At least as of today, if a person Googles “schizophrenia recovery” the first link that is not an advertisement is to a document titled “Understanding Schizophrenia and Recovery” authored by NAMI.  (I would link to it for your convenience, but I hesitate to do anything that would further increase the Google rankings of a site that claims to be increasing “understanding” yet seems more dedicated to deliberately distorting the facts.)

I’ll start with a disclaimer.  While I am seriously challenging the national organization of NAMI that is responsible for the document under discussion, I am not expressing an opinion about any local NAMI chapter.  Local NAMI chapters have some degree of independence from NAMI national, and some of them are fairly progressive.  But hopefully NAMI chapters that wouldn’t spread misinformation will do more to challenge the national organization that seems only too willing to lie to the public.

NAMI’s propaganda efforts start within the title of the document, which is:  “Schizophrenia and Recovery;  What you need to know about this medical illness.”  NAMI is implying that it is a fact that “schizophrenia” is a “medical illness” and wants us to think that it is not in any way an understandable reaction to life events; but there are actually large numbers of both research studies and individual stories that point to the opposite conclusion.

The next sentence spreads more confusion, with its claim that “Schizophrenia interferes with a person’s ability to think clearly, manage emotions, make decisions, and relate to others.”  NAMI wants us to ignore the possibility that the person diagnosed with “schizophrenia” may be having problems with thinking, emotions, decisions and relationships because of what happened to them and how they were treated, and wants us to think that some theoretical “illness” called “schizophrenia” did it instead.

It is worth reflection on the likely consequences of telling someone that their experience and behavior is definitely being caused by a “medical illness,” and not by what has happened to them and how they chose to react to it.  A very probable effect of this sort of “explanation” is the creation of confusion within the person that in itself is likely to interfere with that person’s ability to handle thinking, emotions, decisions and relationships.  Of course, if the NAMI explanation creates more difficulties for the person, those difficulties will also be attributed by NAMI to the “illness” and not to the misinformation.

On page 2, it is stated that “Research has linked schizophrenia to changes in brain chemistry and structure….”  Reading this, one might assume that changes in brain chemistry and structure have been found to go along with “schizophrenia” in the same way that having high blood sugar goes along with diabetes, a condition NAMI suggests in the next sentence is “like” schizophrenia.  But this simply isn’t true.  Instead, researchers have only found that the people diagnosed with schizophrenia are LIKELY to have brain differences compared to the AVERAGE person who doesn’t have the diagnosis:  many people diagnosed with schizophrenia don’t have the differences, and some people not diagnosed do have the differences.  And it isn’t clear where all the differences come from:  someare likely caused by the drugs, others by being inactive, and most all of the differences have also been found in people who suffered abuse in childhood.

This last issue, abuse in childhood, is something NAMI clearly doesn’t want anyone to associate with “schizophrenia.”  NAMI states definitively in the next paragraph that “Schizophrenia is not caused by bad parenting….”  NAMI makes this statement despite what is now a very large amount of research that shows that abuse in childhood dramatically raises the odds of getting a diagnosis of schizophrenia in adulthood.  This applies to all types of abuse:  neglect, physical abuse and sexual abuse.  More severe levels of abuse have been associated with more severe levels of later psychosis in all the studies that looked for such a “dosage relationship.” [continue reading…]

According the the UK group Mind, “Schizophrenia seems to affect roughly the same number of men and women. Most people diagnosed with schizophrenia are aged between 18 and 35, with men tending to be diagnosed at a slightly younger age than women.”  Why?

The mainstream mental health system just claims that it is the nature of “illnesses” like “schizophrenia” to strike at a young age.  I haven’t heard much about how they think this works, but the standard consensus is that the cause is “the illness.”

A more likely explanation I think comes from examining some other phenomena that also tends to hit at a young age, that is, the phenomena of creative achievement, and involvement in crime.

It may seem odd to start with to consider a possible connection between creative achievement, which we associate with the most worthwhile aspects of humanity, and crime, with which we associate with the worst in humanity.  But recent studies, reported by Scott Barry Kaufman in his article The Dark Side of Creativity, show a pretty strong connection between creativity and a willingness to be dishonest or unethical in order to advance one’s own interests.  One study even showed that just offering suggestions to people that encouraged their creativity also made them more dishonest.

