“We don’t see things as they are, we see them as we are.” ―Anaïs Nin.
It’s May 17, 2022. Daniel Bergner’s New York Times article was released online today. “The Doctors Gave her Antipsychotics. She Decided to Live with Her Voices.” An attention-grabbing title to be sure. The piece is adapted from his book, The Mind and the Moon, also officially available as of this date. Its intent is to raise up personal stories and approaches that typically lie just beyond the public’s horizon. And, the comments section opens.
Ready. Set. Go!
Now, let’s flash forward to Sunday, May 22. 1390 comments later—no less than 72 of them my own—the Times blessedly decides to shut it down. I breathe a sigh of relief, and I take a step back to regard the mess of it all. It’s telling on so many levels.
Mainstream media is powerful, and relentlessly hard to break into if one doesn’t have the right sort of credibility, or is too many standard deviations away from mainstream views. However, what can be far more telling as to where we are as a society is not so much the articles that get published, but the ways in which the average citizen responds to them.
Bergner’s article—featuring Caroline Mazel-Carlton, Chacku Mathai, Ephraim, and Beth—is one of a very select few pieces questioning psychiatry’s rote answers to ever hit that mainstream media. It reminds me of when “The Challenge of Going Off Psychiatric Drugs” —written by Rachael Aviv and featuring Laura Delano—was published in The New Yorker in 2019. They are unapologetic departures from the conventional narrative, even rarer for not being overly bogged down with “the other side’s” perspective. Whatever imperfections we may see in what has been produced (and aren’t there always some?), these pieces act as beacons and promises for a different future.
No, not one where the systems have actually fundamentally changed. I wish, but I don’t think we’re there yet. Rather, they raise the possibility of a future where our ideas and experiences of something different more routinely at least get to be heard and seen in full, broad daylight. Where they are more than the occasional interloper in the spaces that have historically been occupied solely by our oppressors. Oh, to at least have a consistent voice at the table, because if one has an opinion that no one else ever hears, does it even really exist?
Okay, so, I’m being a bit melodramatic. Spaces like Mad in America and Madness Radio along with a handful of others have been making just that kind of room for several years now. And, of course, Madness Network News, Phoenix Rising, Dendron, State and Mind, and more did so before that. But, as gratifying as it is to write and be heard by people who largely “get it” and can relate and validate, what of the people we want and need to listen in order to make real change?
Existing spaces have offered welcome oases of differing perspectives particularly for people (those struggling themselves, family members, and providers alike) who are already seeking them out, and I’d not be giving them due credit if I didn’t laud them for opening as many other minds as they have, as well. However, reliably paving that inroad to the general public has been much slower going, and massive numbers will be required to effectively push back on the capitalistically-driven forces pinning the current narrative in place. (Pharmaceuticals do, after all, still maintain the highest lobbying budget in the nation, with healthcare next in line, and well above the gun lobby.) Regardless, here we are.
I feel like I should have been less impacted by the comments section than I was. After all, they weren’t talking about me personally. Just, you know, pretty much everything I believe in, and have worked to support. I certainly wasn’t surprised overall. Yet, across those more-than-one-thousand comments, several typical themes and familiar backlashes rose up in stark relief, and I did find them unusually… easy to see.
What follows are a handful of those themes and backlashes for your consideration, all building up to one foregone conclusion: People see what they want to see based on how they’ve learned to walk through and make sense of the world.
Aren’t You Basically All the Same Person Anyway?
“No one is disparaging Mazel-Carlton’s work, cello well played is incredible and rollerskating must be good fun.” —New York Times Commenter, Paris
“Any psychotherapist worth their salt will tell you that running from one’s shadow only grows it … Ephraim sounds very wise.” —New York Times Commenter, New York
I get that Caroline is at the center of this piece, but somehow—although she and Beth are written as two entirely separate people with distinctly different images and experiences—they aren’t actually allowed to own their truly separate identities (Beth is the cellist, not Caroline). Apparently, all white women are… interchangeable? That said, at least they are acknowledged as existing. Chacku Mathai, on the other hand, the only non-white person featured and who has arguably the best photograph of the bunch, seems to not have been noticed at all. Only Ephraim—white and male—appears afforded an existence clearly separate from Caroline.
