Nightmares in Online Research Ethics, Part Two

In the previous post, I described an ugly knot of a study from 2017 that centers on how ordinary people, who self-identify with a bipolar diagnosis, narrate their identity and experience through personal blogs. In eight short pages, the authors manage to:

1. Deny agency to research subjects with bipolar disorder
2. Impose a narrative on every mentally ill person (we are not all the same)
3. Present an argument that impacts access to care in a very bad and unethical way
4. Claim to know about mental illness from the outside
5. Prioritize their research over the humanity of their subjects and others with this diagnosis

Deploying a value-laden methodology, the authors mine, quote, and re-publish sensitive information from personal blogs written by members of a community of which they are not active participants, without informed consent or permission from the bloggers, and for which they do not provide deep context. They consistently choose to ignore the truth from their subjects who write about their life in intelligent, accessible ways that are also brave and resilient. 

What makes this study egregious, thought, is how the authors claim expertise on bipolar disorder identity by reducing a complex diagnosis and illness experience to a trivial performance or commodity. For the authors, these bloggers are not just wrong. They lack legitimate grievances. 

The authors advance simplistic, moralizing, and claims on their subjects’ motives and character that threaten their reputations, access to support, and increase their risk of harm. Their colossally superficial analysis presents them as weak and amoral people at best; deceptive drug-seeking malingerers at worst. 

Rather, the authors gesture toward a mind-bogglingly anodyne debasement of the medical model brought on by mainstream psychiatry’s (increasingly transparent) collusion with “big pharma.” 

What’s the point of this?

When I first became aware of this research via twitter, I was horrified. The ethical and moral void, yep. But it would take another month before I read the study for myself, followed by (at least) another month of thinking, reading, tweeting, and writing before I could begin to articulate the depths of my outrage. 

Through it all, I’ve been consistently plagued by the same set of questions: Why this study was conducted? Who does it serve? How does its benefit outweigh its horrible ethics, lack of intellectual rigor, and insidious analysis? Is this scholarship?

In the conclusion of the paper, the authors appear to offer a pithy justification for why this research matters, their most explicit articulation in the entire paper. They state:  

“Clinicians need to be aware that what patients regard as BD may not correspond to the conditions for which the drug treatment has been tested. The pros and cons of this wider idea of BD require further debate and research.” 

It’s worth a look at the second part of the authors’ claim, which informs the first: that “this wider idea” of bipolar disorder identity deserves “further debate and research.” 

“The pros and cons of this wider idea of BD” is premised on bipolar disorder being a voluntary choice. The academic basis for such a claim aside, the authors make a leap from vague observations that their subjects’ narratives are: 1) “consistent with ideas presented on drug company websites,” and 2) “illustrate the attachment…to their diagnosis” to specific—and not explicitly hypothetical—instances of bloggers clandestinely deploy their diagnostic identity for personal gain (“mind-altering” psychotropics and/or money). 

Clouded in academic trappings and qualifiers, the authors advance some toxic victim-shaming. The first claim (1) is too lazy to be examined in-depth. The second (2) is much more toxic and patronizing. Providing no evidence, even anecdotally, the authors suggest that bipolar disorder serves a “moral function” that enables sufferers to cling tightly to a diagnostic identity in such a way to cover up their personality flaws and legitimize bad character.

Which, of course, isn’t true. If bipolar disorder is being singularly attached to the subjects in ways that detract from their humanity, it’s because the authors chose to objectify them to tell a singular story. It’s a suspiciously paradoxical claim given the authors’ non-identitarian stance is built into this study. The authors literally designed their research in a way that enabled them to discard the author bloggers—compelling them to assume an almost organic and biological relationship with the media technology they used. 

Which circles us back to the authors’ conclusion: the call for “further research and debate.” It’s an argument with a dead end, at the dead end before we even turn onto the road.

