Merinda Epstein - A Consumer Activist's Guide
To Mental Health In Australia
If, When, How .... Disclosure of Disability in Employment
30 November 2005
"....I thrived once I made the decision to be ‘out’ and up front about my psychiatric history but this does not mean that this is necessarily the right path for everyone. ... For the past 10 years and more I have been working successfully in and around the mental illness industry. I am proud of being a ‘High Profile Nutcase’. There is no more need for me to try and hide my identity. My experience of being mentally ill is part of what I bring to my work and it is valued to a greater or lesser extent by all the organizations I have worked for since that tumultuous turning point. This has not been all easy sailing. Some of these positions have been extremely difficult because they have been in organizations who proffer an organisational rhetoric of consumer participation rather than a culture that actually practiced it. "
This story starts with a sequence of events that happened to me whilst I was lecturing in the Education Faculty at Deakin University in the late1980s. The tap root of this experience went back as far as my first experiences at university as a student, in schools as a teacher and in the world as someone with what doctors call ‘a mental illness’. Two separate processes were happening simultaneously as I tried, sometimes in vain, to navigate myself around the challenges of University and then work.
Firstly, I did not know I had a disability in the early days. This was not a matter of some sort of pathological refusal to accept my illness rather, I believe that everyone has a bit of mental illness and everyone has a bit of mental wellness as well. The critical question becomes, ‘at what point do you move from not being mentally ill to being mentally ill? It is an unanswerable question. I have had fifteen different diagnoses and the fifteenth one; a condition called; ‘there’s nothing really wrong – Hypochondriac Judgment Disease”, has perhaps been the most personally challenging. It’s difficult to disclose something you’re not sure you have especially if it fits into that category of chronic illness which, according to the medical profession, has questionable organic roots.
Secondly, the idea of disclosure is not as straight forward as it seems. Looking back now I am certain that there were occasions when this thing that Judy Horacek appealingly calls ‘Kevin’ and which others call psychic distress or ‘mental illness’ exposed itself to others totally adrift from my intentions. I doubtlessly at times during such periods continued to believe I was doing OK. The ‘mental illness’ industry uses this horrible term ‘insight’ which denotes that when you look at yourself you see the same thing that doctors see. Its one of the words that I find offensive but I do think that all of us sometimes find it difficult to project ourselves into the heads of work colleagues and view ourselves from this vantage point. This is particularly difficult if the person you’re trying to ‘get into’ is your boss and if what you’re anxious she might be seeing is socially feared, uncertainly dealt with and steeped in judgmental rhetoric and sometimes blatant discrimination.
However, up to the time of the sentinel series of events whilst I was at Deakin I had told very few people in any of my respective work environments about my psychiatric status. I thought I was pretty good at managing my own ‘stuff’. Gradually over a number of years my patterns of emotional and psychic distress had become more regular and predictable to me. Eventually I found it a bit of a mixed-relief to name it as ‘mental illness’ for myself and a bit further down the track I found it also a relief to name it myself as a ‘disability’.
At the stage these events happened at Deakin my marriage was breaking down and my husband was putting it down to my mental illness. Far too many people whom I now feel should have known better were implicit in my tendency to turn a blind eye to the many other things that were going on including my husband’s violence towards me, my infertility and our multiple failures on the IVF program. My husband was putting enormous pressure on me not to disclose my madness to anybody. His efforts to hide me were quite extraordinary. He saw himself as the protector of our social standing in the community. In many ways he was more ashamed and distressed about the wicked potential of my madness to destroy what he saw as ‘our world’ than anything else. He was partially trying to protect me in his own paternalistic sort of way but he was also keenly aware of the need to protect one household revenue stream and he saw my potential disclosure at work, as a definite threat to our income.
Breakdown at Work
It’s hard to describe the sort of mental melt down I was experiencing during my second year on the staff at Deakin to someone who hasn’t lived through it themselves. It was like I was working harder and harder and harder but that everything was happening within a vortex of such utter psychic distress that nothing was moving, and I was drowning. I was lucky. I had my own office so I used to arrive in the morning, close the door, and sometimes I would lie curled up in foetal position all day, praying that no one would come in. When they did I was usually able to act my way through short encounters, praying again that they would soon leave.
Within a busy university environment I simply couldn’t keep this up. I was exhausted. So, with great trepidation I approached the person who was running the student counseling service and to my total discomfiture I pleaded for help. I remember this man really well. He wore socks with his sandals, had a Scottish name and was trying very hard to be groovy with the students, most of whom were female and in their early 20s. After talking to him for a while he pronounced that what I needed was a ‘really good fuck’ (his words). I couldn’t believe what I was hearing. At first I didn’t even question the appropriateness of this remark. He was the student counselor. It should have been the safest place on campus to disclose my status. In retrospect I know his behaviour was appalling but at the time I did not. With this further assault on my self-esteem I tried to press on.
