ADDRESS TO GEORGIA CONSUMERS

Keynote address given at the 10th Annual Conference of the Georgia Mental Health Consumer Network

 

by Sally Clay

 

I don't think I will ever recover from mental illness. The last time I got manic was four years ago, and it was the same old story. I holed up in my apartment, turned up my stereo as loud as it would go, and embarked on a psychedelic trip to nowhere. This was the same trip I have taken countless times, so many that I have lost track of them. But they have been going on for nearly 40 years. They always start with intense visions of spiritual power and worldwide enlightenment. They always end in disaster.

Four years ago, I was enjoying the first part of the mania, listening to my favorite rock artists and gathering all of their messages about saving the world. Unfortunately, my stereo was directly below the bedroom of a young professional couple. This was no problem during the first day, when the couple was away at work. But when I get manic I do not sleep. So my loud rock music continued well into the night and into the wee hours. Shortly after midnight my unfortunate neighbors began calling, begging me to turn down the music. I said "yes," and turned it down a little. But within 5 or 10 minutes I turned it up again, full volume.

Somewhere in the middle of the night of the second day, after several fruitless phone calls, my neighbors called the police. The police came to the door and warned me about the loud music, and I promised to turn it down. But soon I turned it right back up again. This happened several times before dawn, and before my neighbors went to work, sleepless and angry.

On the third night there were more phone calls, and more warnings from the police. This time, however, the police were not so patient. After a couple of warnings, they arrested me, turned off the stereo, and took me to jail. I spent the rest of the night on a hard metal cot in the jail, and in the morning went home again to my stereo.

To make a long story short, I was dragged off to jail three times, each time returning to my apartment and my fantastic mental journey, which became progressively wilder and wilder. Finally one night, I decided to get drunk, getting even crazier than I already was. This time it was not the police who came to get me, but an ambulance. I was taken to the local hospital, where I slept off the alcohol in the emergency room. In the morning, I was assured that I was in the hospital on a voluntary basis. All I had to do was to have a brief interview with a psychologist and then I could leave.

If only I could have kept my mouth shut! I managed to have a fairly rational conversation with the psychologist, until I complained about my neighbors and my trips to the jail. Then I blurted out to her, "Where is Dr. Kavorkian when you need him!" I meant this as a joke, of course. But the psychologist did not laugh. She decided that because of that statement I was suicidal -- and in two shakes of a shrink's tale, I was whisked away to the psychiatric ward on the top floor, involuntarily committed.

I spent a miserable week on the psych unit, forced to swallow medicine that I tried to refuse. When I was finally released, I found that I had lost my job, was evicted from my apartment, and faced a stiff fine, possibly even a jail sentence, for disturbing the peace.

And that is how I wound up moving from Massachusetts to Florida. As with other manic episodes in the past, I had to pick up the pieces of my life and start again from scratch. It was not so easy this time around, because I was not as young as I once was, and not as resilient. After the brief time of mania, I had to cope with weeks of depression and despair. Nevertheless, within a few months I had settled down in my new home and again resumed my career as a peer advocate.

I have not recovered. I know only too well that I am still vulnerable to episodes like the last one. For me, recovering from mental illness would be like recovering from being human. The manic highs and depressive lows I have experienced for all these years are, for better or for worse, part of who I am. If I were given a magic pill that would clear up my depression and make me constantly blissful, I would have to learn to think all over again, because I would not recognize my own mind. If I were given another magic pill that would put the reins on my flights of manic fantasies, what would I do? I might be a lot more sensible than I am now, but I would no longer be "me" anymore.

There are plenty of people who do recover. Tipper Gore has recovered, and so has Mike Wallace. In the drop-in centers where I have worked, I have met people who were told they would be schizophrenic for the rest of their lives, yet who got back on their feet and never got sick again. As I get to know people who work in the mental health system, I find case managers and therapists, and even doctors, who were at some time hospitalized for mental illness and have now recovered.

Yet most of us who identify as mental health consumers have not really recovered. For me, a final state of recovery is no longer my goal, for I have learned that someone with serious mental illness does not have to recover to be successful. For the last 20 years I have worked as a peer advocate, starting two drop-in centers, and helping to form a third one, the PEER Center in Fort Lauderdale. I have been hired as a consultant by a number of other organizations, and I am now on the Steering Committee of a major federal research project, the COSP Multi-site Study. I have not recovered, but I have healed from the wounds of stigma and shame. I have friends, a successful career, and even a decent salary. I have found my place in the world.

