Building Mutual Aid Communities Outside the Clinical Context: Q&A with Cooper Davis
And reflections on relationships with psychotropics gone awry
Cooper Davis is the Executive Director of Inner Compass Initiative. He has worked in the mental health non-profit space for a decade, previously building and running peer support programs for participants in the State of Connecticut Department of Mental Health and Addiction Services. In prior lives, he has worked in journalism and television production. He is married to Laura Delano, author of the 2025 memoir “Unshrunk.”
Awais Aftab is a psychiatrist in Cleveland, OH, and clinical assistant professor of psychiatry at Case Western Reserve University. He is interested in conceptual and philosophical issues in psychiatry and writes online at Psychiatry at the Margins. His first book, Conversations in Critical Psychiatry (OUP, 2024), is an edited collection of interviews.
Aftab: I’m interested in the idea that some people can develop an unhealthy relationship with psychiatric medications. You have some personal experience with that, and you’ve observed this play out in many people. I’d love to talk to you about this, especially because I think most clinicians are poorly equipped to deal with this sort of dynamic.
Let’s start by talking about your story and your experiences with various mental health problems, various psychiatric medications, and your ultimate decision that your life would be better off without them.
Davis: In my case, it started with stimulants for ADHD. I was diagnosed in first grade (1991 was a time when many boys received similar diagnoses, spurred on by media interest in Ritalin). Despite that diagnosis, my parents forbade me from taking anything for it, preferring to work with diet and exercise and keeping me engaged in high stimulation, high impact activities. I fit the classic mold of highly-intelligent, undisciplined behavior problem/class clown. Most of the adults in my life found this acceptable (if tedious), until middle school.
With the simultaneous entrance of hormonal changes, against the backdrop of an amicable yet uprooting divorce, I found myself no longer getting as many laughs. My spirit darkened as I heard more and more feedback along the lines of “you are wasting your potential” and “I don't understand why you refuse to apply yourself.” While I had lived alongside the sense that I had some kind of mental “difference” with regards to attention and focus, it never struck me as problematic until this time, when whispers of “college” and “future careers” began to impinge on my awareness.
Ultimately, it was under my own recognizance that, at age 17, I presented my prior diagnosis to my GP during a physical, and shared my present curiosity about stimulant drugs. Almost immediately I began on 5 mg Ritalin twice a day, and just as quickly I went from a solid C/D student to straight A’s.
I was a poster child for pharmacological “scaffolding” enabling latent capabilities. I credit the Ritalin (and later other formulations) with much of my early trajectory towards academic and professional success. But socially, I felt estranged from myself as long as I was on drugs. I became someone else, in part because that’s what happens in one’s late teens and early 20s, but there was a measurable degree to which my sense of self and my comfort with it was altered by the presence of those synthetic molecules, in my body and in my life.
Daily amphetamine use eventually led to tolerance, along with sleep and anxiety issues. These, in turn, were easily treated with benzodiazepines and “Z-drugs” (Lunesta, Ambien), since I was already seeing a psychiatrist regularly for my Adderall prescription (“So, how are things going, champ?” he would ask). After a while, managing my life with alternating stimulants and sedatives day after day, month after month, left me feeling hollowed out, melancholic, and depressed. Thus began the quest for the “right antidepressant.”
I tried many antidepressants, but none worked, which your readers will likely understand (correctly) as evidence I was being treated mainly for drug effects at this point. Still, the quest continued. “Treatment-resistant” depression led to off-label experimentation. Eventually, a particularly maverick psychiatrist suggested a cocktail which crushed my “depression” and replaced it with a smoldering, edgy hyperactivity that, according to family and friends, was hard to be around. I was at last feeling reliably comfortable in my skin, but no longer compatible with the life I had built for myself on the foundation supplied by the stimulants in the first place.
Eight years into what became a 13-year relationship with psychiatric drugs, I transformed from a distractible, forgetful, impulsive teen into an unemployable, passionless, dissipated adult. I had no vision for the future. Any motivation, animation, or comfort came from drugs. My sense of agency was reduced to controlling my access to pills, infusing my personality with cynical nihilism.
Davis: I had no vision for the future. Any motivation, animation, or comfort came from drugs. My sense of agency was reduced to controlling my access to pills, infusing my personality with cynical nihilism.
From this low point, I eventually found a way out. Unsurprisingly, it took time and involved no more drugs, diagnoses, or psychiatry. I won’t bore anyone with the details of my latter act, except to say I relied heavily on mutual aid organizations that focused on virtue and character as a means of finding one’s optimal place in the world. And while those supportive community relationships were often expressed in the language of addiction, I never quite fit in because my story was not quite an addiction story. And while many will say I just experienced poor “care,” I will say this: I found my way to the care I received on a quest for proper mental health treatment. The successes I had early on may not necessarily have ended in the later losses, had things been different. But I can say with total confidence that my story is not an aberration, and among the 10-12 different clinicians and professionals I saw over this time who aided and abetted my trajectory, only two of them correctly identified what was happening for me, and even they were powerless to stop it.
