Merinda Epstein - A Consumer Activist's Guide
To Mental Health In Australia
Promoting Women's Mental Health
Promoting Women's Mental Health Conference
"My story is about carers and consumers and it is about women....I now have no doubts that what I have experienced that some call mental illness evolved in part from the pressure that was inadvertently put on me by a middle class family trying to deal with (and hide from public view) the mental 'illness' that was everywhere within us. I experienced the structures of enclosed and isolated nuclear family life under stress as oppressive. I experienced the obsession with anglo-Australian middle class privacy as unhealthy. As a young women surrounded by mental illness I had nowhere to go and was given 'caring responsibilities' from which my male siblings were exempted."
The first time I ever spoke publicly about my own experience of mental illness was in 1994 at a Melbourne workshop on Women's Mental Health Research. I chose that particular occasion for two reasons. 1) Timing: I felt that I was 'ready' to speak. 2) This was a women's space and I felt relatively safe. I was more confident that here an approach to knowledge which draws heavily on storytelling and the sacredness of lived experience stood a greater chance of being respected.
During the first twelve months of my work in the sector I was not 'out' at all. My stories revolved almost exclusively around the experiences of my sister, Susan, who was ill for thirteen years before eventually killing herself. I felt progressively uncomfortable about talking only through her experiences. It was a cop out for me, and it was too easy to reframe the whole complicated Epstein story as the story of Susan's mental illness.
My discursive position evolved as I recognised the ethical dilemma I was facing. I was scared to speak from my own experience but, at the same time, I didn't want to say or do anything that might open Susan's life to society's judgmental gaze. I did not want women, or more particularly my sister, taking responsibility, even (or perhaps especially) in death, for her family or for society. At the same time, I knew that I must find a way to speak out--both as a woman and as the keeper of an important story. My political integrity was dependent on my finding a voice. In the end I had no choice really. Since then my own story has become progressively more public.
The first paper I ever put together as a consumer was called 'Sisters' Stories'. It was written for a book: a collection of stories about women doing grounded local politics. This writing was an attempt to confront my own life with mental distress and my first public attempt to interweave Susan's story and my own.
First, I wrote about Susan.
It's funny the things you remember. I remember her blue dressing gown which, when she was really depressed, she never took off. It was grubby. I remember her coming to stay with me and she wanted to sleep in my bed with me and snuggle up very tight and I was afraid. I remember her biting my mother at the theatre and I remember my brother throwing her full pelt against a wall.
Of her times in hospital, I remember being terrified, thinking everyone was watching me all the time; being at the same time fascinated and disturbed by the other patients. And I remember everyone , especially my mother and me, being far too cheerful. But, above all, I remember the change in my sister - the drugs. They changed the way she walked. And even the way she stood. They made her shake. They were so small. You could hold dozens of them in your hand if you wanted to, and they came in special glass containers tinted brown with childproof lids. I watched my sister count them sometimes . . . twenty-one, twenty-two, twenty-three . . . I guess it would have been easier if they had been huge and she'd had to chomp into them; or if they (those who prescribed them) had had to grab her and gag her and force them through her mouth (too small and delicate and beautiful really) and down her throat. Then I could have made more sense of the potency of these drugs. They should have been big.
I watched my sister grow from a competent and confident person into someone who seemed to allow other people to boss her around and tell her when to make her bed, and to eat up her dinner and allow them to open her mouth to make sure she had swallowed all the pills. I was angry for her and I was angry at her. My anger was smoldering like her tracheotomy scar because, as a young woman, I did not understand that it was O.K. to be angry at 'nice', caring nurses or men in suits who said good morning as they passed by in the corridor looking important and sane. Neither did I understand that it was O.K. to be angry with a sister who, after all, was really very, 'sick'!
I was too young then and I was too scared to be able to do anything to change history. I used to lie in bed at night (... after night after night...) and pray that I could have a magic wand. I wanted to be a woman. I wanted to make everything better again.
Further into the paper I began to dabble with themes around the origins of the family's distress and Susan's illness:
At the time, and during the next thirteen years, we all clung desperately to an understanding of our distress that would not destroy us. This meant that we searched with increasing clamour for a medical diagnosis for Susan - some explanation that would explain her pain and make it real for us and all of those around us to understand.
Susan needed an explanation that was based on chaotic chemicals rather than human stories because she had profoundly astute intuition. She knew, as I guess we all knew, that without a "real" illness she would be punished for her pain and we (her family) would be blamed.
