Schizophrenia: You Can’t Talk About That!: Reflections on a Lifetime of Mental Health Advocacy

by Margaret Leggatt

The year was 1973. I was working as an occupational therapist at one of the fi rst Community Mental Health Centres in Melbourne, which was set up as the replacement for the infamous mental asylums—those reputedly horrendous places of lifelong incarceration that included an irreversible process of ‘institutionalisation’ of its inmates, a process during which you lost all freedoms, performed as directed, obeyed orders, and relinquished all contact with the outside world. Patients in these total institutions consequently became completely depersonalised and dehumanised.

Such was the reputation of these institutions, that when it was suggested that they be closed down for a number of wonderfully humanitarian reasons, there was little opposition. Interestingly, there have subsequently been suggestions that governments were motivated instead by the huge amounts of money they could make by selling off the valuable and extensive land occupied by these large institutions. The promise that the funds earned from these sales would go towards building community mental health facilities has not been sufficiently fulfilled. Is this why we have so many homeless mentally ill people nowadays? Is this why forty percent of people who are currently in jail have a mental illness? Sarcastically I ask: Have we merely replaced one form of incarceration for another one?

But I digress. You may already have gathered that I am angry, upset, and frustrated by the present state of mental health care in Victoria. Let me reflect on my time at the Community Mental Health Centre. After some months of working there after the big institutions had been closed, we came into contact with an increasing number of incredibly distressed families who were coming to us begging for help. That was something new. With institutional care, people were locked up. Families were able to get rid of someone who was a burden to them; they had been able to ‘lock them up and throw away the key’. Families no longer had to acknowledge that they had a ‘mad’ family member. Now, unexpectedly, they actually had one living with them. Now the neighbours found out that there was a ‘nutter’ next door. Police divvy vans were sometimes seen in the neighbourhood, having been called because of the peculiar behaviour of the ‘nutter’.

When I was working at the centre, I was also completing a Master of Arts majoring in Sociology at Monash University. After completing this degree, I decided to continue with academic research by developing and conducting a research project following several families with a son or daughter who had been diagnosed with schizophrenia and how they coped with this. For the next four years, this took over my life. It profoundly affected me. I watched and listened (and recorded) incidents in the lives of these distraught families. After completing this research project (for which I was awarded a PhD), I left the University to set up an organisation with the main purpose of helping and supporting such families. With the psychiatrist superintendent and the senior social worker at the clinic I decided to call a meeting of family members to hear what they had to say about how best we could help them. We advertised the time and place of the meeting at the clinic and in the local newspaper, which was held in a local church hall. We put out 30 chairs; at least 130 people turned up.

Schizophrenia Awareness Week 1988. Walking down Swanston Street in Melbourne to emphasise the need for community support services for mentally ill people once they leave hospital. Photo taken by author.

Names and addresses were taken; attendees started support groups in their localities. Eleven support groups commenced. Thus began the organisation that we decided to call the Schizophrenia Fellowship of Victoria—the SFV. We sought publicity through newspapers, radio, and television as well as through organisations such as the Rotary. We were determined to talk about schizophrenia.

Soon I received a phone call from an irate psychiatric nurse working in one of our mental health services. ‘Woman, what on earth do you think you are doing? Schizophrenia! You can’t talk about that!’ It is interesting to reflect on this now. In those days, anyone who suffered psychotic episodes / had psychotic experiences was labelled ‘schizophrenic’. It was the only diagnosis mentioned at the time, so we had no hesitation in using this word for the organisation that aimed to involve family carers and friends in the treatment and support processes that their relative would receive. Among our members were not only family carers, but many individuals who had been diagnosed with this condition joined as well. They were as keen as their carers to have their situation understood. They were not the monsters, the demon killers, or the crazies beyond redemption so cruelly and inaccurately portrayed by Hollywood and other media. Soon there were requests from other states for assistance to set up similar organisations. For me, it was a fantastic experience to be part of the growth in confidence, the shedding of the shame associated with having a mental illness, and the relief from getting rid of hidden secrets, that began to permeate these organisations. We felt we were well on the way to getting rid of the crippling stigma surrounding mental illness.

After four years, I was totally swamped. Not only were we finding out ways to support families, but we were also developing rehabilitation and housing projects as well as spending countless hours pushing the frontiers of ignorance through the media. I employed someone who had developed a non-government organisation dealing with overseas aid. He very quickly assessed that we were trying to do too much and suggested that we establish another organisation—to be Australia-wide—that would conduct all public advocacy promoting community awareness and acceptance, leaving us to concentrate on developing and providing support services through rehabilitation and housing initiatives.