There are no “both sides” in a “debate” about whether people suffering from severe mental illness should be believed or exposed to harm with the people who are actively trying to harm them. There is only hatred and bigotry, which is rooted only in lies and misconceptions. 

The Bad Faith of Liberal Academics

This study is bad politics and bad faith masquerading as “objective” scholarly insight—bolstered rhetorically via contradiction, sensible language, and the accoutrements of logical thinking. Instead of conducting rigorous scholarship research and attempting to locate a nuanced and more accurate “bipolar identity” in their subjects, the authors relied on value-laden reductionism and oppressive tactics to universalize a “truth” about the community this research is designed to support. 

This is the danger when academics and intellectual elites, with all sorts of baggage, are allowed to lead and control radical movements. When the 1% of liberal psychiatry collude with an establishment ideology, radicalness is only aesthetic. Critical psychiatry is all talk and no action: bolstered by superficial social justice performances and neologisms, wherein the community they purport to care about are simply set aside rather than the very heart of the matter. It’s a movement that doesn’t challenge or change any of the underlying social conditions that lead to the acceptance of some people with mental health issues into public life and the criminalization and marginalization of other “less deserving” already oppressed folks. 

The most marginalized people with mental illness experience more extreme vulnerability, in part because more aspects of their lives are directly controlled by legal and administrative systems of domination—prisons, welfare programs, drug treatment centers, homeless shelters. These intersecting vectors of control make obtaining resources especially difficult, restrict access to zones of safety, and render every loss of job, family support, or access to an advocate or a mental health care more costly. At present, the dehumanizing cells of jails and prisons represent our de facto psychiatric institutions, the long-term psychological effects of detainment on migrant children, the ways in which structural racism and police-perpetuated gun violence exacerbate mental illness.

There’s something very paternalistic and liberal about saving mentally ill people from themselves instead of challenging supremacist institutions. In my mind, the most dangerous psychiatrists and mental health “experts” are not the Szaszian, in-your-face libertarians. It’s the deceptively benevolent ones who couch their ableism and paternalism in fronts of reason, science, faith, and with the guise of “opinion.” It’s centered on exceptionalism and privilege. It’s very Euro-American, it’s very Christian, and it’s very capitalist. “Happiness is a choice! Being negatively affected by racism, sexism, homo/transphobia and poverty are choices too!” Are we going to pretend mental well-being isn’t dependent upon often hostile environmental circumstances or just be reductive and ableist? If you want to put on a perpetually brave face, good for you. But let’s not pretend that regurgitating hypnotic Yoda pseudo-optimism bullshit is universal. As a person who suffers from debilitating depression that renders me non-functional, telling me “it’ll get better” when it’s looking bleak is the worst thing you could do.

Which is to say, if we actually care about justice then we need to find a way to discern people’s intentions before we accept their argument and research as valuable. Harsh as it sounds, there’s no doubt in my mind that the authors intended to humiliate and further alienate, exclude, and stigmatize people who wrote about their bipolar disorder as a legitimate medical condition that required psychiatric treatment via medication. Why? In order(?) to maintain their control over progressive movements, liberal elites must create a diversion to shift attention away from topics that might call on them to engage the messy work of real change. To maintain power, they have to appear busy. A common tactic is to fabricate a threat: perhaps a research study that’s more about separating out intended victims from unthreatened allies than anything meaningful. A red flag is when you find yourself asking, again and again: What’s the point of this? The authors often glide over the answer through rhetorical tics. Thus, they talk of a thing being a “concern” that requires “awareness” and “more research and debate.” 

Drawing on my complex experience of “being bipolar” in addition to the original blogs written by the research subjects, I confidently state that next to nothing in this study is valid. It’s an ethical trashfire. I don’t get a choice about “being bipolar” so I’m stuck sharing an identity with the authors of the blogs. But that doesn’t mean I have to tolerate such a harmful study. 

When it comes to “being bipolar,” one side is right, and the other side is wrong. 