She found an adequate diagnosis and through it she found relief and hope but it seems so tenuous to me to wrap faith around a jar of pills and E.C.T. I believe that what she found was an institutionally appropriate but fundamentally flawed strategy because it encouraged her dependence on medical demagogues, maintained her in between the warp and weft of diagnosis and prognosis (which remained dismal) and discouraged any of us from looking at the social structures which define us for clues that would (I believe) have helped to unpick the threads leading us to a much more 'real' reality in the end.
While I cannot say that I know better now than I did then, I can say that I have a more sophisticated understanding of the complexities of mental distress in both the personal and social contexts. I do, now, believe in the power of chaotic chemicals and I can more genuinely understand how difficult and degrading it must have been for Susan trying to convince others that her problems were biochemically based-even though her depression was unresponsive to the available drugs. This was all well before the new antidepressants came on the market.
Looking back at this paper now I realise that I was still more able to talk about Susan's experience than I was about my own. I was able to provide a somewhat crude critique of the way I had been treated by services but I was still approaching the more subtle and paradoxical issues through Susan. Here is what I had to say about my own experience:
I can tell horror stories of things that have happened to me in hospital. I have been incarcerated as an involuntary patient. I have been watched and monitored , learning to live with prying eyes in the bathroom and in the toilet. I have fainted and then been accused of deliberately hitting my head against the wall. I have had my room roughly searched and my belongings flung everywhere in front of a visitor who just happened to be my boss. My partner has been forced to cart me in his car from one hospital to another in a barely conscious state, covered in black tar (which they give you to try and vomit up poison - in my case an overdose of pills) and dressed only in a hospital gown which was too small and left me totally exposed at the back.
I have been ridiculed in public places and taken on an excursion to the zoo. I have been told to walk faster during a walk to the park and informed that my physical disability was a stunt to disrupt this excursion. I have been distressed and desperate and have written about private things only to have the letters taken away and filed as evidence against me (... with apologies on one occasion but no attempt to return my property.)
This description still rings true. I was treated like shit! These experiences inform my understanding of the complex reality that is mental illness-it is not just the personal distress-it is always socially and culturally situated. The kinds of harmful practices that are still found within services should not be overlooked when talking about the issues.
Even when I wrote 'Sisters' Stories' I was grappling with my own issues around trying to understand the relationship between socially constructed distress and biochemical illness. I can see myself trying to come to terms with my own pain and quite genuinely trying to locate this within a younger sister's experience of what Susan had gone through. In the background (not written down but now understood so much better) I can see my anger about having my own mental distress disregarded in a distressed family preoccupied with others' (not just Susan's) more overt dislocation from the world.
Over the years I have become more forthright. I now realise that a significant reason for my reluctance to tell some parts of my story from my own experience has been that I have largely failed to convince myself that I have a legitimate mental illness. Certain kinds of mental and emotional distress-often women's distress-are all but invisible: even within the consumer movement. I have asked myself how I was able to speak through Susan's stories-perhaps it was precisely because she had-finally-achieved legitimacy and visibility through killing herself.
I have been given many labels but the one that has stuck in my gullet-the one that hurts the most--is Borderline Personality Disorder. This is the one I struggle to get off my back-the one that has exacerbated my depression and, at the same time rendered that depression invisible to me. I have stigmatised myself as a fundamentally flawed personality. This diagnosis is-in reality-a very effective way of silencing those upon whom it is imposed. I have been silent about it-even in the midst of being very noisy about other things.
Perhaps some of you are unaware of the hierarchy of psychiatric diagnosis. For illustration, I will borrow a light-hearted but pointed summary from Persimmon Blackbridge's recent book Prosac Highway. Persimmon suggests that:
So what about the ones 'they' hate?
I sat for over five years on the National Community Advisory Group on Mental Health. During this time I tried to get issues for people who had been labeled as having 'conditions' (the language is so inadequate) not easily categorised as biochemical in nature to the table. I was not very confident doing this so perhaps I didn't push with my customary vigor. Others in positions of policy and clinical authority dismissed the whole area as Merinda's little thing. I was lucky if I got five minutes in 'other items' at the end of the meeting as people were running out the door to catch their planes.
The politics has changed a little over the past few years. The concept of Serious Mental Illness, especially as it came to be used to describe a certain small group of illness categories has been challenged. Within consumer and carer movements, too, there are also the beginnings of change.
