Shared visions, personal responsibilities: how we co-create a more humane system
In August 2021, I was a co-keynote for the Collaborative Mental Health Nursing Conference. Here is the text of my keynote below. Slides are linked below too.
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Good afternoon. It is my pleasure to be here. My name is Simon Katterl and I’m a mental health consultant and advocate, with a special interest in human rights.
I’ve been lucky enough in my time to work across the mental health and human rights sector with organisations such as the Victorian Mental Illness Awareness Council, Independent Mental Health Advocacy, Victoria Legal Aid, the Mental Health Complaints Commissioner, the Victorian Equal Opportunity and Human Rights Commission as well as the Royal Commission into Victoria’s Mental Health System.
Today I'm going to paint a picture for you. It's my vision for a better mental health system, and it's my hope, by the end of this speech, it will be your vision, too.
But first, a story about me and why I am here.
You know what its like as a 22 year-old. You’re young, an expert in everything, and convinced you can change the world. That was me.
I thought we would arrive in Dili in East Timor and start handing out resources to school children – instantly making a difference. That was the plan anyway, when I moved to East Timor in 2012 to establish and run operations for a small education NGO.
Of course, the reality was starkly different. I went there to help, but I’m not sure…I may have caused harm.
Leaving the bustling Melbourne Airport, I arrived at Dili airport. Barren, with barely a soul in sight.
The day I arrived, Dilli was teetering on the edge of civil war. I had kept the news from my family for fear of worrying them.
While Timor’s emergency quickly died down, a more dull, thudding sense of dread began to emerge from within.
You see Timor didn’t fit into the boxes I had put it in. In fact, I learnt that my boxes were part of the problem.
In deciding to help, by providing education resources to children in remote communities, I assumed that I knew the problem, that I wasn’t part of the problem, that I was the key to the solution.
But I didn’t know these things. And the more I waded into people’s lives, the more I realised this.
Speaking to the people affected by the issue, I learnt how wrong I was. I remember being in the Department of Education with officials questioning why I had come into their country, meddled in their education system, and failed to properly consult them. The issue wasn’t necessarily under-resourcing, the issue wasn’t necessarily a lack of education resources, the issue wasn’t a lack of saviors, like me. Throughout my time there, I bore much valid, but quite difficult, criticism.
In many ways, Timor broke me. I had worked everyday around the clock for my whole stint, I had been told repeatedly that I wasn’t helping, I felt alone. On top of that, I’d had scary experiences, like when I was caught on top of a mountain, Mount Ramelau, overnight, spending the night counting down from 1000 to 0 over and over again for 12 hours as the temperature dropped 30 degrees. I believe my ticks started that night.
I returned to Australia, but didn’t recognise myself. The isolation had made me vulnerable, the work had worn me down, and my moral failings had left me broken. I returned a gaunt 25killos lighter than you see me here today, unable to leave the house for fear, unable to speak because of confusion and suicidal because of the pain.
I didn’t know what was happening, but I was lucky to have family. It took months to get mental health supports, drugs were the only thing I could get immediately. Though medications were helpful, the only things that kept me alive were connection and hope. Like the time at a train-station late at night where an image of a friend’s child was the only thing that kept me off the tracks. Times when people told me they loved me. And often just time.
It were my failures overseas, the emergence of my own mental health problems, and learning what helped me, that would eventually lead me into this work.
Why do I tell you this? Perhaps, I’m too much of a tight ass to pay for more therapy. But that aside, I say it because I know what it is like to work in a system or in a setting that, despite your best intentions, is harmful, rather than helpful.
The Royal Commission into Victoria’s Mental Health System – established after periods of historic underfunding – told us many uncomfortable truths about mental health in Victoria.
It told us that the system forced rather than reinforced us,
It told us that the system used law rather than followed law,
It told us that the system spoke about illness, rather than listened for distress
It told us that the system made decisions about people, without those people.
And that really is only the start of what a Royal Commission could, or should, have told us: it never had any consumers in any leadership positions. It was a Royal Commission about us, without us.
These points came through in the final report, but they also came through my work directly with consumers before and during the Royal Commission. In 2020 I supported 34 people to give evidence to the Royal Commission. I didn’t determine or influence their story. Instead, I asked three questions:
1) Tell us about yourself
2) What would you like the Royal Commission to know
3) What would you like the Royal Commission to do
Here are some of the things they said to me and to the Royal Commission:
One woman said to me:
‘I was too scared to raise it with them. Talking to the other patients, I was told that “if you say no, you will just stay longer”. So, I took the medication that left me sedated and drooling.’
