I often wonder about the huge cost of my 'posttraumatic growth‘…
Reflexive notes from therapy session (June 2011)
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References
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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 and
Society, 1:2, 95-105
Cooke, B. and Kothari, U. (2001) Participation: the new tyranny?, London, Zed Books
Costa et al. (2012) ‘Recovering our Stories: A Small Act of Resistance’, Studies in Social Science, Vol. 6, Issue 1,
85-101
Cresswell, M. and Spandler, H. (2013) ‘The Engaged Academic: Academic Intellectuals and the Psychiatric
Survivor Movement’, Social Movement Studies: Journal of Social, Cultural and Political Protest, 12:2, 138-154
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-bulletinthe-bjp-the-politics-of-first-person-accounts). Accessed 19 February 2014
Moriarty, J. (2013) ‘Leaving the blood in: Experiences with an autoethnographic doctoral thesis’ in Short, N. P.,
Turner, L. and Grant, A. (Eds.) Contemporary British Autoethnography, Rotterdam, Sense Publishers
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. and 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
Sparkes, A. (2013) ‘Qualitative research in sport, exercise and health in the era of neoliberalism, audit and New
Public Management: understanding the conditions for the (im)possibilities of a new paradigm dialogue’ ,
Qualitative Research in Sport, Exercise and Health, Vo. 5, No. 3, 440-459
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
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Contact Me!
Dr Dina Poursanidou
Honorary Research
Associate/Service User
Researcher
University of Manchester
Centre for Women's Mental
Health
Institute of Brain, Behaviour
and Mental Health
Manchester M13 9PL
Email:konstantina.poursanidou
@manchester.ac.uk
Mobile: 0044 (0) 7792358092
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