A Conversation with Nev Jones

Editor’s Note: This conversation arose after Vice published an article about the “The Movement Against Psychiatry.” Sandy Steingard and Nev Jones, who have both contributed to Mad in America through blogs and/or continuing education courses, were both quoted in that article.

Sandy:

We “met” sometime in 2012. You sent me an email in response to several of the blogs I had written on Mad in America. You were critical of some things that were—and remain—important to me: Anatomy of an Epidemic and Open Dialogue. At the time, many people were critical of my blogs but I was struck immediately by several things. First of all, you were not critical of me; it was clear that you were interested in a serious engagement about ideas. Second, you were approaching all of this from a very different perspective. Third, I was struck by your keen intellect. This led to an ongoing conversation that continues to this day and has been extremely valuable in my own intellectual development. I am wondering if you would expound on any of these ideas, either as you raised them way back when or as you consider them today.

Nev:

In the case of both Anatomy and Open Dialogue, I’d say that my underlying concerns were (and to some extent still are) similar—but these are also concerns, to be fair, that have always had as much or more to do with the way Anatomy and OD have been taken up in popular discourse (versus their original articulations). This in turn has always raised questions in my mind about the author/founder versus the life of ideas once they circulate in the world, and what responsibility, if any, the former bear. But this is a complex topic, unresolved in my mind.

Meanwhile, my direct concerns were three-fold: first, oversimplification. Psychosis, for starters, is singularly heterogeneous, encompassing wildly different symptoms or experiences, levels of distress, and trajectories over time. We know there are demonstrable biological mechanisms at play in some cases (e.g., anti-NMDAR encephalitis) while voices can easily be induced through very short-term sleep deprivation and certainly also acute trauma. Social and structural factors—poverty, exclusion, deprivation—can of course also profoundly influence these experiences. And people react and respond very differently to various interventions, including antipsychotic drugs but also different psychological therapies (including cognitive remediation). And there is also a reality of very severe, enduring psychosis, the existence of which likely has little or nothing to do with exposure to antipsychotics or the lack thereof.

And overall, there’s so much we don’t know, so much we don’t understand. So, acknowledging heterogeneity, acknowledging a very high degree of uncertainty about just about everything, including ways of addressing long-term disability—I personally see this as the necessary starting point of any discussion. Instead, at least at the time, I think it was common to see Open Dialogue deployed as a quasi-magical bullet and means of (for some people literally) eliminating psychosis. And likewise, I felt that many people took up Anatomy as ostensible proof that antipsychotics were the primary cause of sustained or chronic psychosis (through supersensitization) and also that the case was more or less settled with respect to long-term iatrogenic harms.

A further concern is that, in both cases, a kind of “medication-centrism” seemed in play that in fact provided a potentially dangerous alibi for investments in social welfare, and programs to support those with long-term disability, as well as a kind of “invisibilization” of the fundamental role of poverty and structural marginalization (and the neoliberal economic policies responsible for them). Turning to Open Dialogue, for example, the idea that one could relatively neatly import an intervention from a rural, culturally homogeneous region of a high-income Nordic state with universal healthcare, robust social welfare systems, tuition free higher education, and so on, to parts of the US with deep poverty, entrenched structural racism, urban violence, etc., seemed like a fantasy.

Sandy:

It might be helpful for me to address why for me, as a psychiatrist, the questions Whitaker raised in Anatomy were important and why they have led to a shift in how I think about the drugs we prescribe.

Prior to reading Anatomy, I was already alarmed at the influence the pharmaceutical industry exerted on the practice of psychiatry (and, to be fair, the entire medical enterprise). When the newer antipsychotic drugs (APDs) were introduced in the 1990s, I was initially hopeful but then I observed leaders of my profession seemingly colluding with the pharmaceutical industry in playing down their harms and supporting the expansion of their use. Prior to the approval of the newer drugs, leading psychiatrists were promoting low-dose use of APDs in recognition of their many harmful effects. Over time, this message was lost and a more promiscuous approach to prescribing proliferated. I never thought that was supported by the evidence base and it upset me. But Anatomy raised another concern, namely that their long-term use might worsen rather than enhance long-term outcome. Up until then, I agreed that these drugs (albeit at low doses) should generally be continued long-term to prevent relapse. I found Anatomy well-referenced but I read it as a hypothesis—a call to further study, a question as to whether this issue was as settled as most psychiatrists believed it was. I did not find that I could easily dismiss these concerns and that led to my reviewing many of the articles cited, talking to colleagues, and deconstructing my view on the optimal use of these drugs.

