Introduction

In 1991, when Bill Anthony, Ph.D., a well-known leader in psychiatric rehabilitation from Boston University, came to visit the Village, I asked him what he thought the next big movement in mental health was going to be.  He answered “recovery,” and I nearly fell off my chair.  At the time, we were only one year into building the Village.  I had just begun thinking about recovery and it still seemed too extreme to ever become acceptable.

Since then I have heard a number of profound voices promoting a recovery vision, including leading consumer advocates like Dan Fisher, M.D.; Patricia Deegan, Ph.D.; Ed Knight; Bill Compton; and Jay Mahler.  Recovery seems to be an idea whose time has come.  My own voice owes whatever power and credibility it has to my experiences as a founding staff member and medical director of the Village over the last decade.

The Village Integrated Service Agency, a program of the Mental Health Association in Los Angeles County, is located in Long Beach, California, and has steadily evolved into a recovery community since it was funded by the California Legislature in 1989.  The Village is not a place to live.  It is a case management and rehabilitation system of care that supports community integration and recovery for its “members” (members are the people we serve; we don’t use the terms “patient” or “client”).

The Village staff work with people with severe mental problems.  Many of them have schizophrenia or other psychotic disorders.  Many are victims of destructive child abuse.  Many have severe substance abuse problems.  Many have been homeless, jailed or hospitalized repeatedly.  In the past, they would have spent their lives locked up in institutions, feared and shunned by their community.  Today, with good treatment and support, they are returning to school, finding jobs and living in their own apartments.

To become a recovery community, the Village had to change its focus of care from its patients’ symptoms to its members’ lives.  Changing this focus changed everything.  All of us at the Village had to break out of the walls of the medical model to work with people’s lives instead of just their illnesses.  We had to break out of the walls of professional distance to create long-term, caring and emotional relationships.  We even had to break out of the walls of our building to work in the community at large.  And, ultimately, we had to break out of the walls of our internal stigma and prejudices.

When I considered writing about the Village, Ann Stone, a colleague at the Mental Health Association and editor of this booklet, urged me to write the story of my own transformation, a kind of “The Education of Mark Ragins, M.D.”  She pointed out that I was trained in a highly medical model atmosphere at Washington University in St. Louis and the traditional clinical model at the University of Southern California.  As a psychiatrist, I had been taught to manage serious mental illnesses with a set of assumptions that if articulated would sound something like this: “People with chronic mental illness are permanently disabled.  Medicate them and forget them.  They are weak and need to be taken care of.  They can’t hold down jobs.  They have no significant role to play in society.  The possibility of them having a meaningful life is slight.  Their prognosis is essentially hopeless.”

Before coming to the Village, I had no previous exposure to rehabilitation or recovery.  All I really knew was that I wanted to do things differently.  And yet, I have grown into a successful recovery-based psychiatrist and believe other mental health professionals, including psychiatrists, can make similar transformations if they are given the chance.  I hope that my experience will be helpful to them.

When I came to the Village, I brought a scraggily, dying ficus tree with me.  It had been given to me a year earlier by a close friend named Robbyn Panitch who was a homeless outreach worker at Coastal Community Mental Health Clinic where I worked until it shut down because of budget cuts.  Two months after Robbyn started working at a clinic in Santa Monica, she was stabbed to death by an unmedicated homeless man with schizophrenia she had been trying to help.  In my sorrow, the tree took on extra meaning. 

At the Village, both the tree and I were nurtured and thrived.  Over the years, I lost track of exactly which tree it was and sometimes I walk around the Village trying to recognize it among all the other plants.  I spent my entire 30s at the Village, and sometimes I can’t tell where I’ve helped the Village grow and where it has helped me grow.  There certainly has been a recovery and growth of Mark Ragins.

When visitors come to the Village for our three-day immersion trainings, they notice that although I have a loud and distinctive voice, the Village is made up of many voices.  The entire program feels different – more full of life, hope, energy and recovery – than many other programs.  There is a core of staff that has been at the Village since the beginning.  Some remarkable people have left along the way and some amazing new ones have joined us.  Visitors often wonder whether the Village can be replicated without this special ensemble of staff.  Frankly, I don’t know.  I believe that creating a recovery community brings out the best in staff as well as members. I believe that hope is addicting, and those who experience the Village will want to transform their mental health programs into recovery communities.

My first presentation on recovery was to a group of social work field supervisors at California State University, Long Beach, in 1994.  As I spoke, the room literally transformed before my eyes.  Even the two social workers that I worked with regularly were moved to tears.  I realized that I was opening a door to a vision of hope and recovery that is bigger than I am.  Since then, I have made such presentations to many groups.  Sometimes only a few people in the room seem moved by my words; other days my message about recovery affects everyone in the room, just as it did that first day.

In this booklet, I invoke two historical voices:  Elizabeth Kubler-Ross and Helen Keller.  I consciously based my descriptions of recovery as a psychological process with flexible stages on Kubler-Ross’s stages of grief.  Her work transformed medical treatment and inspired the hospice system of care, substantially changing societal attitudes about death and dying.

Along with Dr. Kubler-Ross, I cannot think of a better inspiration than Helen Keller.  She taught us that people with severely disabling, incurable medical conditions could make a meaningful contribution to the world.  Refusing to be isolated from the rest of the world and not being satisfied with just being well cared for, Helen Keller embodied the essence of recovery.  She wanted to be a part of the world and to live a full life.  Her teacher, Annie Sullivan, certainly was an excellent role model for all professionals assisting disabled people to strive toward recovery.

I’d like to close this introduction with a story about my family.  I recently went to my son Matthew’s middle school Back-to-School Night.  Together we went to all of his classes to meet his teachers.  When we got to his health class, I checked out the chapter on mental health in a new textbook.  It said that there were two types of mental illnesses, physically caused and emotionally caused, and that schizophrenia was an emotionally caused illness.  It said that schizophrenia means split-brain, but made no mention of medications or any treatments.  It concluded in big italic letters that psychosis is “a condition in which a person is not able to function in the real world.”  Matthew and I read this statement together, and he looked puzzled.  “That doesn’t seem to be true of the people I’ve met at the Village,” he said.

