I must respond to the charges made by Sally Satel, M.D. in a recent book entitled PC M.D.: How Political Correctness Is Corrupting Medicine. In the chapter entitled "Inmates Take Over the Asylum," she identifies individuals in the present peer/consumer movement within the mental health system as "radical consumer-survivors" whose main objective is to subvert a mental health system that they find oppressive and destructive in nature. I have served for many years as chairperson of the Mental Health Committee and Community Services Board that advises the

Commissioner of Mental Health in Erie County, New York. My experience in working with peers/consumers to plan and develop services is very different from what Dr. Satel reports.

A great deal of her criticism is aimed at consumers/peers who lobbied against involuntary outpatient treatment. She claims that they have been doing everything in their power to subvert all implementation of that program. I can speak from firsthand experience that Satel’s claims are not accurate. It is true that prior to the passing of Kendra’s Law in New York State there was a great deal of debate. Some consumers/peers opposed the law as it was proposed for fear that it could easily put individuals with a mental illness at risk for court action just because someone deemed them a nuisance. However, many of the consumers/peers with whom I had contact would accept a law that was less sweeping in nature, one focused on a small cohort of individuals who had shown themselves dangerous, one protective of individual rights.

The general focus was that increased services were more important than any law. I found this debate healthy. It resulted in bringing about a significant increase in the availability of community support services once the law was passed. I also know that once the assisted outpatient treatment law was passed, the consumers/peers in Erie County worked not to subvert it, but to make it work in a manner that would be of most benefit to those individuals who are most at risk and in need of special services. I remember the meeting at which consumer/peers, family members, community representatives, providers and government representatives reached a

consensus that contributed to how Erie County implemented its program. Consumers/peers involved in the discussions agreed to support the program so long as the emphasis would be placed not on the legalities of court action, but on the availability of more user-friendly and

client-centered services within the community. During the past two years, several hundred individuals have been successfully engaged in needed services, while less than 10 percent have had any court involvement. If the program is working, it is because consumers/peers who participated in the planning process sought not to subvert it but to help develop a truly client-centered approach that would work.

Unfortunately, Dr. Satel holds this client-centered approach against the consumer movement. I find that disturbing. How can we condemn a movement for pressing us to tailor our system of care so that it better meets the specific needs of those individuals it is meant to serve? I

do not think it is out of political correctness, but simply out of understanding the essential meaning of care that we would seek to implement a client-centered approach to treatment, especially for those who have traditionally not been linked and thus are most at risk. The several teams of care coordinators that Erie County has put in place are working so well that there are plans to expand them, this not in spite of, but because of and with peer/consumer involvement.

Dr. Satel criticizes those who make funding available for peers/consumers to work within the system of care. Erie County pleads guilty to this charge. However, our experience is that there has been an immense benefit from the way in which peers/consumers work as an integral part of the service delivery system. Every care coordinating team and transitional case management team has peers on its staff. We welcome peer participation in the delivery system to provide what they are uniquely qualified and capable of offering. They do not thwart treatment, but enhance it. How can Dr. Satel not understand that certain individuals with a mental health disability might be able to identify better with someone who "has been there and understands?" While this should not represent the full extent of treatment, it has shown itself to be an important component of service. Some individuals are more receptive to the outreaching hand of a peer. A sense of trust can begin to build. It is our experience that individuals who previously had dismissed help are beginning to be more receptive. Peers/Consumers have not "taken over the asylum" but have helped implement a system of care that many individuals with a mental illness find truly caring.

One very disturbing charge Dr. Satel makes is that peer/consumer advocates are themselves too well-functioning to represent the majority of individuals with a real mental illness. Does that not suggest that the possibility of recovery is not real? Does it not identify being dysfunctional as an essential ingredient of having a mental illness? Does that not betray a bias of stigma? Many individuals active in the consumer/peer movement are quite functional. Indeed, they need to be to confront what is often a bureaucratic maze, as well as to respond to claims made by individuals such as Dr. Satel. However, their ability to function should be something to celebrate, not condemn. Many of the peers/consumers I have been working with over the years have experienced times of devastating dysfunction in their lives. Should we condemn them because they managed to work through it, and with help gain recovery? What a wonderful example to those who are still trapped in dysfunction. Who better to help us understand how to reach out to those latter individuals and initiate healing? Who better to offer the glimmer of hope that those who are trapped in their dysfunction are not condemned by their illness to remain dysfunctional. Furthermore, if hundreds of individuals who have had a mental illness have been assisted in finding employment in Erie County, it was peers/consumer advocates who pressed for services that would support this possibility.

Dr. Satel further criticizes peers/consumers for believing that most individuals with a mental illness can live healthy lives within the community. She claims that half the individuals with schizophrenia are too sick to even know they are sick and therefore incapable of living well in the community. Not only is that a generalization, I would seriously question its accuracy. Undoubtedly, there are individuals whose illness is so gripping that they likely need a confined residential setting, at least for a time. However, they do not represent the majority. There are hundreds of individuals in Erie County who, with a package of supports, have managed to live quite well within the community, many in scattered site apartments. The consumer/peer advocates encouraged this development, not as a way to eliminate the availability of more restrictive residential settings, but to help us understand that community living with proper supports is a viable option for more individuals than we realize.

The majority of traditional providers of services in Erie County do not find the peer-consumer movement to be an enemy of the service delivery system. For almost five years, in what is referred to as the Partnership, the executive directors of several traditional agencies meet with representatives of peer/consumer groups to discuss and plan how they can work together to improve the system of care. Traditional agencies not only welcome peers into their operations, but utilize their involvement to improve the way they deliver services and treatment. Many

positive improvements have come out of these discussions. I do not suggest everything is perfect in Erie County, or that we are experiencing a love-fest of agreement between consumers/peers and the rest of the system. If that were the case, something would really be wrong. However, I believe that even consumers/peers who take a more critical approach are part of the healthy mix of a viable system. When Dr. Satel refers to the consumers/peers as ideologues, I suspect she is reacting to those who dare to question the authoritative position to which she feels entitled, one we too readily have allotted to professionals, especially physicians. She ends her chapter suggesting that supporting consumer/peer activities "has had disastrous consequences for people with severe psychiatric illness." That statement must be challenged. It is my experience that the involvement of peers/consumers has contributed greatly to helping us develop a better system of care. I speak not merely for myself, but for a very large number of individuals at every level who are committed to the possibilities of rehabilitation and recovery for individuals struggling with a mental illness. I see this not as an ideology, but as an example of hope and faith in the healing power of the human spirit.