The year is 2016. I am a single woman living alone and supporting myself with the income from my job. I have no children and do not want or expect to. I work full time, have a Masters degree and have written three published books. I identify as part of the Asexual bit of the Queer identity. I am an out loud and proud Autistic. I also have some kind or atypical schizophrenia which is mostly controlled with medication. From time to time, I need to go to hospital because of my mental illness. I spend a few weeks there and then go back to my home. I consider myself independent.
A couple of months back I had an appointment with my psychiatrist (an older man who shows me respect and care). I reflected that the medication I take to control my illness was not available until fairly recently and that had I been born a couple of generations ago I would have probably lived in an institution. The doctor looked at me and said something which profoundly affected me, He said ‘Yes. You would. They would have got you working in the kitchen because you are reliable.” Just like that, my hypothetical past self, with all the intellect and empathy and wisdom I have, confined to an institution where her greatest achievement would be to serve a roast dinner to the other inmates (and I use that term deliberately) of an institution, all of whom were destined to spend the rest of their days there. I won’t even start on the sorts of abusive ‘treatments’ which were used on these people who had the terrible misfortune to have a mental illness – or as I understand, for some people just to have some eccentric or divergent issues – and live in time before effective treatments and somewhat improved attitudes.
I have probably spent well over a year of my life in the more modern psychiatric hospitals, where most people only stay for days or weeks rather than eternity. One thing I have always noticed among the majority of my fellow ‘consumers’ (how I hate that word!) is the level of intellect and sensitivity we share. I can’t help but imagine all those people in those monolithic institutions, being served dinner by ‘reliable’ Jeanette.
I paint a dim view of the past, but this is not to say the present is anywhere near faultless. I have had my mental illness diagnosis for 21 years – half of my life. I have seen some changes in psychiatric care (and at times ‘care’). My first admission was in a psych ward was in a hospital most of which was disused. All the men slept in a big dormitory and all the women slept in another. I spent most of my time alone in the high dependency unit. My friends from the Somebody’s Daughter Theatre Company (one of whom has an Order of Australia) apparently had to argue with nurses to allow me to have drawing materials. The materials were certainly not toxic but rules were rues apparently. The nurses barely spoke to me. The doctor saw me twice and on the second occasion said site matter of factly, ‘you have schizophrenia You will need to take this medication.’ ‘How long for?’ I asked. He didn’t know. I was given a case manager but I lived in the country and didn’t drive and the case manager was two hours’ away form where I lived. The woman I boarded with drive me there once and then never again. So technically I had a case manager but I could’t get to him. We didn’t have the internet then. I was not given any information on what one was supposed to do when diagnosed with schizophrenia. I figured I would work it out for myself.
A year later I got quite psychotic and spent three months in hospital. The first one I went to kept me for a month and then deemed me fit to go home. I wasn’t and within less than a week ended up in another hospital. The chief psychiatrist there seemed to be obsessed wth borderline personality disorder, diagnosing most of his female patients with that, including me. (Funny that borderline is so rarely diagnosed in men and boys). My parents told the psychiatrist my two diagnoses (Autism and schizophrenia) but apparently they were wrong about their only daughter who they loved and knew better than pretty much anyone. I got the borderline tab which resulted in my acting on intrusive thoughts about violence being seen as attention seeking and manipulative. I ended up in prison, then became so institutionalised and hopeless that I probably would have liked to be ‘reliable’ Jeanette in the kitchen of the asylum, safe from terrifying freedom. I managed through a combination of my own determination, faith, parental love and a good whack of luck to escape that awful world. I lived in residential services for people with mental illness for many years but eventually got to a point where I reenrolled in university and began the journey to where I am now.
I did not spend time in any psychiatric ward between 2002 and 2010. I became extremely unwell in 2010 and found it almost impossible to get help. The services which were all too keen to put me in hospital in my twenties now saw a high-performing, professional person that they hadn’t met before so therefore must be OK. I kept getting taken to the mental health assessment unit by police and ambulance and being asked by the staff if I was going to work. When I replied that I was, they sent me home, where I was terrified and close to acting on some of the evil thoughts I had. I believed I was in purgatory, that God was punishing me. I couldn’t use the appliances at home because I thought they were cursed too. Yes, I was going to work but short of that my life was a horror movie populated by ghosts and demons with apparently no way out. I thought the shadow life I had would keep going until I died. Even though I asked for help, none was available because apparently I didn’t fit the typical picture of what mental illness was supposed to look like.
Eventually my mum came to help. She advocated on my behalf and made sure I got assistance. But what happens for the people who don’t have someone to do that?
When I ended up in hospital I could tell that things had change a bit but the basic issues were still there. The lack or respect for the patients and our families, the paternalism, the control and assumption that we are dangerous. When I was discharged I got placed with the public mental heath service. All the doors to the consulting rooms were locked and the receptionist sat behind a glass screen, presumably because we were dangerous. They don’t have the glass screen at pubs and alcohol can facilitate violence but I guess public mental health system users have less clout than drinkers.
I spent five years in the public system before I realised how unhelpful it was. I found myself a great private psychiatrist (there is no glass screen or locked doors at his clinic incidentally). He has done something no other psychiatrist has done with me and that is tell me the long term physical effects of some of the medications I take and work towards getting off the medications which cause a significantly increaser likelihood of osteoporosis and the one which has an effect of dulling my intellect.
I have trained the crisis team to understand how to work with me. This was a conscious act after many negative experiences.
I have managed to make things workable with my mental health and the services I use. However I know I am unusual. I have a good income so can choose a private doctor. I am insightful and confident, so if things are going wrong I can steer them in the right direction. I am extroverted, enabling me to speak up. I also have some standing in the community, so if mental health services were being horrible to the 2016 ACT Volunteer of the Year (i.e. me) it might possibly be newsworthy. Sadly most people who use public mental health services are not really newsworthy. Like prisoners, they tend to have fewer social connections and supports and be more powerless to advocate for themselves.
So thankfully I am not working in the kitchen in the institution because I am ‘reliable’, but mental health services still have a long way to come in my view. People with mental illness deserve respect and support but often this doesn’t happen. We are getting better at talking about mental illness as a society – particularly anxiety and depression – and that is fantastic. Change is certainly happening incrementally and my recently experience of mental health services was superior to my experience in the 1990s. Mental health services do still need a lot of attention to make them inclusive though. Just as my Autistic public persona will say ‘nothing about us without us’, so too will my public persona with schizophrenia because the principles of inclusion work similarly. We have come a long way but we still have a long way to go.