"I am now the most miserable man living. If what I felt were distributed to the whole human family there would not be one happy face on the earth. I must die or be better it appears to me. I awfully forbode I shall not.”
A working community assumes place. Location and space are the necessary prerequisites of an association where face-to-face collaboration among participants is paramount. John Beard [Fountian House Executive Director 1955 - 1981] intuitively understood the imperative of having a place of one’s own for his vision to materialize. Because the conditions he envisioned differed so radically from the culture and practices of the hospital ward with its fixation on illness, he located an empty storeroom in Eloise as a “place” where he and his patients were free to set up a social space that would relate to the healthy interests of his patients and enable him to pursue what amounted to a different role as therapist. Ultimately he knew that the hospital environment was limited. So when the opportunity presented itself to build his own program at Fountain House, he took it.
It is critically important to people suffering from mental illness to have a place for association in society (Carolan et al., 2011; Whitley, Strickler, & Drake, 2011). The notion of place holds an existential quality, such that the associations that occur within that space become rich in meaning and memory. Augé (1995) defined places as “relational, historical, concerned with identity” (p. 77). They are spaces filled with emotion and meaning. Place then represents a welcome harbor for a population whose place in society is filled with stigma and embarrassment. Since deinstitutionalization and the loss of a special place for people suffering from mental illnesses—however ill-conceived and experienced—Fountain House represents one such niche where they can anchor to find meaning and stability and foster relationships with others.
Place can also have a salutary effect upon people. In the words of Relph (1976), “A sense of place can sustain identity, provide connection to a personal and collective past thereby offering an emotional center which is rooted and anchored in meaning and value” (p. 141). In this way, place, with its bonds of emotional and social supports, provides a “pathway for negotiating the complexities of living” (Casey, 1997, p. 448). March et al. (2008), analyzing place and its association with the etiology of severe mental illness, consider place to function as a reservoir of risk or resilience: “As a reservoir, place consists of the natural and built environment, physical structures, and material resources that shape experience within a designated geographic location. The physical and social architecture of place both shapes and reflects relationships among individual inhabitants, social groups and social structures and institutions” (p. 96).
We agree that the social processes found in a place can be both protective and curative for those stricken with mental illness. And we intend to pursue this line of thought in further detail in the epilogue, considering how the place Fountain House as a practice and message of hope can provide clues that assist in the amelioration of the problems faced by people with severe mental illness in an era of deinstitutionalization.
Finally, control over space and time is essential in order to sustain the full effects of the Fountain House approach. We now know, after years of attempts to replicate the experience of Fountain House, that spatial independence is a necessary precondition for the working community model to reach its potential in meeting the recovery goals of its membership. It requires a space uninhibited by the rules and mores of a traditional mental health setting. It requires new roles for members and staff so that they can work together in a sympathetic environment. Specifically, such a place requires an independent board of directors at its core who will work to realize the Fountain House mission of member empowerment over the long term and promises that the effort spent on building the program will not be lost. In their own building with their own name, and with an unlimited future, independent working communities can foster a message of hope and demonstrate a sustainable approach to recovery.
Alan Doyle, Julius Lanoil, and Kenneth Dudek
Augé, M. (1995). Non-places: Introduction to an anthropology of supermodernity (J. Howe, Trans.). London: Verso.
Carolan, M., Onaga, E., Pernice-Duca, F., & Jimenez, T. (2011). A place to be: The role of clubhouses in facilitating social support. Psychiatric Rehabilitation Journal, 35(2), 125–132.
Casey, E. S. (1997). The fate of place: A philosophical history. Berkeley: University of California Press.
Relph, Edward. (1976). Place and placelessness. London: Pion.
Whitley, R., Strickler, D., & Drake, R. E. (2011). Recovery centers for people with severe mental illness: A survey of programs. Community Mental Health Journal, DOI: 10.1007/s10597–011–9427–4.
On Sunday, September 29, 60 Minutes aired a segment entitled “Untreated Mental Illness an Imminent Danger?” reported by Steve Kroft. The connection between mental illness and violence is a complex and fraught issue, not easily covered in 13 ½ minutes of primetime television, but the story did aptly describe failures in the mental health system.
Inadequate mental healthcare is responsible for untold human suffering – not only for the sensational mass shootings that prompted the segment, but for homelessness, incarceration, suicide, and countless lives of wasted potential. States are quick to cut their community mental health budgets, abandoning people who are living with serious mental illness to the Medicaid system – a medical plan that is woefully unable to meet their needs. Rather than the integrated psychiatric, medical, and social support that is proven to lead to better outcomes, many people are left to the revolving door of the justice, corrections, and hospital systems. Society pays the price, in real economic costs and in inestimable human costs.
The problem is easy to formulate, but what about the solution? In the present dialogue, it is easy to lose sight of the fact that there are responses in place to the mental health crisis that are working. Sunday’s segment neglected any mention of this, yet in almost 40 states there exist community mental health centers that help people with serious mental illness live productive, fulfilling lives. These centers often struggle for survival in the face of limited support and funding, but they are successfully addressing the problem. People’s concern and understanding of what is possible should be informed by that.
Everyone who weighs in on this issue agrees that ultimately we must expand mental health support services for people living with schizophrenia. My experience as the president and executive director of Fountain House, a world-renowned community mental health program, has taught me that these support services must have a few key features: Early intervention 50% of psychiatric illnesses manifest by the age of 14 and 75% manifest by the age of 24. Diagnosing and treating these disorders earlier means less time lost to the downward spiral of illness and the slow climb back to recovery.
Location Isolation is one of the single largest problems facing people living with serious mental illness today. Even someone who is in mental health treatment may dutifully take their medications, see their providers for a few hours a month, and have little else to fill their life. Frequently these conditions disrupt people’s lives – causing them to lose jobs, drop out of school, and alienate those around them. Discrimination, misunderstanding, and self-stigma only exacerbate that.
Centers in the community – physical locations where people congregate – can help those living with mental illness reconstruct their social networks and build the support that encourages them to move forward with their lives. Proactive outreach People living with serious mental illness are frequently difficult to engage, and mental health recovery is seldom straight line. Any number of things may deter people from seeking or connecting with available help – anxiety, medication changes, and lethargy, to name a few. A persistent outreach effort by a person or team aimed at building a genuine relationship with the recovering person is crucial.
Since 1948, Fountain House has been confronting the social challenges of mental illness and developing a response that includes these vital features. Fountain House serves New York City from its Hell’s Kitchen location, but the inherent humanity, social inclusivity, personal empowerment, and innovation of this approach has inspired its replication around the world and has earned federal recognition in the US as an evidence-based practice. It is the gold standard for community mental health programs, and it is the model for more than 200 programs in 38 states and another 100 programs internationally that successfully address the social impact of mental illness and support people to build meaningful lives in their communities.
Untreated mental illness is an imminent danger, but as the 60 Minutesreport rightly stated, very little of that danger is due to tragedies like the Navy Yard shooting. It is much easier to avert our eyes from the smaller daily tragedies of mentally ill individuals and their loved ones struggling to make their way in an inhospitable world with little or no help. But that help does exist. As a society, we must decide whether we will prioritize making it available to everyone who needs it.
Diffusion is essentially a social process through which people talking to people spread an innovation.
As an intervention in mental health practice, the idea of Fountain House represents all the right values. It is
And yet growth in the adoption of the model has remained stuck at the 300+ mark for over a decade now. Atul Gawande's article in the recent edition of the New Yorker magazine (July 29th) takes on this very problem. He asks why does one innovation in medical practice spread while another languishes, even though they both achieve obvious improvements in healthcare. His solution is that change in practice requires the intervention of coaches who establish personal trusting relationships. "People talking to people is still how the world's standards change," he asserts.
This is exactly what Fountain House did in the 1980's and 1990's to spread its message of hope and humanity in mental health. The training system included the formation of a Faculty for Clubhouse Development, its "university without walls" as Propst (1998) once described it. As a result, Fountain House as an innovation in mental health practice enjoyed an early dramatic worldwide spread.
Gawande is clear about the impact such an approach would have in health care. In order to achieve a system where people routinely are doing X or Y when they are not being watched, he suggested this regimen:
a list of clear practices
regular visits by a personable coach—a decidedly non judgmental approach— that replicates the highly successful seven-visit practice of pharmaceutical salesmen.
In other words, Gawande argues that we approach the diffusion of innovations in institutional healthcare in the same way clubhouses promote the recovery of individual members - through the personal intervention of trusted, nonjudgmental staff coaches. I suggest that what we know to be proven and effective in member recovery can apply equally as well to stimulate institutional growth and expansion—the marketing of the Fountain House brand should be fundamentally based on human agency of motivational coaches. This is the same broad mobilization technique Gawande posits that society has employed to address illiteracy (a public school teaching profession), pain in surgery (anesthesiologists), and agriculture (the extension agent system).
