I haven’t blogged in a long time, thanks to a procrastination that my research in the mental health care system now allows me to label “apragmatism” (about which I am no longer “anosogosique”). Nonetheless, as twelve (12!) months of fieldwork in France comes to a close, I’ve been feeling an itch to write down some ideas, if only that in twelve more months, I can look back and have a time capsule of the ridiculous nonsense of which I was once convinced.
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“Je n’ai pas du tout envie d’être une autre personne… J’ai pas du tout envie d’être normale, hein… Je ne veux pas guérir ! Juste pas souffrir, et pas faire souffrir les autres…”
Debates about the politically-correct words to use are very American, as my interviewees in France frequently remind me (debates about orthographical marks, like the “accent circonflex”, on the other hand, are very French).. But I persist in asking, at the end of every interview, “So, what do you call the people you work with?”* Sometimes they reply, jokingly, “les fous!” or, for the more humanist, “I call them Monsieur so-and-so!” But even this appealing personalization is a dodge. There must be something that sets the people in contact with psychiatry apart from those who are not in contact, and there’s something telling in what we think that mysterious favor “X” actually is.
The intuitive choice for anyone working in the health system is, unsurprisingly, to call people “malades”—the ill—or “patients.” Sociologists don’t like this because it implies passive submission to medical authority, and because it makes a person’s primary identity the fact that they are sick. Yet, as far as I can tell, for many in the mental healthcare system, this is exactly the dream: to have a clear diagnosis, a specific treatment, and the exemption from blame and social responsibilities that comes with, say, any other condition that we can attribute to a bad roll of the genetic dice.
But the population I study does not get the “benefits” from being sick. Research shows that even as more Americans see schizophrenia as a biological “disease,” for example, their fears of those afflicted are actually growing. Even for the most gravely ill, doubts and insinuations about missing willpower and faulty choices are never far. The marginalization of psychiatric patients from “real” medicine—they are often the last to get physical health care—is mirrored by that of their caregivers—psychiatry receives a pitiful 6% of U.S. health spending. And for all the talk of advances in neuro-sciences, biological psychiatry has not yet brought us anti-psychotics that are more efficacious than those first discovered in the 1950s (even if their side-effects now suck slightly less).
If not patients, then what? For my informants here who have read about the “disability rights” of AIDS movement in the Anglo-Saxon world and learned how to pronounce “empowerment,” there’s another term: “usagers.” I like it more than its U.S. equivalent—“consumers” or “clients”—but they all capture the same ideal: that people in the mental health system are active partners in their own treatment.
I think this term is dishonest as a descriptor and illusory as an aspiration. Decades after the phrase “health democracy” started showing up in every government report in France, it is just one (admittedly, wonderful) woman who represents “usagers” in virtually all policy-making discussions. The leftist romance of discovering that everyone has some agency should not obscure the reality of dis-empowerment for erstwhile “usagers.” Some of that comes from society, yes, but another part of it is the nature of mental illness itself.
On the flip side, there is “trauma”—the notion that the “mentally ill” are best defined by the external factors of which they are victims. It’s a term I hear rarely in France, but often in the U.S., where trauma has become the catchall for the psychological consequences of the wrongs we face in the classroom, the street, the workplace, and the bedroom. It suggests that mental illness will largely fade as we tackle injustice writ large, an aspiration captured in the New York City Mental Health Roadmap, which nobly puts affordable housing and employment up front as public health measures.
It is, of course, very much true that the mentally ill are often victims of trauma. Media representations of depressed people as Ivy League graduates lacking “real problems” aside, depression tracks closely with poverty. To see that racism can literally tear the self apart, I only need to count the number of North and West Africans with schizophrenia on the intake list at the policy infirmary. But even when you see the astonishing portion of inmates, or foster kids, or homeless who have “severe mental illness,” the percentage rarely passes 50%. There is the normal sadness that comes from terrible circumstances, and there is the madness that comes—inexplicably—on top.
By comparison, there’s something about the label “personnes en souffrance psychique” that captured me the first time I heard it. It’s not that “suffering” is unique to mental illness: I need only to look at the migrant camps in the street on my bike home from my observations in the hospital to see that. What makes “souffrance psychique” specific, to me, is that it is suffering that is not tied to anything in particular, but turns inward on itself. It’s not a sort of suffering that can be traced clearly to an internal organ or an external wound, nor is it a kind of suffering that comes from “the struggle” for this and that end, a suffering that is experienced collectively. Mental illness is a widespread suffering that is experienced, by and large, alone.
Of course, you can read Viktor Frankl and learn that suffering is one of the ways we find meaning in our lives. You can turn to Andrew Solomon’s epic survey of depression and learn that, all told, he’s glad that he was depressed, because it made him who he is. But then again, those are the people who survived—or recovered enough to write a book. When I see the people in the services where I do my research, I realize that, sure, perhaps we should be thinking about empowering people, curing their chemical imbalances, rectifying structural inequalities. I’ve read enough Goffman and Foucault to know there’s a danger in adopting a shamelessly Catholic discourse dividing the world between suffers and savers, the assisted and the assisters.
But when I look honestly at the people in my own life, who’ve had every cognitive remediation technique and pharmaceutical in the book thrown at them, and who are still in the shit, I realize that, in the face of mental illness, we could all do with being humble.
I’m rather taken by the nurse who told me: “In the end, sometimes all we can do is just be with someone, in the hopes that that will soulager, un peu, la souffrance…”
* The sentence doesn’t end with a preposition in French, for the record.