In honor of 7/10: a special piece on a particular psychiatrist who helped catalyst alternative thinking within the psychiatric system. July 10th was the 13th anniversary of his death. He was also one of many sporadic voices focusing a harsh light on the cracks in the dam of the system, particular the APA of which he was a board member for 35 years. In his resignation letter on December 4, 1998, he stated clearly the truth:
“Unfortunately, the APA reflects, and reinforces, in word and deed, our drug dependent society. . . at this point in history, in my view, psychiatry has been almost completely bought out by the drug companies. The APA could not continue without the pharmaceutical company support . . .”
He had a few choice words about the organization NAMI.
“In addition, the APA has entered into an unholy alliance with NAMI (I don’t remember the members being asked if they supported such an organization) such that the two organizations have adopted similar public belief systems about the nature of madness. . . NAMI, with tacit APA approval, has set out a pro-neuroleptic drug and easy commitment-institutionalization agenda to move forward. . .”
And of course, his words on the DSM:
“And finally, why does the APA pretend to know more than it does? DSM IV is the fabrication upon which psychiatry seeks acceptance by medicine in general. Insiders know it is more a political than scientific document . . .”
We’re talking, of course, about Loren R. Mosher, M.D. If you’d like to read his letter of resignation, you can click here. It’s fairly short, but highly powerful. He speaks on the fact that there is no damning or solid evidence to support that any “mental illness”, particularly schizophrenia, is a “brain disease”–which still holds true to this day. The studies conducted on the flow of neurotransmitters during “active” phases have two invalidating, but obvious, issues:
- In early experiments, people were on neuroleptics. That obviously effects neurotransmitters. Invalid.
- We have nothing to compare this to: the so-called “decreased white matter” or “increased dopamine” could be a result of so many things, including years of antipsychotics, and without tracing this person and their exact brain chemistry since fetal development and birth, without having a clear image of their brain chemistry before the onset of their experiences, there’s no possible way you can conclude, and be valid in your conclusion, that those two observations are the result of a “disease”. INVALID. INVALID. INVALID.
Mosher felt the acceptance of schizophrenia as a “disease” was essentially just a function of “fashion, politics, and money”.
Don’t feel invalidated by that, because he’s not invalidating individual experiences here, he’s invalidating the economic leverage organizations like the APA or NAMI or Big Pharma receive from promoting this idea of “brain disease”, by publishing weak data the public would never notice if they didn’t take five psychology research courses in college. How many of us with mental health issues have taken five psychology research course in college, including behavioral statistics? How many of us, when we read a research paper, really know what we’re reading?
Many of us never read the actual paper, we only read what’s been reiterated in other articles. That’s like playing that game “telephone” when you were a kid: whispering different phrases in each other’s ear and when the last person says what they heard, it’s never what the first person said. That’s exactly what this is like.
Mosher didn’t just run around spewing “psychiatry is a lie! You’re being dooped!” with a sign on his chest saying “THE END IS NEAR” and a tin foil hat. He was born in Monterey California, obtained his first degree from Stanford and his medical degree from Harvard where he received his psychiatric training. To me, that means nothing. What he went and did with it, I respect.
He visited Kingsley Hall in England (more on THAT in a different article), learned what he could, skeptical of the level of support, returned to the U.S and became the first chief of the NIMH Centre for Schizophrenia studies. Within those years, inspired by many past theories, philosophies, and attempts, Soteria Project started.
This wasn’t your average experiment. This wasn’t 30 days with a few questions, a sugar pill, and a checkmark by your name. This was a lengthy study, and the community stayed open from 1971-1983, with a two year follow up, and not-so shocking results–depending on who is reading the research.
Here’s a quick overview of the project.
In order to be apart of this experiment, one needed to meet certain requirements:
- A diagnosis, by 3 individual clinicians, of schizophrenia (based on the DSM 2).
- Deemed in need of hospitalization.
- At least 4 of 7 Bleulerian diagnostic symptoms (explained below) by 2 independent clinicians.
- Not more than ONE hospitalization for 30 days or less.
- Ages 18-30
- Marital Status: Single
Bleulerian symptoms: “autism”, in this way meaning a withdrawal from reality into fantasy, and affect (flattened, inappropriate), associations (loose ones), and ambivalence (mixed/contradictory feelings). Hallucinations–mostly voices, thought broadcasting, somatic mix-ups (believing someone else is imposing something on your body), delusions–all those kinds of fun things.
The purpose of the age and the hospitalization requirement wasn’t to exclude old people, it was so the project could hold some validity: the individuals taking part needed to have never been drowned in the system, or muddied up with medication. For comparison, Soteria was running up against traditional hospital treatments: confinement, involuntary medication, involuntary isolation, and stigma.
Mosher describes Soteria as follows:
“. . . a 24 hour a day application of interpersonal phenomenologic interventions by a nonprofessional staff, usually without neuroleptic drug treatment, in the context of a small, homelike, quiet, supportive, protective, and tolerant social environment. The core practice of interpersonal phenomenology focuses on the development of a non-intrusive, noncontrolling, but actively empathetic relationship with the psychotic person without having to do anything explicitly theraputic or controlling.”
The key word here, being empathetic. Not sympathetic. Not pity.
Well, there are several key words. Nonintrusive. Noncontrolling. Homelike. Supportive. Not things you usually associate with a mental health facility.
In his words, he describes the role of these “nonprofessionals” as someone who is “standing by attentively”, or “being with [the person]”, or “stepping into the other person’s shoes”. If anything, the point of the staff was to “develop a shared experience of the meaningfulness the client’s individual social context, current and historical”.
