The Underground Meets Mainstream: TIP at NYUSubmitted by scatter on Tue, 09/18/2007 - 6:00pm
The Icarus Project
Internship Final Paper
My life changed forever on November 17, 2005, the day Sascha walked into my class to discuss the Icarus Project. The course was an interdisciplinary seminar called Mad Science/Mad Pride at the Gallatin School of Individualized Study at New York University taught by professor Bradley Lewis. We discussed madness, mainstream psychiatry and the growing controversies of the interface between the two. We were meeting in the “Broome Room,” a student lounge in the Broome Street student housing building. The Broome Room was our place to meet off campus in support of the graduate student strike. We spent a couple months in that room, with our notebooks in our laps, some of us sitting on the floor and the others on the horribly uncomfortable university dorm couches that one could find at any college across the country. On this particular day I sat there quietly, staring blankly at the others in the room, waiting, when suddenly Sascha walked through the doors.
The energy of the room instantly changed dramatically. It seemed as if he was from a different planet, one that I was somewhat familiar and comfortable with, but not one that exists anywhere within the NYU community. His undone hair, ripped jacket and pants, scarred and tattooed arms, and falling-apart and patched backpack was unfamiliar to the NYU classroom scene. It was obvious he lived a much different lifestyle, with much different goals and aspirations. Although he looked different from all of us, we all soon realized that his experience resonated with many others in the room, that he was not alone and that we were not alone.
Sascha was able to break down walls, which had existed the entire semester. We were in a class discussing mental illness and health, the mainstream system and many of the problems associated with it, yet no one ever brought up their own personal experiences, no one ever told their stories. With the charismatic telling of his story, Sascha was easily able to get people to talk about their actual lives and things that happened and really mattered to them. It was the first time I got to know a little about the lives of the strangers I studied with. He connected all of the material to each of us on a personal and individual level. Previous to his visit, all of the course material was kept at a distance from our personal lives and was discussed as this abstract thing that exists in society and is experienced by others. Though most of us were aware that the mental health system affects many of us, and not just the people on the street or in the hospital, we had never had an open discussion about it until Sascha came in and shook things up a bit.
Sascha described the values and goals of the Icarus Project. He painted a picture of an organization in which they believe “that when we learn to take care of ourselves, the intertwined threads of madness and creativity can be tools of inspiration and hope in a repressed and damaged world” (the Icarus Project mission statement). With every word that he said, I felt like they were created specifically for me. It was almost a spiritual experience, to have someone speak words that resonate deep down inside your thoughts, ideas, values and emotions. During that class Sascha said that they were looking for students to help the Icarus Project do some organizing on the NYU campus. They were interested in creating a safe place where students could talk with each other about their mental health issues and create networks of mutual-aid and peer support. The Icarus Project on campus would open up the dialogue about these issues and eliminate the shame that so many feel about their mental health issues. I wanted to get involved and help make this a reality. Though I wasn’t very vocal during the class itself, at the end I made sure to introduce myself to Sascha and have my desires to help out and get involved heard.
That day I felt like I had been saved. At that time in the semester, I had reached a point of distress and panic because of all that I had learned about the current state of the mainstream mental health system. I have always been interested in the human mind, the human experience and helping others. I started my psychology education in an independent research program at my high school doing a study of divorce and its effects on adolescents. This was a non-traditional introduction to psychology because I developed the project on my own and didn’t have any solid academic background in psych. When I first came to NYU, I took Intro to Psychology in the College of Arts and Sciences as well as Human Development in the Steinhardt School of Education. These were large lecture hall courses where each individual was treated like a number rather than a person. I took up a seat in the classroom, but I had no face and no name. After completing that first semester, I was no longer sure that I wanted to study psychology because neither class seemed particularly right for me. Intro to Psychology emphasized the science and Human Development emphasized the theories of particular people, but both courses failed to touch on issues of the human experience, societal and cultural contexts and how these things may affect our experiences and our health. Most importantly, neither course addressed how society has determined our definition of mental health and mental illness.
Because I was no longer sure what I wanted to do, I decided to take a break from psychology and explore new areas of study. After a semester of no psychology, I realized that I was still interested in studying the underlying basis of the discipline but thought a different approach might be more appropriate for me. So I registered for the Gallatin course called Mad Science/Mad Pride, where I would be 1 of 20 rather than 1 of 300, where I would have a face and a name.
