A recent series of tweets by @maddoggiejo on social justice (housing, welfare, disability supports), “recovery stories,” and voices, reminded me of the importance of ongoing efforts to inject “recovery” discourse with reminders of the powerful and complex intersections between class, poverty, marginalization and the development, course and impact of voices/psychosis.
Stories of individual overcoming, cure or recovery—a genre long identified and critiqued in the broader fields of disability and race studies—are frequently used by activists, academics, policymakers and the media, in efforts to mitigate stereotypes, prejudice and stigma. There is a fairly obvious dark side to these narratives, however, stemming in part from their tendency to reinforce individualistic, neoliberal constructs of agency and market-driven indications of success (read: the schizophrenic-turned-lawyer/CEO/physician/PhD/public icon), and in part from their implicit silence regarding the complex ways in which various forms of structural and biocultural marginalization shape the lives and fortunes of service users with psychosis. The same neoliberal logic arguably extends to many 20th century incarnations of trauma discourse: discourse which more often than not revolves around recognizable, identifiable individual trauma(s), typically psychic or psychological in nature and that can (with more or less effort) be located within the temporality of single life narratives. Although the US “certified peer specialist” movement has been accused of commodifying support (again, in the neoliberal sense), the promotion of unpaid, informal peer support (including that of ‘grassroots’ organizations like Alcoholics Anonymous) also risks reinforcing class hierarchies, the continued underfunding of public mental health and welfare, and neoliberal, gendered and racialized norms concerning the types of work that should or shouldn’t be “paid.”
If we survey the anthropology and psych(iatric) epi(demiological) literatures, it’s clear that such factors as racial/ethnic minority status, poverty, social marginalization, exposure to structural violence, and low family SES, all predict (a higher prevalence of) psychosis and/or voices, lower rates of recovery, greater distress and disability and so forth (Brenahan et al., 2007; Kelly, 2005; Luhrmann, 2007). Other ‘negative’ outcomes—including increased rates of incarceration, substance use, aggression and distressing persecutory beliefs—are likewise linked to the intersections of race, gender, class, and neighborhood of origin (Bruce et al., 2012; Cold et al., 2013; Yamada et al., 2006; Thornicroft, Davies & Leese, 1999). Importantly, marginalized sociopolitical neighborhoods and environments do not merely engender developmental contexts in which ‘individual’ trauma is more likely to occur, but also correlate with prenatal malnutrition, food deserts, far-reaching maternal and early childhood health disparities, early exposure to environmental toxins and illicit substances (all potentially neurotoxic), higher rates of co-occurring physical and developmental disabilities, ‘passive’ exposure to structural and gang violence, and tragic, multidimensional disparities in access to quality education. These myriad forms of biocultural marginalization directly and indirectly impact the individual in complex ways—at the level, e.g. of, epigenetics, developmental neurobiology, physical health, cognitive development, psychological well-being, cultural and sociopolitical identification, academic achievement, employment and so on.
As an illustration of just how messy it gets, some excerpts from a focus group I conducted last week in the heart of Chicago’s notorious “south side”: exiting the Dan Ryan Expressway south of Bronzeville and circling the neighborhoods just east of the city’s now infamous Cornell Square Park, one sees no sidewalk cafes, no grocery stores; windows are boarded up or shuttered, a few fried chicken and burger joints checker the corners of busier intersections, doors and windows protected by heavy iron bars and grates, cashiers standing behind an internal cage of bullet-proof glass. The service users I meet with in a new transitional mental health program here have, on average, been shuttered away in south side nursing homes or IMDs (“Institutions for Mental Diseases”) for an average of 10-15 years. Some were only 18 when they were first locked away; many of them never finished high school, some didn’t finish junior high; about half the participants in my focus group don’t understand the demographics form or can’t read it. “What is “gender”?” “What’s sexual orientation?” “I can’t spell ‘schizophrenia.’” “’Sexual orientation’ means whether you’re a man or woman,” a staff member suggests; I quietly clarify. After introductions, I ask the group how they understand voices—when their voices started, what they think caused or provoked them.
“Let’s go with that, what makes it complicated?”
The sort of stories I hear are: mothers drinking or “drugging” during pregnancy, parents who OD’d or split or ended up in jail when their kids were toddlers; older brothers who were shot in gang crossfire; epilepsy, learning disabilities, health problems, poor nutrition. TBI from this or that accident, this or that fight. Embedded also are stories of “genetics” (parents, siblings, aunts and uncles who also hear voices or are “mentally ill”) and religion (God is the one talking, God is testing the voice hearer, maybe the devil too; God and the devil both were at Cornell Square); these things need not be understood as contradictory. Meds are sometimes a godsend, psychiatrists “aren’t always so bad,” a pastor can help discern which voices belong to whom (God or Satan). Sometimes it just helps to know that, at the end of the day, God controls all of this; God is always here. The divisions between the “biological” and the “psychosocial” that we often assume, and perhaps even far too often impose, diffuse within these narratives as quickly as a smoldered cigarette butt. I’m tempted to ask what “genes” or “illness” even mean to them, but already know it’s nothing so simple or clear or clean as what I was taught in undergrad biology.
As per my own protocol, I’m “supposed” to ask questions related to how interested these participants might be in more individualized therapy; in exploring the connections between their voices and life narratives, their voices and “trauma”; “hearing voices movement” approaches, perhaps. What, in this individualized sense, might they want to see changed or improved about the transitional service program they’re currently enrolled in. Deep down, I know before asking, these are probably not the right questions. No, these are definitely not the right questions. In fact, the class dynamics of it all—me there with my privileged, middle class ideas of what “engagement” and “healing” mean—is enough to make me feel more than a little queasy. I ask them anyway.
For a second, a participant on my right side stares at me as if he might have misunderstood. Then his face flushes (anger, not shame, or so I assume). In my mind, his mind is racing with thoughts like “who the fuck does this white girl think she is; wasn’t she listening to what we said”. He pushes back in his chair and for a drawn out moment I brace myself, expecting him to stand up and walk out on the group. “Independent housing, supported employment—[this program] doesn’t need to change, it just needs to be available to everyone still locked away in nursing homes. We need to get them out.” There’s an edge to his voice, but also a politeness that, I think to myself, I couldn’t (or wouldn’t) manage if I were in his shoes.
“Okay,” I say to myself, “am I really going to do it—am I really going to say, “but what might make the voices less distressing” (‘cause that was what I actually came here to ask y’all about); am I really going to keep bringing it back to that?
I’m well aware, of course, that there are many, relatively “purer”–less complex, less over-determined–cases of psychosis, voices, recovery. Lawyers who hallucinate, white middle class sons and daughters diagnosed with “schizophrenia” their first or second year of college. “So full of potential and then it all just slipped away.” I understand the importance of stories and narratives that resist assumptions of deterioration; of automatic, generalizable ‘dangerousness’; of inevitable chronicity; of an inability to “succeed” in any conventional sense. There’s that.
But ‘that’ does little to illuminate this ‘other’ world, this other continent, in which the problems, the layers of injustice, may just be too hard to face; too complex, too ubiquitous; too intractable. But can we keep looking away, tugging awkwardly at figurative strands of loose hair, biting the corner of a nail? Surely it’s not only the chasm between phenomenology and all things biological that needs to be bridged, but also the chasm between what it means and what it is to experience psychosis in such different worlds.