Reflections on the 30th Anniversary of the Establishment New South Wales Consumer Advisory Group – Mental Health

by Janet Meagher

A short biographical sketch of Janet Meagher

Thanks for this event, the welcome given to us.

I’m thrilled that we have this opportunity to celebrate and acknowledge the courageous and passionate, driven pioneers who came together in late 1992 to create a feedback mechanism to facilitate consumer influence, and establish and solidify this process in an ethical and effective organisation, the NSW Consumer Advisory Group. We had to work out how we were going to implement the honour of being the first ones—we had the great expectations of our peers (and ourselves) on our shoulders and an overriding sense of responsibility to succeed in the obligations bestowed on us. In fact, some of us felt that it was more like terror that we had bestowed on us, to be successful in creating the New South Wales Consumer Carer Advisory Group.

Who We Were

We were chosen because we were people who had been active somewhere in the mental health sector, and had worked independently on many, many issues to get the consumer voice heard. So this was, for many of us, both a terrifying challenge and a dream come true—it was a dream for us to have this first ever opportunity to work to influence policy and service practices.

I sit here today listening, and I feel a failure. The discussions earlier today spoke endlessly about getting it right in services, how to do ‘care’ properly, have policies affect lives, and respond to needs. Whereas, from my perspective, the focus should be on the things we do, and the where we do it; the thing we need most, is to live our lives where we are, as well as we can, with the supports we need. We move the focus to where we are. Remember that we don’t spend much time (out of a whole lifetime) in ‘care’—and let me tell you: that word is very broad in meaning—and we certainly are not involved in services or in service provision for the majority of our lives. We each have a life, and we have a right to live that life full of hope and potential not focussed on our illness or impairment, a life without ‘services’ or hospitalisation as the only options for intervention or support. For many of us our potential was never realised. And here we are at an event to honour us and our organisation and our values, only to hear that the majority of discussion is about services done ‘to us’ not ‘with us’, or being in ‘care’, and about policy. I’m all for those things in the right time and place. This isn’t the time or place to celebrate those things. It is the time to celebrate the role of the voice of lived experience, to laud this and to recognise and honour the courage it took to use our voice and ensure our participation back then.

So I’m in a quandary. This is a fabulous event. It’s been put together well. And yet it can’t sit right for me when, to an observer, it’s not—it appears to be about something else, not about the gifts and qualities that the early NSW CAG pioneers epitomised. I take a moment here to quote someone that you wouldn’t expect me to quote: Marilyn Monroe: ‘All we demanded was our right to twinkle’. I’m saying this on behalf of my peers and colleagues and those with lived experience in this room and those who care about us, because all we demand is ‘our right to twinkle’ and those who are twinkling here today:

Let your voice be heard.

Let’s not revert back to what we were: just pawns in a game.

My peers and colleagues here today need to know that their courage, their ethics, their tenaciousness, and their persistence have created a heritage and established a voice that is worth hearing.

Most of them are still advocating, stirring, and being there for one another, including myself.

Where did we get that tenaciousness and courage from? We came from a generation who had been harmed by the care and treatment systems, and of deinstitutionalisation processes prior to CAG’s formation. At that time communities were concerned in, and had an interest in, human rights. That’s why we came together. We came from various experiences of loss, violation, and abuse of our rights. That’s why some of us are still active in raising awareness of human rights. Violations of these rights still happen.

We were there either as a patient in institutional care, or in a hospital, or as an unsupported and isolated family member. We held hope for change and that’s why we did what we did.

We had a hope for change. For the realisation of our human rights. That’s what every movement starts with: people who’ve been part of a disenfranchised group, speaking up and speaking out to have a voice to change the way society sees them. You can name any movement in the last two thousand years and you will find that, underneath it all, are people clamouring to have their rights and their hopes realised. I think, to a degree, we’ve got a bit achieved, but there are many human rights that are still not being fully realised. We should be brave enough to still speak out, to still hold our peers experiences up for comparison against society’s values. I call us ‘consumers’ because that’s the word we chose way back when we first became organised. Otherwise, we were known as ‘ex-patients’—I know which one I prefer! We had to find ways of finding and sustaining hope. We ex-patients, as we were, struggled to be accepted as equals in groups and organisations. Very few would allow us to have an active role—they would pat us on the head and send us away, this was patronising and it doesn’t quite cut it as ‘participation’, we wanted our rights acknowledged.

We worked to overcome the awful isolation and overt discrimination that we experienced in life, and in our organisations. We were not welcomed—sometimes, even amongst ourselves. Over time, we developed an identity as ‘consumers’. For us, being ‘consumers’ meant that we had the same rights as every other citizen—that was the importance of that name. It’s been watered down and changed over time. By the time the Human Rights Inquiry into Mental Illness came about, we were only informally organised, and we worked under the auspice of a few organisations who supported our individual efforts.1

