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 two-fold. 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.”
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.
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 im personal 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 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 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.