Jul 26, 2012

Stop recovering. Start flourishing.

I propose that we ditch the word “recovery” as a goal for people with mental illness. We can do better. Let’s aim to “flourish” instead.

Recovery was a revolutionary concept when it emerged in the writings of mental illness activists some 30 to 40 years ago. Recovery meant that people could make progress, and get better, and control their own lives. This was a real affront to traditional psychiatric thinking. It challenged the coercive forces of institutional life. Nobody put patients in charge of asylums. Nobody put patients in charge of their care. Nobody gave patients a choice.

Check your history. In the harsh pre-World War II asylum days, one in five hospital residents had tertiary syphilis. This population had terrible, often horrific outcomes. Their illness was connected to shameful sexual behavior. Asylums also cared for people with tuberculosis affecting the brain and people with other dementias. People with schizophrenia and other modern-day “mental illnesses” had comparatively better outcomes, but only if they were supported in their daily institutional lives. When institutions lost resources, coercive practices dominated daily life, and people suffered.

After World War II, medications emerged. Not only penicillin for patients with syphilis (which quickly reduced asylum populations) but true psychiatric drugs like lithium, antidepressants, and antipsychotics.  These were difficult medications that were pretty much improvised. Modern testing protocols were not in widespread use. There were few ethical concerns. This was the 1950s, a time when the first polio vaccine was being field tested in state institutions for crippled children, with zero regard for informed consent.

Still, the new drugs seemed to have positive effects on people. This changed the prevailing notion of the life course of people with mental illness. People could do better, and even survive in the world with some support. And simply walking out of an asylum implied some degree of recovery. It was an achievement.

People who emerged from institutions began hanging out together and reflecting on their experiences. They were confronting a new way of life that was not dominated by institutional confinement or coercion. Groups of former patients coalesced around creating a better life for themselves. One spectacular thing that emerged was that people refused to relate to each other only as broken. They accommodated mood swings and symptoms short of dangerousness.

And as people moved forward, they felt entitled to a different, upgraded identity.

People invent new labels for themselves all the time. When people work together, they use words that incorporate characteristics of shared culture. So, in the 1960s through 1980s, new terms emerged. Psychiatric survivor. Mental health consumer. The authors’ writings exemplify what they had in common, which was their reaction to sickness, difficult symptoms, labeling, conflict with family, the experience of coercion, the desire for self-direction, and the process of getting better. What emerged was the concept we know today as recovery.

But now it is several decades later. Recovery is a mature concept. But I believe recovery is quickly losing its appeal, because there’s just not enough hope and power in it.

For one thing, most people with mental illness no longer share a coercive institutional experience as a frame of reference. Most diagnosed people never get admitted to a psychiatric hospital. We have always been outpatients if we have ever gotten treatment at all. We get pills, like we do for anything else. We might get a stern look from a person in an office building if we quit taking medication, but that is nothing compared to a scary syringe-wielding nurse and a locked door at the end of the hall.

There is still some coercion, of course, especially for people who have symptoms that are difficult to manage or people who have some safety risk. I also hear of case managers who hijack recovery, blaming people for not adhering to their recovery plan. People get scolded for not writing in their journal or the way they are filling out their notebooks. Coercion again. (Criminalization is a topic for another day.)

What I find inadequate about the word recovery is that no matter how I approach it, the word still implies a connection to a stigmatized problem. Recovery drags the medical model behind it, but does not even guarantee symptom relief. Thinking of recovery as mere process implies the medical system is not done with you yet, and keeps the medical issue at the center of your life. At some vague level, I think the term has now become a standard that resonates with clinicians. It promotes system-compatible actions. Perhaps this connection to enforceable standards is what made SAMHSA finally issue an official definition of recovery. Now at least there is something to use to design compliance protocols around.

Do people really want to remain connected to sickness? Should the connection to sickness be the most important thing in a person’s life, the thing that defines a person?

I don’t think so. Speaking as a person who has had a comeback from a tough experience of illness, I’ll do what I need to do to stay healthy, and that may require pursuing a focused process of recovery, taking my medicine, seeing my doctor or whatever. But the pursuit of recovery is not my goal.

Recovery is a means to an end. It is something I have had, a task I have more or less completed.

Don’t get me wrong. I am grateful for my recovery.

But what I really want to do is flourish.

Flourishing means expressing my strengths and capacities, doing well, living a full life, having my family, participating in community life, succeeding in my work. I want to be effective.

