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.
Theodor Dobzhansky was born in Nemyriv 1900, during the time of the Russian Empire. Fastforward 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. 
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 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. From that powerful idea, all future ideas would need to show their coherence and fidelity.
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 their right solutions with, not in spite, of other’s support. 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 do this. It systematically ignores people’s capacity, assuming appropriate, the diagnosis of their problems without them there, in a language they don’t speak. The trauma instrumental to their distress is repressed by a system struggling to cope and unwilling to adapt. Solutions are driven by risk–assessments; it is less about the person’s experience, and more about their risk.
And 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 the systems commits itself to the insanity of the same methods. When these methods fail, we have more restrictive options – seclusion, restraint, forced injections and electroconvulsive therapy. Care has become synonymous with illness, risk and control.
We need a break.
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 – less use of force by police, more compassion than control, less time alone in seclusion, more awareness of what is happening and when you will get out.
- Diagnosis? – labels, often violently applied are given up in the search for experience, meaning and purpose. Depth of conversation, power-naming and 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.
 I drew the inspiration for this article from Houston We Have a Narrative (Randy Olson).