The following was originally presented as a speech during a site visit by the Conrad N. Hilton Foundation.
Often pivotal moments in life are fleeting - there is often only unconscious awareness of them. The people in life who guide and focus us may be unrecognizable until much later. Today is a special occasion, one in which I get to thank those, recognize those who have been integral in my blossoming as a human being, a woman, a struggling person with a disability.
The organization that I am part of - that I give to of my mind, my work, my guidance - is being considered for the Hilton Humanitarian Prize, the Nobel Peace Prize of humanitarianism. This award has traditionally been given to doctors, practitioners, teachers - all from organizations that maintain a hierarchical structure from which they help those they deem needy or where people needing help come for a short time of need. Fountain House operates differently.
Mental illness that is severe and persistent disables people on multiple levels - making it an all encompassing illness and one in which traditional timed recovery plans are not useful - in fact they can be detrimental.
Mental illness disables people by presenting in full acute states, say during a delusional or major depressive episode. It devalues people as contributing members of society through stigma and dismantles social structures such as family, jobs, school because reasonable accommodations and education are not presented to families and employers/employees.
For instance, it is not common knowledge that someone coming out of a manic episode will need anywhere from 4-9 months of recovery time before resuming the same activities as before the break. Jobs do not accommodate based on what a person’s current functional needs and limits are, rather people are let go when they cannot perform at the highest level of functioning consistently.
My job, in supporting our organization for this prestigious award, is not just to talk about stigma, but to focus on my story and how Fountain House has made the difference in my life. This is a list I compiled to make sure I don’t miss any points:
1.Four years ago I was working full time while living in hostels and on the subway.
2.I was planning to end my life.
3.I made a promise to do anything and everything I could to help myself in return for guidance.
4.A friend gave me a tour of Fountain House.
5.After joining I had immediate usefulness every day, no matter how little or how much I could do.
6.I achieved stability: I attended doctor visits and support groups. I joined activities, showed and sold artwork through Fountain Gallery, and worked on High Point Farm.
7.I began to blossom: I became a group facilitator, went back to school, graduated with my Associates Degree with honors, mentored others with mental illness, advocated on behalf of Fountain House, and increased my artistic output.
8.I developed new dreams: to become an art therapist, to start a Fountain House-model program in Buffalo, to get married and have kids
9.I still have issues and recently have had a lot of setbacks: family deaths, surgery, insurance issues, college applications, stress, mood problems
10. But Fountain House is always there for me, no matter what. I always have a second home, help, and people who know what it is like and who love me for who I am.
I want to convey that clubhouses save lives, both literally and figuratively. They prevent suicide while also creating a space for personal, professional, academic, and familial growth.
Suicide is not something that happens in the laboratory of someone’s mind. What I hear too often from family and friends of people who are dealing with depression or suicidal ideation is “Just remember people care about you.” It’s as if they think that a person’s issues are tied to that alone - and that arguing rationally with a mind that has taken on irrationality is the right way to go about helping someone.
Suicide is not a response to the attitudes of the people who care about you; it is a reaction to harshness of the greater world and the collective human consciousness. That’s why people who are bullied, ostracized, minimized, and abused commit suicide. All the above render us powerless over our own situations, our outlook on the world and ourselves, causing ruminations which lead to an intense need for escape.
These actions, of other people towards us, change our brain chemistry. They change the way we perceive and interact with the world. Depression, anxiety, bipolar disorder, and schizophrenia also change our brain chemistry, and the combination of neglect or abuse coupled with mental illness can be deadly for this reason. Add the stigma of mental illness (which functions much like societal shunning), and you have a triple threat capable of dismantling even the most stable minds.
What Fountain House does is build a cocoon of safety, removing the stigma and the incidence of neglect/abuse. People who have our best interests and the best interests of the world run Fountain House, but we, as members, decide how it is run in conjunction with staff. It removes the bureaucratic apathy so easily found in our governmental institutions and clinics.
The space itself becomes good, pleasing, malleable to our functional level. The abuse, ignorance, shame, anger, distrust, humiliation that has been hurled at us from those entrusted to keep us safe – our peers and our world - has no place to breath inside these walls; it has no place somewhere you can plant a flower or file a piece of paper or cook lunch or teach a class or run a program or just sit and wait for energy.
At Fountain House, we can be ourselves, free of people saying “If you just do something you’ll feel better!” and instead saying “Hey, can you give me a hand with this?”