Another woman told me:
‘When I got to the hospital, I was not assessed for three days. I was eventually put in front of a psychiatrist. I felt like I was railroaded and bullied by him. He had five other people there – I was never asked if I wanted them there. I was not allowed an advocate, a support person, or to record the conversation. When I demanded a support person, I was given a nurse, but the nurses never advocated for me, they just sit there silently.’
A man said:
‘[G]etting the right psychiatrist shouldn’t be a lottery. You should get the right access to care no matter who you see. But in my experience, one psychiatrist respected me and gave me care, while the other did the opposite and took away my rights.’
And another stated:
‘[T]he system impresses itself upon you and imprisons you. You can’t think from the medication. People stop calling your phone. Relationships are gone. Your life changes. Your person is dead. But you are meant to go on pretending that everything is normal. And you never have any choice about the matter. It’s an invisible and symbolic prison.’
How did we end up with a system that is consistently hurting rather than helping people?
Part 2: Introduce key message - The system is wrong, not broken, and we need to stop normalising it
In order to address this, we need to ask what exactly are systems? Donella Meadows, the renowned systems thinker defines it as:
“an interconnected set of elements that is coherently organized in a way that achieves something”
This is a fairly neutral, if nihilistic definition of a system. It means that systems do not need to do good things, they just need to do something. All systems achieve something, whether that something is helpful or harmful, and, whether we are aware of it or not.
Since colonisation, Australia has provided many examples of such systems. In what we now call the Stolen Generation, thousands of children were taken from their parents as part of a policy that assumed First Nations people would die out.
Victoria was an unfortunate leader in this process, passing the Victorian Aboriginal Protection Act in 1867. The Bringing Them Home report found that at least 100 000 children and babies were taken from their parents. The practices, legacies and impacts of these systems continue to impact First Nations people today.
These are designed policies, built on paternalism. They are wrong. This is wrong. It is not a broken system, it is a wrong system.
And what of our mental health system?
They too, have a painful history.
It is often one that is often left unaddressed. Psychiatrist Dr Roger Mulder reminded us that “psychiatry cannot ignore the past since it profoundly affects all aspects of our present clinical practice”.
Mulder is saying we have to know where we have come from, to know where we are going. We need to draw that line from our past, to our present.
When we look at that past, of the mental health system and laws we are confronted by cycles. Professor Neil Rees, the former President of the Mental Review Board in Victoria described our mental health system as a cycle of ‘crisis, followed by inquiry, followed by legislation’ (Rees, 2009, p. 71).
A thread that continues from our past, and wraps around our present, is the intertwining of care and control. In the 19th century Victoria was commonly known as the “maddest place on earth” for its unusually high rates of civil commitment (Giese, 2018), with people were detained and involuntarily treated under the Lunacy Act 1867 (Vic). The historian Lee-Ann Monk described how Australia’s approaches to “management” of the diagnosed “insane” as deeply custodial in nature (Monk, 2008, pp. 125–127).
Indeed, Roy Porter, a renowned historian of psychiatry stated:
‘the asylum was neither just a site for care and cure, nor just a convenient place for locking up inconvenient people (“custodialism”). It was many things all at once’[1]
When the late 19th and 20th centuries rolled around, eugenics began to influence mental health care and, leading to an increased role for asylums to police and monitor mental health consumers.
There was crisis after crisis in these institutions. These were not isolated experiences. Asylums such as Aradale, for example, have been described by historians as ‘a place of degradation, torture, and death’ (Waldron & Waldron, 2020, p. 50).
New deinstitutionalisation laws were introduced. They were part of a scaling back of asylum-care, and scaling-up of forced care in people’s homes and community. Now, Victoria has some of the highest rates of community treatment orders in the country, and world.
It wasn’t just law that followed an ideology of controlled-care, architecture did too. Nurses stations were centralised to give surveillance of mental health consumers at any time.
Procedures focused on monitoring, measuring and mitigating risk, with care relegated to fall between the gaps.
Its not like these laws or these procedures prevented crisis. We know about the widespread use of insulin coma therapies throughout Australia, leading to several deaths and the Chelmsford Royal Commission. In 1993, the Burdekin report revealed widespread human rights breaches throughout Australia. And then, amidst new mental health and human rights laws, there was inquiry after inquiry, case after case, Commission after Commission, until the most recent.
At no stage in these processes were consumers placed in charge. No change in procedures, no oversight, no mental health laws and no Royal Commission will make an enduring change unless consumers are put in charge.
