Transformative Change Interest Group



Volume 50 Number 3 
Summer 2017

Transformative Change in Community Mental Health Interest Group

Edited by José H. Ornelas

Current Moments in Service User/Survivor Scholarship

Written by Jijian Voronka, PhD,, University of Windsor


Mental health literatures have paid substantive attention to the impetus for including peers in research, as well as outlining best practices on how to do so (Phillips, 2006; Rose, 2003). In theory, the benefits of collaborative research include improving the quality of the research, building capacity across researchers, and offering representation of marginalized communities under study (CAMH Community Advisory Committee for Research, 2016). In practice, this means that peer researchers are often hired into pre-existing research projects to contribute to pre-determined research frameworks and outputs. In this way, peer researchers are invited in to partake in research agendas that have not been developed by them. The complexity of collaborative endeavors as articulated by services users/survivors have been well documented, yet this scholarship remains largely unengaged by traditional mental health researchers (Wallcraft, Schrank & Amering, 2009).

Less impetus has been placed on mental health professionals to inform their research based on service user knowledge and collective politics. With this paper I briefly introduce recent developments in knowledge production that emerge from user/survivor scholars, activists, and advocates, and offer a resource guide that invites mental health researchers to more fully engage with these always developing fields of inquiry so that their research activities better reflect the concerns of user/survivor social movement politics.

Mad Studies & Survivor Research

All research leads with ontological and epistemological assumptions about knowledge, usually informed by the truths, values and belief systems of a scholar’s respective field (de Gialdino, 2009). In recent decades, informed by social movement activism and advocacy, user-led organizations and networks, and community building initiatives, service users/survivors working both within and without academic settings have been merging divergent knowledges to contribute to a distinct field of inquiry. Mad Studies has been defined “as a project of inquiry, knowledge production, and political action devoted to the critique and transcendence of psy-centred ways of thinking, behaving, relating, and being” (Menzies, LeFrançois & Reaume, 2013, p. 13). Just as Disability Studies allows for a radical revaluation of disability in meaning, doing, and being, Mad Studies is a field which engages the politics of mental health across inter/disciplinary fields by taking “social, relational, identity-based, and anti-oppression approaches to questions of mental/psychological/behavioural difference” (Gorman, 2013, p. 269). Mad Studies now offers a rich new entry point for service users, students, and scholars who are invested in engaging “radically new knowledges based on survivors’ own experiences” (Sweeney, 2016, p. 38). 

Complementing Mad Studies, survivor research (see Faulkner, 2004) is research that is explicitly “rooted in the political movement of people who have been subjected to psychiatric treatment” (Russo, 2012, p. 2). Sometimes misconstrued as tantamount to peer or user research, which is research conducted by people who identify as having lived experience of the psychiatric system, research that is survivor-led takes a more political stance, identified as work that is aligned with critique that “puts the entire psychiatric system in question” (Russo, 2012, p. 3). Edited volumes, such as Sweeny, Beresford, Faulkner, Nettle and Rose’s (2009) This is Survivor Research outline the impetus for, politics, and practices of survivor research. Informed by “feminist, black and community development research committed to supporting the rights and liberation of people facing oppression and discrimination” (Rose & Beresford, 2009, pp. 3-4), survivor research draws on the agendas of the social movement to “contribute to the aims of the survivor movement” (Rose & Beresford, 2009, p.2).

Why Engage Service User Knowledges?

Including service users in collaborative research is important. But it is equally important to consider what conceptual paradigms you draw from as your starting point to frame your research, as well as ensure that your research inquiries match what user/survivor communities identify as important subject matter. Service user/survivor researchers are prioritizing issues we identify as crucial, such as the effects of neoliberal austerity measures, racism, ongoing colonization, gender and sexual norms, imperialism, poverty, and interlocking systemic violence. We also explore how psy disciplines play a crucial role in upholding these matrixes of domination. We invite you to start your own research practices from the explicit concerns and knowledge production of people and communities grappling directly with these issues, which can thus help reduce the epistemic violence generated by our own research practices. Recognizing, contending with, and citing our (long history of) collective work is the first step in working in solidarity with us, and not simply on us.

In the last decade, numerous books, articles, journal special issues and community reports have consolidated theory, knowledge, practice, and advocacy issues that matter to services users, as well as research methods and methodologies for approaching these topics. Further, service users/refusers are community-building in innovative ways, in user-led platforms such as Recovery in the Bin, QTPOC Mental Health, Hearing Voices Networks, The National Service User Research Network, the Icarus Project, and Surviving Race: The Intersection of Injustice, Disability, and Human Rights. As we go about our research, policy, and practice adventures, either with or without service user collaborators, these resources can help frame your agendas so that they prioritize the interests of those that you study.