They took a bunch of psychology graduates in their mid twenties, and stuck them in an environment with people aged 18-30 who were actively “psychotic”. That’s the bottom line. There was no medication intervention. A psychiatrist stood by as peripheral, but he never was involved in treatment or decisions. He was kind of like a mannequin with eyes that blinked–that’s about as useful as he needed to be.
For many individuals, it took 4-6 weeks for their lucidity to break through and they were able to have conversations about where they wished to go next, what they wished to do, and built a plan around that with staff.
“Subjects” stayed for 5 months. The control subjects who were in for hospital admission stayed 1 month. Regardless of that difference, the cost for “treatment” was the same for both: around 4,000 dollars each.
The first six weeks there was marked improvement in communication, focus, and wellbeing, regardless of the lack of neuroleptics. After the two year follow up, only 3% of those from Soteria were maintained on medication. Compared to the control levels from the hospital, those at Soteria during the years 1971-1976 two years postadmission had higher level jobs, lived independently or with peers, and had fewer re-admissions.
There were two other Soteria-like programs built: Emanon and Crossing Roads. Crossing roads included clinical staff, medication, and a shorter more “motivation” focused stay: helping people prepare for life in society. You can read the compare and contrast in that straight from the source, linked below.
In order for programs like this to work as well as they did in his study, Mosher developed some guidelines:
- The setting needs to interact with the community and be indistinguishable from the community (I.e, a house on a block in a neighborhood).
- A small space, fitting about 6-10 people and admission must be informal and thoughtful of the person’s mental state.
- The staff isn’t there to bombard or control. They must be willing to understand “immediate circumstances and relevant background that precipitated the crisis”. This is what fosters the relationship and connection that allows staff to step into the other person’s shoes and support them in preparing for the social world.
- The relationship has the staff in multiple roles: companion, advocate, case worker, and therapist–without the therapy part. They make on the spot decisions, but include the “client” in the decision. The staff use this as a way to gain leverage in their field when they pursue higher mental health related degrees, and often have an interest in working with those in psychotic crisis. They are usually “psychologically tough, tolerant, and flexible” from lower middle class families with a “problem” member. MD’s are not in charge of the program.
- Staff prevent dependency and encourage “clients” to remain in contact with support networks. Clients may report feeling in control of themselves, and full with a sense of security.
- Access and departure is easy. Other than readmission, the clients have other means of staying in contact with the program: drop in visits, advice, or support over the phone. All clients are welcomed back once a week for an organized activity.
As a result, those who participated in this program remained socially involved, aware of the support THEY needed, rather than the support being shoved down their throat. They were given a sense of community, developed a sense of self, and that’s when the programs were shut down due to lack of funding.
Insurance companies and HMO’s refused to pay for something cheaper than hospitalizations, that promoted well-being and self-sufficiency without medication. Not to mention backed by extensive research, of which most hospital procedures and models do not have. They never will.
What Mosher created was a Respite.
What we’ve further developed, upon the same principals with much amendment, are Peer Respites. However few and scattered they are, they exist, still with no big funding from major corporations or companies, nothing that would secure their existence as hospital’s have.
Rather than staff who have graduated with psychology degrees, Peer Respites are staffed with Peers: people who have swam in the deep pool of depression or swung high in the throws of Mania or slapped on that infamous tin foil hat to keep out the aliens. Whatever. I’ve never put Tin foil on my head, but I have wrapped myself in clear packaging tape to keep demons from scratching my skin. Close enough, right?
It didn’t work, by the way. I’m assuming the tin foil doesn’t keep out the aliens either, so I won’t try it. If aliens want my brainwaves, they can have them as long as they make me really good at math and whisper answers to me during tests.
Mini-Tangent over. I’ve forgotten what we were talking about.
Peer Respites. Not staffed by graduates, still not headed by MD’s, and still a community of quiet, supportive, community-based experiences. I have no clue how other’s are run, but the one I’m apart of has groups, outings (beach, hiking, whatever), trainings (for us), and a WarmLine: a phone number to call when you’re in need of support. It’s all very Soteria-esque, and also very modern. It gives those of us who are fortunate enough to “work” there a purpose, and a chance to be involved. Sometimes that means no more reliability upon disability checks. That’s huge.
Independence is encouraged: cook your own meals, wash your dishes, do what you need to during the day, call if you’re out late. We do meals together as well, everyone chips in–as much as some can–and no one is chastised if they can’t. Encouraged maybe, but never chastised. Humanity is a thing here, you see. A pretty big thing.
The wording as changed. For us, no one is a client: we have guests. We’re a house on a street in a neighborhood. We’re voluntary and self-referred. There’s no diagnosis, we don’t hand out medication, and we don’t judge if you’re on it or not.
The idea that humanity, kindness, and understanding is enough to support even the most “psychotic” person isn’t a new idea, you see. It’s just not one supported by the APA or Big Pharma. Most clinicians I’ve spoken with have never heard of such a thing, so it’s not spoken about in training, courses, or conferences unless those trainings, courses, and conferences are solely focused on Peer Support. Once again, not supported by the APA or Big Pharma. Can you think of any reasons why? I can think of a few dozen.
Were something specifically like Soteria to come back, it would be a game changer. To remove this idea that because you’re struggling, you need to be confined for your own safety and the safety of others only perpetuates this idea we’re violent, out of control, and unable to function in society. Not only does it send that message to the public, but it sends it to ourselves as well. And when we believe it, it comes true.
To direct people in crisis away from the system before they ever really become in contact with it, staffed and run by peers–that’s a dream in the making. That’s a recreation of Soteria. That’s a hybrid of Peer Respite. That would take a lot of funding. That’s been a goal of mine since I was 15. It’s been a passion since I learned Peer Respites still exist, and that the idea didn’t die with Soteria’s funding crisis.
It’s amazing what a little compassion can transform.
Links & Sources: