I started this as a post to maybe go up on Mad In America, because I haven’t posted there in a long time, or rather they haven’t posted the things I have submitted for posting in a long time. Oh, well…probably ’cause I go on and on.
I figured I’d just skip the step of submitting for posting and then dumping it here, and just go ahead and dump it:
In my last few posts on Mad In America, I was at the point on the patient-survivor-peer-recovery-advocate-artist-activist-what-the-hell-do-I-want-to-do trajectory where I was dabbling in naive collaborative multisectoral organizing and talking a lot about fine lines in what we advocate for and to whom, with whom.
The work of changing systems from the inside out, presenting and implementing new ways, inspiring and compelling change by virtue of the work that one does within the structures of dominant public systems is important and it seems like a good enough idea to learn the ways of what one wants to defeat, to learn how what one wants to deconstruct is put together, what rules and laws and persuasions and norms and…ideas…hold these assemblages of human services together.
I’ve spent months thinking about blog posts about the myriad motivators and barriers to advocacy and activism among folks who identify as survivors of the systems they are seeking to change. I’ve had too many emails to really spend much time on writing.
I hope that I will start writing here again. I’ve sent in some essays, but they were long and inspecific ramblings on things like madness as a complex system and a partial personal history of mental health crises that occured in relation to clumsy, desperate, and ill-informed efforts to simply change my life.
Things being what they are in the world of email glut and preferred-length-of-blog-entries, they never went up.
I posted most of those writings, or versions thereof, on my personal site: http:/proofofgodandothertragedies.net
– a blog I started about five years ago, right when I started to lose my mind in that way that I did.
The fact that I have this record floating out there in the ethers, well – I am beginning to understand that it’s a sort of glass ceiling in the sanist world of high-stakes mental health advocacy.
I can’t tell you how many times I have laughed at the thought that when being vetted for things like speaking at NAMI meetings, a google search of my name pulls up personal blog posts about being a spy.
I have known that, if I ever really wanted to be a mental health advocate that people took seriously, I would have to clean up my digital footprint, take down my blog, where I post whatever I want to, saying whatever I want to say, where I sometimes try to prove God with clouds and throw syntax to the wind.
May the opinions of mental health bureaucrats be damned.
I’ve had to think a lot about what my own motivations in wanting to be a “mental health advocate” were, and why it was so damn hard to go and be in those meetings sometimes, to figure out who was an ally and who thought I was crazy, to wade through the hundred different felt realities that come up in rooms where people are talking about things like mental health service delivery and people with mental illness.
I wrote pages upon pages of forced, stilted language, concisely outlining this strategy and that strategy in the hopes that people might be persuaded to help to do something that might actually change things. I stayed up late, trying to find the language to rally enthusiasm, exhausting my energy in efforts to inspire other people to gather up and make something happen. I agonized over emails, reading them over and over again, missing typos, hitting send and feeling the swift rush of not being good enough.
Every day, I was aware of the pernicious irony that – in my process of recovering from psychiatry – I had structured a life that still held mental health at its core, though the relationship had changed, this matter of “mental health and what to do about it” is still a central theme in my thinking about what defines my life and purpose.
When I was speaking to my supervisor at the state-funded mental health organization that I do part-time work for, about my recent clarity around the thought that, “Hey, maybe it isn’t such a great thing for me to be in positions where I have to appeal to mental health program managers and policy makers and where I am required to seek their approval?” I brought up the very real, and very deep-felt sense of what I called, in the moment, ‘moral obligation’ to do this work, to be a part of the change I want to see and to use my experience in ways that helps other people.
I told my supervisor that sometimes I have the problematic thought that I am fated somehow, bound and beholden to universal forces, to do this work. I think that might be true, but it may not be healthy for me – that’s what I said, healthy for me – to be thinking that there is some universal plan that involves me working tirelessly for this one specific organization, or that some godforce is requiring me to put on nice shoes and lip gloss to smile earnestly at mental health bureaucrats, speaking in pleasant, measured tones while my own voice screams in the back of my head:
“How are you so calm, so slouching in your chair while people are getting held down and drugged in your program? Why are you smiling at me so smug like that? You don’t even know what I’ve lived through! You don’t even know how my story. You don’t even know how smart I am, how brave I am.”
