“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
— Margaret Mead
I write this piece from Anchorage, Alaska, where I am presently filling in as the executive director of Soteria-Alaska while their founding executive director, Susan Musante, is on sabbatical. Soteria-Alaska, a program designed to follow Loren Mosher’s California Soteria model from the 1970s and early 1980s, has been up and running for the past three years. Soteria-Alaska is a house, staffed around-the-clock with gentle, open-minded nonprofessionals, with five beds for people experiencing psychosis. The basic idea is that people can live in the house for about six months or so, give or take, in order to work through or pass through their psychosis with little or preferably no psychiatric medication. Soteria-Alaska is a largely state- and grant-funded program open primarily to Alaska residents, for whom, if they are low-income, it is free.
In this article I will explore the work Soteria-Alaska does with clients — known as residents — and assess the quality and success of this work. But first I will provide a little background. Loren Mosher, a psychiatrist who was the Chief of the Center for Studies of Schizophrenia at the National Institute of Mental Health, designed the original Soteria Project as an alternative to hospitalization for people experiencing a first-time psychotic crisis — one of the variety that would traditionally be treated with a locked ward, neuroleptics, a likelihood of restraints, and an eventual diagnosis of schizophrenia. All too often this traditional path resulted, and still results, in a lifetime of psychiatric disability, which the system considers normal, which is why it so often tells people experiencing psychosis for the first time that they need to “accept their illness,” “take their drugs for life,” and the like. However, the original Soteria House in San Jose, California put this idea to shame. Some sixty to seventy percent of its residents — all of whom, in the first several years of the program’s existence, came straight from San Jose’s local psychiatric emergency room — recovered fully. They moved on to productive, non-disabled lives, returning to school, getting jobs, and leaving mental health treatment and psychosis behind.
Soteria-Alaska was founded by Jim Gottstein, an Alaskan psychiatric survivor and Harvard lawyer who recognized Anchorage’s need for a similar hospital diversion program. Prior to the creation of Soteria-Alaska, there were no alternatives to hospitalization in Anchorage (or, for that matter, almost anywhere in the United States) that promoted the idea of full recovery without medication. Jim, along with others, created Soteria-Alaska with a clear vision of helping people recover fully. The main hurdle in implementing this, however, has been figuring out how to integrate a program with this vision into the mainstream biopsychiatric mental health system of Anchorage, which relies on heavy pharmaceutical interventions for its primary lines of defense. Most programs and treatment providers in Anchorage, as in the rest of the United States, don’t consider as relevant the concepts upon which Soteria is based, and may even think them dangerous or harmful.
The basic model of Soteria is a sort of “live-and-let-live” philosophy — one of “being with,” not “doing to.” Philosophically, Soteria avoids forcing or pressuring anyone to do anything. By conventional standards, one could argue that Soteria is not really even “treatment,” per se, rather, a program which gets out of people’s way and gives them the respect and freedom to go through their process on their own, albeit with the emotional support of others. Soteria views psychosis as a sort of crisis or emergency that is laden with meaning, and that people can derive value from their crisis while living in a community of respectful, caring, intuitive others. This really is a radically different model, concept, and philosophy than that of mainstream biomedical psychiatry. Yet the rub is that Soteria-Alaska, like the original California Soteria, gets its referrals from within the biomedical psychiatric system. So basically Soteria contradicts, but nevertheless has to get along with, the traditional mental health system. This is no small challenge.
This has affected the manifestation of Soteria-Alaska’s vision. The main area of drift from the vision is that Soteria-Alaska hasn’t ended up working with the type of people for whom it was designed to help. Instead, for a variety of reasons, Soteria has worked almost exclusively with people who are more “chronic” psychiatric patients, that is, people who, to varying degrees, have been in the psychiatric system for some time, have been exposed, in many cases for years, to psychiatric drugs (such as neuroleptics, mood stabilizers, antidepressants, and the like — and often combinations of them), have been psychiatrically hospitalized (sometimes multiple times), and may even be on government disability upon admission to the house. This is quite a departure from the original Soteria model, because compared with people experiencing a first psychotic break, “chronic” patients generally have far more serious, intractable, and complex problems, and as the result tend to be far harder to help.
Because of this, Soteria-Alaska, from the information I have gathered, has not experienced good recovery rates — insofar as Mosher’s original Soteria definition of recovery involved people getting and staying out of the mental health system and living independently in the community (and, I would also add, becoming employed or returning to school). Yet this is not to say that Soteria-Alaska has not had profound value as a program, or, like the California Soteria, as an experiment. First let me address the value of both Soterias as experiments. The California Soteria showed, beyond a doubt, and revolutionarily so, that people experiencing a first psychotic episode did far better living in an unstructured, homelike, protected, gentle, non-coercive house with other residents like themselves and with a staff picked for their interpersonal qualities and their lack of psychiatric training than did similar people if they received traditional psychiatric treatment.
The Soteria-Alaska experiment has, thus far, been a different one. The experiment here, though not formally defined as such, has, to my mind, been to see if a house structured and staffed quite similarly to the original California Soteria House would be effective in helping chronic mental patients get fully out of psychiatry. And, like any good experiment, a clear negative answer is just as good as a clear positive answer, which is why I consider this part of the Soteria-Alaska experiment to be a valid one, because I consider the answer to be clear: Soteria as a program is not successful in helping catalyze the full recovery of chronic mental patients. That said, it has been successful in catalyzing the partial recovery of several residents, beyond any expectation of traditional mental health. Nevertheless, it has not yet proven itself, in its first three years, at promoting any full recoveries in line with the original Soteria definition. Thus, my conclusion: Soteria is not a one-size-fits-all program for clients.
To backtrack, though, I would like to address the thread regarding the help it has provided people. Soteria-Alaska, after all, has been incredibly valuable to many, if not most, of its residents — even the most “chronic” ones. Many people have grown with the help of Soteria-Alaska — even in spite of the 2011 shooting of a former resident by another former resident on the grounds of Soteria. Overall, almost all residents at Soteria-Alaska have had a chance to experience freedom to make their own choices, to experience respect by the staff, to participate in a curious and welcoming community, to engage in healthy decision-making, to have healthy meals and healthy fun, to experience liberty to feel their own feelings, and to experience the opportunity to fall down — sometimes pretty hard — and to get back up again. Also, many residents have gotten the invaluable chance to explore and express the limits of their nontraditional behavior in a way that almost no other mental health program I have ever witnessed would tolerate — let alone for such a long period of time. As the result, many residents have matured profoundly as the result of their time at Soteria. And at least one Soteria resident even came fully out of a profound psychosis, off-medication, during the resident’s stay at the house.