On the first day, I knew the approach taken by Brad Lewis would be more appropriate for me because he took pictures of us. The pictures were significant because they indicated that Brad was interested in knowing my face, my name and the person that exists behind my student identification number. His course took me on a roller coaster ride of interest, inspiration, confusion and fear. I was really pleased to learned all about the world of the mental health systems and the various roles that people can play within the system. It is a confusing world that I was finally able to understand and see the various paths to be taken. Although I was learning more about each specific path, I was becoming increasingly uncomfortable because I realized that it was all structured in a very specific way, and I could not see myself fitting comfortably into this structure. These realizations caused me much stress, anxiety and fear of the future. The mainstream seemed too dehumanizing, too chemical, too plastic, too rigid, too controlling, all with the wrong underlying intentions. The goal underlying the mainstream mental health system seemed to be to cure, and to fix people, to fit our society’s specific definition of “normal” and “healthy.”
My education in Mad Science/Mad Pride extended beyond the mental health system to a new understanding of our systemized society as a whole. I began to see how our Western culture has many cracks that so many amazing, talented and intelligent people can easily fall through, with no one to catch them. As the Icarus Project publication called “Navigating the Spaces Between Brilliance and Madness” describes, “We live in a culture where it’s considered healthy to eat food made out of toxic chemicals and happiness is defined as something that can’t hurt you, like steady jobs and gated communities. We live in a society where affluent people prevent wrinkles by paralyzing their facial muscles with bacteria and prevent worry by implanting computer chips in the bodies of their pets. We live in a country that has more prison inmates than farmers. We live in a world where McDonalds was allowed to build a restaurant in front of the pyramids in Egypt. We live in times where it is considered radical to ever think that people like doctors and reporters might not always be telling the truth.” As I became able to put all of these realizations into context with my life, my future and my place in the world, I became very disturbed. I was very scared and frustrated because all I really wanted to do was study what interested me, help others and have a good time doing it. I saw no place in mainstream mental health in which I could do all of this. Once again, I almost gave up on mental health altogether to follow a career in the arts, which might have been satisfying and enjoyable but still seemed incomplete for me.
My introduction to Sascha and the Icarus Project totally eliminated my fears and reversed my discouragement. When I left that class, I was elated that some people felt the same way as I did and were doing something about it. By being introduced to the Icarus Project and Sascha, I realized that there was a place for me in the world of mental health. Even if it was a small place that has not yet infiltrated mainstream culture, there was a place, and there were people that were doing what I wanted to do. It was the first time all semester that I had learned about some facet or aspect of the mental health field that made me satisfied and comfortable. I walked out with a giddy, excited energy penetrating and inspiring my whole body and mind. I had found a place for me. I realized that even if the Icarus Project wasn’t the answer to my career, I could create my own path, one outside the structure of mainstream education and society, just as the founders of the Icarus Project had.
Growing up I was always in a structured system of education, which seemed to spill over into this constructed idea of how a life should be lived. I went to a public elementary school, which prepared me for my public middle school, which prepared me for high school where I took a lot of difficult courses that were mostly decided for me to get me into a good college. I went to the good college and began to feel the pressure of a system that seemed to be controlling my life and putting me on a specific path rather than allowing me to create it. Even though I ended up at Gallatin, the School of Individualized Study, the university with out walls, I felt trapped. I knew that one day I would be released into the “real world” where mainstream culture constructs many walls. By learning about the Icarus Project I realized that life is organic and that I can take many paths that exist both outside and within the structure of “how we are supposed to live.” I always knew I was different, but I hadn’t separated myself and my identity from the system of the mainstream until I read “Navigating the Spaces Between Brilliance and Madness.” An entry in the publication states that “we’re given so many maps of how to live our lives by the society we are raised in. Some of the maps are constructed by the shows we watch on television and the lessons we learn in classrooms; some are drawn up at our family kitchen tables and our doctors’ desks. We’re very impressionable creatures; everything we experience leaves impressions on us. All the moments of pain and elation carve into our terrain with the crooked grace of rivers and ravines. The instructions we receive about how to cope, what is good, are like roads across and into them. Most people stick to the accepted roads. It’s a scary thing to deviate from the path. But for so many of us with thin skin and drastic changes in personal elevation, life is too hard to plot on a grid: the coordinates are always shifting. People like us don’t have any choice but to figure out our own paths or be forever lost in land that never feels like home.”