It certainly doesn’t seem true to me either. So, ultimately, I decided not to follow Ann’s advice to tell my personal story.  Instead, in this booklet I chose to tell the stories of the people who have inspired and instructed me.  Hopefully, these stories can help all of us build a theoretical framework of recovery and even a set of practical recovery-based principles.

I hope that in reading “A Road to Recovery” mental health professionals will find a road map for how they can help the people they serve recover from their illnesses.  Personally, I have.

When people first become Village members, they are often confused by the Village’s lack of requirements and set programming.  I explain that the Village is a member-driven program.  The services the Village provides depend on the goals each member wants to pursue.  Since everyone’s life is different, everyone’s goals and needs are different. Services need to be different and changing, too.  The Village doesn’t base its program on its members’ illnesses or diagnoses, but rather on what the members want for their lives.

If new members are still confused, I tell them this story.  A college back east was undergoing an expansion.  An architect was hired to design and construct a new set of buildings and grounds.  The following year, at the opening of the new campus, the university president and the architect stood together admiring it.  Somewhat bewildered, the university president turned to the architect and said, “It all came out very nicely, but you forgot the sidewalks.”  The architect replied, “I didn’t forget them.  I’m waiting to see where people want to walk before I build the sidewalks.”  The Village has helped its members build sidewalks to all sorts of great places, but it’s the Village members who decide were they go.

Over the years I have walked many paths with our members.  Some of them stay in one spot, going over and over the same ground, pounding it into barrenness.  Some of them take the all too familiar and disastrous path of substance abuse.  And, some of them begin to walk, usually hesitantly at first, but after fits and starts, with increasing confidence on paths that improve their lives.

As I’ve shared more and more of these paths, they’ve begun to coalesce gradually and become heavily worn in places, until now it’s beginning to look like an actual road to me: a road to recovery.

As a psychiatrist, I naturally assumed that recovery was unrealistic because the illnesses we deal with are long lasting and difficult to treat.  When I saw Christopher Reeve in his wheelchair at the Academy Awards in 1996, I realized I was confusing recovery and cure. Even though his spine was still broken, even though he couldn’t walk or breathe unassisted, the light in his eyes was back.  He seemed proud and self-confident.  Since then, he has gone on to act, write and direct. I’m sure he misses terribly all the physical activities he did before his spinal injury, but in some fundamental way he has recovered.

People do recover.  People do recover even when there is no cure for their illness. For example, people recover from strokes even though their nerve cells are still dead or recover from heart attacks even though the heart muscle never re-grows.  In fact, it is perfectly possible to recover without having an illness at all.  People recover from a divorce, a parent’s death, being raped and all kinds of terrible tragedies.  Most of us have recovered from something at sometime during our lives.  As mental health professionals, we are so busy treating illnesses that we get tunnel vision and forget to focus on helping people with their recoveries.

Sometimes the recovery process and its stages are easier to conceptualize when applied to a common personal tragedy like divorce rather than to a mental illness.  Most of us have known people who have gone through a divorce and have tried to help them recover from the feelings of loss and hopeless they often experience.  If I were trying to help a friend recover from a divorce, here’s what I might do.

First, I’d try to help him see hope for the future.  I’d say, “You’ll get over this.  You’ll find someone else.”  Perhaps, I’d give him a successful role model for his recovery by reminding him about a mutual friend who had survived a similar experience.  “Remember Steve; he thought he’d never get over his divorce from Lisa but look at him now.  He’s doing great.”

Second, I’d try to empower him by building him up.  “You’re a great guy.  You’ve got a lot going for you.  Plenty of women will be interested in you.”  I might give him extra support and attention until he gets his confidence back.  “Come on, you can hang out with me for awhile.”  I might even try to fix him up with someone new or accompany him to a social activity where he could meet new people.

Third, I’d try to get him to take more responsibility for himself and not rely on me to take care of him.  “Hey man, you’ve got to start going out on your own again.  You’ve got to take a chance and introduce yourself to new women.  You can do it.”  I might suggest changes he could make to improve his life.  “Maybe you should sign up to be your daughter’s soccer coach” or “Maybe it’s time to do something about your drinking.  It’s still messing things up for you.”  By taking more responsibility for himself, he might actually be better off after his recovery than he was before his divorce.

Fourth, I’d help him find new roles for himself other than the role of a “recovering divorcee.”  When we played tennis or worked on a project together, I would encourage him to talk about things other than his divorce.  I’d shift my support so that I was concentrating on his new roles not his old one.  And, if my friend successfully lived through all of these stages, he would have recovered from his divorce even though his marriage was never restored. 

Recovery is a normal adaptive process following tragedy just as grief is a normal adaptive process following loss.  In fact, many people in recovery describe going through the stages of grief (denial, anger, bargaining, depression and acceptance) as part of their recovery process.  Often the two processes supplement each other.

The Four Stages of Recovery

Recovery has four stages:  (1) hope, (2) empowerment, (3) self-responsibility and (4) a meaningful role in life. 

Hope

During times of despair, everyone needs a sense of hope, a sense that things can and will get better.  Without hope, there is nothing to look forward to and no real possibility for positive action.  Hope is a great motivator, but for hope to be truly motivating, it has to be more than just an ideal.  It has to take form as an actual, reasonable vision of what things could look like if they were to improve.  It’s not so much that people with mental illness will attain precisely the vision they create, but that they need to have a clear image of the possibilities before they can make difficult changes and take positive steps.

Empowerment

To move forward, people need to have a sense of their own capability and their own power.  Their hope needs to be focused on things they can do for themselves rather than on new cures or fixes that someone else will discover or give them.  To be empowered, they need access to information and the opportunity to make their own choices.  They may need encouragement to start focusing on their strengths instead of their losses.  Sometimes they need another person to believe in them before they’re confident enough to believe in themselves.