My life was drastically altered by this experience. While I don’t regret it because it led me here, I’ve struggled with the losses—the years of dislocation and missed special moments when I wasn’t myself. I’ve been called a “pill shamer” despite the fact that I’m only sharing my personal story; I don’t judge those who take these drugs—I once did myself. People need to know how quickly you can get swept away and how hard it is to swim back.
Aftab: In April 2024 you wrote a post on X/Twitter about your wife that stayed with me. I didn’t know that at the time, but you were talking about Laura Delano, whose memoir “Unshrunk” has just been published, and subsequently I had the pleasure of reading an advanced copy and reviewing the book. Although I’ve discussed details of Laura’s story in my earlier review (and I strongly encourage folks to read the book!), I still want to share the entire text of your post because you eloquently capture many aspects of the story that deserve wider reflection:
“In the early/mid 00’s, a number of highly regarded psychiatrists were in agreement: my wife was so severely mentally ill, she should not hope to have a career, to marry, to have children. Rather, they told her, she should come to terms with reality, and lower her expectations accordingly - for herself, for her dreams, for the one precious life before her. The very best psychiatric specialists in Boston and New York at the time were adamant in their concurrence: Her best hope for a life worth living would be to dedicate her energies ENTIRELY to managing the symptoms of her otherwise incurable, lifelong mental disorder.
Through careful monitoring of her symptoms, maintaining collaborative, trusting relationships with her doctors and therapists, and continuing to refine and optimize the unique, multilayered drug cocktail that enabled her to function; she might aspire to be well enough to stay out of institutions and live somewhat independently. She might be able to enjoy family holidays. Perhaps, with some prolonged stability, she might even be able to care for a dog.
For as long as she accepted this story about herself as true, it WAS true: her life was a sad mess that occurred in the spaces between appointments. She accrued nothing; to hope for more was delusion, or worse: self injurious.
When people who find themselves in this position have the opportunity to die, they are right to take it. We afford that dignity to any other terminal patient who wishes to skip to the end.
The only problem is: sometimes they aren’t actually sick at all. Sometimes, the treatment itself is so toxic, so misguided and myopically administered, that patients lose track of their own truth under layers of expert opinion, therapeutic gobbledygook, and powerful psychotropics.
This happens to teenagers mostly, but it can happen later in life as well. And, IMHO, it happens more than anyone would like to imagine.
Slowly but surely, a crisis is followed by a diagnosis which is followed by a drug. Another crisis; the cycle continues. The absences turn into withdrawals, the appointments turn into stays. The drugs stack up, doses increase, tolerance builds, baseline reality recedes in both memory and perception. Patients find themselves living in a reality that only makes sense if they are truly as disabled and insane as everyone seems to think.
And, IF this goes on for years, not just the patient but their carers, treatment team and even their loved ones accept (with a weary, pragmatic compassion): death, of one kind or another, is close by. It’s “an option”.
My wife turned 40 last year. The only drug she takes is prepared by me, in the morning, before the kids wake up and the house is quiet: I make her pour-over cup of light roasted yirgacheffe. She works from home, running two businesses from her laptop in between time with our three year old. Last week, she failed to hold on to her championship in the annual squash tournament she participates in, losing in the third round. We do not have a dog: just as was thought by the compassionate professionals who once guided her every decision, she and I are in agreement that a dog would be “too much”.”
I have worked with enough people with serious and persistent mental illness that I know that this isn’t representative of many or perhaps even most people with chronic psychiatric conditions, but I have no doubt that it applies to some people. I don’t quite know how many, and I find the thought unsettling. It horrifies me that the mental healthcare system ends up making some people sicker.
How do you understand the interaction between chronic illnesses and the stories we tell about them?
Davis: I think we underestimate the degree to which framing and naming becomes a cue, permission structure, or container that will shape the nature of whatever is flowing into it, both from the perspective of the patient and that of the psychiatrist. When you’re trained to see a state of being through the linguistic—and therefore conceptual—framework of disease or illness, your mind can close itself off to other possible meanings or reasons for that state, which in fact might only be a “problem” and not an illness (and could, in fact, be a conduit to something better).