I realized that many of the people who struggle with mental health issues are those living in the countercultures and the margins of mainstream society. It is ironic that the care and services that society provides for them and uses to try to reach, affect and “fix” them are so institutionalized, so mainstream and so systemized. Life is fluid; people are fluid. Most of those labeled mentally ill are simply suffering with being forced to live in a rigid and systemized world. For them, getting help from the worst manifestation of the “system” seems a bit ridiculous, useless and in many cases harmful rather than helpful.
So I took the initiative to set up an Icarus Project internship through Gallatin. My role was designed to be a liaison between the project and NYU. This is not something that had happened before. Before January, the Icarus Project, besides their alliance with Fountain House, a mental health service agency and residence, for the most part, existed outside mainstream culture. As a radical, grassroots organization, the Icarus Project has been on the edges of mainstream culture, until we brought it to the table at NYU. This has been my challenge: to figure out how it is possible to, and what it means to, incorporate an organization like the Icarus Project into a very mainstream, bureaucratic and corporate institution like New York University.
From the beginning, we saw Gallatin and the opportunities it provides as Icarus’s door into NYU. Last semester the Icarus Project co-hosted an event with Students for Social Equality, an on-campus student-run club. This event generated some interest in the Icarus Project on the campus, but no student had enough time to dedicate the energy that is required for working with the administration to bring such a radical organization to NYU. The only way we were really able to make this a reality was through the internship program and student club program at Gallatin. Also, Gallatin is a community of many open-minded students that is more likely to resonate with the values of the Icarus Project than the students at CAS. We see the Gallatin School as a place to establish ourselves in a safe and protected community that we know will welcome us. Once established, we will reach out to the larger community.
Soon after my fellow student, Kiyoko, and I became interns and were committed to doing organizing work on campus, we were taken seriously by the university administration at large. Sascha and Brad started conversations with some administrators who were interested in the potential role of the Icarus Project on the NYU campus. Shortly after the semester began, a meeting with Sascha, Madigan, the interns, the administration, and our allies, Todd Smith of LGBT and Brad Lewis, had been arranged.
The next thing I knew I was riding the elevator in Bobst Library to the 12th floor president’s conference lounge. We were these crazy looking, spiked and dyed-haired freaks waltzing past the security guards outside the entrance to the 12th floor of the notorious Bobst Library. As I rode the express elevator, I couldn’t get the thought of the recent suicides in Bobst Library out of my mind. All I could think about was which floors did they jump from? Where did their bodies go splat on the floor? Did it make a loud noise?
We were there to talk to the administrators who would be involved if the Icarus Project were to be on the NYU campus: the coordinator of the wellness center, the director of university counseling services and the vice provost of student services. I will never forget the image of the mix of people sitting around the table in the sterile room, where many important decisions are made, with a view of Washington Square Park, the Empire State Building and all that is in between. The essence of the scene was captured by Madigan with her bright red hair, ring through the middle of her nose, her big purple boots and funky, cute dress sitting next to Paul Grayson, sporting his counselor costume which consists of pants, a dress shirt and tie. Though kind of a tense meeting, it really was a beautiful sight. This image represents the process it takes to bring a radical, grassroots organization to a large, corporate, bureaucratic institution like New York University.
They listened and they questioned. The NYU administration wanted to hear what we had to say and was considering welcoming us onto the campus, but there was tension and their welcomes seemed questionable. They knew we may be able to help reach those students who need help but are isolated or marginalized by mainstream culture, and they welcomed us because of this. However, I think we were perceived as somewhat of a threat to the services already provided on campus. During the meeting we made it clear that we want to work in an “and also” fashion rather than an “either or,” meaning that we wanted to work together under the assumption that students will draw from resources of the University Counseling Services (UCS), the Wellness Center and the Icarus Project and use a combination of what is most appropriate for the individual. We did not want to be a threat. We wanted to be a support and we wanted to be supported by the existing programs and services on campus that followed a more mainstream structure. But at the same time we wanted to make sure that we stood strong and that however we manifested the Icarus Project at NYU with the administration, we could maintain the values of the Icarus Project. We had to make sure to avoid giving the project to the system and letting go of our values.
