A Service User's Story - the Narrative Edge
An account of my own illness and the resulting implications for research
and teaching in health and social work and beyond.
I will reveal a narrative journey from despair and suffering to recovery and
empowerment, including concomitant personal analogy to help to describe the
indescribable. Recounting my storytelling and lecturing in universities, I will
highlight the immense power emotional discourse lends to the learning process.
Provision of a service user/survivor as expert by experience - as narrator,
provides added value to the often more discursive professional teaching process.
The authentic user's voice of experience enters into the narrative tradition of
passing on wisdom through the spoken word and from the heart, for added
impact.
Speakers of their own stories, engaged in the learning of others, benefit from
being heard. Centres of excellence provide a listening audience to an otherwise
unheard experiential knowledge base; thereby inviting a previously silent and
marginalized voice into the centre of academic discourse. The outcome is twofold. I hope to illustrate how the pedagogic and therapeutic double-edged sword
of employing the user narrative decapitates stigma, exclusion and self-doubt in
one fell swoop. The spoken-me and lately the written-me has revealed,
(serendipitously for me anyway), a unique learning experience for students and
professionals as well as a process of self-affirmation for me.
As Steve Sanfield 'On the Master of Storytelling' writes: "It is listening to your
own inner voice, and then putting your heart and soul into every story"
Indeed, my impetus for engaging in the work I do is to “put the humanity back
into professionalism”, (Holley, 2007). As a vulnerable person, I was left in the
hands of professionals; some more human than others. Those professionals
making a positive impact upon my own recovery journey were unafraid to listen
to their own inner voice. They were in tune with their own emotions; their own
humanity. Such emotionally intelligent individuals knew the power of a Shared
Humanness, (Holley, 2007) in interactions with clients or patients alike.
Goleman’s work on Emotional Intelligence, (Goleman, 1996), and my own
experience are the inspiration for this model. My expertise comes from a lived
experience of mental distress and interactions with professionals from various
disciplines over many years. Service users and survivors are known in the trade
as experts by experience and I subscribe to the view of Steve Sanfield, (Estes,
1998), who:
“…cannot emphasize enough that the healing disciplines require training with
one who knows the way and the ways, one who has unequivocally lived it - and
for life.”
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This absolutely applies to the disciplines of Mental Health Nursing and Social
Work, in which I am involved, and the related areas of psychiatry and
psychology. The employment of mental health service users and survivors within
the National Health Service is already being piloted in certain enlightened Trusts,
but it needs to be the norm nationwide. Many Mental Health Trusts would do well
to introduce experts by experience as trainers for its frontline workers within
assertive outreach or home treatment teams, for example.
In fact, I see huge gaps in terms of staff training around communication skills
concerning emotional care and therapeutic interactions with vulnerable people.
Trusts, and similar public services, despite attempts at modernization, tend to
uphold a paternalistic culture towards service users as experts by experience.
These organizations will be left behind in best practice by the leaders by example
that recognize the value of this newfound expert knowledge base and champion
the employment of service users. The St George’s model is leading by example
in London.
The anachronistic medical model is still adhered to by many professionals. In my
work as service user educator and recently survivor educator, (as is now another
label I have acquired), I endeavor to emphasize, via my subjective approach, that
although we are all individuals, we all share the commonality of existence of what
it is to be human. From my journey; my odyssey even, from victim to survivor, I
have developed the aforementioned Shared Humanness model. It illustrates how
the emotional intelligence and appropriate self disclosure from the professional
work hand in hand with connecting with people, thereby leveling the playing field
between the service provider and the service user. Such practice results in a
professionalism that is based on rapport and engagement rather than on power
and containment.
Shared humanness is, by its very nature, a genuinely interdisciplinary tool. I
explain through my narrative, that all professionals ;( whatever their disciplines,
from psychiatry to social work), are not a different species to those they care for.
In fact, everyone is on the mental health continuum. In my opinion, this so called
mental ‘illness’ is unequivocally part and parcel of the human condition, and less
of an abnormality!
