“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.

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