Language, Stigma and Stories; their role in Mental Health and Wellbeing

Linden Lynn, Recovery Devon, 2010

Language matters. Our perceptions and our expectations are shaped by the words that we hear and the words that we use. They can create a framework that underpins and structures our lives. In putting my thoughts on paper, I am aware that the words Ive chosen in exploring these issues will inevitably misrepresent some aspects. In pursuing my perspective, I am leaving aside other positions and pathways. My stance here rests on the perspective of the person overcoming mental distress. It concerns how people with histories of mental illness, see themselves and how they are seen through both a diagnostic lens, and by the wider society and what some of the tensions are. I believe that if we are optimistic and challenging, we can use language to support an active and progressive viewpoint. Seeing people as people first, is key to the recovery movement but personfirst language has yet to be universally adopted. This paper is largely a plea for that. What we say and how we act, become part of who we are. What others say about us, colours our viewpoint. These are social constructs and they can change as we live our lives. The words people choose help to describe or obscure particular aspects of reality. The map is not the territory. Thus language matters. This is true for every-one in our communities. It is especially important for people who have had to overcome differences or difficulties of some sort, particularly those who struggle to manage their mental/emotional health and wellbeing. Logically, we know that our mental health can vary throughout life and that mental ill health can occur to any-one, at any time. Yet many in the world around us, behave as though we are foreign or other, should we experience disturbing mental ill health. The language that people use about emotional distress can display this feeling of difference, or it can show compassion. It can paint a picture of hope or of rejection and exclusion, or it can fall somewhere in between. People who experience mental distress are very sensitive to the world. I often think that we are like the canaries in the coal mines. Here to detect when the space or place is becoming toxic. We live today with the pressure of modern lifestyles, often geographically isolated from family, with much of our energies focussed on work and careers, or without employment in a world where work largely defines people. Within this world there is too little time or too much time for reflection and the energy to sustain relationships can be reduced. The mass media celebrates perfectionism, material gain and celebrity culture and undervalues commitment and loyalty. At the same time our spiritual dimension is undernourished. Our work can become our vocation or a chore. For the jobless the void can marginalise. Either way we are surrounded by imbalance. Is it any wonder that people experience emotional distress? This is not to blame entirely the world in which we live, for personal mental illness. This would be too simple. There are those who thrive on the competition, the challenge and the action and others who fold under its burden. Mental health and mental illness are complex issues. Dr Gwen Adshead, Consultant Forensic Psychotherapist, spoke recently on Radio 4. Her views were memorable. As a psychiatrist working at Broadmoor Hospital, she had compelling reasons to consider the nature of negative emotions
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and insanity. One image that she painted was that of the four number bicycle lock. Many people, she said, could walk around for a long time with three numbers in line. For the lock to open and things to go seriously wrong, all four numbers would need to be lined up. This image helps to explain the tipping point for people in distress and why we lose so many along the way, because people can seem to be coping when in reality, they are very vulnerable. Severe mental illness can be a potentially fatal experience. Unlike those in Broadmoor, the vast majority of people experiencing mental distress turn against themselves. It is like an auto immune condition eating away at our health. As some-one who has experience of a mood disorder and has to work at keeping my mood upbeat and stable, I often find myself reflecting on these issues. Why Language Matters Challenging The Single Story The importance of recovery focussed language and how it affects attitudes was one of the key topics identified by Recovery Devon, in several workshops held in 2009. These workshops followed visits to Devon in 2008 by Mary OHagan, Commissioner for Mental Health for New Zealand, and Mike Slade, Consultant Clinical Psychologist in Rehabilitation, Maudsley Hospital, who were both commissioned to report on the organisational progress toward recovery working across Devon. The language people use matters because it conveys both hidden and explicit messages. We are all seen in many different ways and we are often seen through a partial lens to suit a particular relationship or connection. Our sense of personal identity and how we see ourselves can affect whether or not we remain stuck when things go wrong. Our perceptions of our self are inevitably partly mirrors of the way others perceive and describe us. This affects our ability to recover and to fulfil our potential. All of us, having lived through many varied, good and bad experiences, have many stories to tell. I recently came across the work of Chimamanda Adichie on TED1. Her talk on The Danger of the Single Story resonated with me, as I imagine it does with many who have found themselves amongst the minority at different times. Chimamanda Adichie describes her Nigerian upbringing, and her move to America, and how she has had to overcome western attitudes and a partial knowledge of life on the African continent. She identifies the way a single story is built in the minds of others. She says, To create a single story, show a people as one thing, as only one thing, over and over again and that is what they become'. The examples she provides, demonstrate how type casting and stereotypes develop. Her argument reminds us of the danger of the single response that people with mental health problems frequently experience from others and feel towards themselves. Societal intolerance and lack of support can lead to increased distress, when people are stigmatised as stereotypes, often through judgemental responses and insensitive remarks, because of incorrect and partial understanding. Chimamanda also stresses that it impossible to talk about the single story, without talking about power. She talks about the way stories are told, and how this depends on power dynamics. She says,