The quality of being human is at the heart of my narrative; my story from the
heart. Its lifeblood - its animating force, courses through the interactions between
one human being and another human being; regardless of class, status, whether
they are male or female, ‘ill’ or well. It highlights the sharing of humanity between
the person behind the professional, and the person behind the illness. It is
important that the service user and the professional have an egalitarian
relationship based on collaboration rather than coercion. If both have the same
goal – the service user’s recovery – then working as a team is not just desirable
but essential. It is not about whether to stand behind or before each other; it is
about standing but side by side.
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The role of the subjective experience is appropriate here, as I am speaking from
my own lived experience of anxiety and despair, (or clinical depression as the
Medical Model would have it). I, alongside fellow experts by experience, have a
personal perspective, which gives us the authenticity or authority that is our
‘unique selling point’.
I relate my experiences of being treated well, (best practice), as well as my bad
experiences, but I do so in a solution focused rather than a recriminatory way. It
is the combination of personal and impersonal interactions I have experienced
with professionals that is at the heart of my teaching practice. Teaching sessions
by speakers of their own stories provide an exclusive learning opportunity for
professionals and future professionals alike; to be up close and personable to
their subject and a unique chance to “rub shoulders with the experts”, (Holley,
2007). One enlightened practice educator and expert by experience reminded
me that:
“People will forget what you said. People will forget what you did. But people will
never forget the way you made them feel.” (Taylor, 2006).
It is on such a basis that I emphasize how, as experts by experience, we have
the narrative edge. For example, in Camus’ play ‘The Plague’, he wrote of his
character’s awe of the expert: “‘Who taught you all this, Doctor?’ The reply came
promptly: ‘suffering’”.
It is such a direct experience of suffering that is especially relevant towards an
empathic understanding of mental distress.
The most integral part of any session I give to students or professionals is the
telling of my story, the main themes of which are shared humanness and
alienation: the ‘Them and Us’ mentality so often present among the service user
and the professional, the nurse and the patient, the care provider and the cared
for. During my teaching sessions, I prefer to eliminate any sense of didacticism;
of teacher at front, by arranging people’s seating to a traditional storytelling circle.
Here, the storyteller is in among the listeners; with the emphasis on a sense of
primeval fellowship not hierarchy, and where the warmth is no longer supplied by
the focal point of a tribal fire but by the all encompassing warmth of shared
emotion.
In this way, I can start to really engage my students and the student/service user
dynamic becomes apparent as I disclose my intimate emotions, thus leading
them, by association, spontaneously, into their own emotional landscapes.
Inherent in this method is a very collaborative approach to learning. Even in a
classroom situation, before going out into practice, they have already begun to
engage in a process of sharing humanity, whether they yet realize it or not.
And so I tell my story. Recounting my experiences is often akin to trying to
“describe the indescribable” (Holley, 2007), and the process lends itself easily to
allegory, analogy and the use of metaphor. I sometimes exploit the hypnotic
rhythm, of the opening line of children’s storytelling tradition to engage my
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audience further into the trance-like state that is most receptive to emotions.
Thus, the affective domain is more naturally entered into so that truly “effective
affective learning” (SEAL) ensues. Such an audience response to my narrative
enables them to engage with a reflective and interactive sharing of their own
humanity.
Naturally, a student’s initial response can be one of discomfort, but I try to
prepare them by talking through my mounting emotions as I recount distressing
memories by using a de-escalating Cognitive Behavioral Therapy, (CBT),
technique. The emotion generated by me is verbally ‘honoured’ and I explain to
concerned onlookers how I then have to ‘disassociate’ myself from this emotion
as I have a message to impart, and then I am fine and able to continue.
This process provides an all too rare opportunity of glimpsing the person behind
the professional and of engaging them further into truly reflective practice. In
addition, there is the powerful but subliminal message that service users can
recover and regain control over their life. In my experience, rather than alienating
my listeners with uncomfortable emotions, the audience is held by a common
thread of humanity; a thread that quietly and gently binds our hearts, however
ephemerally, purely from the universal nature of human emotion.