I could tell when people were thinking about me as “a peer,” or as “a person with a mental illness.” I went into their meetings with my tattoos covered up as best they could be and my hair smoothed down. I sat up straight and listened politely. I felt odd about myself, ashamed at feeling proud that I could do those things, that I could be an ‘effective advocate.’
Here’s the rub:
I couldn’t help but to be aware that it was only because of sheer luck and privilege that I was able to pull off getting past a couple of gates. People who hold power, people who hold meetings, they will let you come, but they may not listen to you, not unless you play by their rules and talk in their talk and appeal to their interests, be they profit or ego. I was able to figure out how to use social entrepreneurialistic tactics and my social oddball survival skills of observation, analysis, and self-modulation for the sake of social safety to make myself reasonably socially acceptable within the context of mental health planning and strategy meetings with lots of white people.
The rub continues:
In trying to figure out how to socially and occupationally navigate participation in the mental health system as a survivor-advocate and peer support specialist, I had to learn how to modulate my absolute outrage at the absurd insult to humanity that modern human services represent. I was able to use some of the skills I learned through psychosis – holding multiple realities, compassion, the ability to take other perspectives, resilience in the face of daunting adversity – to keep myself in a mindset of learning, of inquiry, of cautious exploration.
I was able to go to college, and am comfortable with reading and have gotten to spend time with people who will talk with me about things like social theory and power. I understood the concepts of historical context and evolution. I also understood how to interact with white middle class Americans, because I have had cultural privileges that had afforded me the opportunities to learn how to appeal to some segments of the powerholder population.
In spite of the personal skills, attributes, and characteristics that eased the gates open, it was still tremendously hard to imagine what it would require for me to actually be “an effective advocate.” My personal glass ceiling in that world reflects sanism and patriarchy. I refuse to edit, amend, or censor myself in my personal life or to compromise my art forms or the truth of my story.
I have tattoos on my palms that I cannot hide. I am an “impetuous woman” with a scar on her arm and scuffed shoes.
This is a thought that blows my mind:
If mental health advocacy is this hard for me, if it is this triggering, this futile-feeling, this conflicting and baffling, even with my years of experience in non-profit and community work, even with my developing grounding in organizing theory and practice, even with my “pretty” lip-glossed smile and “nice” Southern manners, my privileged knowledge of language and persuasion…if, with all my privilege, it is still this hard, how hard is it for other survivors to get involved in systems advocacy?
Furthermore, why would they? Is it a matter of having no choice other than to try to change the systems that are controlling and harming one’s life, family and community? Does it matter to powerholders that people take buses across towns and swallow their outrage to sit in chairs and listen to tedious agendas detailing how thoroughly and completely fucked up the processes and practices of systems of entrenched power truly are? Does it matter to them that people are showing up with pictures of their dead children in their hands? Does it matter to them that people who don’t know how to write sit down and take the time to try to write, to tell them, please do something?
…and all for free, at cost even, with time and travel and paper and shoes…to be “allowed” to do work to support new program development or community building, to be “invited” to speak “for a few minutes,” to be “welcome” at meetings where hardly anyone deigns to ask you why you came or to care that you are there, to stay up late and read legislation and try to try to be excited about webinars on beautiful afternoons…and all for free?
For months, I’ve been living in multireality where I am simultaneously a mad artist mother and activist, working on mutual aid organizing with The Icarus Project and brainstorming collective liberation, and
also a pleasant and interesting peer advocate in the mental health system, who is trying to determine what it might take to actually be “an effective advocate.”
Last week, I was lucky enough to find myself floating in the ocean, and as I lay there in the water, thinking about mental health system transformation, I realized that I did not want to be thinking about mental health system transformation.
There are a hundred different ways to do most anything and I have begun to finally figure out that maybe I would be more effective dismantling the constructs and foundations of the mental health system through art, through community, through keeping it fucking real and not hedging my words or my wisdom to appeal to the current powerholders.
I understand that it may be true that I am destined, in the simple mechanics of the age old story of living and learning and growing and changing, to take what I learned as a teenage genius-turned-psychiatric patient, as a suicide-attempt survivor, and as a person who has lost custody of her children due to mental health concerns, and to do something with the knowledge gained in those gauntlets to somehow address the reasons that such realities arose in my life to begin, the forces that create scenarios in which people are harmed and desperate and terrified.
