Robert Whitaker extended one of his core arguments from Anatomy of an Epidemic1 in a blog post last week. His argument revolves around the claim that psychiatric drugs are the principal cause of increasing psychiatric disability, as measured by U.S. social security disability claims. But does this really explain the rise in recipients of these SSI & SSDI benefits?
I’ve followed Robert Whitaker’s work since he first wrote about the pharmaceutical industry in the Boston Globe. There’s no doubt that his writing has opened up important discussions about psychiatric medications. At the same time, my own lived experience — and reading of the literature — have led me to different conclusions on core aspects of these issues, including the putatively causal role of medication in increasing disability
In what follows, I chart an alternative perspective on psychosocial disability that calls for the decentering of psychiatric drugs in both public discourse and advocacy. Concretely, I suggest refocusing reform efforts along two axes:
- The identification of areas where interests and perspectives align among advocacy groups that may otherwise strongly disagree about the role of psychiatric treatment in recovery.
- The intersections of psychosocial disability and poverty, the criminal justice system, and broader socioeconomic and health disparities, particularly among marginalized racial/ethnic/indigenous and/or sociopolitical minority communities.
In this discussion of disability I intentionally leave aside questions of whether the experiences classified in the DSM52 are most usefully characterized as medical problems, even if they have a biological basis. In my view, the ‘body’ and the ‘mind’ are mutually entangled, and so of course there are physiological processes involved in all human experiences, as well as considerable variability among bodies. The extent to which a biomedical approach is useful or resonant for any given person is contingent on the particularity of that person within their sociocultural surround. How persons negotiate the meaning(s) of their (our) own experience in relation to different explanatory models is highly contextually specific.3 For instance, using medication does not necessarily imply agreement with a biomedical model,4 just as the efficacy of yoga or mindfulness may be characterized in more biological, rather than spiritual terms depending on context.5 I’d like to see us shift our attention from debates about medications, loosening up polarizations that hamper our ability to work effectively on these issues, towards careful thinking and contextual grounding in fields such as mad studies,6 survivor research,7 medical anthropology,8 the medical humanities,9 and social10 and cultural psychiatry.11
Leading proponents of psychiatric treatment like iconoclastic figure E. Fuller Torrey — who said Robert Whitaker’s writing on big pharma has been “right on target” — agree that overdiagnosis and overprescription is a serious problem, especially among children. That psychiatric diagnoses do not index discreet disease processes with clearly identified etiologies has also been acknowledged by leading proponents of otherwise mainstream psychiatric treatment like Thomas Insel (Director of the National Institute of Mental Health).12 This is also clearly inscribed in the DSM5 which acknowledges that current psychiatric categories do not map onto discrete disease processes with homogenous “biomarkers,” that knowledge is therefore provisional, and the state of the science still limited.2 In this post, I have therefore opted to sidestep issues that are already relatively well-accepted across academic and activist contexts (such as the scientific and philosophical limitations of psychiatry).
On the other hand, I am deeply concerned about the degree to which the dogmatic anti-psychiatry positions of some are being leveraged at the federal level in favor of The Helping Families in Mental Health Crisis Act. So, even while advocating an emphasis on structurally and socioculturaly informed perspectives and psychosocial approaches, I also feel a duty to make the following statement explicit:
My decades of experience living with “severe mental illness” and disability myself, alongside a family member with even more intense disability, my years of formal academic study and research, critically reading the literature and engaging with a wide range of other persons with lived experiences all tell me there is no question that these experiences are both real and heterogeneous, and that medication is helpful for many people. The question is: for whom, for how long, and how best to weigh the benefits against the risks. My larger point in this post, however, is that there would be a lot more space to develop psychosocial approaches and address broader systemic issues if we decentered medication in these discussions, while also challenging those who would presume to speak for “us” by characterizing our experiences as not real.
