Hello, lovely people. I’m in NSW for work today,  I spent a pretty gruelling 8 hours travelling yesterday, then had the privilege of picking back up something I used to love to do, back in the before-covid years – lived experience research. I am so passionate about this type of work. There’s skill and care needed to create the conditions where people are willing to share, able to do with some level of richness and detail, and to then gather it well enough to not distort it when it’s being synthesised into group feedback or reports or wherever it’s going. People feel safe to talk in different places and in different ways. I belong to a lot of marginalised groups and that gives me a small advantage in trying to understand those needs and meet those conditions.

I was once explaining my role to a group – that my job here was to listen to understand – that if I could explain their opinions or experiences back to them accurately, I was doing it right, and then to make sure it was heard back at whatever head office had hired me. “Oh, you’re a nerd translator!” they responded. I was thrilled. What a fabulous description of a role that can otherwise sound incredibly simple and dry.

Lived experience research can open doors closed to people outside the community. It can shape the language of the questions. It can work from some level of shared experience and understanding. I find elegant lessons and dovetails with other passions of mine – narrative therapy approaches remind us that the way we frame the questions constrains or liberates the possible answers. Open dialogue tells us that consensus can collapse nuance, that there’s value in permitting polyphony.

You might think the lengthy travel would mean I slept well, but instead I was over-preparing for the work, and developing wild hives to something in my motel room. I’ve started using the sunflower lanyard in airports, on the few occasions I fly, to signal I have an invisible disability. It has made life a lot easier. I find flying physically pretty hard and the sensory stress is also high. I had a whole toolkit ready after my trip to Prague last year for the World Hearing Voices Congress; everything is a lot easier compared to that incredibly long flight. I promised myself during it that absolutely no more often than once a year was this an option. I was thrilled when the 2026 congress was going to be hosted in Australia, and now that it’s been moved to Copenhagen, which I’m confident is delightful, I’ve been sulking and quietly hiding away from it for a little while, because I just can’t manage that trip again yet. I wish I could sleep on planes, but it’s rare. Trains are a different matter! Delightful to sleep in. Cars I can pass out in. Planes are tiny itchy boxes of suppressed needs to stretch, flex, lie down, and fully breathe in. But also, how beautiful, flying over the silvery water and NSW with all the rivers and dams and at this time of year, the vivid green rolling hills. Finding quirky little spots to eat in. I’m pretty lucky.

It was hard to go. Nightingale is not well, 3 of the four kids are having a hard time. It’s hard to predict the timing on these things and this one turned out pretty rough. I’m not coming home refreshed and ready for the challenge, I’m coming home pumped full of antihistamines, sleep deprived, and looking forward to my own bed, my own food, and snuggling my family. I’m glad we’ve done so much work on what my own access needs are, what helps make it possible for me to show up and use these skills. It’s strange wearing the lanyard and noticing how people treat me differently, feeling myself moulding into that role in weird and uncomfortable ways. But also, when my bags got flagged going through security on the flight home and everything had to be unpacked because my lovely heavy metal fidgets were showing up on the xray as concerning, and the person looking at them didn’t know what they were, the lanyard gave me the benefit of the doubt while someone else came over and explained what fidgets are. The entire plan had boarded by the time I was free to dash off to it which was wildly unsettling but all was well. I was able to hold the spaces I wanted to hold, Nightingale held the sky up at home, and I’m heading back now having rekindled a small welcome fire.

I love my client work and deeply value my NDIS business but I’ve also been horribly restricted and I’ve terribly missed the opportunity to stretch all these other capacities. It’s very sweet to be starting to reconnect again.