Right before we had our big meeting with the NYU administration, I had discussed with Brad Lewis my ideas and concerns about the place of Icarus in the world, in and out of mainstream culture and its approach and capacity to change the world. I was frustrated because I did not understand why the Icarus Project focused so much on how we are different than all other mental health organizations and approaches. Through reading about recovery-based programs and other things that are similar to the ideals of the Icarus Project, I became aware that there is a movement within the mainstream toward a more humanistic, self-determining and peer-based approach to mental health care that is being recognized and cultivated by mainstream institutions. An example is the “Peer-to-Peer Resource Center.” The center believes “that the support of peers – other mental health consumers – is essential to wellness and recovery.” They “are working to bring peer support the recognition it deserves, and to make peers an integral part of every consumer’s recovery team.” Their “goal is to advance training and certification of peer specialists who work with other mental health consumers to promote outcomes of self-directed recovery, independence, and community integration” (peersupport.org). The New York State Office of Mental Health also instituted self-help and peer support programs. They emphasize empowerment and help provide “the means and opportunities and authority to take personal responsibility for attaining one’s objectives” (www.omh.state.ny.us). These values and goals are similar to those of the Icarus Project. It seemed to me that the Icarus Project would not be successful in changing the world by staying outside of mainstream culture on the fringes of society. I thought that maybe we could be more effective in changing the world, if we began to cooperate with the people making small changes for the better in the mainstream.
Though I thought Icarus and the mainstream could work together, I was aware of the few fundamental differences between the Icarus Project and a more mainstream program like a recovery-based treatment program. Some differences are the language used to describe the situation and the notion of illness. All mainstream mental health programs abide by the idea that people with mental health issues are “ill,” “diseased” and need to be changed or recovered. The Icarus Project approached this idea from a different perspective, believing that we are struggling with emotional extremes that must be taken care of, not eliminated, and we must have support from our communities to remain healthy. Within the Icarus Project we don’t use the language of recovery, we have created our own language. At first I didn’t understand why we couldn’t put these differences aside and just focus on the similarities between the Icarus Project and what is happening in some mainstream mental health systems. I figured that once we infiltrated and gained the trust of mainstream institutions with money and power, we could have an affect on changing them and changing society.
As I thought about it more, I realized that the fundamental aspect of “disease” and “sick” was not a difference we could put aside and join their bandwagon. Also, the heavy emphasis on creativity, which is so essential to the health of many Icarus Project members, was lacking in the recovery-based models. The final moment when I became completely satisfied with the Icarus Project’s approach to affecting many people and changing the world, including mainstream cultures, was the day I sat in the president’s conference lounge with Linda Mills, Paul Grayson, Zoë Ragouzeos, Todd Smith, Brad Lewis, Madigan Shive, Sascha DuBrul and Kiyoko Panzella. It was at this meeting that I realized that the Icarus Project was in fact working to infiltrate the mainstream. Instead of trying to work with existing mainstream models, we were entering mainstream society through a different door, the university. After thinking it over, I found this approach to be very satisfying. The university is filled with many young people just beginning to learn about the world in which they live. Many students have a very difficult time figuring out how they want to participate in the world. The pressure and stresses of college life can be such a difficult struggle, it can leave students depressed, anxious, suicidal and on the road to madness. The university is the perfect place to reach out to these students, to help them learn to cope and to give them the opportunity to adopt the values of the Icarus Project. Because the college students of today are the future leaders of tomorrow, they will be the ones adjusting and creating the mainstream methods and approaches to mental health in the future. They are the ones who will have the power to effectively change this society for the better. Meeting the administration was the first step to be taken to make all of this possible.