In no small part I credit their founding executive director, Susan Musante, for this. She has fostered a community of staff, residents, former residents, volunteers, allies, and a board of directors who are passionate about the Soteria mission. Her gift with people has nurtured something truly special — something which drew me to visit in 2011 and drew me back again now. She has set a standard for authenticity and respect for personal choice that is rare in the modern mental health field. And it permeates the Soteria climate. The Soteria-Alaska staff are some of the most flexible, respectful people I have had the chance to work with. And so many of the residents with whom I have interacted, even ones who left Soteria in rage or anger or resentment or crisis, note this — and note the value they received from this. For many it has been the first time in their lives where they found a place that accepted them as they were and welcomed their evolving, and often terrifying, processes. I myself have gotten to speak with several former residents about this, because they phone Soteria all the time and just want to talk. Soteria is a place, and often one of the only places in their lives, where they feel safe to do that.
But I realized not long after I began my job here that the way Soteria-Alaska has manifested has come at a major price. For starters, it can be extremely taxing on the staff. It is not easy for them to interact so intensely, intimately, and authentically with chronically psychiatrized and institutionalized people, especially when these residents are coming off their psychiatric drugs and discovering their abilities to express themselves with almost entire freedom. Staff burnout has been a serious issue here. I would have to say that working at Soteria-Alaska is not a job I would reasonably expect someone to be able to do for a long period of time: perhaps a few years at the most. The reason, as I hypothesized to the staff shortly after I arrived, and to which they concurred, is that because they were working with chronic mental patients as opposed to people experiencing first psychotic breaks, yet holding nevertheless to the same Soteria goals of full recovery, they were working far harder for far less promising results.
Full recovery by a resident is a major boost for everyone because it sends positive shockwaves throughout the community. It restores all of our hope — and reminds us that this seemingly mysterious thing called psychosis is just another normal human phenomenon through which we can pass and come out the other side, and even come out stronger and wiser. But if people are not coming out the other side, or at best very rarely do to a full degree, who can expect people, especially long-time staff, to remain hopeful? Partial recoveries partially boost hope, but not nearly to the same degree as full recoveries. Thus, if staff don’t see full recovery, and especially if they don’t see it on a regular basis (which happened at the original Soteria House), they risk becoming demoralized and starting to think of psychosis not as episodic but as chronic.
That, as far as I can see, is the result of what the traditional mental health system’s near ubiquity has done to our perspective. Once people spend increasing amounts of time in the system and on these drugs, especially the heavy ones in the combinations so presently prescribed, their actual likelihood of pulling fully out of chronic patienthood goes way down. My experience as a therapist has shown me this loud and clear, and Robert Whitaker’s book “Anatomy of an Epidemic” outlines this same phenomenon from a scientific perspective. My belief is that full recovery is just too difficult to achieve for many chronic mental patients unless they have a program working for them that is a lot more intensive and structured than Soteria. Also, from what I have read, the people who end up heavily polymedicated for long periods of time have had their brains — and I use this word carefully, because I am not referring to their minds here — profoundly affected by these drugs. It seems to me that so many of these people have their own special, individualized versions of traumatic brain injury. And, in general, many need a lot more help than just love and kindness and respect and compassion of the Loren Mosher Soteria variety.
In this vein, Soteria was not really designed to be a medication withdrawal program. Medication withdrawal, even with only one resident withdrawing at a time, risks being simply too intense for a Soteria environment to handle, and even more so when we envision several people simultaneously going through drug withdrawal and a consequential rebound psychosis. Soteria’s work is hard enough; the drug withdrawal component, in my opinion, makes it just too hard. And converting Soteria into a successful drug withdrawal program would, in my opinion, require that Soteria sacrifice so much of its basic philosophy and character that its very Soteria nature would most likely be undone.
For that reason, my primary goal during my short tenure at Soteria-Alaska has been to try to connect Soteria with the residents for whom it was designed: people experiencing a first psychotic episode. This is easier said than done — which, to be fair, is what everyone told me when I arrived. Some even told me that such people no longer existed, because, according to them, most everyone with “problems” in Alaska gets medicated, to one degree or other, in childhood nowadays. But I didn’t entirely believe this — because I have met some adults in Alaska experiencing first breaks, heard stories of many others, and also met recovered people here who themselves passed through unmedicated first breaks.
As I see it, the main hope for Soteria-Alaska, if it wishes to hold to the original Soteria model and remain a sustainable, nonintrusive, non-coercive, unstructured, freedom-respecting program that shifts its course toward getting robust recovery rates from psychosis, is to forge a strong, ongoing, positive relationship with Anchorage’s local psychiatric emergency room and create a way to assist them in diverting at least some percentage of their patients experiencing a first psychotic episode away from traditional psychiatry and toward us. (I actually think an intimate connection with the local psychiatric emergency room would prove key to the success of almost any program that aspires to help people in first psychotic episodes.) I, along with Soteria’s directing clinician, have been working at developing this relationship with the emergency room staff, and so far, surprisingly, have been watching it blossom.
There have been some problems developing this relationship, though. One main one is that that they have, for some time, held a generally negative view of Soteria-Alaska. Their negativity seems to have arisen because their most primal contact with us has come from meeting some of our most conflicted residents when they are at their most troubled: when they have left Soteria, are in a state of florid rebound psychosis from medication withdrawal, and have returned, often against their will, to the psychiatric emergency room. Their staff also know the story of the 2011 shooting at Soteria, because it made all the local news. So they have looked at Soteria through a skeptical lens. And, from their perspective (even if I hold a different one), why wouldn’t they? They see their job as to help stabilize psychosis with medication, and they see us doing the exact opposite. Also, if Soteria were really helping many people recover fully, the psychiatric emergency room would be referring people to us, and not us to them. Thus, I have been focused on changing the direction of that one-way street sign.
What made me hopeful that this was possible was that even though, in my first month at Soteria, the psychiatric emergency room staff held a negatively tinged view about us, they remained open to referring to us. I found this curious, and I recently had the chance to ask one of their clinicians why this was.
Her answer, which I will paraphrase: “We’re just doing our best here, we’re often overwhelmed with intakes, and we have so few resources aside from medication and hospitalization. And some people who come to us really don’t want to take meds — and we don’t want to force people to do things against their wills, especially if they really don’t seem to be a danger to themselves or others. So Soteria, if it really might be able to help some people, could be a resource — and we want to consider it.”
This made me hopeful. But, as far as I saw, it also meant that Soteria-Alaska had to change some of its ways. We had to make the house a safer, more respectful, more welcoming place for people experiencing first-episode psychosis. In some ways Soteria-Alaska, as it was manifested when I arrived, was not always so welcoming. Chronic mental patients, especially if they were coming off heavy, long-prescribed psychiatric drugs, could be very disruptive to the atmosphere of the house for a very long, and even seemingly indefinite, period of time. I know that the original Soteria House in California worked with a lot of people who could be disruptive (window-smashing, violence, etc.), but it’s my understanding that these disruptions, however major, didn’t usually last that long: they were measured more in days, perhaps several weeks. At Soteria-Alaska these disruptions, including episodes of ongoing violence, destructive of property, threatening behavior, and, not least of all wild, super-intense, and very difficult-to-reach rebound psychosis, could last for endless months — and if given a chance, could last even longer. This can have a serious negative impact on others’ recovery.