However, there are lots of ways to do this work. Realistically, I cannot – because of my personal issues with fluorescents, linear process and bureaucratic structures – do the work of “effective mental health advocate” without significantly compromising and/or modifying the integrity of my self and whatever might be considered my wellness.
I’m going to an art show in Vancouver for International Mad Pride day, and am working with a researcher from the Institute of Medical Humanities on ethnographic research on radical mental health mutual aid culture and practice. I am learning to play ghost music on the baritone ukulele and going to swordfighting battles with the Asheville Medieval Collective almost every Sunday. A few of the amazing folks I know who also identify as mad mothers are talking about ways we might collectively offer more resources of support and community to mothers and families who might be struggling. I might try to start a letter writing service to answer mail sent to visionary indie rock musicians by people who feel like it’s important to reach out to the people whose songs saved their lives and explained something really important about things like ghosts and beauty and wanting to die but staying alive anyway. I’m spending some time here with folks interested in mutual aid in more broad public spaces, like housing complexes and parks and markets.
In any event, it is my great hope that the mental health system will – indeed – transform, in such a way that every vestige of exploitative medical model abuse is remedied and removed, replaced with justice and healing.
In the meantime, I will be working on justice and healing in other ways.
This morning I woke up and went through the motions of preparing to go to work at the state-funded REC like I do every Thursday. I washed my hair, got dressed. I put food into a bag and checked the time, walked the dogs. Then, about 10 minutes before I left, I found myself immersed in the strongest feeling of not wanting to go, a resolute wanting to stay home. I continued to make gestures toward preparing to go to work, went upstairs, brushed my teeth. Then, went back downstairs and opened a window to put a lightning bug outside. “Hmmm, if I were going to work, I wouldn’t have opened that window.”
I felt incredibly calm as I noticed that it was time for me to leave if I was going to get there on time. I considered the drive, listening to the radio going into the curve at Mills River. The certain spans of southeastern, and then southwestern sky that I am familiar with, the forest, the stoplight in town, the twinge of anxiety as I pull into the parking lot, knowing that I’ll have to be there all.day.long.
I didn’t want to go to work.
A few days ago, I sent a message suggesting that I may not be “in a place” where “it is healthy” for me to be working in the mental health system in the capacity that I am. I sent it to both my supervisors, as I have two jobs within the organization, and heard back from neither.
I sat on the porch, aware that time seemed to be passing very quickly and yet still feeling very at ease with the possibility that, fuck it, I might just not go to work.
“What would that be like?”
I wrote a message. Hit send and thought, “Wow. So, I did that. What should I do now?”
Given that this is a position that I have tried to leave on and off for a solid year, putting in notice multiple times and then staying, because it is not an easy job to leave, I felt as if I had – finally – done something decisive.
Historically, my crises have always had something to do with quitting something – school, a job.
A half hour after I sent to message, my co-workers replied:
So, as I do most every Thursday, at 9:30, I was starting Creative Writing class and then the day went on as days do there, with a hundred million beautiful and tragic things unfolding under fluorescent lights, in the air-conditioning. My supervisors wanted to talk with me and at one point, I found myself explaining that the sense of moral obligation/vocational calling that I feel to somehow contribute to mental health system transformation is powerful and, yet, I also don’t know if this is the time in my life where I oughta be doing that sort of work in any sort of usual way, with the meetings and the emails and the strategy and planning meetings and the policy analysis and trainings, conferences, etc.
Gah, when I think about it – even now – I feel a distinct tightening in my chest.
This is how I practice discernment.
“I have a hard time quitting jobs, especially jobs I love.”
“You can always come back or do something different within the organization.”
What is it about being able to leave that makes the thought of staying easier?
I really think it’s time for me to go, at least for a while. I have, after all, other jobs – though not quite so many as I had last week. On the day that I wrote my supervisors an email about possibly stepping back from my positions, I had already quit one job, a very interesting resource development project regarding self-disclosure practices in therapeutic roles that I absolutely did not have time to commit to.
While I was on vacation, floating in the water and strategizing mental health system transformation, I realized that my life might be very different if I did not have a significant portion of my mind enmeshed at all times with matters related to mental health culture, practice, and policy as these things pertain to broad trajectories of collective liberation.