User/Survivor Research: A Starter Kit

Community Reports:

CAMH Community Advisory Committee for Research. (2016). Practices for community engagement in research on mental health or substance use. Toronto: Centre for Addiction and Mental Health.

Kalathil, J. (2011). Dancing to our own tunes: Reassessing Black and minority ethnic mental health service user involvement. London: Afiya Trust & NSUS.

National Survivor User Network. (2017). Manifesto: Our voice, our vison, our values. London: NSUN Network for Mental Health.

Psychiatric Disabilities Anti-Violence Coalition. (2015). Clearing a path: A psychiatric survivor anti-violence framework. Toronto.

Scholarly Books & Articles:

Fabris, E. (2011). Tranquil prisons: Chemical incarceration under Community Treatment Orders. Toronto, ON: University of Toronto Press.

Jones, N., & Brown, R. L. (2013). The absence of psychiatric c/s/x perspectives in academic discourse: Consequences and implications. Disability Studies Quarterly, 33(1), 1-27.

Kalathil, J. (2013). ‘Hard to reach’? Racialised groups and mental health service user involvement. In P. Staddon (Ed.), Mental health service users in research: Critical sociological perspectives (121-134). Bristol, UK: Policy Press.

LeFrançois, B. A., Menzies, R., & Reaume, G. (2013). Mad matters: A critical reader in Canadian Mad Studies. Toronto, ON: Canadian Scholars’ Press.

Noorani, T. (2013). Service user involvement, authority and the ‘expert-by-experience’ in mental health. Journal of Political Power, 6(1), 49-68.

Poole, J. (2011). Behind the rhetoric: Mental health recovery in Ontario. Halifax, NS: Fernwood Publishing.

Sweeny, A., Beresford, P., Fualkner, A., Nettle, M., & Rose, D. (Eds.). (2009). This is survivor research. Ross-on-Wye, UK: PCCS Books.

Voronka, J. (2016). The Politics of ‘People with Lived Experience’: Experiential Authority and the Trouble with Strategic Essentialism. Special issue on “Critical underpinnings of user/survivor research and co-production,” Philosophy, Psychiatry & Psychology Vol. 23(3/4), 189-201.

Wallcraft, J., Schrank, B., & Amering, M. (Eds.). (2009). Handbook of service user involvement in mental health research. West Sussex, UK: Wiley-Blackwell.

Journal Special Issues:

Kalathil, J. & Jones, N. (Editors) (2016). Special Issue: Critical underpinnings of user/survivor research and co-production. Philosophy, Psychiatry & Psychology, Volume 23 (3/4).

Le François, B., Beresford, P. & Russo, J. (Editors) (2016). Mad studies: Intersections with disability studies, social work, and ‘mental health.’ Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, Volume 5 (3). 


CAMH Community Advisory Committee for Research. (2016). Practices for community engagement in research on mental health or substance use. Toronto: Centre for Addiction and Mental Health.

de Gialdino, V. (2009). Ontological and epistemological foundations of qualitative research. Forum: Qualitative Social Research Vol. 1(2), Art. 30, 1-25.

Faulkner, A. (2004). The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors. Bristol, UK: The Policy Press.

Gorman, R. (2013). Thinking through race, class, and mad identity politics. In B. A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad Studies (pp. 269-280). Toronto, ON: Canadian Scholars’ Press.

LeFrançois, B. A., Menzies, R., & Reaume, G. (2013). Mad matters: A critical reader in Canadian Mad Studies. Toronto, ON: Canadian Scholars’ Press.

Phillips, R. (2006). Consumer participation in mental health research. Social Policy Journal of New Zealand, 27, 171-182.

Rose, D. (2003). Collaborative research between users and professionals: Peaks and pitfalls. Psychiatric Bulletin, 27, 404-406.

Rose, D. & Beresford, P. (2009). Introduction. In A. Sweeny, P. Beresford, A. Faulkner, M. Nettle, & D. Rose (Eds.), This is survivor research (pp. 3-10). Ross-on-Wye, UK: PCCS Books.

Russo, J. (2012). Survivor-controlled research: A new foundation for thinking about psychiatry and mental health. Forum: Qualitative Social Research [Sozialforchung], 13(1), Article 8.

Sweeney, A. (2016). Why Mad Studies needs Survivor Research and Survivor Research needs Mad Studies. Intersectionalities Vol. 5(3), 36-61.