Our narrative edge, as visiting lecturers, as service user educators, is that we are
not just engaged in the process of lecturing. The real teaching and learning
experience comes via the narrative of emotions. It becomes an even more
educative process, as students are not just benefiting by hearing my words
around mental distress, but also by hearing my silences, and by seeing the map
of emotional reactions on my face. The speaker/listener dynamic also plays a
unique part in bringing the student closer to seeing things through my eyes and
possibly to relate more easily to my experience and perspective. My story would
unfold as follows….
‘Once upon a time there was a girl called Tracey who had lost her way and
found, herself, [not unlike Dorothy in the classic film ‘The Wizard of Oz’], in a
deep dark wood full of “lions and tigers and bears. Oh my!”……’
However, my escape route was not via ruby slippers but by becoming my own
therapist via CBT.
I recount my journey from victim to survivor, of the mental health services, as well
as of mental suffering; explaining that my expertise came from not just suffering
alone but from how I was made to feel at the hands of ‘professionals’. I impart
how I felt shackled by stigma, by an increasing sense of exclusion, together with
the intrusive paternalism of the medical approach and by the ever-tightening
screw of self-doubt. Incidentally, I am including in this list my experiences as a
woman, as a single mother and finally as being a Mental Health service user.
At the start I had no insight that I was becoming my own expert by experience.
However, the victim mentality I have witnessed being encouraged by the medical
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model in hospital, was soon abandoned by me as I exited hospital and entered
into a more humane relationship with my key worker, Trish. It is from my
interactions with such emotionally intelligent professionals, who practise what
Goleman, terms Humane Medicine and Emotional Care, (Goleman, 1996), that I
have realized what an impact these wonderful individuals have on my recovery
potential. Putting the humanity back into professionalism is the impetus for my
work as a survivor educator.
When I recount my story, the relationship between narrator and audience is one
of integrity, of inclusivity and of acceptance. My story, like the recovery process
itself, is not linear. It is not an ordered account of connected events and
experiences but a depiction of disordered but connected thoughts, feelings and
emotions. I recount experiences at random to illustrate what I need to convey
depending on the dynamics of the audience at the time. My story and teaching is
enriched over time as I become more insightful and retrospective – this only adds
to the impact and strength that is our narrative edge.
It is often the gaps that the established theoretical models of the Health Sciences
leave, that are filled by the service user/survivor experience. For example, the
textbooks of nursing students always seem to place the emphasis more on
getting the patient functioning. I have found myself reminding students and tutors
alike that it is also about how we are feeling. Similarly, it is not just about relief of
symptoms but about communicating a sense of HOPE. Mental health
professionals who make a difference are acting as temporary custodians of our
misplaced sense of hope and believe in us even if we have no self belief of our
own.
Our unique selling point as educators is that we are not teaching from some
secondhand textbook theory. Our expertise comes ‘straight from the horse’s
mouth’; our own lived experience lends us authority. We have the inside story
and we share our knowledge to the advantage of all, particularly the vulnerable.
Service user wisdom and quotations from experiential expertise are taken from
our own narratives – not just from thought or the cognitive domain – but from
narratives of emotion; of feeling.
Such narratives have a great impact on students and professionals alike; just as
we want them to make a connection with us, so are we connecting with them.
The rather cold and grey narrative landscape of ‘professional speak’ around
mental health becomes punctuated with warm splashes of local colour, so that a
somewhat calculated jargonistic terminology is ousted by the idiosyncratic
phrases, vocabulary and metaphor of native speakers more akin to the human
experience that is mental health.
It concerns the “emotional mind’s special symbolic modes”, in Goleman’s terms,
or the “language of the heart” (Goleman, 1996).The only authentic language that
can describe the indescribable, (Holley, 2007), and illustrate the struggle with
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mental distress is that of the native speaker of despair and recovery. There is no
sanitizing of raw emotion by clinical terminology and objectivity is replaced by
subjectivity.
The Advocacy in Action group from Nottingham, for example, have successfully
included previously marginalised storytellers who effectively demonstrate that it is
not always the eloquent few who get heard and who can also shed light on what
it is to be human. The ability to enlighten the caring professions requires an
understanding of the significance of revealing one’s own humanity and of not
dressing it up in fancy words. In my view, the authentic human voice is priceless.
