#MHForAll Webinar: Breaking Barriers - Reclaiming ‘mad activism’, shifting power and centring lived experience
Before lived experience experts were recognised as key to mental health research and policy, and before there was greater general awareness of what “Public and Patient Involvement”, service users and lived experience experts can contribute, mad activist movements and survivor groups were fighting for recognition and shared power in decision-making. These groups have been pivotal in shaping the landscape for lived experience, but sometimes their methods and language are contested as "controversial".
At this webinar, our expert speakers discussed the crucial role these movements have played in shaping “expertise by experience” as we know it. We examined the role of lived experience in shaping the future of mental health policy, practice, science and advocacy, as well as what we need to understand to make this future a reality.
Expert panellists:
Grace Gatera, My Mind our Humanity, Wellcome Trust, Rwanda
Parth Sharma, T&F India, India
Chan Li Shan, University of Hawaiʻi at Mānoa, Singapore
Matt Jackman, The Australian Centre for Lived Experience, Australia
Sasha Hajj Assaf, Justice for Lebanon, Lebanon
Reflecting on routes into the lived experience advocacy space and the language
Grace opened the webinar acknowledging that we are standing on the shoulders of giants, and lived experience activists who have brought big shifts to the global mental health space before us. Entering this space, you meet fellow survivors and people with mental health challenges working to transform mental health from within. This is now an entire ecosystem that we collectively describe as “lived experience”.
However, our individual perspectives can be limited. The panellists reflected that there are many different routes into lived experience advocacy. Cultural, historical and political narratives shape the space.
“Mad activism” has been reclaimed largely through the “mad pride” movement, though the era of inhumane and coercive treatment institutions is not over. Conceptions of “madness” differ around the world, and historically, they have closely followed colonial and dominant Western narratives. Much of modern terminology is framed around Western psychiatric systems, which do not align with everyone around the world. Even though a lot of progress has been made, tokenism is still a concern.
Reflecting on decolonisation
“Assimilation” poses a risk as broader societal trends focusing on narrow individual issues of resilience and stress management create specific behavioural expectations and views of people with lived experience. To reclaim our identities, we need to actively question the current biomedical care models and be driven by the huge diversity of healing models that exist, without the need to commodify them.
Parth highlighted that decolonisation is inherently linked to the current systems of the status quo, including the violent spaces that pathologise people. They questioned whether a colonial system can truly be decolonised.
“Are we decolonising a colonial system by introducing diversity through social justice, or are we actually dismantling colonial systems of oppression that inhabit all our structural systems, and all our lives?”
Li Shan shared the example of post-colonial Singapore, reflecting on how spiritual and healing rituals that were widespread in the 1960s have almost disappeared since the broadening of the modern psychiatric model in the country. If the psyche is depoliticised, persons diagnosed with mental illness are not encouraged to galvanise their capabilities to contest, question or struggle against the disempowerment that often happens in mental health institutions.
Sasha prompted to hold on to the motto “nothing about us, without us”, and outlined that there are three levels of decolonisation to consider: (i) knowledge and practices imposed out of context, (ii) reconsider the few classifications that cannot summarise the entire human experience of distress, (ii) take into account systems of global political dominance.
Matt stressed that our existence is deeply political, hence, the structural determinants of mental health (including structural violence) are a hugely important context, especially in terms of understanding the hierarchies of knowledge and power. We should be reclaiming our right to define our experiences and identities in our own language.
Reflecting on Community
The panellists acknowledged that there is no single understanding of community, either in global mental health or decolonising practice. A personal inquiry is an important starting point, and statements of positionality are a critical framing, e.g. asking where we belong and exploring the spaces we occupy. Privilege is important to recognise and acknowledge.
Decolonisation is also about shifting mindsets. One goal of mental health advocacy can be to bring social and political analysis into the medical discussions around global mental health. The majority of mental health professionals are well-intentioned, especially in the involvement of persons with psychiatric history in the mental healthcare sector. But we must be mindful of how good intentions can also be followed by detrimental policies and treatment practices. At the same time, we also often have to advocate and work within the systems that we are trying to change, whilst navigating the communities where we can belong and work collaboratively.
“It starts with deep-diving into ourselves, our positionality, our identity, the power we have, the spaces we are in and the spaces we have come from.”
Reflecting on the evolution and future of lived experience
Sasha reminded us that there are still people detained in psychiatric institutions. Perceptions and practices vary a lot depending on context. We often think of colonialism in terms of systems, but we can also hold it in our attitudes and beliefs. Mental health leaders should be working on strategies that fit their own cultural context.
Matt highlighted that oppressive systems still exist, and we should also be reviewing our language and the terms we use. Cross-community solidarity will be important, as mental health conditions intersect with almost every other right to justice cause.
Parth used the quote by Arundati Roy: “Another world is not only possible, she is on her way. On a quiet day, I can hear her breathing” prompting us to allow our work to become messy and engage with the communities that encourage us to understand what lived experience means to people working in the grassroots and creating new systems for themselves.
“Another world is not only possible, she is on her way. On a quiet day, I can hear her breathing.”
Li Shan reminded us that our “lived experience” predecessors have also felt powerless, and yet they showed their agency. In thinking about the future of mental health, we also need to remember the past and reflect on the progress that’s been made.
A take-home message from our panellists
“For a decolonised global mental health future, our GMHAN members must…”
Sasha: …facilitate knowledge exchange, challenge imposed methods, focus on knowledge production, change fundraising strategies, generate more equality between lived experience movements and raise awareness of the dark history of psychiatry.
Parth: …use their platforms to raise awareness about genocides happening in the world, and dismantle power systems.
Li Shan: …resist official narratives and speak their truths as acts of citizenship to connect with others, belong to a community, and find their place in the world. It is not mental health that we should care about, but other human beings.
Matt: …name human rights violations and oppressions and the intersections with other issues, be able to speak openly about madness, and work as a society to accept and celebrate it.
