In my blog, ‘False Arguments, Part 1: Don’t call Me Consumer,’ I had said I would come back to the word ‘peer,’ and… Well, here we go.
Every morning as I drop off my 20-month old daughter to her daycare, I walk by a bulletin board that says, “Cheers for Peers!” in big, bold letters. It offers such ‘cheers’ (each written carefully on a piece of colorful construction paper) as, “Thank you, Sally, for always being willing to stay late!” and “Debbie, Thanks so much for spring cleaning with me!”
Isn’t it funny how none of them reference mental health? No, not a one. Shockingly, their definition of ‘peer’ has nothing at all to do with people who have psychiatric diagnoses, have been hospitalized, or who see themselves as in ‘recovery.’ Instead, they are merely early childhood teachers ‘cheer’ing for fellow early childhood teachers and thanking them for their (peer) support. The key point: Their ‘peer’ness is founded in their shared profession and day-to-day work, not in some singular identity.
Consider briefly this short piece I wrote some time ago for the Western Massachusetts Recovery Learning Community’s newsletter:
“According to www.dictionary.com, the word ‘peer’ is defined as follows: “a person who is equal to another in abilities, qualifications, age, background, and social status.” By that definition and as it has boiled down in our world to its most common usage, most of us have several ‘peer’ groups. Parents, doctors, students, authors, actors, nurses, artists, politicians, baseball players… all are one another’s peers. More importantly, in order to be a ‘peer,’ by definition, one person quite literally has to be connected to another. There is no such thing as a ‘peer’ standing alone, because then, well… whose peer are they?
Strange then, that – within the mental health system and recovery movement – we should be taking on this word ‘peer,’ as if it is the next best word for patient, client, consumer, ‘person served,’ participant, and/or member. It’s strange for two reasons. The first is that no ‘peer’ should be able to stand alone. There should be no such thing as ‘a peer,’ unless there is another ‘peer’ standing next to him or her. No person should be able to talk about ‘the peers’ as some group separate from themselves because it is antithetical to the very meaning of the word. Peer does not mean ‘someone receiving services.’ It means people who exist as a part of a community of some sort and who share commonalities and relationships with one another. It’s ‘my peers’ or ‘our peers,’ if it’s ‘peer’ at all. It’s stranger still because – in this work of recovery and ‘peer work,’ – we talk so often about how healing through relationship is at the core of what we do. And yet, in essence, we have begun to refer to ourselves by a word that originally was all about relationship and now, through our very usage of it, has lost that relational focus.
And so, before we go beyond the point of no return with our usage of this word, we encourage everyone to consider the impact and to remember that, if we use the word as it is defined, no ‘peer’ can stand alone.”
I’m not sure I could say it much better at this point (except that I no longer really use the terms ‘recovery’ and ‘recovery movement’ so freely), but so many people still don’t seem to ‘get it.’ The system persists in creating ‘peer’ roles that are all about someone who identifies as ‘a peer,’ and yet those so-called peers are often set out to do atrocious things that hardly do more than replicate what has been done over and over throughout the years. People I otherwise have great respect for in this work continue to refer to themselves as ‘a peer,’ and to buy into the definition that the term refers to anyone with a ‘psychiatric diagnosis,’ or similar.
The sad reality is any time you create a word that only has meaning in a very specific context and then you start quite literally referring to people as if they were that word, you create more barriers to them moving beyond that context and on with their own life. Sure, it might feel good for a while. It might feel like you finally ‘belong’ somewhere. But if your identity is carefully shaped so that you only feel like you belong within the mental health system or the various constructs that have resulted from its existence, what does that mean for your future? What do you want it to mean?
In truth, in the mental health system, ‘peer’ is supposed to mean exactly what it means for the rest of the world. It’s not intended to be an identity or a badge (literal or figurative). It’s meant to speak to how you relate to one another based on your common experiences. And, by the way, those common experiences in this particular context go beyond simple diagnosis, emotional distress and so on. Those are just the ones that the mental health system happens to be most comfortable discussing. In truth, common experiences between people who have been diagnosed and treated within the mental health system also generally include oppression, discrimination, loss of power, loss of sense of self and more. (But people sometimes start to get nervous, defensive and a little edgy when that gets recognized too loudly.)
Thusly, people who work in ‘peer’ roles are in those roles not just because they’ve ‘been there.’ Lots of people have ‘been there’ in some way – far more than are willing to admit it. No, people who work in ‘peer’ roles are pledging (or, at least, should be) to offer peer-to-peer support that is informed by their personal experiences, is based on mutuality, and assumes shared growth and learning. Calling a role ‘peer’ says (or should say), “I am here to walk this path with you, but only if you want me to.” The person in a genuine ‘peer’ role acknowledges that they don’t have any answers – that there may be no one right answer – but believes in each person’s expertise about and knowledge of themselves if given the support and/or time to uncover it. The person in the true ‘peer’ role may be agreeing to walk with you in the mental health system, but their allegiance is not to the system’s systems. Rather, it is to co-creating the space with you where exploration may happen and your voice may once again be found or strengthened. When they sit in team and administrative meetings in traditional settings, people in ‘peer’ roles are there to challenge the status quo (or help people figure out what and why it even is), and encourage growth all around, not to blend in as a part of the team. Yes, a person working in a peer role can also serve as an excellent example that healing is possible and there is hope, but treating them as if they’re little more than a walking-talking-hope-bearing-story is demeaning and devaluing their true worth. In actuality, they bring hope and belief in human potential not just by sharing their story but by supporting people (both those working in and those receiving services from the system!) on their path toward their own self-discovery.
