Eight years ago when I read about the Hearing Voices Network in Europe, I thought it was a dream. There seemed to be no better way to challenge the mainstream myths that psychiatry promotes. I wanted to make it come true but I didn’t know anybody. Bearing a very contained two and a half year history of madness, I did what I could: I started a professional group in the outpatient program I worked in in St Louis Missouri called Special Messages. Now that the Hearing Voices Network is becoming a local reality, I am excited. However, there are a few things I have learned from my work with Special Messages in St. Louis over the last eight years that I hope might contribute to the vision of making self-help widely available those who have experienced “psychosis.”
My Journey Creating the Special Messages Group Therapy Curriculum:
When I started the Special Messages group, I had just become blessed with a forty hour a week schedule for the first time since I got dropped off at a Greyhound Bus Station from out of the State Hospital seven years prior. With four thousand dollars in the inseam of my jean, and the tendency to look back over my shoulder, I had to work a lot more than forty hours a week to stay housed, off social security, and out of dilapidated barracks.
Finally, I attained my license in 2008. With a sudden new allotment of time, I searched the internet. I discovered the work of National Empowerment Center and Patricia Deegan. Additionally a site called Successful Schizophrenia, administered by Al Siebret, really helped motivate me. I also started the process of getting trained as a WRAP Facilitator. In my free time, I started the writing of my story in memoir form. I didn’t know anybody in the movement and the one book I sent away for that was about the Hearing Voices Network, never arrived.
In general, the people who helped me create the Special Messages group and curriculum during this time were not very different from me. Whereas I was so privileged as to have had four thousand dollars, a Master’s Degree, and a career in Mental Health to return to when I was released from the hospital, most of them had experienced a sense of social decline, living in oppressive circumstances after a string of hospitalization recidivism. They were fighting enough meaninglessness so as to agree to volunteer their time in a wellness community while I got paid.
I initiated my own deconstructed view of what “psychosis” was and they used it to share their silenced stories and give me feedback. The deconstruction platform also gave me the opportunity to teach social rehabilitation and recovery in ways that helped some get on up out of those white-walled corridors.
I structured the groups in sixteen week segments and re-drafted a curriculum after each run through collecting feedback from participants that greatly changed the intention and focus of what I was doing. Presently, I became focused not on deconstructing the mainstream paradigm, but reconstructing a new definition of what was going on that could help individuals pay more attention to their internal process and the ways that they are both similar and different from the experiences of others. What has developed was a safe place where people could use similarities to become part of a sub culture and differences to learn new ways of seeing things.
I have come to believe that with encouragement, but at their own will, participants can increase flexibility and cultural awareness to learn new skills to enhance their experience of recovery. For some this may include the telling of their story; for others listening and learning; and still others, a sense of being mentors.
Ultimately, having a home base enables individuals to explore entering the hostile community and engage in healthy social integration activities that ultimately can decrease loneliness and suffering. Replacing isolation with meaning and purpose in this manner can also involve learning to run these kinds of groups.
With this reconstructed view of “psychosis” I have been able to greatly improve my work with individuals. I have been able to develop many techniques that help move individuals forward in terms of individual work in treatment planning.
My Own Process of Researching:
I have recently completed an eighteen-month research grant that focused on using my curriculum to implement a training program. The goal was to create peer counselors that could learn to be open with their message process and create local groups that could attract large numbers of participants. Because I needed to maintain employment during this process and wanted to give myself and others a rich learning experience, I utilized a skilled Program Manager to run the grant program and did what I could to support the experience and write about it.
By the time I got awarded this grant, I had become so disenfranchised by the evidence based practice movement that I did not want to work under what I consider to be its illusions. Thus, I did not believe that I could come out with evidence that could universally be applied to other regions. I wanted to curb the experience to impact the urban catchment area where many of the individuals who helped me create the curriculum dwell. My feeling was that in addition to starting up groups, we could create a case for creating positions on service teams with individuals who have lived experience with “psychosis.” I had, in the meantime, done enough work managing peer counselors to feel that we could use this model to transform the local system to be friendlier to our culture and hire specialists onto service teams.
While I was admittedly not really in a position as a part-time manager, an accommodating, therapy-focused character, and an overcommitted author with a memoir contract that was to collapse, to control what transpired, I did the best I could to track it. The project was a huge success, though a difficult personal endeavor for me due to my sense of being over-committed.
What we found was that we did not attract as many voluntary participants who were able to overcome homeless-vagrancy and transportation issues to make it into group. In other words, our widely dispersed flyers brought us only a few individuals who we used to train our workers in individual treatment strategies. However, this was a great way to get the buzz starting for treatment into encampments and homeless shelters. With the leadership of our program manager, we took our presentations at agencies and conferences gained us access to conduct groups at established agencies. The, we were able to take our groups into agencies and reach a large number of individuals with collaborative and effective groups. While we made efforts to measure our success via surveys, the majority of the participants (which included providers and family members,) were much more willing to welcome the work than were willing to complete the survey. The number of people served was very high. We received a great deal of support and positive testimonies. Our workers also made significant career gains and personal growth.
