Back to Essays
COMMUNITIES, REAL & VIRTUAL
A talk given at the Pennsylvania Consumer Conference, June 26, 1995
by Sally Clay
Recently I moved into a new apartment. It is in one of two long, brick buildings set off the main road and surrounded by woods and marshland. The setting is very friendly.
I have lived there for nearly two months, yet I still do not know any of my neighbors. Some of the residents smile in passing, but every time I try to strike up a conversation, they are either too busy to talk or unwilling to listen. Even so, this is an improvement over my last apartment. There, I recall, I would sit on a rock in the lawn outside my building, and say "hello" to anyone who appeared. On one such occasion, one of my neighbors came along, and I said "Hello." But the person did not even look at me. He walked right past; he looked right through me.
It has occurred to me that perhaps other people do not like my appearance. It has even occurred to me that they recognize that I am an ex- mental patient, and are shunning me because of that. But those are not the reasons. I am sorry to say I am isolated in my own home for the same reason that we are all isolated in our own world. We are living today in a world ruled by fear. Where do we find community in such a hostile world?
I found a community 15 years ago when I joined the mental patient liberation movement. For many years I had tried to stay away from other mental patients. I had kept myself and my psychiatric label in the closet. At the age of 40, I came out of the closet and identified myself publicly as a consumer. After that, the friends I made were all ex-patients. I became a part of an intimate circle of psychiatrically labeled people throughout the country. This is a real community. Within it, people understand and support each other, and everyone has a sense of belonging. At the same time, most mental health consumers wistfully talk of making it in the "larger" community, or the "real" world. There is always the feeling that a better community is to be found somewhere, if only we could get there, if only we could make the grade.
This year, for the first time, I made the big leap out of the consumer/survivor community and into what I thought would be this "larger community." I took a job as therapist for Windhorse Associates, an alternative treatment program, and for the last year I have worked and socialized mostly with non-psychiatrically labeled people. It has been an eye-opener for me.
I have been shocked to discover that, even in the real world, the "larger" community is hard to find. I now have another circle of friends, people who are not psychiatrically labeled. But the Windhorse circle is no more part of a larger community than was my circle of consumer/survivors. And I suspect this is true for most people these days.
Within our workplace and our homes, all the faces remain the same. Within our conversations, the same familiar ideas circulate, and re-circulate. Everywhere else we rub elbows with strangers, with people who are suspicious and mistrustful. We often feel that way ourselves. We do not know the person ahead of us in line at the supermarket, and when we visit our doctor or even our pastor, we catch him glancing at our record to remember our name.
The word "community" is on everyone's lips, but the reality is that we are living in a vast marketplace, where everyone is a consumer, but no one is a neighbor. Every day we are bombarded with goods gone ballistic and services turned sadistic. Even in the best of neighborhoods, we are afraid to go out at night. Is it any wonder that, when we go home at night, we try to draw the night about us like a cocoon?
How to form a community, then, is not a rhetorical question. It is the most urgent issue before us as consumer/survivors of the mental health system, and as residents of today's world. As mental health consumers, we need a safe haven among people who have shared similar experiences. Most of us know the terrible isolation of institutionalization and the shame of rejection by friends, family, and employers. These wounds and separations hurt so much, and sometimes last so long, that they are themselves what makes us sick and keeps us trapped and isolated.
Getting involved in the community of consumer/survivor/ex-patients can be the first step toward real recovery. Perhaps we do not realize how lucky we are to have this community, and how special it really is.
Consumer/Survivor Communities
The consumer/survivor community began 25 years ago with the anti-psychiatry movement. In the 1980's, ex-mental patients began to organize drop-in centers, artistic endeavors, and businesses. Now hundreds of such groups are flourishing throughout the country. Our conferences have been attended by thousands of people. More and more, consumers participate in the rest of the mental health system as members of policy-making boards and agencies.
For a person emerging from an institutionalization or an extreme mental state, the best place to seek community is in a peer support group with people whom we know and feel comfortable with. Such a group provides friendship, acceptance, and hope, and it becomes the foundation for our progress into recovery.
Peer support appears at first glance to be just another therapy group, but it differs in important ways. In a good peer support group, leadership is shared among members -- no one "plays professional." The emphasis in peer support is on listening rather than giving advice. At their best, our groups are similar to the consciousness raising groups that met in the early days of feminism. When members share feelings of hurt and humiliation, they often find that others have had similar experiences. This is an empowering discovery. Breaking the silence about indignities suffered in mental health treatment leads to a solidarity and a growing sense of community. It also leads to a mostly unspoken sharing of common values and beliefs.
In two such groups that I started, peer support opened up other possibilities. In Maine, the Portland Coalition for the Psychiatrically Labeled put together a slide show and traveled around the state presenting it to schools, other consumers, and mental health agencies. This raised the consciousness of many people and groups around the state, and it led to other projects, such as work for social change and funding for a drop-in center.
