Speech by Merinda Epstein at
Richmond Fellowship AGM meeting, November 2004.

"One of the many challenges facing consumers, carers, and providers of mental health services is that of funding relevant and effective services and preventative strategies. Currently, the laudable aims of the National Mental Health Strategy are being pursued in a socio-political context of economic rationalism and emphasis on increased productivity. The urge towards greater productivity within the mental health sector is often expressed in terms of achieving better outcomes from the available resources rather than by increasing expenditure. Here, the language of the market place has colonised the territory of social justice—the notion of ‘good service provision’ is constructed in terms of economic efficiency rather than in terms of human experience."

Whenever we speak or write we are in fact translating or interpreting the world we live in and our relationships to that world; even as we construct our meanings through language we ourselves are constructed as social beings by language. Too often we fail to acknowledge or even to recognise that meanings are relative and do not dwell in the words themselves but in the social, cultural and historical contexts in which words are used. For example the word ‘gay’ to my grandmother in the 1920s, means something completely different to my niece in 2004.

The ways that words are used do have significant material effects on the lives of human beings: for example in perpetuating powerful myths, stereotypes, and dominant social perceptions. Reinforcement of negative attitudes towards those who are already marginalised and alienated by their experiences of mental and emotional pain is a common, albeit unforeseen, consequence of many attempts to address and alleviate that pain. That is, in trying to ‘make things better’ we may be making things worse. A possible explanation for this paradoxical effect is that in our very human need to create meaning and impose order amidst the chaos we all insist on believing that some language at least is value neutral: for example, the languages of justice, science, economics, or perhaps just ‘our own languages’. In fact, all languages, including the language of ‘best intentions’, are not only value laden but value dependent. For example, a major campaign during the 1990s with the slogan, “help us to help them” felt just like more alienation if you were the ‘them’.

The ideological justification of resource rationing policies

One of the many challenges facing consumers, carers, and providers of mental health services is that of funding relevant and effective services and preventative strategies. Currently, the laudable aims of the National Mental Health Strategy are being pursued in a socio-political context of economic rationalism and emphasis on increased productivity. The urge towards greater productivity within the mental health sector is often expressed in terms of achieving better outcomes from the available resources rather than by increasing expenditure. Here, the language of the market place has colonised the territory of social justice—the notion of ‘good service provision’ is constructed in terms of economic efficiency rather than in terms of human experience. This model of understanding defines the arena in which negotiations regarding funding are carried out but, in addition, the model disseminates its unacknowledged value base into the wider community.

A common attempt to solve the problem of resource distribution is grounded in reductive polarisation of meanings. We all tend to recognise or identify others in terms of the familiar and the unfamiliar; the right and the wrong; the normal and the abnormal; the well and the sick; the good and the bad. This is not to say that we are always aware of the way we are constructing meaning in terms of opposition but rather that when we use a word such as ‘good’ the implication is already present that some thing that is ‘not good’ also exists. This kind of polarised thinking and its material consequences become particularly evident in struggles between different interest groups—especially when those groups are vying for the same prize.

Within the mental health sector, there are a number of ways in which those seeking funding may use language that is inadvertently damaging to large numbers of consumers. The most common categorisations used in pursuit of greater resources for particular services and initiatives can be summarised as follows:

• resources should go towards treatment and prevention of
  1. Serious illness or severe and enduring (which implies that some users of services have conditions that are not serious, severe or enduring); or towards
  2. treatable conditions (which instantly raises the idea that some conditions are untreatable—treatment resistant); or towards
  3. meeting the genuine needs of the sick (which implies that some service users do not have genuine needs—they are the so-called ‘worried well’)

Each of these categories of ‘greatest need’ carries with it an unspoken moral judgement about an often unnamed group against which that need is measured; each assumes the existence of two separate groups of mental health consumers within the community, divided according to whether they deserve to receive services or not. A consequence of this value-laden approach to funding distribution is that those in powerful positions rationalise decisions about resources by employing a language of division and discrimination. Within the whole mental health sector there is an almost casual or unthinking acceptance of this kind of language when it comes to the provision of services. The rhetorical gymnastics that characterise justification of funding decisions become substantial, acquiring a burden of moral significance, as they are conveyed through the system as ‘truths’.

