Merinda Epstein - A Consumer Activist's Guide
To Mental Health In Australia
Why I am a High Profile Nutcase
Paper for Australian Democrats Forum
"....The words of the ‘loony bin’ help us (people who have been diagnosed as having mental illness) to define ourselves as a social movement (like the feminist movement or the gay and lesbian movement). Words like loony, nutcase, batty, crazy etc. empower us politically and help to create pride in who we are and what we stand for...."
Hello Phillip. Lovely to see you again. Last time I had a conversation with you was when you presided over my nuptials at the Ecumenical Centre at Monash University in 1984. That occasion was marked by a group of twenty Grade One students offering me much needed moral support, a groom in a kilt with a knife up his sock, and my sister with a bandaged arm after attempting suicide a few days previously. Twenty years and we meet again, both famous in one way or another. You have transformed yourself into a Bishop and I have transformed myself into a ‘high profile nutcase’ and a lesbian! You haven’t changed much but you mightn’t recognise me as I was much smaller then. I’m fat now – a situation directly related to unsophisticated psychotropic drugs. Learning to love yourself with your fat on is just one of the challenges faced by people diagnosed with mental illness.
My Mother has a photo on her mantle piece taken at my wedding. It’s a snap shot - one of the few of the wedding that has my sister, Susan, in it. The people in the photo are my father dressed in what he described as his ‘McEpstein Kilt’, my Mum, Susan, and two of my good friends from school days. The reason I mention this photo is that it has great symbolic value for me. Within a year of my wedding my parents were divorced in large part due to the extraordinary pressure of living with ‘mental illness’; my sister was dead and I had been diagnosed with mental illness too despite fleeing first to psychologists in a frantic attempt to de-medicalise what was happening in my life. Within five years both of my mates from the photograph had let me know very clearly that it was too difficult to be my friend any more. It was particularly painful because one of them was a young psychiatrist who felt unable to continue a friendship, which she somehow thought would cut across her professional responsibilities. They could not handle my ‘mental illness’ which I know is their responsibility but I still blame myself, constantly wondering what I did wrong. This losing of friends and destruction of relationships is another of the challenges faced by many of us.
High profile Nutcase
I sometimes describe myself as a ‘high profile ‘nutcase’’. When people are not used to hearing this they can get quite embarrassed. They get embarrassed on my behalf, which is kind but unnecessary. As much as I don’t like making people uncomfortable I persist in describing myself in this way for several important reasons:
Often we also promote the use of an idiom we call ‘person first’ language. That is, what ever symptoms and experiences we might go through we are people first and foremost. So, instead of saying, “the mentally ill”, a term which denies our personhood and sadly locks us into a permanent state of mental unwellness, please think instead about describing us as people diagnosed with ‘mental illness’. And remember, some of us will want to use the medical jargon and some of us won’t so always ask us.
People sometimes say, “why do we want to group and label people at all? Surely we are all just people!” Unfortunately, this negates the political reality of being someone labeled as ‘mentally ill’ in our society. We need our own name precisely because we are not treated just like anyone else. We are not all ‘just people’. We are treated so often as ‘less than’ and to brush this discrimination under the linguistic carpet devalues us even more. We need our own language so that we can fight for acceptance, respect and social change.
Other people caution us (often in a patronizing way) to move on from “identifying with our mental illness” (their words – not mine). I think I hate this as much as I hate anything. I choose to adopt a consumer perspective critique because of its political capacity to make things different for other people who have been labeled ‘mentally ill’. I get really cross when my politics is ‘pathologised’ and then ‘therapised’ especially if this takes place in a condescending way and especially if this is done by mental health professionals. I have heard psychologists describe my politics as ‘wound identification’. In my opinion this makes them look silly not me.