Recently there was an important workshop in Melbourne involving strategic players from the consumer and carer movements. Its object was to provide us with facilitated space to talk through our differences. Many at the workshop anticipated that we would want to talk about the obvious issues such as 'confidentiality' or 'who talks for whom' for example. But something more powerful happened.
At the Melbourne workshop I met a Canadian, Mary Graham, who has a long history of self-harming behavior and now works with others who share similar experiences. One of the defining--and one of the most stigmatised-symptoms of Borderline Personality Disorder is deliberate self-harm. Mary Graham is absolutely fearless in talking about her experiences. Her presence gave me confidence for the first time to say some of the things I had been waiting for ten years to say. I wondered how many other women were also waiting-silenced by shame-- in the wings.
After the workshop-that night-I couldn't sleep. I needed to write about the impact that being heard at last had had on me. I was also angry that our contribution was seen by some as unproductive--as taking the anticipated agenda off course. This is such a common experience for women. I wanted to yell, "Whose course?" I wanted to say very clearly that for the first time in ten years the discussion actually seemed to be on course for me.
I decided to write to the convenors. What follows is a part of that letter.
My letter begins:
As the letter continued I attempted to address the issue of stigma.
I have an ongoing discussion about all this with my doctor. She says to me, 'but, Merinda when they labelled you Borderline and other personality disorders it was wrong. You aren't. They got it wrong. What are you doing?' She has even said 'Why can't you talk publicly about depression-at least that's socially acceptable!' But she knows and I know that an important part of what I am presently suffering is an awful consequence of being either 'label-less' and desperate within a label-dependent system, or being labeled with personality disorders including Borderline and treated accordingly. That label nearly killed me. It doesn't matter to me whether they were right or wrong. I choose to talk about this publicly because I want to see a change in the way people are treated when their distress attracts an odious and stigmatising label.
If I wanted to I could talk about all the other labels I have been given-this multiple labelling in itself speaks volumes about the uncertainty of psychiatric knowledge. Diagnostic labels are imposed and taken away for many reasons; for example if you fail to respond to certain medication; or because forms have to be filled in; or if certain drugs can be authorised only for certain diagnoses; and so on. Obsessive Compulsive Disorder, Major Depression, 'nothing wrong with you', Histrionic Personality Disorder, Dependent Personality Disorder, one other personality disorder that I can't remember properly, Annorexia Nervosa, Treatment Resistant Schizophrenia, Reactive Depression, Dysthymia-take your pick. And I do.
In the letter I wrote after the workshop I go on to tell a part of my story that up till now has been a closely guarded secret:
When I was a teenager I fell off a horse-my beloved naughty Bridget-I damaged my knee and the initial orthopedic surgery was disasterous. Over the next twenty years I had thirteen operations including five major knee reconstructions. In the end I had to have my leg permanently straightened. My knee injury was real and, as a young woman, I learnt that the only way that I could get respite from what was happening to me and my family as a result of mental illness was to go into hospital for knee surgery.
I quote again from the letter:
Later that day was the first time I overtly did what the literature calls Deliberate Self Harm. Desperately, I began to attack my leg pulling the scar tissue open with my finger nails, reinfecting the wound, poking objects into it. My leg rotted but I stayed safe. I told no one. Who could I safely tell? Now that I know more about what they do to you when they call you Borderline Personality Disorder I am very grateful for my intuition. It would have been dangerous for me to tell anyone. I hid it for a long time but felt sick with shame and self-hatred for what I knew I had done.
I already knew I was bad and the system just collaborated with my own self judgement. No one said, 'what you were being asked to do as an eighteen year old was not fair'. No one said, 'this isn't your fault'. No one said, 'you can't take responsibility for a society that makes families hide in shame'. No one said, 'this happened to you because you were a young woman and not a young man'
I believed that Susan's illness was been real and that mine was not. My father had told me about Susan's illness, my brother's distress, his own illness and--what he called when he was very tired and alone-my mother's pathology. I had continued to try to help Dad but I still believed that what was happening to me was different and that I only deserved to be punished.