Regarding the historical trajectory of family member organisations during that same period. They were in a very different position to the consumers by the time of the Human Rights Inquiry. The relatives and friends of the mentally ill came together and formed ARAFMI (Association of the Relatives and Friends of the Mentally Ill, now Mental Health Carers NSW) in February 1975. They worked hard to overcome the awful isolation and overt discrimination that they and their families experienced. Over time they developed structures and formalised their work, programs, and processes. By the time of the Human Rights Inquiry, they were organised and ready to participate and contribute constructively. Alongside other supportive organisations (e.g. ANAMH [Australian National Association for Mental Health] and Mental Health Association of NSW [now Way Ahead]) they encouraged and prepared us to be ready to participate and contribute to the inquiry with brute honesty. This is where we came to together. It was the Human Rights Inquiry into Mental Illness that meant we supported one another to tell our horrific tales. We spoke about the horrors of the mental health service system, and the abuses that went on within it in the name of treatment and care. The inquiry treated us as valued contributors and validated our experiences. Interestingly though, if you look at the history: the Human Rights Inquiry was finalised in the first months of 1993, but it was already in the final draft twelve months prior to that. The Commonwealth government delayed its release so that they could get things in place, so that they didn’t appear to be inadequate or incompetent.

We really had a lot to gain by tying our hopes to the Human Rights Inquiry, because it forced the Commonwealth to act. Although, even until today, the Commonwealth would say that the National Mental Health Strategy had nothing to do within the Human Rights Inquiry. Well, I know what I believe. It was the initial trigger for the creation of the National Mental Health Strategy!

At the launch of the report, Commissioner Brian Burdekin said these words and I think there’s still a glimpse of truth in them: ‘The deprivation, discrimination, marginalisation, and stigmatisation still suffered by the hundreds of thousands of Australians affected by mental illness is a disgrace’.2

Where’s the hope? Well, this is the hope. This is how far we’ve come. But the integrity of this timeline is only as good as the integrity of those who are managing policy and service provision. There are many aspects of life today that are not all that far from where we started in the ‘good old days’ when some of us first became active.

It is a wonderful ‘pat-yourself-on-the-back’ timeline of great, great achievements and cumulative effective hope and purpose within the mental health and disability communities, but it is not a fully realised dream. If we could say, at the end of those years, that people were never going to experience trauma, abuse or neglect as part of their mental health service experience. If we could say that Australia was conforming to all the United Nations documents that we are signatory to, then, I will go home and rest on my laurels (as some of you will do too), because that’s all I ever wanted. I’ve never really reached that point and I’m sick to death of this struggle. I’m nearly seventy-six, give us a chance to rest on our laurels! Because, for some reason, we might achieve heaps of stuff, but we don’t seem to be able to improve the life circumstances of the vulnerable, my peers, and that’s not good enough.

CAG members, at the time we were formed, knew that ‘we are the change we seek’.

Our first logo indicates our commitment to co-design, cooperation, and focusing on the things we hold in common across this state. I’m the only CAG member on this schedule today. Probably that isn’t a good look. So, what happened to our co-design, cooperation, and focusing on the things we hold in common? I’m just saying. We have had a battle to have the lived experience voice recognised, and it was a decade of partnerships, courage, consultation, education by consumers in those early days before we achieved the goal of developing this organisation, NSW CAG.

Maybe, today, the founding date may seem of little relevance, yet, at the time it was an amazing and momentous landmark recognising our work.

There’s a risk in the current time to minimise or trivialise these efforts and the incredible achievement that these marvellous, courageous first generations of pioneer consumer and carer activists had. We setup our purpose, establishment ethos and values of the New South Wales Consumer Advisory group. We worked hard to create and maintain a values-based organisation.

We wanted to be the person that we wished we had in reaching this point for our struggles to be heard, to be the person you wish you had. To me, that’s a motivation for your future because if we’re not, we’ve failed.

My experiences of hopefulness, in the first decade of NSW CAG, were personally rewarding and added value to our organisation and led to greater appreciation of the range of human experiences.

The work goes on,

the cause endures,

the hope still lives

and the dreams never die.

- Edward Kennedy

This has happened. Hope still lives and the dreams never die.

I hope that is the message you take from this conference day. For me, the only time the dream will die is when I die, or else when we achieve everything we ever hoped for in our reforms and in our acknowledgment of the UN commitments to human rights.

Thank you.

Janet Meagher AM has been a vocal mental health activist since the early 1980s, upon her discharge from Gladesville hospital, where she spent more than 10 years. She has been part of several state and national associations to advocate for improvements in mental heatlh services. She published Partnership or Pretense (Sydney: 1995), which has been re-issued and translated. More recently, she co-edited Peer Work in Australia: A New Future for Mental Health (Sydney: 2018).

This reflection first appeared in Health and History 24, no. 2 (2022): 117-124. Special issue: (Re)Writing Care: Critical Histories of Community Mental Health Services in Australia and New Zealand, edited by Gemma Smart and Asha Zappa.

This text is based on a speech given at an event to commemorate the 30th anniversary of the establishment of the NSW Consumer Advisory Group – Mental Health, organised by BEING (formerly named the NSW CAG) and Mental Health Carers NSW (formerly named the Association of Relatives and Friends of the Mentally Ill (ARAFMI)) on 8 November 2022.

References

1. Human Rights and Equal Opportunity Commission, Report of the National Inquiry into the Human Rights of People with Mental Illness [Burdekin Report] (Canberra, ACT: Human Rights and Equal Opportunity Commission, 1993).

2. Brian Burdekin, Speech given at the launch of the Human Rights and Mental Illness report, 1993.