“Readiness” often occurs only in retrospect after they have done something successfully, so waiting until a person with mental illness is ready to move on can often be stagnating and disempowering.  Often people have to experience success before they believe they can be successful.

Self-Responsibility

As people with mental illness move toward recovery, they realize they have to take responsibility for their own lives.  This means they have to take risks, try new things and learn from their mistakes and failures.  It also means they need to let go of the feelings of blame, anger and disappointment associated with their illness.  This is a particularly difficult stage for people with mental illness and their caregivers.  Old patterns of dependency must be broken, and mental health professionals need to encourage clients to take charge instead of settling for the ease and safety of being taken care of.

A Meaningful Role in Life

Ultimately, in order to recover, people with mental illness must achieve some meaningful role in their lives that is separate from their illness.  Being a victim is not a recovered role, and frankly, neither is being a survivor.  Newly acquired traits like increased hopefulness, confidence and self-responsibility need to be applied to “normal” roles such as employee, son, mother and neighbor.  It is important for people to join the larger community and interact with people who are unrelated to their mental illness.  Meaningful roles end isolation and help people with mental illness recover and “get a life.”

This series of stages can provide a roadmap, albeit a fluid one, of the process of recovery that can be applied, specifically, to helping people recover from having a serious mental illness.  For me, it has been a much better roadmap than the medical model’s version.  Although the medical model relies on objective, measurable signs and symptoms and scientifically defined illnesses, psychiatric histories rarely feel “real.”  On the other hand, subjective, experiential stories of recovery almost always do.  I have heard many moving accounts by people with serious mental illness who have described to me what it is like to travel on a road to recovery. 

This booklet is about the ways mental health workers can help people with mental illness build their roads to travel on.

Last year, Marty, a 40-year-old Village member with schizophrenia, was dragged in to see me by his father who was also his conservator.  Marty had spent much of his life locked up.  He put on his “best face” to see the doctor, even though things were going poorly for him at home.  He began with, “Everything is fine.  The medication is working very well.  You can just give me refills and save your time.  I’ll be fine.”  I talked with him leisurely, trying to get to know him better as I would a new friend.  I introduced him to other staff and members and offered to share my popcorn.

As he watched and listened to me, he grew more and more confused and anxious.  He didn’t understand why I neither moved to hospitalize him nor wrote him a prescription.  Finally, he blurted out, “What do you want from me?  Just tell me what you want and I’ll do it.”  I thought for a moment and then said, “I want you to hope.  I want you to hope that there can be more to life than staying out of the hospital.  I want you to hope that you can use medication to relieve some of your suffering.  I want you to hope that your self hasn’t been swallowed up by your illness and you can recover the things that make you special.”

My words were something he couldn’t fight against.  There was no threat or power struggle.  The next time he came back he said, “I’ve thought about what you said, and I want to go back to college.”  Since then, he’s started using his medication more regularly, going out socially, working on his fears and moved into his own apartment.  It has been a slow process, with many ups and downs, but his recovery has begun.  It began with hope.

Questioning traditional views

Some of my colleagues may say I’m being a charlatan, giving unrealistic hope to people with schizophrenia.  But, here’s my justification.  Over many years, there have been numerous studies, with varying results, on the “natural course” of schizophrenia.  In America during the 1840s, there was a widespread belief that God would heal people and apparently three-fourths of the people with schizophrenia in moral treatment hospitals recovered and went back to their lives in less than one year.  In Germany during the 1890s, Kraeplin observed that the lives of people in his neurology hospital took a uniform deteriorating downhill course with no hope of recovery.

Recent longitudinal studies in Maine and Vermont by Courtenay Harding, Ph.D., showed that at least half of the people released from back wards of state hospitals during the 1960s recovered and became functional again once they were back in their communities.  In our present era, most people with schizophrenia are stabilized on medication and receive Social Security disability benefits.  Less than 3 percent ever get off benefits and become self-supporting.  It appears that the course of schizophrenia can be dramatically altered by how we respond to the illness.

Unfortunately our didactic training and our professional experience tend to reinforce negative, hopeless stereotypes.  Professionals are taught Kraeplin’s observations that schizophrenia is a chronic deteriorating illness even though there has been a century of studies in a variety of countries and settings that contradict Kraeplin.  The longitudinal outcome studies, like Harding’s, are simply not taught or widely accepted by professionals.  Courtenay thinks professionals don’t believe the data because it contradicts their daily experiences.  Professionals often don’t have contact with their clients after they have recovered.

I met a woman in Florida who took me out scuba diving.  Afterwards, as we were washing off the equipment, I confided in her that I was a psychiatrist.  She confided in me that after breaking up with a boyfriend she’d become paranoid and heard voices for about a year.  She had been diagnosed with schizophrenia, hospitalized several times and treated with Mellaril, an antipsychotic medication, for several years.  She had ultimately recovered completely and hadn’t had any problems in the last 10 years.  She certainly didn’t fit my, or any other professional’s, image of a person with schizophrenia.  She never returned to see any mental health professionals after she recovered.  As a result, no professionals ever saw her recovery.

Re-examining “successful” treatment

Both professional training and public education campaigns designed to reduce the stigma associated with mental illnesses carefully teach that schizophrenia is a genetically based, chemical brain disease that isn’t anyone’s fault.  Unfortunately, this message gets translated to mean that every one is helpless when it comes to treating or overcoming mental illness.

When I was a psychiatric resident at the University of Southern California, I worked with a young Japanese-American man with paranoid schizophrenia.  He wouldn’t accept that he had this disabling, permanent condition.  He wouldn’t take pills except when he felt nervous or couldn’t sleep.  He wouldn’t apply for Social Security disability payments and kept trying to use his accounting and computer skills to go back to work.  Invariably, he would get paranoid, accuse his co-workers of spying, destroy his work, and lose his job. He was an ongoing burden to his family with whom he lived, and they felt helpless and overwhelmed.