Sure, I know I have my limits. I have wobbly moods and my own collection of medical issues. I have my faults and hang-ups. I do take pills as directed, but I am bad at getting exercise. I am comparatively non-productive. I piss people off. I watch too much TV. I am bad at maintaining social connections. I can’t remember my students' names. I’m not disciplined enough. I know I am a sinner. I can’t do everything I want to.

But so what. I am flourishing.

In my crazy,  partially compliant, well-meaning, left-wing, half-assed way, I am working on goals that are not connected to my illness. I have an identity and a future not determined by my diagnosis or whatever might get published in the DSM-5.

The people who designed the term recovery did a wonderful job mapping the way to journey out of madness. Let’s complete that journey. Let’s flourish.

Jul 20, 2012

What it takes to prevent mass killings

Today's Colorado movie-theater violence struck a chord. I have been working on anti-violence for such a long time, and hate seeing these tragedies keep playing out.

I believe we have lost the social capacity to detect and prevent public violence connected to people's deteriorating mental states. I think a big part of this is due to mental illness being so fearful and stigmatizing. We know that suggesting that a person needs help will be taken as a disgraceful accusation. This makes us push thoughts of dangerousness out of our heads. The only antidote is to build up our society's capacity to grapple with dangerousness.

This will not be easy. It's almost like people everywhere unconsciously resist learning what to watch out for. We seldom hear anything about how to interrupt a real threat as it is gathering steam. Even mental health advocates shun the topic of the violence of the mentally ill. They say that the vast majority of people with mental illness are nonviolent and vulnerable, which is true as far as it goes. A few groups do try to scare us with talk about diagnosed dangerous folks running amok, mostly to push their own legislative agenda about forced treatment.

Most of the mass killers I've read about display pieces of one diagnosis or another, but are disconnected from our treatment systems. There is often some dispute about whether the person is mentally ill in a formal sense, or whether or not the system could have helped the person before they acted violently. Still I think many of these mass killings are detectable and preventable, if ordinary people knew just a little bit more about how people break down, and about when to start worrying, and about when to call. We already know who to call.

Countless incidents of violence are interrupted every day in communities throughout the world. They do not make the news because they remain non-events. That's why I believe ordinary non-clinical non-experts are our first line of defense for killings and suicides in our public spaces. Gun control laws cannot help once a person is armed. Forced mental health treatment laws cannot benefit people who are not enrolled in mental health care.

What do people need to learn?

We need to know how to recognize when a threat is building up, and when to call it in. We need to learn a little bit about threat and safety factors. Police already know how to respond appropriately.

And at a more basic level, we really need to know how to talk to our neighbors about how they are doing.

Whenever I hear of a public killing or suicide, I run through this list of threat factors.

-- Was the person communicating effectively before the incident?
-- Was there a statement to be made?
-- Did the person at the center of the incident have major trouble in his life?
-- Was there a triggering event involving shame and embarrassment?
-- Was the person “putting on” a violent identity?
-- Was the person developing tunnel vision?
-- How many mental illness related behaviors were manifesting around the person?

Here’s the checklist of mental illness-related behaviors I am referring to.

-- Hallucinations
-- Delusions
-- Excessive fears or suspiciousness
-- Inability to concentrate
-- Sadness coming out of nowhere, unrelated to events or circumstances
-- Extreme excitement or euphoria
-- Pessimism, perceiving the world as gray and lifeless
-- Expressions of hopelessness
-- Loss of interest in once pleasurable activities
-- Thinking or talking about suicide
-- Sitting and doing nothing
-- Friendlessness
-- Abnormal self-involvement
-- Dropping out of activities
-- Decline in academic or athletic performance
-- Hostility, from one formerly pleasant and friendly
-- Indifference, even in highly important situations
-- Inability to express joy
-- Inappropriate laughter
-- Inability to concentrate or cope with minor problems
-- Irrational statements
-- Peculiar use of words or language structure
-- Involvement in automobile accidents
-- Drug or alcohol abuse
-- Forgetfulness and loss of valuable possessions
-- Attempts to escape through geographic change
-- Frequent moves or hitchhiking trips
-- Bizarre behavior (skipping, staring, strange posturing)
-- Unusual sensitivity to noises, light, clothing
-- Hyperactivity or inactivity (sometimes alternating)
-- Deterioration in hygiene or personal care
-- Unexplained weight gain or loss
-- Sleeping too much or being unable to sleep

But what might we do before an incident?