But I agree that what I read as a call for further study, others read as a more definitive statement. I also think that you and I were talking to different groups. I was talking to psychiatrists and was frustrated by their general readiness to dismiss these ideas without further exploration and I gather you were talking to others who (in our opinion) may have been too eager to embrace them as definitive. We were both frustrated but at different kinds of reactions to the book. I have valued our exchanges because they helped me to think critically and expand my horizons for critical inquiry.

I agree with you that psychosis is so varied that it is difficult to offer one guide to treatment. It does not comport with my own observations that all psychosis can be explained entirely as occurring as a consequence of a person’s life experiences. Nor do I think that exposure to psychoactive drugs accounts for all psychosis. But I do think that over decades, social influences on the development of psychosis have been minimized and psychosocial interventions have tended to be focused on rehabilitation and psychoeducation. In a general way, the skills required to help people make sense of extreme states have atrophied among members of the professional community. Most clinicians and families are taught to think about psychosis in medical terms and I think this is the direct result of a limited narrative regarding our understanding of these kinds of experiences. I have also come to believe that minimizing relapse risk might be not be the highest priority for everyone. This has important and serious implications for psychiatric practice.

I agree that while I find Open Dialogue (OD) to be of great value, I feel caught sometime between those who think that either there is not enough evidence to support it yet too costly to fund studies that might provide such evidence, on the on hand, and those who idealize it and overstate our current knowledge base about it, on the other. I also have serious worries that if it is taken up without adequate attention to the way the drugs are used, the excellent outcomes reported in Western Lapland will not be replicated. But again, I became interested out of my curiosity and what I thought was an imperative to learn about other ways of working with people who were experiencing psychosis and it was that curiosity that also led me to Hearing Voices groups and Soteria.

Nev:

These comments are so helpful.  First, it occurs to me that while you read and absorbed Anatomy as a practicing clinical psychiatrist who up to that point operated under the assumption that antipsychotics were essential to the treatment of psychosis for most people, I was coming from a place of intimate awareness of how painful any decision about initiating or sustaining antipsychotics nearly always is—for those experiencing psychosis, for their families, for other loved ones and close friends. And part of that is because just as “schizophrenia is not an illness like any other,” psychiatric medications are not medications like any other. Because in this domain, we’re up against what philosophers have described as the “hard question of consciousness”—how the “mind” and “brain” are related. And because this question sometimes seems irresolvable, society tends to fall back on dualism. And not just mind versus brain but a whole series of linked constructs: “mind” entailing constructs like activity/agency, moral responsibility, psychological therapy or self-help; and “brain” connoting passivity, freedom from responsibility, moral exculpation. And thus to choose to take an antipsychotic, or be seen as taking an antipsychotic, at least in social circles that have strongly embraced a “psychological” perspective, that choice easily becomes tied up in a moralizing, even neoliberal discourse. Hence the phenomena of “pill shaming.” And then if we introduce the argument that antipsychotics not only signal weakness but are actually “causal” contributors to chronic psychosis, then we make a set of decisions that are already deeply painful even harder. And, critically, I therefore think the standard of evidence, the depth of understanding, needs to be very high before we unleash these kinds of ideas on the public. And I don’t think we’re there by any stretch. As I said before, there are so many gaps in our knowledge and we cannot say with any certainty that any given person is better off discontinuing versus continuing antipsychotics. Hence, of course, my particular concerns about Anatomy and the way it was being read.

Second, I suspect we’re in agreement regarding the importance of addressing poverty and structural racism (and of course one of the clearest manifestations of structural racism is the interlocking nature of poverty, class, and race), but I feel much less certain that addressing “medications” is actually a central piece of what we need to do. I’d almost call it more of an epiphenomenon. Addressing medicalization (or more precisely medical reductionism), on the other hand, is certainly critical. But here, I think, a huge part of the problem (and I’m largely following Helena Hansen’s argument in pathologizing poverty) is that contemporary welfare (workfare) policies operate in a way that first pushes people who are poor to claim disability, and then traps them within a disability-driven welfare system; similarly, the criminalization of substance use and (minor) drug trafficking, which have led to the highest rate of incarceration of any Western high-income country, and so disproportionately affected people of color, particularly black communities. In my mind, the importance of addressing these carceral and welfare policies are way higher on my list of priorities [than medication prescribing practices].