In short, calling a role ‘peer’ should say less about the identity of the person in it, and more about the way in which they have committed to and been trained to work with another human being.
The state of our system, our language and of so-called ‘peer roles’ is not in a good place. (I talk about this a little more in an interview on Madness Radio that you can listen to here, if you’re interested.) The very misunderstanding and misuse of the definition of ‘peer’ is a part of what is driving this work into the ground. If all so many of us have been advocating for all these years was simply to develop a new title in the mental health system where someone would openly acknowledge their psychiatric history but still do the same old things, what would really be the point? Is this the change that people like Judi Chamberlain, David Oaks and so many others have dedicated their lives to? Where has all our fight gone? Is this a civil rights movement that has been lost?
So many questions with so few answers. Honestly, at times, I grapple with the urge to just walk away from the whole mess. However, in the meantime, in an effort to support movement in the right direction… or to prevent further backsliding… or perhaps just for your own amusement (or horror)… I offer you the following ten signs (I’ve actually heard or witnessed) that you might be missing the point of ‘peer’ roles:
- You are ‘court mandated’ to work with someone, and don’t think that’s a problem.
- You have a ‘caseload,’ and don’t think it’s bad to refer to them as ‘cases.’
- When you hear a provider say something akin to, “Peers are great, because they’re in the best position to convince someone they really need to take their meds,” you agree with them.
- You are responsible for administering medication and writing treatment plans, and think it’s a sign of how far you’ve come.
- You leave all the tough conversations about difficult topics like suicide and medication to the ‘professionals,’ because you’re just there to ‘inspire’ people.
- You really like your name badge and keys to all the locked doors and wear them prominently.
- You not only know what words like ‘decompensate’ and ‘baseline’ refer to (even though one of them doesn’t even appear in your average dictionary), you also use them frequently.
- You’re proud to be a ‘high functioning’ peer.
- You refer to yourself (or anyone else) as ‘SMI,’ ‘SMPI’ or any other system acronym.
- And finally, you think ‘Nothing about us without us’ is probably just some new pop song.
I am a part of the Western Massachusetts Recovery Learning Community and I am proud of that. Our history is based in this idea of peer-to-peer support, and yet we just made a decision to drop ‘peer’ from any and all job titles for many of the reasons described above. In the end, we are all human beings with powerful stories and powerful abilities to impact the world around us.
We are committed to connecting with one another and creating space for learning and growth.
We believe in our own potential and in yours, whatever role you may find yourself in.
We are going to change the world.
It will not be because we are ‘peers.’
Thank you, Sera, for saying this so clearly and emphatically! The absurd use of the word “peer” as a euphemism for “mental patient” has driven me straight up the wall for years and I’m tired of people rolling their eyes at me when I raise the issue. From now on, I will just hand people a copy of this blog post and move on.
Hah, thanks, Darby. 😉 I suspect some people will still roll their eyes at this blog post, but at least I feel a little better for having posted it. 😉
Thank you, Sera, for your considered and thoughtful address of this topic. Spot on, I think. And thank you, Darby, for sharing it with me. I’ve spent considerable time up the same wall.
While I have a range of choices for contextual self-identification I feel each is a necessary tool. However, my immediate reaction to your ‘missing-the-point’ list was the thought that it’s when we stop using the personal pronoun, ‘we.’
I sadly witness various participants use the word peer about their supposed peers to separate themselves. It is certainly used by many service providers and policy makers to segregate themselves from ‘Peers.’
The words we choose have power and meaning. When used thoughtfully they give us power and meaning, particularly when we use them for self-identification rather than other-identification.
Great article, Sera. You were able to put into words for me why I chose to no longer see my “peer support worker.” I was horrified at some of the things he said to me, particularly when he would ask me my opinion and then correct it to realign with his organization’s mandate. Eventually, I came to understand that he wasn’t my “peer” at all and I’ve been doing much better without him.
Thanks, Francesca. Reading your comment and others I’ve received here and on Facebook reaffirms for me how widespread this issue has gotten. Though, there are people and communities out there creating real peer-to-peer environments and relationships, and I’m sorry you haven’t had access. 🙁
I’m relatively new here, I only read “Anatomy” several months ago. But I would like to help people harmed by the psychiatric industry, as I was. I had hypomania caused by a “safe smoking cessation med” (actual dangerous antidepressant). Then the hypomania was misdiagnosed (according to the DSM) as bipolar. And to cover up the error, a doctor caused anticholinergic intoxication with drugs that had up to six major drugs interactions simultaneously, at above FDA recommended levels. But it seems millions may have had bipolar caused in a similar way. I got away from these unethical doctors, and (long story) have been med free for six years now.
Is it true that the only peer programs in the US are one’s that promote med compliance? Given the recent findings on the dangers of antipsychotics, and the reality that bipolar is a “partially or wholly iatrogenic illness,” it strikes me one with knowledge of how to wean others off these dangerous drugs fairly safely might have useful information. Are the US hospitals all still trying to only recommend med compliance for “lacking in validity” disorders? And, please, don’t get me wrong, my research indicates some do claim to benefit from the meds, but I know from personal experience some do not. And this is likely true for most the bipolar children.