One of the things that happens for many people who experience mental and other debilitating chronic illnesses is that the external discrimination we experience is internalized and in this way we start to discriminate against ourselves – subtly starting to tell ourselves that we are unworthy. It is extremely difficult under these conditions for many of us then to complain using the official channels to which we are all entitled such as anti discrimination and equal opportunity legislation. The way I was feeling at that time I encountered this man I could not conceive that I should be allowed to have anything, let alone a right. In addition, I could not formally complain about his behaviour for to do so would have meant me disclosing my mental illness status to the entire university. I had no intention of doing that.
After this encounter I slid deeper and deeper into despair and desperation, somewhat mysteriously finding myself very ill in a psychiatric hospital. My husband took this opportunity to move interstate. He was adamant that he was now totally unable to cope with a ‘mad wife’. I then felt I had to tell someone. I was lonely and desperate. I had chosen not to tell my family this time – believing they would complicate the situation. Instead, I disclosed to two fellow academics whom I thought I could trust. They were confused and ambivalent. They wanted to be supportive but they didn’t know how to do it. I have learnt since that it is very difficult for people if you ask for help and support and are not able to be specific about what this support needs to be.
That year was bad for me. Part of me desperately wanted to maintain my secret. I still believed the social half truth that I was only worthy if I was able to present to the world as a sane, healthy, independent, heterosexual woman and I was now feeling none of these things. Unfortunately, in trying desperately to keep something silenced that could not be silenced I ended up asking my colleagues and friends to lie for me. I got caught up in my own fabrications as I tried to keep people off the scent of my reality. For example, I asked my colleagues who were ‘in the know’ to monitor phone calls coming in to the faculty from my husband who was now living in Sydney. I did not want him to know I was back in hospital. I needed at least this authority over my own life. I knew he would wonder why he couldn’t get hold of me at home and I asked again that he should be told that I was on holidays.
Once rumors got going they ran rampant throughout the university. Over a short period of time it became unbearable for me. In the past I had always used the same technique and that was to bail out of workplaces when exposure seemed imminent. I feared this truth of wholesale revelation more than any other single thing because at that time, I told myself, this would signify the death of me as I wanted to be known.
Department of Labour
I moved quickly into a position in the Department of Labor in the Women’s Employment Branch dropping out of the PhD I had started whilst at Deakin. However, I fared similarly in this position where I again found myself fighting for what the outside world calls ‘sanity’. It was an uphill journey especially as I was so determined to keep my status secret. However, my strategy of moving from job to job to preserve this secret was not a good one. It did little more than save me from imminent exposure and then throw me into a new workplace where I knew nobody and which harbored the stress of starting again from the beginning. Not unsurprisingly perhaps my illness leapt with me but this time I was located in a Government Department building with glass walls and communal workplaces. The only place I could find that was private was the toilets. I spent an inordinate amount of time there; hiding. I tried hard but unsuccessfully eventually overdosing on prescribed drugs in my toilet sanctuary. I was found, an ambulance was called – and then everyone knew. I was no longer in control of who knew what about my life and my illness. With everyone talking in worried (and sometimes inquisitive, excited) whispers I was admitted to Footscray Psychiatric Hospital as an involuntary patient.
To my utter surprise I found I was tremendously relieved that everything was now out in the open. My immediate boss came in once a week for the four weeks I was in hospital. My colleagues came in and they weren’t scared of me. I was surprised that I was pleased to see them. They coped fine with seeing me in this environment and all my ex-husband’s predictions about the inevitable consequences of disclosure seemed to be wrong. However, there was one incident I will remember always. It happened at 7.00pm on a Thursday. (I’ve got no idea why I remember that bit of detail!). The head of our section had come in to see me. He was a very good man. I was lucky. It was about three weeks into my stay and I had pretty much got the hang of how to most successfully do ‘patient’ in this pretty awful environment.
Without any warning a nurse came in and informed me she was going to search me and my things. She was looking for contraband. I had been home for a visit during the day and I had picked up a packet of Panadol because I had a headache. I knew I should not have this. Old, experienced stagers have told me since that I should have put it in my shoe. In front of my boss she frisked me finding nothing untoward on me. She then stepped forward to go through my things in the cupboard and I realized she would find the Panadol. I panicked then and stood in front of my cupboard trying to block her way but she had no intention of relenting. My boss, who I hardly knew really, stepped over and held me away from the cupboard. I think he was as horrified as I was terrified. He led me away from the cupboard and just held me as I burst into tears of frustration and humiliation.
My contract with the Women’s Employment Branch came up for review about three months later. This nice man, my boss who had held me so gently in hospital, came to me and told me he couldn’t recommend that my contract be renewed. He had diligently documented all the things I had stuffed up whilst I was sick and before my distress erupted publicly. He painstakingly went through it with me but I was so shut down that I didn’t take in any of it. All of these failures were directly related to the acute episode of mental illness I had experienced whilst working there. I still have his document somewhere. I didn’t read it again at the time. I couldn’t. I still haven’t. All I really remember from this episode in my life was that I hated myself so much that I believed I had nothing left to offer any organization. There is no way I would ever have questioned his judgment. I believed he was right simply because he was still nice to me even after finding out who I really was. This is how I lost my job. Is this discrimination? Is it something else? I don’t know.