I worked very hard to establish a trusting relationship with him over the year I worked with him.  I helped him to understand his illness as a biological condition and accept its limitations with less shame and blaming.  It wasn’t his fault; it wasn’t anyone’s fault.  He began taking medications regularly and stabilized his symptoms.  He applied for and received disability benefits and stopped trying to work.  His family was very grateful.

Unfortunately, it seemed like most of the life had been taken out of him; he became passive and slowed.  The days all passed uneventfully for him.  I was left with a heavy feeling in my heart and wondered to myself if I’d actually helped him with my “successful” treatment.  I had no exposure to rehabilitation or recovery and, at the time, I couldn’t even visualize any other treatment outcome.  My supervisor reassured me I’d done a good job.  He told me that if I wanted to help my patient deal with his demoralizing inactivity I could couch it as early retirement or remind him he needed to avoid stress because of his illness.

Believing in the possible

The Social Security Administration once returned an SSI application I had filled out because I had written the word “hopeful” under prognosis.  They said if the applicant’s doctor had a hopeful prognosis then maybe he wasn’t really permanently disabled.  In an ironic way, they were right.  One of the best ways to ensure permanent disability is to have a hopeless doctor.  I’ve met many “disabled” people who wouldn’t try anything new, including work, because their doctor said they couldn’t do it.  I’ve seen many people accomplish things that I thought, with all my professional experience and training, were impossible.  I have entirely stopped telling people they won’t be able to do something. 

During my early days at the Village, Dan, a member who had lived in a board and care home for 15 years, said he wanted to move into his own apartment.  As a well-trained psychiatrist, I knew his move was impossible. He’d had paranoid schizophrenia for 20 years and regularly complained about the people in the alley watching him and getting ready to attack him.  At the time, I knew he was too ill to live independently.

Dan’s caseworker was Clara, a feisty 60-year-old Puerto Rican woman who had run a bar when she was 19 and worn out three husbands.  We hired Clara without any college degree because she'd done a good job raising a developmentally disabled daughter and was an outspoken church organizer.  She also livened up our dances.

Without the benefit of higher education, Clara didn’t know that Dan’s moving into his own apartment was impossible.  She began helping him find an apartment.  Dan’s sister called to complain, saying that her brother had paranoid schizophrenia and, if he moved into his own apartment, he would relapse and get re-hospitalized.  It had been tried 15 years ago.  Dan’s sister felt that he needed to stay in a board and care so that someone would take care of him.  Clara said she understood her concerns but that she worked for Dan and not for her.  If Dan wanted to get an apartment, she was going to help him get one.  I certainly wasn’t going to tell Clara not to help him after that.

Clara did everything she could to help Dan succeed in an apartment.  They walked the streets together looking at rentals.  She helped him fill out applications, move, manage his money, do laundry and go shopping.  She even helped him plan a housewarming party.  All of this help was given as training so Dan gradually took over doing more and more by himself.

Unfortunately, several months after Dan moved, he called in a panic saying that poison gas was being pumped into his apartment and he had to get out of there.  With the benefit of my education and training, I knew this was the relapse and likely hospitalization I’d been expecting.  Without the benefit of my education and training, Clara went to his apartment to find out what was going on. She found a leak in his gas pipes.  Poison gas was indeed being pumped into his apartment.  She put Dan in a hotel for two days and hassled the landlord to fix the pipes.  Eight years later, Dan was still living in his own apartment and doing everything for himself – even though I knew it was absolutely impossible.  (Thanks for the memories, Clara.)

At the Village, I see things happening all around me that previously I would have thought impossible.  I see recovery happening.  It seems that people with serious mental illness can recover in ways I never dreamed of, especially if they can build their sidewalks with a combination of new, better medications and a good recovery-based program.  I think it is rational to be hopeful.  In fact, it seems much more rational to me to see the potential for recovery in each new person rather than assigning them a life of disability payments, unemployment, dependency, social isolation and segregation.

Mental health professionals uniformly regard people with severe mental illnesses as hopeless.  This is because we spend virtually all of our time working with people when they are at their worst.  Tim, a nurse we recruited from a psychiatric hospital, came to the Village for a job interview.  One man Tim had known as a raving psychotic in the hospital waved hello at him.  He was amazed to see people whom he had seen as severely ill in the hospital leading normal lives outside of it.  Tim said he simply didn’t know that was possible.  That was the moment he got hope and decided to work with us.  Hopeful staff create hopeful members.

Seeing a positive image of the future

One of our Village members, Ellen, has obsessive-compulsive disorder and psychosis.  (By the way, neither Ellen nor I could fit her into a clear diagnosis even after Ellen compulsively read and reread the DSM IV.)  Ellen taught me that there is a difference between hope and a positive image of the future.  On one hand, she has hope that she can recover so she keeps coming to me and searching out new approaches and medications.  On the other hand, she has no image of what she would be like if she recovered.  Consequently, Ellen doesn’t actually follow any of my advice or make any of the changes, usually involving facing her anxieties, because she doesn’t see how it could possibly help her.

Most of us need an image of our goal before we are ready to undertake anything difficult to reach it.  I know I would never have stayed in medical school if I hadn’t had an image of myself as a doctor.  My present life is nothing like I imagined it would be, but once I started on the path to medicine, choices kept appearing.  Most of the time, goal imaging must precede goal planning.

Our team took Pam, another Village member, out to a celebratory lunch.  Pam, who has an undiagnosable psychiatric disorder, had returned to college and we were celebrating the “A” she got on her first test.  At the lunch, Pam said she wanted to thank me.  I asked Pam what I had done.  It seemed to me that she’d done all the hard work.  She said that every time she came to see me and started complaining about her boyfriend, her agitation, her medication or me, I talked about how I could see her as a student at Long Beach City College.  I’d remind her that registration was coming up or offer to call a friend of mine in the disabled students office for her.  After a while, it seemed like a real possibility.  She started to see herself as a student, too.  Pam said that once she could see it, she could go out and do it.

