Filling the Crack in the Liberty Bell

Philadelphia is a city marked by incongruity, a quixotic city, a city glutted with symbols, and it is perhaps fitting that, here, the US branch of the International Society for Psychological and Social Approaches to Psychosis (ISPS-US), with all its contradictions, recently hosted its 17th annual conference.

The culture of Philly, too, is fitting. It is the subject of an absurdist play by David Ives, in which a character must ask for the exact opposite of what he wants; it is marked by the paranoid conspiracy-theory-bait “Toynbee Tiles” that have mysteriously appeared in its streets since the ‘80s; and it is famous for its divisive food, the cheesesteak, which you either love, or love to hate.

And it is here that the massive, cracked Liberty Bell resides, and it is this iconic image that the ISPS-US leadership chose to represent their conference this month. Their hope was that this image would symbolize the current state of mental health care for those struggling with psychotic experiences, and it did—but perhaps not always in the ways the leadership intended.

Indeed, the ISPS-US organization holds two main constituencies, who reside on opposite sides of a wide ideological divide. This schism separates those with lived experience of altered states from those who are treatment professionals.

The divide could be reduced to one question: are people who have experienced altered states “suffering” from mental disease, as many treatment providers believe? Or do people simply have varying differences in perception and expression, on a wide spectrum—and is it an abusive social order that ostracizes or destroys those who exist too distant from some valued norm?

That is, do mental health professionals need to improve their “treatments?” Or does society need to become more accepting of those experiencing altered states?

Although this ideological rift was sometimes contentious, it was almost always respectful and communicative. The true content of this conference, according to some of the attendees, existed in the margins, in the question-and-answer sessions rather than the presentations themselves. It was during this time that psychiatrists and psychologists might find themselves being challenged about their assumptions by people with lived experience—usually politely, and with reasoned arguments rooted in their personal experience.

Perhaps some of the conference attendees, those with lived experience, would have preferred another Philadelphia icon—fictional pugilist Rocky Balboa, whose bronze statue stands at the base of the Art Museum steps. After all, the message of that film set in Philadelphia is that the struggle itself—the struggle of the underdog against an established foe—provides meaning. You may not win that fight, but there is honor and victory enough in the willingness to defy the established foe and the stamina to go the full 15 rounds.

A Clash in Perspectives

The two sides of the clash were clearly seen after one psychiatrist, Irene Hurford, MD, presented on an “ethical dilemma.” She elaborated on the details of an adolescent boy with delusional beliefs whom she saw in her practice; this young man, with a history of familial abuse and neglect, eventually discontinued his medication after the failure of his grandmother to pick up the medication for him—at which point he no longer wished to be taking the medication, and increasingly seemed to be experiencing delusions of Armageddon. After this vivid presentation, in which Hurford expressed empathy and understanding for the complexities of this child’s experience, Hurford then framed her question around whether she should forcibly medicate this child. She spoke of his becoming a “different person,” his “lack of agency,” how he could not make a decision for himself anymore because he was experiencing an altered state.

This moment is emblematic of the conventional argument in psychiatry—the idea that an “expert” can observe when a person can no longer make “free” choices, at which point they may conclude that they do not need to listen or connect with that person any longer. The person is not in his or her “right mind,” and thus the “expert” may violate the person’s autonomy by forcibly hospitalizing or medicating them. The conventional argument is that this is done in order to restore the person to his or her “right mind,” and that may be seen by the expert as happening when the person has “more acceptable” thoughts and feelings.

Hurford’s presentation was quickly challenged by many attendees in the audience. “Stop having an agenda and defending it to the hilt,” suggested one attendee. Attendees decried the sense of “urgency” and suggested that Hurford might have patience and continue trying to connect with the child, continue trying to understand the child’s experience. Instead of taking away any shred of agency, suggested the attendees, Hurford might approach with curiosity, investigating the importance of the child’s delusions; investigating the failure of the grandmother to provide care; investigating the child’s dreams and aspirations—and joining with the child in working toward those goals.

Attendees suggested that Hurford look to the Open Dialogue approach made famous in Finland and elsewhere, which focuses on creating a holding, affirming environment for people experiencing altered states, and which relies on family and community intervention to reconnect individuals to others in their lives. Hurford dismissed this idea as too expensive. Likewise, another attendee noted that many other cultures have far better outcomes for people with psychosis than the US. “So you’re saying send him to a third world country?” Hurford replied. The attendee suggested that learning from approaches that work might be a better alternative.

After the speech, attendees to whom I spoke discussed their hopes that Hurford had listened to their critiques and praised her for being open enough to engage with the questions raised by the audience.

The keynote address the next day by Berta Britz, CPS, MSW, provided a counterpoint to Hurford’s plenary presentation. Speaking from her personal experience, Britz said that the psychiatric establishment “tried to teach me that my experience was behavior to be changed” and that “experts considered me a passive recipient, not a full human being with agency.”

