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Nothing about us without us

Our recent Thought Leadership Event explored the question: ‘Nothing about us without us: how are lived experience voices best incorporated at all levels?’

We were joined by clients of services, people with a lived experience of mental illness/distress or alcohol and other drug use, people with a current ‘living’ experience of those things, people from the Department of Health, lawyers, researchers, social enterprise entrepreneurs, alcohol and other drug sector workers and mental health sector workers.

Mary O’Hagan, Executive Director Lived Experience Branch (Department of Health, Mental Health and Wellbeing Division) told of her own turbulent years in her 20s, about how much she learnt about herself and also the mental health system during a time when she was ‘supposed’ to be learning at University. Mary has a truly uncanny way of flipping things on their head. If you’ve read her fabulous book “Madness Made Me”, you’ll know that she places a value on mental illness, a shocking concept when it is forever thought of only as a deficit.

Next, Clare Davies explained how Self Help Addiction Recovery Centre (SHARC) is root, branch and twig a lived experience organisation. Light years ahead of most other organisations in this regard, the SHARC CEO role can only be held by someone with a lived experience of illicit drug use. Clare explained that, formally separated from the Mental Health sector, the Alcohol and Other Drug sector has been able to flourish. Not financially mind you, but in terms of a progressive, empathetic approach to voices of lived experience: 'Clinical and non-clinical must come together from a place of equity - social connections, shared values and interactions, peer-to-peer learning, communities of practice . . .” It was inspiring stuff!

John Quiroga, AOD Health Services Planner for North & West Metro AOD Service, went into detail on a number of projects where lived experience was given equal weight to worker knowledge. Radical thought! And he advised that the ongoing success of this work requires long-term core funding, infrastructure and accepted protocols. Mary’s working on it!

Then came Q&A. While some ‘questions’ were taken as impassioned ‘comments’, the variety of perspectives and experience from the audience was truly fascinating. Each contribution could have spawned its own Thought Leadership Event!

On reflection, engaging the voices of lived and living experience involves power-sharing, partnership, respect and leadership. Leadership by lived experience for lived experience, and for everyone else too.

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