Charlie is another example of how visualizing a different future can be motivating.  At 24 years old, he had been receiving Social Security benefits since his first manic-depressive psychosis at age 19.  He told me about his latest episode of depression and how he had been stuck in bed, and as a result, had missed yet another job interview.  I responded by saying that I knew he was frightened about losing his disability benefits or about getting psychotic again, but that actually his symptoms were greatly improved.

I said that he could stay on SSI benefits indefinitely, but asked if that was really how he visualized his future.  What would it be like to be 44 and still on disability?  What else could his life become?  Later that week, Charlie called his case manager and told her about his conversation with me.  Charlie said he had thought a lot about what I’d said and decided he didn’t want to be disabled forever.  He could do more.

Charlie asked his case manager to set up another job interview.  He went to the interview, followed up aggressively and got the job.  When he told his mother about getting the job, Charlie was surprised that she wasn’t as frightened about his getting off SSI or getting sick again as he thought she would be.  She was very supportive.  For a long time, I had been urging Charlie to see if taking less medication made him less sleepy.  After getting the job, Charlie agreed to try a lower dose.

Nothing makes me feel quite as good about being a psychiatrist as actually reawakening hope in someone.

Getting emotionally inside

When I was a resident, I developed a growing sense of confidence by handling a large set of difficult “cases.”  I collected an amazing array of “war stories” and could out-duel most of my fellow residents with enthusiastic tales of the unusual, the bizarre and the complex.  What I failed to experience were the people who made up these “cases.”  I hadn’t given any thought to what it must be like to have these conditions.  What I failed to experience was compassion and empathy.

Before we, as mental health professionals, can help people form visions for their future, we need to know them as people and not just as diagnoses.  Our objective assessment of the signs and symptoms of their illness will not help them imagine recovery in their future.  As John Strauss at Yale urges, we need to do a subjective assessment, which is similar to the assessment an actor does when he tries to get into a role and understand the character’s inspirations and motivations. In order to do this type of assessment, the professional needs to get emotionally inside the skin of someone with a serious mental illness, and that type of empathetic connection frightens many of us.

Bill, a man in his early 30s who has schizophrenia, came into my office late one afternoon.  He held up his hand with his palm facing me and asked, “What do you see?”  I was tired and answered unenthusiastically, “Your hand.”  This didn’t satisfy Bill.  He said, “No, no.  Be more specific.  What do you see?”  I said, “Okay, I see the swirls of your fingerprints, the creases where your fingers bend, and those lines that are your love line and life line.”  Pointing from his eyes to the back of his hand, he said, “When you can see nails and knuckles and hair, then you’ll be able to help me because you’ll be seeing the world from my side instead of yours.”

As a mental health professional, I feel it is our obligation to understand our members’ worlds so that we can figure out how to be helpful to them.  It isn’t their obligation to understand our world with its DSM IV and its rules in order to receive help from us.

When I ask Village members what the staff did that was the most helpful, they never say, “It was that clever combination of Resperidone, Depakote and Serzone you prescribed.”  They always recall some moment of human kindness or a time when we believed in them.  They recall the moment when our walls were down or when we were genuinely happy for them or even when we cried.  We helped them when we were real.  That’s when they could tell we had hope.

Empowerment is a popular term in mental health with most programs claiming to “empower” their clients.  But mental health programs seem to have many differing definitions of empowerment and practices designed to promote it.  Judi Chamberlin, advocate and author with the National Empowerment Center, identifies the key elements of empowerment as including access to information, ability to make choices, assertiveness and self-esteem.  Using this definition, I feel that we, as professionals, do some things that help promote empowerment for the people we serve and other things that have the opposite effect and need to be changed. 

As a psychiatrist, I found that changing my focus from treating illnesses to helping people has been the most important step I’ve made toward promoting empowerment.  At first glance, this change may seem semantic or “politically correct,” but in practice there is a big difference.  Here are two extreme examples that illustrate this difference. 

Shock therapy can be a very effective treatment for the illness of psychotic depression.  With only modest side effects, it can dramatically improve a mute, starving, catatonic, suicidal person within a couple of weeks.  Shock therapy is, on the other hand, usually a very bad experience for the person who receives it.  Patients often feel traumatized, stigmatized, out of control and frightened by the memory loss associated with shock therapy.  Some suffer ongoing nightmares and blame the shock therapy for everything bad that happens to them afterwards.  They are often more frightened of needing more shock therapy than of the depression returning.

On the other hand, when a street outreach worker connects with a homeless person who has schizophrenia by talking to him regularly or bringing him a lunch and a blanket, it can be a very good experience for the person.  This type of street outreach can help people begin the long, slow road back to belonging to society.  It can help them build enough trust to accept other types of assistance like medication, housing, substance abuse treatment and employment services.  However, giving someone a sandwich twice a week is a very bad biological treatment for a neurochemical illness like schizophrenia.

Seeing the person not the case

Helping people doesn’t mean ignoring their illnesses.  It means treating their illnesses as part of their entire life.  “Seeing the person not the case” is essential to empowerment. 

When I have an appointment with another doctor and I tell her I’m a doctor, I am treated as a colleague, not a patient.  Even if the doctor has never met me before, she often won’t charge me.  Her staff makes sure I’m comfortable while I’m waiting and helps me fill out the forms.  The doctor often asks me about my practice and is friendly.  We work on my history and diagnosis together.  The doctor will go over lab tests and x-rays with me – even though I couldn’t read an x-ray to save my life.  She will often tell me the advantages and disadvantages as well as her opinion of each treatment option, and then give me a choice of what treatment I want. 

If I went to the same doctor and didn’t tell her that I am a doctor, I would be treated much differently.  Now I’m a patient.  I have to fill out forms on my own.  I am left alone to wait for my few minutes with the doctor.  Now I’m an unreliable historian and my sense of humor is a distraction rather than an enjoyable quality. 

