In ‘Peer’ We Trust

Sera Davidow
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We’re in scary times.  For so many reasons.  Perhaps the industrialization of ‘peer work’ should rank fairly low on the scale of scary, but – at least for me – it’s up there.

An Industrialized Nation – A Sampling of the Questionable, the Concerning & the Downright Outrageous

Medicaid reimbursement of ‘peer’ support is already in place in several states, with more on the way.  People in the so-called ‘recovery movement’ are fighting for it to spread, as if it were some great accomplishment and not something that will quite literally eviscerate all the most valuable elements of peer-to-peer support – all that makes it something different.

What do I mean, some of you may ask?  Here’s but one example of many:

Now, I’m not much of a WRAP-ophile, but I do at least get that Mary Ellen Copeland and company worked hard to create a foundation of values upon which Wellness Recovery Action Planning (WRAP) firmly sits, including the importance of self-determination and ownership over any plan created.  When I was in Maine, however, I noted in one community center’s newsletter that they were offering a WRAP group for which one could only sign up if they went through their Case Manager!  Why?  Because it needs to be in their ‘treatment plan’ for Medicaid reimbursement purposes, of course!  So much for personal ownership.

Meanwhile, New Jersey reportedly aims to open the first so-called ‘peer’ respite house by way of Medicaid reimbursement with results that I suspect will be fairly devastating to all that is called ‘peer respite.’  And, even without Medicaid reimbursement, another so-called ‘peer’ respite already open in the country doesn’t allow people staying there to leave unless they’re with their case manager.  (Forgive me all my ‘so-calleds.’  I’m at a linguistic loss for what else to do.)  And yet, when some of us speak up and challenge the right of some of these groups to even claim that title of ‘peer respite’ (or other similar titles in similar situations) more often than not I hear “There’s lots of different ways to do it,” “We don’t all have to look the same,” or “A little bit better is still a step in the right direction, right?”  But, at what point does a little bit better actually become a whole lot worse?

In other related news, massive insurance agency displays are popping up at the often not-so-alternative Alternatives conferences year after year and we now have an organization – the (supposedly) International Association of Peer Supporters (amusingly transitioned from NAPS to iNAPS after having recently self-proclaimed international status) that aims to speak for us.  Yet, at least the original version of their proposed ‘national standards’ draft insultingly suggested mandatory ‘self-care plans’ for people in peer roles.  (They say this was just a starting draft, and yet it was telling as to their own starting point.)  When I attended a meeting on these standards held at last year’s Alternatives conference, one person there suggested, “the train has left the station,” on issues of Medicaid reimbursement and standardization of peer roles, as if we all needed to shut up and hop on board.  I countered that our movement (at least the only one that I want any part in) has historically never shied away from the ‘fight’ or accepted forecasts of hopelessness.  I asked where all that fight has gone and was met with silence.

And, of course, Certified Peer Specialist (CPS) trainings are sweeping the nation.  Perhaps this wouldn’t be such a dismal trend if those trainings aimed to give people working in peer roles a solid foundation in values and the tools needed to avoid co-optation and truly understand the change for which they are working.  Alas, instead, most of those trainings seem designed to assimilate people into mini mental health worker positions, and what’s scariest is that so many students seem so ready to be assimilated!  Admittedly, I myself have participated in facilitating parts of the Massachusetts CPS program in hopes to further strengthen the change and de-mecalize the curriculum.  Routinely, I have been responsible for offering a module on the history of our goes-by-many-names movement and when I do, I always bring in original copies of Madness Network News, Phoenix Rising, State and Mind, Dendron and so on from the 70’s, 80’s and 90’s.  One time, a class member chastised me for the offensiveness of some of the material in those newspapers and magazines.  Personally, I wonder where all the ‘offensive’ has gone?

The quiet – the willingness to be led into the night without protest… it is not serving us well.

And the ‘Professionals’ Profess…

Meanwhile, while those of us who actually identify with this movement continue our squabbling, in-fighting and lack of sense of true direction, there’s no end of ‘mental health professionals’ willing to define our mission for us.

Recently, someone forwarded me an article published by the Psychiatric Rehabilitation Journal in June of 2013 entitled, “A Demonstration Project Involving Peers as Providers of Evidence-Based, Supported Employment Services.”  I wish I could sum it all up with my initial reaction (which was “Ugh.”), but I feel compelled to delve further.  I also wish I could insert a whole copy of the article here, but it says very clearly on it, “This document is copyrighted by the American Psychological Association or one of its allied publishers.  This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.”  I fear that posting it here would qualify as ‘disseminating broadly,’ (but hey, e-mail me if you – as an individual – would like a full copy!).

There are countless issues with this article, not the least of which is the oppressive usage of language like the ever-charming acronym, ‘SMI’ (standing in for ‘Serious Mental Illness,’ for those of you not in the know!), and the relentless reference to people as ‘consumers’ or ‘peers.’