Hi there, Thanks for posting and sharing a piece of your story. As much as I think the state of ‘peer’ roles is not in a good place, there are some who are doing it well *and* addressing the medication issue. I know, for example, that the community I am a part of (the Western Mass Recovery Learning Community) addresses medication concerns in many ways. We offer groups – like Hearing Voices groups – where people are able to openly talk about and explore whatever topics they like, including not using medications. We have many books on the topic. Our website offers some resource links on the topic (something we’re growing). People are welcome to talk about it and seek support on it at our Peer Respite or in any other setting or connection that may occur in our community. And we periodically have community events that address the issue. (These events are intended to impact not just people who may be taking medication, but providers as well.) For example, we had Will Hall come in and do a workshop on the topic at one point, and we just had David Cohen come in and do a couple of Withdrawing from Medication workshops in June – one of which was co-sponsored by a traditional organization that has been working hard (and having quite a bit of success) in also creating peer roles that are consistent with peer-to-peer values. And we are not alone. There are other pockets of ‘good’ in the US and beyond. 🙂
So, all that is to say that it’s not 100% hopeless or bad, but there’s much reason to be concerned and I hear awful stories about what people in peer roles are doing or being asked to do on a pretty regular basis.
The moment that you,as a so-called “peer,” put pen to paper and write in a person’s chart, or sit on a treatment team as a regular part of the team, you are no longer a peer but someone who exercises power and privilege.
I’ve come to believe that true “peer work” cannot be done in traditional settings found in the mental health system. The expectation is that you will be just like every other staff person. Staff in traditional settings have no idea what you mean when you say that peer workers must be in the system but not of the system. And in fact, when you state this they give you funny looks as if you’re not on the same page as everyone else, where you should be.
The system has cooptated the peer worker idea and is using peer workers to futher the ends of the system and not the recovery of the individual “patient.” Hospitals make themselves look good, as if they’re really doing the work of recovery, by creating departments of peer workers. Psych hospitals are not into creating recovery, renewal, and restoration. Psych hospital are into warehousing, controlling, and maintaining the status quo. After all, they need people to keep coming back through the revolving door of Admissions to make sure that they have a job. Call me cynical but I’ve tried to be a peer worker in a traditioinal hospital setting for two years now and will tell you that peer workers can only function in organizations created outside of the traditional setting of the system. If, as a peer worker, you actually do address the problems with the so-called “meds” you end up being brought to HR where you will be grilled and then written up, and if you continue you will be fired. The so-called psychiatrists froth at the mouth when they find out that someone on staff has taken a stand against the so-called “meds.” You cannot contradict them or their so-called “treatment” and you cannot talk about alternative treatents, at least not in those terms. When, as a peer worker, you advocate in the morning report of the unit you work on that we quit trying to force people into accepting consensus reality but give people tools and methods to deal with their different interpretations of reality so that the interpretations don’t cause problems for them, staff loudly proclaim that this isn’t “theuraputic” and when you ask who says it’s not theuraputic anger erupts all through the group. Of course, they’ve never asked the so-called “patients” if doing this is theuraputic or not. As a peer worker, if you advocate in morning report for communicating with peoples’ voices, if their voices want to talk with staff, you’re told that this is absolutely forbidden since the voices aren’t real and trying to communicate with them just makes the “patient” sicker than they were. You are “buying” into their illness!
Thanks for being willing to talk about this.
Stephen,
I like what you’re saying but I’m not sure whose doing it this way? Can you point me to some systems/states/counties where people in the system but not of the system are helping others in the system? Are these helpers volunteering their time, energy and efforts or is someone paying them? Is this model faith based and/or affiliated with so-called Peer Centers?
Thanks,
David
The phrase “in the system but not of the system” comes from an article produced by Sara’s organization. Peer workers are not found in many state hospitals and of the hospitals that do have such departments my suspicion is that few probably model themselves on this idea. I can’t prove that or back it up but from what I’ve found on the internet concerning peer workers in state hospitals the peer workers seem to be very much “of the system.” Of course, I don’t know this for sure since I’ve not talked directly to any of the peer workers in state hospitals. There are only about ten state hospitals that use peer workers. Maybe a survey should be taken to see just what philosophies they do function under.
The state I live in is setting up a certified peer specialist program for the state and I keep pushing this idea in front of them. The people responsible for creating the program do not seem to be comfortable with this idea at this point in time. What I know as of right this moment is that they want to set the program up so that they can bill Medicare for services provided by peer workers. This is an immediate red flag since making peer workers chart is a violation of the “mutual responsibility” philosophy that Sara speaks abouthere. You have power and privilege over anyone you can chart about, since they can’t chart about your behavior. Having peer workers chart is very much making them of the system. I don’t know if I’ll have any success in getting this philosophy built into the program or not. At this point I’m not very hopeful but I keep trying every time they want to consult with me. It’s the only thing that really gives a peer worker the ability to actually walk with a resident in the hospital and encourage them to seek the answers they need to their own questions concerning their own restoration in life. Institutions and organizations in the traditional system, especially state hospitals that have developed their own cultures going back many, many years, are not comfortable with allowing people to function like this. The staff in these organizations seem to interpret this as “siding with the patient” when you try to allow the so-called “patient” to open up to their own possibilities through learning to make their own decisions. Let’s face it, allowing “patients” to make their own decisions about their own treatment and lives is extremely threatening to staff who’ve always functioned in a paternalistic, “we need to make the decisions for them for their own good” mentality. Traditional institutions today may shout “recovery” all they want but in reality I don’t think that most of them mean what they’re saying. I don’t think they even understand what true recovery really is. Frankly, I don’t think that they really and truly care. They want to maintain the status quo at all costs and they see the cooptation of peer workers as a great opportunity to do this while pretending to be for recovery.