The doctor recites a memorized description of my condition, prescribes a treatment without including me in the process and then urges me to comply with her orders.  In both examples my illness is treated.  In the first, I am a person; in the second, a patient.  In one, I am empowered; in the other, I’m not.  To be empowering as a psychiatrist I needed to stop turning people into patients.

Re-evaluating the role of the doctor

Several years ago, I was on a panel at a conference presenting on medications.  I had never met the man and woman I was with on the podium.  Both of them had chronic schizophrenia and their role on the panel was to talk about their experiences with medication.  My first impression was that both seemed rather slow and dull with very little to say.  They were satisfied seeing their psychiatrists for fifteen minutes once a month.

The presentation was dying, so I asked them about the rest of their lives, aside from medications.  As it turned out, the woman was in a bowling league, baked cookies for her Sunday school class and knew a great deal about the bus system in Hollywood.  The man used to volunteer in the basement of the Hall of Records where the archival photographs of Los Angeles are kept.  They both literally came to life as they talked about their interests. 

Once they got started, they talked and talked, animated and engaging.  Finally I interrupted them to ask why they said that they had nothing to say to their psychiatrists when they had so much to say to me.  They replied that their psychiatrists never asked about their interests.  Their psychiatrists just asked about their voices, their paranoia and their sleeping habits.  The psychiatrists asked about their illnesses, not about their lives. 

In medical school, I was taught the clinical model for approaching my work.  A patient comes to see the doctor with a problem or weakness. The doctor and patient would have an unspoken agreement that the doctor was allowed to poke and prod the patient and that the patient would tell the doctor things he wouldn’t dream of telling his best friends.  In general, if the patient submitted to the doctor’s will, then the doctor would use his strength and expertise to cure him.

My role as an aspiring doctor was to make a medical diagnosis, which I might or might not share with my patients depending on whether or not I thought they could handle it.  I would prescribe some sort of treatment, usually medication.  The patients would consent to comply with my treatment plan and sign a waiver that said they wouldn’t sue me if anything went wrong.  During return office visits, I would assess the symptoms of the patients’ illness, any serious side effects they might be experiencing and whether they were complying with my treatment orders.  This process would continue until I had cured, or at least stabilized, the patients’ illness.

Practicing medication collaboration

At the Village, I developed an entirely different recovery model of medication collaboration.  Now, a person comes to me with a goal, something they want to accomplish or change about their lives.  Through the process of planning this change together, the member and I discover things that I can do to be helpful.  It may be that some of the knowledge I have about neurochemical illnesses, emotional conditions, interpersonal relationships or social service systems may be helpful.  Or, my knowledge about playing the piano, using the Internet or the Los Angeles Lakers may help.  Hopefully, I’m aware of some treatments, usually including medication, that may assist members in reaching their goals.  I consent to help them reach their goals by educating them and offering them choices. 

The Village members I collaborate with may choose to include something I’ve offered them in their plan if they think that my assistance will help them meet their goals.  When they return (and virtually all do; I can usually find something helpful to do, even if it’s just writing a letter, filling out a bus pass form or giving them a hug!), we discuss how their plan is coming along, not how their illness (that they may or may not think they have) is being treated.  There is very little reason for “noncompliance,” because they, not I, are making up the goals and the plans. 

If they choose not to take medications, I continue to see them and try to help them with their goals, instead of becoming coercive or getting into a power struggle with them.  I may need to build a stronger relationship, do more education, create more goals or connect medications to their goals more clearly.

Giving meaningful information and choices

My relationship with George is a good example of this style of collaboration.  George came to me asking for help because he was hearing voices.  I didn’t initially ask him what was causing the voices.  Instead, I asked him how his life would be better if he didn’t hear the voices.  He told me that he wanted to date women, but whenever he tried to talk to a woman the voices taunted him, calling him stupid, fat and ugly.  He said it was so demoralizing he didn’t even want to try anymore. 

To help George, I used my knowledge of psychosis and anti-psychotic medications.  I also used my limited knowledge of women.  I told him women might be more likely to go out with him if he was cleaner and dressed nicer.  A car would help, too.  We could work on those things while we were working on the voices.  I wrote down a list of 10 possible medications.  I told him the most common side effects from the medications on the top of the list were stiffness and shaking and from the medications on the bottom of the list were sleepiness, dizziness, dry mouth and blurred vision.  I asked, "What do you want to try?"  I also told him we could start with a larger dosage that might work faster, but have more side effects, or we could start with a smaller dosage that might work slower but be easier for his body to adjust to.  He chose 5 mg. of Haldol at bedtime. 

From the beginning of our relationship I was giving George meaningful information and meaningful choices.  I was treating him like a colleague and partner.  I was empowering him.  When he returned, I didn’t begin by asking how the voices were.  I asked if he’d talked to any women, since that was his goal.  He said “no.”  Although the voices were much quieter, his hands were shaking so terribly that he was too embarrassed to talk to anyone.  I realized that even though I had successfully treated his illness, I hadn’t helped him reach his goal.  George and I reviewed the medication choices again and kept working together to improve his life.

My relationship with Gail is another example of medication collaboration.  She has had severe schizophrenia since her early teens.  She was once catatonic for an entire year and it seemed unlikely she would ever leave the state hospital.  Nevertheless, she did get out and, with the help of hugs and acceptance from a dear staff person named Joannie, she began building a life. However, she still had to cope daily with disturbing voices and paranoia despite high dosage anti-psychotics. 

When Clozaril was released Gail wanted to try it.  I was reluctant because of her seizure disorder and Clozaril's numerous and even potentially lethal side effects.  We learned about the risks and benefits together, reading papers, watching videos and even conference-calling an expert.  The expert and I advised against the Clozaril, but the decision was ultimately hers.  How could we judge whether voices or seizures were worse for her?  When she tells this story, she emphasizes the moment when she got to tell the doctor what she wanted for herself.  She was empowered in that moment and she chose Clozaril.  Surprisingly, at very low dosages her psychosis went away for the first time in 20 years without any bad effects.  She’s used her power to go on to marriage, owning a condo, working full time and getting off SSI.

