Stimming at Work and What Makes Me Mad

boat

YESTERDAY

I am in a quandary, a real quandary.

I knew that there were issues with being a Peer. I have read the articles and essays, listened to the conversations…people talking about co-optation and exploitation, the problems of state-sponsored “recovery” models. I understood that there were conflicts between the ethos of Peer work and systems that have words like “severe and persistent mental illness’ built into them as the nuts and bolts holding the whole toxic mess together. I figured out that, in some circles, it wasn’t alright to put Peer letters after my name and in other circles it was desirable. There are a lot of identity politics and ethical tangles to navigate in Peer work, depending on where a person works and what they are expected to do within their job. For the amount that Peers are paid, it is an incredibly demanding position to occupy.

In spite of all that, being a person who really appreciates the idea of transformation and who has a lot of hope for a sensible and compassionate systemic revisioning, I thought I could work as a Peer and feel good about my job. In a lot of ways, I do. As a matter of fact, I like my job…because I love the people I work with and I love what I am able to do within the recovery education model. I can teach classes on things like The Four Agreements and creative writing. I can talk to people about hope in ways that feel like conversations, because they are conversations.

“What does it feel like to you? To me, it’s this sort of warm and bright feeling. It feels sort of like gratitude, but a little different.”

So, why do I feel so hopeless about my job lately?

The organization I work for is supposedly “recovery-oriented,” and it’s true that they have been extremely supportive in many ways. However, it’s far from perfect and I have noticed that since the center began to do medication management, things are different. It’s been a busy time at work lately, with a stressful and noisy open house for Mental Health Awareness Month, which the hospital was invited to participate in, with pamphlets about their behavioral health unit. A couple of clinicians were out last week for a training on involuntary commitment procedures.

More and more, I realize that me working there a couple of days a week is not going to magically change the mental health system and that, for the most part, people just ignore me when I talk about having questions about the role of medication management in recovery education or express concerns about violations of self-determination in things like hospitalizations and Assertive Community Treatment. I am realizing that there is very limited organizational interest in being on the leading edge of recovery and empowerment and that the vast majority of people who work for the organization are just as invested in the medical model as the American Psychiatric Association itself.

All that being said, I feel like it is incredibly important for me to keep working there, because I might be the only person who shares essays on using mindfulness to live more peaceably with voices or ways to self-advocate with prescribers to figure out if medication is helpful or harmful. People need to know those perspectives exist. Those ideas, those practices, help people.

If I wasn’t there, people might not get to read so many poems or talk quite so freely about why they love Pink Floyd so much. They might not have anyone in their lives who is willing to just see them as they are, outside of history and diagnosis, and I don’t want to take that away from people, because I know that it is vital.

Nevertheless, this morning I woke up and wanted to stay home. I wanted to give my dog a bath and clean the house. I wanted to write and work in the yard. As I got ready for the day, I noticed that I was having one of those days where I need to shake my hands, where it feels like I have bees in my wrists, as if I need to stretch something out, work it loose. For me, physical agitation is often related to cognitive dissonance or other conflict within my life, but I am not troubled when I feel like I need to move some part of me, my hands, my neck, my torso, my knees. The movement feels good.  It helps me to figure out what to do.

I know, however, that when I am stressed to the point of physical agitation, I typically need to chill out and stay away from noisy places with a lot of information or I am likely to end up crying and feeling exhausted. So, having to go to workplace that requires enormous amounts of conscientious regulation in communication and reaction is not really ideal on days when my hands won’t be still.

At 7:30 am, the line at the convenience store was long and the music was blaring. I saw on the front page of the paper that cases of horse abuse are going up because people can’t afford their horses and give them away to people who don’t know how to care for them. For some reason, that made me incredibly sad.

??????????????????????

There was a traffic jam for the second day in a row and I had to slam on my brakes suddenly twice. The day was beautiful, all bright blue with low clouds. I wanted to go home and take pictures.

By the time I got to work, I felt like flinching every time a car drove by. I wanted to pace, but I was externally still fairly composed.

I was faced with a difficult decision. Should I go into work and tell my co-workers: “Hey, I need to sway a little while I do my paperwork and, yeah, my hands are doing this for a reason. It helps me to calm down…” or should I try to fake it with a tense smile glued onto my face in a semi-dissociative coping state that may appear variably tearful or slightly shut down?

