For many years, those of us in The Icarus Project and fellow traveler organizations have been driven by the need to be direct actors in our lives: not just protesting the current system but actively creating new ways of living for ourselves and our loved ones. It’s this spirit of direct action and need for genuine mutual aid that has propelled my community forward and given so many of us a sense of purpose and camaraderie in a world that can be crushingly alienating and violently small-minded.
Importantly, I believe it has been our sense of outsiderness, a distrust of larger mainstream narratives about the world, that has allowed us to stay out of the public discourse and cultivate new and alternative ideas in our cultural underground. But the beauty of sticking around for a while is that we’re living to see some of our “outsider” ideas beginning to challenge modern psychiatric doctrine in the public arena, and our “radical” mental health stance is slowly re-visioning important conversations and practices.
Given the current toxic political climate for those of us labeled “mentally ill,” the recent publication of We’ve Been Too Patient: Voices from Radical Mental Health is a solid victory for all of us who have been working hard to transform the public mental health system from the inside and the outside. The book documents a new direction of a growing movement that is increasingly creative, tactically diverse and full of visionary spirit. I’m happy to be one of the chorus of voices in its pages.
There are many themes that weave throughout We’ve Been Too Patient and one of them is the role of “peers,” or people like me (and maybe you) who have the “lived experience” of struggling with serious mental health issues and who work to support each other from a stance of reciprocity and mutuality. Where do our lived experiences and understandings of the importance of mutual aid fit into the current mental health system? Where does the wisdom that comes from hardship fit into the transformation of the mental health system? Can we see ourselves beyond the tired narratives of “reducing stigma of the mentally ill” and instead see ourselves as being part of the evolution of a sick society?
In a system that has always relied on the authority and hierarchy of medical professionals, the introduction of “peers” as workers creates the potential to shift dynamics in positive ways that are often challenging for clinical workers. At their best, peer workers create an opening in a formally closed system: a space which allows for new voices in an old model, especially if there is a vibrant peer movement outside the system offering alternative visions and creative practices. In this way the peer role is a potential change agent in a system desperately needing change.
The editors of We’ve Been Too Patient published a section of a paper I wrote just as I was finishing my Masters in Social Work a few years ago. After twelve years of working outside the system developing a peer support network and media project with my friends, I made the fateful decision to go back to school and become a clinician. My personal journey led me back to my hometown of New York City as a student at Silberman School of Social Work.
It’s important to note that one of the reasons I decided to go to social work school was that I desperately wanted mentorship — supervision from people wiser and older than me. After many years of navigating roles of unofficial authority in The Icarus Project, without any kind of system of ethics holding myself and others accountable, I longed for clearer boundaries and the power and camaraderie of a professional group. I was grateful to find in social work a profession where an analysis of oppression was incorporated into the healing practice and worldview, unlike other schools of therapy. I also saw that if I wanted to have an effect on the larger culture I would need to be able to understand how people were being trained to be workers in the public system, and it would help to have the legitimacy of a master’s degree. I truly wanted to understand what it meant to play the role of a mental health “clinician”.
But I soon discovered that there was virtually no space in my classes for fellow students and I to talk about our own lived experience related to mental health and illness. While we were encouraged to have open conversations about our relationships to other forms of oppression — race, class and gender — and there were multiple semester-long classes to make space for these important discussions, it was very much a taboo subject for clinical social workers in training to talk about their diagnoses and things like taking meds and navigating complex identities. While plenty of my fellow classmates had struggled in all kinds of ways, it was considered unprofessional to talk about it.
Furthermore, I heard stories from my classmates regularly about the poor quality of their supervisory relationships, and how little space there was for genuine reflection in the workplace. Those experiences made me realize that the kind of mentorship I was looking for was most likely not going to come from my school or the clinical environment of public mental health agencies.
At the same time, I was working as a clinical intern on a mobile treatment team that was a mix of clinicians and peer workers. It was an experimental project funded by the city called Parachute NYC that worked directly with people recently let out of the psychiatric hospital who were diagnosed with psychotic disorders, and their families. It was a very creative environment marked by a tolerance for uncertainty and a team who were all trained in Intentional Peer Support and Open Dialogue style practices. It was very untraditional and not surprisingly has since been defunded, but a whole bunch of us in New York City, peers and clinicians alike, had the opportunity to be a part of it over a period of four years.
As an intern at Parachute NYC I became very interested in the working relationships between the peer workers and the clinicians, in part, no doubt, because I was struggling with my own identity as a “peer” and a “clinician.” But my interest truly sprang from witnessing and participating in many positive examples of peers and clinicians collaborating for the benefit of the families we worked with and for the benefit of our team. There was so much wisdom brought to the table by peer workers, and because of the training environment, the clinicians were given the opportunity to be way more open than a conventional team. What this looked like in practice ranged from clinicians changing the kind of language they used in meetings to giving peer workers the authority, on the ground, to take the lead in situations where they clearly had more expertise. In practice, over the course of my year at Parachute, I saw the team leader genuinely revising the protocols for engagement so that clinical work ended up looking more like the peer work — a lot more power sharing, a lot more self disclosure. My paper explored the possibilities for the peer role on a clinical team to be truly transformative and visionary in the context of the public mental health system.