If every consumer found her/himself on the right side of one or another of these moral equations there might be a little less cause for concern. However, one of the most damaging consequences of this kind of semantic sleight of hand is that some people find themselves consistently on the wrong side—on the side, that being unnamed, is invisible and silenced. For these individuals services may be difficult or even impossible to access. Perhaps even more significantly, these people are subjected to a particularly insidious negative discrimination within services and are made to feel that their distress is somehow illegitimate, bogus, or unimportant. Since one of the most common effects of mental and emotional distress is profound loss of self esteem, it is clear that this kind of approach is in human terms cruel, insensitive, and harmful.

Perhaps the ideas flowing on from the categorisation of human suffering require a little more teasing out. For example, if funding decisions are based on a discourse around ‘sick’ and ‘well’ the dominant medical paradigm operates, at the level of service provision, to marginalise people whose distress does not fit neatly into a framework of biological causation and treatment. Then again, psychological, social or spiritual approaches to the alleviation of mental/emotional distress invalidate the pain of those whose needs are not met within those models. The currently fashionable—and somewhat unwieldy—term, ‘biopsychosocial’ has been coined in an attempt to avoid reductive responses to the legitimate needs of consumers. However, like other words, the term is meaningless unless it has currency and context. In the real world, carefully cultivated and protected insularity (even enmity) of many adherents and practitioners of different ‘therapeutic’ approaches works against co-operative and holistic understandings. The wars of words between different groups of professionals defending their territories tends, at the level of popular understanding, to translate human distress into a failure to cope with life’s challenges: as either weakness, lack of moral fibre, malingering or chemical imbalances.

Two examples

It might be interesting to have a look at a couple of terms which have grown out of the debates of the last few years. I am particularly interested in looking at the way that we resort to inventing language which will enhance our capacity to argue or explain our politics. Often we create language which we later dismiss as ‘jargon’. However, in the process of its creation something interesting happens. We find a way to make something visible that had previously been invisible; to say something that previously, perhaps, could not have been said. I am not defending the overuse of jargon. Rather, I am arguing that sometimes our language is inadequate to describe new or challenging concepts and the use of established language necessarily starts to lead to miss-communication.

The two examples I would like to refer to briefly here are the terms that have entered the debate over the past few years. They are both playful in the sense that they are humorous however underneath the superficial jocularity they raise important issues.

Met-un-need

Alan Rosen, a public sector psychiatrist in Sydney who has been a strong supporter of the public sector and the role of consumers in service delivery and review, coined the term ‘met-un-need’. Even a cursory glance at the statistics about where money is being spent in relation to funding mental health services shows that an inordinate amount of public money goes into subsidising the so-called private practices of psychiatrists working in middle class and ruling class suburbs in major cities. Alan Rosen, commenting on this aberrant distribution of resources, coined the term ‘met-uneed’ playing mischievously with the commonly used jargon of ‘unmet need’ which gets trumpeted out by individuals and organisations lobbying governments for greater resources for mental health. I think it is a very clever phrase however I am also interested in the way the language places the onus of responsibility on the patient rather than the psychiatrist and the RANZCP. This has interesting implications in terms of how Dr Rosen understands the power relations between clinicians and ‘patients’.

Thirdly, I am interested in how this phrase is ‘heard’ by consumers particularly given the extremely common scenario that people with certain sorts of conditions (depression and/or female gendering for example) are much more likely than others to assume that they are frauds and therefore that their needs are not legitimate, selfish and un-need-like.