Sandy:

Since the idea of this conversation came about as a result of the Shayla Love Vice article, I also wanted to circle back to that. We were both interviewed and while I appreciated the breadth of the article, I found it hard to understand the sequence or overarching theme of the piece. It may be that I am too immersed in this topic but it troubled me that there appeared to be an implied link between Scientology and critical perspectives. Also, I greatly value the work of Whitaker and MIA and I thought they were both treated unfairly. Your comments about Anatomy were critical; you were quoted as saying that Anatomy is “just packed with misinterpreted, misunderstood studies that Whitaker uses to make claims that I think are demonstrably untrue.” In the context of what you wrote above, is there anything you would want to add here?

Nev:

Yes, regarding the Vice article, I think my general reaction to that piece (and most mental health journalism I read) was, “Ah, this is why I’m a researcher and not a journalist.” In other words, I think the slow, rigorous, peer-review process involved in academic publications is really helpful—we have to review the literature, demonstrate understanding, and describe our methods and approach in a transparent way. Journalism, on the other hand, has none of the safeguards of qualitative research—there’s rarely anonymity, nothing like formal “informed consent”—and the goal most often seems to write a story that appeals to a popular audience, or that the author and/or editor imagines will. Thus “the story” becomes the focus rather than a careful, critical attempt to articulate themes (as well as thematic tensions) within a given set of interviews.

So much of my actual conversation with Shayla focused on the consequences of political polarization (about medications, diagnosis, etc.) and the need to get beyond this and the challenges of doing justice to all sides; and this perspective is largely absent. Instead, a few sentences, stripped of their original context, are deployed in ways that seem less about doing justice to my perspective and more about carrying a certain narrative argument that the journalist wanted to make.

As I’ve already mentioned, I do disagree with various arguments embedded in Anatomy, or at least find many of the arguments over-stated, or perhaps, as I’ve explained earlier, at least start down a path that ultimately de-centers issues of fundamental importance to improving the outcomes of people with psychosis/schizophrenia in the US. But then it’s more when I think of the way that some people have read (and interpreted) Anatomy—i.e. as definitive proof rather than a hypothesis-generating text—that I’ve tended to feel the most frustrated and concerned.

Regardless, while I could certainly criticize the way the excerpted quote you mention is deployed, and question what it was Shayla Love thought this would achieve, I obviously also bear responsibility for saying it. And use of such strong language—”fighting words” even—actually violates my own principles of engagement and I would say in retrospect that it reflects frustration with threads within popular discourse that it’s unfair to ascribe(?) so strongly to Anatomy. And like Awais, my concerns with Mad in America, when I have them, are squarely with some of the blogs, not the scientific team, which does fantastic work and includes a number of very talented doctoral students. So all in all, it’s unfortunate the way this played out, which doesn’t seem to have contributed to greater dialogue—except maybe as the impetus for this conversation…?

On the topic of “public uptake,” however, I’m really interested in your thoughts—for example, with respect to “medication-centrism.” What should our priorities be, from your perspective, and what are the risks of centering or prioritizing the topic of medications?

Sandy:

Right now, I do not know of any way to talk about reform of the mental health care system without addressing racism and the profound disparities we have in the US in outcomes among different groups. Addressing poverty is a part of that but we need to address structural racism. You are among the many who have taught me of the value of including those with lived experience into every part of our system—from working directly with individuals to developing policies, to setting research agendas to conducting research. Antiracism would also mean that BiPOC are also included, not in a tokenistic way but in all aspects of the system of care. I admit that I am worried that when we talk about access to care and problems of incarceration and poverty, if we do not also talk about the highly medicalized narrative that has taken hold in the US (and elsewhere), we might do as much harm as good. So I do not consider this an either/or proposition but a both/and. If, in my own writing, I focus on drugs, it is only because that is where I have some expertise. When it comes to dismantling hierarchical and racist structures, I support it but I am a student, not a leader.

