Mental Health Recovery Movement

Frictions

“Nothing about us without us.” That’s a guiding principle in the disability-rights movement. It applies to the mental-health justice and recovery movements as well because mental-health issues are often disabilities for those of us who live with them—sometimes because they are truly disabling and sometimes because our cultures disable us, our communities disable us, and those around us disable us because they don’t understand us (or try), don’t include us (or try), discriminate against us (often because of unexamined or dismissed bias), and subject us to their versions of who we are, which happens daily through language and actions and the way real and conceptual spaces are structured.

I bought a clicker, one of those old-fashioned ones that employees at the academic library where I worked in college used to track how many people came in each day. I’m going to use it for two weeks and track how many times I encounter instances of sanism, both in real life and on social media. I started doing something similar last week by making ticks on a piece of paper. But I like the idea of using a clicker in part because it’s an object I can hear and feel as I operate it, in part because it fits in my hand, and in part because it’s a bright color. I have the kind of sensory processing that appreciates those things. The clicker also feels more formal and official, and I can use it even when I don’t have a pen and paper with me, which makes it more practical. I may include notes about each instance, including the context, date, and time.

OK, I actually bought six clickers in an array of colors because they came in a set, but that’s beside the point. You may think that’s too many clickers. I don’t. I’m mildly tachycardic right now just thinking about their arrival. There’s a black one and a green one and a pink one and a red one and a white one and a yellow one. I’m actually trying to humanize myself in this paragraph and the last one because I made some big assertions in my opening paragraph, the kind that make people (in this case me) unlikable mostly because they fall under the information you didn’t ask for that I think you should know category but also because they may apply to you or those you know rather than some far-off “they” that we can all join in both hating and distancing ourselves from together.

“Nothing about us without us.” I take this principle seriously. It’s like no taxation without representation, only it’s like no characterization, no proclamations based on misinformation, no policy decisions, no representations in the arts and the media, no casual or formal conversations, no application of diagnostic labels especially when used in a pejorative manner, and no limited or completely erroneous lay insights without our representation. That means we are centralized, not marginalized. We are present, not absent. We are heard, not talked over, not silenced, not discounted. It means if we say there’s an issue, you listen. You don’t shift in your seat or put up a wall or fail to respond or shift blame to us. 

I’m no longer entering rooms where there are frictions only I appear to see and concerns only I appear to discern, one thousand frictions that are invisible to those who are not queer or neuroatypical or living with trauma or serious mental-health issues. That doesn’t mean those frictions don’t exist. It just means they may not exist for you, and if that’s the case, I’m happy for you. I’m glad a room is just a room is just a room. But your inability to see what others see, feel, and experience in those rooms—your failure to cultivate literacy about the things those who are oppressed and marginalized have to see in order to survive every day—is part of why rooms continue to not be the same rooms for you that they are for others.

These rooms are exhausting. Click click click (click click). If in addition to instances of sanism, I count instances of trans erasure (click), ableism (click), neurotypical bias (click), discounting of women and those who are female-bodied (click), jokes about diversity (or the lack thereof) in a space (click), and more,* there will be no end to the clicking in too many rooms, even rooms full of poets.

It’s impossible to know which rooms will be full of frictions. I’m trying to figure out what clues I can look for ahead of time and to develop a matrix I can use so I know when to call any given room quits. I no longer believe I can change hearts and minds with my presence, my words, or my work. I feel like, more than ever, I’m in a box called “crazy” and that terrifies people, no matter how I live, what I accomplish, how I treat others, or how wonderful folks think I am before they learn I have a DSM diagnostic label or that I’m queer or that I’m neuroatypical in numerous ways. I’ve seen that semipermeable membrane more times than I can count: the one where inclusion becomes exclusion and being part of becomes being removed from.

I feel like my attempts to address frictions only lead to more frictions, many of them in the form of irritation, denial, resentment, and even fear and disgust. But I will do what I can until I realize I can’t do any more. Then I’ll leave before I accept my own erasure and even start erasing myself. I can’t abide that or any other form of complicity.