“They destroyed opportunities to be curious,” she said. “My fear was met with their fear.”

This theme was repeated again and again by the attendees with lived experience. “I just wanted to connect,” said one attendee. “I was trying to communicate my intense pain,” said another. Theirs was a pain so intense that it could not be communicated with language; it could only be communicated through the code of psychosis. Over and over, attendees suggested that treatment providers listen and connect with people experiencing altered states, rather than try to “fix” or “treat” them.

The Meaning in Altered States

The conventional belief in mainstream psychiatry was summed up by one parent of a child with delusions, who said, “the psychiatrist told me that they were just gibberish and I should ignore them.”

However, this attitude was completely at odds with everything I heard from people with lived experience of altered states. Over and over, I heard that delusions, hallucinations, paranoia, all the “symptoms” of psychosis, are ways of communicating intense pain, and intense need.

At the same time as Aaron Beck, MD, the 97-year-old founder of cognitive therapy, was speaking about the history of cognitive therapy to a room full of mostly treatment professionals, something dramatically different was happening in another room at the conference. A slender, turquoise-clad woman was performing a one-person show about the experience of psychosis to a group mostly comprised of other people with lived experience. The writer/performer was Erin Soros, PhD, a noted Canadian author and academic, who has had her own lived experience of altered states. The text of the performance she gave is available in a book of non-fiction, and a video is forthcoming in the video archives of the Insurgent Architects’ House for Creative Writing at the University of Calgary.

Soros’ performance captured and explored the “disorganized speech” that is an emblematic “symptom” of psychotic states. As her narrative became more stream-of-consciousness, the language itself was deconstructed and re-constructed. However, rather than “nonsense” or “gibberish,” this re-constructed language crystallized into a deep poetry, expressing layers of meaning that could not be communicated through the use of regular narrative language.

In a discussion after the performance, Soros said that her altered state had been full of meaning, and that if mental health professionals had been curious, they might have made sense of what she was communicating. For instance, her obsession with the date of December 6 was taken as meaningless by her mental health providers in a UK hospital; however, in Canada this date has been memorialized as the National Day of Remembrance and Action on Violence Against Women. On that date in 1989, a male student murdered fourteen women and injured ten others in a horrific act of violence in Montreal. Soros says that her providers could have investigated her obsession with this date, and the way she was attempting to communicate the trauma she had endured at the hands of men in her life.

She wonders what else was missed in the failure of mental health professionals to be curious about the meaning of psychotic experiences. “I was on the ward with people from Rwanda and the Congo, for example—I wonder what went unheard in their associations.”

Soros also said that the particular delusion she experienced—that she was going to meet her friends and family at her wedding—was a way to communicate the desperate need for connection and love she was experiencing. Perhaps an approach like Open Dialogue, which brings family and friends together to connect with someone experiencing altered states, might have been a far more restorative experience than being forcibly hospitalized by strangers and chemically restrained. If psychosis is an experience of isolation, of disconnection, perhaps that sort of approach is exactly what is needed for healing.

Two Approaches

This theme was epitomized by two distinct approaches to working with people experiencing altered states. The first, known as recovery-oriented cognitive therapy (CT-R), grew out of Aaron Beck’s cognitive therapy of the 1960s, and is an empirically-validated “treatment” for psychosis. As such, it operates on the basic assumption that altered states are a problem, an abnormality to be treated, and that there are particular interventions to “treat” this condition. The other approach is called emotional CPR (e-CPR) and grew out of the experiences of people with lived experience of altered states. This approach was presented as an authentic way to connect with human beings—for which healing was the side effect.

A concise way to delineate these two approaches:

• CT-R: There is a problem in this person, how do we fix it?
• e-CPR: There is a person, how do we connect?

The Current State of Cognitive Therapy

Aaron Beck looks like the elderly Roman emperor Tiberius, with short-cropped white hair and the charisma and authority due to him as the founder of mainstream cognitive therapy. With him were two of his protégés, Paul Grant, PhD, and Ellen Inverso, PsyD. Beck’s famous dry wit was undiminished, and he shone with authenticity. He spoke about the mainstream establishment of psychiatry as it was when he was a resident—a time when lobotomies were still considered “helping” people experiencing altered states.

Beck sees himself as something of a revolutionary for his cognitive therapy, which was one of the interventions making therapy a legitimate contender for “treatment” of “brain” disorders. However, at the time, he considered it useless for people with psychotic disorders.

In the early 1960s, when Beck began publishing his theories on cognition, psychoanalysis was the mainstream therapy. In psychoanalysis, psychotic experiences are viewed similarly to dreams—experiences that represent the deepest pains and desires a human can express. Psychoanalysis is, then, at its core, a witnessing—an attempt to hear the message beneath the symbol—which seems to be what the attendees here were craving.