Another earlier article, “Why productivity fades with age:  The crime–genius connection” also addresses this connection between creativity and crime, and shows that both creativity and crime are much more common in younger people, and have to do with a developmental stage where young people take risks in order to find their place in the world.  In other words, its a normal process in our species, experienced more by some than others, which can come out in either a positive or a negative way.

This data also suggests that the peak is earlier for males, in regards to both crime and creativity.

So how does this apply to psychosis?  There is a lot of evidence that creativity and “mental disorders” such as psychosis are related:  see this article.  When creativity is turned toward crime society suffers, but it appears that creativity can also be mismanaged in a way that results in problems for the person themselves, and the result may be called “psychosis” or “schizophrenia.”   This happens mostly in young people not because of an “illness” but because it is young people who take the wildest risks in order to find their place in the world (and young people who have a prior history of trauma may take some of the wildest risks, or do so with really inadequate support.)

Those who favor the illness model might point out that while being creative or criminal often peaks and then fades, “mental disorders” often last a lifetime.  But this also could be understood by seeing the psychosis as result of experimentation in creating altered views of self and world, experiments that at least so far have led to more trouble than success.  Once a person has created such altered views, they may stay in them or just get further lost, if nothing happens to help them in a better direction, and if the “help” that is offered is in fact unhelpful, as it too often is.

As time goes on, people may organize themselves to attempt to suppress their own creativity, since it seems it was their original thinking that got them into trouble.  And the mental health system may operate along the same lines, giving drugs that suppress spontaneity and creativity, and convincing the person that they are “ill” so that the person does not put much faith in anything that emerges from their own mind.  But this disconnection from one’s creativity, while it seems to be reducing risk, may be cutting the person off from a resource that would be vital in recovery.

We need a mental health system that recognizes both sides of creativity, the good and the bad, and that can collaborate with people in finding a way to creatively overcome past mistakes rather than just suppress the kinds of original and creative thinking which in fact are vital to the person and in the long run, to society as a whole.

When we think that something inside of ourselves is a “symptom of an illness” then we very naturally want to get rid of it.  But what happens when what we are trying to get rid of is actually a vital, if not always helpful, part of ourselves?

If you look into the very origin of the word “schizophrenia” you will see that it relates to the “splitting of the mind.”  But if the problem is the existence of a split, then it follows that the solution would be a bringing back together, not a getting rid of.  Yet, the mental health system has been obsessed with getting rid of voices, and with getting rid of thinking that comes across as delusional.  Fortunately, more and more consumers are speaking out about how unhelpful this is.

Efforts to get rid of voices for example fail in two different ways.  One way is that the person takes lots of medication to try to do in the voices, but then suppresses most of themselves in the process – and often the voices continue regardless.  The other way they fail is that efforts to get rid of the voices often just antagonize them, make them nastier, and prevent the person from ever looking at the undealt with issues that stirred the voices into action in the first place.

A better approach to voices is to set appropriate limits with them, but also be friendly and open to dialogue at appropriate times.  This is a kind of peacemaking and healing, very similar to what works with say family or neighbors one is trying to make peace with.  It only makes sense that if the goal is to overcome splits, to integrate, that a certain amount of friendliness and even love is required.  A person who is curious about what a voice may be trying to accomplish for him or her may discover that a critical voice is actually attempting to protect him or her, even if in an overzealous and ineffective way.  (Many of us have had critical parents who made similar mistakes.)  Voice hearers are starting to tell their stories of shifts in their relationship to their voices, where friendships are made with voices or parts of themselves that once came across as immensely nasty and destructive.

Similar shifts can occur in a person’s relationship with thinking that once came across as “delusional.”  Again, the idea is to set limits with the “delusional” thoughts, to avoid taking them completely literally when there are problems with the thoughts, but to also be friendly toward them and look for what might be of value in them.

A recent blog post links to a NY Times article about this sort of approach to delusional thinking.  The article quotes a colleague of mine, Paris Williams, who is a survivor and a professional who is currently writing a book called “Rethinking Madness.”  Given what I have seen of his work so far, this will be a book to watch out for.

