My friend David Oaks, director of MindFreedom , likes to say that what is currently needed is a non-violent revolution in mental health care. Mental health “reform” too often amounts to no more than “re-arranging deck chairs on the Titanic”. Yet while revolution may be what is required to create a truly healthy and empowerment oriented mental health system, each individual interested in such change usually has limited power to create it. Starting from where they are, what can individuals do to work toward such a revolution, while also helping those people who need assistance right now, and while balancing that with caring for themselves, and perhaps even earning a living?
I am happy to be invited to blog here on Mad in America, and I hope to use this first post of mine to describe my personal answers to the above dilemma. I will outline the life experience that led to me getting interested in mental health change, and then the various openings I have found to start creating such change as both an activist and as a mental health professional. I am writing to join with others who have shared their stories, in the hopes that all of these stories will in turn inspire more people to do their own part to create the revolution that will bring real science, wisdom, and humanity into mental health care.
Like many people who later experience mental health difficulties, I had a lot of trauma in my childhood. As do many traumatized children, I internalized much of the oppression, resulting in a defective identity and difficulty making social connections.
I began my senior year in high school in 1972, the year the 60’s finally made it to my small town in Michigan. Being a “freak” was suddenly a good thing, and people were experimenting with sharply different ways of seeing themselves, though this was mostly limited to taking drugs that opened their minds for no more than a few hours. I quickly identified with this movement but saw reason to take it much further: I saw it as a chance to be completely reborn or remade, to re-invent myself, and eventually to re-create the world as well.
From a psychiatric point of view, I was getting a bit “grandiose” or even “psychotic.” I was not unaware of this, as I was studying psychology at the time, but I was also reading about alternative views of psychosis from people such as R. D. Laing who saw it as a possibly positive journey. I was lucky enough to be able to discuss this with people such as my best friend at the time, a guy with his own “wild mind” with whom I worked at a nursing home that cared for many psychiatric patients, as well as with a thoughtful psychology professor at the first college I attended. This professor informed me that he had been asked by the administration to watch out for young people who might be becoming psychotic, and that he was currently watching two people, with me being one of those; but he also said that he could see that I was currently getting by adequately and did not need an intervention. Instead, we had long talks about the nature of reality, madness, and society, and I learned that I could make some sense out of my far out perspectives within such dialogue.
The sense that the journey could be positive kept me from developing an excess fear of madness. Research suggests that such fear typically contributes to madness itself (Hirsch and Jolley (1989)). One reason for that may be that the fear contributes to increased emotional arousal which in turn creates more “symptoms,” and this increase leads to more fear, etc., in an a vicious circle. Another function of the fear of madness is to shut down curiosity and the willingness to explore divergent perspectives: but while such curiosity may have a dangerous side when it leads a person into exploring “mad” ideas, it also is vital for preventing getting stuck in “madness,” as that same curiosity is required in order for a person to look critically at his or her “mad” thinking and eventually to transcend it.
I do recall at times having some intense fear of being truly seen as mad by others, and being dismissed as non-understandable, and denied the sorts of relationships that could affirm my newly emerging identity. But I also feared being “normal,” not just because I sensed that “normal” culture was sick, but also because when I thought “normally” I felt defined by my past, and since my past was traumatic, that felt terrible. Instead, I was fortunate enough to find people who could see me as “mad” in an interesting kind of way, and who had their own interest in challenging personal and cultural identity.
It was a time for many people to question the nature of reality, and I was fortunate enough to get involved with (and be tolerated by) groups such as the Institute for the Study of Consciousness founded by Arthur Young. I learned it was possible to challenge the limits of everything we thought we knew, and at the same time think systematically.
Another group I got involved with was the San Francisco Suicide Club (the precursor group to the Cacophony Society, which in turn was the group that took Burning Man to Nevada, with my good friend John Law playing a key role in that.) In the Suicide Club, we aimed at bizarre adventures, while needing to develop good communication and discipline in order to carry these off successfully. That is, in order to share our creative madness with others, we had to learn how to successfully sharpen our “sanity” – for example we had to be able to deal with the technical challenges of dealing with exploring abandoned buildings, climbing bridges, etc., as well as the social challenges ranging from interactions with police to the dynamics within our own organization.