Learning from obstetrics and oncology

Two other medical fields, obstetrics and oncology, have already achieved substantial empowerment of their patients without the aid of any dramatic technical or clinical breakthroughs.  The practitioners in these fields have instead transformed their priorities, their roles and their relationships.  I believe the conceptual shift underlying this transformation was when obstetricians began viewing pregnancy and giving birth and oncologists started seeing surviving with or dying from cancer, not only as medical conditions, but as profound life altering experiences.  How the patient experienced these events became as important as how they were clinically treated.  Serious mental illnesses are clearly also profound life altering experiences affecting almost all areas of life.  How people experience these events are as important as how they are clinically treated.

This conceptual shift has given rise to five very practical, empowering changes in both obstetrics and oncology:

1. Increased treatment collaboration.  Education about their conditions and the treatment options and active choice (rather than compliance) by the patients has been emphasized.  Women are given classes about the process of pregnancy and delivering and about the various interventions (including anesthesia) that are available.  They actually choose what they want.  Similarly, cancer patients are taught about cancer, surgery, radiation and chemotherapy, and they make choices.  The goal is increased understanding of their conditions and collaboration on a “birthing plan” or a cancer treatment course.  The professionals welcome, indeed foster, their patients’ efforts to learn about and participate actively in their treatment. The professionals become consultants or coaches assisting patients to manage their conditions instead of managing it for them.

2. Increased use of self-coping techniques.  Patients have been encouraged to actively treat themselves as an adjunct to medical treatments. Lamaze breathing techniques to reduce pain and muscle strengthening exercises to avoid tearing are now commonplace for pregnant women.  Visualization techniques for treating cancer are growing in popularity.

3. Increased use of natural supports.  Including family members or friends as part of the childbirth experience or hospice team is now routine.  Isolating patients with only professionals around them during their most difficult times is very rarely a medical requirement.

4. Increased use of home or home-like settings.  Home births and birthing centers where patients bring their own belongings are replacing sterile delivery rooms.  Home health and hospice settings are replacing hospital wards for cancer patients.  The medical equipment, while still often essential, is embedded in a home-like environment instead of becoming its own environment.

5. Increased use of peer support.  Many pregnant women (and their partners) go to classes with other pregnant women, sharing their experiences and supporting each other.  Cancer survivor groups and grief groups for families of people who die from cancer are common.  Especially for cancer patients, a sense of pride at being a “cancer survivor” has replaced a sense of shame.  These groups can be activity directed or informational.  To be supportive a group does not have to be exclusively a “support group.”

As I analyzed these factors I began to realize that empowerment is not just an abstract value.  It is an actual set of practices. If these five practices are employed, empowerment will result.  These five practices are also a pretty good description of psychosocial rehabilitation and have already been developed for mental health.

The mental health establishment, however, has decided that these practices are to be used only after the professionals do the “real” clinical work of treating patients’ symptoms and “stabilizing” them rather than using the practices as the foundation of treatment.  Undoubtedly there were obstetricians and oncologists, surgeons and nurses, radiation therapists and social workers who needed to be dragged into these empowerment practices.  If they did it, so can mental health professionals.

Putting empowerment into practice

At the Village, we take empowerment very seriously and try, through self-evaluation, to improve continually and add to the empowering qualities of our program.  Here is a partial list of some of our empowering elements:

·    Members set their own goals and choose what parts of the program (including medication) to participate in.

·    Every six months, members are given the opportunity to switch teams, case managers and psychiatrists without providing a justification for the switch.

·    Staff shares bathrooms and lunch tables with members.  We don’t have staff lounges or any part of our building that is off-limits to members.

·    Members play an active role on our advisory board and our grievance committee.

·    Staff meetings, trainings and retreats are open to members.

·    We hire a significant number of full-time regular staff who have a mental illness and/or are recovering from substance abuse.

·    Members often participate with staff in doing presentations about the Village.

·    We survey members individually and anonymously as part of staff evaluations. 

·    Members can drive the Village vans after passing a driving test and gaining insurance approval.  In fact, the vans are mostly driven by members who are paid for driving other members to events.

·    Members can read their own charts whenever they want.  They can even write in them.

·    We have a social activity calendar based on what members want to do (and will help with) and not based on what we think is good for them.

·    We provide scholarships to members to attend professional/educational conferences.

·    We have a Village band (named “The Delusions”) that is made up of both members and staff.

·    We are affiliated with a consumer run network of self-help clubs, Project Return: The Next Step.

This is not meant to be a complete list of empowering practices.  There are probably other programs that do even more or different things to empower their members.  Ideally, a program would conduct ongoing evaluations and continually attempt to increase its empowering elements.

All of these practices do require that staff give up some sacred power and the division between themselves and members.  Many of our staff were anxious and expressed concern about nearly all of these practices.  And, of course, there have been a few problems that needed to be worked out in their implementation.  However, nothing very bad has happened as a result of these practices and a great deal of member empowerment has taken place.

Offering respect and honesty

During my years at the Village, I have come to realize that true empowerment requires helping people get “real world” experiences. Teaching people skills, including emotional skills, in a treatment setting rarely builds confidence.  There’s a big difference between sitting in a group talking about how artistically talented someone is and helping that person actually set up a successful exhibition of his artwork.  I believe success builds empowerment more than positive thinking does. 

Setting up artificial successes or over-celebrating meaningless accomplishments is more likely to be perceived as condescending than empowering.  To empower people, give them a chance to come to bat and a good pitch to swing at and don’t ever drop their fly ball on purpose.  To empower people, believe in them through numerous “failures” and don’t give up on them even if they want to give up on themselves.  Encourage them to try something new and support them in their efforts.  Often, they will be pleasantly surprised to discover skills and “power” they didn’t know they had.