Telling me my identity is bad? Screw you – that’s not a neutral, unharmful opinion. Marginalized identities are not subjective, they’re not “opinions” to be politely debated by White liberal elite intellectuals. Words uttered and written about marginalized identities have an impact on their bodies. 

That so many “experts” and academics—including a noted psychiatrist—think they’re qualified or entitled to (un)diagnose ordinary people with serious mental disorders based on a half-assed (or even whole-assed) engagement with a blog is even more reason not to trust anything in this study.  No one is qualified to do this, no matter how much training they’ve had. You should be uncomfortable in the care of a mental health professional who has publicly demonstrated a willingness to judge someone, in aid of an ideology or in bad faith, who is suffering with a stigmatized disorder and has left digital breadcrumbs to their offline identity.

You don’t get to walk away from this kind of mendacity, no matter how important you are. Here’s why: it’s symptomatic of an institutional privilege and power whose checks and balances are sick, whose publication review processes are broken, and whose senior experts speak only in terms of what makes good or bad research without any reflexivity or ethical consideration.

Even if you choose to believe that the authors made all of these mistakes, not maliciously, but carelessly: it doesn’t make it any better. In fact, it makes it worse since it reveals a pattern, a habit, a system. The authors wrote with the easy knowledge that they would be believed, that theirs was the definitive and credible word, despite their distance and ignorance from the events in question. They wrote distracted, assuming no one who mattered was likely to question their account. (The bloggers would know the truth, of course. As would others with bipolar disorder. But no one told them about this study and even if they were informed, they have little ability or access to enter the conversation. They are effectively without the right to respond).

I imagine the authors will respond to my outrage in all or none of the following ways:

• Confusion: Why don’t I welcome minority viewpoints that challenge harm and coercion perpetuated by mainstream psychiatry? 
• Dismissal: I’m not competent enough to know what’s best for me. 
• Hostility: I’m brainwashed by Big Pharma or masquerading as mentally ill for my own personal agenda.
• Complacency: Continuing with what they’re doing because I can’t stop them. 

I’ve seen this pattern before. But I should also add “But, academic freedom” and “You’re a conspiracy theorist” to the list to be safe. 

Impolite Conversations

In the weeks I’ve been writing about this study, I’ve constantly worried about coming across as a respectful and serious scholar who demonstrates an appropriate “open-mindedness” in public. Gaslighting makes us question ourselves because we’re forced to entertain how academics and entire movements void us of our humanity and our capacity to define ourselves as equals.

The choice to engage in one-sided dialogue with power requires a lot of mental gymnastics. As such, there’s a tendency to self-police so as not to be too threatening, or an attempt to center and accommodate the feelings of the oppressor so that our humanity becomes easier for them to understand. I’ve written many drafts of this blog. It’s even easier to abandon a justifiably militant position in favor a more respectful one or silence simply as a means of coping over the seemingly never-ending demands for our rights to existence and freedom from violence. 

But if we truly want less ableism and bigotry towards mental illness, we need to show that ableism and bigotry are unacceptable and beyond the pale. Civil conversations that concede virtually everything are not the way to get there. 

There’s no justification for continually discounting the testimony of people diagnosed and/or suffering from serious mental illness other than to call it out as ableism and paternalism and question the motivations and credibility of the researchers who do this work. 

Given what we know about this study and the authors, this is an easy call to make. 

This research must not only be stopped; It must also be atoned for. The authors must acknowledge the harm they’ve done. 

Why do they need to do this? 

To be damn decent people for one. But in a practical sense: because people who identify as having a mental illness are the backbone of any meaningful understanding of where our problems started and what it will take to resolve them. And they don’t have a lot of our trust. Without us, the authors’ privilege will let them publish books and articles and secure speaking gigs, and be the face of a movement, but it won’t galvanize any actual action. It will generate personal power, but it won’t uplift the people they’re purporting to help.