Sorry I can’t point you to any states, counties, etc. where this is done. What you might do is contact Sara directly. She will know if such things are being done anywhere.
I apologize; I keep typing Sara when it’s Sera. Sorry, sorry, sorry. A person’s name is important and should be gotten right.
Hi Stephen,
So, for what it’s worth, the ‘in but not of’ concept is actually one that I’ve taken from our state’s Certified Peer Specialist training and may even have been first born in Georgia (as Massachusetts took a lot of it’s material from Georgia, initially). That said, I think a lot of people use the phrase and yet haven’t really explored what it means (including people who’ve been through the CPS trainings in various states where it is used, and including those who fund the trainings, and even some who teach them… oy!). I’d say there’s an epidemic of simply not understanding what on earth ‘in but not of,’ mutuality, and the integrity of peer-to-peer relationships even means… If we could tackle that issue successfully, it would go a long way, I think.
I’m with you on the Medicaid billing business… Most of the states that are adopting these Certification processes are doing so with billing in mind, and I think it is absolutely inevitable that the roles lose their mutuality and integrity once that happens. The presentations I’ve seen that come out of states where they’ve been successful at medicaid billing (e.g., Arizona, Georgia, Pennsylvania, etc.) for these roles has always serve to support that belief.
-Sera
Hi David,
I think it’s rare that this is happening successfully, but as I mentioned to Stephen, I’m aware that it happens in some places. Honestly, I think a much more sensible model – if we are to continue with this whole idea – is to have people in peer roles who are employed by an independent organization (such as a Recovery Learning Community or what have you.. provided they really truly ‘get it’) who is responsible for their training, supervision, hiring, etc. who then is able to send those people into the traditional environments…
That allows for a number of things… First of all, it allows for there to be a much clearer reason for those people not to be put through all the awful traditional trainings without much of a fight. It supports hiring someone who’s really on the right track, rather than what happens in so many environments (where people seem to often either hire someone who won’t rock the boat or someone who that organization provided services to and hired for that person’s own ‘rehabilitation’ and who isn’t really ready or had the opportunity to figure out if they want to do that kind of work)… It supports the person getting the right sort of training.. It supports the person in being able to feel a part of a team and not along withOUT that team needing to be made up of traditional providers… It provides for people who are in automatic ‘back up’ roles when the provider organization wants the person in ap eer role to do something that doesn’t fit with the value… etc. There are downsides, too, but I think it’s a much more viable structure to maintain the ‘in but not of’ aspect.
Hey Stephen, Thanks for reading and posting. The picture you paint is pretty dismal, but unfortunately I think it’s accurate more often than not. I will say that I’m aware of a few very isolated areas where it seems to be better. There’s one traditional organization in Massachusetts – for instance – that has really been able to hold their ground in not having people in peer roles participate in conversations about people without them present, does not touch medications, does not touch notes, does not read files, etc. They also offer hearing voices groups and we often collaborate with them to bring events like the recent ‘Withdrawing from Medication’ workshop that we offered to people in that part of the state. They give me some hope, though they certainly aren’t perfect either. 🙂
It sounds really exhausting to work in the environment you’re working in, and it’s impressive that you’re holding out and have such clarity in your own vision of what should be!
-Sera
Sera, I don’t know what ‘decompensate’ and ‘baseline’ refer to in context of mental illness. Seriously, LOL. Could you tell me? I’m completely off on lucky number 7.
To fuss about words a bit more, here’s a quote from your article:
“And, by the way, those common experiences in this particular context go beyond simple diagnosis, emotional distress and so on. Those are just the ones that the mental health system happens to be most comfortable discussing. In truth, common experiences between people who have been diagnosed and treated within the mental health system also generally include oppression, discrimination, loss of power, loss of sense of self and more. (But people sometimes start to get nervous, defensive and a little edgy when that gets recognized too loudly.)”
Just to point out how difficult it is to use words, the words emotional distress for example: all the things you rightly mention that people get evasively nervous, defensive and edgy about, when they are recognized too loudly, ARE actually causes for emotional distress. Which makes one wonder what they are talking about when talking about “emotional distress.”
So maybe we can add number 11:
11) You think emotional distress is about whether you’re “normal,” rather than wanting to be normal might have caused it.
Or even add 12:
12) You think emotional distress is caused by other people that aren’t “normal” enough and jar in social settings.
And as diagnosing goes: somehow, I don’t think that “wants to be too normal,” as a symptom, if put in the DSM, would help either….
Or
“Is scared of the color purple”
Or
“Is terrified of anarchists and/or anarchy.”
