Janet Meagher: Mental Health Activist

Janet Meagher (b. 1946), one of most Australia’s best-known and distinguished consumer advocates, became active in the early 1980s, shortly after she was discharged from Gladesville mental hospital in Sydney. Since then, she has worked tirelessly to improve the position of people with a lived experience of mental distress by working with fellow consumers, governments, mental health professionals, and the Australian public in general.

In 1969, following an experience of severe mental distress, Meagher was admitted to a private mental hospital. This was the first of what turned out to be several stays in various hospitals. She was eventually diagnosed with paranoid schizophrenia and admitted to Gladesville, where she was eventually placed on a chronic, long-stay ward. There was no expectation she would ever be discharged. Janet spent ten years in institutions, a time that she refers to as her ‘university course in what not to do, and how not to do it in mental health’. Janet, a self-described fighter, was moulded by her experiences of institutionalisation:

What it taught me, and the qualification I got, was to be totally anti-institution of any description, in any context for any vulnerable person. And I think most human beings are vulnerable.¹

Janet experienced considerable trauma personally and as a witness of many acts of physical, sexual, and emotional abuse of patients, describing the actions of some staff as ‘monstrous beyond belief’. Sadly, experiences such as these were not uncommon in Australia’s psychiatric institutions at the time. This trauma was one of the motivating forces for her ongoing advocacy in mental health. She recalled thinking:

If I ever get out of here, this stuff is going to drive me, be my outboard motor. It’ll keep me going when everything else falls over, because I am not going to let them get away with it.

To her own surprise, Janet was placed in a ‘Domestic Retraining’ project with other patients in preparation for her discharge from Gladesville Hospital in 1979. She recalled her unfamiliarity with the world ‘outside’ after a decade of institutionalisation:

… things that happened to you people out in the wide world, such as bank cards, pieces of plastic with which you could buy things, we didn’t know about that, and ABBA and things like that had happened.

It was during this period that Janet confronted her treating psychiatrist about the conditions in Gladesville, asking her:

I don’t understand how you as a Christian person can sit around and do your job, knowing that this is happening all around you.

Janet recalls that her psychiatrist, who claimed to be both ‘powerless’ and ‘stuck’, told her that ‘the only people who can bring about change are people like you.’ Understandably, Janet’s responded with incredulity.

Well, how would I do it? I’m a mad woman, I am marked for life. There’s no way I’m going to get away with speaking publicly and have people listen to me.

But her psychiatrist insisted:

You can do it. Learn as much about the systems that chain you in, as you possibly can, and then you set about finding the elements you can bring change to. There are many more things outside health that would be good weapons for you to try to learn more about.

This advice laid out a journey of learning and change that Janet has followed and initiated ever since. She remembers that she ‘was absolutely flabbergasted the first time I read the Universal Declaration of Human Rights’ (1947). Now she refers to human rights as the ‘underlying theme’ of all her advocacy work:

… that is what I base everything on; we’re human, we have rights. It doesn’t matter if you have a mental illness or not. You still have rights. And that’s the big revelation that everything else is and must be permeated with.

After leaving hospital, Janet and several other people who had been discharged from mental hospitals and were living in the community founded Ssh, the Schizophrenia Self Help Group. Simon Champ was another member, and he became a fellow activist. This group was for individuals diagnosed with schizophrenia who were trying to build a life ‘on the outside’. Their approach was radical: they met in highly visible public locations, such as the Archibald Fountain in Hyde Park in the early 1980s. Interested people could find the group because Janet always brought her green esky.

Janet recalls that at the time,

It was pretty unacceptable for mad people to be in public places - especially those of us who were seen as overtly mad.

The group was inspired by Janet’s correspondence with people (previously known as ex-patients) who were coming together to work for policy and social change, overseas in New Zealand, Europe, and the UK, and in North America. In those places those who represented the ‘mainstream’ had taken up use of the term ‘consumer’, seeing themselves as part of the burgeoning of the broader consumer rights movement:

So, we saw ourselves as purchasers of service. And if the service wasn’t right, we had rights, and could take action.