One of the events I led for the Suicide Club was a "mental health tour" of San Francisco. The way the tour worked was that some of us played the part of mental health professionals, while others played the role of "patients" who were on tour. Since the "patients" were already being "supervised" by "professionals" they could act as crazy as they wanted, without having to worry about being taken in by the mental health system, since they already were "patients" under control of "authorities." Good fun, but also a metaphor for the whole notion of exploring madness within a safe container, a concept that needs to be better understood within mental health treatment generally.
Family Mental Health Problems:
While I got through my “mad” exploration of identity and reality in a fairly successful way, without having any mental health treatment until I sought counseling in my 30’s to deal with unresolved trauma issues, many of my siblings did not fare as well. Some were forcibly hospitalized, and while some managed recovery, not all did. Yet, I could see that the basic outline of their journey was the same as mine – they were chaotically attempting to find a way of being in the world that made sense even given the traumas of their upbringing, and they were doing that without finding the supports that I was lucky enough to have found in my journey. But as Eleanor Longden says, good mental health outcomes should not depend on one being lucky enough to find exceptional supports: they should be what our system is designed to produce.
Becoming an Activist:
Moving away from San Francisco to help raise my child, I I eventually arrived in Eugene Oregon. I met David Oaks in the 1980’s as he founded what became MindFreedom, which still has its home office in Eugene. Though I was working at the time in fields totally outside mental health (first as a woods worker, then as the financial person for a worker owned construction company,) I slowly began speaking out against, and protesting against, the status quo in mental health care. This took years to develop, as my interest waxed and waned, but I was gradually drawn into more activism.
What motivated me was the understanding that people similar to myself (including my own siblings) were being misinformed about what they were going through by a system that failed to understand the process, by a system that saw only bad in a process that I knew from my own personal experience could also be good. The “treatments” that were then given were ones that suppressed the person along with the problem, and that didn’t open any doors to real healing, or even imagine that it was possible.
In the earlier days of my involvement, I would just attend events as a spectator or volunteer at mailing parties. But then, I began participating in some protests, and also speaking to the public, and writing editorials for the local paper.
Currently, I work as a coordinator for our local chapter of MindFreedom. We lobby for positive changes in mental health treatment locally, applying political pressure; for example, we organized to get a city council resolution supporting mental health empowerment. We play a major role in creating progressive discussion in the community about mental health issues through the Opal Network, which brings together consumers, survivors, family members, professionals, and other interested parties, all around a mission of supporting the voices of consumers and survivors. We have lectures, discussions, and also movie showings, to address important issues. We also create protests, often using humor, to have fun and point toward needed changes – the Normathon, in which we all worshipped a giant pill, is only one example.
Becoming a mental health therapist:
I started doing volunteer work in the 1990s in mental health, and then began a graduate program in social work in 1997. Social work school provided a reasonably good overview of how to help people with mental and emotional problems, that is, except for people whose problems happened to be severe. Then, we were told, the problem was really biochemical, and we had to make sure they were given medication, and we learned nothing about how to apply our basic understanding of human beings to resolve their problems. The professors either didn’t know how to, or didn’t dare, challenge the psychiatric orthodoxy about problems like “schizophrenia.” I graduated in 2000, and immediately went to work as a mental health therapist working in an outpatient clinic with a mix of adults, children and families with a wide range of mental health issues.
While I spoke out some during my education, internship, and early employment, I mostly kept a low profile, so I did not threaten those who were educating me by appearing confrontational. In retrospect, I think that was a good strategy, as it allowed me to focus on my own learning and to establish my credibility as a therapist.
