Lived experience at the core
We have come a long way in how we approach lived experience in mental health, and it is easy to forget how recent much of this progress actually is. Today, very few academics, funders or Ministries of Health would design a programme without at least some form of lived experience involvement.
But long before this term entered our policy documents, mad activist movements and survivor groups were fighting for recognition and for a real share of power in the decisions made about their own lives. Their methods and their language have sometimes been called “controversial”, and some of their positions remained contested within our own sector. And yet much of the ground we stand on today was cleared by them, often at real personal cost.
So placing lived experience at the core of World Mental Health Day, the most important moment in our mental health calendar, is a milestone that should not go unnoticed.
At the Global Mental Health Action Network (GMHAN), we define lived experience deliberately broadly, including experiences of distress however mild or severe, of trauma, of inequality and of caring for a loved one, and we treat it as expertise rather than as a separate category. This shapes how we work both at GMHAN and as United for Global Mental Health: we invest in lived experience advocates, we work side-by-side, we remunerate lived expertise, and we never make disclosure the price of participation. The alternative is a sector that asks people to perform their pain in order to be heard.
“Nothing about us without us” applies to global decisions as much as to individual care, and it guides the work that we do in advocacy, together with our global community, at a local, national, regional and global level.
Our lived experiences, our loved experiences and our learned experiences have too often been kept in separate rooms, with different weight attached to each. This World Mental Health Day, let them come together to define a better mental health future for all.
Dr Antonis Kousoulis
Director of Partnerships & Secretariat Lead
Global Mental Health Action Network, United for Global Mental Health
https://gmhan.org
https://unitedgmh.org/