Davis: When you’re trained to see a state of being through the framework of disease or illness, your mind can close itself off to other possible meanings or reasons for that state
The ADHD diagnosis can be a good example. Take an ADHD influencer’s list of “what it’s like to have ADHD” and apply it to another scenario. What may be a crippling deficit in school could be an asset as a CEO of a big company. However, if these traits are labeled as symptoms while kids are young and in a context where they are liabilities, the child—and the adults around them—view these differences as unwanted weaknesses to be embarrassed about and suppressed. Put them on Adderall, and those “problems” might fade or become more acceptable temporarily. Remove Adderall after school, once they’ve gained security and autonomy as adults, perhaps even as a CEO, and the same symptoms may return. Because these traits were problematized and minimized during development, there was no chance to “get better at having ADHD,” so they reemerge as liabilities.
This phenomenon isn’t limited to common challenges like attention or distractibility. While many suffer greatly from hallucinations, I know others who hear voices and have found a sustainable, meaningful life by rejecting the idea that it’s a “symptom” of a “chronic illness,” instead discovering nonmedical ways to understand these states and practical methods to integrate their voices into daily life. This doesn’t mean all mental illness is a medical misunderstanding of unusual human conditions, but if individuals can function well without such labels, that path should be available to them.
I believe there’s a vast universe of opportunity for humans who, when facing challenging qualities within themselves, opt not to seek expert guidance from licensed clinicians who codify them as deficiencies or problems needing solutions, but instead turn to those who’ve “been there” and learned to transform these raw materials into something useful. If you’re often sad and emotionally unstable, you can seek relief and improve your quality of life significantly, at least temporarily. However, serious questions remain: How sustainable is this approach? What would be the outcome of the alternative? Despite the potential benefits, are we considering what might be lost or never gained due to a medicalized interpretation and pharmaceutical intervention?
If medicine aims to optimize outcomes, I worry psychiatry focuses too much on short-term results. I can see plenty of evidence for short-term benefits (including in my own life), but long-term outcomes are less clear. Can we say with certainty that the quality of a person’s life—or of our society’s well-being, as a whole—is notably better with long-term use of these drugs than without them? I’m not sure we can. And vice versa: it’s impossible to know whether someone who’s struggled for a long time unmedicated would have fared significantly better had they been prescribed something. I imagine some of your readers might respond to this by saying that properly conducted psychiatric practice builds into its methodology an awareness of these limits to knowledge. For my own part, I’m always interested in hearing the ways in which psychiatrists account for the unknowable, especially when the cost of hubris can be so high.
Aftab: What do you think is the path forward? Given the recognition that medications are tools that can both help and harm, how can we collectively have a better relationship with these tools?
Davis: Ideally, psychiatry simply offers its best available tools to people who might want to try them. Getting there from here, however, is unlikely until psychiatry’s state-sanctioned position as intermediary between pharmaceutical profit seekers, insurance companies, courts of law, school systems, and the open market for pharmaceutical products is changed.
If you could relieve the psychiatric profession and its diagnostic paradigm from the gatekeeper position between all these entities somehow, I believe the field would naturally gravitate towards other, more beneficial functions. Nobody has much negative to say about the bone setter or the trauma surgeon because there aren’t a lot of edge cases. Psychiatry might have a lot to gain and a lot to offer if it’s given the freedom to better discern its own proper application.
Many friends and colleagues engaged in full-time discussion of these matters might suggest the way forward heavily involves regulatory changes and legislative solutions, and I don’t disagree. But I personally feel increasingly convinced that those who believe the current mental health industry is failing in significant ways should focus their energies on what can be built outside of that framework (but of similar utility); to not just act as a check, but also to function as a second beacon of light for people finding themselves lost at sea and looking for safe harbor. There are some categories of personal malady where a plurality of restorative mechanisms exist side by side; not so with mental health treatment, where the default paradigm exerts enormous gravity on anything in the periphery.
Davis: I personally feel increasingly convinced that those who believe the current mental health industry is failing in significant ways should focus their energies on what can be built outside of that framework.
Currently, as soon as the issue of “mental health” enters the chat, there is an impulse to defer to the experts, which is generally taken to mean a doctor, therapist, social worker, or some other credentialed expert. At a time of increasing medicalization of normal human experience, this eventually starts to flirt with farcicality, as an ever-broadening range of the major events and transitions that make us human (birth, death, puberty, academic and professional challenges, etc.) fall under the remit of medical experts.
What I’d love to see is the ascendance of experiential expertise in the context of mental health. And ultimately, I think we will see a parallel knowledge production and transfer mechanism—a new information economy—enter the marketplace, one that derives its value from the personal experiences of those who have been through it for themselves. And I do not think that this idea is impossible, or dangerous, and if you want to see an example of how it works, you can look towards Alcoholics Anonymous. Addiction medicine does not view Alcoholics Anonymous as some kind of threat to safety; they often explicitly recommend it and will generally recognize that AA can pick up and run with the ball when medical approaches have been exhausted. In the world of mental health, for some reason there’s been a failure to see such things really take off.