After we had been introduced to the administration and opened a communication bridge with them, a few issues quickly arose. We hit our first wall, put up by an administration wanting to have control and authority over what we do. We told them that we were having meetings at Gallatin. Though we were only doing organizing and planning, they were confused about this and became concerned that we may touch on some sensitive issues that could potentially jeopardize the safety of students. They feared that a crisis might arise when discussing emotional and personal issues that we would not know how to handle. The fear was generated by the recent suicides. We were also reminded that all eyes are watching us, so we must be very careful. As Linda described it, safety is their number one concern. When a parent sends their child here, NYU has an unwritten contract to make sure the student is sent home safely, in one piece. The recent suicides raised their concern to a level of paranoia about the liability issues surrounding students’ safety.
Essentially there seems to be a fear that if something like suicide is spoken about, it could encourage a suicide. There is a theory that when a suicide occurs and gets public attention, it spreads and other people are more inclined to end their lives. Basically, the idea is that suicide is contagious. This phenomenon could be observed at New York University in those couple of years when just prior to my arrival, there were many suicides. In response to these suicides the university decided to keep quiet about them in order to keep suicide off the minds of students. The problem with this is that witnessing a suicide is very traumatic and not being given the opportunity to talk about the experience is detrimental to healing. There were students on campus that first handedly saw a suicide or the body afterward, there were those kids who knew those who had committed suicide, and there were those who simply just heard about it, but all suffered some sort of trauma. These students were not given the opportunity to speak out about their experience and raise the issue in the community as something we need to deal with and try to avoid in the future. They were not given the opportunity to heal in the community and with community but were left to feel isolated in their traumas and experiences.
NYU’s method of avoiding suicide in the future was simply to lock the windows in the dorms, lock the doors to balconies, and put up plexi-glass windows behind every railing in Bobst Library. They also decided to keep it quiet and not to take action or raise awareness that this is a serious issue in college and youth communities across the country. Because of the University’s fears, we were held back for a couple of months. In the end, they decided that we must have a counselor present at all of our meetings to make sure that we all remained safe.
My first reaction to this decision was anger and frustration. I felt as if they were ruining us before we had a chance to begin. Having a counselor present goes against the non-hierarchical, non-authoritative values that we hold high at the Icarus Project. The whole idea is to create a community where we support our peers, where we engage in discussion with those who understand our experiences, without the presence of a trained professional. The university’s request was a wake-up-call that this would not be an easy process. I became aware that each party would have to give and take a little to compromise with some time that would work and feel comfortable for us Icarus members and the university administrators. Bringing a radical, grass roots organization to NYU would involve finding an appropriate balance, while keeping our boundaries strong so we remain the Icarus Project and hold up our beliefs and values. There was a fear among Icarus members that we would get a spot on campus but that the all-powerful administration would take over, run our club for us, make unreasonable rules in the name of “safety” and rob us of our project and goals. Due to liability, the university understandably wants to have control over what happens on their campus, but this was ruining our progress. We want to help others, and an essential part of that goal is self-determination and non-hierarchical organizing, which cannot be upheld under the tight rule of the administration.
As some time passed and we all spoke with each other about the decision, I was better able to understand the point of view of the university and began to have hope that we could give in a little, build the relationship, and then gain more freedom once they began to understand us and trust us. We realized that the more they knew about us, the more they would probably like us and let us do what we need to do to organize on campus. Kiyoko and I met with a counselor named Kesia who was designated as the UCS representative that would attend our meetings. We discussed her role when attending the Icarus meetings. She understood and accepted of the idea that she would not be involved in the discussion but was there as a ally and to help out if needed or if some issue came up.
After that meeting we were a little bit more comfortable with the presence of a counselor and the relationship that we were building with UCS and the administration. Kesia attended our next Gallatin meeting and saw that were not yet discussing personal or sensitive issues, we were not touching on issues that were a threat to our safety. We were simply talking about our upcoming events, ways to do outreach and the process of becoming an established club. Around this time I voiced my frustration about not being able to organize and continue the momentum we had initiated due to the limitations of scheduling with the counselors. I guess the UCS counselors discussed the issue with the administration and decided that we could have the liberty to meet independently as long as we kept the meetings to simple organizing. This was a significant moment in our process, because after giving in a little, we got to take a little and proceed with what needed to be done. We continued our meetings and discussion of the place of Icarus on campus and continued to establish a core group dedicated to the Icarus Project at NYU.