I actually use this same list when I am talking with a friend or working with someone in the community. I am not a clinician, but I know if I identify enough of these factors, or if I start reacting emotionally or physically to this screening process, I should start thinking seriously about making a call. The police can respond with a friendly check-in visit. This might be enough to keep the person and others in the community safe.

Fortunately, I’ve never been in a spot where I have had to be the person calling something in. I do expect real threats of impending violence to be rare. On the other hand, I try to connect people with treatment all the time. I know what it is like to take a friend to the psychiatric emergency room. And I know many families that must face these hard choices all the time.

At a more basic level, everyone can learn how to have a friendly check-in conversation with a friend or neighbor. It’s important to have a way to be supportive, non-stigmatizing, and focused on safety. Four questions can get this started. These are just topics. Cover them in order, but phrase them any way you like.

1. What have you accomplished since the last time we talked? (This injects a little positivity into the conversation -- at the very least this conversation is happening right now).

2. What are you facing? (We all have something that is challenging to us. The person doing the checking can share first. Remember, there's no reason to make this creepy or intrusive).

3. Who are your allies? (This checks for isolation. People who have real help and good social connections usually have less risk).

4. What is your plan? (This checks for rigid tunnel vision thinking).

I developed this four-question check-in to help people support each other, and promote general safety. People have a built-in capacity to size each other up when they have face-to-face conversations. If a conversation leaves you a little concerned, it's worth checking things out, possibly with a call to a knowledgeable friend or to a clergy member, or mental health professional if you know one.

But if your conversation, or what you observe, leaves you worried sick, make the call.

Jul 17, 2012

We have good reason to fear the asylum

Human beings seldom get captivity right. Guards dominate. Prisoners suffer. We’ve seen it time and again throughout history. It’s part of human nature. A famous 1971 Stanford University psychology experiment grouped students into roles as “prisoners” or “guards” in a mock institution. The “guards” became brutal and abusive. After six days, horrified researchers shut the exercise down.

This sad truth is that it takes a special effort to keep captives safe. We must put our minds to it. So we design our facilities to promote safety. We screen applicants for employment. We restrict staff power. We design grievance procedures, bring in inspectors, and develop quality improvement processes. Ethical leadership pervades safe institutions. Safe institutions let information pass through them to all levels of leadership, as well as to governing bodies like boards of directors, accreditation agencies and regulators – as well as to people on the outside. Openness to families also promotes safety. Anyone who has ever visited a nursing home knows that the residents who are visited by family members get the best care.

We can write all the procedures we want, but if good management does not prevail within the institution, residents inevitably suffer. We can write our core spiritual beliefs and values into mission statements all we want, but for people to be safe, the facility must exemplify these values every day in its ordinary operations. This is an especially tough challenge when residents are dangerous or disagreeable. Imagine what it’s like to work with our toughest mental health populations. Violent, out of control adults. Children who are not safe enough to live in their own homes.

I’ve been reviewing news reports and other material about one situation at a children’s residential treatment facility in northern Kentucky, Campbell Lodge Boys’ Home. The 24-bed treatment center closed in June when Kentucky officials removed all of the state-funded residents. Whistleblowing staff members reported medication abuse and other problems to state officials, prompting an investigation. A school resource officer reported other issues to local police months earlier.

The nonprofit group operating the center is reorganizing, in an effort to prove to authorities that it can fix its operations and reopen. The group looks pretty good on paper. It’s accredited by the Council on Accreditation, has substantial community support and a multi-million dollar endowment, not to mention an organizational history that goes back more than 50 years. It was founded in 1958 as a Catholic orphanage on the Boys’ Town model.

Situations like this make me worry about other facilities in Kentucky. Kentucky does not seem to have much in the way of routine oversight of mental health treatment facilities. Very few incidents must be reported to state regulators – only “serious” occurrences like a resident’s death, a serious injury to the resident, or a resident’s suicide attempt. In Ohio, a facility must report every use of force and any incident or allegation of physical, sexual, or verbal neglect or abuse. 

In my experience, when regulators are not routinely interacting with facilities, people suffer. There’s an illusion of safe operations, nothing more. Management by assigning blame protects no one.


