Soteria, Peer Respites, and The Future.

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:

  1. In early experiments, people were on neuroleptics. That obviously effects neurotransmitters. Invalid.
  2. 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.

Requirements:

In order to be apart of this experiment, one needed to meet certain requirements:

  1. A diagnosis, by 3 individual clinicians, of schizophrenia (based on the DSM 2).
  2. Deemed in need of hospitalization.
  3. At least 4 of 7 Bleulerian diagnostic symptoms (explained below) by 2 independent clinicians.
  4. Not more than ONE hospitalization for 30 days or less.
  5. Ages 18-30
  6. 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.

The Experiment:

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.

Results:

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:

  1. The setting needs to interact with the community and be indistinguishable from the community (I.e, a house on a block in a neighborhood).
  2. A small space, fitting about 6-10 people and admission must be informal and thoughtful of the person’s mental state.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

Conclusion:

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:

Soteria Review/explanation By Mosher

Bleurian Terminology and what schizophrenia was classified by

Mosher

Resignation letter (in case you missed it)

R.D Laing (Kingsley Hall)

A push against Psychiatry

The Peer Movement

MI, DSM, IPS, and Surströmming

motivational_interviewing_dvd

This week I’ve been apart of a Motivational Interviewing training, and as I do with all my trainings and classes I take that stand out to me, I’m going to share the experience. Tomorrow is the last training day, but I’m going to end up having to leave a couple hours early, so since today was my last full day I decided it would be a good idea to share what I’ve learned.

If you have no clue what I’m talking about, don’t worry, I didn’t know what the fuck it was either. All I know was that for me and my coworker it was free, and you can never get too much training in human services.

It’s actually not really about interviewing, but it is. I feel when people see the word interviewing they immediately think about that one job they went in to get where the woman with the bright red lipstick and the blonde hair asks you to sit in front of her as she rolls off your basic “what are you strengths, what are your weaknesses, tell me about a time when you accomplished something, tell me your mother’s father’s, mother’s maiden name and sign here at the dotted line to say you consent in giving me your first born child’s left leg.”

hqdefaultMI is more of a form of communication. You stray away from too many questions because too many questions turns into Motivational Interrogation, and people who are struggling don’t need to be interrogated. MI focuses on encouragement and affirmation with the aim of guiding someone towards change. The belief here, which is the most important part as I see it, is that everyone has the capability to change what they want to change, that everyone has choice, and when we’re stuck sometimes we just need a little compassion to help us see our choices again.

It’s also about focus. You all know my focus is shit, so you could imagine my grief in training myself to not wander off or black out during role plays. But, I learned when I did focus in all my energy in listening to the words someone was saying, so I could “reflect” back what they were saying, I found I was interested enough in what the person was saying to keep my attention.

I still hate Role Plays though. Nothing will ever change that. They were created by the devil.

By reflecting, I essentially mean interpreting–in a sense. For example, one guy in a role play said, as we focused on change talk, “one thing I’d like to change about myself is to be more extroverted” so my response was “it sounds like you want to make more connections with people”. I was right. It was a guess, but it was an educated one. And this is why MI is both extremely useful and extremely difficult at times.

In MI, you phrase your sentences with “It sounds like” or “So you . . .” or “It seems to you that” or “You’re feeling . . .”. You’re encouraged not to inflect your voice at the end of your phrases so as to make sure it doesn’t sound like a question, which is even harder to do when you speak English and are used to the fail-safe of counseling: asking only questions.

And at first, it feels like you’re telling someone how they feel. This was a reservation I and many others in the room felt. But the more you practice, the less invasive you feel. Instead, you start to get a bit of an intuition on how someone is feeling. If you’re wrong, they’ll correct you. Then you can say “oh, then tell me more about . . .”.

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I’ve experienced the opposite of MI from an LCSW at the hospital. She blabbered on about herself, about how I need to change my mindset and about how depressed I apparently was. She needs this training like a hog needs slop. 

But my real excitement about this training is the crossover I see between it and Intentional Peer Support. I think it’s great that clinicians and certified counselors and licensed counselors have opportunities to do MI (if they go through progressive, or holistic studies), but the truth is many of them will never know what it feels like to go through things their “clients” might. And while love and compassion for your fellow human is wonderfully healing, it’s an advantage if you can also relate through your experience. So when someone says their voices are really frightening them today, you’re going to know what that feels like.

It’s not that you have to blurt your experiences 24/7 at this person to prove you can relate. In fact, you don’t necessarily have to mention your experience at all to connect and understand. The difference is that when you engage as a peer, that compassion you put into it will be from a different place. Mixed with MI, I’d say that’s a very powerful relationship to grow with someone.