The Sociopolitical Contexts of Psychiatric Disability
That there is a marked increase in reliance on SSI & SSDI and that psychiatric disabilities account for a large portion of this increase is uncontroversial.13 But is psychiatric medication use the primary driver of this increase? I don’t think the evidence supports this assertion.
Here I provide a brief summary of two recent pieces that address this question in interesting ways — one journalistic and one academic — and that provide nuanced positions, well-grounded in actual data.
On This American Life
Chana Joffe-Walt tackled these questions in a 2013 This American Life piece, Unfit for Work: The Startling Rise of Disability in America.14 The points Joffe-Walt raises at the very least complicate the argument Robert Whitaker put forward in his recent blog post and in Anatomy of an Epidemic.1 Whitaker rightly notes the alarming rise of psychiatric disability over the last several decades. But whereas Whitaker emphasizes the relationship between increases in SSI/SSDI and psychiatric drug use, Joffe-Walt compares the changes across different disability categories over time, and foregrounds their relationship with socioeconomic factors.
It turns out that while psychiatric conditions account for a large portion of the increase in SSI/SSDI claims, they do not account for the largest increase. The largest increase is for conditions described as “back pain and other musculoskeletal problems.” Joffe-Walt notes that “The health problems where there is most latitude for judgment — back pain, mental illness — are among the fastest growing causes of disability.” That both of these categories follow the same trajectory of increase should give pause to anyone claiming psychiatric drugs are the principal cause of rising disability rates. One obvious route of exploration is determining whether increases in SSI/SSDI claims for back pain and mental disorders share any common causal factors. This is the approach Joffe-Walt takes.
Joffe-Walt describes how the rate of SSI/SSDI claims have fluctuated with broader socioeconomic trends like changes in the availability of fair wage jobs that don’t require specialized education, the rise and fall of the unemployment rate, and cuts to other social welfare programs.
Joffe-Walt spoke with a physician in an economically depressed area about his assessment of patients in terms of disability claims:
“‘We talk about the pain and what it’s like,’ he says. ‘I always ask them, what grade did you finish?’
“‘What grade did you finish,’ of course, is not a medical question. But Dr. Timberlake believes he needs this information in disability cases because people who have only a high school education aren’t going to be able to get a sit-down job.
“Dr. Timberlake is making a judgment call that if you have a particular back problem and a college degree, you’re not disabled. Without the degree, you are.”
I highly recommend exploring Joffe Walt’s piece, with particular attention to the graphs and figures she provides. How is this portrait different from that painted in Anatomy of an Epidemic? Let’s look to ethnographic work to fill the picture in a bit more.
In The Journal of Social Science and Medicine
Now I turn to a 2014 article by psychiatrist and anthropologist Helena Hansen and colleagues, Pathologizing Poverty: New Forms of Diagnosis, Disability, and Structural Stigma Under Welfare Reform.15 In this article, Hansen draws from ethnographic fieldwork to map a set of complex relations involving “structural violence” as they play out in the lives of her case study participants in a process she terms “the pathologization of poverty.”
Hansen and colleagues’ paper deepens and further complicates the arguments of both Whitaker and Joffe-Walt.
Like Joffe-Walt, Hansen and colleagues’ analysis foregrounds how socioeconomic factors and changes in policy have shifted over time, and their relationship to increases in SSI/SSDI. But Hansen goes into much more depth in terms of the intersection of disability with gender, race and class. One point that strikes me as particularly urgent is that
“Mass incarceration has led to the systematic exclusion of crucial data on 8–10 million (mostly minority) men who have been imprisoned over the last 35 years, obscuring the true extent of this nation’s worsening health and social outcomes among the poor.”
Like Whitaker, Hansen and colleagues note that iatrogenic effects of psychiatric medications are one dangerous consequence for some. But whereas Whitaker concludes that medications are a primary cause of the increase in SSI/SSDI, Hansen characterizes the relationship as only one dynamic in a broader network of social marginalization in which “social structures, policies, and institutions devalue targeted groups of non-normative people or discipline them in coercive and subtly subjectivity-imposing ways.”