Struggles and Opportunities for the Peer Workforce
Right after I finished my paper and graduated from social work school, I was hired by the Center for Practice Innovations to develop a model of peer support and trainings in a national First Episode Psychosis Program. I was also put in charge of training all the ACT Team peers in New York State. I immersed myself in studying the peer role and the possibilities for integrating creative peer work into a clinical model of care. It was a very challenging job. For starters, while there are many of us out there who see the peer role as an agent of change, on a national level the peer role in the public mental health system almost seems as if it was created with the vision of building a cheap labor force to implement traditional clinical tasks like case management. There is an eerie lack of role clarity for most peer workers, which is a great way to take a marginalized group and keep them on the margins. There’s a kind of tokenism in the way the language of “peer” stops signifying “peer support” and ends up signifying “person with a mental illness” or “person in recovery from a mental illness.” Also, in almost every case I’ve seen around the country there is a lack of solid hiring practices, comprehensive training, livable wages or career ladders beyond the murky entry level position. All of this makes it really hard to work as a “peer” in the mental health system.
But most importantly, I believe the biggest stumbling block to the growth of the peer workforce comes down to an ideological issue: the medical model still dominates the culture and practice of the mental health system and that means people in peer roles are forced to navigate a work culture where they are seen as mentally ill and have to use language that was designed for clinicians to assess and diagnose. Underneath the ubiquitous language of “recovery” the medical model is waiting there like a guard of the old order to keep us thinking about illness, disease and disorder. “Recovery” language (which in the system where I worked often has “illness” embedded in it) is used as a sneaky way to keep the old power dynamics entrenched. It is very hard to build progressive practice upon these foundations if we don’t challenge the heart of the problem.
The labyrinth I’m describing is where I’ve spent the last three years of my life. During that time I came up against a lot of systemic issues that made it incredibly challenging to implement genuine “peer” services in the system, but I tried my best: I worked with a lot of really good people at the Center for Practice Innovations, a lot of people at the City and State levels who want to see changes, a lot of national organizers and researchers and trainers like Pat Deegan and Nev Jones who pour their hearts and souls into trying to build better services for people diagnosed with serious mental illness. I made a bunch of friends and learned a lot of important lessons in the process about what is and what is not possible in the current system.
There are a few victories I can count in trying to play an evolutionary role for the peer workforce. During the time I was working I built an unofficial network of collaborators and we communicated from across the world with each other. I sat at my desk at the New York State Psychiatric Institute in Manhattan and had conversations with all kinds of system stakeholders and outliers who I now consider friends.
At CPI we clarified the language of the peer role for our programs and drew explicit distinctions between what it means to be “peer” and what it means to be “clinical,” in a way that is potentially useful for other programs in the rest of the country. In the ACT Institute we developed a Scope of Practice Document over a period of a year with a group of more than 20 stakeholders that is being used to clarify the peer role on ACT Teams in New York State. We developed trainings for the clinical supervisors of peers and created explicit tools for discussion about the ways peer workers transformed the culture of the clinical team. I had the chance to mentor a whole group of new peer workers and developed an Office of Mental Health version of Transformative Mutual Aid Practices (based on an old Icarus Project tool) to help them learn to talk about their inner worlds and how to do direct service work from a place of mutuality.
I gave endless trainings that attempted to challenge the medical model in creative ways: “Multiple Frameworks for Thinking About Psychosis,” “Minimizing Power Imbalances,” “Mutual Self-Disclosure,” “Trauma Informed Perspectives.” One thing I can tell you: some of the most amazing folks I’ve ever met are peer workers in the public mental health system and the people who train them. Another thing I can tell you: it’s hard for people like us to stick around the system for too long because it’s lonely work, and the system was not designed for people to bring their authentic selves, especially when those selves are naturally wild and creative. The persistent medical model language and culture, the old school clinical boundaries, the absurdly low pay for people without academic degrees, it’s often a recipe for moving on.
The Peer Workforce Into the Future
In 2019 there are cohorts of peer workers and their clinical supervisors being trained in practices that came directly from grassroots peer movements like The Icarus Project, the Wildflower Alliance and the Hearing Voices Network. Around the time I started working in the system, my friends and I founded the Institute for the Development of Human Arts and we have been actively organizing peer workers in New York City. At the same time, we teach classes to mental health workers and are training a new generation of clinicians and peer workers to think about their personal relationship to mental health and illness. We are actively creating spaces for conversation about what an evolved mental health system can look like and trying to put our ideas into practice. We are building that network of mentorship that is so desperately needed for those of us working to transform the mental health system. If we put our energy into developing a strong and creative grassroots peer support movement outside the system, there’s a possibility we will be able to influence the growing peer specialist workforce in North America and help to positively transform the public mental health system.
If you’re interested in reading my article in We’ve Been Too Patient, “Underground Transmissions and Centering the Marginalized: Collaborative Strategies for Re-Visioning the Public Mental Health System,” and the rest of the 20 articles that represent a new generation of perspectives on the mental health system, learn more about it here. If you’re interested in being part of a reading group then be in touch with me. See you in the future we are creating together.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.