News articles about the Campbell Lodge Boys Home investigation

The Campbell Lodge Boys Home website is http://www.clbh.org/

Jul 14, 2012

In lieu of a memoir, the author reviews his own book

I’m really proud of my book Defying Mental Illness: Finding Recovery with Community Resources and Family Support. It embodies the techniques I used to rebuild my life and career, and is the first book I've seen that really communicates mental illness recovery in an accessible fashion. It allows people to be bad at details and still get to their recovery.

My book is not a memoir. I have read so many memoirs of mental illness. Authors talk about their struggles, or they talk about the lives of extraordinary people they have worked with. It's a little like reading the Lives of the Saints. Extraordinary people – Nobel Prize winners, concert musicians, famous actors, famous college professors. If I am not extraordinary, can recovery be possible for me?

The alternative book that people run into is a reference that focuses on brain science, with an emphasis on medication processes or therapy. We are dragged kicking and screaming through science class. These books are frankly inaccessible to typical readers. They are at the sweet spot for intellectuals.

Occasionally we get books aimed at family members of people overwhelmed by their illnesses. They usually focus on their family story, which is often heartbreaking. The best of these, like Randye Kaye's Ben Behind His Voices, avoid creating us/them situations. The person they write about rarely comes back to a meaningful recovery.

I got to my recovery because I had people to support me when I was suffering the most. My wife and family and doctors and therapists worked together. I had friends who connected me with meaningful work. Recovery involved figuring out what I was dealing with, considering my skills and capacities, and going after it no matter how bad I felt. I went after effectiveness instead of feeling good. I pushed through my wobbly moods. I hung out with do-gooders, and used my skills.

I tried to get a sense of all of those things into the book. And I am still trying to reckon with the reaction to it. My co-author Andrea Schroer was the first person to confront me with the quality of hope that is in the book. It took me quite a while to understand how our book has managed to get recovery right.

So here's why I think Defying Mental Illness works, and is the very first book to really support recovery.

The book mostly ignores the details of mental disorders and goes straight to delivering hope. Lowering the  amount of detail lets the real issues of recovery emerge more clearly. People begin addressing the real issues, which involve their talents and skills, their allies and the people they love -- instead of staying stuck in their symptoms.

Frankly speaking, mental illness is not that complicated. Mental illness is essentially about dealing with noise and distortion in thinking and feeling. Sometimes it's too much, and "we can't hear ourselves think," or we get overcome by emotion or anxiety. There is a relatively small catalog of things that people experience when they have one of these disorders. You can immerse yourself in additional details if you need that. You can also try to get a sense of the "meaning" of the things that you are going through.

But recovery is not in the details of where you are stuck. Recovery is in the path out.

Defying Mental Illness talks about recovery from mental illness as a struggle to regain capacity. It provides a very light explanation of symptoms and illness. It helps people plan their way out of their illness, starting with four questions. What helps you make the most of your talents? What helps you reduce the areas where you are vulnerable? What helps you improve your ability to cope with stress? How can you deal with the risk of something going wrong?

These are devastating illnesses, but we need to get better at saying that people recover.

Most people do recover. They do not need to be heroes to get there.

You do not need to be a hero to get to your recovery either.

Jul 7, 2012

You want some shame with that?

When we are serious about our work with mental illness stigma and other tough social issues, we must eventually confront the topic of shame. This happens no matter how hard we’ve been steering away from it. Shame is the emotion that’s left over, the disgusting ingredient on the waiting room cooking show menu.

People who design anti-stigma programs know that shame is not popular. We present graduate-level neuroscience seminars that never include a single mention of shame. We sometimes use stigma as a euphemism or code word to hide our discomfort with shame. This blockade on shame talk goes beyond our general reluctance to talk about our feelings (especially for men), but it’s certainly connected. Nobody recommends using “what are you ashamed of?” as a pick-up line.

Fortunately we have the work of Dr. BrenĂ© Brown to offer some clues about the shame component of mental illness and tough social problems. Brown uses a strict analytical process to talk about hard feelings, particularly shame. She does “qualitative” research – a process that involves collecting stories and looking for patterns. It lets her access a great deal of data based on people’s real experience in the world – instead of merely tracking what happens in artificial, closed box situations. 

Brown’s work can help us distinguish between cognitive concepts and emotional experiences.  For example, self-esteem is a thought about ourselves, a cognitive concept, while shame is an emotion, something we feel. Knowing how to work within this double dynamic becomes a kind of literacy.  

Brown’s key finding is that people experience shame as they encounter a “web of layered, conflicting and competing social-community expectations that dictate who we should be, what we should be, and how we should be.” 