In hopes this doesn’t make too much sense,
(Nijinsky)
Hey Nijinsky,
You’re absolutely correct that oppression, discrimination, etc. lead to emotional distress… Of all ideas about which people working in the system tend to get most edgy, the idea that THEY are the cause of much the problem – regardless of any good intentions – seems to be really hard for people to swallow.
There’s a line in our film, Beyond the Medical Model, that I really love where Ruta Mazelis talks about creating space for people in provider roles and people who have been diagnosed needing to create space to come together and grieve and heal….I wonder if/when we’ll get there. 🙂
As to baseline (what we pretty much expect out of you day-to-day, no cause for major concern or sending you off to the hospital!) and decompensating (falling below ‘baseline,’ cause for concern, alert, alert, alert!)… These are at the top of the list of terms that need to be dumped by all.
I was once facilitating a training on language and no one in the room (in spite of the fact that most of them worked in traditional settings)knew what the word ‘decompensating’ meant. I thought for a moment, “Maybe there’s been progress…” Until I offered a definition and someone said, “Oh, you mean decomp’ing!!” And the rest of the class responded with an, “ohhhhhhh! Yeah, I know that word!” Sigh.
-Sera
Just to let you know (a word is a word and if someone said googoo gaagaa in context that has as many meanings as any of them), the association I had with baseline was that it meant something like flatline; what happens when a heart monitoring machine goes flat and there’s no heartbeat anymore. Which is basically what’s expected; to show no real signs of life, I guess. And decompensating (or de’comping) this I thought actually had to do with “overcompensating,”…..I didn’t have the association with baseline until you told me what it means, but I did with decompensating, before you filled in the jargon’s use.
It’s really the system that’s overcompensating. I’ve heard the term “non-reality-based” as a symptom I supposedly had, by a social worker. This fortunately wasn’t in any setting where she had any control over my life, she had been teaching “yoga” at Parks and Recreation. I had said something that was a bit off base (LOL….oh yeah… “baseline”) and she didn’t want me in her class anymore (which was actually a solace, because she was a terrible teacher, and completely misrepresented yoga turning it into a chase scene rather than the healing modality it is). And she literally turned EVERYTHING I had ever done around, was she looking for something.
If I went out the same door everyone else did, and she happened to have gone through it as well, I was following her to her car (and I never got anywhere near her car but always went straight for my bike, and I think only went out the same door as she did maybe twice of the umpteen times). If she had mentioned that she had bought a whole bag of chocolate bits in a moaning tone, and I mentioned you could put coco powder in your oatmeal and still get the same buzz you get from chocolate but without all the sugar, she said I was mad at her for eating too much sugar (and started going on about her doctor saying she needed to cut down her sugar intake). If I was talking to her after class about yoga (which she invited everyone to do) and she had a bad posture, which caused me to respond by straightening mine up to show you don’t have to stand that way, I was physically trying to intimidate her, weighed like 50 more pounds than I do, an inch higher; and intruding into her “private space.” If I came to class and went to the only still available space which was right in front of her, I was getting too close to her. If I had a back ache and couldn’t do all of the exercises (still did more than 80% of them), according to her I didn’t do 80% of the exercises and spend the whole time staring at her. If I actually watched her do the poses, when I was trying to figure them out (it was difficult to listen to her explain things because she had such a pretentious patronizing sing-song voice), then I was staring at her all the time. The only way I could follow what she was doing, because she was going so fast – and this was supposed to be yoga and was more like a Richard Simmons workout – was to watch what she was doing and do the exercises at the same time, and so her “friends” all had told her that all I did was watch her. Actually trying to do the exercises counted for nothing apparently. And trying to see what they were was even worse.
Because the exercises were such an intrusion on the relaxed hum that yoga in it’s true form is meant to be (and she actually did many of the actual yoga exercises but went too fast, made them out to be almost like weight training in how they strained the muscles); after class I would slow down for awhile because I had to ride my bike home, and I was still coming down from her whole class, and my muscles were still oscillating with a nervous trill. She often would be having conversations with people (and I was always getting my stuff together slowly, I had to put my jacket and mittens and shoes back on, roll up my yoga mat and maybe just stood or sat there calming down); and then she says I was “closely listening” to her conversations. I guess I was supposed to be deaf, actually. I actually was quite amused at times, because all my friends are basically just living at a “baseline” level. That is, they just have their basic needs, don’t go on vacations, don’t have cars, mostly. And here this was this character like out of a book that was so pretentious in all of her interactions: model for how it’s supposed to be that only goes with A Disney Movie or the McCarthy era, I couldn’t help but be interested in what the heck was going on. The same with how she did yoga. Her upper arms were way too developed, made her look a bit like a thug; it also put her posture and most of her poses out of kilter. She also constantly did a routine that moved from downward dog to getting up and bending down and touching your toes; repeating that rotation like weight training.
I have never in my life heard so much nonsense, except I hear it from my friends every day. And so I discovered what they had been through when they were “committed,” and what they had to deal with with their various case managers, social workers, psychiatrists and all.