Only an empowered staff can empower the people they work with.  If a program’s staff culture is dominated by fear of risks and blame avoidance or if it fosters lack of initiative by demanding that staff follows orders and policies without questioning them, they won’t feel empowered.  Staff needs to have power in order to give it away and needs to model being empowered to be believable.  “Institutional helplessness” isn’t a growth medium for empowerment.  What if I had told Clara not to take any risks helping Don get his own apartment?

Late one evening the medical director of a local psychiatric hospital approached me in the doctors' parking lot.  He said that he’d been watching the Village staff, trying to figure out why the Village succeeded with so many patients that no one else seemed able to help.  He said he thinks that the special way all of our staff, from top to bottom, show respect to our “patients” and treat them like important people may be the reason.  I think he is right.   At the end of the day, offering respect and honesty to people with mental illness may be the key to empowering them. 

Once people have sufficient hope, see a vision for the future and feel empowered, they can take control of their own lives again.  They can assume more responsibility for themselves. 

Bonnie, a woman with manic depression, told me that she used to become very psychotic and violent. The police would tie her up and take her to the hospital.  The hospital wasn’t so bad.  All the people there were very nice to her and they took care of everything.  They made sure her belongings were safe.  They fed her, bathed her, clothed her and gave her medication.  And it worked.  Within a week or two, Bonnie felt much better, thanked them and went home, back to her life as it was before.  Within a couple of months, she would become psychotic and violent again and get dragged back to the hospital.  After a while the hospital staff started blaming her for being a “revolving-door patient.” 

It took Bonnie three years to figure out what was wrong with this process – she had never been included in any aspect of her own recovery.  She didn't know why she was suffering, how it connected to the rest of her life and what changes she'd have to make to stop the cycle.  The clinicians in Bonnie’s life were spending all their energy and resources forcing her to get short-term symptom relief instead of engaging her in a process of self-understanding, self-responsibility and change. 

As professionals, we are taught to take care of others.  We see our jobs as helpers, protectors and comforters.  Unfortunately, being someone’s caretaker is often at odds with helping him or her learn self-responsibility.

Supporting risks instead of avoiding stress

Another way that we, as mental health professionals, may keep our clients from assuming self-responsibility is by convincing them to avoid stressful situations. Among mental health professionals, one of the most pervasive rationales for supporting stabilization instead of recovery is that stress causes relapses and re-hospitalizations.  This is actually very hard to demonstrate.

It is easier to demonstrate that avoiding relapses is connected to taking medication, having an ongoing supportive case manager or therapist, having a good social support system (friends, staff and/or family) and not abusing drugs.  Actually, negative symptoms (low energy, poor motivation, emotional blunting, distancing and passivity) are better predictors of disability than positive symptoms or relapses.  Negative symptoms are clearly worsened by lack of stimulation, low expectations, inactivity and hopelessness (or in other words, by the absence of stress.)  A member recently told me that he’d made a mistake in quitting his job.  Sitting at home doing nothing was causing him far more paranoia than the stress of work ever had.

Personally, I think that avoiding stress reduces recovery more than it reduces relapses.  By avoiding stress, members are avoiding the opportunity to build a social network and a life that will, in turn, help them battle their symptoms.  Often, protecting people from stress is protecting them from the opportunity to grow.  Clinicians are often too frightened to “permit,” let alone encourage or support, people with mental illness to follow the “normal” developmental path of risks and growth.  “Normal” people all fail repeatedly and keep growing anyway. 

Sometimes I wonder if we, as mental health professionals, aren’t protecting ourselves from the pain of our clients’ failures more than really protecting them.  At the Village, our members may not succeed until their fifth (or 10^th or 20^th) attempt to get a job, live in their own apartment, stop abusing substances or take their medications responsibly.  I believe it is our job to keep hope alive and support our members through ongoing stress and risk-taking, failures and successes as they recover.

Engaging not forcing

Shifting priorities from care taking to promoting self-responsibility has enormous implications for the use of forced treatment.  One day, Hawk’s mother called the Village’s homeless outreach team begging for help.  Hawk was seriously psychotic and refusing to take medications.  His family had been forced to keep him out of the house, but felt they had to keep protecting him and maintained contact by letting him live in his car parked in front of their house.  The psychiatric emergency team had talked to Hawk, decided he didn’t meet involuntary treatment criteria and told Hawk’s parents there was nothing they could do.

Tim, a Village nurse, went out and sat in the car with Hawk.  He kept doing this for several weeks until he built a relationship with Hawk.  Finally, Hawk agreed if Tim brought some pills to his car he’d take them.  Several weeks later he agreed to come into our program for a shower and a lunch.  After a while he started working at the Village making lunches for other homeless people.  His mother sent us a beautiful thank you letter saying we were the help she’d prayed for.  It is almost always better to begin engagement by entering someone’s world rather than by forcing treatment.  Admittedly, when someone is in serious danger, I have been forced to try both at the same time.

Stories like Bonnie’s and Hawk’s have helped to convince me that our overriding goal as mental health professionals must be to promote self-responsibility and recovery rather than to take care of people, relieve their distress and protect them.  We must look out for those times when we’re destroying hope, taking away power, or decreasing self-responsibility in the name of helping and taking care of someone.  I have a natural desire to fix things for others.  Sometimes it takes all my emotional effort to let someone struggle with working things out in their own way (especially when it isn’t my way) so they can grow.

Supporting member choices

At the Village, we don’t spend a lot of time and resources assessing whether members are ready to do something or not.  In general, our philosophy is that they are ready “enough.”  If members want to do something, we support them.  There is nothing more devastating than being told you’re not ready.  In truth, no one is ever really ready to do anything important.  (I dare anyone who has married, had children or rented their first apartment to disagree.) Instead of assessing members’ readiness, we assess the support they will need to be able to do what they want to do. 

When I talk with members, I routinely ask them where they would like to live.  Even if they have few independent living skills, they rarely say, “I’d like to live in a crowde