Jordan, Maguire Fellow in Vermont

Jordan G. is a graduate student studying medical anthropology. He was awarded a Maguire and Irby Family Foundation Public Service Fellowship for summer 2017 from the Cary M. Maguire Center for Ethics and Public Responsibility at SMU. He is spending the summer volunteering with The Hive, a public mental health service group in Brattleboro, Vermont.

Engaged Research

I volunteered with the Hive Mutual Support Network because of its close fit with my anthropological focus – grassroots alternatives to the mental health system. And while I’ve shared how my own experiences with psychiatry connect to this work in previous posts, my final week here saw the personal, political and academic (e)merge more clearly. For the Hive’s August potluck, I presented and facilitated a discussion on Survivor-Controlled Research, a form of participatory research done by those who’ve experienced mental health services. Through this, and the rest of the summer’s work, research has begun to take on a meaning for me which feels critical to flesh out in this last post.

Looking out the window of the Hive space.

For context, many members of the Hive (including myself) who’ve interacted with psychiatry have ultimately, if not initially, found it unhelpful, oppressive, or dehumanizing. Mental health responses and discourse (whether diagnosis, medication, or anti-stigma campaigns) caused more suffering and isolation than whatever they were meant to address. In turn, we’ve generated new meanings and identities, politics and movements. These can be at once liberating and further marginalizing – not only by having had experiences labeled as “mental illness” in the first place, but by understanding them and their medical response differently. What’s more, stories that credit treatment with survival – rather than of having survived treatment itself – dominate social narratives about these issues.

Yet as both systems advocacy and radical activism in the last half-century attest, survivor voices matter. Not because other, more visible ones don’t, and not despite survivors’ relative obscurity, but because of it. They matter for a society that has been in a “mental health crisis” since long before the notion of “mental health” existed, and that, despite paradigm shifts, has been broadly unsuccessful in its responses to madness and distress. They matter because they implicate our understanding of human rights and the human condition. And by listening, we have everything to gain.

The Hive is one expression of these voices, and an example of another way: through mutual aid and open leadership, it shifts the locus of power and mode of change. By creating spaces for resistance and alternative discourse, it raises consciousness and transforms the singular into the collective. And by mapping psychiatric intervention and the experiences it claims onto larger systems, it looks beyond the biological and individual. In many ways, the Hive’s structure diagnoses the very social and institutional problems to which it is a response.

At the summer’s final potluck, these personal and political threads merged with the academic. I shared with community members about Survivor-Controlled Research (SCR), a kind of participatory action research that is specifically conceived of and executed by those who have experienced madness, distress and/or mental health services. It emphasizes developing our collective knowledge (rather than knowledge “about” us), disrupting researcher-subject roles and power dynamics, and troubling notions of “neutrality” and “objectivity” as preconditions for making truth claims.

I started learning about SCR last semester and sensed its potential benefit for my own research. In line with the reflexive turn in ethnography, it offers a further check on the distancing gaze and researcher-subject divide in psychiatric anthropology, which, though distinct from clinical research, can still replicate its dynamics. Moreover, its grounding in feminist standpoint theory advocates a more complete (and different) social knowledge, generated by those who’ve experienced oppressive structures themselves. As someone who struggles with/straddles this divide, such perspectives on knowledge production are critical to theorizing my own work.

I brought this presentation to the Hive potluck to hear their thoughts. With SCR in mind, we brainstormed about the goals of research, what motivates its undertaking, as well as what the community might want to ask and how.

Research ideas from the potluck.

While no concrete plans emerged, this was a fitting end to a summer that has produced as many questions as it has answers. I look forward to sitting with the notes over this next year. Most importantly, by engaging in participant-observation – and with my own positions and privileges – I’ve learned lessons that have been both painful and instructive. The future of my research is undecided, but this process has offered a clearer vision of its challenges and possibilities.

Posted in Jordan, Maguire Fellow in Vermont | Comments Off on Engaged Research

Creative Maladjustment Day

 

On Sunday July 16, the Hive hosted a day of free workshops led by friends and community members. Creative Maladjustment Day, as it’s called, is devoted to challenging oppressive systems and celebrating those ways we respond to them that are often labeled “mad,” “noncompliant” or “maladjusted.”