I’ve mainly seen this level of friction in Utah. At least in other places, my experience has been that I become more human when I talk, when I write, when I take part in things. Of course, I was largely in the closet about my bipolar until two years ago. That may be part of why people accepted me as a human being and not as an amalgam of their stereotypes, biases, and misunderstandings about bipolar. Who knows what those places are like now, in this new world that has us all doing the work of marginalizing and dehumanizing others on some level.

The rooms with poets are the ones I must approach with care above all the others because I need to believe in poets, even if that belief is misguided. I’m not ready to let go of that yet. I know better. I think I know better. I want to know better but, more than that, I want to be wrong. I want to believe in poets the way some people want to believe in God. It’s like that for me.

I also can’t help but see something else in those rooms, wherever they’re located: a kind of arts-driven traveling medicine show meets multilevel marketing network. It’s not quite either of those things, but it does feel like a system that created itself and now uses its existence as a way of validating itself, one that enriches the few and relies on the many, and one that’s unhinged from actual oversight or governance by the institutions many of these poets actually work or once worked for, which means those institutions will not act based on anything that happens, up to and including sexual assault, in or near those rooms. It’s hard not to see it like that, especially after some of my personal experiences in such rooms, which makes it even harder to find spaces that are safe and poets who are doing good work in those spaces.

—

* I’m just listing ones I’ve encountered recently.

The Loneliness of Recovery

I used to think to be not alone meant / never having to walk through the high wheat / or struggle in the water.

— Allison Seay

I am standing in the high wheat. Field with Sheafs, by August Haake (1911–1914), oil on cardboard. Image used in accordance with U.S. public domain laws.

When I was a teenager, my mother’s best friend came over one night after a long absence from the weekly happy hour my mother hosted. When she arrived, the friend was serious, even somber. She stayed just long enough to tell my mother and their mutual friends that she wasn’t coming back to the group because she had quit drinking.

Couldn’t you just come and not drink, someone asked, flummoxed by the surprise announcement.

No, she said. And I can’t be around any of you again, not while you’re still drinking.

She explained that being around people who drank would jeopardize her recovery. She couldn’t be in that physical or psychological space anymore. My mother didn’t understand, or maybe she understood but didn’t accept her friend’s decision. This was, after all, the woman who had been there through everything with my mom. They’d known each other for more than thirty years. This woman even picked out something for my mother to wear to my father’s funeral. I remember her bringing a selection of outfits home for my mother to try on.

Nothing black, my mother had insisted. I hate it when widows wear black at funerals.

Her friend complied. She fanned out half a dozen wool and satin pieces in beryl blue, emerald green, and ruby red—the rich colors of a painted landscape. My mother sat slumped on the edge of her bed, barely present.

Get up and try these on, her friend coaxed.

Her concern for my mother was evident. It was one of those defining moments in a friendship. Through death, they had become even closer—friends for life, or at least that’s what everyone thought at the time.

After her announcement, my mother’s friend rose and walked purposefully through our paneled den, the one with the mirrored wet bar my father built before his death. She reached the thick cedar door and let herself out.

Empty Space

There are many differences between the alcohol recovery model and the mental health recovery movement. Still, situating myself within the recovery movement feels similar to leaving everyone and everything I’ve known, the way my mother’s best friend had to all those years ago. For one thing, there isn’t a recovery-oriented support group in my area. I don’t feel comfortable at local support groups that follow the disease model, suppress or dismiss research that challenges that model, treat the DSM as authoritative, teach people that medications are the best and often only option for managing their assigned illness, accept funding from pharmaceutical companies, and act as mouthpieces for those companies.