On my reading, this analysis suggests that the relationship between psychiatric drugs and disability is both highly ambiguous and heterogeneous. Fundamentally, however, relationships between disability, medication use and welfare system dependence are driven by a far more complex set of socioeconomic forces.
Further, stigma too is a complex and context-dependent phenomenon that is at least, if not more, implicated in ‘disablement’ and requires careful attention. Another consequence of overemphasizing psychiatric drugs, is that we don’t attend to the identity work16 and moral negotiation17 — which can have both helpful and/or harmful effects — that persons take up in relation to various discourses of distress and disorder. The sense of lowered expectations and foreclosure of a richer sense of oneself all too often comes with the experience of psychiatric diagnoses which carry widespread negative associations in broader communities.18,19 At the same time, for others, diagnosis provides a culturally acceptable way of understanding one’s struggles as “real” and nameable.20
Meanwhile, the intensity with which many family advocacy groups militate against psychosocial conceptualizations of psychosis arises from a historical context in which mothers were ‘blamed’ for the intense suffering of their children. It is worth noting that these often oversimplified traumatogenic theories belonged to the mainstream of psychiatry in the not-so-distant past.21 This is an example of what I mean by “moral negotiation.” That is, fierce debates about “brain disease” or the importance of medications are often laden with additional forces that are obscured if we focus only on surface discussions of somatic medication effects.
In addition to charting structural causes of increasing disability rates, another crucial takeaway from these analyses is that context and social identity factors (e.g race, class, gender) profoundly shape the ways in which distress, psychiatric treatment, social marginalization, and disability are experienced. Taking myself as an example; though I experienced foster care, the juvenile justice system, and early-onset psychosis, as a white male my “lived experience” was quite different and almost certainly far easier than it would have been were I a black man living those experiences. It’s quite likely I would be in prison or dead, and not a PhD student writing this blog. This has implications for knowledge claims ‘from’ lived experience, and also suggests where the priorities need to be in terms of leadership development and cross-movement organizing in mental health advocacy. There are some bright spots both in the U.S., and abroad, but clearly much more needs to be done.
Some Ways Forward
Discussions of mental health policy reform should take the broader context I’ve outlined here into account. I don’t think it’s helpful (or accurate) to center debate on the supposed nonexistence of more enduring psychiatric disabilities, or take too one-sided a perspective on psychiatric medications. The effect of this dynamic was evident in a February 12th congressional hearing in which legislators were so busy responding to SAMSHA funding of groups with these positions that they seemed scarcely able to hear witness testimony regarding the importance of a systemic approach addressing such issues as poverty, housing or a contextually grounded public health approach.
Whatever one believes about medications and diagnosis, there is a lot more to psychosocial disability than either of these things address. Anthropologist Kim Hopper has laid out a detailed conceptualization of social recovery that provides an excellent theoretical model for just such an approach.22 Many “evidence based” psychosocial approaches center or include career development and living wage employment, including coordinated care for early psychosis, supported employment,23 and supported education.
Many people on SSI/SSDI are fearful of losing the precarious livelihood their benefits provide, and it is well established that these programs have built in disincentives to exploring and pursuing meaningful work; in turn a barrier to the social, psychological and economic benefits of fair wage employment.24 Social Security Disability work incentive programs are underutilized and provide supports for folks who are dependent on disability but who would like to explore education or meaningful work.25 The process can be complicated and intimidating, but supporting folks who want to give it a shot through this process is a place where peer support can be utilized.
It should be clear that broad federal legislation on mental health policy that doesn’t substantially center the socioeconomic factors, like the Helping Families in Mental Health Crisis Act, is way off the mark. Those who support the expansion of forced treatment while not engaging data-driven discussions of how forced treatment intersects with the issues discussed above, or while simultaneously opposing social welfare, universal health care, and educational opportunities, cannot in my view substantively claim to be supporting the interests of “the mentally ill” — “severe,” or otherwise.