Organizations like DBSA and NAMI offer all kinds of peer support-flavored connections, but I think that any truly effective model ultimately needs to find itself working outside of any medical or clinical context. Generally, those groups are serving folks who are coming to those meetings from within the psychiatric framework.
In medicalized support group settings, there is typically a limit to what is considered “safe” for free and open discussion—a hard floor beneath any discourse, beyond which further deconstruction of the conceptual foundation is not welcomed or permitted. And as a result, the dominant set of acceptable ideas about mental health within earshot of psychiatric patients today is almost entirely defined by people other than patients.
At Inner Compass Initiative, we develop and run programs that are not only useful to our community but also function as models that demonstrate how non-professionalized support could work—not “peer support,” which itself is a paid service that has largely been swallowed up by hospitals and mental health organizations, but rather mutual aid.
We envision a separate realm in which knowledge and support can be exchanged by laypeople, undergirded by a cohesive set of values and ethics developed by people who once turned to the mental health industry for answers but no longer do.
This realm would not exist in contradiction or juxtaposition to psychiatry and other mental health specialties, and in fact, might well have a beneficial effect on the mainstream mental health industry: the doctors who feel frustrated with patients who are non-compliant or otherwise resistant to their offerings, but who feel obligated to “do something,” could refer them instead to a community of other people who have already been down these roads, found out the hard way that drugs and diagnosis were not their answers, and figured out for themselves the non-medical, non-clinical solution to their shared problems.
I do not pretend to know exactly what this parallel space needs to have, but in the age of 24/7 digital interconnectivity, I do think we are coming to this at an auspicious moment. We are in the middle of an information revolution that most certainly will dwarf the agricultural and industrial revolutions in terms of the enormity of its permanent impact on our species. In particular, two internet-native generations have been born, and the first one is starting to enter the beginnings of middle age.
Right now, in early 2025, it would seem the internet is still a net negative, with some of its major cultural products being anxiety, confusion, and paranoia. To many people, the fully democratized, free information utopia of the early 1990s seems like a naive fantasy. I actually think it’s still coming, we just need some more time and a lot more suffering before our global culture can develop the sensibilities, customs, and etiquette required to put this awesome power to productive use.
And in the meantime, while in the absolute thick of this transition to a daily online screen-mediated reality that is literally engineered by the best and brightest minds on the planet to be as corrosive and hostile as possible to the human mind, we are pretending as though the human casualties of these conditions will find succor and stability by seeking engagement with “mental health services” that draw upon seven decades of mixed results and unflattering trend lines.
I think this is a perfect time to take some of the burden off the psychiatric profession, and expand the lexicon of what can be defined as “legitimate help” beyond professional licensure and prescription pads.
Aftab: Are you prepared for the eventuality that a parallel peer-led community would run into limitations and failures of its own?
Davis: All communities of people have their limitations and encounter failures. This is actually one of the strengths of community work and of effective communication. Obstacles often inspire questioning and growth. I use the word parallel, not “alternative,” for a reason: a failure within a support system is mitigated by having access to other discrete supports nearby. I am not interested in seeing a total replacement for our current mental health system; I want to see a lateral expansion beyond it, and am working on the portion of that expansion that feels most emergent and necessary to me. Perhaps it’s no more likely to meaningfully address human problems than what we are currently relying on, but if it can be built out of a different substrate, then perhaps it can offer things that aren’t currently that easy to find.
Aftab: What do you think professionals like me—philosophically informed clinicians or people genuinely interested in taking critique seriously and improving clinical practice—are currently overlooking in these debates? What are the blind spots in our engagement with critique?
Davis: I think that many psychiatrists mean well, and I am glad that psychiatrists, such as yourself, are open to discussing different perspectives. I am, however, surprised by how poorly some psychiatrists understand the degree to which their profession and its frameworks have influenced cultural attitudes toward the mind and spirit. Our sensemaking apparatus and narratives treat psychiatry’s frameworks and methods as an objective reality.
Whether psychiatry should disavow the public of myths and misinformation is debatable, but when the “chemical imbalance” theory is rejudged on Twitter/X every six months, psychiatrists often defensively claim, “We never said that!” instead of admitting, “Yes, some of us did and still do say that. We shouldn’t, and it’s crucial for the media and public to know that sadness isn’t just an abnormal lack of serotonin. We understand your anger and aren’t sure how much is our responsibility, but we know we must strongly reject this lie, which has been amplified by irresponsible pharmaceutical marketing with which we have a complex relationship, to maintain credibility.”