I’ve tried to take part in those groups—to create a space for myself and my view there—and I’ve been met with everything from dismissiveness to outright disdain. For me, they are not places where healing can occur. Rather, they are culdesacs that lead to feeling, and learning to be, what Lewis Mehl-Madrona describes as “forever ill.” In Coyote Wisdom, he writes:

On the down side [sic], support groups for particular illnesses sometimes encourage stories that keep people sick and support them in seeing themselves as ill. People who absorb these stories can come to define themselves as forever ill. A healing story needs to challenge their membership in the community of sufferers.

In my experience, label-specific support groups don’t tell healing stories or encourage peers to create those types of stories for themselves. Instead, I’ve heard group leaders refer to their own mental health labels as “awful,” “terrible” and “horrible.” I’ve seen peers internalize that language and mindset. This does an incredible disservice to the community and is, in my opinion, contemptible. I won’t set foot in those groups anymore because of the culture of self-loathing they cultivate.

Recently, I ran into someone from a group I used to attend. Though it was wonderful to see him, I wasn’t sure how to pick up where we left off more than a year ago. My DSM diagnosis has changed since I attended that group, but that information isn’t important because the DSM isn’t an accurate or helpful classification system. Whatever label I do or don’t have is just that: a label. My thyroid disease has also been addressed, but explaining how that affects my well-being is taxing for even the most attentive listener. So a silence opened in the conversation, like a crevasse in brittle ice. I stood on one side, he on the other. I care about him. I also care about myself and need to do what’s best for me, which includes walking purposefully on my own path, the one that leads to healing. Now I understand how space forms between people, like it did between my mother and her best friend.

Hello, Out There?

There are like-minded people in my area, and I’ve had a difficult time connecting with them. Often, when I reach out, I don’t get a response. I know survivors experience frustration, exhaustion, burnout, and a host of other issues related to trying to have their voices heard while also caring for themselves. Nobody in the recovery movement owes me anything, and I don’t want to take time or energy away from their important work. At the same time, it’s hard to go it alone when I know there are others in town who feel the same way as me. I like to imagine us coming together in friendship and shared purpose. (That’s my internal idealist talking. I’m trying to find my internal realist, but so far she’s eluded capture.)

I’ve had difficulty with recovery-oriented online support groups as well. Members seem to spend an inordinate amount of time fighting with one another, suppressing individual voices, and creating caustic environments in other ways. It’s exhausting to take part in those groups. I often come out feeling worse than when I went in. Online groups also tend to share a great deal of misinformation about mental health, most of which goes unchecked. There are perspectives and opinions, certainly, and those should be respected. But sharing inaccurate information doesn’t help anyone.

Whether in person or online, it probably doesn’t help that, in addition to being an idealist, I’m sensitive, introverted, and have a low threshold for interpersonal strife—either experienced or witnessed. Still, I’m here. I want to speak, write, and act in accordance with what I value, which is a model that promotes well-being over ill-being, individual approaches over generalized protocols, and healing over harm.

I’m over here in the high wheat, in the water. I will stay here even if nobody joins me.


Aside: Reaching Across the Crevasse

One way the mental health recovery movement differs from the alcohol recovery model is that there’s really no room for leaving anyone behind. That silence I felt when talking with my friend recently? I decided to try to connect with him to the best of my ability. He’s my people. Everyone with lived experience is my people, and I am their people. I can’t forget that. While I do need to distance myself from the disease model and the “therapeutic” frameworks that fall out of it, I don’t need to distance myself from anyone who’s open to where I am coming from, even if they remain on the other side of the crevasse.

In part, I told my friend that I am looking at well-being as opposed to ill-being these days, and at a mental health model that supports everyone (regardless of DSM label or lack thereof) having the tools and supports to live meaningful lives. I added that I believe we can all heal from trauma, adversity, and distress—which comes in many forms and touches most of our lives in one way or another. Finally, I said that I don’t think the medical system (physical or mental) goes far enough in not just treating illness and ill-being but in showing us ways that we can thrive and experience well-being.

I guess that’s my new elevator pitch, though it’s a little long. I’ll work on it.