A few years into my career, I was ready to take on something more challenging. I had read about a new approach to hearing voices in the work of Paul Chadwick, who had researched groups for voice hearers run by professionals, using a CBT for psychosis perspective. I emailed Paul and asked for particulars on his methodology, and he was kind enough to email me back with a complete guideline, which I then took to the manager of my agency and to the county mental health department, suggesting that I be allowed to organize a group. At this time, I had no professional experience working with people who heard voices or who were diagnosed with such things as “schizophrenia” but I was lucky in that the manager of my agency, the late Martin Waechter, was a courageous guy who believed in supporting people in doing what they were passionate about, and the county was cooperative, so the group was formed. I soon after learned about the Hearing Voices Network, and began incorporating their insights and methods into my groups as well.
I also began studying CBT for psychosis in earnest, reading lots of books and beginning to practice individual therapy with people struggling with psychotic experiences. To avoid being alone in trying to make sense of this work, began making monthly contact with a consultant from the UK, Pauline Callcott, who was an expert in CBT for psychosis. I found the fact that CBT for psychosis is well researched, or “evidence based,” was really helpful in explaining my work to other professionals, many of whom had been taught, erroneously, that psychotherapy with people diagnosed with “psychosis” or “schizophrenia” was generally ineffective. I also found that CBT for psychosis as a method was highly compatible with the recovery movement in general, and some of the latest developments in CBT borrow very directly from that movement.
While I believe CBT is a great approach for “extreme states” such as those that get called psychosis, I am aware that it isn’t perfect. Often CBT in general is taught in a somewhat narrow, dogmatic way, and some CBT practitioners see their role as being to reinforce traditional mental health approaches, including concepts of biological illness and “medications adherence” for life. But the best CBT practitioners rise well above these defective approaches, and that is the part of the tradition that guides my practice. I also see the heart of CBT, “balanced thinking” as being very compatible with the aim of the Open Dialogue treatment model. Open Dialogue treatment has a remarkable success rate while being entirely non-dogmatic, as it aims simply to establish dialogue within a person’s social network. I see this as essentially the same goal that CBT has in individual work of helping a person create a thoughtful dialogue within themselves, where different points of view can be explored.
Handling the Medication Issue:
One issue I had to confront in my work was how to handle the issue of medications. As a non-medical professional, I was supposed to leave the medicating up to the medical people. Or rather, what I was trained to do was to be very forthright in steering people toward medical treatment, as in “perhaps this is biochemical and you should go see a psychiatrist,” but I was never supposed to steer anyone away from medication, as that would allegedly be dangerous and outside the scope of my practice. And yet, I knew people were being routinely lied to and made dependent on medications that in many cases were not helping or were making things worse.
While I can’t say I have developed the perfect approach to this dilemma, I have learned to take a role of supporting people to make their own thoughtful evaluations of the use or non-use of medications. Instead of encouraging people to stay stable by staying on medications as the doctor prescribes, I suggest they can decide for themselves, but that they might be wise to make changes slowly and in conversation with various people including their prescriber. By supporting a person’s own choices, I don’t take a medical role, but only the standard role of a therapist in helping a person to become aware of, and to choose from, a range of options. This is tricky, as people’s ability to be thoughtful is frequently impaired by a number of factors, including their own mental health problems, the high volume of available misinformation, panic and pressure from people in the family, other professionals and people in their social network, as well as the brain numbing effects of many of the medications themselves. But it is often possible to make substantial progress on this issue: I have written more about this in my Guide to therapists in helping clients rely less on medications.
Changing the System through Education:
After a couple of years of organizing a voice hearers group and practicing CBT for psychosis, it was obvious I was bringing something really new to the community, and so a local managed care organization, LaneCare, agreed to sponsor a seminar for me to teach cognitive therapy for psychosis to other professionals. This was a success, so I began doing more seminars, first just on cognitive therapy for psychosis, but then later adding a second day focusing on the (often denied) relationships between trauma and psychosis and how to help people who had experienced both. I have sometimes been sponsored by professional groups, or by universities with continuing education programs, and I have sometimes organized such seminars myself. I have now taught hundreds of professionals in a number of states, and I know at least some of these professionals are doing more progressive work as a result.