Aftab: What’s your impression of the current state of affairs in the harmed patient/psychiatric survivor communities? You once told me that the old, liberatory consumer/survivor/ex-patient movement is “essentially gone.” Say more about that.
Davis: When people who’ve been injured by psychiatric diagnoses and treatments that they were not previously informed about go on a quest for answers on the internet, they often cross paths with two different kinds of virtual spaces. In the first type of space, folks are challenging and deconstructing the psychiatric model, often focusing on publicizing problems and cataloging grievances. (You might call these spaces “antipsychiatry” or “critical psychiatry” in orientation). The other type of space is dedicated to managing the effects of drug injury, including tapering and withdrawal from psych drugs. Each community has evolved its own ethos, customs, and shared perspectives—even its own language.
Prior to the internet’s rise, you had a movement that was largely oriented around the human rights issues at the heart of psychiatry, such as forced hospitalization, ECT, and medication. Though some in this movement of self-declared ex-mental patients might have considered themselves “antipsychiatry,” the focus of organizing efforts was, for the large part, about freedom and choice—and about stopping the degrading abuses many forcibly psychiatrized people had faced.
Most of the people involved back then had been directly harmed by the psychiatric institution, whether in a doctor’s office, a clinic, a group home, or a hospital. At the time—the peak of this movement was the 1960s to 1980s—this experience was relatively uncommon; most Americans, after all, were unlikely to interface with psychiatry ever in their lives.
But the influence of what you could call the “mental health industrial complex” has, of course, massively expanded in recent decades, such that a huge percentage of the population now interfaces directly (or indirectly via family members) with the psychiatric paradigm via the consumption of pharmaceutical products (the majority of which are prescribed by GPs, not psychiatrists). I’d be willing to wager that a lot of these people do not think of themselves as “psychiatric patients” in the way that people did decades ago; this, of course, makes sense, as they might never even meet a psychiatrist.
In large part this is due to the successful infiltration of pharmaceutical products into people’s day-to-day realities via direct-to-consumer advertising, successful lobbying efforts of guild organizations and industry, and the medicalization of everyday life. Today, you can be a psychiatric patient (in the sense that you’re consuming a psychiatric product) without even realizing it.
So what does that mean? It means that a significant percentage of the group best positioned to act as a check on psychiatry does not even realize they are needed for this. There’s no way to know what percentage of people currently taking psychiatric drugs are being harmed by them, in large part because of the distorting effect on knowledge production caused by the conflation of psychiatric iatrogenesis with symptoms of mental illness.
Whether adverse drug effects, the disabling self-fulfilling prophecy that can come from believing oneself to have an incurable brain disease, or debilitating withdrawal symptoms caused by stopping a drug too quickly, these harms are far too often not recognized by patients, their family and friends, their doctors and therapists, and society at large for what they are.
This then fosters the misperception that the psychiatric profession, the many organizations and institutions that depend on it, and its regulators are doing a fine job policing themselves, and maligning those who would say otherwise by calling them outside agitators or ideologues who are unwilling to acknowledge a good thing that is crystal clear and obvious to all the experts in the field.
What I would personally love to see happen is for the constituents of a modern, younger, mostly online movement of people concerned with drug injury, withdrawal, and medicalization of normal human conditions to discover the rich heritage of thought and theory that, whether they realize it or not, is their rightful inheritance, and then take pains to adopt it for a modern world in which MOST people engaging with psychiatry are not particularly at risk. Those who continue to carry the torch of what remains of the liberatory, patient-led movements have much to offer those who currently are inventing their own alternative frameworks for understanding their experiences, but these two groups do not cross paths or share spaces as much as many would assume.
Aftab: A lot of psychiatrists who become active online on places such as Twitter/X are often surprised and taken aback by the utter contempt expressed towards psychiatry by vocal representatives. And yet such individuals expect professionals to take them seriously and engage with them in earnest even though they have little to say to them other than demeaning comments and some sort of expectation that professionals should publicly self-flagellate in penance. Suffice it to say, the dynamic has not worked out very well.
It seems to me that while many in the iatrogenic harm community are often quite knowledgeable about various aspects of psychopharmacology, they seem to lack the scientific spirit of open-ended inquiry and rituals of self-critique that are the norm in scholarly communities. That is, the spirit is more self-help, activism, and victim-identity.
Another curious thing for me is that the more vocal voices of the prescribed harm community on Twitter are eager to interpret any and all critiques of “antipsychiatry” as being directed at them, even when it is clarified that they are not the referent. I’ve experienced this myself, since I often comment on antipsychiatry as a phenomenon (e.g. see here and here), and any time this comes up on Twitter, some harmed patient or another automatically assumes that I am talking about them and gets mad at me.
What are your thoughts on these observations?
