Nothing about us without us: Reflections from the launch of the Expert by Experience Action Group

On December 10th, International Human Rights Day, we launched our first meeting of the Expert by Experience Action Group (EEAG) on the Deinstitutionalisation of Mental Health Care. As a group that brings together people from around the world who have lived experience with institutionalisation, either directly or indirectly as a family member or caregiver, this group is the first of its kind where experts by experience will be centrally placed to coordinate targeted actions to advocate for the transition from the overreliance on institutional models towards rights-based, primary and community-based mental health care. We will provide evidence, policy guidance, and advocacy support to national partners and international organizations, with the aim of influencing legislation, financing priorities, and service delivery models.

People with lived experience have often and historically been relegated to the sidelines when it comes to decisions that directly impact them. For too long, the system and the actors that operate within them have made decisions for us, overriding our preferences and undermining our right to have a say in matters that affect us. And yet, despite this systemic and institutional resistance towards including people with lived experience and lack of acknowledgement of lived experience as a valid and essential form of knowledge - holding its own weight in epistemological currency - people with lived experience have a long history and deep roots in challenging the status quo, disrupting the system, and making their voices heard. 

This action group, then, aims to build from past movements of change. From my vantage point, it feels as though we’re finally reaching an inflection point where we’re starting to see the shift towards realizing that as a collective field, we cannot begin to meaningfully transform the system without the deliberate inclusion of people who have personal and intimate experiences of navigating through them - not just as peripheral supporting characters, but as leaders, decision-makers, advocates, and experts in their own right - with a seat at the table and a voice that is heard. 

The first meeting of the EEAG on December 10th was powerful. Members called in from their respective countries, including the UK, Pakistan, Sierra Leone, Denmark, Peru, and Indonesia, to name a few. They spoke about their desire to transform a system that currently perpetuates fear into a system that generates hope. They shared their stories, vignettes of their lived experiences that have brought them into this advocacy work in their local communities, through the Global Mental Health Action Network, and beyond. We also went around the room and shared one word that best encapsulates how we want to show up as a collective and as individuals, part of this EEAG moving forward. These words formed the basis of our shared values and what we want the spirit of our advocacy to embody, and are as follows:

community persistence empathy visibility

existence courage voice

resistance justice respect collaboration

defiance hope

There is an old adage that says, “we may have all come from different ships, but we’re in the same boat now.” It’s a phrase that comes to mind for me when I think about each of us in the EEAG. We have traversed our own separate journeys, often confronting impossible odds, and from the myriad of our lived experiences, upbringings, and cultures, have somehow found ourselves with a shared determination and commitment towards ending harmful, coercive practices and making mental health care more humane, compassionate, and centered around the principles of human rights, dignity, and respect. 

We’re all in the same boat. So let’s keep rowing.

Written by Veronica Cho, Co-Chair of the EEAG