At the same time, two other dovetailed approaches to mental health were also flourishing. In the early 1950s, Carl Rogers had already developed “humanistic therapy,” based on the belief that the only prerequisite for healing was the true witnessing of the authentic person. And the existentialists—led primarily by Viktor Frankl, whose work emerged from his experiences in a concentration camp during the second World War—straddled the line between humanistic and psychoanalytic approaches. They suggested that the individual’s awareness of existential pain, when communicated in authenticity, could relieve suffering, while the suppression of existential truths caused the symptoms of most “mental illness.”

In the context of those cultures of therapy, Beck’s cognitive therapy today feels almost regressive. He believed that people struggled because they had maladaptive—incorrect—cognitions. Their very thoughts were wrong, and only an outside observer—e.g. the therapist—could effectively contradict the experiences of his patients, and teach them how to think correctly.

Perhaps Beck’s reluctance to work with people experiencing psychosis came from their resistance to this form of therapy, which required that they should let a therapist tell them what they should feel, how they should think.

Intriguingly, recovery-oriented cognitive therapy is in some ways a walk-back of cognitive therapy’s differences from the other approaches of the 1960s. Grant and Inverso, in their plenary, described it as focused on experiencing a sense of purpose and meaning, moving people toward their aspirations. They even portrayed their therapy as closest in nature to that of Viktor Frankl, famed author of “Man’s Search for Meaning” and inventor of the existential therapy he called “logotherapy.”

But in the specifics of their assumptions, their intervention was still heavily inflected with Beck’s views. After all, their work is still a “treatment” for the “problem” of psychosis. Their belief is that warmth, human connection, meaning, and purpose are motivating factors that serve to “treat” the underlying “dysfunction” of altered states. Their dichotomous framing of altered states, it seems, leaves little room for the spiritual experiences, the encounters with the self, the communication, the symbols beneath the delusions. Instead, all of these are “symptoms” of a disorder.

e-CPR

The approach of emotional CPR, on the other hand, is truer to the assumptions of existential-humanistic therapies. E-CPR, although technically an intervention to be taught, is at its heart a way of being. Oryx Cohen, MPA, demonstrated the approach at the conference.

The core belief of e-CPR is that connecting with and empowering individuals heals emotional crises. Cohen demonstrated how to be with a person experiencing an emotional crisis, how to communicate—non-verbally—an authentic openness and curiosity without an urgency to “fix” that emotional state. Cohen demonstrated giving the other person the agency to decide what they needed, whether it was to experience that emotion or to calm themselves down. I was struck by the authenticity and compassion that Cohen emanated; a feeling of immense safety and connection that seemed restorative throughout the room.

E-CPR takes the premise that emotional crises are universal experiences existing on a spectrum. Certainly, psychotic experiences can be seen as extreme states, especially at their most intense. However, research tells us that hallucinations and delusions, paranoia, and withdrawn affect are all more common than we’d perhaps like to believe. Many people experience slight altered states which do not necessarily presage an eventual crisis.

It’s notable that e-CPR was created by a number of people with lived experience of altered states, crafting the intervention they wish that they’d been able to have. Contrast that with cognitive therapy’s basis in mental health professionals conducting “efficacy research” on people labeled as schizophrenic.

The premise of e-CPR is supported in the scientific literature. Research on the common factors model of psychotherapy has found that empathy and connection (often framed as the “therapeutic relationship” or patient-therapist “fit”) are part of every successful therapeutic “technique.” Researchers in common factors report that it may not be the specific “techniques” of various therapies that are effective, but instead these unifying elements of empathy, connection, validation of emotional states, and expectancy of improvement (or hope).

E-CPR serves to codify these common factors into an approach. It is a powerful melding of lived experience and scientific research into an approach that could be used therapeutically.

Approaches like e-CPR unified treatment providers with those with lived experience. It was in these moments that the conference appeared to thrive. Instead of an echo-chamber conference, in which treatment “experts” present to other treatment providers, and those with lived experience gather in their own rooms, the ISPS-US conference allowed for the clash of diverse opinions, which could sometimes amalgamate into something greater than the sum of its parts.

The chair of the program committee, Mark Richardson, PsyD, said that his intention was to create a space in which people with lived experience of altered states and treatment providers could connect, and thus where treatment providers could learn from those who have experienced “treatment.”

In this regard, the conference seemed to be an unmitigated success. Both ideological groups were presenting, asking questions of each other, listening to each other. The hopes, on either side, seemed to be that this is the space where change can happen. And here, at the ISPS conference, the treatment providers, the psychologists and psychiatrists, seemed to be listening with curiosity—just as those with lived experience of altered states advised.

And thus the conference could be said to be filling the crack in the liberty bell: It was helping to heal the rift between mental health treatment professionals and people with lived experiences of altered states.