Interactions with the Local Hearing Voices Movement:
Just before I obtained the before mentioned grant for the Special Messages Project, a local effort to successfully bring the Hearing Voices Network into the Metropolitan Area was successfully spear-headed. I was very pleased that our project was able to collaborate freely in a very collaborative manner with this effort. I was able to send our workers to an HVN training, a training that sadly, I was too busy to attend. And some of the leaders from the movement came in and participated in our efforts to train our staff. Together we went through the curriculum normalizing the process of talking about voices and other alternative states. I was extremely impressed by the fact that none of us were territorial and I even got help with the research end of my grant and program evaluation from leaders.
Prior to receiving the grant, I was privileged enough to attend one Hearing Voices Network training. What transpired was ultimately very valuable. Ultimately, I learned that leading a community support group amid the unfiltered public and a professional one like the one I do are different. I learned that I, amid institutional circumstances was able to be far more inclusive and less powerful.
As I listened to the training on that day, I felt threatened as though I was being told that the therapy that I have developed and the role of the therapist that I have constructed for myself with success in the program in which I operate, would not work. I left the training broken-hearted and feeling that void of self-doubt. Indeed, although being challenged in this way would prove to be extraordinarily helpful to me in the long run, I felt alienated.
I went on to maintain the role of the therapist that I had developed in the outpatient program. I kept the group safe by staffing my training with those I was paying. In other words, half of the training group was paid and already knew the material. They used the opportunity to practice opening up and sharing to help teach the material to the individuals who came to volunteer their time.
But the training I had with the HVN had taught me a lot about the heightened demands that are required for facilitation outside the realm of an institutional structure. Indeed, with other therapists available and a medical model structure, I have been able to develop a style that isn’t necessarily possible in an open community support group. Now that the grant is over, and I continue running the training alone, I am being faced with some of those same issues that the Hearing Voices Facilitator said I would. It is forcing me to adapt differing interventions and though I still insist on being inclusive I am grateful for the learning I have done and the connection to the Hearing Voices Network.
Contributions to the Movement that I Failed to Make:
In the middle of the grant I was afforded the opportunity to sit on the board of the Hearing Voices Network U.S.A. as it was formulating and getting up and running. Listening in on a few conference calls and reading the charter that was initiated, I again was struck with that same sense of painful alienation that I was during my first HVN training experience.
As I learned that some members of the group aimed to duplicate the academic work that had been initiated in places like the UK and Australia and New Zealand, and import them. I realized that being an alien voice amidst this group was going to be an uphill battle that I didn’t have time for. While I am well aware that these issues of class, race, gender, and regional issues have been managed by the movement in ways that I have not researched or read about, I realized that I was too overloaded to figure this one out.
Indeed, some email contact I have had with the movement has challenged me. My efforts have been cast by some as not fitting the mold with the HVN because I have chosen to work within the system. Skeptics have been concerned that my groups may not be voluntary. While, my groups have always been built on voluntary participation, this criticism helps me suspect that different facilitators have different target audiences. My groups are dealing with individuals who are facing large institutional obstacles. I also have a luxury of being very inclusive because within the structure of the program unsafe group interactions are contained by a team that addresses unsafe behavior and boundary testing. I can also cross many cultural divides.
Still, as I am prone to argue with Evidence-Based-Practice, I would assert that foreign research cannot easily be translated to an entirely different social system. For example, I have learned that houses are available to everyone in New Zealand with the social democracy they have there. Though they have the same institutional board and care homes for some, getting voluntary treatment enables many to work towards living independently and housing is a realistic expectation. The St Louis system of care, it is vastly different. There is more likely to be a significant period of homelessness that adds institutional layers to some individuals’ lives. Getting an apartment in a city like St. Louis, one may have to wait forty years for senior housing, or, if one doesn’t get lucky, with Section 8, a benefit that is getting increasingly ghettoized with the local rendition of the national housing crisis.
While some might argue the merits of independent support groups, I feel there is a way to build a space for them in a system that is voluntary. I continue to think it is extremely important to fit the approach to the region instead of fitting the region to the approach.
Acknowledging Socio-Cultural Issues and Regional Diversity when Challenging Mainstream Psychiatry:
In the outpatient program that I work in in St. Louis, I would not dare to sell the foreign HVN concept to the communities of color that I work with. Once again superior European research would be initiated into their community. This concept already alienates me and I know it may even be worse amid many of the people I work with. Even many of us minority white people in the urban institution in which I work might take offense to some of those academic presumptions. Growing up I spent a lot of time finding desperately needed acceptance in communities of color and so do many others like me. Europe isn’t always the boat that our community members want to swim on.
Personally, I like the idea that people in different communities create different solutions for different circumstances. The economy of a Midwestern college town is vastly different than the economy of an urban ghetto. In spite of bias laws, each economy has merit and deserves respect. Each community requires different types of mental health warriors. Just as AA adjusts its leadership to all kinds of diverse communities, so too can the Hearing Voices Network. And I believe that the HVN movement contains in it the potential to add therapeutic treatment component to the psychiatric paradigm that can radically change things in St. Louis and across the nation if it is managed with cultural sensitivity. Indeed cutting through the self-stigma and institutional abuse that result from hospital recidivism takes some time in St. Louis. I believe that changing this phenomenon may require using some institutions.