For this reason, I suggested and the staff agreed that for the first couple of months of my tenure here we only accept new residents who are experiencing a first psychotic break, or at the least something very close to it. This was a high-pressure plan, as it entered us into a waiting game: to see if we could build a relationship with the local psychiatric emergency room, and perhaps with other potential referral sources, like the local universities’ counseling services, quickly enough to find appropriate residents before we ran out of financial resources.
Yet, as I noted, things, at least preliminarily, have begun to blossom for us. In the last month the psychiatric emergency room has sent us one person whose life situation rather closely fit within the criteria of our mission and another whose situation fit it perfectly. Also, five weeks ago the local psychiatric hospital, with whom we also shared our new, clearly-defined mission, referred us another person who was very close to meeting our mission’s criteria, though this person had been on neuroleptic medications for a few days. We accepted all of these young people, and so far they have all been living successfully at Soteria. It is too soon to know exactly how Soteria will work for them, but so far one thing is clear: it’s not not working!
Regarding these three new residents, one other key thing that I have observed is that none of them has been going through something so commonly experienced by past residents of Soteria-Alaska: severe psychiatric drug withdrawal. And all three of these new residents stopped taking their psychiatric medications by choice. The two residents who came from the psychiatric emergency room had been on a neuroleptic for less than two days, and because of that had no noticeable effects from stopping taking it at Soteria. The other resident, who had been taking a neuroleptic for slightly less than a week, experienced some disturbed sleep from stopping the drug — which the resident tapered, with our consultant psychiatrist’s supervision, over several days — but little else.
So in some ways we at Soteria have been feeling much less pressure — and much more hope. We now know that the psychiatric emergency room staff are willing send us people whom they feel are appropriate for our services. This is, to say the least, extremely exciting. I must admit that I didn’t feel overly optimistic about this two months ago, before we had any residents in our house who fit our mission criteria, because it was by no means assured that the emergency room staff, or anyone, would ever send us anyone appropriate. And I shuddered to consider what would have happened if no one connected us with anyone appropriate. Would we go back to square one? Would we have to change our program dramatically to accommodate a more psychiatrically chronic type of resident? Would we have to contract with potential residents that one condition for staying at Soteria involved them agreeing to stay on their medications?
At the time, I brought up this final possibility with several staff members at Soteria and to a person they all said that if people were required to stay on their psychiatric drugs as a requirement for residency at Soteria then they would quit their jobs.
I heard: “I couldn’t work at a place like that.”
And: “I would lose my heart for this work.”
And: “That goes against what I stand for. People need to be free to choose their life path.”
And I don’t disagree. But as I replied to them: “Then we need to make sure we continue to work with people whom we can actually help, and really not take on people who are chronically disabled by psychiatry and institutions.”
They agreed. Thus, the challenge remains — but at least now we have a bit more hope, and can see a bit more light at the end of the tunnel.
Meanwhile, we have used the new opportunities provided to us to strengthen our bond with the local mental health practitioners. We have shared our early successes with them, and they have made it clear to us that they wish us — that is, they wish the residents they sent our way — to succeed.
And to me this signals a whole new area of hope, on a broader societal level, for the following reason: if people who work in mainstream biological psychiatry are willing to consider referring people in severe psychiatric crises to a program that operates under both a completely alternative philosophy and model to their own, then I see hope for our world’s mental health system. If our local psychiatric emergency room is willing to refer to a program like ours, then other psychiatric emergency rooms elsewhere in the United States and the world must be willing at least to consider doing the same. For this reason, I do not feel like Don Quixote tilting at windmills. I feel the system can change.
But the first thing we, and other programs like ours, need to do is to document our results and show people that these alternative programs can and do actually work. We also need to be honest with ourselves about who we can help and who we can’t, and then we need give it our all to try to help those we can. And for those we feel we will be less likely to help, we need to look seriously into creating programs that will realistically and practically help them.
But the bottom line is that we need to keep building on our successes. This is the recipe for future hope.
I think this is a really important article. I think that we need to know more about helping people who have been trapped by psychiatry for a long time and who have been on meds sometimes for years, if not decades.
I know several people who have had relapses when they came off their drugs.
We really need to develop ways of helping people in this situation. I personally think they can be helped to recover, or at least many can, but I think it needs a different approach from Soteria. The people who I knew had obvious problems in their lives, conflicts with people who they knew, both before and during the time they withdrew from the drugs. I am wondering if the sort of support provided by Open Dialogue plus a slow tapering of the drugs over a very long period might be of use? They seemed really vulnerable to any kind of conflict and helping sort them out before they attempted withdrawing from medication might make the whole project more likely to succeed.
This needs more thought but I am rather tired, so apologies for this rather short response to what is an excellent and thought provoking article.
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thanks John,
Good food for thought. I am in the process of writing a new article on different programs that might, better than Soteria, be of use to people coming off psych drugs. Open Dialogue wasn’t created for that, but some elements of Open Dialogue would surely be useful…
All the best to you—–
Daniel
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Wow, this is the first time I have read this great article by Daniel Mackler who I met a year ago at a convention in Florida. Amazing you are Daniel.
I also want to say, I am sooo glad to hear so many comments about what is happening in this world of ours pertaining to the issues of treatment of both medication madness of forcing drugs immediately upon crisis and also pertaining to HOW TO REACH those who have been brainwashed in the system and have come to surrender to the system’s forced hand.
I am someone who has tried fighting the system for well over 30 years. I ALWAYS refused to take my medications once released from the crisis center mainly due to the fact that when I had my “first break” (sorry I know some hate to hear that kind of language but only way to say that it was my first time introduced into this whole field of psychiatry and all its additives) at the age of 19 (now 52), when they gave me Thorazine… I ended up with the Thorazine shuffle and lockjaw and almost took the bridge (literally, I was contemplating it because of this drug they gave me) because of what that medication did to my mind and body (off the top uncontrollable anxiety created by the drug). But for the last 2 years, I have succumbed to taking medication on a regular basis because it seemed that I could not get past 3-4 years without having a break. After 14 hospitalizations in the past 30 years, I am getting tired. Though, I have always dreamed of having a place for those who suffer with these problems. I actually still own 5 acres of land in WV I bought in 2005 for this very purpose but ran out of money to build the home (center).
I am finding this whole world’s view of the so-called mentally ill becoming very frustrating and almost hopeless. But after reading, all of these comments, you have all inspired me once again to keep moving along with the ideas I have always had about how government and the psychiatry field have had way to much power.
I want to say to “anonymous”… that your writings truly touched me as I felt your anger? or the injustice that obviously you have witnessed or experienced (Excellent writings). I too have been in that “mind space” and find it hard to trust many at all when it comes to finding a place of rest when I need it the most (when in crisis)… there HAS TO BE A WAY to get through the crisis’s without the hell of dealing with the “professionals”… which are far from professional. I have seen so much in my lifetime having to do with people treated horribly at the hands of “professionals” its scary.