The thing that I had said that was a bit off-base or confused (and it wasn’t even to her) I won’t completely go into; but I’ve received attention from actors (and all the way up the scale); because apparently a vulnerable “schizophrenic,” who just wants to experience life and has this not-inhibited respond to it (and also talks about having memories of the dancer whose name I use here, which has “celebrity” status), this is attractive. That’s who I was for years. And it’s a big role in Hollywood, the emotionally disturbed “crazy” person. And this gets to you, actually. Actors that can do the role of a schizophrenic (and actually also a gay person) that in Hollywood no gay person could do, let alone a “schizophrenic.” And what can be rather uncouth, insensitive and presumptuous behavior that goes along more with their image as a media figure than who they are. So, I was a bit confused about something that went on, thought there was this whole intrusion into my life; was actually paranoid about it for one day, which I realized the next wasn’t what was going on. But this “yoga teacher” had made such a fuss about it (and such a construction of untruths) that I got a restraining order against me, and wasn’t allowed to take classes there anymore. No you can’t be confused about something for a day (especially if it’s only a day, and you don’t believe it’s a sign of a disease). And all of that is of course so confusing, and so exhausting to try to figure out: I was left in a space where I couldn’t make much sense out of it or know how to respond.
What’s the most interesting is that the actually “confusion,” when I was making things out to be something that wasn’t really completely going on: it has quite fascinating elements that are as illuminating as a novel. This”yoga teacher” and her associates were making such a ridiculous bunch of paranoia out of anything I did that it was like some Hollywood chase scene with stereotyping just to cause the adrenaline rush (and it was supposed to be a yoga class, with the teacher causing the whole chase scene instead). Since, I’ve discovered things about yoga, and simple positions I made up on my own, that I couldn’t have slid into were I taking this “class.” Oh, and that’s another thing. I respond to stress in a way that I wasn’t always aware of – isn’t baseline all about stress also: do what you’re told or….?. And I actually got bad eczema while taking her class, which caused me to skip a few classes. In the beginning, I also couldn’t make a few classes.
I had taken yoga classes before that from someone who became a good friend, he actually picked me up in passing and took me to a Hindu service; and we’d talk all the time. I also gave him a CD of my music, my compositions I played on the piano. My music actually is in line with yoga, in how it is. I had offered her a CD of mine after the first class (I would have offered this to any yoga teacher; and all sorts of people have my CDs, a lot of the bus drivers, a convenience store owner who had to get a new copy because her sister wouldn’t give her’s back saying it was the only thing that could get her to sleep at night; all sorts of friends. She said she couldn’t take people’s gifts, although she offered to play it during class, which I declined because I didn’t know if I could concentrate; I might get distracted hearing things I thought were wrong about my playing, I thought. And then, after this, when I couldn’t catch the bus because the bike rack was full the next couple of weeks, she said in the report that I was resentful she didn’t take my present, and skipped a couple of classes (it was the bus). And when I had really bad eczema, and also skipped some classes because of this; it was the same story.
She had mentioned (she works as a social worker at a hospital) what pains she had because of the vaccines she needs to take every year. And I simple asked the question as to whether those vaccines were as helpful as they say they are. She actually said she didn’t want to have a discussion about that, when I simply said I think you need to look at what the other side says about vaccines (nothing more) she proceeded to argue (which she said she didn’t want to do) and then said that I skipped classes again because I was resentful. She also said she had said all sorts of things she never had said. If she was having defensive thoughts (clearly based on stereotyping and paranoia) she felt free to fill in things she had never said, as if this is some reality that never happened. One can only wonder whether she’s on something to facilitate this. At the end of a yoga session you usually have 5 minutes where you relax in child’s pose or just on your back. We were doing this, and I was thinking about going to a store where they have these really big cookies, afterwards. She actually said to the whole class: “Don’t think about what you are going to do after class, you haven’t left yet, you’re not concentrating.” So, I actually didn’t go to this store to get a big cookie. And it’s because of this I said something about putting coco in your oatmeal (after she was whining about buying chocolate). That way you could skip the sugar. I was trying to tell her this, she said she didn’t remember about saying she bought chocolate; and then the next class was getting ready to start, which she pointed out. I was a bit perturbed about myself, because I had started running my mouth, while there was another class getting ready to start, so I looked a bit annoyed. Then a got a bit of a gist of how coy and pretentious she was being, for a moment; and I was further perturbed for a moment; but I shook that off and just left. This later turned into that it was mentioned how scary my anger was, she felt I was in her personal space, had told me to back off (she never said that at all, what she had said was that she didn’t remember saying she had bought chocolate); that I was mad at her for eating too much sugar (I was just sharing something, couldn’t care less how much sugar she eats) mentioned that her doctor told her to eat less sugar and was surprised I paid that much attention (apparently she had mentioned the doctor’s advice to someone, if even that is true, I didn’t know anything about this); and that I had intruded into a conversation, which she also said about me simply asking whether vaccines were as helpful as they said they were (which was that she was having a conversation with someone else right over me: I was in the spot in between them, in the class where everyone has their own spot, their own personal space). It also happened once that I had a personal thought during a quiet time during class, and started tearing a bit. And then one of her “friends” actually saw this, and says “and he starts crying.” Now mind you, that’s the kind of thing they say to boys all the time, as if they aren’t allowed to have emotions. Or anyone. I didn’t even know what this was about. I didn’t know this paranoid “yoga teacher” had nothing better to do with her friends than act like I was interested in her in other ways than as a teacher. Which was a mistake to begin with, being interested in her as a teacher. And she also actually said she was scared that I would follow her home to her house (!?!?!?!?!?!?). I’m not even heterosexual in orientation, to begin with. Being friendly, trying to share insights and a CD really doesn’t qualify for a stalker, I don’t think. But if you’re confused for one day, the sky’s the limit. It’s clear that she and her cohorts spent an incredible amount of energy trying to make things going on that weren’t; she can look in her little computer as a social worker and see I have a “diagnosis..”.