And yet even as we all call for these things and a greater seat at the table, in 2021, we have prominent mental health leaders stigmatising and discriminating important consumer voices with implications and slurs.
This system isn’t broken, its wrong. We have to stop normalising it.
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As mental health nurses, I know this matters to you. You may be women putting up with us men, people of colour dealing with us white folk, unionists dealing trying to negotiate fair pay. You know what its like to get the short end of the stick, and the challenges of calling for change.
But it must be a hard and vexed position to be in, as part of the system.
Recently I spoke with a senior mental health nurse. Crying with distress at her place in the system, she said ‘you know, we have this joke at work “I don’t think I’ve ever helped a patient”’.
It threw me. Not just statement, but the deep level of pain that she carried with it.
She appeared to feel felt implicated in a system that consistently told or incentivised her to do things that she didn’t want to do.
I say this because mental health nursing is obviously value quality care, informed decision-making and a culture of safety. And yet, these systems don’t necessarily do that, do they?
That takes a personal toll. There is a tension between personal and professional ethics, the logics of a sick and controlling system, and the daily choices mental health clinicians make.
I want to say that our liberation is shared, in that the tension clinicians experience, and the truly vast and deep injuries faced by consumers, as well as their families, supporters and carers, can be minimised and healed by challenging, rather than normalising a wrong, not broken, mental health system.
The Royal Commission laid bare this reality, but asked government and all of us to make something different. It made a series of recommendations for systems-wide reforms. New laws. New Commissions. More funding. More workforce support. More consumer leadership. Less compulsory treatment. No restrictive practices.
These are important developments. However, recommendations written are not recommendations implemented.
If they were the architects, we collectively, are the builders.
This isn’t the first inquiry. The first call for change. For this to be different, we need to take personal responsibility for the things we can change.
We can’t change systems overnight but we can change little parts everyday.
The Centre for Mental Health Nursing has a training program called “Every moment counts”. It considers practical ways that you can create meaningful connections.
I think that is a sentiment that I want to bring here: that if we are going to move from a system of control and harm, to a system of care and help, moments count.
Moments build into habits, which build into cultures, which build into processes, which build into systems. In order to change systems, we must acknowledge and address our participation in those systems. We have to accept we are, in part, the system.
If we do that, we can change logics and change systems. If we don’t, the problem is “out there”, unchangeable.
We do that through acknowledging the role of trauma, including the role that the system has had in creating that trauma, and supporting people to find their own healing.
We do that through challenging the system’s failings rather than normalising them.
We do that through protecting and promoting autonomy, and strenuously resisting efforts to violate it.
We do it by promoting trust and confidentiality, and abandon processes that undermine them.
We do it by reflecting and learning about equality and equity, and challenging double standards that resists it.
We do that through acknowledging and addressing power. Acknowledging the privileged position we hold, and finding ways to equalise that power.
There are moments that correspond to each of these opportunities. I’ve seen them.
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How are you and your colleagues supporting and upholding human rights?
Are consumers being included at the meetings that affect them?
What ways are you learning and growing from consumers in your daily practice?
Are there moments where you could have done better? If so, how?
Only you can individually know which moments apply to you.
I will close with a quote from someone who spoke to me and gave evidence to the Royal Commission.
‘Mental people are sane, but they need help. They need help like I need help. But I want it done with a better understanding. At the moment I am treated like a trash-heap.
C’mon, I am wanting help, but I am not getting it. I want proper help. But what I need, not what they need to give me.
They don’t listen. They are scared of mental people.
The mental person needs something from a sane person. They just need love. It is an environment of love.
Treat me like a human being first – no matter how hard it is. If you can do that, connect your head and your heart, the truth will come out of you. You will be proud of yourself and you will have a right to be.’
She then asked a question of the Royal Commission, which is a question I will now ask you.
‘Will each mental health nurse at the Royal Commission in this room ask themselves why they are doing this work?
Will each mental health nurse at the Royal Commission in this room make changes from the heart?’
So I ask you to reset the goals and reconfigure the conversations. It was never a broken system. It was a system that broke people.
Pick your spots and find your moments. Don’t support this system; challenge and change it.
Thank you
Slides: https://1drv.ms/p/s!AjpIj8mGzv4UnApjK5gv73LrvpmB?e=zfh69Q
[1] R. Porter, ‘Introduction’, in Porter and D. Wright (eds), The Confinement of the Insane: International Perspectives, 1800–1965 (Cambridge; New York: Cambridge University Press, 2003), 5.
