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Inconvenient Complications: On the Heterogeneities of Madness and their Relationship to Disability

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This chapter argues for the need, prior to considerations of greater collaboration between disability and mental health activists and scholars, to address the tremendous heterogeneity of experiences, backgrounds, and sociopolitical positions that fall under the user/consumer/survivor umbrella. In particular, we stress the need to weigh the risks of (mis)representation (speaking for others with vastly different social and experiential backgrounds and needs) against the potential value of broader identity-based politics and coalitional efforts.
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... grassroots organizing over systemic transformation) or identity politics (e.g. stances that only voice-hearers should participate in research about HV groups) as bellwethers for "good" mental health social movement strategies for system transformation (Jones & Kelly, 2015;Kelly, 2016;Kalathil & Jones, 2016;Longden et al., 2018). Given increased interest in HV groups and their implementation in forensic, clinical, and community organizations in recent years, we maintain that this research supports a burgeoning evidence base that could have major implications for systems of care interested in adopting meaningful elements of the HV approach. ...
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The Hearing Voices (HV) Movement promotes diverse understandings of voice-hearing and seeing visions, which mental health professionals commonly refer to as ‘auditory hallucinations,’ ‘schizophrenia,’ or ‘psychosis.’ Central to this movement are peer support groups through which attendees connect with others who have similar experiences. This paper describes an adaptation of a Hearing Voices group facilitation training at VA Greater Los Angeles (VAGLA) and discusses training modifications, along with trainee perceptions and implementation and intervention outcomes. This is a first step towards adapting HV-inspired groups to VA systems of care. Data collection involved surveys of trainees (n = 18) and field notes throughout the 24 h online training. Findings indicate high acceptability and appropriateness of the training and high feasibility in implementation, suggesting the training was well-adapted to VAGLA. This research contributes to global efforts to integrate the Hearing Voices approach in diverse settings and increase awareness about its benefits among providers.
... However, alignment or agreement between those with lived experience is neither expected nor necessary for standpoint theory to pertain to the psy sciences (Jones and Kelly 2015). Individual standpoints will look different depending on unique intersecting identities, and these differences will further contribute to the advancement of knowledge. ...
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As participatory research practices are increasingly taken up in health research, claims related to experiential authority and expertise are frequently made. Here, in an exploration of what grounds such claims, we consider how feminist standpoint theory might apply to the psy sciences. Standpoint theory claims that experiences of marginalization and critical engagement can lead to a standpoint which offers an epistemic advantage within a domain of knowledge. We examine such experiences of marginalization and critical engagement in the mental health system, as well as evidence for epistemic advantages resulting from these experiences. This evidence, found in the identification of problematic assumptions and the development of new tools and theories in the field, grounds our argument that standpoint theory is indeed relevant to the psy sciences and that many of those that have experienced marginalization and engaged critically have an epistemic advantage when it comes to knowledge production. The implications of this argument are significant: those who have attained a standpoint within the psy sciences ought to be included in research and given both tools and funding to develop research programs. However, we must be weary of the risks of tokenization, cooptation, and essentialization that are likely to accompany such a transformation.
... Attention to diversity within this pipeline is also important, certainly of race, ethnicity, gender, sexual orientation, and class, but also with respect to level of disability and intersectional experiences of homelessness, incarceration, discrimination, addiction, and poverty. 8 Research funders, in turn, must implement safeguards against discrimination, communicate and enforce robust expectations for service-user involvement and leadership in research proposals, and ensure that established bodies of research do not become barriers to authentic community-led innovation. 4,9 Too often, funding processes re-inscribe existing hierarchies and established interventions by rewarding proposals that build on, and hew to, existing published work. ...
... These include issues such as the oppressive versus supportive roles of the psychiatric system and related laws; liberating versus stigmatising impacts of a diagnosis or label; relieving versus distressing dimensions of psychiatric medication and its iatrogenic effects; and diverse social justice experiences related to experiencing mental distress in specific social, economic and cultural contexts. The deeper explanation enabled by critical realism allows empirical contradiction, or 'inconvenient complications' (Jones and Kelly 2015), to be embraced and analysed through. ...
