On Schizophrenia, Violence, And The Problem With Shallow Allyship

You can’t help vulnerable people without being frank about the challenges they face

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In February, the journal JAMA Psychiatry published an article called “Association of Schizophrenia Spectrum Disorders and Violence Perpetration in Adults and Adolescents From 15 Countries: A Systematic Review and Meta-analysis,” by the University of Oxford psychiatry researchers Daniel Whiting, John R. Geddes, and Seena Fazel, and the University of Limerick psychiatry researcher Gautam Gulati.

A meta-analysis is an attempt to sum up many studies on a given subject and average their results, which, in theory, can generate better and truer findings than individual studies. Whiting and his colleagues drew on “24 studies of violence perpetration outcomes in 15 countries over 4 decades” that, in total, included more than 51,000 study subjects with schizophrenia spectrum disorders, or SSDs. That category includes “schizophrenia, other psychotic disorders, and schizotypal (personality) disorder,” according to the DSM-5. 

Whiting and his colleagues found that men with SSDs were about 4.5 times more likely than those without them to commit acts of violence, and women with these disorders were about 10.2 times more likely to do so (women have a much lower baseline rate of violence perpetration). That said, the overall risk level was relatively low, as “less than 1 in 20 in women with schizophrenia spectrum disorders and less than 1 in 4 in men over a 35-year period” committed acts of violence. When the researchers restricted their analysis to the highest-quality studies, it didn’t affect the overall results much.

The researchers were careful to note that there are negative stereotypes about people with SSDs that tend to exaggerate the magnitude of the link between these conditions and violence. In fact, the paper starts with this paragraph:

Schizophrenia spectrum disorders are associated with a range of adverse outcomes. These include suicide, premature mortality, experiencing violence and contact with the criminal justice system, and deficits across broader social domains. Perpetration of interpersonal violence is also associated with these diagnoses, an outcome with considerable implications for individuals, families, caregivers, those who experience interpersonal violence, and public services. Examining such associations poses particular challenges. Public perceptions around dangerousness in mental illness can contribute to stigma, and a focus on violence risk may inadvertently increase this. The contribution of mental illness to violent crime is often overstated, such as in media reports on mass shootings, which can bias public perceptions, and such issues have been integral to the appraisal of epidemiological evidence. However, failure to acknowledge associations with violence perpetration in turn risks leaving clinical needs unmet in psychiatric services. An accurate and balanced understanding of the nuanced association between mental illness and violence perpetration, development of effective prevention, and balanced communication and contextualization of research evidence may be one approach to reducing stigma. [citations omitted]

But despite having laid out their findings in a careful, context-rich way, the paper launched some controversy. The researchers Paolo Fusar-Poli and Vikram Patel, alongside the activist Charlene Sunkel, responded with a letter that began:

We believe the methods and their interpretations are flawed, and their uncritical dissemination risks fueling misunderstandings and stigmatization, potentially leading to violence against people with psychosis, as feared by our coauthor with lived experience of psychosis.

That’s a pretty big claim, that the paper could “lead[] to violence against people with psychosis[.]” The authors also don’t really explain why it matters that one of them (Sunkel) has “lived experience of psychosis,” but I guess that’s beside the point. Another research team argued in their own letter that “Overstating the potential risk of violence in patients with schizophrenia spectrum disorder may result in persistent stigmatization.”

Now, to be fair, both groups of letter writers also leveled some more substantive statistical critiques of the Whiting paper. But it really does seem like the critics are more upset about the finding itself — that is, the strong suggestion, published in an important journal, of a significant link between SSDs and violence — than about the methodological particulars. I’ve seen this a lot in academic disputes: You’re mad that someone found X, because X is something that you deem politically problematic, so you reverse engineer a reason why people shouldn’t take the finding seriously. Of course, this isn’t true of every critique (I wrote a whole book about findings that are, in fact, shoddy), but when it comes to politically sensitive areas, it’s a very common tactic.

