Hiding in Plain Sight

An Academic journal I was not previously aware of, the Schizophrenia Journal on X/Twitter recently profiled a project designed to integrate lived experience of schizophrenia (by the human research subjects / participant-observers) into scientific medical research. It highlights the AMP® SCZ program, a global initiative integrating lived experience into psychosis research, evidently aligning with a broader movement in mental health to prioritize patient perspectives in scientific studies. Their affiliate in Melbourne, Australia is the PRESCIENT network, led by the University of Melbourne, one of two research networks in AMP® SCZ, comprising 17 of the program’s 42 global study sites.

Integrating qualitative narratives in this way is arguably an initiating transformation of what Disability Studies had delineated as the dominant "medical model" (as opposed to the "social model") of disability (including psychiatric conditions / neurodivergence). Narrativized lived experience, is of course a core principle of autoethnography, having incorporated in its evolution so called "therapeutic writing". Such writing is not usually published as neither literary "merit" nor peer review "validity" is its concern, thus not an assessment criteria. Either way, it is that specific context of lived experience (of schizophrenia) in autoethnographic research that interests me as an autoethnographic filmmaker / digital publisher. Not simply interests me, it is an innate condition of the way in which I perceive the world.

Without delineating too much, much of my adult life has, in some way or another, been informed by this particular lived experience context. It motivated my independent research into, initially, representations of disability (broad context) and schizophrenia (specific interest) within, in this instance, Australian film. A proposal to follow through on this research topic led to my award of a grant through the then auspices of ArtsSA (what was at the time incorporative of the Richard Llewellyn Arts & Disability Trust Foundation) and ultimately the subsequent award of a SAR Research Fellowship at Australia's National Film & Sound Archive [NFSA].

There I assembled a lengthy monograph, a chronological case by case account of the topic: however, being methodologically informed by the Disability Studies social model prism, the results were not exactly supportive of - in particular - government policy towards disabled people. My staff presentation was duly received, however the monograph I presented - admittedly only a first draft - is evidently irretrievable. The original manuscript submitted - a first draft (and in much need of re-writing) - I uploaded to my account on Academia.com (and is available for PDF download on the Index page to this website) but could elicit no interest from publishers (uncommercial). Follow-up hopes to mobilize this research and Fellowship subsequently eroded, and I made the decision to try EFL teaching in China, as a complete break from Australia, arriving first in Xinjiang [XUAR} in 2011/09. That's effectively when the video footage used in this autoethnographic project / website begins. This blog post then (and any additions to it over time) and the Patreon content hence comprise the backstory.

Always_an_Other_Representations_of_Disab (1).pdf

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Either way, as an autoethnographic filmmaker with lived experience of the AMP® SCZ program's research focus - indeed, almost 35 years now of such lived experience - the montagist approach I utilize in my films was delineated methodologically with the specific intention of facilitating a phenomenological rendering of the meta-cognitive, perceptual dimension of this lived experience: i.e. how I, informed by such lived experience see / perceive the world I observe around me, interact socially within it at a human level, cognitively assess it, and incorporate it (or not) into my sense of "self" - how it informs my lived experience. Yet, perhaps out of shame or social stigma, I have never acknowledged that dimension to my work, dominant though it is, for to do so comes with an admission, at the very least to having lived a life hiding within plain sight.

At this point in life, however, I return to it. Not by lengthy exegesis - as I doubt anyone would be interested enough to read such (though my attempts at contextualizing it are available as PDF downloads in the index to this website). But by presenting several short films which explicitly sought to render this perceptual experience, within an inter-cultural framework. However, much of the visual content of these films is not suitable for a general audience: consequently, they will be made available as exclusive content on this website's tie-in digital publishing Patreon account. It's my lived experience, my perception: I share it with you by invitation, on the basis of the context here wherein it is introduced. Welcome to join / view at Patreon.

That said, while a SAR Research Fellow at the NFSA, I completed my first two short feature-length experimental (auto-)ethnographic documentaries. Both concerned a then emerging nexus of disability arts and underground LGBT+ spoken word performance poetry. Of these, only the second was made publicly available, and is presented here as an introduction to an "alternative" filmmaking style, attempting to aesthetically integrate a perceptual rendering of the lived experience now attracting research interest as outlined at the start of this blog. But, using only the extremely low-budget, available resource type approach that characterized the fringe sub-culture and its Warholian "superstars" being profiled. Its rough, raw, "unprofessional" and, of course, of no commercial interest and possibly no artistic merit. But: it is what it is of its time.

NOTE: Embedded video is hosted on YouTube and may require a login to view from this site.

An attempt at an autoethnographic Academic reflection on the making of these films is also here available, for additional context, if of interest. It is also linked to on this site's project index page.

GGKEY_N75UP4CQBLD.pdf

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Surrounding the two feature-length experiments were several short films exploring the broader social milieu of this underground, Adelaide South Australian subculture. They were released on social media at the time, but are now perhaps only of niche archival interest. Nevertheless, I also include them here as an appendix of sorts. But with a note: these films were credited to a pseudonym adopted while trying to venture into underground digital publishing so as to experience first-hand the sub-culture being chronicled: participant-observation. I don't care to remember this time of my life, but...