In retrospect, it seems it was a matter of having some time for the Icarus Project and the administration to get to know each other. The more they learn about the Icarus Project, the more they seem receptive and willing to give us a home at NYU. The Icarus Project is not something easily understood. I have been working with it for 5 months now, and I am still in the process of figuring out exactly what we are trying to do and what exactly we’ve accomplished. Since I’ve been doing the work, I’ve had to explain to many people what the Icarus Project is. I had it boiled down to “a radical community based mental health support network.” It was great to get it into one line, but this doesn’t really get the message across to most people. It doesn’t encapsulate the whole that is the Icarus Project; it is simply too rich to put to seven words. I usually need to do much more explaining.
I learned that working cooperatively with mainstream institutions is about respect and building trust. I realized that people wearing suits and ties, who are the directors of what are seemingly evil and dehumanizing institutions, are simply other humans who are struggling with living in society and have found a different way to deal with it. They are not evil, they are trying to do their best to help others, and they just may be a little confused about what it means for some of us others. Though sometimes it may seem like they are, they are not out to harm us or hurt us. Learning to respect the path that people have chosen is a huge element in being able to work cooperatively and effectively. It would be very difficult to build this community if we remained resentful and disrespected those who have the power to make or break our existence on campus and our capacity to change the world.
The notion of going against mainstream psychiatry and changing the system is one that has come up through out history. Many people in the past have thought of alternative ideas of what mental health is and alternative approaches to achieving mental health. R.D. Laing critiqued psychiatry with radical views about what mental illness is. R. D. Laing’s opinions on the underlying causes and methods of treatment were influenced by existential philosophy. He went against the psychiatric orthodoxy of his time by viewing the experience of psychosis and other mental disturbances as a valid description an experience of life or reality rather than as symptoms of some biological disorder. He created a community project where therapists and patients lived together. The documentary made about it was titled “Asylum” in the sense of “a place offering protection and safety; a shelter” (dictionary.com). This was a radical concept for his time, and it is a radical concept for our times as well. Dr. Donald Moss of the NYU Psychoanalytic Institute has been quoted as saying, “‘R.D. Laing disrupted the paradigm of analyst as subject and patient as object that had shaped clinical theory from Freud on. Laing insisted on a practice based on identification, not on objectification. The authority of one's interpretation was to be grounded in either a momentary or prolonged participation in the other's 'condition'.’” (laingsociety.org).
Thomas Szasz was another influential critic of psychiatry. According to Bradley Lewis, “For Szasz, physical illness was real because it was based on actual observation, but mental illness was at best a metaphor.” His argument had two elements. One was that mental illness is a myth. The other is “there should be complete separation between psychiatry and the state.” His ideas caused him to be “shunned within his own field” (A Mad Fight). The radical thinkers of the past did not have an easy time working within in the mainstream. Throughout the semester I often got frustrated because the administration seemed to be making it very difficult for us to achieve our goals. I felt like things were not moving quickly enough and we weren’t accomplishing enough. After conversations with Brad, I was better able to put our work into the context of history. I realized that what we are trying to do is not easy and has never been easy for radicals of the past. I was able to recognize all the success we did have and all the progress we made.
` I see much hope for the future. As Brad Lewis describes, “During the last thirty years of their struggle, Mad Pride has increasingly infiltrated the mental health system rather than simply criticizing it from outside” (A Mad Fight). People are taking more and more political actions across the country to change the system. When we met with the Zoë Ragouzeos and the employees of the NYU Wellness Center, Ashley, co-founder of the Icarus Project, was impressed by the services that they provide. The university she attended not too long ago did not have services like the ones already provided by NYU and left her to her own devices through her struggles. During this meeting, I was pleased to realize that improvements are being made to provide more adequate and appropriate support for students in mainstream institutions. While institutions like NYU are taking small steps toward change, the Icarus Project is expanding. In the past six months that I’ve been working with the project, I’ve seen it grow tremendously. The more solid the project becomes outside the mainstream, the more effective we will be in affecting the mainstream. I have a vision of a day when there are established communities on college campuses across the nation where the stigma surrounding “mental illness” has been eliminated, communication has been opened, and there is a network of students committed to supporting one another through their struggles. We are building a strong community, both outside and inside the NYU community, and moving in the right direction.