How they are told, who tells them, when they are told, how many stories are told, are really dependent on power. Power is the ability not just to tell the story of another person, but to make it the definitive story of another person.
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http://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story.html

This quote creates a further resonance for those who struggle to overcome prejudice around mental health issues. This TED talk, points to the right of people to express their own story in their own words. Finally, Chimamanda emphasises that stories need not be a single story. She says, "Stories have been used to dispossess and malign, but stories can also be used to

empower and to humanize."

Who Tells These Stories and What We Tell Ourselves We tell ourselves different stories according to our connection or disconnection to our integration or disintegration. Our stories relate to our connectedness to the here and now, and to our hopes for the future; to good sensations or to the spinning chaos of time distortion, isolation and dysfunction. Each of these can be a partial truth, like having too much to drink, with slurred speech and wobbly walks. Probably most adults have been there at least once in their life: but hopefully, it is not their only mode of being! When we are able to find the inner resources to recognise our own strengths and can again become future focussed, then we can start to challenge the temptation to hide, shield, or defend ourselves behind what can feel to be the disabling shame of mental illness. So how we tell our stories and how others share them, and who tells and how they are told, can alter our perceptions and those of others. Personal stories of recovery are precious. Their value as stories lies in their capacity to transform, to show people as complex, living, changing beings and they can challenge stigma.
Language, Recovery Principles and Changing Power Relations

As an enthusiast of the Devon Partnership Trust document Putting Recovery at the Heart of All We Do, I support the focus on mutual respect and the values and principles that are its basis. The document enables people who provide services and those receiving help, to each better identify their roles and responsibilities when moving toward recovery focussed support and language. These Daisy Pages make clear much of the confusion that arises over what the practical implications are, of a recovery focus and how to make real, the principles that underlie a recovery approach. The document has been described as a conceptual compass. It helps to steer the way through many untold complications about delivery of services to support people with very real needs. It also reasserts the importance of supportive relationships, trust and reflective practices. Implicit within it too, is the hope that those receiving services, will feel encouraged to work in respectful and considered ways with those who support them, as far as they are able within their own health circumstances. So this advisory leaflet encapsulates a humanistic approach for workers within the health service and points a direction for those of us who receive support. It specifically states:

Words are important. The language we use and the stories we tell have great significance to all involved. They can carry a sense of hope and possibility, or be associated with a sense of pessimism and low expectations, both of which can influence personal outcomes.
This leads me to welcome many of the changes within the New Horizons document, which talks both of mental health and wellbeing. This focus on a move beyond mental health toward living well independent of mental health services, where appropriate, is a healthy reminder that recovery is possible. It helps to create the idea of wellness as an active aim and way of living. I welcome the

proposal of a multi-agency approach to tackle the root causes of mental ill health, if this has the necessary teeth and resources to challenge poverty and exclusion. There is a shift toward we rather than them and compared to previous policy, the document talks more about individuals, and adults or children, seeing these as people experiencing mental distress. But I regret that it still retains the phrase, service user. I along with many, hold the view that people who use services are people first. This hints at a fuller picture and a dynamic relationship with those who provide services. It feels demeaning in some way, to be seen in a singular way, only as a user of services, rather than a person living their life and striving to overcome the hurdles within it. The Recovery movement seeks to see people as separate from any illness, and more than any enduring and frustrating disquiet within the mind. Challenging Stigma - People First The words people use, and the respect and dignity with which they convey messages, can make a person feel hopeful or they can hinder progress. So we need to be more vociferous about the terminology used and the attitudes to language adopted by ourselves and others. I defend my right to be seen as a person first and foremost and remain uncomfortable with naming /labelling which sees me as a service user, manic depressive or many other such epithets. One disadvantage with the term 'service user' is that it can encourage a static and passive view of the individual, some-one who has a specific and ongoing relationship with mental health provision. It is a term that could potentially hold that person in a dependent role and it also focuses the views of people around them on their link to services. It describes a relationship now and gives no sense of movement forward from the position of being a passive consumer of services, towards gaining or regaining a sense of agency, identity and empowerment. It could be argued that as long as a person is identified, or identifies themselves as a 'service user', that person is less likely to see themselves in a changing relationship with services and thus may be less likely to develop an active personal and social role, moving beyond the 'catastrophic effects of mental illness'. Having said this, I am immediately aware that this is an observation, from a particular position on a recovery journey. There are times when the only option is to pause, to stand still, to doggy paddle in the water, just to stay afloat: but there also comes a time on a recovery path, where hope returns and a new relationship with oneself, with services and ones community develops. This is a sensitive moment, where self doubt is still a pressing problem and where nurturing and feeling valued are cardinal. Language and attitudes have a high priority. While people do adopt different roles in different circumstances, the identity of 'having a mental illness' or 'being a service user' can all too easily feed the fear of returning to the challenging world of roles and responsibilities. Thus it can become a hindrance and something which pushes out other, more positive roles. On the other hand, I recognise that there are times when accessing services and appropriate medication, can be a life saver. It seems that transitions from one set of circumstances to another, can be times of increased, self doubt and identity difficulties. These need careful planning and consideration. How often do we hear that some-one loses their struggle with illness, just when the people around them thought they were getting better? When we look beyond the label and become aware of people as complex beings, in a way it complicates things. It is easier said than done to ask organisations to respond to individual needs. It is a chicken and egg situation. There are no certainties, especially if a person is severely unwell and unable to interact. If as people overcoming distress, we can begin to see ourselves with a future,