Finally, I am aware of people criticizing those of us who speak up from our own experience of being diagnosed with mental illness. They say, “there are people ‘on the streets’ and languishing ‘in jail’. People are killing themselves because there are no services. The situation is desperate so what are you lot doing using precious energy complaining about petty things like the language used often by well meaning people?” My argument is that language frames everything in our culture. My sister is dead due to symptoms of what she was happy to call her ‘mental illness’. So, I know heaps about the terrible realities but I also know that by defining her experiences as unquestionably medical (she was a fifth year medical student after all) and then reading in the journals about a dismal prognosis she acquired a hopelessness that led directly to her eventual suicide.
I know that the issues around language are complex and people who are unfamiliar with the debate will struggle to take it all in one go so I have prepared a page which might help1. You are all welcome to take one.
Nothing About Us, Without us
The motto of the consumer movement is ‘Nothing About us, Without us’. This is absolutely imperative. We talk about ‘the lived experience’ of someone who has been diagnosed with a mental illness. This ‘lived experience’ is an expertise that has long been undervalued both in society and in the mental health system. We know things and understand things about the way we experience the world that others, no matter how well they might be trained, do not know. This includes carers. If anything is going to change to improve things for people diagnosed with mental health issues then it needs to start squarely from our expertise of what it is like to live with what our Caucasian society calls ‘mental illness’. [On this note I will interrupt myself to mention that indigenous Australians and their institutions don’t ever use the term ‘mental illness’. They talk only about emotional, social and spiritual well being. As a consumer movement we are so envious of this holistic language. Many of us would like to share it if this were ever possible.]
Leunig drew a great cartoon in The Age a few weeks ago where he pointed out the power of ‘naming rights’. The gist of his comment was that if naming the ‘something’ is invested in you or your profession or your organisation this gives you enormous power in our society. Over the past decade there has been much naming going on in the name of mental health service reform. The rhetoric produced by this is often an illusion but sometimes it needs a consumer critique to expose it. One of my favourite ones was when it was popular for bureaucrats to talk about ‘seamless services”. The concept they were trying to name at the time was a service delivery system where the different parts of it actually talked to each other. However, at a most memorable meeting when I was still a rookie nutcase, an old time campaigner shot back:
“Ï know what seamless services are,” he said, “they're services that seem to be something but are less than what they seem!”
In recent times the new term, which I abhor, is, “Mental Health Literacy”. As someone who in another life was a specialist literacy teacher I wish to say that literacy was never and should never be about learning orthodoxies. However this term has been appropriated in a mental health context to mean, “teaching the community to accept unchallenged a medical model understanding of mental distress”. From my perspective this is outrageous. But, nobody much is listening to our critique because it is coming from a grossly under-resourced consumer community who have almost no naming rights in mainstream psychiatry.
The metaphor that I have used now for some time is the parable of, ‘The canary down the mine’. In the 19th Century miners took canaries down the coal mines because these sensitive little birds would die as soon as the air became polluted enough to badly affect the miners. The death of the bird would be a signal to get out. I believe that in a similar way people who have been diagnosed with mental illness act as a safety valve for our contemporary society. We are, it could be said, the exquisitely sensitive ones who are susceptible to reacting to the social and cultural world when it is sick or polluted. Sometimes we die like the little canary but more often we get stressed in ways that are called ‘sick’. This is a fundamentally important social role we play that our culture insists on only pathologising. How different it would be if sometimes it could be understood in these different terms as a great service? Unfortunately there are many putrid things that happen in our social world that are taken for granted except for the human canaries who pay, sometimes with their lives.
When I say this I am in no way belittling the degree of pain and anguish so often experienced by people diagnosed with mental illness. In my opinion we cannot support a sociological critique of medical model understandings which offers nothing to those who are often service-less and desperate. Such a non-reflective sociology of difference is as much an outsiders gig as the worst of the ‘medicalising’.