Davis: Psychiatrists engage with psychiatry as a chosen profession, and an ideological framework they find worthy of voluntarily committing enormous time, money, and effort towards. The patient/ex-patient/prescribed harm community engages psychiatry as an imposed set of conditions and vector of control over their lives.
Many people initially engage with psychiatry by choice (whether that choice is meaningful and informed and therefore truly a choice is a topic for a different conversation). But the moment they recognize iatrogenesis in their lives is the moment at which the choice of whether to engage with psychiatry is taken from them (at least, not until they are fully recovered from iatrogenic harm and feel ready to “move on,” which, for many people, is understandably far from easy).
Psychiatry, for them, is an institution and an industry that holds enormous, practically absolute determinative power over them, the unfolding of their lives, and the lives of those they love. Even if they no longer believe in psychiatric diagnosis or take any psychiatric drugs, their present is infused by their past relationship to psychiatry.
At the stroke of a pen, a psychiatrist has the power to:
Undermine an individual’s sense of identity, reshaping how they perceive themselves and how they are viewed by family, employers and the state.
Grant or deny access to treatments like drugs that can fundamentally alter the course of a person’s life.
Prescribe medications, despite incomplete knowledge of long-term side effects, stretching the boundaries of informed consent.
Strip away a person’s access to fresh air, personal possessions, loved ones, bodily autonomy, and due process through involuntary treatment.
Serve as the primary expert witness in determining whether someone bears responsibility for a crime.
Act as the decisive voice in assessing whether a person is fit to retain custody of their child.
What you often see on Twitter/X are situations where people sought help from a psychiatrist for struggles caused by difficult but often temporary circumstances. Instead of finding relief, they ended up struggling even more years later—long after the original issue had been resolved.
They realize they are now dependent on drugs they no longer need (and may never have needed) and face a difficult choice: either (1) attempt to biochemically disentangle themselves from physical drug dependence and (re)learn how to function after years of daily drug use that replaced the need and/or impaired the ability to develop life skills, coping strategies, or habits, or (2) resign themselves to managing adverse effects and accept further dependence not only on drugs they no longer want to be on, but also on health insurance, regular office visits, ongoing diagnoses, and pharmacy refills. And for the people in this community who have been on polypharmacy, the timeline and challenges only expand.
And then of course, for the many people who really really really want to get off their drugs, they are forced to stay on them to avoid enduring a grueling withdrawal for which they are unable to rely on their prescriber to oversee. In part this is because their prescribers have zero training or education in how to safely taper patients. And in part, it’s because there’s a lack of rigorous research into the prevalence and severity of withdrawal symptoms, leading to a distinct possibility of having withdrawal symptoms improperly understood as a “relapse” of the original condition or the emergence of some new psychiatric malady.
After realizing their harms will not be meaningfully acknowledged or addressed, many people have no choice but to seek compassionate support and reliable information elsewhere, in online “layperson” community spaces. Commiserating over the alienating, terrifying harms they’ve experienced—and the fact that the very system that caused these harms is unwilling or unable to alleviate them—their anger and indignation expand into the vehemence you see leveled indiscriminately towards anyone who acts as an apologist for that system, which now seems (to them) to be committing egregious harm on a wholesale level.
To expect people in such circumstances to approach the issue with open-minded scientific inquiry is, with all due respect, unreasonable. It’s not their job to cleanse their rhetoric of anger and engage in measured dialogue with the profession they feel caused them harm; the reason they’re speaking up online in the first place is in search of validation and understanding, and maybe as a warning to others. The psychiatrist, scrolling through the criticism on their phone, can sigh, close the app, and move on with their evening, while the harmed patient sits, eyes wet, waiting for a response, feeling alone and terrified by the world’s indifference to their suffering.
It’s easy to dismiss this as the struggles of someone who is mentally ill, fated from childhood to a difficult life and searching for someone to blame. But I have seen enough cases where a single antidepressant, taken for 8-10 years, was enough to irrevocably alter the most critical and consequential aspects of a person’s life. To them, this isn’t about science, the limits of knowledge, or ‘doing the best we could with what we knew at the time.’ They are searching for a reason for why this happened to them—and they really have no choice but to live daily with the fear that there may be no reason at all. For others, it may just be a job, or an academic interest. For them, it is everything.
Aftab: What sort of problems exist in peer-led forums and communities dedicated to tapering and withdrawal? How is heterogeneity of experiences, problems, and outcomes treated in such contexts?
Davis: I have seen it happen over and over again: folks get stuck in these online spaces, getting sucked into a vortex of understandable immobilizing terror, rage, and despair instead of continuing downstream on this sometimes beautiful, usually painful process of self-discovery and self-reinvention.