After School Program
I then experienced six months of unemployment where my self-esteem continued to plummet. I got a part time job as a worker in an after-school childcare program. This was not stressful but it also provided me with a rapid education in humility. I tried not to get resentful when I was treated like a dill by primary school teachers who could well have been my students a few years previously. I was offered a little sessional lecturing in the post-graduate Bachelor Degree on a different campus of Deakin and had my first laugh for ages when I found in my evening class one of the teachers from the school who had been most snobby towards me in my role in the After-school Program. I didn’t tell anyone at the school about my mental illness and was terrified of being exposed by two of the parents who were both psychiatric nurses I recognized from my stay in Footscray.
Coming ‘out’ as a nutcase
Towards the end of this six month period, something happened that would change my life completely. I saw an advertisement in The Age and cut it out. This organization that I had never heard of; the Victorian Mental Illness Awareness Council (VMIAC) was looking for someone with experience in social research who had first hand experience of acute psychiatric hospital practice. Was this written for me or what? I did not once think it might have meant experience as a doctor or experience as a nurse; you see my basic sense of self was redeemable. I just assumed that what they wanted was first hand experience as a patient. It might have been particularly naïve of me but later I was to find out that I was in fact spot on. The Victorian Mental Illness Awareness Council is the peak group for people with psychiatric disabilities in Victoria.
This was the start of a new life chapter for me. I didn’t get this job but I found a consumer movement that has been instrumental in my life ever since. I would never again apply for a job where I was not from the beginning ‘out’ as a nutcase. For the past 10 years and more I have been working successfully in and around the mental illness industry. I am proud of being a ‘High Profile Nutcase’. There is no more need for me to try and hide my identity. My experience of being mentally ill is part of what I bring to my work and it is valued to a greater or lesser extent by all the organizations I have worked for since that tumultuous turning point. This has not been all easy sailing. Some of these positions have been extremely difficult because they have been in organizations who proffer an organisational rhetoric of consumer participation rather than a culture that actually practiced it.
I am now working for the Mental Health Legal Centre part time. I am paid for two days a week and I stretch it out over three because I need to contend with the side-effects of psychotropic medication which make it extremely difficult for me to get anywhere early in the morning. This is, quite frankly, a fantastic place to work. I have learnt some of my lessons and am on a Disability Pension as I know, as much as I don’t like it, this precaution needs to be in place as a safeguard for when I get ‘ill’ next time which I now reluctantly accept is probably inevitable. With the changes to the Disability Support Pension and the horrible ‘welfare to work’ reforms I can no longer see any opportunity for me to try again to be independent of this Government money. If I do and things go wrong with my health I would never get back on the DSP again except under hopelessly inadequate conditions which would, in turn, put a pressure on me which I now believe my psyche could not handle.
At the legal centre I have made an Advance Directive. I can not emphasize this enough for people with mental illness and other disabling chronic illnesses. This is a document that I have drafted with the help of one of the lawyers but you don’t need a legal person particularly if you have a good relationship with managers where you work. My Advance Directive clearly indicates to everyone I work with what I need them to do if I get ‘sick’ at work. It has details like the name and contact details for my psychiatrist, an emergency number for my brother, what medication I need immediately and to encourage me to take it; information about how to get me home (because I know I shouldn’t drive when I am really upset or after sedating medication) and instructions for someone to get my car home when they can, for example.
I have had this Advance Directive in place for three years now and it has been used twice- both times smoothly and with no lasting damage to any of my important relationships either professional or otherwise. People in key positions at work feel more confident with this document in place. I do not like having to take these sorts of precautions but I don’t like having a mental illness either. I can’t change this. I have to live with it and an Advance Directive is now, for me, imperative because it enables me to remain as empowered over my own life as possible during difficult times. Trying to hide my reality is no longer an option for me. I see myself as manifestly ‘out’ both as a lesbian and as a nutcase.
I thrived once I made the decision to be ‘out’ and up front about my psychiatric history but this does not mean that this is necessarily the right path for everyone. I had privileges in terms of class and education. I am sure that my choices would have been much more limited if this had not been the case. Also, I now have a network of friends with an interest in bringing about deep structural and cultural changes to the way health systems and society operate in relation to mental illness. In this way we are all ‘out’ together which has made it easier.
Working in the mental health field in positions which to a greater or lesser extent encourage people with mental illness to apply is much safer than disclosing if you are trying to be a surgeon, school teacher or museum curator. I have a good friend in Sydney who, like me, is also ‘out’ both as a lesbian and as a nutcase. As a practicing G.P, I find her courage inspirational. Ten years ago she became manic at work and lost her registration to practice. It took her eight years to get it back and now she has about seven pages of special conditions attached to it. Despite this, she is back practicing. All I can think is that those patients with hidden disabilities, psychiatric or otherwise, who have the good fortune to have her as their doctor are very lucky indeed.