I have a friend who is very happy with the medical model way of understanding her experiences. She freely says that she has Manic Depression – a term which she prefers to Bi-polar Disorder. It is imperative for her to identify a distinct illness, which has nothing to do with who she is as a person. In her judgment it’s just an unfortunate add on to her life which she deals with successfully by taking Lithium, getting enough sleep and other maintenance practices she has learnt. Indeed she has just written a really useful book about living well with Manic Depression.2 However, there are other people whose experiences are very different from this. For some of us such a medical model, dispassionate understanding of our distress does not fit at all. This is partly because psychiatry is such an imprecise science. I have had fourteen different diagnoses during my ‘career’ through mental health services. Some of these, particularly the personality disorder type diagnoses, have left me feeling wholly exposed – as if my very being was evil and my personhood corrupted. If it is your personality that is pathologised then what is there left? It is perhaps not surprising, therefore, that the language, which is reassuring for my friend, is extremely uncomfortable for me.
Unfortunately, the crux here is, in part, the debate around legitimacy and in turn this melts down to a debate about resources. A crude attempt is being made to differentiate between the ‘mad’ (read: ‘real mental illness’) and the ‘bad’ (read: behavioural or ‘stacking it on’). One of the places where this is played out is in Detention Centres and even a cursory reading of the comments made by Minister Vanstone over recent weeks in relation to self-harm is indicative of this linguistic trickery. However, it also happens within mental health services. In order to prioritise resources people with certain diagnoses, particularly Borderline Personality Disorder, are being vilified, refused services and described as not having serious ‘illness’ despite their manifestly severe expressions of psychological distress. In a recent mental health text Anne Olsen and I argue that: “… a new kind of stigma has emerged within mental health services. It relates to legitimacy: the mark of infamy is not now that of being ‘mad’ but rather of not being ‘mad’.3
On my way to my Mother’s a few weeks ago I was following a truck. On the back of this truck was brand new signage which said, “CAUTION: truck permanently stopping”. I thought this was worth remembering as a symbol for the progress of mental health policy and practice in this country but I don’t want to finish in this abstract place. I want to finish back where I started; with my family. I am now on a disability pension and work a couple of days a week for the Mental Health Legal Centre which is a fantastic organisation. Being on a pension is still excruciatingly shameful for me despite my self-talk and flamboyant public comments to the contrary. I see a psychiatrist regularly which is my choice and I take medical drugs which is also my choice. She bulk bills me. I am extremely lucky and am prepared to drive from Footscray to Eltham to see her regularly. (There are almost no psychiatrists and certainly no psychotherapists in the western suburbs where I live). Sometimes I worry about my privilege but know she’ll have a use by date and by that time I will have satisfactorily trained her.
However despite my personal choices, I write and speak frequently with people who have been labelled mentally ill who have found services extraordinarily destructive and will no longer submit themselves to that danger. For these people a campaign to provide more services of the same ilk as those already existing has no appeal at all. Many of my friends who have experienced involuntary treatment, for example, guard fiercely against it and argue that in the past it has done them irreparable harm.
My father had Bipolar Affective Disorder and he was also a much loved and competent Haematologist/Oncologist in Melbourne. Imagine what would have happened if his illness had become public knowledge in the 1960s and 70s. On lithium he stayed well until Susan got sick and he felt genetically responsible. There are two active nutters in Victoria who had fathers who were Oncologists. Perhaps this might be the business of some psychology student’s prospective PhD. In my teenage years Susan’s distress was a very powerful element in our growing up family, but it was only later, much later, that I recognised that through her ‘illness’ the rest of us had a perfect foil for our own escalating madness. Because she had the diagnosis we unwittingly projected our ‘stuff’ on to her. She was asked to carry the emotional stress of the whole family. Later, the same thing was to happen to me in my marriage. This tendency for those of us who have been diagnosed to absorb the madness that surrounds us in the world is a phenomenon that urgently needs further exploration.
For a useful discussion on language
from a consumer perspective please see: Pinches, Alan “What’s
in a name? Well when it comes to that widely detested tag,
‘consumer’ …quite a lot actually.”
Lifelong Journey: Staying Well with Manic Depression/Bipolar
3 Olsen A. and Epstein M. in Burrows G. and Singh B. Mental Health in Australia; Collaborative Community Practice, Oxford University Press 2001 p. 17