What happens then, when you realize that nothing you can do can destabilize this place - where no one will be disappointed with you for being you - is astonishing. The blossoming and growth of a person, once nearly drown by the world, takes place. Dreams come true. I’ve seen people walk through those doors who’ve never had a job before - they were told they never would by parents and teachers - get an employment opportunity in which they work a low stress job for 6 months. Their confidence increases, and they apply for another and eventually get hired permanently. After a ten-year hiatus from school, I went back only after I saw others like myself do so. We inspire each other, teach each other the ropes.
In this way Fountain House saves lives: by providing a place we can grow from the small lives we are allowed to live when deemed sick or unworthy or damaged, to the large lives we get to claim as our own - and live how we want.
With almost 35,000 officers patrolling the streets daily, the New York City Police Department is the largest and most sophisticated law enforcement agency in the world. Given NYC’s growing mental health population, it's inevitable that at some point the paths of an NYPD officer and a person living with mental illness will cross. The NYPD often does a good job keeping us safe, but with only 6 months at the police academy and a few short days of diversity training, it’s evident that not all the City’s various populations garner the respect they deserve. One of the most neglected groups is those living with mental illness.
There have recently been several unfortunate interactions between the NYPD and some Fountain House members, so the advocacy committee has sprung into action in an attempt to deal with these problems. Although it’s possible to point fingers and place blame all day long, the committee felt that working with – not against - the department would be the best way to prevent future issues. The advocacy committee has come up with a two-pronged plan that we hope will help minimize the interaction between those in our community and the NYPD.
Once upon a time, a group of Fountain House members and staff helped the NYPD train supervisors to deal with people living with mental illness. The training may not have been as intricate or in-depth as we would’ve liked, but it was a start to building an effective bridge. Seeing how this program was discontinued, we needed to come up with a different approach, and we figured the best place to start was here at Fountain House.
The advocacy committee put together a series of workshops to educate our members on many of the things that make an encounter with the police either smooth and orderly or rough and uncomfortable. The presentation, led by Joe McWalters, Dice Cooper and me, set out to inform members about what types of identification they should be carrying, the rights they have when stopped by the police, and how they should react when approached. The first phase of our presentation was extremely successful and very interactive. People shared their firsthand experience and asked a lot of questions.
The second phase of our presentation, which is still in the works, will be a role-playing class that allows members to practice how to act and what to do if and when they are stopped by the police.
We also want to develop an educational program for the NYPD – this time not just for supervisors but for the officers as well. Ideally, we’d facilitate a week’s worth of classes for officers while they were still in the academy. This is a tough ask, but we’ve come up with a list of chiefs and commissioners to whom we will be sending letters in hopes of developing long-lasting and successful relationships.
In this media age, we’re often quick to criticize the actions of the police. There’s no question that some stories we hear in regard to police misconduct are true, but the overall success of the department cannot be denied. Officers undergo rigorous training, but they clearly need more preparation to deal effectively with the mental health community. The department labels someone living with a mental illness as an “emotionally disturbed person,” but we at Fountain House know they are much more. They are individuals who, like everyone else, deserve to be treated fairly and respectfully.
Freddy Morello Employment Unit and Advocacy Committee, Fountain House
At Fountain House, we are constantly improving our working community approach by tackling some of the most intractable challenges in mental health. Over the years, we’ve made concerted efforts to address the specific challenges that young adults who are living with mental illness experience, but it’s proven to be a knotty problem. Why do they continue to fall through the cracks? How can we better reach them? What obstacles do they typically face? And what kinds of resources do they need?
Most young people don’t get the mental health support they need to move forward with their lives. Often, they age out of mental healthcare programs available to children and lack the necessary resources to access mental healthcare programs for adults. Considering that many mental illnesses first take hold during adolescence and early adulthood, a tremendous opportunity exists to intervene in the initial stages, potentially saving people years of disruption and struggle.
We reached out and surveyed the hundreds of young people who had come through our green doors in the past several years – those who stayed and become part of the Fountain House community, as well as those who drifted away. We compiled the data, and for months, members and staff in our Wellness Unit discussed and debated how to make our community more responsive to young adults. Eventually we developed UNITY – Understanding, Networking, and Integrating Transitional Youth.
UNITY offers young adults, ages 16 – 25, socialization, one-on-one mentoring, and help connecting to resources and programs in the community. The application process is simplified and streamlined, and entry is immediate. Participants meet weekly for eight weeks.
“We found that many young people in this age range needed answers more than anything else,” says Fountain House social worker and UNITY co-leader, Joe Shaffer. “They may be coming to understand the impact and permanence of their mental health diagnosis on their daily lives and looking to see what help and resources are available. Or they may be simply looking for a community of people in similar situations, willing and able to dialog about what it all means."
