Nothing in our mental health system makes sense, except in light of lived experience
On 26 May 2022 I was fortunate to attend the Wellways Public Lecture: Grassroots to Governance, with a spectacular keynote address from Debbie Hamilton. Lived experience leadership in governance was discussed by an expert panel including Rod Little, Michael Gorton and Mary O’Hagan. The fourth member was Erandathie Jayakodie, Senior Project Lead of the Consumers Leading in Governance program, developed by the Victorian Mental Illness Awareness Council. It is a transformative program that supports emerging leaders to capitalise on their opportunities in governance roles, while also maintaining their connection to the consumer movement.
I reflected that this night reminded me of an old post I made on a now defunct website in 2018. It is my view that no mental health system, or any system for that matter, can make sense, unless it is seen and designed through the eyes of lived experience. Naturally, Charles Darwin was my ally in this discussion. Note: I’ve made minor changes to the blog, such as a reference to the Royal Commission.
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Ideas and movements need packaging. “Lived experience” is one such idea. It refers to the idea that subjects (people) of emotional distress hold the unique insights into its nature and how to heal it. A 40-year-old article on evolutionary biology, of all things, suggested a pathway forward.
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Theodor Dobzhansky was born in humble beginnings in Nemyriv, 1900, during the time of the Russian Empire. Fast-forward 73 years: Dobzhansky is in the United States, and one of the world’s most important molecular biologists, with his earlier book, Genetics and the Origin of Species, a testament to this. [1]
However more than 100 years after Darwin’s Origin, Dobzhansky and science still confronted threats from creationists. His article “Nothing in Biology Makes Sense, Except in Light of Evolution”, left no doubt about his views. The article was clear. But much of its power came in its ability to organize ideas.
For Dobzhansky, evolution was a “light”. It creates new discoveries, and projects meaning and order onto existing, disparate facts. The notion of Evolution as a guiding light is a beautiful, one I think. Dobzhansky goes on to quote the Jesuit Priest and vitalist, Pierre Teilhard de Chardin:
[Evolution is the] general condition to which all theories, all hypotheses, all systems must bow and which they must satisfy henceforward if they are to be thinkable and true. Evolution is a light which illuminates all facts, a curve that all lines must follow. (p. 219 of the Phenomenon of Man.
In this sense, evolution was recognized as the centrepiece of life-science. It constrained and enabled at the same time. It was a reference point. From that powerful idea, all future ideas would need to show their coherence and fidelity.
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Strangely enough, I think that this has relevance to mental health. Experience, something we all take for granted, can be an illuminating and organizing idea. In mental health, lived experience honours primacy of the subject, and acknowledges that solutions only lay within the eyes of those who are affected by them. It says that care and services are for better experiences.
To some of you not familiar with the public mental health system, this may seem obvious. Of course you would listen to the person – isn’t that obvious? Of course they are best positioned to tell you the causes of their distress – that seems essential? Of course they should drive the solution – how else could you do it?
Unfortunately the mental health system does not always do this. The Royal Commission into Victoria’s Mental Health System found that it often ignores people’s lived expertise, preferring to stamp diagnostic labels in a language that lived experience doesn’t often speak. The trauma undergirding to people’s distress is repressed by a system struggling to cope, unwilling to adapt, and afraid of its shadow. Solutions are driven by risk–assessments; it is less about the person’s experience, and more about their risk.
And yet we do so knowing that it doesn’t work. Our concept of discrete biological illnesses are flawed, and we ignore better alternatives. Our risk assessments systematically fail, but in many instances we fail to change those systems. When these methods fail, we have more restrictive options – seclusion, restraint, forced injections and electroconvulsive therapy. Care has become synonymous with illness, illness with risk, and risk with control.
We need a break.
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Our core ideas and values underpinning the system need to change. That is not to say risk cannot play a role – we cannot return to a past or society that predates our preoccupation to risk. That would be to bury our heads in the sand. But we do need to think creatively about our future. And I think a focus on each person’s lived experience may provide that organizing framework.
What does this mean? It means nothing in mental health:
…Our concepts of distress
…Our practices or systems
…Our laws and rights
…Our conversations and our commitments
…will make sense, or be justifiable, if they aren’t grounded, and pay honour, to “lived experience.”
What would this mean in the short-term for practice in a compulsory system?
Assessment and admission processes – stop forcing people to use the system and ask why it is so bad that they avoid it, and provide better alternatives
Diagnosis? – labels, often violently applied, are used as a replacement for experience, meaning and purpose. Depth of conversation, power-naming and power-sharing. An acknowledgement of stories rather than illnesses.
Interventions? – responses to distress are experienced and described less as “interventions”. In their place are plans, support, dialogue (often difficult) and journeys. These conversations move away from illness and towards meaning.
Discharge? – perhaps a more supported step-out from a service. One where the person feels that their stay has been less of a psychological rupture, and their steps back home feel more supported.
Individual – services and practitioners that understand individuality. It organizes and responds to the experience of every individual. Not mistaking or essentializing one lived experience, but many.
Our responsibility – a society that acknowledges individual experiences of all, but honours those who face oppression. Understanding and promoting the experience of a person, and shining a light on our social failures that have led to an individual’s distress.
Unlike risk, experience is something known, tangible, and readily accessible (just ask, listen, and honour!). It sheds light on the quality of services. It reveals, whereas risk more often confuses, triggers (consumers, staff, society) and conceals. It exposes the politics inherent in helping, whereas risk hides it behind numbers. Both may have a place in organizing our services and communities, but to date one has dominated, while the other has been paid only lip service.
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[1] I drew the inspiration for this article from Houston We Have a Narrative (Randy Olson).