Serious-not-mental-illness

The second term is similar in its use of a negating prefix. In contrast to ‘un-need’ this term has emanated from the consumer movement. We have started to talk about ‘serious not-mental-illness’. This has come out of a realisation that within the legitimate sphere of activity in the sector there are life conditions faced by people which might not be named as illness. Sometimes I use a reverse analogy of the casualty department of a public hospital and its response to physical pain and trauma. There is a triage process but this process has two different doors through which people with ‘needs’ might be ushered. Through the first door might go the person with ‘serious illness’ but the person with serious wounds caused by trauma also have a legitimate and resourced place to go. There is no denying the ‘seriousness’ that is blatant. There is no doubting the seriousness of many forms of not-illness in this physical health context. However, when we come to discussing legitimacy in mental health we seem to only have one door, one path, one way in. Trauma is often rendered invisible and even when it is acknowledged it is often dismissed as outside the province of mental health services.

Although this reverse-analogy has been helpful in trying to explain what we have come to mean as ‘serious not-mental-illness’ it is not adequate. Firstly, it ignores the reality that the triage process in acute services is often fraught and challenged. Secondly, it causes conceptual confusion between people with trauma-induced brain-damage and the people to whom I am referring here with rotten-early-life related mental distress. Thirdly, it runs the risk of delegitimising yet another group of people- those who can’t seem to find socially acceptable explanations to understand their pain.

Not so long ago a young woman said to me, ‘I wish I had been abused when I was a child.’ I was a bit shocked but through further conversation it became obvious that this young person believed that any ‘real’ explanation of her pain would be better than nothing - naive perhaps but understandable and honest. She told me her story. At first she (and doctors) had searched for a biological explanation for her distress - later, she had searched in other places with different professional assistance but found nothing that she believed could explain the extent of her pain and the consequent extent of her cutting, burning and overdosing. Eventually she had fallen back to punishing herself for being pathetic, weak, ‘a loser’, ‘bad’ with the perceived lack of an adequate explanation exacerbating her self hate and self abuse. I think that this is very sad. Perhaps it reflects the pressure that we, as a culture, put on ourselves to find socially acceptable explanations masquerading as scientific ‘proof’ - to explain our place in the world.

‘Serious not-mental-illness’ was a term we introduced to try and describe the absurdity of identifying some manifestly serious problems as not serious. The most obvious examples of this came in the first few years of the First National Mental Health strategy as policy directives were reinterpreted and framed into service level triage arrangements. Perhaps the most graphic illustration for me was when a consultant psychiatrist spoke to me off the record during the lunch break of a national policy meeting in Canberra. Conspiring with me in a corner with coffee and croissant in his hand he noted that some people ‘were just too fucked’ and a waste of public mental health resources’. His reference was to people with so-called ‘personality disorders’ who happened to be women caught between forensic services, Psychiatric Disability Support services, drug and alcohol services and the mental health system. It made me even angrier, when during the afternoon session of the same meeting, these women were being discussed again, and this time they were absent-mindedly described as not fitting into the category of ‘serious mental illness’ with the implication that what was happening in their lives was not serious. It seemed blatantly irrational to me that the same women could have problems that were both too serious to be of interest to the mental health system and not serious enough to claim a legitimate place.

Inclusive Language - the advantages and the risks

I have been impressed with the inclusive language used in relationship to indigenous mental health issues in Australia. Where we, the dominant white culture, talk about mental health services and mental illness, indigenous communities have chosen to use the language of emotional, spiritual and social well being. I have been agitating now for a couple of years that mainstream policy makers, lobbyists, consumers etc. could do well to ask permission to borrow this language and these ideas. I was interested recently however to hear Phil Iker (a Murray woman from Townesville who is a mental health consumer activist) explain how this inclusive language had unfortunately allowed interest groups which did not use the language of illness to manipulate the agenda in such a way that people with identified psychotic illness in Aboriginal communities were being rendered invisible and finding their services disappearing.

Oh dear! This is the reality of the political process. We have to be so vigilant; and as consumers we have to learn about how to do politics effectively so that we can keep up with the language as well as the policy - see through it and create our own if necessary in an effort to remind everyone that reductive positions on complex social realities are dangerous.