In New York, what started as a peer support group called PEOPLe led to an intensive program of peer advocacy with paid jobs for our members. Advocates from PEOPLe and other groups sparked major changes in programs and policies in New York State. In both PEOPLe and the Coalition, members who participated as volunteers or stipend workers eventually went on to finish college or get a fulltime job.
Often consumer/survivors are first introduced to the ex-patient community at a conference such as this one. It is invigorating to discover that we are in the midst of like-minded and friendly people who accept us as we are and not as how somebody else thinks we should be. Many of you here tonight will certainly come away from this conference with a sense of common ground, and with new friendships with people from all around Pennsylvania.
This August at the national Alternatives Conference, hundreds more consumer/survivors from all over the country will meet, and they, too, will find a new community which offers them acceptance and belonging. Feeling part of such a community empowers us to take charge of our own lives, and even to contribute to society. Other national organizations, such as the Support Coalition and Altered States of the Arts, offer ongoing contacts with our peers in other parts of the country. Such organizations provide the opportunity to make good use of our interests and talents, whether they lie in social change, community service, or the arts.
But there is an ugly side to the consumer/survivor community, one that has damaged many of its leaders and has ensured that we as a group continue to be ignored and trivialized among the general public. As long as we meet together for mutual support -- with a sense of fellowship and unconditional acceptance --consumer/survivors "make beautiful music together." The kind of respect and understanding generated through peer support can be a wonder to behold, more healing than years of medication and mental health treatment. We become empowered.
But, along with empowerment, come all the hazards of greed, ambition, and envy. It seems that whenever a consumer-run group achieves success -- and along with it, money -- the trouble begins. Members of a group, whether local or national, start fighting with each other. Although advocates often gain the power to change the system, they seldom gain the wisdom to turn their anger into compassion, their swords into plowshares. Years of hurt and rage bubble to the surface, and the result is that we hurt each other and turn what began as a model for community into a case study in betrayal. Instead of working for constructive changes in society, we fall into a rut of simply venting our anger and perpetuating our isolation.
This happened twice to me. At the Portland Coalition, members hired for jobs that we created became carried away with their newfound power. The community of friends that we called the Coalition fell victim to internal backbiting and backstabbing. At the same time, under pressure from government funders, the Coalition leaders became distracted from peer support, the activity that had made us a community in the first place. The community fell apart. It happened again at PEOPLe under almost identical circumstances -- jealousy and ambition among members, and pressure from government funders. I sometimes call this the "Gorbachov Syndrome." In organizations everywhere, it is common for the original leaders to be deposed by the very people they have brought together in a common vision.
So among consumer-run groups, there is a promise and even a realization of community, at a very basic level, through peer support. There exists a remarkable trust and affection among consumer/survivors -- a belonging and acceptance that, I am learning now, exists nowhere else. But somewhere along the way, this promise gets derailed.
Another sad commentary on our own lack of confidence is that, all too often, when mental health clients succeed in the world at work or at school, we discard our peer support along with our psychiatric label. We leave our community behind like another piece of bad baggage from the system we hated. Few of us realize how precious was the community that we found among our peers.
Virtual Communities
Within the last couple of years, the issue of madness as a spiritual event has begun to come out of the closet. Large numbers of consumer/survivors are beginning to talk about their spiritual experiences. The Spiritual Emergence Network conducts research on extreme mental states that are attempts at spiritual growth. There is a growing realization that consumer/survivors share a spiritual perspective that is important to our recovery. Not only that -- this perspective offers hope to people everywhere who want to make sense of spiritual turmoil. It is entirely possible that we who have experienced madness can help to develop this new and growing sense of spirituality for everyone.
The arena where this drama is being played out is Cyberspace. Among the hundreds of e-mail discussion groups called "mailing lists," several are becoming virtual communities where consumer/survivors who live miles apart find a forum for their thoughts and experiences. New and meaningful relationships are formed every day among people who have never met each other face to face. For example, I have been corresponding for some time with Bob Manrodt of Reading, and we are giving a workshop together tomorrow. Yet I only met Bob for the first time this morning!
The best of these consumer/survivor forums is called MADNESS. It was started about a year ago by Sylvia Caras, a consumer/survivor in California. The list has about 200 members, some of whom come and go. At one time or another, leading peer advocates from all parts of the country have logged on, as well as persons who have had no previous contact with the consumer community. MADNESS has become the de facto forum for the consumer/survivor movement; it could be called a moveable community. It has also become a place where madness and spirituality are frequently discussed, with more and more people finding the courage to bring their experiences out in the open.
Another list is Merton-c, with "c" standing for "community." This list is composed of people who are following the inspiration of Thomas Merton, the Trappist monk from Kentucky. Merton wrote:
A (person) cannot understand the true value of silence unless he has a real respect for the validity of language; for the reality which is expressible in language is found, face to face and without medium, in silence. Nor would we find this reality in itself, that is to say in its own silence, unless we were first brought there by language.