We are speakers of our own stories and we speak from Practice not Theory and
it is our own lived experience. It is an opportunity for the traditionally ‘spoken to’
to become the ‘speaker of’.
One pseudo-anonymous individual, Kevin, from the aforementioned Nottingham
experience, describes such a transformation brilliantly:
“And I was a brilliant presenter on my life because it belonged to me and no-one
else. And the story helped students become better social workers.”
Incidentally, he did actually have a choice of anonymity under the guise of
confidentiality and he had a sense of ownership and recognition of his own
expertise. Ownership and choice are important therapeutic outcomes for service
users as narrative practitioners.
When I engage with storytelling; whether lecturing in universities or training
sessions with police, housing associations, or advocates, (Spectrum, 2007), I
recount a narrative journey of my own take on a personal journey from despair
and suffering to empowerment and recovery. One fellow colleague reminded me
that it is a journey of discovery rather than recovery. I, myself, have discovered
a whole new self and, in the words of Simon Heyes recovery is not about;
“returning to how things used to be. It’s about finding a better, healthier and more
sustainable life”, (Heyes, 2007). I have achieved this via meaningful work as an
educator, my key worker and a brilliant psychologist, who empowered me to
become my own therapist via CBT. I speak from practice, i.e., from my lived
experience, encouraging a culture for partnership working and collaborative
practice learning with the authentic voice of the expert by experience.
As a narrative practitioner I am promoting interdisciplinary learning and teaching,
where the service user’s story is integral to the process. Centres of excellence,
like the University of Birmingham’s Centre of Excellence in Interdisciplinary
Mental Health, (CEIMH), are leading by example and demonstrate best practice
for empowered user involvement.
Ownership of such expertise by users and survivors is vital as we no longer have
endure being ‘done to’, but are the ‘doers of’, whether it be in terms of our own
recovery/discovery, or as user educators, or even as user academics. It is an
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innovative professionalism, viewed as subversive by some, and welcomed by
others as complimentary; not instead of, but as well as. It is a humane
professionalism; a natural catalyst for interdisciplinary or interprofessional
working for the benefit of all.
It is not about personal agendas but an embodied use of self as part of the
educative process to ensure better services. I attended a conference aptly
entitled: ‘Broadening Our Horizons’, which introduced me to people who are
turning the ‘I’ knowledge into ‘we’ knowledge, by training users with initiatives like
Ex-in (van Haaster, 2007).
It is the knowledge of the ‘inside story’, from the ‘insider’, that should be the
predominant focus. Sharing one’s human experience is a narrative of the psyche
and of the soul. It is not about political correctness but, as Sanfield explains:
“It is not trying to please anybody. It is listening to your own inner voice, and then
putting your heart and soul into every story”
(Estes, 1998).
When I am trying to put across my message and my emotions come bubbling up
to the surface and my chin begins to wobble, I automatically make a connection
with my audience, as fellow humans. It is an organically interactive learning
process, as the emotional response of the speaker causes an emotional
response of shared humanness from the audience.
Having students, including professionals, interacting with you, as a person,
allows them to really engage with some of the issues my story highlights and this
usually involves a sense of shared understanding between us. This service
user/student dynamic emphasizes the fact that I am not just an exhibit but a
person like them. One of the most serendipitous outcomes I have experienced as
a user-educator is discovering “the person in the professional”, (Tang, 2007), and
the realization that professionals can be vulnerable too.
Furthermore, professionals can maintain their own wellbeing not just through
professional boundaries and objectivity, but through discovering their own
emotional landscapes with the subjective experience of the user-educator
illuminating the way. Such emotional learning via classroom encounters with
users should form an integral role for a more intensive training of interpersonal
skills where the emphasis is on an insight into shared humanness and emotional
intelligence.
In my view, there is a deficit of emotionally competent professionals which needs
to be addressed. Training by users around emotional competence will lead to a
more confident, healthy workforce. It will create a workforce which favours
injecting an engaging sense of shared humanness, rather than just ‘medicine’
into the patient or client.