The thing is, the world is very focused on quantifying mental health and the human experience. We’ve started to ignore the human part of being human. We want cures and answers and we love labels and the idea of “brain disease” to pawn off someone’s behavior on a reason we tell them they can’t control. Good for profit.

 

dsm5-smWhich brings me, quickly, to the DSM. Were we to see and speak with people in the format of MI, perhaps we wouldn’t see this “rise in mental disorders”. The rise isn’t in the “disorders”, the rise is in the diagnosis. Before the DSM III, all these “disorders” were called “reactions”. Everything. What we call psychosis now, was a reaction. What we call the symptoms of “Bipolar” now, was a reaction. Don’t you see? All they’re doing is changing what we call things. It doesn’t mean we’ve “discovered” more disorders. It doesn’t mean people are broken. It doesn’t mean we have “diseases” or “illnesses”. It means some people in white coats are sitting on the board of the APA playing word games. And the more you believe you’re crazy, the crazier you are.

My fail-safe of DSM critique: Schizoid Personality Disorder. Fucking god-forbid someone wants to keep to themselves and have a restricted range of emotions and NOT be upset about it. Fuck. Kick those people off the fucking planet, am I right? Because, from what I’ve heard from people experiencing this, most of them could care less if they appease society or not. They keep the same job for 30 years, they mind themselves, and they don’t get bothered by it. You know who gets bothered? EVERYONE ELSE.

I get asked at work by guests sometimes what my diagnosis is. I answered the first few times, not because I believed in the terms, but because I felt I needed to appease their questions–they speak the language of diagnosis, so I figured I had to too. After a while I’ve stopped giving a direct answer. Instead, I say “I can’t answer that question–but I can tell you a couple experiences I’ve had.”

surst1So what do I think as a peer counselor and psychology student, of the DSM? You ever heard of “Surströmming”? The fermented fish? The one people have to open under water because it smells so horrible? The one people have to dress up with onions and bread to get a decent taste out of it?

That’s what the DSM is in the world of mental health.

Not Fake News

We need some good stories. Especially these days.

With Trump claiming he got the most electoral votes since Reagan, and then being contradicted immediately by a reporter who listed Obama’s stats, and George Bush’s stats when Trump tried saying “he was talking about republicans”, it’s nice to be able to talk about something much more positive than this moron.

His response to the reporter was “well, I’m just told these things, I don’t actually know”.

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Anyway, enough of that. I watched a video on the YouTube channel VICE news the other day, about a shelter for the “mentally ill” in Mexico, created by a Pastor named Jose Antonio Galvan. I was interested because the title used the word asylum, and I honestly thought they were going to talk about horrible conditions and horrible treatment of the mentally unstable in Mexico. That was my stereotype and assumption.

It was the exact opposite.

Galvan started this shelter in 1995 with the intent to provide home, care, understanding, and compassion for those living on the street who struggle mentally either because of drug induced illness (something like meth psychosis for example) or not. He himself has a history of such things, including an incident which he talks about in the video: seeing hallucinations telling him to attack a preacher on the street who was spewing the word of God. He attacked the preacher with a bottle, cut the preacher’s forehead, and the preacher placed his hand on his head and prayed for him. That was a defining moment for Galvan.

Their government isn’t the most stable. Everyone and their mother knows the country is controlled more so by drug cartels than actual political officials. There’s not a lot of funding or wealth, or solid community structures. Galvan does point out, however, that everyone else gets some kind of care: except those struggling mentally. So he decided to change that. He said only those who had been through such things could understand. He said at Vision En Accion (Vision In Action) the point was to treat humans like humans, to have compassion for those struggling after having been through similar struggle yourself.

Peer support; that’s what he’s doing. Can you imagine how excited I got? You all know me. I found their Facebook page and their website.  Click them. It’s good to read stories like these today.

Now, the landscape, the available services, the healthcare, it’s all different over there where Galvan is compared to us here in the U.S, so they still use terms like asylums and they don’t have proper housing for people who are particularly violent. They’re kept in rooms with bars according to the video. That’s not preferable, but this man and his team are doing more for those citizens than anyone else probably ever has. They don’t treat them poorly behind the bars, they at least get good food and can stay clean and get compassionate support mentally . . . they just kinda, you know, gotta stay in a cage. Like I said, not preferable.

But when you think about it, it’s not much different from isolation in hospitals over here. So get off your high horse and let’s not be so quick to judge. Just because we paint our bars a nice pretty white, call it a door, and decorate the halls with “trained and educated professionals” doesn’t mean a thing. Remember, America is notorious for embellishing shit to make it look like blooming roses.

If you have a passion, if you have an idea, don’t worry the idea into extinction about how you’re going to do it, what you need to do it, or if it would even work. Just do it. That’s how organizations get started, that’s how lives are changed. At one point in my life, I would love to volunteer here and include Vision En Accion in the growing spectrum of compassionate healthcare.