I am currently working with an organization, The International Society for the Psychological Treatments of the Schizophrenias and other Psychoses, US Chapter (ISPS-US), to organize web-based trainings on psychological approaches to psychosis that will be available to professionals everywhere, providing CEU’s, etc. I am chairperson for their education committee, and we are hoping to have such trainings become available later this year. I think the web approach will be particularly helpful for this topic, as people interested in learning alternative approaches are frequently very spread out geographically, and traditional organizations in many areas are often afraid to sponsor alternative approaches. Those who want to be notified as these trainings become available can email me about their interest. (The yearly ISPS conferences, and local area meetings, are another good way to learn about psychological and social approaches for psychosis.)
I also function as co-moderator for the listserv of ISPS-US. This email discussion group covers a wide variety of topics related to the nature of psychosis, treatment, and recovery, and is a great place to get feedback on ideas or learn about new resources.
Speaking out about the need for change can be risky in a mental health system that often reacts very defensively to criticism. In some ways, working to change the mental health system’s beliefs and practices is very much like working to change the possibly unhelpful beliefs and practices of a person diagnosed with psychosis. A direct assault on the beliefs of any human is likely to result in a defensive reaction that often leads to those beliefs becoming even more entrenched. Yet going along with the beliefs as if they were true, or collusion, also strengthens those beliefs. So what is a person to do?
In cognitive therapy, the aim is to identify the distress of the person to be helped, and then to engage in an open minded discussion that looks at all the evidence in order to better understand the distress and what can be done about it. In this exploration, both the pros and cons of any belief can be explored, working with the middle ground between confrontation and collusion. One comes across as uncertain, but curious, and persistently interested in exploring questions not resolved by prevailing dogmatic explanations.
To apply these methods to mental health system reform, it makes sense to first look at the areas in which the current mental health system is aware it has a problem, and then start looking to better understand those areas and to provide methods to improve outcomes. Two problem areas even biologically oriented psychiatrists can acknowledge for example are how to help people with “symptoms” that aren’t helped by medications, and how to help people who refuse medications. Once methods are introduced that can address such problems, one has credibility to ask other questions, such as how might we help people who currently are getting excess side effects as a result of medications, or whether we might improve outcomes if we do better at identifying people who may be able to recover without ever starting medications in the first place.
In working with people with beliefs that may be delusional, it is important to be humble and keep an open mind, exploring the evidence rather than just insisting that our own conclusions are correct: often a detailed review finds that there is at least some grain of truth to the belief that sounded delusional, or the belief is a metaphorical expression of some truth even when it is not literally true. I think it helps when we reformers keep the same sort of open mind and attention to the evidence when we engage in dialogue with those who defend extreme biological beliefs or the status quo. Mental health questions are very complex, and often even those who are wrong about many things are right about some, and we all need to be learning as we go, even from our “opponents.”
It is not always clear how to find this midpoint between confrontation and collusion when dealing with the mental health system. For one thing, it is very difficult to do so when speaking to a group, which may have very different people reacting in very different ways. At one point, I was even “laid off” for no good reason from a part time job, after a new lead psychiatrist took offense to hearing my opinions which were expressed to a group of which he was a member. In retrospect, I might have had more influence by speaking out more cautiously. But while speaking out about problem areas in mental health care is risky, just colluding with defective care is not only risky but unethical. We all need to keep experimenting to find ways to speak out which allows our message to get across.
Advocating for Change through Blogging:
I find psychosis to be a fascinating topic, which reaches into the core of what we understand about our own existence and the nature of reality. Far from being a simple “illness,” mad experiences have within them the seeds of, both the best and the worst of what is possible for humanity. While ideas about a possible positive side to psychosis have been criticized as being misleadingly “romantic,” there are now lots of scientific studies that are starting to explore what madness and successful creativity have in common.
Once we grasp that psychotic experiences are complex and multi-faceted, it becomes apparent that the mental health system should really be focused on helping people access the best of these experiences while leaving the worst behind, so that these individuals can eventually make their own unique contributions to the world instead of being labeled as permanently disabled and inferior.
I have been writing about these and other sorts of ideas for years now on my blog http://recoveryfromschizophrenia.org/ and I will now be contributing articles here at Mad in America as well. I appreciate your interest, and I hope you find some of my perspectives helpful as you discover your own ways to work toward positive changes in mental health care.