then people around us may re-engage. Though, this hinges on mutual respect, dialogue, support and supporters. Tolerance and respect for a persons sense of equality, dignity, self-worth and ambition can encourage a person overcoming mental distress, to take new steps, engage with new learning, new work, etc. There is a need to be attuned to the individuals robustness and resilience. The strong throw off inappropriate language like water of a ducks back. So perhaps we need to give more time to development of resilience. Language, Empowerment and Identity Like Chimamanda Adichie, I believe that each persons story is important and that the language that is used, can profoundly affect outcomes. But the issues are complex. I am also aware of the importance of context and at different times people can be and are described in different ways. So on one occasion, some-one might be a person receiving services; or at another a mental health activist, or parent, friend, health worker or supporter, etc; according to the services they receive, or the contribution which they make. Empowerment is key. When each person is encouraged to step forward, to take back control, through expressing their own needs and strengths, they are able to establish potency and hope. There is a need to value the task for each person of re-finding their sense of self and developing a positive personal identity after an episode of mental distress. We know that other people ultimately cant recover us. They can help through the words they choose and the support they give, but we have to find for ourselves, the inner resolve and resilience that are needed. Respectful relationships can stimulate inner energy, which helps people regain meaningful lives apart from mental health services, or accessing them when needed, as appropriate. Part of the issue around identity and identification, relates to the inner perception of the person who receives services. If we see ourselves and our wellbeing as primarily growing out of the services we receive, (and for many of us, this is the reality for a time), then perhaps we can legitimately identify as a service user. The main issue might then be, how satisfactory is that service and how well does it treat or respond to the individual themselves. Perhaps, later when further progressed in recovery, a person may see themselves as a person first then, it could be argued that the individual will see their own wellbeing as dependent on very many personal decisions and choices. This may well include how best to engage with a diverse range of available services. It may include campaigning for improvements, but it doesnt leave that persons identity wellbeing and future, merged with and conflated with the mental health service they receive. It was Freud who identified three things we need to be happy; relationships, occupation and recreation, expressed simply as, love, work and play. Providers of mental health services are increasingly mindful of these connections and of developing hope. Mental health problems should not mean that people are anchored to the past because they have been through a bad patch. On the contrary, when some-one who has been through such distress is valued for their strengths, they gain increased insight to make helpful choices. When seen as people first, and supported that way, individuals can be signposted toward holistic provision, whether it be art, education, therapies, etc. We can then we begin to develop different life goals and habits and to re-engage with life as others do, in our communities. Life chances for a person managing mental health issues, should allow this involvement in community, to contribution through volunteering, connection and work, according to individual needs. It was Vygotsky who focussed on the social nature of learning. His work on the Zone of Proximal Development, recognised the value of peer support; what a person can do in cooperation today, they can do alone tomorrow, sums up this aspect of his philosophy.