As you might imagine, I was hardly overjoyed at the prospect of setting up another organisation, let alone be told that I must approach ‘influential’ people who had power and prestige; ‘big boys’ with clout. After some squirming hesitation, I started out and, surprisingly, found it much easier than I had anticipated. Why? It turned out that several of the high-powered men I approached had a son or daughter with schizophrenia. I had not known this because, of course, they had not told anyone; and here I was giving them an opportunity to ‘do something’. The new organisation was initially called the Schizophrenia Australia Foundation but later changed its name to SANE – Australia. S.A.N.E.,the organisation in the U.K, originally stood for ‘Schizophrenia: A National Emergency’. But as a larger number of mental illness diagnoses began to appear, schizophrenia (or the schizophrenias, plural, as they really are a group of illnesses with different causes, courses, and outcomes) became one among several mental illnesses that came under our purview; other diagnoses included bipolar disorder, eating disorders, and overwhelmingly a range of anxiety and depressive disorders. More recently, the personality disorders are starting to become more recognised as illnesses rather than just bad behaviour.

My last position was with Orygen Youth Health. My main purpose there was to ensure that family carers whose son or daughter was experiencing a first episode of psychosis were given the information, training, and support they required in order to provide optimal care to their off spring. We were working on the assumption that providing early intervention with optimal treatment and support would prevent relapses, thus eliminating the possibility of a decline into chronic psychiatric disability.

I retired from ORYGEN in 2008 but have retained a keen interest in a range of mental health issues and involvement in several mental health causes. I keep an eye on what is happening in mental health, particularly in the UK. Although I am no longer working at the coalface, I have maintained contact with several consumers with schizophrenia. I am alarmed at what they tell me about present-day mental health services. Their stories are in line with a report from the Schizophrenia Commission in the U.K. that was published in 2012 entitled The Abandoned Illness.1 This report was based on evidence provided by several thousand people—consumers, family carers, and mental health professionals—from around England. The commission wrote, ‘What we found was a broken and demoralised system that does not deliver the quality of treatment that is needed for people to recover’.2 Unfortunately, Australia is no different.

Schizophrenia Awareness Week 1988, march in Melbourne’s CBD. Photo taken by author.

In 2019, Sandy Jeff s and I put together a book called Out of the Madhouse: From Asylums to Caring Community?3 Sandy had her first psychotic episode in 1978 and has struggled with schizophrenia ever since. She remembers her admissions to Larundel in outer Melbourne—an institution that was closed in 1999 because it was considered one of the ‘awful’ mental hospitals—with a degree of gratitude. She relates how she had received sympathetic treatment while experiencing true ‘asylum’ from the ravages of her debilitating illness. The thirty-plus former ‘inmates’ diagnosed with schizophrenia who Sandy interviewed for this book spoke scathingly about their present-day treatment and care. Maybe the asylums of the past were not as bad as we once thought they were?

These days, patients have very short periods in an acute ward in a general hospital; wards which have become frightening places catering for people high on methamphetamines who can cause untold damage and mayhem. The nurses are unable to provide much basic care and spend a lot of time behind glass windows (in the ‘fishbowl’) doing paperwork; many of them are not trained psychiatric nurses, unlike the experienced psychiatric nurses who worked in the large institutions of the past. The pressure placed on staff for the increased throughput of patients means that medication is the only treatment provided—often, higher doses are prescribed for quicker results unfortunately accompanied by increased horrible side-effects. Psychological interventions and social rehabilitation hardly exist anymore. Individuals have short stays in hospital before they are discharged, but to what? In far too many instances to homelessness and a life of petty crimes (stealing food?) leading to jail.

Most of these people are diagnosed with schizophrenia—indeed a seemingly abandoned and forgotten illness. But this is rarely acknowledged. It is not talked about. The only time schizophrenia is mentioned is when a violent crime takes place. Commentators then often ask the question: does this person have schizophrenia? Why was this person released in the first place?

Over thirty years ago, we started to talk about schizophrenia despite being criticised for doing so. It has proved to be successful if the number of people who talked about it and the amount of positive publicity garnered is any indication. Today, in 2022, I can’t help feeling that we have gone seriously backwards. Nobody talks about schizophrenia anymore.

Margaret Leggatt AM, PhD, BAppScience (OT) has been involved in the mental health sector for over forty years as an occupational therapist and a sociologist. In 1978 she was the founding director of the Schizophrenia Fellowship of Victoria and co-founder of SANE.

This reflection first appeared in Health and History 24, no 2 (2022): 125-130.

Notes

1. Schizophrenia Commission, The Abandoned Illness: A Report by the Schizophrenia Commission (London: Rethink Mental Illness, 2012).

2. Ibid., 4.

3. Sandy Jeff s and Margaret Leggatt, Out of the Madhouse: From Asylums to Caring Community? (Melbourne: Arcadia, 2020).