This paper explores the implications that arise when those of us with experiences of distress/mental health system encounters deploy lived experience as expertise to produce research. In recent years, some mental health service and research systems have conceded to disability rights demands of ‘nothing about us without us,’ and slowly, select people with direct contact with psychiatric systems and experiences of distress have been incorporated as experts by experience into mental health assemblages. In my own professional encounters, I have largely (...) benefited from these inclusive, participatory, and diversity-oriented best practices: using my experiences of distress, psychiatric encounters... (shrink)

Pattadath and Rose, in their thoughtful responses, create room for textual dialogue by making connections and thinking about madness, lived experience, and research and knowledge production in other contexts. I am grateful for this engagement, and the opportunity to clarify my own thoughts, as well as generate new ones.Rose makes crucial points about the relative silence in many critical fields outside of Disability and Mad Studies and their “probably unknowing refusal to see madness as political”. This is often the case, (...) and can be extended to disability and chronic illness more broadly. At times, critical scholars in other fields show how the psy-disciplines are tools used to... (shrink)

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. (shrink)

The aim of this study is to use a commognitive responsibility framework to visualize responsibility shift in collaborative problem solving during computer-supported one-to-one tutoring. Commognitive responsibility shift means that individuals’ cognitive responsibility shift can be reflected by the discourse in communication. For our sample, we chose a 15-year-old Chinese boy and his mathematics teacher with 6 years of teaching experience, both of whom have experienced computer-supported learning and teaching mathematics, respectively. We collected four tutoring videos online, and a 45-min interview (...) video from the teacher. We found that the third type of commognitive responsibility shift in both the teacher’s and student’s CPS behavior online is not only teacher–student comparison but also alternating-led, which includes teacher–student-led and student–teacher-led. (shrink)

Voronka critically analyzes the risk of strategic essentialism while considering ‘lived experience’ as expert knowledge. Although strategic essentialism seems to be a useful category to create political solidarity among a marginalized group, it also holds the risk of essentializing experiences, and thus works against the same premises from where critical questions against dominant knowledge systems begin. While recognizing this risk, Voronka also discusses its contextual usage while dealing with a constituency—the survivors of the mental health system—that is fragile. (...) In this commentary, I bring a few points for further discussion. Does lived experience create ‘expert’ knowledge? Whose experiences are we... (shrink)

In this commentary, I would like to do three things: First, reflect on Voronka’s engagement with the critique of experience as a foundational concept and her answers to this; second, comment on how we, as both activists and user/survivor researchers, engage with other critical discourses emerging from excluded groups; and finally, offer some of my own perspectives and history as a user/survivor researcher and activist in the United Kingdom to illustrate the first two points.I agree with much of what (...) Voronka has to say about the risks of relying on ‘experience’ as an unquestioned category and how those risks are embodied today in the increasing reliance on terms such as ‘experts by experience’ and ‘people... (shrink)