Yet, I see that even at Soteria-Alaska has its challenges. I can’t imagine the energy needed to truly help (with respect and dignity) those who are so out in left field due to medication withdrawals… doing it in a true dignified manner would be a sight to see. I am glad Daniel that you have witnessed this first hand at some of these places you have been to. I wish I could be a part of this movement that shows you another way to really help people in this way. It is the only thing I have lived for in the past 25 years – I feel it is my only mission in this life but still don’t know how to bring it all together.
Keep up the great work everyone … YOU simply amaze me that you care so much for all of us that have lived through some real “hell” in this life. Thank you for working towards finding the real truth in all of this, by posting your opinions. It has helped me tremendously.
BTW, the center I was going to open, was going to be called IMAGINE: A Healing Center for the Soul (named after John Lennon’s song Imagine).
Peace, Sherri Zimmerman
http://www.imaginepeacenow.com
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Sherri — I am so touched by your words and your vision. I believe there MUST be a way for people who have been damaged by neuroleptic drugs and polypharmacy to recover their lives. Perhaps some of them may never be “normal” — whatever that is — may not get jobs to support themselves or return to school.
But is that the be-all and end-all of “recovery?” I imagine it is possible to live a life the person finds meaningful and worth living, even if occasionally touched by “extreme states,” and that there could be safe communities for such people to live together, support and care for one another through the good and the not so good times. I imagine it to be a place where careful and supported drug tapering could take place over a period of months, or years, as needed, where there was enough structure to help ease people into daily life in healthy, healing ways — like gardening, cooking, carpentry, making useful things, making art, music.
How can we create this? What is needed? Staff that is paid to gently assist in creating stability and calm? Are there others here who would like to discuss this and how to make this vision real?
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Hi Daniel,
Thanks for writing here about Soteria-Alaska. I’m not sure I want to know the answer but… Just how many staff and volunteers does it take to serve 5 residents? I don’t get it; some mothers raise 6,8,10,more kids at a time. Some homeschool at the same time. Some women take care of multiple at-risk foster kids at the same time. They do it without off-time, professional training, or the ability to just quit. I myself got off of a four psych drug cocktail during 3/11-6/11 after 12 hard core years of drugging for my supposed bipolar and I did not require any special services (I could manage my self-care, cooking, cleaning, shopping and the like.) I get that chronic psych patients are hard (I was one, so I know intimately well) but you make us sound pretty intractable (which I no longer believe to be true if we get off of the drugs).
I don’t get why there was so much writing about staff burnout on a three year project. Because you have to deal with chronics instead of virgins? Don’t give up on nor dismiss us chronics! If people genuinely want to get better or get off of the drugs, I think you should give them a chance no matter how many years they have put in as a chronic. I think that this is just as inspiring (and as radical in mental health care thinking) as getting psychiatric virgins in a “first break psychosis” and saving them forever more from a life of a chronic.
Even if I seem to be ranting, I still admire you very much for the work you are doing. I wish you much perseverance and many successes along the way.
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Soteria-Alaska has two paid staff on at any given time. From what I have observed raising kids is quite different from being a staff member at Soteria — basically not comparable, in my opinion. The intensity level is often radically higher at Soteria.
Meanwhile, very cool about you coming off psych drugs. But I don’t think for one second that I have dismissed or given up on “chronics.” I just was trying to make the point that, from what I’ve observed and studied, Soteria is not the best place for people who have been in the system and on psych drugs for a long time. There are programs that are better set up to work with people who have been in the system longer. Soteria wasn’t set up for that, and basically hasn’t gotten good results with these kinds of folks.
As for me personally giving up: NEVER. I just think it’s important for me to share what I observed, and have been observing a lot in the world.
This is not, however, to say that Soteria couldn’t help some people in very “chronics” situations — in fact, they have helped some people in these situations a lot — and I said this in the article. It’s just they haven’t helped people recover fully — according to Mosher’s definition of recovery.
all the best — and thanks for the thought-provoking comment!
Daniel
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Daniel — You say “There are programs that are better set up to work with people who have been in the system longer.” What programs? Where? I’m looking and haven’t found them yet.
Thanks for your work. May there be many more Soterias, and many more alternatives for the thousands of people who have been trapped in the system with few alternatives for decades as well.
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Thank you, Daniel, for this very thoughtful piece about what has happened and is happening at Soteria-Alaska. One of the many things I have always appreciated about your work is your willingness to speak directly about the hard questions, to be skeptical in a kind and open way, and to speak the truth as you experience it. The unfolding and challenging story you describe at Soteria-Alaska just reinforced for me the complex, long-term trauma and damage that is perpetrated on people by the psychiatric system and how hard it is to undo that harm, especially the organic damage done to the brain by long-term use of neuroleptics. There is a desperate need for people willing to work with people who want to come off those drugs, but as your story clearly illustrates, it is a very different process than offering a supportive space for people experiencing extreme states for the first time. As Emily said above, both kinds of work are needed, but I would submit that each may require a different approach, and staff with different skills and/or personal characteristics. I know of no organized efforts to provide assistance to people coming off long-term neuroleptics – I’ve certainly never read about it in the literature- so I think it would be exploring new territory to do this, and there’s no clear guidance on how best to approach this task. I wonder about the possibilities of trauma tx for people who have been traumatized by psychiatry, and whether there are limits to what can be done to undo the organic damage that the drugs have caused. Thanks for the work you do and for writing about it so honestly.
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thanks Darby — much appreciated! One program I love that has focused on helping people come off the drugs is the Family Care Foundation in Gothenburg, Sweden. I’ll actually be visiting there in two weeks. Perhaps you saw them in my film “Healing Homes.” I made that film to contrast their work with a program like the Open Dialogue Project in Finland, which just focuses their research on people experiencing “first breaks.”
What I like about the Family Care Foundation is that they provide a lot more intensive, long-term support for people coming off the drugs than do programs like Soteria. As I see it, this support provides better “shock absorbers” — or more cushion — so that people don’t end up leaving the program so precipitously when the going gets rough…..
all the best to you!
Daniel
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Not sure that Open Dialogue would be the answer here. Psychiatry doesn’t only mess with people’s brains and their minds, it also messes up their social networks. People often become very isolated. And I don’t know if a network meeting with the case worker, the prescribing psychiatrist and… and… who else? really would make for an Open Dialogue network meeting. Open Dialogue seems to be designed primarily for “first break psychosis”, just like Soteria. I imagine something like the approach of the Family Care Foundation to be much more efficient when it comes to helping “chronic mental patients” recover.
Great post, Daniel! While it respectfully shows us the limitations of Soteria, it also, and at the same time, shows us how much damage the biomedical paradigm actually has done and continues to do. Not just on an individual level.
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I think people who have been taking psychiatric drugs for a long time, who want to come off, “Recover,” and get a life together vary in just how much of a social network they have. I am thinking of people who had social networks but still go in and out of hospital during what are sometimes quite awful crisis, quite often this is related to coming off the drugs but often there are other factors. Sometimes though it is the services protecting themselves by taking people in against their will when they are having a moderately severe crisis.