I knew that if I could just move the parts of me that need moving, then maybe they would quiet down and it turned out not to be too much of a choice.

I explained the situation to my co-workers, with a bit of light humor, trying to be clear that I was okay. I called my physical agitation “something like stimming” so they’d maybe understand that I was responding to what my body needed to do to ease stress and regulate attention.

After a half hour of quietly doing my paperwork and rocking back and forth a little, taking some deep breaths, I was totally fine. I had a very calm, productive and appropriate day of peer support and yet I received an inquiry sent to my personal email stating that “the team said you weren’t doing well” and asking whether or not “I had plans to take care of myself this weekend.”  There was no recognition that I already had taken care of myself and that there was nothing much wrong to begin with. I understand that people care about me, but I don’t think that clinicians get observed, discussed, and checked in on.

Sometimes being employed as a Peer feels like I am trapped within the very ideas that I am trying to recover from. I still exist in relation to other people’s understanding of my “lived experience” and what that means to them. I have realized that it doesn’t matter at all what I term my “lived experience” to be or how I characterize my wellness or what “recovery” might mean to me. As a Peer in a state-funded setting, I will always live in the shadow of the disease model. No matter how I see myself, people still see me as having “a mental illness.”

Because of my diagnosis and the fear-based assumptions that surround it, people continue to see any little variation in my communication, attitudes, or behaviors as being a “symptom” of my “illness.” They worry about me when I am happy. They are concerned about me when I am stressed. They sometimes think the things I need to do to take care of my unique human self are signs of “decompensation.” If I have great idea, it has nothing to do with the fact that I am intelligent and inspired. My very best ideas are seen as signs of grandiosity and utterly dismissed.

Non-peer coworkers can have a bad day. They can be absent-minded or talk out-of-turn or even cry at their desks, and they are seen as just humans. As a Peer, if I do any of these things, the words, actions, or emotions are seen as a part of my “disorder,” instead of just part of who I am and what is happening within my life at any particular time. It does not matter that I do not believe that I have a disorder. There is some cruel irony in that even my well-reasoned belief that I do not have a disorder could be seen as a product of my disorder.

Given that this being-seen-as-mentally-ill phenomenon is precisely what led to the vast majority of my struggles with other human beings and that my struggles with other human beings are a huge part of what I am recovering from, I fail to see how it is good for me to work within an environment where people may view my personhood as being the result of an undesirable disorder.

Where exactly is the line between service and martyrdom?

Which side am I on?

It’s a little bit of a damned if you do, damned if you don’t situation. Double-binds will drive a person mad.

“Yes, as a matter of fact, I am mad. I’m fucking pissed off.”

I have a friend who self-identifies with the diagnosis of schizophrenia and whom I talk with sometimes about things like double bookkeeping and how to keep a manageable grasp on consensus reality.

“You just basically have to understand that, to them, your reality isn’t real. You have to remember that they don’t know what you’re talking about, even if you think they do. Believe me, they don’t.”

We talk about how to keep ourselves safe and how to avoid alarmist hassles, what might not be such a good idea to talk with our families about. We talk about how foolish it is to tell psychiatrists anything about aliens, messages, time travelers, the ghosts of dead relatives or how you feel like you have important work to do.

“Yeah, like, what do you think they’re gonna do if you tell them that stuff? They’re gonna throw your ass in the hospital and give you a shot.”

It’s not funny, but we laugh because the world is so ugly and stupid sometimes.

“Yeah, just keep it between you and the aliens, man.”

I have been thinking a lot lately about ideas pertaining to recovery as they apply to people like me, who still fall somewhat outside of the presumably “normal” range of human experience, interests, and behavior.

However, I cannot ever not be mad…because my core beliefs and affective experience of the world make me mad.

I am mad, for example, that I cannot talk about how I experience the world or what I think about without people thinking I’m “at risk of psychosis.”

That genuinely pisses me off.

Even some allies and supporters lower their voices when I say something that, to them, makes them think I’ve perhaps not had enough sleep.

“I hope you get to take care of yourself.”