Although recovery would be nice, it is not the most important thing. The important thing for me, and for other mental health consumers, is not whether we are "normal," but whether our lives are satisfying and meaningful. What is important for us is, first, to gain stability over craziness, and, second, to become empowered to live and work with other people. When we learn to achieve these two states of mind, the rest will follow. Even without full recovery, we can heal from the fears and the anger that are the true blight of mental illness and that are sometimes the result of the treatment that we have received.

Stabilizing

"A lot of beneficial effects depend on first gaining stability." - Julie

 

Over the years I have talked a lot about civil rights for mental patients, and about empowerment. But just the other day, when I met with the Consumer Advisory Board at the PEER Center. I was reminded that before we can even consider becoming empowered, we must find a way to stabilize the symptoms that keep us from living day to day. As we go along here, I will show you on the screen some of the comments made by the consumers on the COSP Advisory Board. The next one, by Mark, makes the obvious point that, for many of us, psychiatric medications are often necessary to bring our symptoms under control:

"Only after stabilizing on medication could I deal with the mechanics of life.
Until then I was surviving and staying out of a lockup situation in hospitals." - Mark

 

Becoming stabilized is not the same thing as recovering, and is not yet even empowerment, but it is essential for us to gain some control over our own minds and not to live at the mercy of our delusions or hallucinations or depression. For some consumers, the medications taken while in crisis are sufficient, and once the emergency is over they can get off the meds and maintain stability. For others, it is necessary to find the right dose to continue taking to maintain stability. For still others, meds and other forms of psychiatric treatment are not the answer, and tools for stable living are found in a spiritual context:

"I recently had a spiritual epiphany that puts perspective on my life and will lead to further recovery that has nothing to do with traditional treatment or housing, employment, etc." - Carl

 

In my case, all of these tools apply. When I am in the midst of a manic episode, only psychotropic drugs will bring me down. After I am stabilized, I continue to take a low dose of lithium. But what is the greatest preventative for me is has proved to be a spiritual practice. A few years ago I studied intensively under a Buddhist lama and learned some meditative practices. I followed these practices faithfully for several years, and as a result the manic episodes that had plagued me on almost a yearly basis ended for a long time. The episode that I described earlier was the first one I had experienced in nearly ten years, and it is the only one I have experienced since I started the spiritual discipline.

Whatever means we choose to reach stability, it is important to find one that works for us and that we choose ourselves, not one that is forced upon us. Otherwise, to talk about empowerment, healing, and recovery is futile. Empowerment depends upon self-determination, and without empowerment, successful living in the community will be out of our reach. Reaching stability is only the first step.

"When you are in depression there is no Meaning of Life.
Finding no meaning in life is the definition of depression.
After I got stabilized, meaning developed." - Sandy

 

Empowerment

 

Empowerment begins with a sense of meaning and purpose. It means finding the inner authority to act as a free and useful person. Qualities of inner empowerment include self-esteem, confidence, and respect for others. To reach this state, we must experience three different types of empowerment: civil empowerment, social empowerment, and personal empowerment. When we are fully empowered, we enjoy the knowledge that we are worthwhile persons who are free to make our own choices and to live our lives "on our own."

Civil Empowerment

The phrase "On Our Own" has been a catchword in the consumer movement ever since Judi Chamberlin wrote her book of that title a quarter of a century ago. In her book, Judi courageously pointed out some of the ways that society and the mental health system disempowered mental patients. Much of what she said then is still true, especially when it comes to self-styled "advocates" who promote forced treatment and involuntary outpatient commitment. Treatment by coercion is not healing, and restricting civil rights in the community is not empowering.

"For the quality of life outcome to be positive, mental health services
must be self-chosen and self-directed." - Bonnie

 

Civil empowerment means that the job of mental health services and families is not to force us to fit some theoretical model of recovery, but instead to provide an environment of personal respect, material support, and social justice that encourage self-determination. Most adult mental patients are citizens of the United States and have the right to vote. As citizens we are also entitled to full protection under the Bill of Rights and other human rights legislation under the United States Constitution. In the past, the human rights of mental patients have been frequently ignored and often violated. The civil rights of mental patients must be accorded the same respect as are the rights of other citizens. A patient bill of rights must especially include safeguards to the rights of mental patients. The most important of these rights, informed consent, must become as fundamental to psychiatric treatment as it is to medical treatment.

