To Be Agents of Our Own Treatment: Demedicalization at the Heart of the Inner Compass Initiative Conference

I credit Laura Delano for illuminating my deprescribing path. My entire life I fought the view of the disease label.  All who preferred to brand me as a mental patient, I left behind. I was no longer going to listen to the authority—the doctors of the APA. It was during Covid when I gained the courage to try deprescribing again after 27 years of drug dependence, when a nagging numbness, a reaching-the-glass-ceiling feeling overwhelmed me, that I just couldn’t live with anymore. With everyone suffering depression, anxiety, and other mental challenges in that pandemic climate, increasing numbers were joining the ranks of the mentally distressed, which made discussions on the topic more fluid and common. As those with lived experience secretly came together in Zoom rooms across cyberspace in an expanding global community seeking answers with hope for change, I realized if ever there was a time when things might open up for me, it was now. But I needed to be sure of success because I was adamant about never returning to their hospitals to get re-drugged and re-conditioned. In my research on how to do this tapering process the correct way, I came across Laura Delano, who runs the Inner Compass Initiative, and who had been labeled and heavily medicated for years. After suffering her own withdrawal while tapering off the toxins herself, she dedicates her life to helping others deprescribe.

While driving on my way to West Hartford, CT, to Inner Compass Initiative’s first conference, I listened to a conversation between Laura Delano and Robert Whitaker recorded by the annual UK festival, “A Disorder For Everyone” (AD4E), a platform bringing together people who want to see a change in the dominant diagnostic culture, with emphasis on other ways to understand emotional distress than through a medical illness lens. Laura and Bob’s discussion about her new book, Unshrunk, pointed out the unfortunate politicization of our culture around criticizing these failing systems. Laura mentions that people have tried to attack her book by suggesting her story will be used by right-wing fascists to justify cutting services to people. Laura states, “This should not be political. This should be a completely nonpartisan issue. The mental health industry does not discriminate. And yet, it’s become coded here as like a right-wing thing to critique pharma, when 10-15 years ago was actually the opposite.” Bob mentions how the fact that this demedicalization movement is somehow associated with Trump’s administration is a problem for people: “It’s unfortunate because there’s such a valid critique that needs to be told here and the FDA needs to be looking at this. And we need different consent forms, and we need a whole different story to protect people to give them informed consent.”

I love my Dems and I’ll always vote blue, but the party as a whole never did right by psychiatric survivors. They never understood what we were really fighting for. Traditionally, when the blue party was in charge, mental health services were increased, but only that which was considered “appropriate” by the APA. Where did they increase research? Primarily in areas that are in sync with the biomedical model, that the illness is in the individual inside their brains. Under the Clinton Administration, for instance, brain imaging techniques, like magnetoencephalography, were heavily funded with the hope to attain insight on how signals in the brain react differently in individuals experiencing mental illness. President Obama Administration’s BRAIN initiative supported research to develop methods for measuring and understanding the structure and function of the brain. Both research initiatives promised to offer understanding for mental health conditions but never did. In a 2017 interview in Wired, former director of the NIMH, Thomas Insel, who wrote the book, Healing: Our Path from Mental Illness to Mental Health, admitted the failure: “I succeeded at getting lots of cool papers published by cool scientists at fairly large costs—I think $20 billion—I don’t think we moved the needle in reducing suicide, reducing hospitalizations, improving recovery for the tens of millions of people who have mental illness.”

President Biden continued much of what Obama put into place adding a final rule that would ensure mental health care coverage for 175 million Americans on par with their physical health care coverage. But again, only APA approved services in psychiatry and drugs. It’s been generations now of kids that have been told they are defective, that their brains don’t work, that they lack what they need to naturally rely on their own minds.

I had the gift of speaking with Laura at a talk she organized in New York City: “The Science and Art of Coming Off Psychiatric Drugs” on October 7, 2023.  Her compassionate manner was warm and genuine. The talk was held at SoHo Playhouse, a little black box theater on Vandam Street where I had actually bodypainted a few times before. Danish clinical psychologist Dr. Anders Sørensen shared the platform that day delivering the science behind the safest known taper protocols, how to taper as successfully as possible, and the practical strategies needed to free oneself from a “psychiatrized” self-understanding. The audience members seemed to have interest in navigating withdrawal and finding non-pharmaceutical alternatives for mental and emotional struggle but sat with a displeased confusion in their gazes. Many of these good New York City lefties, who were proud to believe in all things science, shared their deep-seated resentment on being duped by the very establishment they most trusted.