And clearly I’m not “committed” enough to “non reality based thinking.”
I’ll look up the definition of “Decompensate:n.
1. Medicine Failure of the heart to maintain adequate blood circulation, marked by labored breathing, engorged blood vessels, and edema.
2. Psychology The inability to maintain defense mechanisms in response to stress, resulting in personality disturbance or psychological imbalance.
Wow, it does have something to do with leading towards “flatlining.”
And this stuff is in many ways really mild, what I’ve been through. You wouldn’t believe how her report reads either. Like some sort of insecure high school student (incredible lack of grammar and content) rambling on about someone she and her friends think is weird, and he deserves all of the lies because he just shouldn’t be weird. To end up in an asylum, having your brain chemistry altered so you can’t think anymore, lose your freedoms, end up in a foster care facility…….This is more like what “Nijinsky” went through…..and MOST of my friends…..
There is the word friend also, in contrast to “peer.”
Nijinsky
Heya, Thank you for sharing your story. It’s incredible how much can get twisted… and how quickly… Once someone has been stamped with the ‘weird’ or ‘crazy’ stamp! Precisely the same actions can be interpreted on extremes, as you’ve clearly experienced and shared here.
I’m sorry that that has been a part of your experience, and continues to be the experience of so many.
I think I’ve shared this before somewhere… but it reminds me a bit of a time when I was watching a psychiatrist testify at someone’s commitment hearing… He had all these incredibly delayed responses and was speaking in this really flat monotone… But no one seemed to notice. Because he was the psychiatrist. If the woman who they were trying to commit had been speaking in that way, it certainly wouldn’t have been dismissed…
Sera,
As usual, you hit the nail on the head. And no, I didn’t roll my eyes, and don’t think others will, either. Co-optation is a time-honored strategy of those in power to de-fang a protest movement, often employed when direct oppression has been unsuccessful. So perhaps attempts to co-opt should be considered a good sign, as it suggests they’ve given up on y’all going away. But giving in to co-optation is not an option. As Steven says, it’s all about POWER. What real peer support does is empowers clients to make decisions for themselves, which is exactly the concept that the MH authorities want to snuff out. So they hire “peers” and re-define the role into one of coaching their less-powerful “peers” into toeing the party line, taking their meds and “accepting their disability” like a good slave, oops, I mean patient, oops, I mean CONSUMER ought to. Kinda like the inmate prison warden who gains privileges by enforcing the prison rules on his/her “peers” in the jail. You stop being a “peer” the moment you have and are willing to exercise institutional power toward those who don’t have it.
Thanks as always for an insightful and memorable piece.
— Steve
Exactly. Any supposed peer worker who coerces the people she or he is supposed to be walking with isn’t any better than the Jewish kapos who enforced the Nazi concentration camp rules on their own people. It’s as plain and simple as that, period. You’ve gone over to the “dark side” the moment you start parroting the “party line” to the people you are supposed to help empower. We aren’t even supposed to talk about “helping” people since this also impllies a certain amount of power and privilege. The one getting “helped” should be grateful to the one doing the helping. We are supposed to be there to learn from the person we serve as well as them learning something from us. This is what a truly mutual relationship is.
Thanks, Steve! 🙂 I’d like to believe it’s a good sign… However, I fear that too much of this is happening on an unconscious level just yet. Too many people haven’t taken the time to understand what peer-to-peer support *is* to intentionally thwart it… They’re just continuing on with business as usual and dismissing or devaluing anything that just doesn’t make sense within that context… Or so goes my experience. If they truly had taken the time to GET IT and THEN dismiss it, well, I think we’d have more to work with…
-S
Most people spend most of their time on an unconscious level, unfortunately. By the end, if something like real peer work does become a part of the system, there will be hundreds of people who will believe it was their idea in the first place or that they worked hard to make it happen, even though they vigorously opposed it in reality. I’ve learned long ago as an advocate to stop caring if those in power understand what I’m talking about, as long as they do the right thing. If they want to believe it was their idea or that they somehow made it happen, I’m happy to let them save face.
Though in this case, the concept that clients actually have experiences that may be different from what the MH “professionals” expect is one that perhaps does need to reach some level of conscious awareness. The main reason most people stop “taking their meds” isn’t resistance or “anosognosia” or “thinking they’re better and don’t need it any more” – it’s because the damned things make them feel like crap and often don’t work or make them worse! Not sure how many peer specialists it would take to make that point. It should be obvious by talking to the clients and asking them why they stop, but that would require we view clients as human beings capable of making rational decisions. Which would be a TOTALLY radical concept!
—- Steve
Interesting, interesting. I particularly use the word and term “peer” quite regularly and it is commonplace in my vocabulary within the context of providing services as a Certified Peer Specialist, but also within the contextual framework of living as person with the shared life experience of mental and social diversity. I am intrinsically a Peer when it comes right down to it. I have many letters that come after my birth name and more to come but at the very heart of it, I am a Peer descriptively, a psychiatric survivor, c/s/x, and the word is true and true to my work and those who I consider my comrades.