Civil empowerment also means adequate funding for community services and consumer-run programs. Because mental patients are stigmatized and ignored in their communities, funding for community mental health and public assistance programs is woefully inadequate, both on the national and local levels. In addition, the public bureaucracies and their systems of entitlements stifle and degrade the people they are supposed to help. Mental health professionals can join with mental health survivors and our families in raising the awareness level of government officials and the general public on these issues.

Only when mental health consumers are accorded the rights of all other citizens will all of us be able to reach the freedom of empowerment. Only when mental health consumers receive the services we need in the community to get back on our feet, will we be able to walk on the road to recovery.

 

Social Empowerment

"Employment and housing have to come before quality of life."- Matt

 

It sometimes seems that the general public cannot imagine that a mental health consumer can live in the community like everybody else. But why not? Mental health consumers want the same things in life that any other American wants.

The Declaration of Independence allows us to pursue happiness, so it is not unreasonable for us to what that, too. The American Dream is based on the foundation of home, work, and family, and most people depend on all three of these for any happiness we can claim. But it is hard to imagine how anyone could even think of personal empowerment if they are not only fighting the fears of their own mind, but also living alone among strangers, unable to get a job, and not sure whether the food stamps will last another week, or whether the HMO will pay for their medications. Mental health consumers, like everybody else, need decent, affordable housing. They need the spectrum of housing, from structured residences to reasonably priced independent apartments. They need jobs that are meaningful to them and that pay decent wages, and sometimes they need job training programs and educational subsidies.

Most of all, of course, ex-mental patients need a network of friends and supporters. Although this aspect of social empowerment cannot be legislated, structured, or bought, it can be fostered by the moral and financial support of programs such as drop-in centers, peer advocacy programs, and other consumer-run organizations.

In my work with three drop-in centers over the last 20 years, I have seen countless people arrive on their first day demoralized from hospitalization, numb from overmedication, and sloppy and disheveled because they don't have enough self-respect to take care of themselves. I have watched as these same people brighten up after meeting and making friends with other members who have gone through the same experiences. I have seen people whom even I would write off as helpless and hopeless become involved with a peer center and suddenly blossom into vibrant human beings who go back to school or get jobs, and in general join the rest of the world.

"Volunteering is my work as a client in recovery. I feel more in recovery now, working for the drop-in center, than I did when I had one under the Dept. of Rehab and Career Services."
- Joe

 

In my own case, working for the drop-in centers and in other areas as a peer advocate changed my life forever. It has given me the meaningful career that I always wanted, and it has also given me a circle of friends across the country.

 

Personal Empowerment

"The meaning of life is helping other consumers." - Bobby

 

Personal empowerment is a goal that we can set for ourselves, and we can reach it, whether or not we actually recover from mental illness. We can feel that our lives have meaning, and that we are the masters of our own fate. We can live in our neighborhoods, get married and have a family, go to work every day, and vote for whomever we like in elections. We may still be struggling with symptoms and other effects of our experience. But -- hey! -- everybody else in the world has problems, too, and we are not really so different from the next person down the block. These are some of the ways that a mental health consumer can work for personal empowerment:

GET PEER SUPPORT - The most powerful tool for empowerment is already in our hands. Peer support has been a proven tool for recovery ever since Alcoholics Anonymous began many years ago. Sometimes called the "Peer Principle," peer support means that we gain strength and encouragement from talking and working with other people who have had the same experiences that we have. Eastern cultures have a word, maitri, that means both loving kindness and friendliness. The power of simple friendship cannot be underestimated.

JOIN WITH PEERS - An effective first step towards empowerment is to join a peer support group, a drop-in center, or other consumer-run activity. The old adage, "There is strength in numbers," is especially true for mental health consumers. A consumer-run drop-in center not only provides an opportunity for support and friendship, but often offers skills training and employment, and even political clout.

EXPRESS YOURSELF - Learn to talk and express opinions. One of the deepest wounds of being labeled mentally ill is that we learn to mistrust our own thoughts and beliefs, and we learn to keep silent about what we really think and feel. Break that silence! Learn to stand up for yourself. Learn also to use art and creativity to express your deepest feelings and beliefs. Some of the greatest artists in the world also experienced mental illness -- Virginia Woolf, George Frederick Handel, and Michelangelo, to name just a few.

