Experts by Experience
There has been a gradual shift to decentre biomedical expertise and prevent the harms of psychiatry in Eurocentric discourse. In GMH, this is reflected in the 2018 Lancet Commission, which included one user-survivor voice, and the formation of the Global Mental Health Peer Network (GMHPN) the same year.
Grassroots movements led by survivors challenge the mental health system, exposing violence both within and beyond it. They aim to reshape the system from the ground up, not just prevent harm. Resistance to individualised biomedical discourse has long existed, as seen in the Scottish Union of Mental Patients, the Insane Liberation Front in the 1970s, Asylum Magazine (1986), and the Aaina newsletter (2001). Similarly, Mad Pride, Mad Studies, and crip activism connect psychological distress to socio-political oppression and violence.
However, as the movement(s) are not homogenous, it is crucial to recognise who speaks from lived experience in GMH. Whether it is in clinical research, academia, services or as consultants for funders, the focus is on People with Lived Experience (PWLE) who may identify as ‘patients,’ ‘service users,’ or ‘experts by experience’. For instance, the Lancet Commission typically includes those who accept the medical model and advocate for reform within the system. Partnering with mental health professionals gives PWLE credibility and visibility, but risks co-opting their knowledge and political ideals of user-survivor movements, situating them within profit and efficiency paradigms. This perpetuates an individualised, decontextualised, cure-based, neo-liberal lens maintaining the power gap between medical experts and those with lived experience.
Currently, lived experience in GMH is defined by diagnosis and engagement with formal mental health institutions. Is this truly representative of the majority world? What about those in countries with no services or significant treatment gaps? Can someone be considered a valid PWLE without access to a diagnosis? This notion of lived expertise is intrinsically tied to biomedical systems rooted in Global North socio-economic realities.
By narrowly focusing on carceral institutionalisation and asylum frameworks, GMH centres on discrimination within these systems, neglecting the broader social determinants of mental health. This limited scope overlooks areas where biomedical intervention isn’t central to the discrimination faced by those with psychosocial illness or distress.
By not including those surviving systemic discrimination embedded into health systems this perspective limits the term ‘lived experience’ to be used in the contexts of queerness, race, caste and other historical marginalisations. Especially, in the LMIC context, this means that PWLE often speak from privileged positions of caste, class, language and geography which affects their access to diagnosis, discourse and formal mental health services.
This issue is also evident in the Global North, where only certain voices shaped by race, religion, ethnicity, and gender and sexuality, are valued. For instance, it took George Floyd’s murder for the American Psychiatric Association (APA) to finally recognise and apologise for its role in supporting structural racism affecting Black, Indigenous and People of Colour communities. Additionally, activist movements like neurodiversity face the same challenges as institutionalised approaches to lived experience, struggling with similar issues of representation and validation.