Process
Status Items Output None Questions None Claims None Highlights Done See section below
Highlights
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“Holding multiple truths. Knowing that everyone has their own accurate view of the way things are.”
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“Something has gone wrong in contemporary academic and clinical psychiatry,” a 2019 lead opinion piece in The New England Journal of Medicine stated. “We are facing the stark limitations of biologic treatments,” it argued. “There is no comprehensive biologic understanding of either the causes or the treatments of psychiatric disorders.”
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“Practitioners cannot put their expertise above the expertise and experience of those they’re trying to support.”
✏️ This happens in everything, including governments making policies that affect people they never talk to
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a singular focus on reducing symptoms, a professional mind-set that leaves people feeling that they are seen as checklists of diagnostic criteria, not as human beings
✏️ the key issue.. only addressing the symptoms because to us the public it “looks” bad and abnormal. As long as things are perceived to look normal, we don’t care about the underlying and inner issues. This happens across the board (e.g. think about our views on sex, beauty, mainstream normalcy, and so on)
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“The widespread belief by many in the health sector that people with a mental-health condition have a brain defect or disorder of the brain,” Funk added, “so easily leads to overwhelming disempowerment, loss of identity, loss of hope, self-stigma and isolation.”
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Priorities common to the 22 are combating alienation, moving “beyond the biomedical model” that puts “psychotropic drugs at the center” and replacing “the language of diagnoses” with an emphatic embrace of “human diversity.”
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a staff member asked Mazel-Carlton what would help her. As she related this moment to me, the memory of the simple, genuine question moved her to tears, because she felt fully entrusted with knowing what she needed, something that seldom happens with those engulfed in their own realities; their perception is presumed to be too warped.
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“I feel like I want to die every day. It’s one of the first things I think about when I wake up. That is normal for me. Many people act like it isn’t normal. Here, we have people express that they want to harm someone. These are all normal thoughts. But people train themselves to believe that they’re not. Giving space to express these things, to have these conversations, that’s the healing thing, that’s the magic here. When we don’t allow that space, things get bigger.”
✏️ No one has this. So much is bottled up and so much is taught as inappropriate or shouldn’t be said. A safe space with no judgement is unheard of, but what if it were available? What if a person could have such an outlet, to give themselves that sense of being heard, of being relieved?
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There’s power in feeling able to talk and feeling truly heard, in not feeling alone. But for other people, it’s transformative.”
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Mazel-Carlton’s motto is, “If I’m controlling, I’m not connecting” — and connection, for her, is everything. It defines hope.
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This particular group focuses on the spiritual, a common theme for people with voices and visions. At the outset, Mazel-Carlton invited everyone to open up by reminding: “This is where I can go if I have direct experiences of the divine. It’s a place I can go, if I’m someone with a psychiatric label, to talk about spirituality without having my experience pathologized. We validate one another here.”
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H.V.N. principle
✏️ learn more about HVN (Hearing Voices Network) principles
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One woman, a mother, told Mazel-Carlton that a voice was commanding that she cut off her hand; if she didn’t, the voice would harm her child. Mazel-Carlton listened and eventually wondered aloud to the woman what the voice might be straining to communicate beneath its horrifying terms. She drew her into thinking about the voice’s underlying meaning, that it could be expressing something about the pressures and conflicts of motherhood, especially during Covid, how caring for a child sometimes feels like a commandment to give up too much of oneself.
✏️ This is tough to read and comprehend. What’s the right path here? There’s danger here and you want to believe that what you do to help is the thing that does actually help, because the alternative is that what you do/don’t do leads to someone getting hurt or dead. Oof, this is conflicting.
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“As human beings,” Mazel-Carlton said later, “we are drawn to meaning; it gives us a sense of power. But to get there, you can’t feel only that the voice is scary. And to do this work, you have to get past your own fears.”
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“When she died, there were people in our community who talked about how they should have done more,” Mazel-Carlton said. “But here’s the reality. As long as our wider world is deeply marginalizing of neurodiversity, we are going to lose people.”
