“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.