Keynote

Speaking across Australia since 2001. Selected as one of eleven Australians for the inaugural National Future Leaders in Mental Health Project with the National Mental Health Commission. NSW Northern Tablelands Woman of the Year, 2014.

Content note: refers to a missing family member, death, psychosis, suicidal distress and personal mental health experience.

In January 2001, my brother Ben McFarlane went missing in Mt Baw Baw, Victoria, during his final psychotic episode. His remains have never been found. I was part of the search.

For years I talked about what that taught me about the mental health system. Why Ben was discharged at his worst. Why the teams around him were not trained in what he actually had. That talk was worth giving, and I gave it for a long time.

There is a second half now, and it changes the ending.

So I walked. Ten months after he disappeared, six hundred kilometres of the Bibbulmun Track in Western Australia, the walk Ben and I had planned to do together. I carried the guidebook he gave me. Then the Camino, eighteen hundred and fifty kilometres over the Pyrenees. Then Shikoku, fourteen hundred kilometres around the eighty-eight temples. Then I walked Armidale, New South Wales, to Melbourne, seventeen hundred kilometres, through Mt Baw Baw.

I did not set out to process anything. Standing still was unbearable and walking was the only thing that helped. But you cannot walk that far without the same questions turning over, and mine would not let go. How does a system exile someone and call it a discharge. Who else is it happening to right now.

I understand now that the relentlessness was my brain. Monotropic attention does not release a question until it has an answer. At the time I thought I was stuck. It turned out I was working.

Then I started a PhD to find out where stigma comes from. I read everything current, and all of it framed mental illness through deficit, risk and loss. I went home distressed most days.

So I flipped the question. Not for comfort, but because I could not keep working inside a frame that only described damage. I asked whether mental ill-health could enrich a life. I found eleven articles. Eleven.

My honours work had been on whether mindfulness could reduce stigma toward outgroups, and I knew the chronic pain research, where turning attention toward different sensory experience reduces the pain that is actually felt. Attention shapes the experience.

Which raised a question I could not put down. If a whole society only looks at mental illness through deficit, risk and loss, does that attention itself manufacture the stigma? And if we widened the view without ever minimising the suffering, would we see it more accurately, and would the prejudice have less to hold on to?

That took me into the history. The religious model, the medical model, each one confident and each one eventually replaced. We needed a new one.

I did not finish the PhD. I was undisclosed autistic in an environment with almost no structure, unpredictable demands and significant power imbalance, and I went into burnout. When I reached out, the response was minimisation, from someone whose own work was about care. That is the pattern: institutions speak the language of care and turn away from the people most in need of it. I stepped away to protect my life.

The model I could not finish writing was the thing that explained what had happened to me.

Because I was AuDHD, autistic and ADHD, and I had been living at the edge of belonging my whole life without a name for it. The diagnosis arrived like a cloak of compassion. Everything I had read as personal failure turned out to be a nervous system reporting accurately on conditions that did not fit it. That is not a small reframe. It is the difference between a life spent apologising and a life spent designing.

I have kept diaries for twenty-five years. When the model was built I went back through them and read my own life against it, looking for where it did not fit. That work is still going. Contemporaneous records, written by someone with no framework at the time and no reason to make anything come out neatly, are a hard test. The model has held, and where it has not, it has changed.

Ben was exiled by systems that could not hold him. I was exiled more quietly, for longer, by systems nobody thought to question. Same mechanism, different volume. And a mechanism is a thing you can change.

That is what the Belonging Model is for. Two premises: the problem lives in the fit, not the person. Body first, story second, meaning what a nervous system is reporting comes before the story anyone tells about it. From there everything is design, and design is something a room full of people can go and do on Monday.

The question underneath all of it has not changed since 2001. How do we create a world where no one is punished or disappeared for being different?