Introduction by Croakey: The forthcoming national mental health lived experience consumer peak body should be a leader on human rights and embed intersectionality, according to mental health and human rights advocate Simon Katterl.
Additionally, the peak body must centre and represent the voices of people with lived experience of mental health issues and the mental health system – something which consumer peaks in each state and territory have been doing for decades, Katterl writes below.
It is important to look back in order to move forward in designing the national consumer peak body, to acknowledge the harms that have been caused by past mental health structures, systems and infrastructure, and to recognise the role of consumers in advocating for change.
Read this article by Katterl for insights into how we got to where we are now, and the history of mental healthcare in Australia. He offers a proposal for the design of the national consumer peak body.
Simon Katterl writes:
After a decade of delay, Australia is readying itself for mental health reform. The Abbott-Turnbull-Morrison governments shelved Labor’s plans in the early 2010s for separate national consumer and carer peak bodies. Now Ministers Mark Butler and Emma McBride have put it back on the agenda.
A recent discussion paper has highlighted the Government’s initial thinking on the process for the design of the new national mental health lived experience consumer peak body, indicating their intention to centre consumer and carer voices in mental health reform.
However, while an important initiative, the discussion paper doesn’t speak to how we got to where we are now, which means I’m not sure we will get to where we’re going, or where we need to go. Let me explain.
Looking back to move forward
Aboriginal and Torres Strait Islander people supported each other’s social and emotional wellbeing on and with this land for 65,000 years. At the point of First Contact, there were 260 many languages and more than 500 dialects among the original custodians. First Contact brought the devastating consequences that ‘Australia’ continues to struggle to come to terms with.
One of the importations from colonial England was the ‘modern’ approaches to ‘managing’ ‘madness’. The early origins of Australia’s mental health system are based on a custodial framework of control. To the extent that distress was responded to by early colonies, it was done through the criminal justice system.
Eventually the colonies began formally separating the ‘criminal’ from the ‘mad’ through purpose-built mental health facilities such as Tarban Creek Asylum (later called Gladesville Hospital) in New South Wales.
Victoria has long considered itself one of the ‘civilised’ and progressive states, which dates back to how the colony established colonial psychiatry. The creation of the Yarra Bend Asylum marks an important moment in this respect. The asylum, which was built atop an important meeting ground for different members of the Kulin Nations, represented what Victorians thought of as the best of their reformist tendencies.
Similar institutions – such as the Kew Asylum and the Ararat Asylum – operated during a period of mass confinement, leading some international commentators to call this colony one of the “maddest places on earth”.
While there were stated ambitions to create places of care, these environments were ridden with controversies and claims of abuse.
That past is connected to the present. Despite the formal separation of the criminal justice system from the civil mental health system, the custodial currents continue to flow through both systems. The use of compulsory mental health treatment across all states and territories continue to police the socially constructed boundaries of ‘normality’ and ‘abnormality’.
What is glaringly apparent when you look at the history of mental health systems in Australia and abroad is the absence of voice, choice and control for people with lived experience. People in distress are either criminal or mad, and various evolutions of mental health system and cultural attitudes suggest that such people should be ‘controlled’, ‘managed’, or ‘treated’.
Human rights were never part of the foundations of Australia’s mental health system(s).
The ideas underpinning these systems are largely not of the making of people with lived experience. Diagnostic systems originated and are sustained by consensus-building processes that have excluded people with lived experience.
A symptom of that underlying failure is seen in how diagnoses that most visibly discipline normality – including ‘homosexuality’ or ‘gender identity disorder’ – are overturned, not by evidence, but by political pressure.
That observation does not imply that these groups I note were wrong to call this out, but rather that who gets to determine what is normal or abnormal is as much result of sociopolitical progress as scientific progress.
Many folks in the mental health system remain excluded from that process.
Reform begins
In the mid-to-late 20th century this began to change. No doubt based on undocumented earlier work, people with lived experience of institutions began organising peer groups to support one another and demand change.
The GROW peer group was established in 1957, while organisations such as the Victorian Mental Illness Awareness Council began in the 1980s. VMIAC is now one of several consumer peak bodies operating across states and territories in Australia.
On the back of work from these organisations, consumer lived experience began to be incorporated into existing mental health systems. Consumer consultant roles began in the 1990s, and take a more service-wide and systems-focused approach to consumer lived experience work than individual (but equally radical) peer support work.
Eventually, there were calls for a National Consumer Peak body. It got close. Real close, towards the end of the Rudd-Gillard-Rudd government. A consumer peak body was close to being stood up, but the introduction of the Abbott-Turnbull-Morrison governments (maybe Morrison PM for all of them and we didn’t know!) resulted in 10 years of mental health reform delay. The national consumer peak was on the reform chopping block.
However, it’s now back on the menu.
I have views on what that could mean for the design of the consumer peak and what it should encompass.
Embody voice, movements and solidarity
It is crucial that the national consumer peak is grounded in the notion of voice for people with lived experience of distress, trauma and mental health issues, including those who have been harmed by the mental health system. Doing that requires an understanding of how systems work, don’t work, and can be changed.
