From 2009 until my retirement in 2016, I worked for the Mental Illness Fellowship of Australia, a job that involved constant travel, to every part of Australia. The most frequent destination was Canberra, because my core task was to influence the federal bureaucrats and politicians there who dictated policy and funding for my member organisations and the people they served.
I really enjoyed being a Canberra lobbyist, but for me the best part of my work was meeting individuals and families faced with severe mental illness. I was continually blown away by their bravery, creativity and sheer doggedness. Because of my job, and, I hope at least in part, my ability to listen, people felt free to tell me amazing stories of grief, loneliness, hope and, sometimes, triumph over the odds. I want to share just a few examples.
The nail technician
We were all getting grumpy. The plane had been sitting on the tarmac at Townsville for about 15 minutes, since the captain had announced we were still waiting for one passenger to board. Then there was a very glamorous woman in the aisle, apologising loudly, flashing a huge smile and much else as she sashayed towards me. Two big shopping bags, loads of bling and dramatically high heels; no-one could resist staring as she checked the seat numbers. Then she was standing right there, asking if I would mind letting her get into the window seat, and would I help her put her heavy bags in the luggage lockers above us.
For ten minutes or so, as we taxied and took off, I continued with the games in the Qantas magazine. Sudoku conquered, I glanced over to see that she had the most preposterously elaborate fingernail decorations, green and three dimensional, like tiny cream-cakes on each nail, topped with glitter. I asked her how she kept them from being damaged, and she said they would be unlikely to survive more than a few hours, which was partly why she wanted my help stowing the bags. So why? She had been the lead judge at the nail technician of the year finals for North Queensland, and had volunteered to be the model for one of the contestants. This over-the-top adornment was in fact the winning entry.
Ok I confess. I hadn’t expected a riveting conversation, but I was wrong. She had a very successful business on the Gold Coast, and worked as a visiting expert in other salons, hiring herself out at $180 an hour. Her business knowledge sounded very impressive, she lectured and demonstrated her craft across Australia and she was the reigning President of the relevant professional body in Queensland. She owned her own home, and had a bought a house for her mother. And she hadn’t even finished high school.
Then she asked me about my job. I told her about doing my bit round the country to improve services and build community understanding and acceptance that mental illness is everybody’s business. She listened very quietly. After a while she asked me to move so she could go to the toilet. When she returned, she sat looking out the window for a few minutes, until the staff brought us a snack and drink. I turned to find her looking at me intently, and I noticed beads of sweat above her lips. She was clearly very tense about something. As soon as the cabin staff had left she said, ‘My mother has schizophrenia. I’ve been looking after her since I was eight years old.’ A few words for a world of hurt. A few words to remind me yet again not to make assumptions.
At eight, her father disappeared. Her mum had been admitted to the local mental hospital several times after suicide attempts by then, and now this girl in year three primary school had to take over. With a much younger brother to look after, as well as a mum who could barely get out of bed most days, she often got to school late, but her mum made her promise not to say why, ‘Or else the welfare will put you and your brother in a home, and lock me up.’ All through her school years she was afraid every day; that her mum would kill herself; that her little brother wasn’t safe, that she would fall so far behind in school that she would never be able to get a job; and worst, that someone would find out about her mum.
When she was about 15, someone did report the family to the welfare department. Luckily, a recently established community mental health program on the Gold Coast decided to help her keep the family together. In her last year of high school, at last she could go to school knowing that a support worker would visit her mum, and a family day care family would look after her brother until she picked him up after school. With that support, she got to the school leaving age, then decided to go to work.
Now at 34, she was at the top of her profession, and financially secure. As community programs came and went, she had found herself having to re-negotiate home care and accommodation for her mother time and again, until she decided she would pay for it all herself. She bought a small house near her own home, gave it to her mother, and paid for a care worker to visit every weekday. Her mother’s mental health was not improving, and her physical health was deteriorating rapidly, but ‘I’m going to be there for mum for as long as she needs me.’
