Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review

Mental health lived experience narratives are first-person accounts of people with experience of mental health problems. They have been published in journals, books and online, and used in healthcare interventions and anti-stigma campaigns. There are concerns about their potential misuse. A four-language systematic review was conducted of published literature characterizing uses and misuses of mental health lived experience narratives within healthcare and community settings. 6531 documents in four languages (English, Danish, Swedish, Norwegian) were screened and 78 documents from 11 countries were included. Twenty-seven uses were identified in five categories: political, societal, community, service level and individual. Eleven misuses were found, categorized as relating to the narrative (narratives may be co-opted, narratives may be used against the author, narratives may be used for different purpose than authorial intent, narratives may be reinterpreted by others, narratives may become patient porn, narratives may lack diversity), relating to the narrator (narrator may be subject to unethical editing practises, narrator may be subject to coercion, narrator may be harmed) and relating to the audience (audience may be triggered, audience may misunderstand). Four open questions were identified: does including a researcher's personal mental health narrative reduce the credibility of their research?: should the confidentiality of narrators be protected?; who should profit from narratives?; how reliable are narratives as evidence?)

Troubling Inclusion: The Politics of Peer Work and 'People with Lived Experience' in Mental Health Interventions

Abstract This thesis is a study of how some mad people come to be known as ‘people with lived experience,’ an emerging identity and strategic essentialism which attempts to valorize the knowledge of those with experiences of distress/mental health system encounters. Currently, claiming such an identity authorizes us to work professionally as peer workers within mental health research and service systems. Thus, by virtue of our ‘lived experience,’ the peer worker becomes enmeshed in the governance of ‘similar others.’ This study maps the emergence, performance, and performativity of the peer worker through the case study of the At Home/Chez Soi project (2009-2013), a national research demonstration project which both implemented services and studied their effects to learn how to best manage the ‘chronically homeless mentally ill’ in Canada. Because peer inclusion is now considered a best practice in mental health interventions, peer workers are key paraprofessionals recruited to be part of the project assemblage. Through ethnographic and interview data, I offer a critical analysis of how peer participation is mobilized and put to work within the confines of mental health governances. By demonstrating how peers actively work to self-govern our subjectivity and subject-positions to become recognizable as peers, this work denaturalizes peer identity. I argue that peer work is ‘bridge work:’ we work as informants to bridge the divides between respectable and degenerate bodies in order to help inform neoliberal governance. Key to this process is peer storytelling, a central way in which our experiences become commodities, consumed as recovery narratives which help maintain us as the problems that need to be fixed. The study elaborates two main conclusions that elucidate a paradox inherent to peer work. First, that our participation is conceived as useful when the target of our experiential knowledge is directed at managing abject populations. Secondly, that when we make attempts to deploy our knowledge to challenge the regimes of truth and practices that govern us, this work is troubled and managed. In this way, peers workers, through practice, learn the rules of engagement that govern our inclusion within the folds of systems of power.Ph.D.2018-02-19 00:00:0

Troubling Inclusion: The Politics of Peer Work and 'People with Lived Experience' in Mental Health Interventions

Abstract This thesis is a study of how some mad people come to be known as ‘people with lived experience,’ an emerging identity and strategic essentialism which attempts to valorize the knowledge of those with experiences of distress/mental health system encounters. Currently, claiming such an identity authorizes us to work professionally as peer workers within mental health research and service systems. Thus, by virtue of our ‘lived experience,’ the peer worker becomes enmeshed in the governance of ‘similar others.’ This study maps the emergence, performance, and performativity of the peer worker through the case study of the At Home/Chez Soi project (2009-2013), a national research demonstration project which both implemented services and studied their effects to learn how to best manage the ‘chronically homeless mentally ill’ in Canada. Because peer inclusion is now considered a best practice in mental health interventions, peer workers are key paraprofessionals recruited to be part of the project assemblage. Through ethnographic and interview data, I offer a critical analysis of how peer participation is mobilized and put to work within the confines of mental health governances. By demonstrating how peers actively work to self-govern our subjectivity and subject-positions to become recognizable as peers, this work denaturalizes peer identity. I argue that peer work is ‘bridge work:’ we work as informants to bridge the divides between respectable and degenerate bodies in order to help inform neoliberal governance. Key to this process is peer storytelling, a central way in which our experiences become commodities, consumed as recovery narratives which help maintain us as the problems that need to be fixed. The study elaborates two main conclusions that elucidate a paradox inherent to peer work. First, that our participation is conceived as useful when the target of our experiential knowledge is directed at managing abject populations. Secondly, that when we make attempts to deploy our knowledge to challenge the regimes of truth and practices that govern us, this work is troubled and managed. In this way, peers workers, through practice, learn the rules of engagement that govern our inclusion within the folds of systems of power.Ph.D.2018-02-19 00:00:0

“Recovering our Stories”: A Small Act of Resistance

This paper describes a community event organized in response to the appropriation and overreliance on the psychiatric patient “personal story” within mental health organizations. The sharing of experiences through stories by individuals who self-identify as having “lived experience” has been central to the history of organizing for change in and outside of the psychiatric system. However, in the last decade, personal stories have increasingly been used by the psychiatric system to bolster research, education, and fundraising interests. We explore how personal stories from consumer/survivors have been harnessed by mental health organizations to further their interests and in so doing have shifted these narrations from “agents of change” towards one of “disability tourism” or “patient porn.” We mark the ethical dilemmas of narrative cooptation and consumption, and query how stories of resistance can be reclaimed not as personal recovery narratives but rather as a tool for socio-political change

Uses and Misuses of Recorded Mental Health Lived Experience Narratives in Healthcare and Community Settings: Systematic Review

Mental health lived experience narratives are first- person accounts of people with experience of mental health problems. They have been published in journals, books and online, and used in healthcare interventions and anti-stigma campaigns. There are concerns about their potential misuse. A four-language systematic re- view was conducted of published literature characterizing uses and misuses of mental health lived experience nar- ratives within healthcare and community settings. 6531 documents in four languages (English, Danish, Swedish, Norwegian) were screened and 78 documents from 11 countries were included. Twenty-seven uses were iden- tified in five categories: political, societal, community, service level and individual. Eleven misuses were found, categorized as relating to the narrative (narratives may be co-opted, narratives may be used against the author, narratives may be used for different purpose than autho- rial intent, narratives may be reinterpreted by others, narratives may become patient porn, narratives may lack diversity), relating to the narrator (narrator may be sub- ject to unethical editing practises, narrator may be sub- ject to coercion, narrator may be harmed) and relating to the audience (audience may be triggered, audience may misunderstand). Four open questions were identified: does including a researcher’s personal mental health narrative reduce the credibility of their research?: should the con- fidentiality of narrators be protected?; who should profit from narratives?; how reliable are narratives as evidence?