UNITY meets at 5:30 on Monday evenings in the Fountain House Wellness Kitchen, where the group begins by preparing and eating a meal together. This collaborative project eases them into the more serious work ahead and lets participants, member/mentors, and staff leaders get comfortable with one another before opening up about complex personal matters.
On one level, UNITY is an intake group that gives young people a chance to learn about Fountain House and whether full membership is right for them. On another level, it’s a problem-solving forum where young people can get help with everything from homelessness and public benefits red tape, to confirming their diagnoses and treatment options, to pursuing a GED.
In its first eight months, the UNITY program has drawn 40 participants, many referred by homeless shelters and inpatient mental health facilities. Here are some of the challenges and goals they brought with them: Challenges
Denial of public benefits
Lack of friends and network
Confusion about how long-term mental illness will affect their lives
Earn a high school diploma or college degree
Find suitable employment
Find trustworthy confidants
One of the most unique components – and biggest successes – of UNITY has been the dedication of our member-mentors. It’s a meaningful way for current members to discover that their knowledge and experience has value, that their time and advice can benefit others, and that they possess the ability, perspective, and empathy to be trusted advisers to people at their most vulnerable. UNITY has enhanced their own sense of self and helped them to stay on the path to mental health.
One mentor, Ashley, remarks, “I feel more responsible about being here on Monday than just about anything else in my life right now. It’s the first commitment I’ve had in years. Since I’ve been keeping it, I’ve been able to add others. Sometimes it’s just easier to show up for someone else than for yourself, you know?”
The UNITY Project has been a remarkable pilot project, and our goal for the future is continued growth. We know the need is there. With the right resources, we can reach more and more young people before they slip through the cracks.
Kate Moyer Wellness Unit and UNITY Co-Leader, Fountain House
Shakespeare said, “All the world's a stage, and all the men and women merely players.” From October 4-7, 2012, the theme of the Performing the World 2012 conference was “Can performance SAVE the world?” Hosted by the All Stars Project and the East Side Institute for Group and Short Term Psychotherapy, performers, social workers, therapists, cultural workers, and other professionals from 37 countries answered the question in a series of workshops that ran the spectrum from “Mad World: Voices from Middle School,” to “The Role of the Play in Human Creativity and Development: Lagos State University Theatre Arts Experience,” to “Training Convicts to Be Community Based Theatre Facilitators as a Means to Reintegration in the Community.”
On Friday, October 5th, Jeff Aron, Director of External Affairs; Alan Doyle, Director of Education; Susan McKeown, a Dublin-born, singer/songwriter/Grammy winner; and I offered a panel titled, “Clubs, Communities, Culture: Creating Our Response to Mental Illness.” Our panel addressed the issue of how community and creativity can change the meaning and experience of mental illness.
Susan’s song, “Good Old World Blues,” (poetry by Hayden Carruth) from her latest CD, Singing In The Dark was playing in the background as interested parties entered the room. Jeff, who facilitated our panel, opened the discussion by talking about what is community and creativity and how each played a role in the day-to-day life of those who come to Fountain House. Alan expounded on this theme in a personal way by asking himself, “Am I only an actor at Fountain House during office hours who went off-stage when it was time for him to go home at the end of the day, or am I a permanent cast member in the play that is mental illness?”
This was my second time being on a panel with Jeff in Performing the World, and each time I’ve written a special prose poem for the event; this year I wrote a poem entitled “In My ‘Hood”, which goes, in part, like this:
I’ll soon be back to hanging doll body parts from shadowboxes. As if I could ever leave. As if the world could keep on surviving with less art when what it really needed was more. An act of art created the world, it would take many more to keep it spinning on its head.
Susan spoke last, about how, for her latest CD, she’d set poems that famous poets had written about mental illness to music. The songs are haunting, but Susan gives them voice that resonates with possible salvation.
Following our discussion, the floor was opened to the audience. Many people spoke of how they used creativity in their organizations or how they saw creativity could be used. I was much impressed with Alan’s introspection as it is always interesting to me how those who don’t live with a mental disorder find common ground with people who do.
Jeff is always erudite about creativity and Fountain House, and how the two are perfect partners when it comes to the rhythm of the mind. I’m always thrilled with meeting my creative national and international brothers and sisters, and learning new ways of doing cultural and mental health work that does not necessarily involve medication as an intervention.