At a day centre I used to go to I met people who were fairly isolated but still had some social contact with family and others outside the psychiatric staff who were in their life.
At the same time there must be people who live in bedsits or “Supported housing,” who see almost no one outside of staff. So whether we look at the Family Care Foundation with what I shall call Adult Fostering, or Open Dialogue we are still looking at building up someone’s social network and finding ways of forming trusting relationships while slowly coming off the drugs.
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At the same time there are people who come off psych drugs and move on/escape from the psychiatric system after being in it for years. There are several people in the Hearing Voices Movement who have written and given talks about doing so. Ron Coleman and Debra Lampshire are two who come to mind. So obviously it is possible. But institutionalisation and the drugs are added barriers and we don’t have the research to have a full picture of what helps, what doesn’t and how this differs from first episode nuttines (I’m suppose to write psychosis here, but some don’t like the term). So this is a useful discussion _ I hope
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right on, Marian — I agree with what you write. As you say, a big part of Open Dialogue is working with social networks, and so many people I’ve seen who have been in (and out and in and out) of the system for a while have lost a lot of their social networks.
—Daniel
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Thank you Daniel,
I have been curious about Soteria Alaska since I heard about it. I find myself struggling with many of the same challanges you write about at Second Story House, Santa Cruz, CA. We were designed to work with “Santa Cruz County System of Care Mental Health Clients”. With the premise that Peer Supporters trained in IPS could help people who stay with us for up to 13 nights reduce their use of traditional services, and thus reduce cost.
What I see after a year and a half, is a vibrant collabrotive house full of a combination of guests (residents), volunteers, vistors (previous guests and friends/family of current guests), and peer support workers. I don’t know what the data will show when we get the results, but I do know that most people who have been involved with the project would say that it was an incredibly positive experience, if sometimes a little messy, a little “who works here and who is staying here” confusion. Always a delicate balance of what a paid workers role is, and what a guests role is. An oppurtunity for conversation, hopefully while doing dishes.
There have also been a few people who were really uncomfortable with the “non-professional” atmosphere where the expectation is that everyone is a responsible adult looking to learn something.
As Daniel stated above there are people who are so used to the “helper/helpee” role that anything else is seemingly unimaginable.
As peer supporters striving to impliment this philosophy we are often challanged by the degree that we are required to “care take” people. How do you have a mutually responsible relationship with someone when you are expected to follow through for them if they don’t follow through. I look forward to reading more about others’ experiences as well as sharing mine on this site.
Thanks for giving us a glimpse.
Rigel
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very cool, Rigel — thanks for sharing. Quite interesting.
Daniel
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Daniel,
Thank you for all you’ve done to make people aware of non-drug approaches for healing.
I’m sure your work has steered many folks in the right direction – away from a failed conventional model, toward one of hope.
My best,
Duane Sherry, M.S.
discoverandrecover.wordpress.com
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thanks for the support, Duane!
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Hi Daniel-
I’m very sorry to hear that it sounds like the original San Jose Soteria model of serving people in first episode psychosis, with the stated goal to divert the majority of them from a possible lifetime in the system, was not supported from day one by the mental health administrators in charge of psych emergency in Alaska.
With out an iron clad policy built into the program design, of every person who comes to psych emergency in first episode psychosis being sent to Soteria at once, the situation you describe was inevitable. The intended first episode residents are not being served as a result of a preventable, initial program design error.
Three years into the program Daniel, and you are bravely trying to rectify what should have beeen in place from the beginning.
The I-Ward 20 bed open door, no restraints, medication free first episode sanctuary I worked in for over three years,(see my MIA blog on it here) was contacted by psych emergency within 10 minutes of someone in a first episode psychosis coming or being brought to psych emergency.
One of us I-ward staff would go to psych emergency and bring the person to our sanctuary at once.
We were open for 8 years operating that way. From day one, the mental health director in charge of all services and psych emergency made and enforced this policy of direct admission to I-ward of all people in first episode psychosis.
We kept the integrity of our first episode, med free sanctuary until the day a new mental health director terminated the program.
I hope you and the dedicated staff at Soteria Alaska can do the political work necessary to obtain the kind of iron clad policy I have described. Without that locked in policy pressure from above bearing down on psych emergency, you will not be able to assure every person in first episode psychosis the chance they deserve.
I know you all want to do what they were able to do so successfully at Soteria San Jose, I-ward, Diabasis and Open Dialogue in Finland.
I co-led a conference workshop with Loren Mosher on our common work in medication free sanctuaries. I’m sure he would applaud your efforts Daniel, to make Soteria Alaska a real Soteria house that allows people in first time psychosis to go through their psychosis med free if they choos, and be free of the system because they were.
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Hi Michael —
yes, an ironclad agreement with the pysch emergency room would have been fantastic. No doubt about that! Who knows — maybe such things will become possible in the future. Until you wrote this post I never really thought about the concept of an ironclad agreement……it almost seems like fantasy to me……….a good fantasy. Maybe someday!!
Thanks for your sharing—–
Daniel
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Hi daniel, so exciting to know you are filling in for Susan for a year! You are so correct in your intent to bring Soteria Alaska back to the true intent of Loren’s design and purpose for Soteria. I of course agree, having worked at Soteria san Jose, and now having spent 30 yrs in “the system” that the model of Soteria can’t work for the “chronic” patient that has been on meds for years. As Rigel said above, our respite house, second story, has become a community that provides open minded space for guests tomexplore themselves and talk with other peers about their process and journey. the folks who have been in the system are discovering from the peer to peer model that hope, is possible and they are learning about choices, becoming empowered and some are choosing to explore alternatives in a well informed process, similar to will halls, harm reduction model.
I love that you are making headway with the psych ER ‘s to send first break young folks, sounds like we finally may have a Soteria again in this country. I’ll send your blog to john Bola and Loren’s wife, john may want to get involved for the research part.
Will I see you at esalen this November? Hope so
Keep up the good work
Yana
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hi Yana —
great to hear from you, and I look forward to hearing more and more about the original Soteria. Actually, I’m only filling in for Susan for a total of 3 months — a short sabbatical for her!! And for me it’s ALMOST over — just another week of work, and then I’m moving onward. It’s been an amazing three months (actually it will be 4 months in Alaska in total). Great learning opportunity for me — and I have incredible respect for everyone at Soteria-Alaska. The dedication and talent is stunning.
Hope to see you soon,
Daniel
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Daniel, is there an evaluation being conducted of the Soteria-Alaska program?
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Yes and no….. There was one being conducted but it was curtailed over a year ago, but it looks like it’s starting up again. Results are preliminary so far….. My observations came from talking in depth with the staff, listening to the residents, making my own observations, talking with former residents, etc.