There’s something about this—the interchangeable, the invisible, and the seen—that reflects a deeper truth around which our nation circles, and that bears further conversation. There are other layers here. Chacku was also featured in the article itself last and least. Caroline, Laura, and others have lived incredibly compelling lives, and do life-changing work, but when will we see a black or brown person featured in this manner?
And, on the other hand, perhaps Chacku’s gender was somewhat protective, even if his skin color was not. Maybe people found Caroline (and her not-even-close-to-a-doppelganger, Beth) just a bit easier to attack? Perhaps Chacku may even have been thankful for his seeming cloak of invisibility given how things played out.
Meanwhile, there’s also something to be said about who society feels they have a right to vivisect in the way that is required for these sorts of pieces to exist. There’s privilege in being featured, but also privilege (to privacy, and sometimes, to dignity) that is surrendered when the details of one’s story lies so prone and picked over. How do we decide how much is too much, versus what is for the greater good and a gift from those who offer themselves up in this sort of way? Which gifts are allowed to sit in the corner collecting dust versus those that get lavished with attention? What happens for someone after the gift has been accepted, used up, and inevitably forgotten, but all the bits and pieces remain floating around on the internet for an eternity? It gets complicated.
Moral of the Story: Welcome to the party. We already know your name… or at least the one we plan to give you.
Is There a Family Member in the House?
“Family and friends often give more accurate assessments of the benefits of medications.” —New York Times Commenter, Maine
“I find it more than puzzling that the author chose to not write anything on Mazel-Carlton’s own family. The impact on the families is usually devastating and I wonder if Mazel-Carlton has had a lot of family involvement that was not mentioned.” —New York Times Commenter, North Carolina
“An important discussion on a complex issue but what is missing from this perspective are the “voices” of family members who bring such patients to emergency care because they are rightfully scared that the individual will kill or harm themselves.” —New York Times Commenter, Massachusetts
First there were doctors. Then there were clinicians. Then there were family members. And then there were… more family members. Oh, wait, I forgot the pharmaceutical companies and other corporate interests. (They’re so consistently at the head of the line they become fixtures that are easy to miss for being such an immovable part of the landscape.)
The reality is that I can’t count how many stories I’ve heard of family members (and providers) complimenting a person for “how much better” they’re doing since getting “on the right meds,” only to eventually learn they’d taken themselves off months or even years ago. Yet the notion persists that the best judge is from without, for the within cannot be trusted.
Sure, it can be helpful to have an outside perspective, especially from someone who really knows you. If you trust them. If they’re not too caught up in battling their own demons of fear of loss of control, and self-blame, and intolerable levels of uncertainty. Because if they are so caught up, watch out.
Ultimately, the narrative that family knows best, or that the family must be protected from the terror of their loved one’s pain, is deeply harmful. Too often these ideas come from self-fulfilling prophecies of helplessness and discriminatory beliefs about frailty. Family members themselves can be desperate to push away any possible blame, or look for a respite from their own worries which is easy enough to understand given the lack of or similarly one-note support available to them.
Sometimes these sorts of takes come from providers looking to play a medicalized game of “hot potato,” viewing the person in distress as a liability more than a human, and the family member as the rescuer not of the “patient” but of the provider. Family members are regularly seen (by themselves and myriad others) as simultaneously victim and savior. It’s hard to compete with that, and perhaps that’s precisely the idea.
It’s also worth noting—before moving on—that Bergner’s piece does involve family. In fact, it concludes with Caroline supporting someone else’s family member (something she does quite frequently in her work), providing them opportunities to think about their loved ones’ experiences in ways they’ve never been offered before. Perhaps family members weren’t so forgotten after all. Maybe the real issue here is seeing family members not in the power position of being in the know, but rather, learning from those so previously dismissed.
Moral of the Story: These diagnoses are like a fountain of youth. You may not look any younger, but we’ll treat you like you’re a kid. Of the “silent unless spoken to” variety.