So instead of expending their energy and wisdom and desire for change in themselves and the world towards building truly new solutions to problems that currently lack good ones, they find themselves having the same conversation over and over again, endlessly re-articulating and reifying their own lack of agency.
Davis: I have seen it happen over and over again: folks get stuck in these online spaces, getting sucked into a vortex of understandable immobilizing terror, rage, and despair instead of continuing downstream on this sometimes beautiful, usually painful process of self-discovery and self-reinvention.
All the people who would otherwise be expressing their passion and operationalizing their painful personal traumas are stuck reliving them and demanding resolutions from the very entities that harmed them—entities that often have no incentive to apologize, let alone self-correct.
Basically, when pain is the thing that opens your mind to the possibility that the paradigm you took for granted might be incomplete or inaccurate, you are now limited in your ability to use that open-mindedness and the possibility for growth and change that it can afford you. This is because you must first seek some resolution or at least validation for the pain that brought you there.
What the patient community often overlooks is that psychiatry does not grant these powers to itself. It is we, the people, who demand mechanisms to conceptualize, manage, and address human emotional and cognitive challenges on a large scale.
The State, acting as a servant of the people, fulfills this demand in the way states typically do: by balancing competing incentives and interests to satisfy the most powerful stakeholders while keeping the broader public reasonably satisfied. From there, the State works through media and institutions to cultivate a baseline level of consent.
Psychiatry, as a standalone discipline and practice, is probably far from optimized for this function, but it’s hard to imagine an acceptable alternative framework operating at the nexus of intractable individual “problems of living,” the insurance industry, court and judicial systems, government regulators, social service and healthcare agencies, and pharmaceutical companies. The vast majority of the harmful things that happen to people who’ve turned to psychiatry for help happen because the general public is turning towards the profession for things it is simply not equipped to provide.
When I see people talking about “abolish psychiatry,” I assume they fail to realize that psychiatry, for all its faults, might actually be doing as good of a job as any other alternative traffic controller who might occupy this exceedingly ugly, unwieldy civilizational intersection.
Davis: When I see people talking about “abolish psychiatry,” I assume they fail to realize that psychiatry, for all its faults, might actually be doing as good of a job as any other alternative traffic controller who might occupy this exceedingly ugly, unwieldy civilizational intersection.
Aftab: What is Inner Compass Initiative, and what is it trying to achieve?
Davis: Inner Compass Initiative is a 501c3 nonprofit organization based in the United States and serving the world. Our mission is to help people make more informed choices around psychiatric diagnoses, drugs, and drug withdrawal. We operate a number of different programs and initiatives, all centered around the idea that the expertise derived from direct personal experience is a hugely undervalued asset in our cultural conversations about mental health. Coming into our 9th year of operations, we are in the process of expanding the scope of what we do, with a much greater focus on storytelling, while also better leveraging the principles of mutual aid to help us fulfill our mission.
We are not “anti-psychiatry,” “anti-drug,” or “anti-diagnosis.” What we are for is providing people with straightforward, factual information about psychiatric treatments, the diagnostic paradigm, and alternatives to them. If, after getting that information, some people find solace in medicalizing their pain and seeking the guidance of a clinician, we are unreserved in our appreciation for mental health professionals and treatments being there for those who want them.
While there are some great individuals and organizations out there working to reform the mental health industry, we’re focused on bringing to life our positive vision for a future of seeking help OUTSIDE of that industry, especially for the things that the industry has a harder time providing. To that end, we are pro-informed choice, pro-mutual aid, pro-demedicalization.
One of the arguments in favor of drug-based psychiatric treatment is that you needn’t have to disrupt your life or interfere with the habits and structures that sustain you in order to address your difficulties. Unlike a therapist, a pill is portable, adjustable, and can follow you into your various personal, professional, and lifestyle contexts.
That idea originated at a time when you did not have the ability to walk around with a 24/7 mutual aid network in your pocket.
Given the success in both outcomes and popularity of other mutual aid models (AA being chief among them but certainly not the only one), I think the digitized incarnation of these models has only begun to see development. Already you see businesses and initiatives popping up to take mutual aid beyond the confines of the church basement. Fundamentally, this kind of support requires two key ingredients:
You need to remove the transactional dynamic. AA is massively successful, and it runs purely on empathy as the driver of activity. As soon as monetary exchange enters the picture, I think you are interfering with the perception of incentives, if not the incentives themselves.