MAKE CHOICES - Empowerment depends on learning self-sufficiency and independence. We must learn to make and take responsibility for our own decisions. This is not so easy in a system of psychiatric services that fosters dependency. Even in a situation in which your opinion is disregarded, it is important always to defend your human and civil rights, especially your right to make choices. Once you develop the strength of your own freedom, you can actively work as an advocate for other consumers, helping them avoid situations in which treatment is forced or their life is controlled by others.

IDENTIFY SKILLS AND INTERESTS - Figure out what you like to do and what interests you. As Joseph Campbell once said, "Follow your bliss." Activities that really mean something to you and that make you happy can lead to new friendships and even employment. If you are a computer "geek," get a job in the computer lab at your drop-in center; if you are a "people" person, apply to work in crisis counseling or in housing. Such activities are your tools for long-term recovery and independent living.

Other tools for empowerment are less obvious but equally essential:

CULTIVATE ACCEPTANCE - From the start, regard yourself and others with unconditional respect. Honor your own best instincts, and grant the same courtesy to others. You may not like some of your symptoms and bad habits--but you are not your symptoms, or your bad habits, or your illness. All of us have a fundamental worth that is our true identity, who we really are. That is human nature, and it is up to us to recognize that good nature in ourselves and others.

LEARN TO APPRECIATE - Raising hope is essential to overcoming mental illness. Your attitude of enthusiasm and appreciation can lift the spirits of other people. If you also appreciate yourself, you can maintain your own hopes and positive attitudes. Compliment yourself when you succeed at a task that previously seemed impossible. Pat yourself on the back whenever you take a step toward independence and self-respect.

FIND A MENTOR OR SUPPORTER, THEN BECOME ONE - Most people are genuinely pleased when they can do something to help another person, or when they feel they have done the "right" thing. This has certainly been true for me and for my best friend, Dianne Côté. Dianne has told me that her empowerment began when she received support and encouragement first from a nun, and then from me. For both Dianne and me, working to help other consumers has benefited us as much as it has the people we help. When you recognize the better nature in yourself and act upon it by helping others or doing some kind of compassionate work, you promote your own recovery. When another consumer learns to trust you, and asks for your support, you have been given the opportunity to have a positive impact in a person's life, and this is a precious obligation. The "Peer Helper Principle" means that when one peer helps another, both benefit.

 

Healing from Fear and Anger

"Use Anger, but Don't Abuse It" - Sally

 

The two greatest obstacles to empowerment and recovery are fear and anger. The steps to empowerment that we have just described are also the steps to escape from the fears that may have paralyzed us in the past. When we feel in control of our own lives, our fears of being controlled by outside forces are diminished. When we help other people, we learn to feel useful and important ourselves. Empowerment may be considered another word for freedom from fear, the basis of all healing.

Unfortunately, another consequence of seeking empowerment is not always so positive. Many consumers find that, when they first join a peer support group, all of the anger that they have stuffed away bubbles up. Most of us are angry at the nasty blow that life has dealt us, with this baffling pain and confusion called mental illness. Many of us are even angrier at the way we have been treated because of it. We are angry with the mental health system, with our families, and with ourselves. It is empowering to find that we are not alone in our anger, and that what has happened to us has also happened to others.

Recognizing our anger can be empowering, and a lot of people in the consumer movement have used anger as a springboard to action, enabling them to make changes in the system and to open up their silence so that they can express themselves.

Unhappily, some consumers never get beyond the anger. One of the most unpleasant characteristics of the consumer movement is that some of the people in it are stuck in negativity, and remain consumed with anger. These people sometimes adopt an almost spiritual belief in anger, and actually consider that hate and anger are a sign of empowerment and the only way to change the mental health system. They are not.

The bitterness of some consumer leaders turns off many consumers and many potential supporters, and this hostility is the single biggest reason why our movement has not been accepted by the general public. It is the nature of rage that, when cultivated and fueled, it pervades every aspect of one's life. Anger towards the system all too easily slips into anger towards each other. Consumers who feed on anger are generally unhappy, not empowered. They undermine the very cause they claim to work for, and they are notorious for backstabbing their own peers, damaging both themselves and others.