Six sessions, which ran all day, addressed issues such as harm reduction and addiction, healthcare activism, and the interconnected struggles of marginalized groups. There was a good turnout– over the course of the day, about 30 people from the Hive and beyond– with participants enjoying snacks, homemade teas made from wild herbs, and plenty of time to connect with one another. Here’s some background and highlights to give a fuller picture of what this event was about.

The Hive’s Creative Maladjustment Day is a local celebration of the international Creative Maladjustment Week started in 2013 by Mindfreedom, a mental health activism coalition. It takes its name from a speech by Dr. Martin Luther King Jr., in which he proclaimed his pride about being “maladjusted” to such things as discrimination, religious bigotry, and violence. King called for an “International Association for the Advancement of Creative Maladjustment” that would help us “emerge from the bleak and desolate midnight of man’s inhumanity to man” (May 18, 1966, Don’t Sleep Through the Revolution). While he was not specifically addressing the oppression of those labeled “mentally ill,” King’s notion of creative maladjustment has provided an apt framework for conceiving of innovative resistance to dehumanizing forces. In this way, Creative Maladjustment celebrations address those systems– psychiatric and otherwise– to which we are “proud to be maladjusted.” It pitches a tent big enough to hold a range of intersecting struggles, along with their collective knowledge and strength.

The workshop “Compassionate Harm Reduction Strategies for Opiate Addiction” was led by Emily Megas-Russell, as well as her mother and stepfather – both of whom had personal experience with opiate use. Harm reduction, a humanistic approach and set of strategies for supporting people with addiction, is both a radical and commonsense response to the status quo. (Learn more here.) Instead of seeing substance use as “the problem,” it sees it as the solution to a problem, such as a lack of resources or physical/systemic violence. Rather than subscribe to stigmatizing attitudes that reduce people to dirty addicts or fragile patients, it encourages honest conversation about drug use, challenging common fears about “enabling” or “condoning” with authentic connection. Having Emily’s mother and stepfather share their own (and their family’s) stories illuminated this approach, while group discussion challenged the audience to consider their own prejudice, privilege, and contributions to stigma.

Another workshop, “DID: Democracy Individuality Democracy,” Krystale talked about her experience of having multiple personalities (currently called Dissociate Identity Disorder). Her more than a dozen fully formed, compartmentalized identities are “co-conscious,” meaning they are aware of and able to communicate with one another. They continuously negotiate relationships and control, and so have provided her with intense practice in navigating the outer, social world. As she explained, her multiples formed in response to early childhood trauma.  Notably, this all sounded as far from disordered as possible. Rather, it seemed structured and meaningful, or as she called it, a “complicated brain ordering system.” While Krystale’s experience may register as “maladjusted” or “mad” to most, her creative integration of her multiples challenges dominant narratives and media portrayals on a number of levels. Read her blog here.

Another workshop was led by the Spark Theater Collective, a local street theater team, which first showed a video of one of their public performances. It was a series of vignettes on the connections between historically oppressed groups (i.e. Jewish, Black and brown, undocumented, and LGBTQ communities) and the exploitative role of capitalism and the state in their struggles. Afterward we broke into groups and developed skits around the idea of creative maladjustment in response to injustice, and then performed for each other and discussed. This offered a broader context for the mental/health-focused presentations.

Other workshops included Pamela Spiro Wagner’s account of her experiences surviving the psychiatric system; Sarah Knutson’s community practice known as Peerly Human, a holistic, human rights-based approach to mental health; and a discussion led by Vermont’s Healthcare is a Human Right Campaign on how to effect local and national issues in healthcare.

Creative Maladjustment Day addressed how systems– economic and criminal justice, health and social service – are intertwined, as are the struggles of those who interact with them. It showed how profit-driven, one-size-fits-all approaches strip people of rights, voice, and community in the name of care. Finally, it demonstrated how such systems will struggle to recognize humanity in its complexity and context, the links between medicalized suffering and gendered/racialized oppression, and even the negative effects of their own interventions. As dark as this message may seem, the workshops – and the passionate, engaged discussions they provoked – produced plenty of ideas about how we might creatively respond.