I have two final questions for you. The first is what your priorities are for the future. The second is how MIA might be helpful in advancing these priorities.

Nev:  

When I was working in California, one of my projects investigated the impact of cumulative structural disadvantage (including structural racism, exposure to community violence, incarceration of family members during childhood, migration in adversity, individual trauma, and so on) on the outcomes of young people treated in specialized early psychosis programs. I looked at both engagement with services and outcomes. And the data I collected suggested that any effect of level of symptoms (impairment/distress) disappeared when we added cumulative disadvantage to our models. So, it seems to me, if the goal is really to provide better support to people, and to change outcomes, it is essential that we address these underlying conditions and the way they not only affect risk but also ongoing experiences. (For example, imagine trying to “manage” paranoia when you’re living in a neighborhood in which there’s a factually huge risk of getting shot just walking to the bus stop. Back when I was in Chicago, I literally heard this from research participants on the South Side, and in a couple of cases their voices actually played the role of warning them when it was unsafe to go out.) Addressing education and employment—access, affordability, and support—are also fundamental.

My more “privileged” perspective on change is a different form of de-pathologization: beginning to see the experiences that get labeled as psychosis as rich, complicated, meaning-laden, and fundamentally bound up with identity and selfhood..and thus centering meaning-making in clinical contexts, rather than reductionistic forms of therapy or intervention that primarily aim to contain, ameliorate, or enable “self-management.” I also feel that these experiences need to be brought back into the fold of human experience and culture.

And finally, certainly seats at the decision-making table for those with personal experience of significant psychiatric disabilities and intersecting experiences such as homelessness, living in subsidized housing, disability-based discrimination, and poverty. And of course, ensuring racial/ethnic/cultural minority representation and leadership within this mix. And I think we need to make sure that we are not excluding perspectives that we disagree with. In fact, they’re arguably the most important and represent the places where we have the most to learn.

How can MIA contribute? Obviously there’s a very diverse mix of voices represented in current blogs, and the science team does really great work. But perhaps an even more explicit focus on user/survivor-led research? And more efforts to visibilize major policy issues (such as healthcare and welfare reform, underlying drivers of structural racism, macro policy issues more generally)? But also I would say explicit efforts to bring “critics” into the conversation (more university-based psychiatrists and researchers, for example)—and not just the choir, but rather, as I said above, creating dialogue among those with significant differences of perspective but doing so in ways that are generative rather than competitive. Not a debate but an opportunity for deeper (collective) reflection?

But back atcha. What is your vision?

Sandy:

As someone who is critical, I often get asked about my vision and I struggle with an answer. One idea that I have advanced is the merger of Joanna Moncrieff’s drug-centered approach to psychopharmacotherapy and need-adapted treatment (NAT). I have written about this elsewhere, but in brief, this offers a way to reduce the reliance on a faulty diagnostic system and offer the space and time to discuss with individuals and families these extremely complex matters that you have raised. Psychiatric practice has evolved within the medical system where one—and this is anyone who bills an insurance system!—is obligated to arrive at a diagnosis and treatment plan quickly. Even if one does not adhere to an essentialist notion of mental disorder, the processes of assigning diagnoses tends to reify them in the minds of clinicians, individuals, and families. You write about agency and I have come to believe that we need to try to maximize a person’s sense of agency. You have also addressed how difficult it is for humans to tolerate uncertainty. NAT (Open Dialogue is the most widely known type of NAT) values uncertainty but, as important, it offers a place to discuss it and manage the difficulty of not knowing. It is less hierarchical and will encourage clinicians to tilt towards humility in their work. With everything we do not know, I believe the best clinicians are the ones who embrace humility.

Beyond that, I think people need to listen to people like you. I am most excited about the work coming out of groups who have been—in varying degrees and ways—marginalized: people with lived experience, people of color (including professionals). This is likely to be published after I have retired from clinical work and I think the future is with you and not me. In that spirit, let me say that I remember when you first emailed me. I hope I am not too much of a fangirl by saying I have kept those emails and still learn from them. In the spirit of everything I have just written, I offer you the final word.

Nev:

Okay, last word! It’s going to be “dialogue”—because I think that greater user/survivor leadership and influence are absolutely critical, in part because of such a long history of exclusion and marginalization. But at the end of the day, we all need to join together to enact deeper social change.