On the Merton list, I found an agreeable group of people from many spiritual traditions and lifestyles who share their views with tolerance and loving kindness. After a while, I described to them my experiences with madness and spirituality. To my surprise, my story was welcomed and supported. Not only that, many others on the list began to post about experiences with mental illness, including hospitalization. The issue is now discussed often. The Merton Online Community has become a place where genuine affection can be shared with a sense of trust and belonging. Its statement of purpose even sounds like the kind of philosophy that consumer/survivors have found so empowering within peer support groups:
We are here to support one another on our paths and that includes being able to listen to another's story without needing to fix anything or give advice. But advice and prayers may be asked for and given.
The Internet has made possible this opening to feelings and experiences that have in the past been kept hidden. On the Internet, one can be honest and open with less risk of retaliation and rejection. Cyberspace becomes a virtual community. Perhaps it is not quite the real thing, but the beauty of it is that such communities can be formed at all. It remains to be seen how well we can translate the spiritual realities that we find there to what we keep calling the "real world."
"The Real World" -- that term keeps coming up, as does the idea of a "larger community." But where is this real world? Where is there a real community?
Alternative Communities
Last year I came to work for Windhorse Associates, an alternative treatment program that bills itself as a "coalition of professionals, consumers, and family members." Windhorse is one of many partnerships that have recently been attempted between consumers and professionals in both the public and private mental health systems. The motivating principle behind Windhorse is learning to create an environment that promotes recovery and a happy life. The Windhorse environment is seen as a self-contained community that includes all staff and clients, and other associated people. All members of the community, including clients, live in private homes or apartments, and thus are also a part of the so-called "world at large," which in this case is the Pioneer Valley area of western Massachusetts.
The Windhorse community is fostered through frequent meetings, both formal and social. It is supported through contemplative practices and study among the staff. Team and staff meetings begin and end with a silent meditation. Each meeting includes a "check-in" from each individual that is similar to peer support meetings in which we go around the circle sharing personal comments and feelings.
This is admirable in theory; but in practice there are predictable glitches in the Windhorse method. It turns out that even in the best of circumstances, community is difficult to create and harder to maintain. Windhorse was founded on Buddhist principles and methods developed at The Naropa Institute in Boulder. Many of its original members now lead the Northampton program. But as new staff are hired, other perspectives appear, and shortcomings of the original structure become apparent. In Boulder, Windhorse did not include consumers as staff or board members. As the first consumer staff member in Northampton, I represent the peer advocacy end of the three-way coalition that Windhorse espouses.
Recently I startled my Windhorse colleagues when I began to insist that the consumer perspective be more than just words. I began to challenge policies that assumed that professionals, consumers, and family members could be absorbed into an homogenized reality identical to the old one. The problem is that the old Windhorse format did not allow consumer/survivors real input into programs and policies. Each client related to the community as a single person needing help from Windhorse professionals, and there was no opportunity for the clients to meet together for peer support and decisionmaking in the same way as does the staff in their various meetings. Within public mental health systems such as Pennsylvania and New York, the consumer/survivor movement has proved over and over again that our perspective is unique, and is necessary and valuable both to clients and to professionals. This message, apparently, has not yet reached the private sector.
The Windhorse approach has benefited its clients -- but it has not always empowered them. This conflict between established structure and the need for change is a predictable one, and probably inevitable in any community where growth and vitality seem to threaten what has worked in the past. This is the kind of conflict that we face everywhere today. Even a relatively enlightened community such as Windhorse remains isolated from the larger world when its inner reality no longer meshes with the needs of its members. The tendency is for the old community to exaggerate the values that used to work, and to fear and avoid the new ones.
We see this happening all around us in extreme right-wing groups, in cults and churches, and even in business. Politicians try to arbitrate old behaviors in a world where new ways refuse control. Religions promote superstition when new visions appear. Television becomes a frenzy of proliferating goods that consumers no long need.
There is a new wind blowing in the world, and it whispers to us that the time for community has come. We are frightened by this wind, for sometimes its whisper becomes a scream. The wind can be as loud as a hurricane and as penetrating as a tornado. We run for shelter to what used to be our communities, only to find that the rooms that once kept us safe are now only walls that keep us apart from each other.
We keep looking for the larger world. We want the larger world to take us in, and keep us warm, and make us safe. We want the world to be our community. We want it to be real.
Well, why not? It is not too much to ask, really. All we need to do is to look again at where we already find warmth and safety and acceptance.
Let us look again at peer support. In peer support, we learn to build the kind of community we all say that we want. In peer support, we as consumer/survivors have found a sense of community that many people in the so-called real world have never known.
We are people who have undergone fear and stigma, despair and oppression -- but we are also people who are learning how to open up to ourselves and to each other. We are learning how to overcome our own fears and how to find our own faiths. We are learning how to listen to each other.
This is the only way to build community, and this is where we start.