(I now also solidly qualify as a “family member” to someone who is struggling, and took the time to write about the complexity of that experience in the comments section of an anosognosia-ridden response piece by Norman Ornstein that interested readers can view here.)
My Side is the Best Side (Especially When It’s the Only Side)
“This is very one sided. My son who has schizophrenia does perfectly fine with no side effects or weight gain on antipsychotics for the last 17 years and would much prefer that to sinister voices.” —New York Times Commenter, SLC
“This article also focuses on a few patients with psychotic disorders without considering the impact of their disorder on family members or society. The perspective in this article leads to bias.” —New York Times Commenter, New York
DJ Jaffe, whose death in 2020 led to a lengthy obituary also published by The New York Times, was a fervent advocate for forced measures against people he referred to as “the seriously mentally ill.” He told the side so many of these commenters speak of… In countless editorials. At the White House. On television. And speaking of families, he was once given an award (one of several he received) by the National Alliance on Mental Illness (NAMI, a well-known advocacy organization that has centered family voices from its start) of New York State at their annual conference. He also maintained a “mental illness policy” website, and hosted a Facebook group, both of which live on to this day. And, he was adamantly opposed to “balance.” He argued that the people for whom he advocated were already invisible enough.
I’m loathe to agree with anything DJ. That said, he was absolutely right. In theory. The invisible bear no responsibility to share more space with those already so well seen. They know well enough that their chance to get heard is one in a million, and when it circles round they better use it for all its worth. Allowing for the ‘other side’ to take up precious space can also serve as permission to ignore all that challenges someone’s existing belief systems. That’s just how learning tends to go. We seek out what already aligns with what we believe, and anything else is left to try and chip their way in. Convincing the already underrepresented to share in those moments is essentially convincing them to participate in their own disablement. And again, perhaps that is precisely the idea.
The thing is, though, that DJ was playing the victim whilst already winning the game. Much like these commenters’ viewpoints, too. That the Times covered DJ’s death in such long form only serves to prove my point. Whining that they weren’t getting seen was all strategy and bluster, not truth. And I’ll be damned if I’ll be convinced that any of us need to share our one little sliver, while they’re over there coveting virtually the whole rest of the pie.
Moral of the Story: The seen shall cry loudest when they fall into the shadows because they’re most unused to not being heard.
It’s All About the Meds, Baby
“The article’s anti drug stance doesn’t show one example of how taking anti-psychotic medications, despite significant side effects, has literally given people their lives back.” —New York Times Commenter, California
“I vehemently disagree with the premise that discontinuing psychiatric medication in severely mentally ill patients is beneficial, or even harmless. … Severe mental illness must be treated on an ongoing basis just like physical illness.” —New York Times Commenter, Alaska
First let me start by offering this excerpt from the article that people in the comments section were so vehemently critiquing:
“[Beth] continues to have unsettling visions, but a religious practice along with a calibrated mix of drugs helps somewhat to make her life more manageable while inflicting only mild tremors, and she is playing her cello for the first time in 20 years.”
Sit with that for a minute.
People were criticizing an article for not including someone who’s explicitly been helped by psychotropics, when one of the people not only referenced but given the full professional photographer treatment was specifically described as… being helped by psychotropics.
In truth, what people really mean by “one-sided” is that they’re uncomfortable with the “other side” getting any space at all, let alone more of it than them. Because it represents a threat. Because so much of their power rests in convincing people—the diagnosed individual, families, lawmakers, providers—that their way is not just a way, but the only way. And the moment that gets threatened, it’s as if people’s brains shut down. It’s almost as if they’re having a trauma response during which the left frontal cortex shuts down and all the blood rushes to the emotional center—the amygdala—where “fight, flight, freeze, and fawn” lie in wait.
In other words, it’s not that the Hearing Voices movement says that someone should be okay with living with their voices and not taking psychiatric drugs to drown them out (because that’s not what anyone’s saying at all). It’s that the movement says that some people can; That it’s one real option among several. Some people find that threatening, and in those moments of perceived threat, their ability to truly see, hear, and reason go out the window. Fighting back with facts only raises further ire as emotions boil over.