✏️ This is a thing to remember and in relation to my conflicted feelings earlier. It can be easy to poo-poo new methods, especially when they buck the norm, introduce weird new ways, and then don’t always succeed. When they don’t succeed, we want to be vindicated (but actually just vindictive) by saying, “See? That’s what you get for not doing it how it’s always been done. That was dangerous and reckless and the whole thing is a sham.” It’s not always a sham. And the old ways aren’t exactly clean and bloodless either. The issue is that we acclimated and got used to the way it’s always been, and more likely we’re not exposed to its ravages on a daily basis, so we assume it’s just normalized and how it is. When a new method works but also fails sometimes, it’s not being given the leeway that’s given to the old ways. If anything, the new way is at a huge disadvantage because the systems in place are stacking things so heavily, and could already be causing 90% of the damage, so when a failure happens on the new way’s method, we don’t attribute the blame to the systems in place that indirectly caused it.
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He was inspired by a book about the Soteria origin story by Loren Mosher, a former head of schizophrenia research at the N.I.M.H., who was appalled by psychiatry’s heavy reliance on antipsychotics. He established a pair of treatment houses in the Bay Area in the 1970s that minimized medication and prioritized two words, “being with,” as the main treatment philosophy.
✏️ alternative method Clinicians are present but sidelined, hierarchies of knowledge are banished, medication is a secondary option, mostly to be avoided unless residents arrive already on drug regimens, and “being with” is carried out above all by melavim, companions — paid interns whose ameliorative mission is simply to be engaged, empathetic and curious, to leave residents feeling less alien, less alone.
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“If someone becomes intimidating,” Lichtenberg said, “I’ll sometimes put my hands behind my back, look him in the eyes and tell him, ‘If you want to attack me, it’s going to be so easy for you.’”
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Avraham Friedlander, a former director of Lichtenberg’s first house, told me about a resident who, on the man’s first day, interrupted a group meeting in the living room. He splintered a darbuka, a Middle Eastern drum, and began to dance aggressively. In response, Friedlander joined him in the middle of the group, dancing wildly. “Everybody made a drumbeat with their feet, stomping, and we fought in a choreographed way, a dance-fight,” Friedlander said. “He grabbed me; he put me on the floor; but I wasn’t hurt; and later we talked. He was asking what was happening to his mind. He was crying. I slept near him that night, and when he woke with nightmares, I sang him songs and gave him tea.”
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while those with hallucinations and delusions are probably disproportionately prone to violence, this pattern largely disappears when researchers control for factors like poverty, homelessness and substance abuse. Those may be the more relevant drivers. Data also indicates that people diagnosed with psychosis are less likely to be perpetrators of violence than they are to be its victims.
✏️ busting stereotypes
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Mathai told me a parable about a traveler in a foreign land coming across a bird he has never seen before, a peacock. Thinking that such a freakish creature will never survive, the traveler cuts off its feathers to correct nature’s error.
✏️ quick little parable to put things in perspective about what’s normal.
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It is, he said, “about understanding them and their intentions, so that we can live in harmony; it’s about relationship management.
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The woman’s grown son believed he was taking directions from God. In the recent past, he had been hospitalized, suicidal, homeless. “He thinks he’s kind of like a savior,” she told Mazel-Carlton. His ever-changing plans terrified her. “I need to know how to talk to him. I don’t want to say the wrong thing. I’m trying to just be there, to be empathetic.”She knew Mazel-Carlton’s lessons well, and quietly, Mazel-Carlton echoed and encouraged her.“But I don’t know how to get him to understand that I’m on his side. He’s very turned off to the mental-health system. He told me I put him in the hospital. I said it wasn’t me, it was the psychiatrist. I know he’s going to do what he’s going to do, I know I can’t prevent it, but he says he was comfortable being homeless, because no one could tell him anything — and now what if he becomes homeless again? He could be killed, God forbid.”“I’m not putting this on you,” Mazel-Carlton said, “but it sounds like he’s had some institutional trauma. So what I might avoid is bringing things up from a mental-health lens.”“I think about the M-word,” she said, talking about medication. “But I don’t say it.”“I think that’s wise.”“I can’t help it.”“I think it’s good that you don’t go there,” Mazel-Carlton said. “Pharmaceuticals are easily accessible — he knows that. He knows he can make that choice anytime. When a mom brings up medication, it can sound like, I don’t like the way you are. Like, the way you are makes me uncomfortable.”“I’m freaking out.”“As adults, the moments when we feel that our parents trust us — that’s the lottery-like feeling,” Mazel-Carlton said.“To let him be who he is,” the mother said. “Not to get in his face. I’m really working on it.”“I know you are.”
✏️ good dialogue