Moving forward, I challenge Democrats as the pro-science party, to review the current peer-reviewed studies that are disproving the efficacy and safety of these medications in real-time. Many of the top presenters in this area were here on December 4^th at The Future of Mental Health in America Conference in West Hartford hosted by Inner Compass Initiative. Executive director Cooper Davis outlined the event’s goals—to help patients, families, and clinicians make more informed choices about their care by providing accessible and clear information on psychiatric drugs. Believing people as agents of their own treatment, he stresses informed choice or informed consent in this conversation.

Excited to be in attendance, I look around the audience and spot three activists in this area, who I had the chance to interview for my podcast. To my left and up in front is Dr. Michael Montgomery, an existential psychoanalyst with international expertise in complex trauma and extreme states, who highlights the phenomenon of psychophobia among many mental health workers. To the right is Angie Peacock, former U.S. Army Sergeant and subject of the PBS film, “Medicating Normal,” who was brutally overmedicated after her PTSD diagnosis and is now mobilizing as a mental health system reformer. Seated nearby is psychologist Dr. Roger McFillin, who is strongly committed to the use of evidence-based treatments and still challenges our current failing systems, as the host of the podcast, “Radically Genuine.” All professionals committed to working in this space in a non-pathologizing way and at great cost to themselves. 

It’s why I started my Not As Crazy As You Think podcast. To speak to such people about the fundamental issues that are too often ignored. To be the deliverer of the good news that these illnesses were not what the established medical opinion was trying to convince everyone—lifelong, pathological, genetically determined, unalterable conditions from which no one could recover. To be a voice of change rather than victimization, I needed to take the leap of tapering my medication again. It was a huge risk because I had failed twice before.

Overall, the conference was informative, inspiring and practical. Dr. Anders Sørensen spoke again on clinical deprescribing, stressing that for many, it’s not just about the drug taper, but tapering off an identity. He stresses how one needs to taper off the stories, from “there’s something deeply wrong with me” to “I was having a normal reaction to trauma. I had needs unmet, goals blocked, etc.” It’s learning to redefine emotions not as pathologies but as valid states that move us.

I was always one of those who would have loved to throw away the pills. I never bought in, and I was done waiting for some higher source to intervene on my behalf and prove them all wrong. So, instead, I found a team of support to assist me in the process. The layperson withdrawal community has learned that removing irritants from our bodies before the taper can help the process. For me the Whole 30 worked —reducing inflammation by eliminating ultra processed foods, gluten, alcohol, sugar—others swear by Keto or Intermittent Fasting. Any preparation helps. Deprescribing is dangerous work because you are using yourself to test the paradigm. That’s why there is resistance from the field.

The conference featured a number of great contributors to the demedicalization movement. David Cohen, another doctor I came across in my deprescribing journey whose work in highlighting gaps in reporting psychiatric hospitalization data is well referenced and regarded, traced back along a timeline the evolution of the desirable challenges of the mental health system; and when the field responded to more patient liberty and respect, pushing less authoritarianism and less coercion. Our politics, however, often prevented massive change in patients’ rights.

For instance, Cohen mentions the signing into law by President Jimmy Carter, The Mental Health Systems Act of 1980, which aimed to shift the focus away from large institutional settings towards community-based services and codified a “Patients’ Bill of Rights.” But perceived as an expensive federal mandate, President Reagan repealed the Act just a year after its enactment. By the time President George H. W. Bush declared the Decade of the Brain, “to enhance public awareness of the benefits to be derived from brain research,” DSM IV was medicalizing sadness and direct to consumer advertising began its march.

Bob Whitaker always does a great job reminding the audience that there is no evidence of long-term benefits of psychiatric medication. There are only worse outcomes and more disability. His talk on long-term outcomes began with the question, what does the evidence-based literature say about long-term impact of these drugs, and what is the natural capacity to recover from mental distress? The drug needs to beat that natural capacity. He gives the example of Open Dialogue, the Finnish method of treating psychosis and other mental health disorders involving dialogue and social network, which has made steady progress. At the end of a 5-year study in 1992, 2/3 of its patients were never exposed to anti-psychotics and 80% were working or back to school. Other routes to recovery have been shown to work. This is part of the evidence, which much of the public doesn’t know. If they did, Bob proposes, they would make different choices.