Likewise, advocates who agitate against all psychiatric treatment, or who deny that psychosocial disability is real, rather than meaningfully addressing the issues highlighted here make a similar error. We can do better.
- Whitaker, R. (2011). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. Broadway.
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders, (DSM-5®). American Psychiatric Pub.
- Kleinman, A. (2007). On illness meanings and clinical interpretation. Cultural formulation: a reader for psychiatric diagnosis, 69.
- McNamara, J. (2013). Inbetweenland. Deviant Type Press.
- Ross, A., & Thomas, S. (2010). The health benefits of yoga and exercise: a review of comparison studies. The journal of alternative and complementary medicine, 16(1), 3-12.
- LeFrançois, B. A., Menzies, R., & Reaume, G. (Eds.). (2013). Mad matters: A critical reader in Canadian mad studies. Canadian Scholars’ Press.
- Fabris, E. (2011). Tranquil prisons: Chemical incarceration under community treatment orders. University of Toronto Press.
- Martin, E. (2007). Bipolar expeditions: Mania and depression in American culture. Princeton University Press.
- Woods, A. (2014). 6. Beyond the Wounded Storyteller: rethinking narrativity, illness, and embodied self experience. Health, Illness and Disease: Philosophical Essays, 113.
- Metzl, J. (2009). The protest psychosis: How schizophrenia became a black disease. Boston, MA: Beacon Press.
- Kirmayer, L. J. (2013). Embracing uncertainty as a path to competence: Cultural safety, empathy, and alterity in clinical training. Culture, Medicine, and Psychiatry, 37(2), 365-372.
- Insel, T. R. (2014). The NIMH research domain criteria (RDoC) project: precision medicine for psychiatry. American Journal of Psychiatry, 171(4), 395-397.
- Joffe-Walt, C. (2013). Unfit for Work: the startling rise of disability in America. National Public Radio
- Hansen, H., Bourgois, P., & Drucker, E. (2014). Pathologizing poverty: New forms of diagnosis, disability, and structural stigma under welfare reform. Social Science & Medicine, 103, 76-83.
- Larsen, J. A. (2004). Finding meaning in first episode psychosis: Experience, agency, and the cultural repertoire. Medical anthropology quarterly, 18(4), 447-471.
- Callard, F., Rose, D., Hanif, E. L., Quigley, J., Greenwood, K., & Wykes, T. (2012). Holding blame at bay?‘Gene talk’in family members’ accounts of schizophrenia aetiology. BioSocieties, 7(3), 273-293.
- Schulze, B., & Angermeyer, M. C. (2003). Subjective experiences of stigma. A focus group study of schizophrenic patients, their relatives and mental health professionals. Social science & medicine, 56(2), 299-312.
- Link, B. G., & Phelan, J. C. (2013). Labeling and stigma. In Handbook of the sociology of mental health (pp. 525-541). Springer Netherlands.
- Kirmayer, L. J. (2005). Culture, context and experience in psychiatric diagnosis. Psychopathology.
- Hartwell, C. E. (1996). The schizophrenogenic mother concept in American psychiatry. Psychiatry, 59(3), 274-297.
- Hopper, K. (2007). Rethinking social recovery in schizophrenia: what a capabilities approach might offer. Social Science & Medicine, 65(5), 868-879.
- Bond, G. R., Becker, D. R., Drake, R. E., Rapp, C. A., Meisler, N., Lehman, A. F., … & Blyler, C. R. (2014). Implementing Supported Employment as an Evidence-Based Practice.
- Rosenheck, R., Leslie, D., Keefe, R., McEvoy, J., Swartz, M., Perkins, D., … & Lieberman, J. (2014). Barriers to employment for people with schizophrenia.
- Drake, R. E., Frey, W., Bond, G. R., Goldman, H. H., Salkever, D., Miller, A., … & Milfort, R. (2014). Assisting Social Security Disability Insurance beneficiaries with schizophrenia, bipolar disorder, or major depression in returning to work.
* * * * *