We have standing ready a cadre of capable, clubhouse members who can participate, even lead, in a movement to expand decent community-based support in mental health recovery. In my next article, I will outline what such a system would look like.
Alan Doyle, EdD Director of Education, Fountain House
Gawande, A. (2013). "Slow Ideas," The New Yorker, July 29, 2013, 36-45.
Propst, R.,(1997), Stages in realizing the international diffusion of a single way of working: The clubhouse model. New Directions for Mental Health Services, 74, 53–66. doi: 10.1002/yd.2330227407.
Note: This is the first in a series of articles on promoting growth in the replication of the working community model of psychiatric recovery pioneered by Fountain House.
To make art requires material, expertise, patience and a place to work. None of the ingredients are inexpensive. I’m interested in becoming an art therapist. However, in the least pricy program available in New York City each book runs me about $125 and each piece of art costs at least $250 to make from start to finish. It’s very expensive. It’s too expensive even for full federal and state grants and the little money I get from social security disability to cover the costs of supplies and books.
Luckily there are still ways of getting the help I need to make it through school without incurring serious debt. One of those ways is the Fountain House Scholarship. Every semester for the past two years, I have been taking two art classes and two psychology classes. Applying to the Fountain House Scholarship has allowed me to pay for materials and books needed for my classes on time. I don’t have to worry about waiting until my Tuition Assistance Program (TAP) payment comes through, usually weeks after school starts, to have enough money for all the startup costs. And I get to save my TAP monies for all the projects later in the semester, which normally cost me more because they are the finals I need to do the best on.
Now you may think it’s hard to go to school, and that is true. You may also think it’s hard to apply for the Fountain House Scholarship and go before the review committee, but that is false. School is work. It’s hard, sometimes I want to give up, but I fight through. There are assignments to finish, papers to write, tests to take. It is a full-time job – even when attending college part time. However, the Scholarship application is easy. Name, address, worker, what do you want to take; write a short essay; provide a printout of the class you want to take and you’re done! The interview is easy, too: go before a group of about five people - fellow members, board members, administrators - and talk about what you want to do.
Here’s the hard part of the Scholarship: George Handran, the man responsible for the Sidney R. Baer, Jr. Foundation, who ensures we get our scholarships each year, thanks me for being there. He thanks me for giving me money to go to school by which he can honor Mr. Baer’s legacy. And every time I tear up, and in that moment I know that I have to do my best because Mr. Baer didn’t have the same chances and because I want to set an example for my fellow members. Because someone believes in me enough to hand me $500 to work towards my goals – the ones that doctors told me I was never going to achieve.
This last semester I didn’t think I would make it. It was the first time I had gotten seriously depressed since 2008. A series of deaths in the family, friends getting ill, and my own medical issues overwhelmed me to the point where I was unable to concentrate. My ability to sit in class dwindled and I felt the need to do something to show how low I was. It was at the moment I began to step into a pond at Central Park that I knew I needed help. So I reached out. I contacted the counseling office at school, spoke to my Accessibility adviser, saw my psychiatrist (my medication levels were dangerously low because I wasn’t taking them properly), and met with my worker at Fountain House. This is the first time I’ve been depressed and in college when I’ve had support.
Support doesn’t mean everything was done for me. I still had the autonomy to choose how to get help, but this time I also had people behind me to help me get to my goals. And because I had planned for the return of depression or mania, I had options to choose from. My goals were to save my grades from the havoc that depression wreaks. I spoke with my advisor, and I decided to take incompletes in my sculpture and statistics classes because they required a lot of physical or mental work. I kept taking the two psychology classes because they only required memorization; no projects, papers or heavy physical work. My condition had been documented, so I could do this with no penalty.
This semester I will finish those two classes because I am starting to feel better, and I won’t be getting F’s like I did back in 2002 when I didn’t have the support I do now.
The real lesson is that success is based on what my own idea of success is. For me, it’s getting the best education I can with consideration to my health and well-being. To be true to myself and admit when I need help or need to take some time off. And to know that the entire Fountain House community will be behind me the whole way, no matter what, to help me do my best. The best part of all is that I know George and the rest of the committee will be in that room, year after year, semester after semester, thanking each one of the Fountain House Scholarship applicants for their courage, their hard work, their will to go on, and their ability to give back to the community.