Psychiatrists Joanna Moncrieff and Mark Horowitz, two solid disruptors directly responsible for much of the growing critical attention to the difficulties of deprescribing, are making a lot of progress in the UK in reforming their mental health system, especially in terms of tapering. Moncrieff, who has been writing and speaking about the mythology of chemical cures for decades, shared the pushback on her 2022 umbrella review study when the psychiatric establishment became furious.

It was in the mid-1960s during the recreational drug scene when the idea of imbalances first began. In the 1970s, the NIMH began research on this, which was never published. Joanna states it as a “failed Kuhnian paradigm.” In the late 1980s, benzos were becoming a problem, and then the drug companies conveniently used the “chemical imbalance” idea to push SSRIs. Psychiatrists started to tell themselves and their clients a story—the chemical imbalance story—which helped patients stay on the drugs. When her umbrella study made headlines, they denied they even said it. Then they claimed there actually was evidence, and people in the field said that Moncrieff was untrustworthy, that she and her team were in with the Scientology and gun lobby crowds. “It doesn’t matter,” they said. “Antidepressants work.” But there are clearly different ways to think about emotional problems and treatment. The paradigm needs to change. But as the Kuhnian paradigm shift always requires a replacement, what will it be?

My taper was not only inspired by Laura but also guided by Mark. Psychopharmacologist at King’s College, Mark is credited for developing the Maudsley Deprescribing Guidelines in the UK for people using these drugs for more than a few weeks. Much of the knowledge on deprescribing comes from patients who figured out on their own through trial and error what works, and Mark is trying to consolidate that information into mainstream medical practice. His main contribution is his research on hyperbolic tapering. Based on the Law of Mass Action, he found that the first few milligrams are generally easy to wean off, but the last few can be hell. He came to this work as he deprescribed himself from antidepressants, realizing that generally, drugs that cause withdrawal are not very good for you. He slowly came off the drugs himself and woke up from the slumber.

I started my tapering process in February of 2021. During that time, there was a lot of talk about his upcoming publication on tapering anti-psychotics. Mark was the head author and published the study in The Schizophrenia Bulletin entitled, “A Method for Tapering Antipsychotic Treatment That May Minimize the Risk of Relapse.” When his study came out, I felt elated. This was a chance where some progress had been made, and I could be led by it. While tapering is always risky, it was less so if there were numbers to base the schedule on, along with the right expectations and supports. While research had been done on tapering anti-depressants, no such research had been conducted with anti-psychotics until Mark’s study.

When committing to the taper, we all most wish to avoid withdrawal effects, which range from everything to headaches, to akathisia (terror, restlessness, agitation), to suicidality and can even lead to protracted withdrawal syndrome. It takes months or years for receptors to adapt to a drug no longer being there, creating a “physical dependence,” which then results in withdrawal. A 2017 article put forth in Psychotherapy and Psychosomatics titled, “Anti-Psychotic Induced Dopamine Super Sensitivity Psychosis, Pharmacology Criteria and Therapy” brings to light how this phenomenon occurs. The best way to taper then, is to go slowly—a good taper is reportedly about 10% of the previous month’s dose. Whatever issues arise during that monthly decrease, your body and brain have a chance to re-adapt, giving your brain a chance to heal.

Why are doctors not up to speed on this? Because the research that is given to psychiatrists with notes like “mild and brief” withdrawal effects are only conclusive from short term 6-12 week trials. Most of these drugs are prescribed for an indefinite period of time with no exit plan. And if prescribed to a person labeled with an SMI, it is a lifelong prescription.

Regarding the impact of medicalization on psychiatrists, Mark puts forth that there is coercion for doctors as well. Doctors are more likely to be prosecuted with what is omitted or what they don’t do (not prescribing drugs or hospitalization) rather than commissioning proactive choices. Lots of psychiatrists are reprimanded for not using medication and have pressure to further the system with no friction. Mark says there’s a resistance to these new ideas—in his lectures on deprescribing, as he emphasizes these drugs probably do more harm than good, his audience shrinks from the truth and are overwhelmed with the complication. Joanna also admits that psychiatry works as a system of social control, and forced treatment becomes ok if it’s medicalized: “The patients need the treatment whether they want it or not.” This is not just dishonest but dangerous. Further, she believes psychiatry has gotten less tolerant of alternatives and more defensive to criticism over time.