Semantics.
Jen, I’m certainly not going to say that you’re not allowed to use the word, but it is so much more than just semantics…
Are those of you who are Certified Peer Specialists off meds or maintained on meds, if I may ask.
Hey there, I imagine it’s highly variable! I know plenty of people working in peer roles or connected to peer-to-peer communities who are not on medications (including myself). I know others who are, and among both groups there are widely varying feelings about experiences with medications, their value, and how best to talk about them in general.
Personally, I’ve become partial to the ‘psychoactive’ perspective. In other words, psychiatric drugs – not unlike coffee, nicotine, and many other substances – have effects on our bodies and minds. Some of those effects are desired and some of those effects are not desired. Sometimes we understand why those effects happen, and sometimes we do not. Sometimes the good outweighs the bad, and sometimes its the reverse. Just because we like the effects for a week, doesn’t mean we like the effects for ten years, but then again… maybe we do.
The point is, if we take it for what it is, become well informed about all the choices, evaluate the risks and effects based on their meaning for our lives on an individual basis… Then we can each decide, and should not be judged for that decision.
I take nothing but blood pressure medicine. If we’re to allow the people we work with and for to make their own decisions about what they want in the line of so-called “treatment,” then we have to allow the same approach for peer workers themselves. It’s not a question of importance to me one way or the other. As long as a person can do the work, doesn’t try to coerce people, and actually promotes people being able to make decisions about their own lives as their own experts, what does it matter whether they take the drugs or not? It’s not a quesstion that I ask other peer workers; it’s none of my business unless they choose to share this with me. The crucial thing is whether they actually do the work of empowering people to think and do for themselves.
I’m disgusted and so highly disappointed after reading this detailed article disregarding my position as a Peer Advocate. Forget about eyes being rolled, how about a puke response? I respect you as a writer, Sean, but it hurts me to no end that a simple word as “peer” or “peers” can create such a fuss. I understand how you feel and your views on the matter of being called a “peer” Sera, just please don’t refer to me as a “consumer” (leaching of the system) or “patient” (someone without a voice) in this sad and hopeless movement that we call, mental health.
It’s no wonder no real accomplishment ever gets made. There’s no solidarity about anything we do or find ourselves involved in. None of us seems to understand branding and marketing. That’s truly a sad, sad, state of affairs. As a prolific writer, I would think that if there were anything that we all as people with mental, psychological, or emotional issues could agree on is would be the use of a term that seeks to empower us. Yet. Here we are. Bickering over something that needs to be settled as an objective to a particular calendar year. In this movement we are “powerless” and “hopeless.” It would stand to reason that uniting on a simple such as “peer” would show others that we stand on a solid rock, and not shifting sands.
Therefore Sera, could you please consider writing something constructive about? Before anything else can be done, ask yourself who we are as a group and what you represent as a person!
I’m sorry you’re so upset by this article. However, I stand by it completely.
I see no value in the word ‘peer’ as the new word for ‘consumer,’ ‘client,’ ‘patient,’ etc.
There have been people at every step of the way who have said that the new word of that era was somehow more empowering… And then it wasn’t.
Why? Because any word that ends up meaning ‘that mentally ill person over there’ can’t be empowering. It could be ‘king,’ and it wouldn’t matter.
Is this truly what we want to get behind? I’d rather get behind concepts like self-determination, peer-to-peer support (very different than ‘peer’ as a label, as it referes to an actual relationship and connection between two people who have found some commonalities in their experiences), approaches offered through the Hearing Voices or Alternatives to Suicide approaches, etc … then what we “want to call them” today.
I believe we miss the point entirely when we keep changing up the one-word label that we give to everyone who’s got a psychiatric diagnosis. It does damage. I see it every day, and I won’t be part of it.
-Sera
Hi Sera,
I followed the link from your recent comment over to this blog. I’m sure you probably aren’t watching this anymore, but I thought I’d still ad my $.02.
As much as I appreciate so much of what you say, and for that matter, so much of what you say in ALL your blogs, I still think you are missing the point of peer even though you keep stating it. In my mind the 2, and ONLY 2, key things about being a ‘peer’ is 1) equality of the power structure, 2) the perspective of BOTH people being ‘in it together.’
I have literally, physically and emotionally, carried my wife thru the healing process. Providing her with ‘affect regulation’ and a safe haven when insiders were joining us on the outside and bringing all kinds of PTSD symptoms and so much more that is typical of people with d.i.d. I was her calm in the storm, her safe haven. That doesn’t happen from a safe distance: it happens by jumping in the maelstrom, swimming to the person that is drowning emotionally, and holding them emotionally and physically, so that the words, “It’s ok. I’ve got you now. You are safe. You aren’t alone anymore” have real meaning.
Our ‘common experience’ is NOT the abuse: I had a nearly idyllic childhood in comparison. Our common experience is that, like the song says, I have literally ‘walked thru hell with you.’
I never saw my wife as crazy or less than me. H3ll, I joke that I’m the family idiot compared to her and our son. I never treat her or ANY of the other girls, even the littles who present themselves as 1,2 and 3 years olds. It’s just how d.i.d. works, but I walked into her maelstrom and held her hand (or carried her as need be) as we gently, BOTH found our way out of it…together.
Our commonality is today, not some experience in the past.
Sam