Moral of the Story: In a world where the most progressive research says only around 20% of people will do best staying on psychotropics longer term, a fight ensues to cram 100% into the minority.
Science in Name Only (Isn’t Science at All)
“The author is clearly not a fan of neuroscience, and cherry-picking a WHO report as his only source of data is revealing – he has a particular story he wishes to tell.” —New York Times Commenter, Utah
“great to know there are people engaged in this healing by being who they are without harmful normalizing drugs.” That’s the argument that anti-vaxxers use, right up until they’re vented or dead.” —New York Times Commenter, New York
One critique I’ve heard of Bergner’s piece is that it didn’t include enough of the science that might help further legitimize the stories it seeks to tell. There’s some truth in that. It’s helpful when the science is right there next to the stories, easy to point to and all. However, given the themes already discussed, I’m not entirely sure how much difference it would have made.
There’s also some poetic justice in letting the stories stand a bit more on their own, knowing the science exists for those who care to look it up. Too many of us are sick of going ignored—sometimes to our own graves—until the same things we’ve been yelling into the void get raised up as “new discoveries.” They’re heard as if for the first time because some person with a lot more privilege got paid to research and “prove” what we’ve already known (and been saying) for years because we’ve lived it. It gets old.
That said, one of the things I’ve been most thankful to Robert Whitaker and Mad in America for over the years is creating a platform to say over and over and over again that we are on the side of science. Yes, science is not conclusive on many related matters at this point, and that’s important to note too. But the science points in a direction, and that direction supports so much of what we’re saying. And when people are forced to stop responding in emotion and generalities—to really go head to head on the points—it becomes plainly evident.
Yet no one wants to be labeled “anti-science” or a “conspiracy theorist,” even if they know it to be untrue. Those insults—even the implications of them—are often the kiss of death; An indication that everyone can stop listening to anything you have to say from here on out. They are routinely weaponized, and often met with a sigh of relief by onlookers who were momentarily afraid they might need to actually reconsider their beliefs.
Moral of the Story: Anti-science is a diagnosis for dissenters. Once diagnosed we can ignore them with impunity.
If You Don’t Fit in the Box Now, You Didn’t Belong There in the First Place
“I hope the NY Times will publish an article that better reflects the situation of people who do have psychotic disorders like schizophrenia and the research that supports medically based treatments. This article definitely supports the many people who hear voices who don’t have this brain disorder.” —Susan Inman
“Caroline Mazel-Carlton did not have schizophrenia. She is one of the many people that hear voices. A symptom doesn’t make a disease. Whether antipsychotics should have been used to treat her voices is a function of how distressed and disabled she was by them.” —Jeffrey Lieberman
And now for the heavy hitters. Inman is a parent based in Canada. She writes frequently for the Huffington Post and other publications about her experiences with her daughter, and finds no shortage of other platforms upon which to do so, as well. Even more notably, Lieberman is a psychiatrist who most recently lost his most prestigious post because of a Tweet he sent out that was rooted in racism and misogyny. Apparently that didn’t slow him down too much.
In fairness, I should acknowledge that this quote from Lieberman is actually drawn from a Letter to the Editor of The New York Times that he apparently submitted but the Times has not published. At least, not yet (and hopefully never). His wife, Rosemarie Lieberman, is circulating it around social media on his behalf. Regardless, it’s genuinely bad behavior for Inman and especially a doctor such as Lierberman to go diagnosing (or undiagnosing, as the case may be) people from afar. Surely, they both know that.
Yet, when bad behavior is the norm, and/or when you are in a privileged power position where the rules don’t apply in quite the same way, it apparently can become something of a free-for-all. The dismissal of evidence that disputes one’s hypothesis—called “confirmation bias” in the scientific world—is commonplace. But this isn’t just inanimate “evidence” we’re observing. It’s Caroline’s life. She’s a real, live human being. And she’s far from standing alone.