Thankfully, in the last few years, the UK is leading by example and has achieved setting up “Beyond Pills,” an All-Party Parliamentary group, lobbied for by Public Health of England (their health lobby equivalent to the CDC) calling for guidelines and established research to be done in this area. The National Institute for Health and Care Excellence (NICE), which is a non-departmental public body of the Department of Health in the United Kingdom, put out two guidelines, establishing the principle. A collaborative program between the two groups, The Lived and Professional Experience Advisory Panel for Prescribed Drug Dependence and Nation Health Service England are supporting the social prescribing movement—which is a demedicalized approach to treatment. Mark mentions that it’s clear how behind the USA is in this area, describing its lag in years, decades, and in some ways even centuries.

Angie Peacock spoke on the panel regarding veteran issues, which ultimately affects all laypeople as well. A true purple issue, it’s so clear how this should never have become politicized over time. There were hearings in Congress just the day before, the panel mentioned, regarding the bill that US Republican Senator from Montana, Tim Sheehy proposed called, “Written Informed Consent Act.” The first time a bill to mandate written informed consent for psych drugs has been successfully introduced into the two houses of Congress. The bill calls for informed consent for veterans for all psychotropics. 70% of veterans under VA care are taking psychiatric drugs, and they naturally get trapped in this mess because they are good at listening to authority. The power of consumer groups for veterans have big political capital and 17 national VA groups signed on to support the bill. Angie encourages getting in touch with Congress on these matters because the infrastructure is already there, so the army can change things. We should be asking for mandated prescribing protocol for Vets and laypeople, mandated reporting for adverse reactions, and all low-hanging fruit we can imagine.

Overall, the conference offered me hope. I thought how safe I felt at this event. Many years had passed since I felt scared fighting this system. But because of all this research done by compassionate people in the field, my life was not only safer today, but richer and fuller. The foundations of psychiatry are crumbling as we continue to challenge the assumptions that hold the system together. It’s a hard path but it’s worth it, because we get ourselves back. And yet, the fight is a long one and victories do not come easily. Only a week after the conference, I discovered that on December 2^nd, the Committees on Veterans Affairs, the APA and six other medical associations wrote an opposition letter stating that the Written Informed Consent Bill “risks creating unintended barriers to timely treatment and duplicating existing processes… because psychiatric medications are often initiated under urgent circumstances when veterans are in crisis, at risk of self-harm, or struggling to maintain stability, imposing additional paperwork could delay care at precisely the moment when timely treatment is most critical.” So, it’s a paperwork thing.

As changemaking psychiatrist Javeed Sukhera, who promotes patient choice and wants to transform the paradigm in this area by holding up the mirror of harm to the field, stated at the conference, “Power is intoxicating, and society has institutions that hoard power, where the idea of ‘informed choice’ becomes threatening.” This is a medical ethics situation and a violation of human rights. It should not be controversial. And the loving left needs to understand we are on the same team. Accountable science we want. Challenging these systems is anything but anti-science, and we should be very careful before we lump the psychiatric survivor movement in with fascist lines of reasoning. We are fighting for transparency, accountable science, and for the rights of the common people who are misinformed, as we require informed consent. There is plenty of evidence documenting the harms of these drugs over decades of research. As Bob mentioned in his talk with Laura at AD4E, “people who may be traditionally of the left, who care about their fellow humans, especially the ones who are struggling, have insidiously been led into thinking that if you care about your fellow humans you want to make sure they get treatment. And so, to question treatment in the eyes of so many people is to question care, and they can’t separate the two.”

Today, after 27 years of being on anti-psychotic medication for the treatment of bipolar disorder, I am proudly free from both psych meds and the disease label for 2.5 years after a 2.5-year taper. And I have never felt more stable in my life. To the survivors of such treatment, people who believe the medical narrative don’t feel our voices count because our minds cannot be trusted. Activist Judi Chamberlin in her book, On Our Own: Patient-Controlled Alternatives to the Mental Health System, in the 1999 introduction, writes:

“…it has become even more firmly a part of the conventional wisdom that people with these diagnoses are incapable of knowing their own needs, and should be dealt with through laws that make it easier to force people into treatment. The fact that we may have good reasons for wanting to avoid treatment, including the existence of severe (and sometimes life-threatening) “side” effects of psychiatric drugs, and previous bad experiences with treatment, is ignored, and our refusal is seen as only further evidence of the necessity of force.”

The question is, we are keeping the story intact for who exactly?