Often, so called “delusional thinking” carries some “big idea” that can really transform someone’s life if they find a way to find meaning in it without expecting it to be totally literal.  Framing such thinking as “illness” just makes people turn against their own thinking, rather than helping people get into what is helpful about it.  Then, when people end up demoralized and apathetic as a result of being alienated from their deepest source of inspiration, which they now view as illness, the demoralization is called a “negative symptom” and itself is imagined to be part of an “illness”……..

While the mental health field is just starting to acknowledge that “madness” or psychosis is often a response to trauma, I think it is important to notice that it often has other dimensions, such as a search for a deeper meaning than what is often provided by a given culture.  (Of course, these two things are often related, as a traumatized people people are more likely to be looking for deeper meanings than what they found in their defective upbringing.)

The following story, by Jason Smith, illustrates how “madness” can be a profound inner journey that can lead to great insight, even if the person is managing their life very poorly in the present.  I think an advanced mental health system would mimic traditional cultures and would respect the potential value of such states, helping protect a person while he or she is not able to handle themselves, while also respecting the potential of the process if the person is supported in a good way.

A significant region of existential crisis in psychosis concerns the relationship between one’s mind and one’s body, objects and other people. So I think the underlying philosophical premises in relation to the mind-body problem of any sort of treatment are an important aspect of how the consumer will respond to it.

Panpsychism or panexperientialism (roughly the view that consciousness or protoconsicousness is a fundamental and ubiquitous property of nature), although long regarded as too “kooky” to be given serious consideration, has now become quite a respectable position in contemporary western philosophy. Leading analytical philosophers sympathetic to this position include David Chalmers and Galen Strawson.

In terms of my own story, my interest in panpsychism had its genesis in reading of Nietzsche’s ontology of the “Will to Power”  in my final year of an undergraduate degree. I substituted will to power with emotion and arrived at the metaphysical position that “everything is emotion”.  About one week after writing an essay on the topic I entered a psychosis which included some quite sublime moments.

No doubt my interpretation of things involved a conflation and confusion of “inner” and “outer” worlds, but nonetheless it assisted me in providing a framework for understanding what was going on. At times I was experiencing everything as a field of affect-laden sensation, with no divergence between inner and outer,  appearance and reality, subject and object. Although this apprehension was more than I was capable of dealing with, the Buddha’s words in the Bahiya Sutta resonate with what I felt:

Looking over my hospital notes from the time, I am struck by the contrast between the intensity of what I was feeling and the drab and clueless preoccupation of the system with “appropriate behaviour” and finding the right label to apply. The psychiatrist wrote that my “philosophical beliefs were so complex I am unable to be sure they are delusional”, whilst the psychologist, a stiff-necked man in a suit, wrote that my views “appear to be quite incoherent and without serious content”.

It was only many years later that I felt inclined to explore philosophy again in depth or to attempt to disentangle the delusions and grandiosity from what may have been of lasting value in my unmethodical ramblings and intuitions. I found that the speculative metaphysics of Alfred North Whitehead, was not too dissimilar from the position that “everything is emotion”. Since then, I have researched panexperientialism further and have found it to be a position which negates the barrenness and sterility of physicalism without  discarding rationality or embracing woolly thinking.

I could be wrong, but I think one of the things that has kept me well for the last 18 years has been breaking free of the  dominant Weltanschauung that consciousness, if it is imputed any existence at all, is presumed to somehow pop out of the mechanistic workings of the brain.

It would also not surprise me if the troubled and somewhat schizoid prevailing Western views of mind and body may have something to do with why there are better outcomes for people with psychotic illnesses in developing countries.

I am writing this for all those who have grown up with abuse and bullying, and then spent years being “treated” by the mental health system, but treated in a way that itself came across as bullying, and then committed suicide as a result.

Mental health workers are in a tricky spot, in that the people who come to them may be suicidal, and so coercion at some points (to prevent suicide) may be necessary.  But too often in our system, coercion becomes the rule rather than the exception.  This means that people who have emotional problems because of trauma and abuse and bullying end up experiencing the mental health system as just another bully, as one more bit of proof there is no safety or love available in this world.  Then when such people do commit suicide anyway, it is blamed on their “mental illness.”