So, much later, when I was labelled as having a disordered personality-of whatever kind--I knew that I should be ashamed. This seemed to be reinforced by my private psychiatrist, having made this diagnosis, sending me straight off to the public system. So, when those representing 'the system' told me 'there is nothing really wrong with you', 'this is not serious mental illness', 'this is attention seeking', 'you are abusing the system' etc. etc. it was very easy for me to believe them. Maybe it was even me that put the idea in their heads. At the time when I was labelled, public mental health policy decreed that people with Borderline Personality Disorder were not given priority. Only those who repeatedly and obviously engaged in self-harming behaviours were accepted as patients. In desperately trying to avoid such behaviours (and for the most part succeeding) I was left with pain and distress that, in being unacknowledged, were all the more destructive. I found myself rejected by both the private and public systems-too much for one and not enough for the other.
I have got stronger as I have got older and I will no longer tolerate anybody saying that what happened to me was not serious just because I failed to attract the right diagnosis.
When I look at this letter and then look back at the work I was doing a few years ago when I wrote 'Sister's stories' I can identify the common threads. I'm intrigued by my continuing preoccupation with issues to do with my life as a girl and a young woman within my family of origin and with Susan's life. At the same time I can see more clearly my struggles around issues to do with whether I wanted my serious distress named as illness or not. You might have heard me speak about the label 'schizophrenia' or the label, 'Borderline Personality Disorder'. I use this term, label, with some care because although it seems absolutely the right word for me to use when I talk about my experience with Borderline Personality Disorder it is less clearly the right word to use if I talk about my experience of major depression. With this less derogatory title I am perhaps relieved and reassured to have a diagnosis-with a name for my pain.
I have been amazed at the lack sophistication within the mental health sector around the potential problems of labelling. Again, this seems to be an area where consumers are leading the way.
Consumers are divided. I believe this has to do, at least in part, with definitions of legitimacy. Some people who are 'locked in' to the system are very angry about the labels they are given. Some people who are given labels that they experience as particularly derogatory such as 'Schizophrenia' or 'Borderline Personality Disorder' are very angry about these labels. Others whose experience is that their distress is not taken seriously, however, and whose suffering might be judged as illegitimate and rendered invisible find great comfort in being diagnosed. These people tend to have less pain associated with naming themselves as someone living with a diagnosis of whatever kind it may be.
A new kind of stigma has emerged within mental health services. This new stigma relates to legitimacy: the mark of infamy is not now that of being 'mad' but rather of not being 'mad'. Consumers have spoken about how the label given to their distress has a great bearing on the ways in which they are treated within services. Some people have noticed that a change in diagnosis (swapping of labels) has resulted in a noticeable alteration of attitude on the part of their treating professional and other workers.
It is necessary to explore this notion of legitimacy in order to understand the experiences of consumers. When madness began to be constructed as 'illness' rather than demonic possession or 'weak-headedness' the search for and trial of bio-medical treatments became the norm. As a consequence, an attitude has emerged amongst mental health professionals sanctioning those conditions that respond to such interventions, and disallowing those condition that do not. This attitude can mean that people in extreme distress are refused treatment or that the treatment they do receive is punitive rather than caring. Consumers are quick to realise that their treatment by services depends-to a large extent-on their diagnosis or diagnoses. Interestingly many mental health workers are equally aware that some labels carry an extra burden of stigma within the system. During a consumer run education session a service provider was asked 'What would be the worst thing that could happen to you if you were in the system?' One provider's instant response was 'to be diagnosed as Borderline Personality Disorder'.
To look at the issues from a slightly different angle I will use some more illustrations from my own experience. A couple of years ago I had an ongoing public fisty-cuff in 'The Age' - 'Letters to the Editor' with the father of someone with schizophrenia. This person was arguing ferociously about money being misspent on people he was calling 'the worried well' (in a tone that implied these were women). In replying (equally ferociously) I thought about everybody I know who could fit into this stupid category. I was very angry and very upset.
The term 'personality disorder' makes me feel the same way. I think 'Borderline Personality Disorder' is a dreadful way to describe women. And, I know it hurts. At a meeting in Canberra a couple of years ago a male psychiatrist was standing next to me during a break for coffee. We had previously been discussing a group of women with the label of Borderline Personality Disorder who were caught between forensic services and mental health services. He turned to me and said in a dismissive way, 'The trouble is they're just too fucked'. Later he argued that, 'We [psychiatry] can't be responsible for people's rotten lives.' A part of me agrees with him--psychiatrists are probably not the best people for this work--but we are talking about people who are in severe emotional pain here. Psychiatry might not have a responsibility towards these women but a compassionate society through its mental health institutions certainly does. Psychiatry is only one part of the system: perhaps, an over-valorised part.