Social justice/ consumer politics and distribution of resources

Taking the issue of distribution of resources further:

When I was thinking about this presentation I was working around a sub-title which would go something like this: Strange bedfellows – radical consumers and the private psychiatric sector or perhaps; Why do I find myself disagreeing with those who should be on my side? In the end I wasn’t able to put the words together well enough to say what I wanted to say. Nonetheless, I would still like to briefly mention my dilemma.

I have just been talking about the issue of diagnostic labeling and legitimacy. There are a further two issues I think which often get entangled with this and which I think need to be carefully separated.

• The first of these is the role of subsidised pseudo-private psychiatry in Australia and the capacity of those people who have material wealth to gain a disproportionate amount of service largely paid for by the public purse.
• The second issue is about the medical model and methods of practice from psychotherapy through to cognitive behavioral therapy, drug therapy and dialectical behavioral therapy etc.

Often I hear people within the sector talking in a way that confuses these issues. Psychotic illness is not a category of material disadvantage necessarily. There are, of course, many, many people who have been labeled as having psychotic illness who are on pensions and who experience poverty. However this is not always the case. In the same way I’ve heard ‘carers’, ‘lobby groups’ and others use dismissive terms like, “the worried well’, “only neurotic” , “just personality disorders” to dismiss clients of private psychiatrists. This is equally nonsensical. Poverty, oppression, isolation and disadvantage are extremely important issues that have an enormous impact on people experiencing emotional distress and disability but it is absolutely wrong to blame the mal-distribution of resources on to people asking for help just because they fail to attract the big ‘I’ for illness labels such as Schizophrenia or Bipolar Disorder. As my psychiatrist regularly reminds me:

“each of these dubious categories (diagnoses) contains a range of seriousness. None is serious by definition and, equally, none is not serious by definition”

There are always fashionable bureaucratic terms appearing, disappearing and reappearing again. It’s a joy to laugh at them if we can. When I first started my activism in mental health in the very early 1990s the trendy term was ‘seamless services’. I will never forget going to a planning meeting at what was then Royal Park Hospital. I was accompanied by a consumer who had been around for a long time. He knew the ropes. When they started to use the ‘seamless services’ language he, quick as a flash, sat up and spun back to them:

“I know what seamless means. The service seems to be something but it’s less than what it seems!”

The new ‘in-terms’ in the sector are ‘high prevalence’ and ‘low prevalence’ disorders. It makes me angry when I hear people arguing that anxiety and depression etc. are not really the areas that need funding in the public sector context because they are high prevalence disorders and therefore people experiencing them would be suffering less, less disabled and therefore having more disposable income and having less important needs than people with low-prevalence disorders. I have a theoretical problem with this argument but I also have a personal one. My sister had major depression. She was terribly, terribly sick and incapacitated. She eventually killed herself. We all knew she would. I am afraid I am incensed when I hear people arguing that Susan somehow died from something that wasn’t serious!!

My argument would be that we mix up these issues because it is politically unfeasible to place the problem publicly where it belongs: to a striated social system that systematically advantages those with material resources and disadvantages those without. Within the mental health arena this is aided and abetted by the monopoly of psychiatrists and their social power. Psychiatrists choosing to put up their shingles in Toorak Rd and subsequently charging inordinately high consultation fees is a moral and ethical issue for the College of Psychiatry. It has everything to do with a patient’s (or a patient’s family’s) fiscal resources but not necessarily anything to do with diagnosis or treatment modalities.

However, this sort of structural analysis remains reductionist and confrontational. The situation is much more complex than this in real terms. For example, I know in Melbourne of several psychiatrists who bulk bill many consumers who have been totally spurned by the public mental health system (often because they are ‘not serious’, ‘too difficult” or ‘socially undesirable’). These people could easily be rhetorically located (or encouraged to locate themselves) within the debate, as only ‘the worried well’, “only neurotic” or “just a personality disorder”. Even their belief and trust in their treating practitioner can be pathologised by those with a political agenda to see other groups of consumers or types of services given priority.