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Thank you very much, Daniel, for this thoughtful and detailed report of what is going on with Soteria-Alaska. I myself was in a very similar program in Vancouver in the 1970’s after I had left New York and uprooted myself from all the supports I had constructed for myself to deal with my past as a childhood shock survivor. Just as you describe, there was that same tension about the Emotional Emergency Centre taking in people who were confirmed in their identity as “mental patients.” They liked the kind and supportive atmosphere, but were really not in the place to change. I sure was, and got a lot of benefit from it.
But it isn’t surprising that the system doesn’t want to send first-break people to places like Soteria. If they did, over the long term there would be very few “chronics” left to drug. There would be very few people left to justify the power of the system. Of course, there will be a lot of resistance to this.
And while it is great, and I find it amazing that the states of Alaska and Vermont(both among the smallest states by population for some reason) are funding Soteria Houses, funding is not likely to be forthcoming from most public mental “health” systems without a political fight.
I think Soteria Houses have the most potential of all the alternatives out there to really transform the mental illness system into a social institution that really helps people. The problem is that the people who run the present system see it that way too. I think a lot more has to be involved than the idea that somehow the people in power now will see the light. I agree with Frederick Douglass when he said that “power concedes nothing without a struggle.” He knew what he was talking about, and lived it.
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Rock on, Ted! I love reading what you write—–Daniel
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Thank you Daniel for your service to the community!
I believe that the Soteria House is a much more humane environment for those struggling with emotional distress. But I believe that the outcomes of the residents of Soteria House don’t approach the outcomes for Open Dialogue for a couple significant differences.
I contend that mental distress is natural emotional suffering from real lived experience. Open Dialogue addresses a person’s real problems in their real environment; Soteria House removes people from their real environment and isolates them from their real world (albeit in a comforting environment). While people may feel safe in the supportive environment of the Soteria House, removing them from their real social world reduces their ability to solve their real problems. A supportive environment is extremely important, but not as therapeutic as a supportive environment that facilitates a person’s solution to their real life problems.
Moreover, a person is additionally more likely to be able to solve their real life problems without the stigma of a mental illness. In Open Dialogue, people struggling with mental distress never enter the system and become labeled with a mental illness. In Soteria House, the atmosphere may be supportive, but a person has entered a system that labels them with a mental illness. The false label of a mental illness causes increased emotional distress and reduces positive outcomes.
Best wishes, Steve
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hi Steve — very interesting points. And definitely worth considering. One thing, though, that is greatly advantageous about Soteria over Open Dialogue is that Soteria is much easier to set up — Open Dialogue practitioners requires tons of professional training, whereas Soteria uses almost exclusively nonprofessionals.
Also, I do think there is some truth to the idea of stigma being attached to living in a house like Soteria, and less so about Open Dialogue (of the Finnish variety).
all the best,
Daniel
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I always bristle when I see this “first break” language that permeates much of the conversation around these issues. What broke? What is the “first” time? How accurate is your intel on the person’s entire life history? Could you be contributing to the self-fulfilling prophecy psychiatrizing playbook by telling a scared young person they just had what is only the “first episode” (presumably in a long story to come). When you get divorced, does society send you the message that this is only your “First Divorce”? When you get diagnosed with cancer, does the (real) doctor call it your “First Tumor”? I don’t like it, I’ve never liked this kind of talk. It rubs me the wrong way.
The language of “first, second, third”, “breaks”, “episodes”, is the language of the people who authored the life story of madness over the last few generations. People whose quackery is so unimpressive and destructive, they don’t even deserve to have their language given the oxygen of usage.
Let me also say, I respect people in the movement’s right to create alternatives, and try and help, and all this, but for me personally, a big red flag is the sheer fact that Soteria Alaska is government funded (he who pays the piper calls the tune), but by far the biggest red flag for me would be this, which is presented as a ‘positive’, but it’s the primary reason I’d avoid an alternative like this.
The “strong, ongoing, positive relationship with Anchorage’s local psychiatric emergency room”.
“if Soteria were really helping many people recover fully, the psychiatric emergency room would be referring people to us, and not us to them. ”
This is plain scary to me. If you are referring people to forced psychiatry, and by “refer” I assume you’re not just giving them the business card of their local government forced psychiatry human rights abusers, how could people feel safe?
If Soteria is supposed to be a place without forced drugging thugs, biological chemical control of behavior, restraints, solitary confinement, that’s good. But when instead of these things, a telephone sits in the Soteria house, with staff willing to simply call in the forced drugging thugs, then the threat is still there, just hidden behind the telephone line to the authorities.
I find it interesting that the local forced psychiatry staff from the “emergency room” said this:
“and we don’t want to force people to do things against their wills, especially if they really don’t seem to be a danger to themselves or others.”
This is a tacit admission that forced drugging is not a treatment of a brain disease, but solely a government punishment for being found (extra-judicially) to be a “danger to themselves or others”. Of course, as usual, the “emergency room” psychiatry cult members, believe the appropriate response to a person “dangerous to others” (a criminal), is not jail, but forced drugging, and “danger to self” is just code for suicide prohibition, in a world where you’re allowed to smoke, eat, drink, and risk yourself to death in any other way, so long as it is a slow kill.
You’re allowed to climb Everest without oxygen, hang glide, cave dive, but God forbid you’re ever in the position of having an extrajudicial, due-process-free “determination” of dangerousness slapped on you by one of these quacks in an ER.
I find it interesting that Anchorage’s forced psychiatry facility gets first dibs on Anchorage’s distressed, and at the discretion of forced psychiatry’s overseers, a small trickle of crumbs might fall of the table.
Forced government psychiatry is the most impure, vile “system”, and getting into bed with it, is a big red flag for me. It’s inevitable, considering how Soteria has decided/can source its new residents, that someone has to have a relationship with the forced psychiatry practitioners.
An alternative, like Corrina West’s idea for an underground railroad network of private homes as crisis sanctuaries, seems safer to me than a place where there is a “directing clinician” and a suitcase of taxpayer dollars with the scrutiny that comes with that.
A place to simply be(in italics), which is what Soteria sounds like it wants to be, would seem to me to be a dangerous place for me to go in a crisis, if there’s a “clinician” there.
I’d feel about as comfortable smoking a joint at an outdoor rock concert, standing next to a cop armed with pepper spray, a taser, baton, and handgun, as I would “going through my process” in the presence of an individual who has shown they are willing to perpetrate forced drugging in the past, stands ready, willing and able, to call in the goons “if necessary”, and by this I refer to the “directing clinician (psychiatrist)”. Hypothetically, not PERSONALLY. I don’t “know” the Alaska Soteria psychiatrist, nor does anyone know who will be the Vermont Soteria psychiatrist. I’m talking ANY government psychiatrist.
Even if that psychiatrist appears to be “alternative”, I could never trust such an individual to be in my presence during a crisis. In fact the safest place to be in a crisis is as far away from psychiatry as possible, and as far away from government, and the government’s natural inclination to manage risk at the expense of individual rights.
A word on violence.