You need to have an ideological backbone. In AA, you have two foundational texts (The Big Book and the 12 Steps & 12 Traditions), which provide clear instruction or directions for any imaginable disagreement that might arise in the course of implementing and maintaining fidelity to the model, and offer comprehensive prophylaxis against any imaginable corrosive force. Moreover, anyone attending a meeting is entering a space where the specific contours of the mutually shared “problem,” as well as the source of the solution, is fully articulated and available for anyone to reference at any time. This means that meetings are not clogged up with talmudic discursions into the minutiae of what qualifies as alcoholism vs “heavy drinking,” or whether sufferers are experiencing physiological withdrawal effects vs. resurfaced trauma or whatever. It clears the floor for generative discussions centered around sharing experiences and centering mutuality.
I think Inner Compass is a strong candidate for providing the scaffolding needed to develop, refine, and maintain similar kinds of models. In the past decade, we have earned enormous credibility not only with communities who identify as having been poorly served by the mental health industry and treatment, but also with prescribers, practitioners, and family members, who may be more ambivalent about the appropriate role of psychiatry in navigating these kinds of struggles.
Also, over the last decade, we learned a great deal about this landscape as it has developed and heard from thousands of people about their experiences. I won’t use this space to expand on all our different programs and initiatives, but it’s worth saying that all that we do is centered around the fundamental idea that direct personal experience, if given proper framing and emphasis, is an extremely underutilized tool for understanding and growing through the experiences that generally fall under the umbrella category of “mental health challenges.” And so what we are working on today is trying to find ways to collect, curate, and amplify those personal stories, with a total emphasis on their non-clinical dimensions and interpretations.
As the coming years see increasing disruption to established ideas about healthcare and mental health care in particular, we hope that the seriousness and respect for all parties with which we approach this work will allow us to take an active role in building a strong coalition aligned towards our vision of the future: thriving, highly visible and accessible, layperson-led, non-clinical mutual aid networks that provide a parallel pathway for people seeking aid and support.
And just as 12-step groups have grown far beyond the initial impetus individuals have to stop drinking alcohol, what we are building can start with offering people an off-ramp from a psychiatrized self-orientation towards something both newer and much, much older than what a medicalized view of their struggles can ever provide.
Aftab: In these early stages, I imagine Inner Compass Initiative is preferentially likely to attract psychiatric survivors who are dealing with iatrogenic harm from possibly unnecessary treatment and are highly motivated to understand their problems in non-medical ways. Do you think there is a danger that Inner Compass Initiative could become, despite your intentions, simply another online space dominated by prescribed-harm, ex-patient sentiment? How do you plan for it to be a welcoming space for individuals who are experiencing genuine emotional and behavioral challenges that they wish to address via a fellowship of peers, and who otherwise have no “anti-psychiatry” axe to grind?
Davis: If Inner Compass Initiative’s online community spaces become dominated by negative sentiment, we have failed in our mission, and I don’t think we would see much reason to carry on with the project. People seek us out presently in large part because they are looking for an online community that is oriented towards hope, agency, and self-determination. We have plenty of space for people who feel they have had their lives taken from them by no fault of their own, and to say as much in our communities is completely within our guidelines. But “doctor bashing,” for example, is explicitly outside our guidelines. If you want to grind axes, there are plenty of other places to do so on the internet. Our focus and the principles from which we approach building a culture place priority not so much on what happened to you and who is to blame for it (valid concerns but not useful to build an identity around those grievances), but rather, what are the skills and abilities and gifts that have emerged to cope with whatever has happened, and what good use can those things serve into the future?
Obviously, it’s a tall order, but we think it's worth the trouble. To offer more specificity as to how we think this can be done, I refer readers to ICI’s guiding principles.
Aftab: Thank you, Cooper! I wish you all the best.
This post is part of a series featuring interviews and discussions intended to foster a re-examination of philosophical and scientific debates in the psy-sciences. See prior interviews here.
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One of my greatest powers as a psychiatrist is to gradually remove medication from a regime and watch as the patient recognizes “I guess I didn’t need that” and feel more alive. If I do it very well they say goodbye to me and I consider that the greatest triumph.
People can be helped by use of medications, but frequently they think that continued stability is dependent on the pills. Sometimes it is, sometimes it isn’t. But when it becomes a part of their life that is now stable, they are afraid to remove the scaffolding.
what goes unspoken here, and in Laura Delano‘s book, is that a great deal of this is not just about access to ambiguous resources or support, but, candidly, about money. The kind of real work to come off of and live without psychiatric medications requires both money and the time that money buys. And it may require a family support structure that can provide caregiving assistance—which, again, is about money. it may also require sufficient physical health or, at least, the absence of some other comorbid condition that could be worsened by the neurological effects of withdrawal. Discussions about alternate modes of psychiatric and psychological support have limited relevance to large swaths of the population without acknowledgment of these things. this is to say nothing of the fact that some marginalized people are penalized more harshly for even trying. and personal accounts that don’t touch on these things seem limited, if not a little dishonest.