Mental health bullying takes many forms.  It starts much like schoolyard bullying – with name calling.  A person finds they are now a “schizophrenic” or a “borderline”  Any ability to establish one’s own identity is taken away, “we know your problem is due to your genes and your biochemical imbalance.”  Any understandable reaction to past trauma or abuse is defined as personal defect or illness, not as a sign that something wrong had been done to the person.  The person is misinformed in a way designed to make them do what the system wants.  If the person does not comply, they are first threatened with force, and then if they don’t comply, brute force is applied, in the form of restraints, seclusion, and chemicals that penetrate to the deepest level of a person’s being.  If the person fights back at all, that is taken as a justification for increasing the intensity of the bullying.

It doesn’t have to be this way.  The mental health system could be based on respect for people, which starts with respect for a person’s own sense of what is healing and what is not.  Then people who have been bullied in life, and who have problems as a result, might find that bullying ends, and healing begins, when they get to the mental health system.  That’s the way it should be.

I also had a brother who committed suicide.  Before he did it, he never even explained to anyone why he was unhappy, but I think I know why.  He was a victim of bullying and abuse as a child, and then as a young adult, he saw an older and a younger brother who did enter the mental health system and who were treated poorly by it.  So he didn’t exactly have an impression that there was somewhere safe to turn for help.

Mental health bullying affects more than just the people who are direct recipients of it.

Let’s speak up for the end of bullying!

Lady Gaga did the performance below especially for one very young victim of anti-gay bullying, but I think it says something for all those who despair after bullying of a whole variety of kinds.

http://www.youtube.com/watch?feature=player_embedded&v=aER4KfBvpwA

Anyone who attempts to list a “hearing voices” group at the new Hearing Voices USA website will find that they are asked if their group assumes that “voices, visions, and other experiences are real” or if the group assumes that “voices, visions, and other experiences are imaginary.”

In this case, it seemed clear that the answer the website owners wanted was that the group assumes that “voices, visions, and other experiences are real.” [Actually it turns out that the website owners are just looking at this as one clue about how the group views voices, and they don’t make any decisions based on just this question.  See the remarks by an HVUSA person in the comments section.  That’s why I changed my title to say that my disagreement was “mostly imaginary” as I had just imagined how they were using the answers and I wasn’t correct.  I still think that the question of whether voices are best seen as real or imaginary is an interesting one, and that my angle on this is different than the official hearing voices network position, so I encourage people to still read this post.]

While I am all for the hearing voices movement as a whole, and I’m really happy to see additional work going into organizing the hearing voices network in the US, I have a lot of problems with this question being used as a screening criteria to determine which groups are acceptable to the network.

For one thing, it seemed wrong that people were being asked to choose one or the other:  but why should a group be rejected if it doesn’t make an assumption about whether voices are real or imaginary, but leaves it up to each participant to choose for themselves?  After all, that would be consistent with the hearing voices approach to other aspects of voice hearing experience, where multiple points of view are respected. [continue reading…]

Here’s this from Hearing Voices USA:

We are pleased to announce that – in honor of World Hearing Voices Day
– the Hearing Voices Network USA has chosen today, Wednesday,
September 14th 2011 to officially launch our website at
www.hearingvoicesusa.org.  We are joining countries across the world -
including Australia, Greece, England, Wales, Denmark, the Netherlands
and more – in finding a way to recognize this important date and
celebrating the diversity of our human experiences.

Meanwhile, Ron Coleman, a voice hearer who long ago ceased being a psychiatric patient and became a leader of the hearing voices movement instead, will be doing another tour of the United States in October.  One place he will be is Ann Arbor Michigan, where he will be doing a 2 day seminar October 10-11, 2011.  I hear there is still plenty of room for anyone who is interested.

He will also be doing a one day seminar here in Eugene Oregon, on October 19, 2011, sponsored by LaneCare.

In a recent article, “Form of CBT Can Improve Stubborn Psychosis Symptoms“, by Mark Moran, it is stated that

Patients with schizophrenia having the most severe negative symptoms appear to endorse certain defeatist and asocial beliefs, as well as have low expectations of success or pleasure, characteristics that may be amenable to a form of cognitive-behavioral therapy.

That’s important because the severe negative symptoms of “deficit-syndrome” patients have been presumed by some to be the result of neurobiological deficits that often do not respond either to antipsychotic medication or to standard psychosocial treatments. The “deficit syndrome” is thought to characterize a pathophysiologically distinct subgroup of patients with schizophrenia whose negative symptoms—blunted affect, anhedonia, avolition, and asociality—are enduring features that do not appear to be secondary to other aspects of schizophrenia.