Davida Adedjouma, LMSW Education Unit and Board of Directors, Fountain House
In 2009, I was asked to transform Club 57, a locked day treatment program for both in and outpatients from Rockland Psychiatric Center (RPC), into a new program, with the doors open, and modeled on the principles of Recovery. These were my only guidelines. In preparation for thinking about what this new program would look like, I visited many model programs in the tri state area, including Fountain House and Hands Across Long Island.
I had visited Fountain House on a number of occasions during my training as a psychiatrist in New York City and was familiar with the positive energy of the place. While I was a resident at Bellevue Hospital, I worked with people who attended Fountain House and who spoke very highly of the program. The main reason I eventually chose to model our program on Fountain House is that it empowers members to take on central roles in the running and direction of the programs, and consequently, they thrive in taking control over their lives.
I felt that having a clubhouse on the grounds of a State Psychiatric Hospital - where the systems in place don’t seem to engender a sense of hope, agency and self worth in the people we serve - would actually help transform the entire system of Rockland Psychiatric Center into a more Recovery oriented direction.
In late January, 2010, the locked program ceased to exist, and after a quick coat of paint on the walls, the Recovery Center opened. It was an interesting and deeply rewarding experience. The biggest challenge was moving staff and members of a locked program, modeled on day treatment, into a program with the doors wide open, where we requested that members decide what they wanted the program to become.
The members had a lot of ideas, and we were able to quickly group their ideas around 4 units: Employment, Administration, Community Access, and Wellness. I would say that the members had the easiest time making the transformation to the clubhouse and really led the charge. Some staff embraced the model from the first day; others were skeptical, but embraced the model once they saw the progression that people, some of whom they had worked with for many years, began to make as they became more involved in the Recovery Center. Other staff continued to struggle, or appeared disinterested in the model, and did not thrive in the new program.
In our first month, a group of members and staff visited Fountain House, our first of two visits in the first year of opening. At Fountain House, our members and staff worked side by side with Fountain House members in their employment and clerical units and in the horticulture program. After both visits, everyone came back to the Recovery Center with lots of ideas, many of which were implemented in our own program. Some of the highlights in our first year of opening include the following:
Three members of the Recovery Center and a staff member attended a social security and benefits seminar, after which they designed a series of informational workshops that they offered to other members in the Recovery Center.
Two members and the Center’s Director were featured on Health First, a TV show on Cable TV in Westchester County.
Members taught other members how to read bus schedules and maps, and then take public transportation. Members proficient in using public transportation accompanied peers on trial runs of their desired bus path, until they felt comfortable taking busses on their own. One member reported afterwards, “I took my first bus ride in eight years, and I feel great.”
A Recovery Center Choir was formed and has performed on inpatient units, at annual events, and in the community.
A creative arts program was formed, modeled on the Creedmoor Living Museum. The RPC Living Museum now has shows throughout the year, and many artists have been featured in their own shows in galleries and libraries in the community.
Members held the Center’s first open house during the summer of 2010. Politicians and the press were invited. A member who ran her own events planning company taught others how to make a balloon arch for the entrance, and members decorated the space with their own artwork. The choir performed songs, and members provided tours for guests from the community.
One member, a certified public accountant, provided members an ongoing workshop on budgeting.
Three months after opening, we created a Public Service Announcement where the members of the Recovery Center spoke about the impact of stigma on their lives. The PSA was written by members after workshops and discussions about they wanted to convey in the PSA and what they wanted to get out of the experience. The PSA was shown on cable TV stations in the counties where Rockland Psychiatric Center provides care. Check it out on YouTube!
The Recovery Center is now in its third year, and we are currently opening our 2nd clubhouse in Poughkeepsie. By the time this article goes to print, that group will have visited Fountain House, just as RPC’s clubhouse did three years earlier. There have certainly been challenges, most of which come from the funding and regulatory limitations of being connected to a state psychiatric center. However, the benefits and rewards of creating this program have greatly outweighed the frustrations and challenges. Many people have been able to attend the Recovery Center as inpatients, go out in the community, obtain jobs or school admission, and move on from the hospital setting. Members of the Recovery Center serve as models for other patients at RPC; they’re paid to run groups on recovery and to co-lead art groups in clinics and inpatient units. As a result, people who are inpatient see that the Recovery Center can help them achieve their goals, and more importantly, that there is hope and recovery.
Fountain House is pleased to announce the publication of “Work-Ordered Day as a Catalyst of Competitive Employment Success” in the September 2012 issue of the journal Psychiatric Rehabilitation Journal.