I found it interesting that the shooting death, was referred to repeatedly as a “shooting”, there is a big difference between a “shooting” and a killing. You could be shot once in the leg, and it would still be a mere “shooting”. As it happens, a young lady was shot four times in the head. She died later in hospital. From what I’ve read, there seems to be a problem with the geographic placement of the Soteria facility. It has neighbors who can see and hear much that goes on. It perhaps should have been in a more remote location.
I don’t think one death should mean the end of the program, just as many deaths (positional asphyxia and so on) that occur regularly in forced psychiatry’s mainstream facilities, don’t slow the machine of forced psychiatry down one bit. One death at Soteria Alaska is a tragedy, a million deaths in institutional psychiatry is a statistic. The ER staff have NO MORAL STANDING to judge Soteria Alaska for the crime of one murderer. None. None at all.
I find it surprising to be reading residents “could be very disruptive to the atmosphere of the house for a very long, and even seemingly indefinite, period of time.”
Why is there no security guard?/bouncer? why is there not an on-site safe with self defense weapons? even pepper spray? Why is this kind of “contract” being floated (“Would we have to contract with potential residents that one condition for staying at Soteria involved them agreeing to stay on their medications?” ), rather than a nonviolence contract upon arrival? Was the shooter a registered gun owner? If so why wasn’t this known. The entire idea of grouping perfect strangers together in a building, who are all going through a crisis, is suspect to me. It’s an idea that originated in the madhouse. The whole problem with violence in this environment, is that violence is seen through a ridiculous medical lens, and not for the criminal activity that it is. Even the shooter from the 2011 Soteria Alaska killing, is now in forced psychiatry, getting tinkered with, by the wizards of brain drugging “science”, rather than being treated as an ordinary criminal equal under the law with all other criminals.
It is very hard to provide organized, studied, government funded alternatives, in a world that believes criminal behavior is a problem to be solved with doctors and nurses, not police and jails, and in a world where families believe the emergency room is the “place to go” when their young loved one winds up in crisis. Only in a world where it was well known that Soteria was a place to go as a first line response, would you be able to get away from having to partner with government’s forced psychiatry staffers.
Tragically, this world didn’t organically grow into one where there are safe places to go in crisis, and instead a vast machinery of forced psychiatry terror has been woven into every community, based on psychiatry’s brain disease ideology and its attendant destruction of innocent life.
If society had developed organically over the past hundreds of years, into a scenario where parents and families knew there was a safe place to nonviolently persuade their loved one to go during a crisis, it would be a very different world.
This truth, is something I know the hardworking staff of Soteria Alaska understand, and they deserve to be admired for trying to create a beachhead in a cruel system of destruction and iatrogenic disability, that said, it is important never to forget the power of self-help, loving families, and personal, independent, nongovernment, crisis planning.
I admire you for trying to work in such a challenging task, and I wish you all the best.
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Thanks Anonymous, lots to think about in your response. Like you the ‘first episode’ label bothers me and seems to consign the folk who have more episodes to a lifelong label and requires enormous energy to extricate oneself from the system. As many members of my family have.
The government funding is an issue. The English Soteria Network have been sourcing other funding and donations to start up their soteria house:
http://www.soterianetwork.org.uk/
Scotland only has the Edinburgh Crisis Centre so far, which is a place of respite where people can self refer and carers also can access:
http://www.edinburghcrisiscentre.org.uk/wordpress/index.php/services/
I’m hoping for something alternative in my area of Scotland and working towards this while also activating for change in the psychiatric system.
I wouldn’t like to stay in a crisis centre where people were disruptive, neither would I like it for folk to be forcibly treated. Maybe you’re right about the use of force in psychiatry impacts on all services, including alternatives.
For me I have to both work for alternatives and agitate to see change in the psychiatric system, a two-pronged approach. Which means engaging with the people who have forcibly treated me and my family. It’s not easy. But I think it has to be done.
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hi Anonymous — I like many of the points you make. One thing I will say is that Soteria has tried to do its best to create a real and viable alternative to the traditional psychiatric and forced drugging system — and to try to help people get away from that system and avoid it if at all possible. That’s its basic reason to be. It’s just been very tough to implement. As to the idea of Soteria working with the traditional system: yes, that has its drawbacks, but if it didn’t it wouldn’t exist as a program at all, at least at this point. I myself prefer to work outside the system — but that has its drawbacks too….at least at this point as well.
About government funding: well, I don’t see that as inherently bad (though of course it can be very bad in many or most cases). But if government funding were inherently bad then that would invalidate some programs I really like in Europe, like Open Dialogue and the Family Care Foundation. And doesn’t the Hearing Voices Network get government funding in some places?
About the shooting death: yes, I probably erred (without realizing it) on the side of being euphemistic in my language. But the story is also quite public, and all over the internet, so I guess I figured most readers already knew about it or could easily find out more if they wished, and because it was such a horror. Meanwhile, because I spend a lot of time at Soteria, where that horror happened and where it remains a quite sensitive subject, I have fallen into what some might call the trap of using more gentle language… There was certainly no intention on my part to deceive. It’s just very complex to write about any of this at all — anything about this program. I hesitated for a while to write this piece, and would have found it easier to write nothing and just keep the knowledge I had about Soteria-Alaska private. But I decided instead to go for it, to the best of my ability.
One other thing: few people at Soteria (residents/staff) talk about “first breaks” and the like — frankly I don’t think they care about this at all in their day-to-day work, or use this kind of language. To them people are people, no matter what they’re going through. I just chose to use that “medical” language for the sake of keeping continuity with the language of people like Robert Whitaker, Loren Mosher, Jaakko Seikkula, etc. — but I see how it leaves me open to some very valid criticism.
all the best,
Daniel
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“About the shooting death: yes, I probably erred (without realizing it) on the side of being euphemistic in my language. But the story is also quite public, and all over the internet, so I guess I figured most readers already knew about it or could easily find out more if they wished, and because it was such a horror. ”
I know you weren’t trying to deceive. I wouldn’t beat yourself up about that.
It was a horror what happened. But it is important I feel to remember that deaths happen all the time in the mainstream forced government psychiatry system and it doesn’t cause THEM to stop and reflect at all.
A half-baked coroner’s report on being choked to death during restraint, has never been enough to stop forced psychiatry staff’s lust for forcible control of the distressed, at any cost, including death.
The whole M.O of forced psychiatry is about throwing the rights of the individual out the window in the face of a government/corporate risk management ethos.
You should never let people who get up in the morning and go and feed their family by, and stand perfectly ready, willing, and able to forcibly drug innocent strangers just because they don’t like what they are thinking, tell you Soteria Alaska is bunk on the basis of a media report about a killing. In fact, I’d interact with such people the way I do cops: immensely powerful people who you just be a “yes man” to, and fear, and if you need something from them, pay them lip service and try to get it, very carefully, they are very dangerous people, with very misguided views about the effects of what they get up to do during the day, and very misguided views about what “a job well done” is when they drift off to sleep at night. Forced psychiatry people are not to be messed with. But their views on what happened from the news, on the killing, are compartmentalized and placed in a different category in their minds, to the violence they carry out against their detainees every day.
The one person responsible for that murder was the murderer.
