Earlier this year, Hearing the Voice offered two travel bursaries to support a peer-group facilitator from the hearing voice community as well as a researcher with an interest in hallucinations to attend the Inaugural North American Conference of the International Consortium on Hallucination Research (ICHR), 26-27 September 2016, at the University of Illinois.
In the first of two reviews of the inaugural North American Conference of the ICHR, Jordan Goldstein offers his perspective below as a PhD candidate in Medical Anthropology and as an expert of lived experience. You can read Kate Hill’s review here.
As a first-semester PhD student in Medical Anthropology, attending the ICHR Conference in Chicago was a preliminary exercise in participant-observation (mostly observation). My “lived experience” added another dimension to my positionality as observer (as well as student of anthropology). From these vantage points, I really appreciated the conference as a meeting of diverse perspectives, an example of the interdisciplinarity I’ve come to understand as popular in my field. At the same time, I found parts of it to be challenging. Here are some of my thoughts:
Within and across a number of presentations, I noticed “schizophrenia,” “psychosis” and “voice-hearing” all being used in what appeared to be an interchangeable, quasi-synecdochic relationship. Because I’ve had experiences labelled “psychosis” (but not the voice-hearing commonly associated with it), this was troubling – just as I imagine it would be for people who hear voices without an identity/diagnosis of schizophrenia, or any other permutation of potentially stigmatizing, generalizing labels. While understandable because of the overlap in criterion, I see this conflation as making communication less effective in its logic and consistency, and less respectful to those it implicates.
While acknowledging that diagnostic labels dominate research (most often due to funding requirements), a rise in trans-diagnostic voice-hearing research, as well as HVN and related approaches, demonstrate increased interest in working “outside schizophrenia.” That being said, a striking moment was when a larger-than-life Marius Romme stated, over Skype, that “the diagnosis of schizophrenia has a scientific validity of zero.” I felt Romme’s words land awkwardly amidst a program of so much schizophrenia-based or at least schizophrenia-dependent work. Yet, his statement went unaddressed in the following panels. Perhaps because of my newcomer status in this conversation, I continue to imagine a starting point for grounded interdisciplinary dialogue and research to be a direct conversation about the validity and utility of “schizophrenia.” I would suggest that the extreme range of opinions on this issue warrants cross-disciplinary dialogue. However challenging that might be, it’s a conversation I look forward to.
Finally, I found the inclusion of those from the “discipline” of lived experience to be particularly inspiring and instructive. In speaking about themselves (rather than about their research on others), their presentations reflected a vastly different epistemology, as well as tone – best exemplified by Eleanor Longden’s invocation of a “human rights campaign” with respect to voice-hearing. Perhaps because of my own experiences – my journey of healing through resistance, and more recently, of leaving peer support work with the hope of embodying “change agent” in my academic career – I found these testimonials not only unique in their sense of urgency, but in their communication of just what is at stake in our collective enterprise. In this way, I see “lived experience”discourse and its moral messages as not only inspiration, but cautionary tale; as offering direction to research, and more importantly, purpose.
I feel fortunate to have had the opportunity to take part in this diverse gathering, and grateful to all who hosted and travelled, who participated and observed. I look forward to the next one, and continuing the conversations.
Correspondence to Jordan Goldstein.