I mean, what would that even be like?
Next week, I am going to Vancouver for an art show associated with International Mad Pride day, which is July 12th.
I have some art in a gallery show.
This evening, after an especially jubilant swordtraining, complete with perfect summer storm wind and laughter, I talked with a friend for an hour about mad parenting and various projects we are geeking out about. At one point, I mentioned how, over the past weeks, I have been really grateful for all the amazing people I have in my life. We mutually expressed appreciation for just how brilliant, raw, badass, and brave our friends are…and then I said,
“You know, it’s not so much that they are amazing people, doing totally rad work, it’s that…they’re my friends. I have sort of walked around with this thought that, ‘I meet people, we form a tentative friendship, then I fuck up and they aren’t my friend anymore or they don’t know how to be friends with me and then, blip, gone. At this point, I’ve known some of you for a few years, and we’ve flaked out and communicated poorly and had misunderstandings and bailed on projects, but these people are still in my life, because they’re my friends and…dang, I have some amazing fucking friends. That’s such a good feeling, like, unbelievable, unreal…how did this realness happen?”
When I got off the phone, I thought about this space, as I often do…just floating around out here…
I read parts of my last post in Creative Writing today, as an example of a form of creative writing in which one uses language as a vehicle for emptying one’s momentary head and heart, memorializing or noting important things that nobody else but you might care about, and playing with how we might tell the story of a day.
I wonder sometimes about the representation here. It’s awfully h-e-a-v-y sometimes, chaotic, dark in places.
In my walking talking life, the things that end up here are undercurrents, shadows, fleeting snarls that catch my mind. I have never had much use for therapists.
I just email myself.
What’s the point of posting one’s personal notes on observation, experience, and process on a public site as some sort of self-documentary art project and act of sheer defiance?
Well, I think we’ve answered that, at this point.
I have never been keen on the idea that what we show the public must be palatable to the public, that it must make sense and be of an accessible length. I do not exist to make sense to the public, at least not here I don’t.
This is my space.
There are not many spaces in my life where I can talk really openly and easily about the sort of things that end up here. People have neither time nor interest. Well, most people anyway.
I have a few friends who have, on occasion, been happy to talk about clouds, geometry, language, and ecosystemic forces of consciousness with me.
You know what’s super great about this record? It is a paper trail of a thousand plus pages, leading back to the days when I.had.nobody. except the radio and kind strangers and my own version of imagined angels, ghosts.
In any sort of “sane” world, I would put all of this away, tidy up and move on. I do not live in a “sane” world. I live in a world where lyrics and wind and birds and shadows and sense and clouds and insects and homeless people saved.my.life. and I will never.ever turn from the realness of that and the sanctity of the truths that time imparted to me.
So, any job I have must understand this, any true friend I have must understand this:
I still believe that something that loves me deeply plays me songs on the radio sometimes and some certain cloudforms will always take my breath away. I find kinship with strangers, and genuinely believe in the best, most simple sort of ghosts.
Note on Longform: A barrier to my participation in certain modes of media and social communication is that I like to write in Longform. I am not a 400-600 word type of person, not when I have something important to work out. I understand the value of being concise and to the point, linear and accessible, to write for the reader. I also understand that my word-mind leads me to go on and on sometimes. It’s a complicated world and my experience, as a mad person who actively occupies multiple realities, with each reality having multiple realities, well…sometimes it takes a while to work out. I have spent the vast majority of my life trying to make myself accessible to other people and I feel like, at this point, I am inclined to just be myself and I write in longform and mash up emails with essays and poetry. That’s just how it is right now.
Several years ago, I didn’t know if I could write ever again, my mind was so bludgeoned by trauma and psychiatric drugs. It felt like a washed-out landscape, a library flooded. I have been open about the fact that I have been working on regaining my language, and learning how to express things again in the way that I feel is most proficient and optimal. People say, “Oh, no, you seem to be writing quite well.” They do not know that I have my own criteria for being well in writing, the feeling of smooth transcription from thought to word, the joy of deftly stringing words and the glee in the sense of having an abundance of words for weaving.
Other people do not know when I write well.
I know when I write well and, right now, I feel I write well in longform, because I feel joy and clarity when writing in longform.