In other words, people get smacked with thoughts and emotions and cultural expectations all bundled together. Our emotions affect our thinking as we experience them in our gut. Our actions in response to shaming circumstances emerge from emotionally-charged thought processes combined with our mental models and with what our culture expects us to be. 

Dealing with feelings of fear, blame and disconnection is difficult for everyone. You can imagine how tough this is for people with depression or another difficult illness, or for people who must depend on others for housing or material support. 

Shame may be unwanted and disrespected as an emotion, but it’s a common element in human experience. We can’t deny shame’s existence. But shame is an emotion with no constructive value. There is nothing good about it – and no “healthy” shame. Brown spent seven years testing the proposition that shame might be used to change people. She writes
It didn’t take very long for me to reach the conclusion that there is nothing positive about shame. In any form, in any context and through any delivery system, shame is destructive. The idea that there are two types, healthy shame and toxic shame, did not bear out in any of my research.
The most effective response to shame is what Brown calls “shame resilience” – access to a process steeped in connection and empathy. The toxic opposites can involve “numbing out” – alcohol and drugs, isolation and despair. We perpetuate our own shame when we individualize (“I am the only one”) or pathologize (“something is wrong with me”) or reinforce (“I should be ashamed”). We perpetuate shame when we insulate ourselves (separating "us" and "them") or give ourselves permission to stereotype people.

Brown’s research identified four key components of shame resiliency: 
  • The ability to recognize and understand shame triggers
  • High levels of critical awareness
  • The willingness to reach out to others
  • The ability to speak shame.
Since shame comes bundled with our toughest social problems, and is always destructive, we should support shame resilience in the programs we design. 
  • We can model shame resilience, designing messages that show people making connections and talking through problems.
  • We can emphasize commonality, not pathology, by showing how the experiences that make us feel the most alone are actually universal experiences.
  • We can scour our programming of common shame triggers. We might start by putting ordinary people, not professionals, at the center of our programs. Many people in Brown’s research associated shame with education and helping professionals. According to Brown, the mere presence of a person with credentials in a room can have a shaming effect.
The easiest way to learn more about BrenĂ© Brown’s work is to watch her two TED talks, or visit her website http://www.brenebrown.com/ The quotes in this blog post are from her 2007 book, I thought it was just me (but it isn’t): telling the truth about perfectionism, inadequacy and power.

Jul 6, 2012

Finding Out How Everybody Succeeds

I am setting up a free conference so people receiving services and family members can learn from each other about what brings them success.

You can sign up at http://empowerment0918.eventbrite.com.

We give so much power to credentialed experts we forget that we have our own role to play in our success. We get stuck in service systems, even when our paid helpers want us to succeed in the larger world.

It’s time to try something different, to find a way for people to help each other using their own strengths, and the knowledge of what works for them.

What can people create together that connects with opportunities in the world?

Empowerment Conference September 18, 2012 Cincinnati, Ohio

“Sharing What Works – Connecting with Opportunities in the World.”

A free conference for people overcoming challenges in their lives. Finding employment. Overcoming disability or health problems. Returning to the workforce. Finding good housing. Achieving recovery. Creating success in school. Helping care for others.

We are inviting people who use any sort of "service system" (and their allies) to come together and have a conversation.

-- What helps us make the most of our talents?
-- How can we reduce the areas where we are vulnerable?
-- How can we improve our ability to cope with stress?
-- How can we deal with the risk of something going wrong?

Two sessions: 12 noon to 2 PM, repeated from 6 PM to 8 PM.
HOPE4CHANGE Arena, 4100 Reading Road, Cincinnati OH 45229.

Sponsored by HOPE4CHANGE and Human Intervention. Keynote speaker is Paul Komarek, author of Defying Mental Illness: Finding Recovery with Community Resources and Family Support.

Professional development opportunity 3 PM to 5 PM

“Fostering solutions outside of systems we control.”

What might happen if we left our credentials at the door? Professional caregivers, treatment teams and public servants want people to succeed in the larger world, but all systems have their limits.

At their best, system boundaries keep clients safe. But sometimes they just ration out resources. And at their worst, systems trap and disempower the very people they are meant to benefit.

Paul Komarek, author of Defying Mental Illness: Finding Recovery with Community Resources and Family Support will lead a conversation about solutions within the expertise of ordinary citizens.

What can we create in the larger world to help people achieve success in their lives?

Reserve your seats online http://empowerment0918.eventbrite.com.