The Evolving Story, the Historical Context We know that historically, society has always found mental health conditions and experiences difficult to confront or respond to. People have been abused, burnt at the stake and lobotomised, and been subject to un-anaesthetised electric shock treatment, because of attitudes of those in powerful positions, toward powerless minorities. Even now, there are many with mental health difficulties who languish in prison for minor crimes, and there are a disproportionally high percentage of people who are homeless, jobless, financially poor and lacking in secure and trusting relationships. These disadvantages are so profound that in America in 2006, the difference between the death rate of people with and without a diagnosis of mental illness is currently a shocking twenty five years. This has increased from twelve years in 1986 (The Roots of the Recovery Movement in Psychiatry, Davidson, Rakfeldt and Strauss; Wiley-Blackwell, 2010 - see page 2 in section 1.2, The Rationale for the Book). It may be that Care in the Community, and increased freedom and vulnerability of the individual, when faced with some of the inadequacies of support, are partly at the root of this. Almost certainly stigma and exclusion are part of the picture. We also know that modern day society leaves many dislocated, isolated and unfulfilled. We know that during a life time, one in four may experience mental ill health. We are aware that change is continuous and that attitudes have improved with time. Words that express the position of society toward the mentally ill have changed. In the past the language used and words chosen were often associated with the conditions that people experienced. These labels took on their own stigma, e.g. lunatic, maniac, neurotic. Later they described the relationship with services, mental health patient, mental health client, service user, etc. As each word or phrase has picked up social stigma and become less acceptable, a new one has been needed to replace the tarnished one. I want to try to convey the complexity of how people feel about the language that is used around their lives. When very ill many people find that paradoxically every single thing matters and almost at the same time nothing matters at all. This fractured vision can leave a person acutely fragile and sensitive to how they are seen and spoken of. It is easy to see why people who experienced mental distress sought the use of a neutral phrase like service user, to replace the dramatic and often condition specific language of the past. And though I find it difficult, others may feel that it describes a helpful relationship. I have to wonder if I am blind to my own prejudice. I suggest that as times change and we are in a new situation, we need new words to offer hope. Increasingly the recovery movement recognises that people have the capacity to get well. This requires a changing relationship with the world in general and mental health services in particular (see Box 1: 10 key organisational challenges - Sainsbury Centre Final Policy Paper Implementing Recovery - A methodology for organisational change, 2010). People who use services are increasingly more empowered and are speaking up and being heard, often owing to the efforts of people who have been through the mental health care system and who found it wanting. Many have campaigned tirelessly for better, more respectful and supportive provision. The recovery movement has helped challenge attitudes and epithets and has influenced the power balance, to build a more healthy vision for the future.

Finding Ourselves and Developing a Personal Identity Ideas are always developing, and those that have the feel of the times with them, have great strength. Like seeds, they are carried by the lightness of the wind behind them. We need language that does not underestimate the capacity of people to change. Nor should we undervalue the potential of the language we choose and that health and community systems select, to motivate and support that change. For me, the recovery movement and my work towards wellness, hinges on being able to see myself and the services I receive, through a lens of progress which is dynamic, adaptable and is mutually respectful. I can learn from others and make helpful changes in my life and others can learn from me and thus we move forward. These changing relationships and interactions with those who provide services focus on issues of personal identity. Most people develop their identity without conscious effort and become secure in their own minds and in the values they believe in. They are not encumbered by the catastrophe of mental health breakdown and in-patient experiences. Most are fortunate and are not labelled by incidents of emotional collapse, which in reality, many people experience at some time in their lives. Others receive a diagnosis, as a result of getting too close to the edge, when circumstances are such that there is no-one to help them back, at a time of crisis. As people with our own complex identities, we also need the organisations that support us to see themselves as dynamic, multi dimensional, forward looking and nurturing of their staff and the people they support. That way a recovery focussed organisation is enhanced and people are supported in a holistic way. Part of the concern regarding terms like 'service user', mental health patient seem to relate to aspects of self stigma that we all struggle with. Stigma can arise from many experiences. Not least, the feeling many people have, that having once experienced episodes of mental distress and become unwell, they feel they are not allowed to put it behind them; so that mental ill health can seem like an albatross around their neck. Thus there is a subjective temptation to challenge any word that is a link to mental health services. But there is also a tendency to hold a single view of organisations, mental health facilities, government, etc. That single story too, needs challenging, if we are to develop accurate images. Finding the right language is problematic, partly, because we bring our own histories with us. What suits one does not suit all. For instance, when choosing appropriate language I find myself reluctant to accept the straightforward term, 'Patient', because I feel a person has so many other facets, and this phrase is dominated by a relationship to the medical world above all else: although, of course, from the medics point of view the person is, 'presenting for treatment. It is sensitive territory and related to human engagement, time constraints and the purpose of the occasion. When we think back to the international impact of the New Zealand recovery movement we can reflect on their debates on language. I believe its the case that there isnt a Maori word for patient but the word that is nearest, translates as seekers after wellness. This emphasises the active role and engagement of the person themself in their own recovery, in the way that we are seeking. It links too, with the Maori model of health. We are familiar with the bio-psycho-social model which identifies dimensions of biological, social and psychological difficulty, for health and intervention. The Maori model of health also includes family and environmental dimensions and they see the whole as a four sided house and roof, suggesting a much more holistic interactive and participative model of health and wellbeing.