And I do think that’s what’s going on here. In Whiting’s and his colleagues’ response to their critics, they note that there’s a large body of evidence all pointing in the same direction on this question, and that some of the specific criticisms don’t even apply to all the studies in the meta-analysis. They also note that “plausible mechanisms explaining associations between psychosis and violence have been proposed in richly phenotyped cohorts that have found psychotic symptoms, including persecutory delusions, to be associated with violence.” In other words, there isn’t much mystery why some individuals who experience delusions might lash out violently as a result.

At the end of their response, the Whiting group argues:

There are 2 broad approaches to interpreting the available evidence. One is to take a position of denial, which some simplistically assume aligns with stigma reduction. The alternative, which we prefer, is to take full account of the evidence. We believe that this approach leads to improved understanding and, hence, to better public mental health. This approach acknowledges the association, contextualizes it according to relative and absolute risks, and outlines approaches to prevention.

I think this nicely captures what’s going on here and in a lot of areas involving “stigma” and “pathologization.” A crimped and counterproductive understanding of allyship has set in.

The evidence suggests that someone with schizophrenia — all else being equal, and in addition to all the other awful adversity they must contend with — should be concerned that, while in the midst of a delusion, they might harm someone else. This would be bad for obvious reasons: On top of feeling subsequent guilt over the act, they could find themselves in prison, possibly for years in the case of a serious assault or murder.

One concept of allyship with people who have schizophrenia — the dominant one, I’d argue — holds that even to mention this link is offensive and harmful; by doing so, we are contributing to “stigma,” which is a major driving force of harm against marginalized people. There is a stereotype of the violent, out-of-control schizophrenic person, and this discourse contributes to it — it could even “lead[] to violence against people with psychosis[.]”

The problem with this version of allyship is that a fairly abstract concern — talking about the problem will increase stigma, which will in turn harm schizophrenic people — crowds out a very real one: the harm that can befall schizophrenic people if their delusions get out of control. If you are a person with schizophrenia, you face a lot of day-to-day challenges. I suppose one of them is the way Society At Large discusses your condition, how it’s portrayed in film and on TV, and so on. But you probably have many more immediate concerns, including making sure you have access to medication, a decent support network when you’re not doing well, and so on. It’s hard to think of an individual challenge more daunting than living with schizophrenia, and one aspect of it is, yes, ensuring your own behavior doesn’t cause harm to yourself or others.

While I was working on this piece, Freddie deBoer published a really great, searing essay about “The Gentrification of Disability.” He focuses on autism, and his basic argument is that disability activism is disproportionately influenced by relatively well-off, highly functioning people whose experiences aren’t representative. As a result, there’s a great deal of focus on what’s good or nice or adaptive about autism spectrum disorder (ASD, or the politer and more inspiring term “neurodiversity,” though that one is a bit more of a catchall for certain other conditions too), and less focus on the profound challenges facing those with severer types of the condition, not to mention their families.

DeBoer writes:

When I was in my late 20s (early 2007 to mid 2009, maybe) I worked for the local public school district in my hometown. For the bulk of my time there I was in a special program for kids with severe emotional disturbance, which I’ve written about once or twice. But I worked in a number of capacities in those years, and for a little while I helped out in a conventional special ed classroom for the middle school. I guess you’d say I was a paraprofessional, just extra coverage when they needed it.

In that class there were two boys who had autism which resulted in severe academic and social and communicative impairments. One of them was completely nonverbal and had been his entire life. As I understood it, he had never been capable of speaking or reading, could not dress himself, wore sanitary garments, could not go to the bathroom without assistance. He would occasionally screech very loudly, without clear cause. I believe these days he would be referred to as having Level Three autism, as defined by the DSM. He needed a lot of help, and though he was unable to complete what might conventionally be called academic work the school provided him with structure, support, and time during which his mother didn’t have to care for him. I met her on several occasions when she came to pick him up after school. She would sometimes talk about the difficulties of raising a disabled child in language that would be frowned on today, but I admired how frank and honest she was.