The plane landed, and I helped her get her bags down. She said ‘Thanks for that.’, and commenced an exit just as dramatic as her entrance. I looked around and saw every male, and many female eyes following her. I wanted to tell them all, ‘She’s so much more than you’re thinking.’
The most dangerous woman
Janet is a well-known activist in mental health circles in Australia, and has been for close to forty years. Although she is hugely respected, she can scare the daylights out of people she disagrees with; famous for some blunt, public put-downs of fellow-activists, senior bureaucrats and government ministers alike. So I take it a sort of badge of honour that she appears to consider me an honourable and sensible person, most of the time at least.
While living in a convent as a nun, in her early 20s Janet had her first psychotic episode. For the next 15 years, she spent more time in secure mental hospital wards than anywhere else. Her schizophrenia was almost unremittingly severe, and she became known as the most dangerous female patient in the New South Wales system. In the notorious Gladesville Hospital, for most of the 1970s she endured;
‘Horrendous abuse, emotional abuse, physical abuse and sexual abuse—years later when I contacted as many people as I could that I knew had been there and I only ever met one who hadn’t been sexually abused.’ (‘All in the mind’ interview, ABC Radio December 10, 2017)
Janet described to me the moment she began to believe there might be a way out of this. A nurse gave her a remarkable chance, by taking her to his family home at Christmas time, without telling his superiors. She was allowed to hold his newborn baby throughout the evening. One person treating her as an equal, and risking his job to do it, was her turning point.
In 2015, after some debate, Janet agreed to come with me to Parliament House in Canberra, to be the guest speaker at an event I had organised. We sat together as social chatter over breakfast went on between politicians from all parties and their chiefs of staff, some senior bureaucrats, drug company representatives and a few of my national advocacy colleagues. She was very tense, and whispered to me that she was going to say things she had never said in public before. Was I sure it was the right thing to do? I told her it was essential information for these people to hear first-hand, if she was up to it. I did the usual introduction, mentioning her AM award in the Australian Honours system, and her appointment as a Commissioner in the recently established National Mental Health Commission. She stood at the microphone, not speaking for a few seconds, looking into the middle distance, and now it was my turn to be tense. She breathed in, and started talking.
For the next 20 minutes there was no sound except her voice. A quiet, clear voice saying horrifying, scary, sad and also very funny things. All clatter of plates and cutlery stopped. Food halfway to mouths stayed there going cold. I watched faces, and saw tears, hands at mouths, deep breaths being taken, heads shaking and everywhere, utter absorption, even among the serving staff. When she finished, there was an eruption of emotional applause. In my job, this was the sort of impact on funders and policy makers that really changes the conversation. A woman who could have been your sister or mother, who had come back from hell to let us know we had to do better in future.
The first question was ‘Do you still hear voices?’ She looked at me, and after a few moments hesitation said “All the time—it’s happening now. A voice just told me not to be so fucking stupid talking to you lot about this. Of course, we people who hear voices rarely say this, because you all get so anxious about it. We usually lie even to our psychiatrists about it, because they just want to increase or change your medication. And most of us know better than they do what medication and in what dose works best for us. I’ve had 50 years of practice with that one. I don’t like being this fat, but for me, olanzapine, with its well-known weight gain side effects, is an old and trusted friend, so I’m prepared to put up with not having a girlish figure.’
As the breakfast broke up, staff and politicians all going to their frantic rounds of sittings and meetings, people queued up to shake Janet’s hand. Emotions were still high. It is people like Janet that really change minds and open hearts. Afterwards she asked me if she had made any sense. I just hugged her.
The taxi driver
There are so many taxi driver stories I could tell. Probably more than any other situation, these times showed me that mental illness is virtually every family’s business. And even now, retired, it keeps happening. Last week in Melbourne, a long slow trip from the airport started with a typical discussion of the impact of Uber on the taxi industry. This guy, a recent migrant from Lebanon (with remarkably good English, and fluent in French and Arabic) explained without complaint how his income had reduced in three years from a net of $70,000 a year to about $45,000.’Uber will win in the end, and who am I to say that is not better for everybody?’ He has a wife and three children, and I asked how the family got by.