“Let me know if you want to talk.”

boy the mother window

I do, actually, want to talk. I want to talk about what it is like to be me and I want to talk about how I experience the world and the meaning I make of it. I want to talk about how I feel and what has happened to me and what I honestly hope for.

I would like to be able to talk about such things, as it is a basic human right to be able to communicate one’s experience of life, without having to preface a topic with phrases like, “This might sound delusional, but…”

There is a certain acid in my voice with the word “delusion” – because my world is REAL and, in many ways, it’s a lot MORE REAL than most versions of consensus reality.

I would like to be able to talk about my experiences and my life in places other than a therapist’s office. I would like to be able to have coffee with friends and calmly converse about what the recent geomagnetic storm did to our brain-minds and sensitivities, or share stories about synchronicities and ghosts. I would like to be able to pause in conversation, and to say, “The strangest thought just came into my mind…”

I want to people to take me seriously, because I deserve to be taken seriously. Yet, when I talk about some of the core elements of my human existence, people just smile politely and nod. Because I am extremely sensitive, I can almost feel them thinking that I sound a little crazy and then I wonder if they also might think I am a little paranoid.

I hate that the constructs of psychiatry and sanity have made it so that people can’t even talk about their lives without getting seen as crazy. I rarely use the word hate. However, what psychiatry and the associated industries of normalcy have done to the human freedom to be human is cruel and ugly in ways that are deserving of the word hate.

7 thoughts on “Stimming at Work and What Makes Me Mad

    • Love you, too, M.
      I needed to get the personal out of my system before I could start to think about an essay on the cultural and economic politics of labor and ability…the structures and functions related to the oppressive, exploitative nature of modern “work.”

      Hope you have a peaceful rainy day.

      xoxo

  1. …not exactly a song for a “peaceful” day, but I need to leave this here:

    Crass, Do They Owe Us A Living http://www.youtube.com/watch?v=Srkm5oWFwiQ
    (“…of course they fucking do.”)

    (Memory: Listening to this song in the car with my mother when I was an angry teenager and being surprised at how offended she was by it. “Nobody owes anyone a living. You have to earn a living. You have to work for it.”)

    :|

  2. Great post! Thanks for saying it how it is. Demonstrating the double edged sword of ‘lived experience’, being under the microscope of mental illness. It’s very irritating, I know what it’s like. Recovery is only a word in the eye of the professional or tool for employability. The psychiatric labels stick like glue, indelible, subjective, inaccurate, nonsense. Social control by another name.

    I’m a psychiatric survivor (1978, 1984, 2002), also a carer of many family members coming through the psychiatric system, since 1970. I’d resisted involvement in mental health activism until recently, being drawn in by what I thought was the peer support human rights movement here in Scotland, 2008, aged 55. However 5 years later the penny has dropped. The recovery agenda was hijacked, by government, the peer support worker roles have been assimilated, by statutory agencies, and survivors like me are silenced by the professional service users whenever we try to challenge the system and rock the boat:
    http://chrysmuirheadwrites.blogspot.co.uk/2013/05/professional-service-users-more-harm.html

    I had an interview last week for a full-time paid job in mental health, with a voluntary organisation, managing a carer project. I fit the criteria, qualification, skill and experience wise. But will they take a risk in employing me? I’ve still to find out. I think they won’t risk it. But I also think that if they don’t then it will be a bigger risk. I’ll be having an impact on what they do, whether inside or outside the organisation. At least being inside they might have some control over what I do. Maybe. Possibly.

    I’ll put this blog post link on my website:
    http://www.chrysm-associates.co.uk/

    All the best, Chrys

  3. Hey, Chrys – Thanks for sharing your voice here! I have been really thinking hard about the ways that the shadow side of “lived experience in recovery from a severe and persistent mental illness” plays itself in Peer work. In this latest little issue with my pay-job, I am seeing the same “everything you do becomes a symptom” phenomenon…even though I am as close to totally fine as I ever am. The really angering part of it is that other people are just as quirky or stressed or tired as I am, and their communication is just as ocassionally flawed at the edge…I mean we work in a state-funded recovery education center in a strange southern town, so the whole world is just kind of crazy. Yet, I am the one who needs to make “plans to take care of myself” and I am the one who gets asked if she’d like to cut back on hours…like I am some fragile, at-risk creature.

