A woman stands before a conference of mental health professionals, speaking about her experience of psychosis. She describes what it was like from the inside, the terror and confusion, how she experienced the treatment she received, what helped and what harmed. The professionals listen differently than they do to each other, confronted with the subjective reality their clinical language can obscure. A man who has been through the psychiatric system multiple times joins a hospital committee, his perspective challenging assumptions that those providing care rarely question. A young person with lived experience of eating disorders becomes a peer support worker, her understanding of recovery offering something clinical training cannot provide. A policy maker with his own mental health history advocates for changes he knows are needed from the inside. A researcher with lived experience asks questions that colleagues without that experience do not think to ask. The inclusion of lived experience voices in mental health policy, services, and advocacy has grown, challenging traditional hierarchies where professionals speak about those with mental illness rather than with them. Whether lived experience inclusion represents meaningful change or tokenism, and how to authentically center those most affected, shapes the future of mental health systems.
The Case for Centering Lived Experience
Advocates argue that those with lived experience of mental illness should be central to all aspects of mental health systems. From this view, nothing about us without us.
Lived experience provides irreplaceable knowledge. Professionals understand mental illness from outside; those with lived experience know it from inside. This experiential knowledge is essential for effective services and policies. Lived experience is not inferior to professional expertise but different and necessary.
Those most affected should have voice in decisions affecting them. Mental health systems make decisions about people with mental illness. Democratic principles and justice require that affected populations have meaningful voice. Inclusion is matter of rights, not just effectiveness.
Lived experience inclusion improves services. Services designed with lived experience input better address actual needs. Peer support provides unique benefit. Policies informed by those affected are more likely to work. Inclusion produces better outcomes.
From this perspective, centering lived experience requires: peer support workers in all mental health settings; lived experience representation on all decision-making bodies; meaningful involvement in service design and evaluation; lived experience leadership in advocacy; and fair compensation for lived experience contributions.
The Case for Balanced Approach
Others argue that while lived experience is valuable, it should complement rather than displace professional expertise. From this view, multiple perspectives are needed.
Individual lived experience is not generalizable. One person's experience does not represent everyone's. Policies should be based on evidence from many, not the account of one. Lived experience has value but should not override aggregate evidence.
Professional expertise exists for reasons. Training provides knowledge that personal experience cannot. Clinical and research expertise remain essential. Lived experience inclusion should not dismiss the value of professional knowledge.
Power dynamics in lived experience inclusion can be complicated. Those chosen to represent lived experience may not represent the most marginalized. Tokenistic inclusion may serve organizations without genuine power sharing. The politics of who speaks matters.
From this perspective, lived experience should be one voice among many, valued but not privileged over other forms of knowledge.
The Peer Support Model
Peer support workers use their own lived experience to support others.
From one view, peer support should be integral to all mental health services. The unique understanding peers provide, the hope they model through their own recovery, and the relationship they offer complement clinical services. Peer support roles should be expanded and professionalized.
From another view, peer support has limits. Not all roles are appropriate for peer workers. Training and boundaries are essential. Peer support should complement but not replace clinical services. The professionalization of peer support raises questions about what is lost when lived experience becomes credential.
How peer support is structured shapes its role in mental health systems.
The Policy and Governance Inclusion
People with lived experience increasingly serve on boards, committees, and policy bodies.
From one perspective, lived experience inclusion in governance is essential. Those affected by mental health policy should help shape it. Advisory committees, board positions, and policy development should include lived experience voices with real power.
From another perspective, meaningful inclusion requires more than adding a seat at the table. Power dynamics, accessibility, and compensation all affect whether inclusion is genuine. Token inclusion may provide cover without change. Quality of inclusion matters more than presence.
How governance inclusion is structured shapes its authenticity.
The Research Involvement
Lived experience involvement in research ranges from participant to co-researcher to leadership.
From one view, research about mental illness should involve those with lived experience throughout the process. Questions asked, methods used, interpretation of findings, and dissemination of results all benefit from lived experience input. Participatory research respects those studied as partners.
From another view, research requires methodological expertise. Lived experience does not qualify someone to design studies or interpret data. Involvement should be appropriate to capacity. Research rigor should not be sacrificed for inclusion.
How lived experience is included in research shapes what questions are asked and how answers are understood.
The Advocacy Leadership
Mental health advocacy increasingly centers lived experience leadership.
From one perspective, those with lived experience should lead mental health advocacy. Family advocacy organizations that speak about rather than with people with mental illness may misrepresent interests. Consumer or survivor-led advocacy ensures those most affected set the agenda.
From another perspective, different stakeholders have different perspectives that all have value. Family members, professionals, and others affected by mental health systems have legitimate voices. Advocacy need not privilege one perspective over others.
Who leads advocacy shapes what is advocated for.
The Compensation Question
Lived experience contributions often go uncompensated.
From one view, people asked to share their lived experience should be fairly compensated. Their expertise has value. Expecting free contributions exploits vulnerable people. Compensation demonstrates that lived experience is valued, not just used.
From another view, compensation can complicate lived experience involvement. Paid positions may go to those with privilege to navigate application processes. Not all involvement needs payment. The relationship between compensation and authenticity is complex.
How lived experience is compensated shapes who participates and how.
The Tokenism Risk
Lived experience inclusion can be genuine or tokenistic.
From one perspective, organizations must actively work against tokenism. Single representatives, constrained roles, and symbolic inclusion without power all represent tokenism. Meaningful inclusion requires numbers, power, and genuine integration of lived experience perspectives.
From another perspective, some inclusion is better than none. Starting points matter. Organizations new to inclusion may begin with limited involvement that grows over time. Demanding perfect inclusion may prevent progress.
How tokenism is identified and addressed shapes inclusion authenticity.
The Diversity Within Lived Experience
Lived experience is not monolithic; diverse experiences exist.
From one view, lived experience inclusion must include diverse voices. Race, class, gender, diagnosis, treatment experience, and other factors affect how mental illness is experienced. Inclusion that centers white, educated, English-speaking people with certain diagnoses does not represent all lived experience.
From another view, representing all diversity is challenging. Organizations cannot include every perspective. Some representation is practical necessity. Acknowledging limitations while striving for diversity is realistic approach.
How diversity within lived experience is addressed shapes whose voices are heard.
The Canadian Context
Canada has growing lived experience movement in mental health. Peer support workers are employed in some settings. Lived experience advisory bodies exist in some organizations. However, inclusion remains uneven, compensation is inconsistent, and meaningful power sharing is limited. Some provinces are more advanced than others in lived experience inclusion.
From one perspective, Canada should mandate and fund lived experience inclusion across mental health systems.
From another perspective, organic growth of lived experience involvement may be more authentic than mandated inclusion.
How Canada approaches lived experience inclusion shapes whether affected communities genuinely shape mental health systems.
The Question
If those with lived experience know mental illness from inside in ways professionals cannot, if inclusion improves services and respects rights, if affected communities should shape systems that serve them - why is lived experience still marginalized in most mental health spaces? When someone with lived experience speaks and is heard differently than a professional saying the same thing, what does that difference reveal? When inclusion exists but power does not shift, whose interests does inclusion serve? When we ask people to share their painful experiences for our learning without fair compensation, what exchange is that? And when we claim to center lived experience while our structures remain unchanged, what are we actually centering?