Perhaps Peter Bullimore (a prominent figure and internationally recognized trainer in the Hearing Voices movement) said it best when he said:
“You tell me I was just misdiagnosed. Then please also tell me who I should sue for those ten years of my life I lost when you were convinced I was seriously mentally ill?” (Note: This is a paraphrased statement, and not an exact quote.)
Moral of the Story: If you get to a point where you look too much like “us,” then the idea that you were ever too much like “them” becomes a threat.
Stop Pill-Shaming Me
“I strongly recommend, this Freddie DeBoer piece – which I thought was a solid, sober critique/rebuttal to this phenomenon.” —New York Times Commenter, New York
Mere hours after Bergner’s piece hit the Internet, Freddie deBoer hit back with an emotional video response.
“I am someone with a psychotic disorder who has suffered under the influence of medication for a long time. But I’m also someone who needs to be medicated, and the absolutely relentless insistence that I have to love my disorder, that I have to act like its somehow a super power or positive in my life is very tiring to me… I’m just so tired of being told that there’s something so wrong with my medication that it outweighs the benefits.” —Freddie deBoer
The problem is that—within the first twenty seconds—Freddie demonstrates that he doesn’t understand the Hearing Voices movement, characterizing it as “a movement of psychotic people [who say] there’s nothing wrong with them,” and “that being psychotic is just a different way to be.” (In actuality, and as aforementioned, the Hearing Voices approach does not assume but nor does it exclude the potential of regarding voice hearing in a pathologized manner, just as it does not assume nor exclude that getting rid of the voices is a desired outcome.) He then goes on to talk about his own experience as someone who has faced great struggle in the face of unusual beliefs, and significant disturbances to his emotional state.
Freddie deBoer’s pain is real, and I have no desire to even attempt to invalidate that. His desire to see newer psychiatric drugs developed that are more effective and cause less harm and that can be a real option for those who want to take them is entirely fair. It’s a hope that many people (including many connected to the Hearing Voices movement) share.
But the article doesn’t argue that everyone should uniformly love their diagnosis, or the struggles that earned them their label. It doesn’t venture to suggest that the psychotropic cons outweigh the pros for everyone across the board. For the bulk of his 10-minute-and-change video, DeBoer is responding to something else entirely and misdirecting it at this piece that apparently was received as salt in his already existing wounds. It’s clearly very painful and deeply personal to him.
Unfortunately, this phenomenon is too common, and it’s extra hard to counter because the pain people are expressing is so very real. (And few people want to try and have an intellectual debate with a person in tears. It’s not only generally ineffective, but also a bad look.) We need to make space to hear this pain, and explore what it’s really about. But we need to do that without losing sight of how these misdirected responses that essentially “misdiagnose” this article obfuscate what’s actually being shared.
As Caroline and I actually discuss in a piece we wrote for Mad in America in 2019 called “The Pill Shaming Phenomenon,” little of this is actually about the pills so much is it is about the power abuses involved in their use: with no informed consent, and as if they are the only choice available.
Moral of the Story: In a world where so many of us have been convinced to wholeheartedly adopt the belief that there’s only one way, even hearing about other ways can feel like a physical attack.
No Matter Who You Are, We See You as We Believe You to Be
“Roller skating successfully isn’t supporting yourself. Neither is playing the cello. Being so distracted that you can’t bathe or do laundry isn’t moving anyone forward.” —New York Times Commenter, New York
“We shouldn’t be content if an intelligent person can only rollerblade or play the cello for fun and live and volunteer in a group home.” —New York Times Commenter, Baltimore
Perhaps most perplexing (except not really) is that Bergner’s entire piece was about how Caroline, Chacku, Beth, and Ephraim had all moved to a place of having very full lives (albeit in less than conventional ways), but many people seemed unable to absorb that point. Between them, they are movement leaders, parents, homeowners, authors, an accomplished musician, spouses, and well-respected public figures.
For example, let’s look at Chacku. He currently works as the Director for the SAMHSA Healthy Transitions Initiative with the Center for Practice Innovations at Columbia University, while also managing his own consulting business focused on building racial equity. He’s married, a father, and highly sought after as a keynote speaker, board member, and more.