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The student’s encounter with the service user becomes a mutually therapeutic
interaction. The impact I have on students always surprises me and how fulfilling
it is when my experience of mental distress, (notice no diagnostic labeling), has
meaning not just for me, but for students as future practitioners. One student
nurse about to enter the mental health branch work placement wrote after one of
my teaching sessions:
“It’s very difficult to actually describe how the session made me feel, other than
that it has made me realize that people with mental health issues still have
feelings and thoughts, it’s easy to presume that their specific illnesses ‘mask’
these feelings.” (Holley 2007).
The pedagogic benefits of telling our story are many, and some I have already
touched upon. Not least, is having an interactive real life storyteller in the
classroom. It is the added impact of the visual, verbal and emotional experience;
sharing each other’s humanity. Service user and survivors’ stories signpost the
cognitive domain ;( knowledge and thinking), to the affective domain; (feeling and
emotion). There are applications for reflective practice and Goleman’s Self
Science Curriculum, (Goleman, 1996).
Such applications can be generated by user insight and experience about rapport
building and empathy and trust. These themes are inherent in the Shared
Humanness model, where the judicial use of appropriate self disclosure within
professional boundaries plays an important part.
Furthermore, students and professionals can witness the transformation of users
as victims, to users as educators – thereby debunking the ‘them and us’ culture
they may encounter in professional practice. Kevin, from the Nottingham
experience, illustrates this perfectly, when describing his experience:
“I enjoyed the impact that my story had on students. I felt I was helping them to
be better supporters to vulnerable people. I was able to build on my ‘people skills’
and my teaching abilities. I found I built myself up at the same time.”
Kevin clearly demonstrates what a mutually beneficial experience it is.
As a speaker at the European Interprofessional Education Network conference in
Krakow, (EIPEN, 2007), I became aware of the truly inter-professional nature of
the user perspective for bringing humanity back into professionalism.
Professionals may be from different disciplines but they are from the same
species – human beings. Emotional insight and shared humanness are vital for
successful collaborative working, and place user-educators at the forefront of
best practice within education.
Leaders by example view users as experts in our own right, ideal candidates as
educators, and wholeheartedly promote the user academic and the recognition
and development of service user/survivor models and theories. Centres of
Excellence in Teaching and Learning, (CETL’s), like CEIMH, recognize and
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celebrate users’ ownership of knowledge by encouraging academic referencing
as well as developing emancipatory and user/survivor led research.
I have recently been invited to contribute towards a Mental Health textbook,
whereby I give my perspective on case studies of people on film describing their
mental distress experiences, as well as my thoughts on what makes a good
mental health nurse, (Holley, 2007). This initiative is most welcome, however, I
eagerly await the day when indicative, and indeed, prerequisite reading for
students includes textbooks written by user/survivors. The time when users are
employed by every university as team members integral to the planning,
development and marking of mental health modules in health and social work is
long overdue.
Excellence in teaching initiatives is demonstrated by the development of cutting
edge film projects by the user led Suretech group, showcasing user narratives as
an educative tool for health students and professionals and based at CEIMH. A
survivor initiative, (Tathem, 2007), Suretech involves users in the process of
filming, editing, scriptwriting and acting scenarios based on user narratives.
Happily, there is now an emerging shift from a traditionally valued scientific
objectivity, towards a more enlightened post-modernist acknowledgement of the
value of subjectivity. It is a subjecvity with emotional discourse at its heart.
Perhaps this apparent sea change will open up the floodgates and allow for more
progressive models, such as the social and person-centred models, along with
the unexplored waters of service user models and theory, to ‘drown out’ the
antiquated medical model.
However, we service user-educators as ‘end users' cannot escape “the dominant
discourse of psychiatry”, (Tew & Gould, et al.) We have to be fluent in two
languages – our own vital and raw language of human emotion, (from our own
experiential knowledge base); and the clinical language of the medical model.
This ‘bi-lingualism’ brings added value to the user educator bestowing us with a
“more complex understanding of Mental Health and Mental Health services than
those speaking from more than one position”, (Tew, Gould, et al., 2006).