DeBoer’s argument is that the discourse surrounding autism is now dominated by these wonderfully inspiring stories of The Surprising Benefits Of Being Neurodiverse (or whatever). The problem isn’t that such stories are false — there are people with milder forms of ASD who, in fact, seem to be endowed with profound artistic or mathematical gifts — but rather, again, a certain form of crowding out. Because of the ever-stifling threat of “stigma,” you can barely talk about the harsher reality of severer forms of ASD — you can barely talk about the fact that it is, in fact, a disorder. For many (not all) people with ASD — and their loved ones — it’s an unwelcome reality that makes many aspects of daily life more difficult.

It’s shallow allyship to pretend that there’s no link between schizophrenia and violence. It’s also shallow allyship to pretend away just how negative it can be to have ASD or other disabilities — to focus solely on the idea that they are an interesting personality quirk or even a gift. I think the term shallow is apt because these sorts of arguments, even if they reflect deeply felt sentiments, are fundamentally for show — the key here is to recite the right buzzwords about the people with these conditions rather than to address the unvarnished reality of their daily lives.

I do understand where this comes from: For a long time, in many places, individuals with schizophrenia or severe autism were treated in an incredibly inhumane manner. So some people develop the idea that if we talk about these things in the wrong way, the march of progress will slow or stop or reverse, and we’ll return to the cruelest forms of institutionalization from the past.

It won’t surprise you to find out that I think this is a blinkered understanding of how everything works. For one thing, the idea that if we don’t talk about these facts openly, they’ll somehow go unobserved, is bizarre. Anyone who has spent any significant time in a major city has, at one point or another, been menaced by someone who appears to be in the grips of a mental health crisis. It’s a sad fact that some people don’t get the help they need, or are beyond help altogether. You can ignore the problem away all you want — or accuse people of being rude for pointing it out — but it’s still a problem.

But more importantly, I think frankness, empathy, and effective advocacy go hand-in-hand-in-hand. The problem with unwell people wandering the streets, accosting passersby, isn’t just that they could hurt someone else — it’s that their behavior could lead to them being hurt, whether by one of the people they accost, the police, or someone else. It’s almost impossible to talk about their lives and how to help them in a rich, meaningful way if the shadow of “stigma” cows us into euphemism or the selective shaving-off of unseemly details. Similarly, and along the lines of what deBoer is saying, imagine telling the mother of a child with severe ASD — a kid who will never, ever be able to look after themselves, and who has trouble with basic dress and toilet issues despite being 12 years old — that they should see their child’s condition as a gift, that their kid is no different or worse from any of the other so-called “normal” kids. This mom would probably kill you, and if I were on the jury I’d vote to acquit.

Unfortunately, there are vast swaths of modern social justice discourse that operate 80,000 feet above most of the real-world concerns of the affected populations. I’ve already written too much about police abolition and defunding to warrant a full rehash of that subject, but it’s another great example: It’s shallow allyship to look at a violence-ridden neighborhood whose residents have no desire for fewer police and to say, “What this neighborhood needs is fewer police.” It isn’t treating the individuals affected as fully formed, flesh-and-blood human beings whose concerns and values might not mirror those of the activists, academics, and journalists who have the platform and privilege to opine on these subjects in prominent journals and media outlets.

I don’t have any great ideas about how to fight back against this type of shallow allyship. After all, this is mostly a matter of class, and the people with the loudest megaphones are, on average, going to come from certain backgrounds, because that’s how you attain those megaphones in the first place (I should know). But I do think it’s important, as futile as it seems, to endlessly hammer home the point that those claiming to speak on behalf of “marginalized people” are often doing so in a strikingly superficial and counterproductive manner.

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Questions? Comments? Issue gentrification? I’m at singalminded@gmail.com or on Twitter at @jessesingal. Image: David Wall/Getty.