This is why the attitude of acceptance is a crucial step to empowerment, and why it is essential to recognize the goodness inherent in every single human being, even those who have done us wrong. Unconditional respect for everyone and belief in the goodness of our enemies are characteristics of nonviolence, and are the ingredients needed in the consumer movement to bring us success as a civil rights movement.

 

What is There to Recover From?

"Recovery is subjective to the individual." - Matt

 

Members of the Consumer Advisory Board at the PEER Center, and other consumers I have spoken with, all agree that recovery is a very personal and individual concept. Some people think that they have recovered already, and some think that they will never recover. Interestingly, most of us cannot even agree on the definition of what recovery is.

"Recovery means going on with living, even when you are feeling lousy.
I'll never recover from depression, but I can live on a daily basis." - Maria

 

If I were to choose a watershed moment in my life, the time when I finally gained confidence that I was worthy to live alongside other people without the shame of being mentally ill, it would be when I first visited KTD, the Tibetan Buddhist monastery in Woodstock, N.Y. where I had an interview with Khenpo Rinpoche, the head lama. I fervently described to him the fantastic journeys I had taken in my mind -- all the times that I had visualized scenarios for changing the world and saving other people. As I described these psychotic episodes, I hung my head in embarrassment, but admitted that I could not get it out of my head that there was truth in these visions, and that was why I kept coming back to them. I begged him to give me a spiritual discipline that would protect me from these painful episodes, and that would cure me from mental illness.

To my great surprise, my teacher smiled at me and said without hesitation that, if I felt that I had learned something from my experiences, then I should take what I had learned back to the community and use it to help others. It was as simple as that. He did not even give me instructions in the esoteric spiritual practices that I had gone to him hoping to receive.

That was in the late 1970's. After my interview with Rinpoche, I returned to my home in Portland, Maine, and continued trying to hold down a job and live my life. I did not know what to do with the advice my teacher had given me. It was not until 1981, and another involuntary hospitalization, that I finally figured out what I had to do. That was when I joined the Alliance for the Mentally Ill and later organized one of the first consumer-operated programs in the country, the Portland Coalition for the Psychiatrically Labeled. I spent several years working for the Coalition, all the while continuing to experience yearly manic episodes and hospitalizations.

It was not until 1987, when I finally returned to the monastery, and lived in Woodstock for a few years, that Rinpoche gave me instructions in the Green Tara meditation. By regularly following that spiritual discipline, I trained my mind and finally found mental stability. I no longer had to live under the constant threat of psychosis, and I was no longer helplessly dependent on the mental health system.

"The medical model of recovery is that one fits into social norms-
it assumes that you want to manage the symptoms that might bother others." - Bonnie

 

The currently fashionable view of mental illness is that there is something fundamentally wrong with us, that we have a "broken brain." Under this view, the very defectiveness of our brains means that we cannot decide for ourselves. Especially it means that we cannot be trusted to choose our own treatment or our own way of life.

Under the medical model, the definition of recovery, when it is discussed at all, is limited to the idea of stability. The adherents of the medical model are stuck in the view that recovery means only symptom management--that if mental patients would only take their meds, everything would be fine. But as consumers, we know that although, medications can manage our symptoms, they cannot give us quality of life.

I for one reject the medical model. I am not simply a brain, an object that can be broken. My life is much richer and more complex than that. I believe that if I am not allowed to choose my own way of life, and to work for my own empowerment, my mental stability will remain fragile, and I will always regard myself as defective and hopeless. Without regarding myself as a human being, first and foremost, I will be forever defined by my illness.

In other areas of medical care, it is widely acknowledged that a patient's free will and positive motivation are critical factors in recovery. The person most likely to get well-to become empowered-is the person who feels free to question, to accept or reject treatment, and to communicate with and care for the people who are caring for him.

"Recovery is not one destination -- it's a process." - Martha

 

My definition of recovery is the same as the definition of what it means to be fully human. To become fully human means regarding oneself, and everyone else, with friendliness, treating both oneself and others with loving kindness and respect. It means recognizing the goodness that is in everyone since birth. If I can acknowledge that goodness in other people as well as myself, then I will always be able to get along in the world, because other people need acceptance just as much as I do.

If I can live every day in my community alongside other people who have needs and desires and problems that are very much like mine, then it really is not so important whether I still occasionally cope with my particular symptoms or foibles or mistakes -- whether they be called mental illness or not. My own identity -- who I am as a human being, deep down -- is who I have been all along, and that is something good. That has never been broken.

 

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