In the early 1980s, Janet looked to join other groups calling for progressive mental health policy. She found a place in the NSW Mental Health Association (NSW MHA), where she was ‘well mentored in the fields of governance and good practice’. The decade spent in mental hospitals had not equipped Meagher with the skills of a mental health advocate. All she had was a desire to bring about change and no skills to do it. She highlighted the important mentoring role that psychiatrist Donald Scott-Orr, social worker Margaret Lukes (founder of the Association of Relatives and Friends of the Mentally Ill, ARAFMI), and several others in mentoring her in areas including how to write formal documents and policies, how to make her opinion known and have impact, and how to act as a member of committees. Janet became the first person with lived experience of mental illness to serve on the board of the NSW MHA. She later became NSW state representative to the Australian National Association for Mental Health and was elected to serve as national representative to the World Federation for Mental Health. Janet recalls that, in the late 1980s,

People who were in mental health care were getting substandard and sub-optimum supports, and those working in those systems were finding it harder and harder to work effectively and responsibly in the systems that were being consistently defunded, or having monies diverted.

Janet was instrumental in bringing about change by personally delivering the report detailing financial mismanagement to the then Human Rights Commissioner, Brian Burdekin.² The subsequent Human Rights Inquiry resulted in the Burdekin Report (1993), which prompted significant revision of the mental health service systems across Australia.³ Janet recalls the moment that Burdekin informed her he would be launching the inquiry into the human rights of people with a mental illness:

I thought at that time, ‘my work is finished. I have succeeded. All the things I set out to do have been achieved’ – Was I wrong!

During the Human Rights Inquiry, Janet took on the job of supporting and coaching other consumers into sharing their traumatic experiences within the mental health system.

I used to run little training courses for people on how to give evidence without putting your whole soul into it and blubbering. You can blubber but your story must be heard, so don’t blubber to the point of not being in control.

Early on, Janet recognised the need for mutual care and support within the consumer movement. In 1994, Janet began international research which she completed as part of her Churchill Fellowship. The goal in all her activities—and, according to her, ideally the goal of all mental health intervention—was to assist individuals to develop the skills to lead a contributing life. This theme is central in her handbook: Partnership or Pretence (1995).⁴ Empowering consumers of mental health care by assisting them to develop the skills to become active participants of their own treatment—and, later, to function as consumer advocates within the mental health system—was the central goal of this book, and most of the activities she undertook. Unsurprisingly, Janet’s approach to mental health is person-centred:

I like to think of us as all as contributing human beings first … all the other things are just what sums up our experiences. What we’ve been able to do with those experiences, whether we’ve been able to make something of the ingredients of our lives that will help someone else be more successful, or whether we just have piles of ingredients that we’ve done nothing with. That’s the difference between being an activist and just having the experience.

Although she has faced conflict with other consumer activists, Janet always maintains that we ‘have to be able to encompass everybody in our advocacy’ and believes that this mentality allowed her to be ‘amongst the last standing’ of those originally involved in the consumer movement.⁵ True to her fashion, she sums up her view of what it means to be a mental health activist:

I have a very strong belief that everyone I know in the movement, whether I love them or dislike them, is a hero. Because you can’t go through that and come out the other end, without tremendous learning.

In 1996, Janet Meagher was awarded membership in the Order of Australia (AM) in recognition of her contributions to mental health, and in 2017 was awarded the Australian Mental Health Prize.

1. Quotations are drawn from two interviews with Janet Meagher on 8 July 2020 and 9 October 2020 by the ARC Research Group on the History of Community Mental Health in Australia.

2. The report was by Peter Eisen and Kevin Wolfenden, National Mental Health Services Policy: Report of the Consultancy to Advise Commonwealth, State and Territory Health Ministers (Canberra, ACT: Department of Community Services and Health; Australian Health Ministers' Advisory Council, 1988).

3. Human Rights and Equal Opportunity Commission, and Brian Burdekin, Human Rights and Mental Illness: Report of the National Inquiry into the Human Rights of People with Mental Illness [Burdekin Report], 2 vols. (Canberra, ACT: Australian Government Publishing Service, 1993).

4. Janet Meagher, Partnership or Pretence: A Handbook of Empowerment and Self Advocacy for Consumers/Users and Survivors of Psychiatric Services (a Personal Contribution to the Development of the Psychiatric Consumer Movement in Australia) (Sydney, NSW: Psychiatric Rehabilitation Association, 1995). New editions followed in 1996, 2002, and 2012. It has also been translated and published in Japan (twice) and in Mandarin and South American Spanish.

5. For an overview of the involvement of consumers in mental health care, see Janet Meagher, Anthony Stratford, Fay Jackson, Erandathie Jayakody, and Tim Fong, eds. Peer Work in Australia: A New Future for Mental Health (Sydney, NSW: Flourish Australia and Mind Australia, 2018).