A few years ago I was asked to represent the National Community Advisory Group on Mental Health at a meeting in Perth. It was a preliminary meeting of the World Health Organisation's Women's Health Committee prior to the Women's Conference in Beijing. It was a meeting looking specifically at older women's health. Non-government sector organisations interested in women's health were invited to send representatives. I sat amongst them. As far as I know I was the only person representing a group primarily involved with mental health. I learned two very politically important things as I watched and listened.
Several delegates argued convincingly that one of the reasons that resources do not adequately support older women throughout the world was because their 'dis-ease' was not named as an 'illness'. Their argument was that although undifferentiated symptoms could be enormously disabling those living with them will never attract resources within health systems while their suffering remains un-coded and unnamed.
The point being made was that if we want women's health to be on the political agenda we have to be able to compete for resources and prominence in policy through the world-wide dominant language of medicine. That is, as things presently stand, ways have to be found to express older women's health needs in terms that bureaucracies can deal with.
Despite my serious reservations about the destructive potential of labelling, I was able to see something of a pragmatic argument for diagnostic model-something of a pragmatic argument for trying to find an agreed way of explaining what is happening for someone that can be used as shorthand and to justify resource allocation.
The second thing I learned at that important meeting in Perth was that the discourse of the mental health sector is not a shared discourse. I was interested, for example, in the way that the word 'serious' was being used at this meeting. I guess I had become used to the word 'serious' being attached relatively unproblematically to the term 'mental illness' in order to differentiate between different sub-classes of people--primarily based on diagnosis.
What I now discovered was that within the public health discourse the word is used quite differently. When mental health was mentioned (and it was, often) I didn't hear the word 'schizophrenia' once, nor 'bipolar'; even 'depression' was only mentioned a couple of times. The emphasis was on those social experiences which were deemed to have particularly serious implications in terms of women's mental health: male violence, violence in relationships, childhood abuse and neglect, poverty etc.
I realised that these two discourses fail to intersect: they are parallel. In a comprehensive and just mental health system we need to push for greater communication across the current discursive divide.
Many of the more damaging aspects of the mental health system are directly connected to economic imperatives. One of the many challenges facing consumers, carers, and providers of mental health services as we approach the turn of the century is that of funding relevant and effective services and preventative strategies.
Currently, the laudable aims of the National Mental Health Strategies 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.
We all tend to recognise or identify others in terms of the familiar and the unfamiliar; the right and the left; 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:
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'.
Economic factors are important-but I use them merely to illustrate the power of language to determine our social understandings. There are no simple excuses and no simple cures for the imperfections of the system.
When I'm talking to people who do not problematise the place of psychiatry, the over medicalisation of our society, psychiatry's role in pathologising women etc. I feel impelled to question where they are coming from. When I meet professionals, for example, who haven't seriously questioned the role of social and economic power in their relationships with patients I want to box their ears.
Alternatively, I sometimes find myself caught up in debates or conversations with people who are only too well aware of the role that social, historical and economic forces play in people's emotional lives but who want to justify their own (perhaps precarious) independence from the mental health system by completely vilifying psychiatry's real or potential contribution.
At times, when I have been suffering and inexorably caught in cycles of pain I don't have words big enough to describe, I have been unsympathetic to feminist and social deviance theorists' arguments about psychiatry as a tool of the state. I have wanted what was happening to me to be named and I have resented the assumption that somehow I have a false or badly informed or na´ve consciousness just because I have recognised my own 'illness'. I have sometimes needed to understand my total lack of conventional 'success' within our horribly competitive society as, in part, a product of my battles with mental illness. If I don't allow myself this understanding I can't live with myself. In some ways without mental illness I feel even more ashamed than I do with it.
I sometimes want to jump up and down and ask these people what they are proposing to do to help the individual person who is suffering right here, right now. We are not just a social construction.
In conclusion, I would like to point out to you that what I have presented here is part of an ongoing process through which I am seeking to disentangle some of the complex social, cultural, and biological factors influencing my own experience of mental illness, as well as wider understandings and responses to that phenomenon. I have been particularly interested in how the various competing discourses tend to marginalise women.
Although my presentation marks a point in a continuing process, this does not mean that it lacks relevance or importance. Indeed, I believe that stories are always in process-we, as social beings, are always in process. There are no neatly finished borders that would make us feel comfortable and complacent with our knowledge-this is a lesson that is yet to be learned by many who occupy places of authority within the mental health system and within wider society.