But in an address titled “Defeatist Beliefs, Asocial Beliefs, and Low Expectations: The Emerging Cognitive Behavioral Science of Negative Symptoms and the Deficit Syndrome” at the International Congress of Schizophrenia Research (ICOSR), Paul Grant, Ph.D., described preliminary research showing that these chronic patients appear to endorse negative beliefs that may respond to goal-directed cognitive therapy.

This is interesting for two reasons.

One is that if offers hope that some professionals may finally be figuring out how to help people who have these kinds of problems, rather than just theorizing that nothing can be done.

But the second reason it is interesting is that it gives us an opportunity to contemplate for a minute the “negative symptoms” that the mental health system typically manifests in relation to people diagnosed with schizophrenia.

• defeatist beliefs – such as the belief that people with this diagnosis will never recover.
• asocial beliefs – such as the belief that one shouldn’t talk with people with this diagnosis in any detail about their unusual experiences or perspectives.
• anhedonia – such as never taking any joy in the positive aspects of psychotic experience or noticing the creative potential of people who get diagnosed.
• avolition – such as, no motivation to try and understand the person or to provide psychological therapy

I’m not condemning the mental health system for having these “symptoms” but just emphasizing that these are human problems, and we all can fall victim to them, and when we do, it’s great if someone helps us get free of them!

And I do suggest reading the article, free at Form of CBT Can Improve Stubborn Psychosis Symptoms

Tuesday, Oct 4th, 2011, from 12 to 1:30, I will talk about “Dialog at the edge of reason:  addressing spiritual issues within treatment for psychosis.”  1.5 hr. NASW Continuing Education Credits –pending.  Meeting Location:  Lane County Mental Health, Eugene OR.  Michael Rogers room (#198).  Free.

The LCMH building is across the street from Autzen stadium.  Turn on Scout Access Rd when you see the log cabin style building. From the lobby, turn right, or ask reception for room #198

Abstract of the presentation:

Mental health professionals are trained to empathize with clients, and to use the client’s own language and metaphors where possible.  Yet these same professionals most frequently base their explanations on reason and on empirical knowledge of bio-psycho-social factors, while those diagnosed with psychosis  often speak in ways that defy reason and empirical knowledge, and use spiritual concepts or metaphors instead.  Professionals are likely to view such spiritual talk as” hyper-religiosity” or simply as part of the disorder, or at best as something they lack the expertise to discuss.  These differences create a barrier to an effective therapeutic relationship.

There are ways, though, to overcome this divide.  Professionals can learn to humbly recognize the limits of their own reason and knowledge, and the potential validity, in some sense, of even odd spiritual perspectives.  At the same time, they can learn how spiritual language and metaphor can be seen as another way of discussing complex dynamic processes and emergent phenomena related to trauma,  attachment, and identity, so that even atheistic professionals can perceive spiritual discussions as related to the core issues of psychosis.  Then, professionals can gently and non-dogmatically deepen spiritual dialogs by using methods similar to Jung’s “archetypal amplification,” helping clients identify possibly useful alternative spiritual perspectives while also preserving self esteem and positive aspects of otherworldly experiences.

When recovery does occur, people often report that spiritually played a key role.  By becoming willing and skillful participants in discussing spirituality within psychosis, professionals can make recovery from psychosis more likely.

Note that this is a presentation that will also be given at a conference on therapy for psychosis, the details of which are below:

Registration is now open for the International Society for the Psychological Treatment of the Schizophrenias and other Psychosis-US Chapter Twelfth Annual Meeting:

Beyond Pandora’s Box:
Exploring Integrative Approaches to Treating PsychosisOctober 14-16th, 2011

Location:  San Francisco, CA

Keynote Speaker
Richard Bentall, Ph.D. Author of Madness Explained and Doctoring the Mind
“The Psychology of Paranoid Delusions “Honoree
Ann-Louise Silver, M.D. Founding President, ISPS-US.
“Early Onset Psychosis: Do We Want It in the DSM-5?“

More information at http://www.isps-us.org/isps-us_2011mtg_information.html

You can find the program at http://www.isps-us.org/isps-us_2011_program.html