The Hive, too, was an apt host for this event. As a mutual support network that is a product of grassroots organizing and an alternative to traditional systems, it is itself an example of creative maladjustment. And in this national moment of persistent threats to healthcare, civil rights, and human rights, seeing so many people come together to discuss how we can collectively embrace the human condition, change systems, and make our own was profound. As a student of anthropology – and a member of this community – this was inspiration for both research and praxis.

Posted in Jordan, Maguire Fellow in Vermont | Comments Off on Creative Maladjustment Day

Meet the Hive

Brattleboro, a former mill town turned hippie enclave in far southern Vermont, is shot through with rivers, surrounded by green slopes, and views for days. You can see New Hampshire’s Wantastiquet Mountain from downtown, just over the bridge that connects the neighboring states, and the drive to Massachusetts is only 10 minutes. As a New Englander, this is a welcome respite from Dallas summer and a tonic for my homesickness – in other words, an amazing setting for a Maguire Public Service project. Moreover, as a medical anthropology Ph.D. student focused on mental health alternatives (and someone with personal and professional experience in the mental health system), it’s an ideal place to be. Brattleboro is home to a unique, emerging support option, and one that I am fortunate to be working with this summer.

Whetstone Brook running through downtown Brattleboro with Wantastiquet Mountain in the background

The Hive came out of a 2014 community dialogue about increasing local access to peer support (meaning mutual relationships that are non-professional, and are based on lived experience rather than education). It has since grown into a grassroots mutual support network that is free and volunteer-run, dedicated to “creating spaces and infrastructures for people to support each other to survive and thrive.”

It has no financial stakeholders or parent organizations. And while it is kept running by an open group of participants known as “worker bees,” larger decisions are made collectively with input from its roughly 30 community members.

The Hive offers weekly open hours, mutual support groups, study groups, and monthly gatherings/potlucks at either a local social justice center or its own dedicated studio space downtown. Cells (smaller, autonomous support groups) and the Buzzline (an online platform for ad-hoc social networking around any mutual aid requests) give The Hive the flexibility to facilitate support wherever and whenever needed. It also offers a range of workshops and events, recent examples being “Alternatives to Calling the Police,” “Self-Advocacy: Using the System to Your Advantage,” and “Beliefs, Delusions, and Stories: What’s the Difference and How Do They Serve Us?”.

The Hive does not have “staff” or “clients”. It is not “treatment,” nor is it explicitly a response to treatment. It is not even about “mental health” per se. Rather, by not limiting itself to the often pathologizing and individualizing language of mental health (or to community members who have experienced treatment), it allows for connections and ways of viewing life experiences that are social, political, or simply human in nature (for example, one of its early mutual support groups, “Humans Anonymous”). The Hive functions as a complement or alternative to a range of dominant systems and structures as defined by its members – from psychiatry and education to heteronormativity and capitalism – that, while beneficial for some, are insufficient or oppressive for others. Importantly, it offers open-minded, non-coercive support and a space for challenging conversations, all in the context of a constantly-evolving, intentional community.

A flier for the Hive on a community bulletin board

In my first couple of weeks here, I met with the “worker bees” to figure out a list of tasks to work on over the summer. I produced and distributed fliers for the Hive’s potluck, which featured local artist Pamela Spiro Wagner’s “Going Sane,” a multimedia account of how she experienced horrific abuse and destructive labelling in psychiatric hospitals and emerged whole.

I’ve also been working with two worker bees who are developing a training on social justice and mental health, doing research for a timeline on the history of resistance to psychiatry by current/former users of services– efforts otherwise known as the c/s/x movement (consumer/survivor/ex-patient, a name reflecting the different ways that people identify themselves in relation to mental health treatment).

I spent time over the last two weeks collecting information on grants that might help The Hive expand its offerings, putting up fliers for the network around town, and doing outreach to local colleges, drop-in centers, and other like-minded organizations. Most enjoyably, I’ve been attending events and activities and getting to know the folks who make up this unique community.

I’ll post more about these projects (and others) as they progress. In the meantime, check out the Hive’s website by clicking this link, or shoot me an e-mail with any questions!

Posted in Jordan, Maguire Fellow in Vermont | Tagged , , , , | Comments Off on Meet the Hive