Two weeks ago (three?) I was in (‘weird’ & beautiful) Portland, Oregon, for the 2012 Alternatives conference. Due to subsequent travels, I didn’t have a chance to actually type up my notes (select themes & highlights) until today. Here they are:
Many of my richest conversations took place, one on one, with coffee or a glass of wine, outside of the conference’s formal sessions and institutes. A surprising number of these discussions eventually turned to the question or problem of how to define the boundaries of a “peer” (increasingly, I think, the preferred term for consumer/user/survivors—a trend, I’ve heard from friends in Canada, that also seems to hold north of the border). I’ve mentioned some of the controversies around this issue before, and many of the concerns I heard in Portland were unsurprising: how to square, for example, the fact that the majority of the American population now receives some form of psychiatric drug (if not a formal Axis 1 diagnosis), while others navigate mental states they understand as forms of “madness” without any formal involvement with the mental health system. The privileged role of (only certain) ‘lived’ experiences in the context of peer-provided services also came up repeatedly. A non-user female therapist with personal experience of rape, as one of my interlocutors pointed out, might be far better ‘matched’ with a rape survivor (with a label of schizophrenia) than a male therapist with lived experience of psychosis but no experience of trauma or sexual assault. Provocatively, this (over)emphasis on (or even fetishization of) particular experiences or (psychiatric) labels but not others (non-traditionally psychiatric labels or identities) seems to unwittingly reflect and even reinforce the very diagnostic system (and clinical service boundaries) many activists otherwise work to unsettle or overturn. Still others mentioned concerns about “co-opted” peers whose ‘recovery stories’ emphasize the “permanence” of medically-defined brain-based psychiatric disorder(s) and the need for lifelong medications. (“Sometimes the non-user providers are far more progressive than the peer providers, what do we do about that?…”)
On the other hand, most of the individuals I talked with seemed (simultaneously) acutely (almost painfully) aware of the (sometimes substantial) sociopolitical advantages of “peer-only” positions, including the career opportunities they create for financially disenfranchised service users, the clinicopolitical import of publicly troubling the boundaries between ‘clinician’ and ‘patient,’ the historical significance of peer-led services qua the ‘fruition’ of a (the?) central goal of the early c/s/x movement, and the (sometimes) extraordinary & incomparable insights of “guides” with lived experience of various forms of madness. (I was certainly witness to the latter in a fantastic and inspiring Alternatives ‘institute’ I attended on peer-run alternative crisis respites.)
What to do? No one I talked to seemed certain, but their (almost ubiquitous) willingness to question the boundaries of identity without any immediate solution or answer, impressed me very deeply.
(2) Generational issues
Another common theme revolved around various generational tensions within the US peer movement. Sally Zinman, for instance, kicked off the first full-day with a rousing, but also internally troubled history of early c/s/x organizing. Although she acknowledged that, back in the day, “a SAMSHA funded conference would have been unthinkable” and emphasized the almost paradigmatic shift from the radical separatism of the 60s and 70s to cooperation and collaboration with “the feds and the system” (beginning in approximately the mid 80s), the (many) lingering controversies of this shift—and the resulting splintering of groups and c/s/x values—went noticeably undiscussed. Outside sessions, the younger (40 and under) attendees I talked to expressed a variety of opinions regarding generational differences within the movement (and at Alternatives), ranging from concerns with the extent to which older activists have “sold out” to the feeling that (conversely) many older activists don’t understand how much mental services have improved. One of my interlocutors, for instance, emphasized how grateful he was to his providers (& even psychiatrist) and located the primary source of his negative experiences outside the mental health system–in work, school and the community. (Certainly my personal experiences in academia have been far worse than in the mental health system….)
(3) Research and the US peer movement
Unsurprisingly, I also ended up conversing with a number of peer graduate students and/or recent PhDs about more literally “academic” issues. The rough consensus seemed to be that there was little space for discussing and exploring more “research-oriented” issues at Alternatives; several people independently mentioned the pervasiveness of American “anti-intellectualism” (as evidenced by the conference program and selection of speakers and panels), while another noted that “at Alternatives you need to leave your academic degrees and credentials at the door.” Although I couldn’t make it to Cardiff, the difference between the tracks and panels at the 2012 Hearing Voices Congress–which included many accessible but robust “academic” presentations–and Alternatives, was undeniably striking.
Specific issues regarding identity and generational differences also surfaced in the context of research. What does (could/should) it mean to identify as a “peer” researcher? How can younger investigators best navigate the (mixed) “legacies” of first-generation American consumer/survivor researchers? Of particular interest to me in these conversations was the sometimes sharp mix of advantages and disadvantages different individuals described with respect to disclosure and ‘self-marketing’ as a “peer.” On the one hand, disclosure can obviously lead to significant uncertainties (& many negative psychological sequelae) regarding the extent to which any accolades or academic invitations are motivated by individuals’ ‘objective’ academic accomplishments, or by tokenism, a need or desire for some sort of moral expiation (on the part of institutions or established researchers), or some (uncomfortable) synthesis of these and other influences. Out in the “real world,” there seem to be several unsettling examples of individuals who were initially elevated to positions that arguably exceeded their actual accomplishments, but ultimately discarded by their institutions or collaborators. Others (I’m consciously avoiding names!) appear to have been catapulted into the role of national spokespersons & “superstar advocates” following late-career disclosures (without having ever previously taken active public roles in the user/survivor movement–presumably due, at least in part, to fears precisely apropos disclosure). On the other hand, it seems clear that in at least some contexts and settings, experience as a public (“deeply engaged”) activist or advocate (and researcher) can lead to unique and important insights (e.g. with respect to power, appropriate design considerations, research methods, questions, nuances), access to hard-to-reach populations, and more immediate rapport with participants; once again, then, many questions & uncertainties, and no easy answers.
(4) Hearing voices and the exclusion of other ‘mad’ experiences
My conversations about the hearing voices movement were far fewer and here the dominant ‘theme’ seemed to revolve around the problem of of the Hearing Voices Movement’s (arguable?) over-emphasis on voices (over & above other manifestations of ‘madness’), or even (functional or implicit) exclusion of these experiences. I admittedly do not (but would love to) know what sorts of conversations around these issues have already transpired among user/survivors, voice hearers & allies in the UK. At the very first public presentation I gave on the hearing voices movement here in Chicago, several users came up afterwards and expressed concerns that (1) they experienced “delusions” or mania but not voices (or a strongly intertwined combination), and therefore did not feel included by my presentation or (2) hear voices but explicitly didn’t want to isolate voice hearing from their other experiences (including not only other types of ‘psychotic’ phenomena, but also depression and anxiety). In subsequent presentations, clinicians have expressed parallel concerns. This is certainly an issue I need to think more about as Chicago Hearing Voices develops—any input/thoughts would be most welcome!