And back to Caroline. She works full-time (and then some) directing the Wildflower Alliance’s training team, developing curriculum, and traveling all over this nation and beyond to share her wisdom (sometimes with her husband of five years in tow). She’s worked consistently for over 14 years now in settings from Southern Appalachia to forensic units in Massachusetts, channeling all those experiences into the support she offers and the trainings she develops. Even by the most conventional standards, she has found substantial success in her life, both personal and professional.
Yet an astounding number of people in the comments section wondered aloud whether she could hold a job, or minimized her down to her orange roller skates as pictured in the photograph that the Times selected to represent her. Sadly, that not only demeans and diminishes who Caroline is, but also the power that roller skating has symbolized in her life. Having traveled a great deal with Caroline and heard her story several times over along the way, I know that joining a roller derby team while still living in a group home was one of her first steps to regaining a sense of citizenship in the world. I know it was on that team that she first found so many other women who were getting to be loud, proud, and quirky and respected for it, and so it was there she learned that perhaps her true self could also exist on this plane without needing to be silenced or shamed. And I’ve heard her talk about the definition of ‘recovery’ in the context of the derby world, where what it refers to is not whether or not you fall, but how you are able to get back up.
Yes, I found some of these comments among the most painful. Because so much meaning and beauty is lost. And because it’s one of the most hopeless messages of the entire thing: You can’t ever escape the trap of the lens through which we choose to see you. You will always be whoever we want you to be in our eyes. You are powerless over our perceptions.
Moral of the Story: Among the marginalized, only the exceptional get noticed, often just before we prepare to knock them back down to where we think they belong.
Challenging Psychiatry Is Accepting Chaos
“It’s not “discrimination” to want such people locked up somewhere they cannot do any harm to others. It is basic self preservation.” —New York Times Commenter, Unknown Location
“There are a lot of sick, cruel, confused, dangerous people who are better off being medicated.” —New York Times Commenter, Washington DC
“The science on the efficacy of pharmaceutical and other medical approaches is overwhelming and largely positive in that it makes lives not perfect but certainly better, and keeps dangerous people from being dangerous.” —New York Times Commenter, New York
There are certainly other things I could pull out of the New York Times comments section on Daniel Bergner’s article, including the good ol’ tried and true, “If you’ve got a diagnosis, then you’re dangerous.” And that is in fact the last one I’m going to attempt to tackle.
What I think I’ve come to realize over the years is that—for too many people—challenging psychiatry means accepting chaos. It withdraws the easy surface answer that tells us, “We’ll all be safe if we just get those people into treatment,” or lock them away, or what have you.
Challenging psychiatry doesn’t mean accepting the Hearing Voices movement as the new answer. An awful lot of the time, it means accepting that we don’t know. And that is too terrifying to bear for many people who just want to go about their day, and need to have some sense of safety in order to reasonably do so.
Some of us find liberation in the admission of what we don’t know. It means opportunity, exploration, and the power to self-determine a new path. Others find intolerable and paralyzing fear. That fear drives them to look away from inconvenient truths, and to participate in the construction of a system that employs its enforcers to treat outsiders as threats to the illusion of safety it was designed to preserve.
Bergner’s piece challenged that illusion in a substantive way and in a forum that was too visible to ignore or discredit outright. That made some people angry, even outraged. Or scared. Or all of the above. The New York Times’ comments section is what resulted. As discouraging as it was, at least it raised up some of the realities for us to see a little more clearly and all at once.
Moral of the Story: It’s not about the truth. It never has been. And so truth as the lone weapon will inevitably fail.
I guess that leaves us in a place of needing to better figure out how to use the magic of illusions ourselves if we truly intend to elicit lasting change. Convincing people to simply give up their favorite illusions seems the most futile mission of all as it requires a fundamental shift in human nature. That said, I hope we can find a way to continue to weave in what we know to be real all the same. Too many of us have found liberation in truth to just let it go now.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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