It was getting very difficult, since his wife had been forced to give up work a few months before, ‘because of a family problem’. Then he asked me about my life and work. I was on my way to a board meeting about mental illness policy, and briefly summarised my previous job. As soon as I stopped talking, he said ‘The problem is our eldest son has schizophrenia. He responds best to my wife, so even though her job had been paying better than the taxi income, we agreed she should stay home to look after him.’
We had reached our destination. We sat and talked for a few minutes, him hoping his wife could find some supports for their son so that she could work part-time, me offering a few suggestions about services I knew of in their part of Melbourne. We shook hands warmly, with strong feelings in the air, and he drove away for another long night-shift.
I mentioned above the meetings I organised in Parliament House in Canberra. One speaker was a middle-aged mother, whose son had paranoid schizophrenia. I think it was ‘Carers Week’ which was a good opportunity to get the attention of politicians, particularly to sensitise them to the load that families carry when one or more members are coping with mental illness.
She talked about her son, how he had been top of his class in school, great at sports, and an outgoing, personable young man. In first-year university, it all went pear shaped when, apparently without warning, he became psychotic, an episode that lasted for many months while he was in hospital care. I say ‘apparently,’ because many people begin to remember that things had begun to change a bit earlier, sometimes years earlier, but put that down to the usual turbulence of adolescence. And it’s true–most boys who shut themselves in their room and play loud music with dark lyrics do not have mental illness.
Anyway, her boy did, and when he came home from hospital, quiet, getting fat, disinterested in any daily activities and ‘talking a bit weird’, she had to think long and hard about how to do this. A single mother, with a reasonable income, she decided that her dearest love, her only child, would never be thrown out of his home, no matter what. That commitment was to be severely, and repeatedly, tested.
Her son began to get into trouble with local people, first by talking loudly to himself in shops, then by abusing a neighbour he believed was spying on him. The police were called to the house several times, and his voices began to tell him that his mother was plotting to have him locked up for ever. Luckily, she had access to a carer support and education program, and had learned a bit about psychosis, what is happening, what to expect, and how to communicate with a person hearing voices.
Matters came to a head when he came into the kitchen one afternoon, got a large knife from a drawer, and told her that she had to stop scheming against him, or he might have to kill her. He told her this while cornering her by the refrigerator, with the knife pointing at her stomach. She said roughly this:
‘You and I both know that the voices are not you. I know some of them are very important to you, but they are not the core of you. You and I are always going to be together because we love each other. So maybe the voices have got a bit mixed up on this one. You know in your heart I will never hurt you, and you could never hurt me.
Now, I know how hard it is for you to concentrate with the voices all talking at once, but I’ve seen you do it. I’m going to go for a walk around the block, and I’ll be back in about 10 minutes. In that time, just try to calm down and think about the lovely tea we are going to have together, before we watch the news and then maybe try a crossword. Can you do that?’
He backed away, and she walked slowly out of the room, her back feeling like the easiest of targets, Outside, shaking, she briefly considered calling the police, then decided this was her life to manage, whatever the risks. Ten minutes later, breathing a bit more easily, she came back to find him sitting quietly in the loungeroom. She walked over, kissed him on the head and said ‘I love you.’ He said ‘I love you too mum, can we have tea now?’ She excused herself to have a shower, where she sobbed for a while, then they had tea together.
I was sitting next to a cabinet minister in the conservative government, a curious blend of a man who was both a right-wing hard enforcer, and someone who had recently revealed he had been fighting depression for several years. He turned to me and said, ‘You’ve brought along some interesting speakers to these meetings David, some of them so-called’ experts’. But none of them can hold a candle to the expert we’ve just listened to.’