The consumer peaks in each state and territory have been representing consumer voices for decades. They have deep connections – often challenging and contested like any space – into the communities that they work with. They are history holders that must balance honouring past, its continuity with the present, while also being reflexive about the voices that have not been heard.
They also know how to hold government accountable for its decisions. They know the leverage points for change. They have the capacity to mobilise communities around the issues that affect them. They are imperfect (like me!), they are incomplete (meaning others will need to join), but they are an indispensable part of the national consumer peak.
If you want mental health reform in this country, you need the state consumer peak bodies to be part of the national consumer peak.
Leader on human rights
So many components of Australia’s public mental health system are incompatible with human rights.
The widespread use of institutionalisation and coercion should be at the front of our mind. That this was not foregrounded in the discussion paper means that long fight for human rights risks being lost.
Human rights are not just about coercion, they are about Indigenous rights to self-determination, equal standards of mental health and crisis support for people of different backgrounds and communities.
Someone receiving a lower standard of care, because they are trans rather than cis-gender, is a profound human rights issue. Being deadnamed, vilified and misgendered while being detained may constitute inhumane and degrading treatment.
The consumer peak will need to have a deep understanding of these cross-cutting issues, and needs to be able to put them in a human rights context. The law is, after all, one of the main mechanisms to hold governments accountable for their decisions.
Embed intersectionality
Power in the mental health landscape is intersectional. My place in the system is in part a product of my unearned privileges around my gender, class, and education. Although I have experienced vilification based on my mental health, I haven’t experienced that associated with involuntary mental health treatment – another profound form of privilege when I locate myself in a mental health discussion.
The mental health system, including the upcoming consumer peak, will have an ongoing challenge with this.
That is why the consumer peak must also have representation of people or representative groups for people with lived experience who have experienced intersecting forms of disadvantage or oppression.
The highest priority, though not limited, should be to ensure proper representation of First Nations people with lived experiences of distress and trauma. However, we need to locate that the main intersection here is with mental health, and it is how intersectionality relates to mental health: its causes and consequences.
The current discussion paper seems to lack any gravitational centre point around mental health, risking that it could be the peak for a whole range of communities, some of whom are already represented by disability peaks and other lived experience peaks.
Reading this discussion paper tells me that there hasn’t been enough consideration of the long-term relations between peaks for different communities and the lineage of histories and relations they have with one another.
That means proactive steps need to be taken to ensure that the consumer peak is representative. Which comes to the final point and proposal.
A mixed model
The consumer peak will need to be based on a “model”. What form that model takes will have significant implications for how it operates and how effective it will be. There are, I believe, three models to consider.
The consumer peak would be based on individuals with consumer lived experience: an individualist model.
This model would likely select people based on their geographic location and with some broad commitment to intersectionality across the whole group. The main argument in support of this would be to favour intersectionality by ensuring that all groups are reflected.
The significant downsides would be that people are not formally representing a community of thousands of people, that it wouldn’t necessarily draw on a lineage of history in the consumer movement, and that the individuals would lack the institutional power to persuade and pressure government on change.
The consumer peak could instead reflect a ‘coming together’ of the existing state and territory peaks (noting that Northern Territory would need formal representation): the federated model. The benefits of this model would correspond to the weaknesses of the individualist model, being that it has more reach, representation, and power. The downsides are that just having these peaks would mean minoritised groups may not get their views fully heard.
The consumer peak could be a combination of these two models, meaning it included the consumer peaks but also had equal membership from lived experience groups or consortiums that represent distinct intersecting experiences: the mixed model.
The mixed model, in my view, maximises the benefit of both the individualist and the federated models, while also dealing with their limitations. It has clarity of purpose – being the intersectional representation of people with distress and who have been disadvantaged by the system – without being exclusive nor stepping on the toes of work of other representative bodies.
That model would not represent the “job done”, but instead be a starting point for the development of a new forum for change. Settler colonial histories will be central to this process, minoritised experiences, as well the legacy and continuation of harm in the mental health system.
If done well – and at this stage it is a big IF – this would be a core part of future mental health reform. If done badly, we will later realise we haven’t been making progress, but instead have been walking in circles.
About the author
Simon Katterl is a consumer workforce member who has worked in community development, advocacy, regulation, and law reform. Simon’s work is grounded in his lived experience of mental health issues, as well as his studies in law, politics, psychology and regulation.
While this article was drafted in early November and he writes it in his personal capacity, he notes that he was appointed to the Committee of Management of the Victorian Mental Illness Awareness Council on 15 November 2023.
Crisis supports
13YARN is a crisis support line for Aboriginal and Torres Strait Islander people. Available 24/7. No shame, no judgement, safe place to yarn.
Phone 13 92 76
Kids Helpline provides free, private and confidential 24/7 phone and online counselling service for young people between the ages of 5 and 25.
Phone: 1800 551 800
Lifeline provides free suicide and mental health crisis support for all Australians.
Phone: 13 11 14
Beyond Blue provides free telephone and online counselling services 24/7 for everyone in Australia.
Phone: 1300 224 636
1800 RESPECT provides confidential sexual assault and family and domestic violence counselling via phone and webchat. Available 24 hours a day, seven days a week.
Phone: 1800 737 732
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