From a consumer perspective the tragedy is that the signposts of legitimacy are internally absorbed by the people we call patients (or non patients). Those of us whose label has been deligitimised feel it. Likewise those of us who are refused a ‘name’ for our distress that would give us legitimacy feel it too. It becomes yet another part of the lived experience of psychic distress.

A local example

Some time ago two other consumers and I attended a meeting of a Mental Health Service in Melbourne. We were presented with a copy of the latest flier advertising the area’s community and acute services. We found that our attention was drawn to the second page in which the area was attempting to define its clientele. I will quote from the document:

These services are offered by a clinician (social workers, occupational therapists, nurses, psychologists and medical staff) to individuals aged between 16 yrs and 64 yrs who have a serious mental illness and/or associated psychiatric disability. This includes people suffering from:

• psychosis
• severe mood and eating disorders
• severe anxiety disorders
• as well as individuals with severe personality disorder in a situational crisis who are at risk of self harm.

This is indeed an interesting reflection of the culture with which we are working. It would appear that people with so-called personality disorders don’t ‘suffer’. We need to question any service ideology that insists on defining and distinguishing between those who suffer and those who do not. I find this sort of use of language abhorrent.

The language used in this flier makes no apology for placing so-called personality disorders fourth and last in their list of clients. It makes quite clear the fact that the service only recognises a responsibility to treat people labeled with a Personality Disorder who are ‘in a situational crisis and likely to hurt themselves’. The terrible and sad thing about this from a consumer perspective is that if it were I reading that brochure I would once again feel unclean, undesired, de-legitimate and even more self-hating. I would also be angry that my suffering would be destined to remain invisible regardless of any pro-active choices I might make to assert my need for assistance. I would continue to assume that the more I was seen to be ‘coping’ the less likely I would be to attract help and relief. The Service, far from acknowledging its own part in what could easily lead to an exacerbation of symptoms, will probably see and accommodate what was happening for me purely in terms of the flawed person(ality) they would already presume I had.

For example, this would be like not treating a wound in an emergency department until the person could come back and demonstrate it had now become infected.

Finally, I’m interested in the use of the adjective -severe. What amuses me is the sliding of language in the face of political critique. I haven’t done it but I think it would be interesting to look at the number of documents which have moved from using the word ‘serious’ to using the word ‘severe’ as the critique of the word ‘serious’ and how it was being manipulated gained momentum. Now the language has moved from ‘severe’ to ‘severe and enduring’ and we are also starting to hear people confusing low and high prevalence disorders with severe and less severe experiences of people labeled in different sorts of ways.

The bizarre outcome of all of this is mass advertising campaigns for the depressed and suicidal to seek help at exactly the same time as ‘depressed and suicidal’ is defined as normal and thus unworthy of the ‘severe and enduring’ label which is reserved for those with psychoses.

Suffering and science

In closing, I had an opportunity to sit on the committee, which was overseeing the evaluation of the first National Mental Health Strategy. Towards the end of what was quite a long and sometimes-difficult process it became obvious that we would have to try and say something about the use of the term, Serious Mental Illness. The question was posed: was the problem one of the folly of trying to define a priority population or was the problem the use of a term without sufficient definition so that it becomes vulnerable to political manipulation?

As a consumer what interested me was the irresolvable problems of evidence-based positivist science. There was a push to solve all semantic and even the profound ethical and social decisions by resorting to definitions, which would supposedly lend themselves to ‘counting’. That is, if we choose to continue to use a term like, ‘Serious Mental Illness’ we will have to bite the bullet and define it. If we are going to attempt to bite the bullet and define it we will need to have criteria for ‘seriousness’, which can be counted.

From a consumer perspective this perpetuates the problems of pain. Pain and suffering cannot easily and neatly be counted. Disability can perhaps a bit more easily but disability is not mental distress necessarily or absolutely. As Einstein counseled us;

"Not everything that counts can be counted, and not everything that can be counted counts."