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Social understandings of mental distress have held persistent tensions with concepts used in disability studies. One means to advance stronger conceptual alliance is through critical realism. This chapter demonstrates how the application of critical realist meta-theory enables us to deepen and broaden our level of explanation when conducting empirical research with people with mental distress. In the process, the chapter shows how critical realism offers a normative bridge between social understandings of mental distress and disability studies. The chapter first describes three ‘waves’ of social research about mental distress, all of which are responses to the dominant biomedical model. It has a particular focus on survivor perspectives. The chapter then describes a fourth, emergent contemporary critical realist wave. It goes on to use the example of a recent study that uses the Capabilities Approach, a framework compatible with previous waves of social research on mental distress, to explore lived experience. The chapter shows that while the study took the analysis to a considerable depth of understanding, engaging critical realism enabled less reductionism and in particular offered a wider and deeper analysis of cause. The chapter concludes with speculations on the potential for critical realism to boundary-span social research in disability and social perspectives on mental distress.
... Secondly, the "expert" discourse of co-production calls for the legitimization of a certain kind of positionality, one that easily overlooks what Jones and Kelly (2015) have called "inconvenient complications, " complications based in the vast heterogeneity within the experience of madness and of socio-political identities. Co-production could be seen as a way of acknowledging and honoring previously subjugated knowledges. ...
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This paper examines the concept and practice of coproduction in mental health. By analyzing personal experience as well as the historical antecedents of coproduction, we argue that the site of coproduction is defined by the legacy of the Enlightenment and its notions of “reason” and “the cognitive subject.” We show the enduring impact of these notions in producing and perpetuating the power dynamics between professionals, researchers, policy makers and service users within privileged sites of knowledge production, whereby those deemed to lack reason—the mad and the racialized mad in particular—and their knowledge are radically inferiorised. Articulating problems in what is considered knowledge and methods of knowing, we argue that modern “psy” sciences instantiates the privilege of reason as well as of whiteness. We then examine how the survivor movement, and the emergent survivor/mad knowledge base, duplicates white privilege even as it interrogates privileges of reason and cognition. Describing how we grapple with these issues in an ongoing project—EURIKHA—which aims to map the knowledge produced by service users, survivors and persons with psychosocial disabilities globally, we offer some suggestions. Coproduction between researchers, policy makers and those of us positioned as mad, particularly as mad people of color, we argue, cannot happen in knowledge production environments continuing to operate within assumptions and philosophies that privilege reason as well as white, Eurocentric thinking. We seek not to coproduce but to challenge and change thinking and support for psychosocial suffering in contexts local to people's lives.
... Thus more scholarship is needed by service users, survivors, and critical professionals that interrogates psychiatry and exposes its hidden inequalities and systemic practices of epistemic violence (Burstow 2016;Russo and Beresford 2015;Timander and Moller 2016;Watermeyer and Görgens 2014). Even amidst the concern that doing 'science' excludes people who cannot live up to positivist criteria of evaluation, there is still a need for service user work to be rigorous in order to be considered credible, increase its impact, and find ways to account for the ideological and epistemological differences in class, gender, ethnicity, disability, and sexuality that shape mental health and encounters with the mental health system (Campbell 2009;Jones and Kelly 2015;Rose 2017;Timander and Möller 2016). ...
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Drawing on 5090 English reviews of 486 psychiatrists working in Canada posted on ratemds.com, this study empirically analyzes how Canadian mental health service users critique or appraise their doctors. I explore how the online realm serves as a conduit for resistance and discourses about mental health that otherwise become suppressed by psychiatric power in clinical settings. I found that when doctors did not listen to their patients, make careful attempts to learn about their lives and problems beyond their clinical symptoms, and give them a sense of autonomy, service users felt like an inconvenience. Psychiatrists, on the other hand, who were constructed as kind, compassionate, non-judgmental listeners tended to receive praise from service users. Service users who had this kind of positive experience were more likely to align themselves with the forces of psychiatric power, meaning they believed in their doctor's power to make decisions about their health.
Chapter
In this chapter, I write from the perspective of a survivor researcher: from the perspective of being an ex-user and survivor of mental health services alongside having academic qualifications. I focus on the vital role that personal narratives play in the lives of people deemed mad and the value of the knowledge that emerges when people have safe spaces in which to share their stories. I outline the role and value of the experiential knowledge that emerges from shared experiences and how this can be developed and validated through peer support, activism and survivor research. I outline the many challenges faced in the struggle to have our knowledge recognised as valid knowledge in its own right. Finally, I touch on the potential for Mad Studies to carry the baton into the future: through severing the links both with biomedical sciences and Patient and Public Involvement (PPI) and creating new links across different disciplines.
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The abstract for this document is available on CSA Illumina.To view the Abstract, click the Abstract button above the document title.
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