Recently, I’ve been forced to confront the issue of disclosure and positioning in academia from multiple angles: in the context of a conference for user/survivor graduate students I’m co-organizing, within my research team/lab and the International Consortium on Hallucination Research’s interdisciplinary phenomenology working group (my friend/colleague Clara—please check out her recent novel!– and I are the only members with lived experience of psychosis and also the only graduate students), and as an plenary panelist (explicitly qua user & user researcher) at the annual conference of the International Congress on Schizophrenia Research.
To disclose one’s psychiatric disorder in an academic context, conventional wisdom tells us, is to expose oneself to multiple forms of stigma, including assumptions that one’s research is biased, politically motivated, or less “rigorous,” doubts about one’s ability to withstand the pressures and stresses of academic life, and suspicions that one’s successes, awards, invitations and so on are due more to tokenism, political correctness or even pity, than actual talent, merit or academic accomplishment.
Undeniably, these tropes circulate broadly, and virtually no user researcher I know is unaware of them—there is, clearly and undeniably, prejudice in the academy. These more obvious forms of mentalism are, however, only part of the problem. A different from of academic stigma also clearly masquerades in the ‘celebrification’ of select academics who, for one reason or another, seem to revel in forms of academic influence explicitly grounded in the juxtaposition of their (ubiquitously dramatic) experiences of madness and certain popular markers of ‘brilliance’ or achievement (attending elite schools, getting particular positions or awards or degrees, and so on)—juxtapositions rarely if ever tempered by acknowledgement of the role of class, wealth and other forms of sometimes extreme material, social and intellectual privilege). A desire to avoid discrimination is hence not the only factor that might influence non-disclosure, but also the desire not to be seen as self-indulgent, self-absorbed, opportunistic or completely out of touch with more ordinary experiences of psychiatric disability.
Nevertheless, I want to argue, questions regarding the ethics of nondisclosure (or passing) are complex. First of all, identity categories & membership are by definition social. To refuse a particular label (e.g. “user” or “survivor”) is never simply a personal choice but also necessarily (?) entails an often creepingly expansive disavowal of the community of or in which one will not publicly claim membership. Stigma, that is, fundamentally cuts both ways—virtually always implicating the individual and the social with the same uncertain stroke. Social fear drives shame, but shame equally—and perhaps far more insidiously—legitimizes, affirms, energizes that fear; feeds it. (“If you effectively concede the legitimacy of unjust social judgments, this concession implicates, burns, sears me who shares the same identity.”) There is also the matter of privilege. Although I would never simplistically frame the power to ‘pass’ as synonymous with ‘privilege’ in the colloquial sense, there are many ways in which more powerful (whether because of wealth, education or circumstance) and less visibly “ill” individuals can and do disavow the social identities to & with which less-fortunate-others are tightly bound (cf Stefan, 2001), further sedimenting stereotypes about the target group. (“Almost all” poor, uneducated, unemployed, un-partnered, and so forth. Or celebrities and geniuses.) In research contexts, forms of passing introduce additional ethico-political risks given the differential power of the researcher who can choose not to disclose, and the research subject (or “community co-researcher”) who is most often included minimally but necessarily on the basis of membership in the target class. Finally, nondisclosure and passing risk individualizing larger social problems by affirming individual non-disclosure and/or ‘adaptation’ rather than challenging more fundamentally problematic social and institutional structures and norms. These norms will not change if they are not (collectively) challenged.
Another pervasive problem with the logic of non-disclosure or passing follows from the assumption that certain types of experience, to some extent regardless of context, are systematically more or less valuable or even wholly value-less. Thus both critiques and defenses of user-led research often center on either the (arguably fetishized) value of certain psychiatric experiences or, conversely, the claim that such experiences are of profoundly less value than so many others that are normatively privileged in academic life. To take a useful example from my former life as a continental philosopher, it is clear in such circles that fluency in the major continental languages (French, German and Greek) is not only expected as a ‘training goal,’ but that individuals who (often simply by virtue of birth, parentage or childhoods spent in Europe) are (already) fluent or multilingual are not only justifiably privileged/valued translators, but also valued textual theorists, able to skillfully navigate the slippage between languages, the simultaneity of loss and remainder, and, perhaps above all, so very much cultural, social, and bodily context. (“One of the definitions of what is called deconstruction would be,” Derrida writes, “the effort to take…limitless context into account, to pay the sharpest and broadest attention to context, and thus to an incessant movement of recontextualization. The phrase which for some has become a sort of slogan, in general so badly understood, of deconstruction (“there is nothing outside the text” [il n’y a pas de hors-texte]), means nothing else: there is nothing outside context.”)
Diagnoses, voices or certain experiences such as involuntary hospitalizations are ever-so-transparently not all that matters in mental health research, but equally transparently often of extraordinary value. And as with linguistic fluency (fluency that is often, to repeat, just as ‘unearned’ as madness), the sole value of such experience does not lie in the ‘mere’ experience, but an ability to translate that experience into a critical and productive tool in the broader context of research; to read and write ‘texts’ differently, to connect, socially and psychologically, with others in ways that might not otherwise be possible, to tease out tensions, undecidabilities, and latent themes that particular experiences uniquely enable one to identify. Substantial experience with quantitative methods or grantwriting is rarely all that different—the more of it you’ve done, the more easily you can navigate and ultimately affect the micro and macro-conditions of that particular domain of academic work.
Finally, the prominence of overly-polarized academic horror stories and romances belies the reality that for most students and academics, identification as a user/survivor will likely be (like so many things) stigmatized by some, valued by some, and romanticized by others. (With perceived behavioral deviance, I often think, leading far more strongly to actual discrimination than any label.) Secrecy not only helps normalize the perceived ‘deviance’ of certain experiences (and not others), but also invests them with a mythic, and paradoxically self-produced or auto-generative power; finally, to follow Goffman, “overwhelming” other aspects of identity.