Not Soteria Alaska.
In fact, it is quite touching that this death touched Soteria Alaska so much, whereas the machinery of death that is mainstream forced psychiatry ER’s, it doesn’t cause them to lose a wink of sleep.
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Awesome comment.
Not sure if you are still here, but you are spot on.
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I’m touched by this article. It may indeed be that a place that best serves people with long psychiatric histories will be quite different from one that best serves people experiencing their first psychotic episode.
The article didn’t directly discuss what at rate medications at Soteria-Alaska were tapered (if at all). I may be mis-inferring, but are/were many of the people there just coming off the drugs cold turkey? That sounds like almost like a recipe for psychotic crises, as Whitaker’s book suggests. Were possibilities ever discussed of instead assisting clients with a much more gradual and individually adjusted taper?
Even if the current incarnation of Soteria-Alaska is potentially not the best setting for attempting that, I hope we can somehow discover what settings, and what time-scale processes, do offer the best hope for assisting those who want to successfully taper off of psychiatric drugs.
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hi Philroy,
From what I have seen and heard possibilities for tapering slowly were definitely discussed and encouraged, but many of Soteria-Alaska residents just came off however they wanted, and that mostly meant cold turkey.
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Hi Daniel
First of all, I love that Margaret Mead quote. and it is true!!! Every single change starts with a few people and the more we dare to accept that, the better chance for changes.
I am very happy that you have written this post and it is an important document no matter where we work, Soteria or not.
In a couple of weeks my work place celebrate its 25th anniversary.
One of the few rules we have had over the years is to try not to do things we dont believe in. That we stated already from the beginning. We told each other that rather than doing things we did not find good enough we should close down the shop if necessary.
Believe me, there have been times when I and my colleagues have been very challenged about that decision, but we have held on to it.
That does not mean that we have always done very good things and that we have not made huge mistakes, we have! Well, not THAT big mistakes, but you see what I mean.
But we have never sold our soul and the culture of our place. As for example, there have been times when it had been much more politically correct to shut our mouths instead of arguing against drugs. There have been times when it had been better not to talk that loud about not using psychiatric diagnosis, but we have talked about it. Loud at times.
Why? because it is our duty to tell about important experiences and to let other people know that there are other ways to do the work.
As Lauren Mosher did when creating Soteria and as lots of other peoople have done during history.
And aS YOU DO NOW!
There is always this balance about our own needs and comfort life and the need of others.
In the best of worlds we would always do the best for the other, but that is not how life use to be. Still, we continue to dream, and work and write and argue. Some of us more than others.
When you now discuss these issues the way you do, you also take a risk. For yourself but also for Soteria Alaska.
There is a risk that people who dont want places like Soteria and my work place will find arguments to say LOOK WHAT THEY DO AND WHAT THEY DONT DO!!
That is a risk we have to take. Tom Andersen, one of my important persons used to say that we need to go into the margins and to look to be able to look at the mainstream. But we must not stay there too long, because then we take a risk to become mainstream ourselves.
I hope this is possible to understand in my not very excellent English.
Sometimes I get “accused” of thinking that love is enough when meeting people having huge troubles. I dongt find love enough. Unless we dont mean that love is also to argue, to challenge, to be hard, to say NO.
I still love my work, not at least since it makes “use” of other peoples committments,solidarity, openness, recognition, and collaboration. The fact that some people invite a totally strangefr to their home.
But I have also experienced over the years the importance of a peaceful place, a place with very clear frames and where people know what is ok and not. And where people know they are not left alone when too hard.
Well time for me to stop by now, sending my wishes to you and to others who keep on working, and by doing so challenge both ourselves and the others.
Thanks again Daniel for a very brave and wise post.
Carina
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This is not bad English at all.
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Biopsychiatry, coupled with the toxic drugs and with SSI have created another problem for people who have been in the system for a while. The system has created a huge group of people who work from “learned helplessness.” This is especially true for people forced into the system as children or teenagers. They’ve never ever really had a life of their own, through no fault of their own. They have little experience with working, few have even tried to go to college for an education, and they have no hope. Many of them have finally accepted the “You have a broken brain and need the meds for life” quackery and this is entirely understandable since they’re bombarded with this message from all sides all of the time. They live in substandard housing or they are forced through the “revolving door” of the state hospitals every few months. Or, they sit in our jails waiting to be forced through the revolving doors by the so-called judicial system. The system has taught them to look to it for everything and they’re forced to let it make all of the decisions for them, whether they like it or not. They don’t eat right because SSI really doesn’t pay enough to live on; it pays just enough to exist on and there’s a big difference. On SSI there’s no extra money to go out and do social things; even movies are too expensive to attend and if they go to the public library to work on the internet people tend to give them the eye and shy away from them.
I would never be one to say that Soteria has nothing to offer this group of people but I know from experience in “walking with them on their journey” that it’s extremely difficult to unlearn the helplessness. I work in a state hospital. I asked two gentlemen what they did when they weren’t in the hospital. Did they fish or garden or read books or visit with friends? They answered my question by stating that they were “patients.” I tried all kinds of ways of asking the question to make sure we weren’t getting our communication crossed and every time the only answer I got was that they were patients. I finally asked what their dreams and hopes were. One told me that he had no hopes and dreams. The second man sat for a while thinking and then said, “I never thought about having any hopes and dreams.” I went home very sad that afternoon.
So, I think the challenge is to somehow create other programs better suited to walking with this group as they try to find their way out of the quagmire of this unholy system. I don’t know yet how to walk with people in a way that will empower them to unlearn the helplessness that the system has so very proudly instilled in them. I sit and ponder a great deal of time.
Thanks for all of the great work that you’ve done and continue to do. I particularly like the little songs you’ve written and sing!
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The songs are (censored) brilliant. Especially the one called bullshit. Absolutely brilliant.
It is important the psychiatry survivors develop their own cultural artifacts like songs and so on.
And I’m not talking about the “token” paintings and drawings that the bioquacks “let” a “patient” put on the cover of their pharma funded “peer reviewed journals”.
Now that’s a joke, “peer review” in psychiatry. It means make sure one quack’s quackery journal article, is up to the discerning standards of his or her fellow quacks. Quacks keeping an eye on each other, like a veritable duck farm, so audible are the quacks, so incessantly noise polluting. Like factory farmed quacks. Quack Quack Quack.
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Quack, quack, quack…!!!!!!! This is all I’ll be able to think of when I go to work this morning and see any of the psychiatrists and psychologists that work where I do! Sheer quackery, every last bit of it! Noise pollution of the worst kind!
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Stephen — If you have had any new thoughts on how to walk with people who have no hopes or dreams, please share them. This is what has become of my daughter in the past few years. I’m struggling to help her as she lives with me, but I don’t really know how, and I don’t know if I’m doing the right things. I’m desperate to find a program that can help her find her way back to life — that will give her the time it takes to get off these drugs safely, whether it is months or years — and stay with her when she cannot talk or think or feel very much. However long it takes.
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