    It makes me feel pissed off, because I do some amazing work with people through that job and it’s not really much recognized…we all do good work, for the most part…and it’s not so recognized…because it is a state-funded center and the structure of the system destroys and exhausts good work, exhausts people and depletes them, saddles them in the hopelessness of the state-required diagnoses and the vestigial traits of the medical model…like that if a Peer with a bipolar diagnoses does anything other than be militantly normal and unremarkable, the person must be “at risk of a relapse” or something else insulting and misinformed such as that. It’s the same dynamic that happens in families, where the “person with a mental illness” is seen through the lens of that imagined reality and everything about them becomes overwritten by the constructs of the disease model.

    It is just a horrible, horrible thing…the way people are seen and treated. It is more horrible because – being intelligent and sensitive – we have to watch it happening to us in our lives, we have to live within it…we have to see the way that we are seen, and we have to know that no matter what we do, if it is outside of reassuring banalities and measured talk, if it is outside of mediocrity…it is seen as a “symptom.” We have to see that people believe that we are lacking insight, that they think we do not know we have “a problem.”

    To me, there is nothing more maddening and sad.

    I hope you get the job you applied for…and I hope they let you structure the program however you want and offer you their full support. Keep folks posted.

    Thanks again for being out there. I really appreciate you, Chrys.

  4. I heard today that I didn’t get the job but that’s OK, I’m not surprised and not disappointed. There’s plenty other stuff for me to do although the money would have been useful, seeing as I do most of my activism voluntarily. However money’s not everything, I can manage on less, and maybe the job went to someone who needed the money more and would be less of a risk than me. lol

    Maybe their concern for you at work is because they think so well of you that they don’t want you to be going off sick as your input would be greatly missed? Your sensitivity will be a great asset to the team at the center. No doubt you’ll be saying things that other folk will be thinking but don’t have the courage to speak out about. So be encouraged by their concern.

    I was at a local mental health meeting (in Fife, Scotland, near where I live):
    http://goo.gl/maps/jakOt
    this afternoon which theoretically was about service users and carers being involved and having a voice. Yet when I spoke out the straitjackets were at the ready and attempts made to silence me. For I spoke out about human rights abuse in psychiatric locked wards. They didn’t like it, the statutory agency workers. But I was only telling the truth about what happened to my son in their wards last year.

    Things got so heated at one point that it seemed I’d be frogmarched out. They told me I shouldn’t be using my phone or tweeting or anything. It felt like I was back in the psychiatric ward, and told them so. And then tweeted something, read my Emails, smirked and made faces, folded my arms etc. I rebelled by misbehaving and enjoyed myself even in the midst of being very annoyed at their power play. I’ve got plenty blogs to write about it and won’t be going back to their tokenistic meetings which are only a tick box exercise. I told them so in an Email later on, sending a link to my latest blog post written about some of them, following the first meeting last week – ‘professional service users, more harm than good?’:
    http://chrysmuirheadwrites.blogspot.co.uk/2013/05/professional-service-users-more-harm.html

    I could do with writing another MIA blog post, likely topic will be to do with speaking out and being silenced, the sociologist terms of ‘agency and structure’, about independence, freedom of choice, capacity/incapacity. It seems that psychiatry is all about silencing the voices, keeping women quiet, blocking out pain, drugging patients into conformity. I’ve never known the like in all my years as a community worker in ‘normal’ settings.

    Bye for now, Chrys

  5. Ah, sorry ’bout the job…yes, money would be nice and I definitely hear you about the costs of volunteering. That was a good perspective you shared, that maybe they care about me and want me to be around. That was helpful to me and I know that you’re likely right. (I’ve been there for 2.5 years and it’s a small place, very close.)

    I like the idea for your next MIA post, agency and structure are really useful concepts to describe some of the more insidious effects of paternalistic control, “benign” and forceful.

    I had to edit this post, drop a less-family-content version in its place…mostly out of respect…for myself and other folks who are involved in the circumstances that led to my being a peer.

    Thanks again for posting links and sharing insights. One day, I’m pretty sure that some fantastic author is going to want to publish a book called “Proof of God and Other Tragedies” – and when they search the words…well…all this is what they’ll find. Glad you’re around, Chrys. :)

    Best to you,
    FRR

Is there really anything to say?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s