Heterogeneities of experience, positionality, and method in user/survivor research

Jasna Russo (2016) argues powerfully for survivor-controlled narrative research as a counterpoint to ‘conventional narrative research,’ in which a clear dichotomy obtains between the researcher who interprets and the participant whose narrative is interpreted. Russo calls us to an ethic of engagement and a focus on dialogic relationships within the research process as a way to disrupt the potential for ‘epistemic violence’ in conventional narrative research, and toward the development of a survivor owned ‘model of madness.’ Herein I extend the discussion of intersectionality that Russo opened. In particular, I ask: What theoretical resources and scholarship can we draw upon to support the kind of critical reflexivity that Russo asks of us so that we may more meaningfully engage the heterogeneous range of user/survivor experiences and positionalities?

Heterogeneity of Survivor Experience

Particularities of distress, services use experience, local contexts, and cultural and socioeconomic backgrounds are among the many textures that contribute to the heterogeneity of service user/survivor experiences (Jones & Kelly, 2015) These textures can influence the degree to which an individual experiences an intervention as helpful or harmful, the salience of (and access to) explanatory frameworks or idioms of distress, and the resonance of survivor counternarratives. Distressing or unusual experiences targeted by therapeutic interventions are heterogeneous both within and between putatively circumscribed descriptions or diagnoses. For instance, ‘hearing voices’ generally captures—or inscribes—a different set of experiences than does ‘depression.’ Indeed, two persons may use the term ‘hearing voices’ to describe experiences that are markedly different. Some persons’ experiences of distress are brief and completely resolve, whereas for others they are more enduring. These textures are further entwined with what I will gloss here as social identity categories such as ‘race,’ ‘ethnicity,’ ‘gender,’ ‘sexuality,’ and ‘disability’—each indexing an equally heterogeneous set of experiences—that further inflect lived experiences. Given such heterogeneity, what possibility is there for developing a ‘model of madness’ as Russo calls for?

In writing about Meri Nana-Ama Danquah’s autobiography Willow Weep for Me (1999), focused on her experience as a Ghanaian American woman with depression, Mollow (2013) calls attention to the need for methods that can account for multiple forms of oppression within disability and ‘mad’ scholarship. Mollow traces the ways in which Danquah’s narrative diverges markedly from those most often emphasized within the user/survivor movement, noting that, although Danquah is aligned with the psychiatric survivor movement in her commitment to self-determination, her narrative is a:

critique of the politics of race and mental illness [that] exposes and protests linguistic, social, cultural, and economic barriers that impede black women with depression from accessing health care.

(p. 415)

That is, whereas narratives associated with the survivor movement strongly tend toward ‘heroic’ narratives of escape from psychiatry (Morrison, 2006), Danquah’s offers an inverse narrative focused on the challenges of obtaining care in her community, rather than escaping psychiatry. Weiner (2015) notes how the complex dynamics of the predominantly low-income and Black mental health movement’s protests against mental health clinic closures on Chicago’s South Side are silenced or become fraught in their audibility along intersections of racial identity, class and mental illness. In discussing a British Psychological Society report on psychosis, widely hailed for its substantial inclusion of user/survivors in its development, Kalathil and Faulkner note “the conspicuous absence in the report of any meaningful engagement with the more than 60 years of scholarship about ‘race,’ ethnicity and psychiatry/psychology” (2015, p. 22).

These are but examples of authors whose work points to ways in which inflections of racial identity, class, gender, and disability texture experiences and narratives of distress and services use in particular contexts in fundamental ways, and that the knowledge so obtained is marginalized not only in dominant biomedical narratives, but often in the collective narratives of service users, survivors, and ex-patients.

I do not mean to suggest that one narrative trajectory will necessarily be more salient along any given dimension—or intersection—of experience, but rather that the survivor movement and survivor research is only beginning to grapple with...