There are arguments in favour of the word patient; they relate to the fact that then a person is seen as like any-one else, who has a physical problem and is seeking help. But it is still difficult to detect the recovery dynamic within the term, 'patient'. It could be argued that it lacks the forward movement, being a patient patient. Though when times are really bleak, this may be all that is possible, waiting for improvement, standing still and letting ones self be. As time moves on and hope returns, there is a need to move beyond pausing, toward proactively engaging, becoming empowered and taking the steps needed to make progress for ones self. Its hard to feel that the term patient encapsulates all of this. It is worth noting that the term patient has a specific context and is more a name than a label. It recognises reciprocal roles and contracts. The patient belongs to one point of the doctor -patient relationship and in reality the legal duties of a doctor are not in respect to the whole of his or her life but more reflect how he/she behaves in relationship to patients. The designation of patient status also provides rights and responsibilities. As a patient one is supported by the art and science of the doctors medical care and intervention and perhaps in the light of major changes to the National Health Service, we need to value this relationship more. In exploring these areas, I find my own thinking developing. Perhaps I have to accept that people who experience mental distress will have their own preferences to describe how they connect to mental health services, and these may change with time. But there is a need to reiterate, that the language we choose and use can help or hinder our recovery, whether it be person with lived experience of mental distress, person in recovery, or many other possible descriptions. What seems important is that we are encouraged to choose helpful, hopeful language, that sees individual uniqueness as a strength. Does Stoicism have a Place? There is another way of looking at this. As we begin to build resilience and regain a sense of self and a renewed sense of personhood, and personal identity, following an episode of mental illness, then we can begin to see language for what it is, just a single part of a bigger story, and at times an inadequate tool to communicate complex ideas. So perhaps we can begin to build a stoical response. With insight and awareness we can challenge any self identification with being a service user, vulnerable or ill and avoid taking a them and us stance ourselves; so that we challenge the temptation to believe that my life problems are to do with what has or has not been done to me. Regaining the resilience, courage, vision, support and hope to be willing to see oneself as primarily a person first with roles and responsibilities towards ones own wellness, is a crucial forward step. But if language and stigma matters to one individual, it probably matters to many, and the respect and equality that is shown in exploring these aspects of understanding is as important as the outcome. When people providing services keep an open mind and see people for what they are, people, pausing to regain strength or to overcome challenging mental health difficulties, then tolerance is likely to grow. That may be the best that can be currently achieved, for the reality is that the debate is ongoing. What is the Language of Recovery? Many have defined recovery. Here Im thinking about some of the terminology that has been significant for me. There were and are many re words on my route to recovery. Re-claiming, revisiting, remembering, re-framing, re-flecting, re-storing, re-storying. They lead not necessarily along one path, but along the labyrinths of life and the multiple journeys that we take. They lead

through re-discovery and re-connection to re-uniting with a self, that is not about perfection, but about living a good enough life, re-engaged with improved resilience.

People in Recovery In The Roots of the Recovery Movement in Psychiatry, Davidson, Rakfeldt and Strauss; WileyBlackwell, 2010, there is the following comment on the subject of language, which succinctly sums up my feelings. (page 5, in section 1.2, The Rationale for the Book):We believe strongly in and adhere to person-first language in our work,...We thus refer to

individuals with serious mental health illnesses as people with serious mental illnesses, or people in recovery rather than as 'the mentally ill' or any one of the historical epithets used to refer to such individuals ( e.g. 'mental patients', 'schizophrenics', 'manic depressives' etc). It is as we will repeatedly stress, a foundation of the recovery movement to view people with serious mental illness as people first and foremost, and only secondarily as people who have happened to develop a mental illness. The illness or diagnosis can no longer be viewed as subsuming the person.
The debate around language and stories highlights the need for reflection and vigilance. The real danger in the single story, is that in showing a partial view, it distorts perceptions. When we are seen through a human lens as fallible beings, striving to do the best that we can, to survive as best we can, then we as people in recovery are likely to regain the respect that is needed, to recover our sense of purpose and hope for the future. So we can move with confidence from surviving to thriving and can develop our many facets and talents. If we can be viewed across the nation as people first, people, in our communities, overcoming difficulties in much the same way as everyone else, then we can regain a sense of normality and potential in the life that we live.