CETL’s can provide a truly supportive workplace or voluntary arena for the
involvement of users’ narratives. Such organizations would be in line with
guidelines written for users by users. There are many examples of general
guidelines. However, I have written user involvement guidelines specifically for
the user-members of a Focus Group for Social Work (Holley, 2007), for example,
based upon the individual needs of this particular group.
The Tidal Model project for Birmingham and Solihull Mental Health NHS Trust,
(Gordon, 2004), with the narrative of the inpatient at its heart uses a tidal
metaphor to illustrate the ebb and flow of the interaction between nurse and
professional. It highlights the importance of personal bespoke healing narratives
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for patients, where the patient is at the helm. I have had the privilege of being
involved in the filming of user narratives, where our comments and feelings about
this project have been filmed as a training resource for qualified nurses.
Hopefully, the tide has turned towards a new respect from politicians and
professionals for a new breed of empowered service users. We now have a more
informed public and the Expert Patient Programme, with user-delivered training.
Students, professionals and the general public can witness at first hand the
movement of a once marginalized voice at the centre of academic discourse.
True service user/survivor, (and carer), involvement is breaking down barriers of
stigma, tokenism and social exclusion, although, like all cultural change, it is a
slow process.
Harbingers of hope and best practice come in the form of CETL’s, the
Government’s Reward and Recognition (DH, 2006) guidelines, and the
recommendations for “exemplar employers”, (SCMH,2006), for example.
I will continue to uphold our right for ownership of expertise not exploitation, for
the choice between anonymity and confidentiality or ownership and recognition.
Mental health awareness and the involvement of users in paid work as trainers
and experts to educate people about mental distress is vital for the wellbeing of a
democratic and civilized society. User knowledge should also be integral to the
planning and delivery of health services to level the playing field between service
user and professional.
When submitting my abstract for this paper I felt compelled to state my eligibility:
although I was a practising educator – a narrative practitioner, I felt compromised
not only by my self- esteem issues, (the legacy of depression), but by the almost
ubiquitous stigma and prejudice around user involvement. I need not have
worried, as service user narratives speak for themselves within such supportive
and inclusive listening arenas. As a result, this once downtrodden depressive has
reaffirmed her sense of worth as a human being through engaging in meaningful
work, via the therapeutic vehicle of the healing narrative. Such a narrative was
my experience within CBT, with an excellent therapist.
And so as my story unfolds, a narrative of despair becomes a narrative of selfdisclosure, of self-revelation and of self-affirmation, even as I press these keys
on my computer. Finally, I have a narrative of hope and a narrative of discovery!
Sanfield (Estes, 1998) writes:
“Having lived a particular story for years or a lifetime, that story would become
part of the teller’s psyche, and the teller would tell from ‘inside’ the story”.
However, I have discovered the ability to see from ‘outside’ of my story as well,
from the impact my story has on my listeners as we connect to a shared
humanity. The words of John Brian validate my experience as user-educator:
“When people who are not used to speaking out are heard by people who are not
used to listening, then real changes can be made” (Clark & Glynn,2006).
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I now stand up, not only for the valiant cause of user involvement becoming the
norm, but also for myself. It is cause for a celebration of the ‘spoken to’ becoming
the ‘speaker of’, and of the disempowered becoming empowered.
I used to share my story in a timid manner and with a voice lacking in conviction
that what I was saying had any validity. During my recovery I have discovered a
new me: a person of conviction. I am therefore empowered to convey the
importance of my personal inner narrative. I had never deemed it worthy of
utterance and certainly would not record it on paper in black and white. CBT
enabled me to honour my emotional suffering and to realize my worth.
The awareness of Tracey, as the teller of her own story, has enabled her to
become the writer, or author, of her own story; of her own life, and I want to be a
writer who can:
“…say the unsayable, speak the unspeakable and ask difficult questions”.
(Rushdie, 1995)
I am finding this process a truly life-affirming experience, which is exhilarating for
someone who had previously just wanted to close her eyes and never wake up.
However, as with the best of stories, the heroine does wake up, and rather than
being rescued by someone else, she rescues herself.
4886 words
Tracey Lynne Holley September 2007
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