However, I’m going to step away from my generally preferred debate on language to some of the deeper issues that it represents.  This article – offering results of a demonstration project where people who received psychiatric services were now also providing employment-related services under a particular model (Individual Placement and Support) – does indeed demonstrate something.  However, what it demonstrates is nothing other than the fundamental lack of understanding and abuse of ‘peer’ roles that is running rampant throughout our nation.

First of all, this article (and the project before it) defines ‘peer provider’ as follows:

“Individuals who have achieved functional recoveries from a mental disorder, continue to receive mental health services themselves, and are employed by mental health programs to work alongside professionally prepared staff members.”

It goes on to offer a list of common tasks of such ‘peer providers’ the first two of which are “Case Manager aides” and “Community aides that connect hospitalized consumers to continuing outpatient services.”  (I believe I’m due another, “Ugh,” right about now.)

I suppose it’s helpful to their study that they should have such free reign over how the role gets defined, and yet, it strikes me as problematic that the definition’s meaningfulness extends no further.  At least, that’s how it strikes me if one is to assume that the intent in funding this ‘demonstration project’ included something other than spending money to uncover little more than imaginary implications.

In truth, ‘peer’ is defined more by the relationship between two people than it is based on qualities one holds unto one’s self.  For example, I am currently sitting completely alone in a room at a desk in front of a computer.  As I sit here so alone, I continue to independently possess the qualities of, say, having long hair.  I also continue to be a person who knows how to type pretty fast and can even look away from the computer at someone who’s come in to speak to me whilst continuing to type.  (It’s a pretty neat party trick.)

As I look up at my children’s pictures posted on a board above my monitor, I am reminded that I continue to be someone who has given birth, although I am only a mother in relation to my children.  Similarly, although – as I sit here – I continue to be someone who has experienced forced hospitalization, taking psychiatric medication, diagnosis and so on, I am only a ‘peer’ in relation to others who have been through similar experiences (or to other mothers, or to other women who have had miscarriages, or to other people working in similar jobs, or to other movie lovers, or to other filmmakers, and so on and so forth).  As I sit here, I cannot be ‘a peer’ otherwise undefined and unconnected.  It just doesn’t work, and so the definition that ‘Kern Et Al’ have used for this paper falls flat on its face right from the start.

Furthermore, even if we were to accept some of that basic definition, why on earth should people need to “continue to receive mental health services” to qualify as ‘peer’?  How does that relate to their ‘peer’hood?  From where I sit, it only seems to identify the particular group of people involved as people who likely find mental health services helpful (or for whom they have been made mandatory in some way) which certainly excludes a large number of those actually working in true ‘peer’ roles.  I also worry that it may speak to just how indoctrinated the people involved in this study may be to the system within which they are now working, though there isn’t actually enough information in the article to fully assess that concern.

But let’s keep going.  In particular, this project seems to focus on only three people working in peer roles each of whom reportedly had a history of “SMI, ranged in age from 40 – 59 years, and had educational attainment ranging from 10th grade to 1 year of college.”  Prior to being tested out in this new ‘employment specialist’ role, their jobs involved “assist[ing] with case management needs and to perform other assigned tasks which included assisting with group therapy sessions, gathering survey data and planning social events (e.g., birthday celebrations).”  (It’s probably worth noting here that the only activities over which this description suggests they may have had full leadership are the deeply serious and meaningful social events such as birthday celebrations.)

For fear of losing every last reader who has even made it this far, I will jump ahead and summarize by saying that subsequent sections on the methodology of the project describe tasks associated with the new employment specialist role as including (among others), “progress notes for the consumers’ medical records,” “wake up calls,” benefits planning, relationship building with local employers, on-the-job support and cheer leading, and in some instances, “counseling on medication adherence.”  (Not all of these are inherently contrary to ‘peer’ roles, but some of them – such as making notes in medical records or encouragement to take psychiatric drugs – speak to a level of power differential and voice over self-determination that are inconsistent with the mutuality that should exist in any role called ‘peer.’  That said, certainly, Ms. Susan Inman would approve of that last task, given what she wrote in her 2012 article, “How Peer Workers Can Hurt People With Mental Illnesses.”)

Most importantly, the write-up of the results of the project also contained the following gems:

“The peers were asked to ‘stretch’ into the demanding employment specialist role.  They were challenged to transition from a role of case manager assistants to performing as employment specialists, a job of much greater complexity and rigor.”

“The peers expressed high levels of uncertainty about the priority of developing vocational skills as a core component of their current position…the first months of training required our team to work with the peers to help them understand the value of doing this work.”

“The program required a high tolerance for medically excused absenteeism resulting from the peers’ physical or mental health problems and appointments with their doctors and therapists.”

“Peers pose training challenges given the kinds of complex and varied skills necessary to function as a competent employment specialist.”

Now, I don’t know much about this whole ‘Individual Placement and Support’ (IPS) approach to employment.  Perhaps it’s better than employment programs that focus solely on the ever popular five F’s (food, flowers, filth, filing and folding) that get forced down people’s throats as if the whole wide world of career options shrunk upon diagnosis.  But, here’s what I do know:

  • A job doesn’t become a ‘peer’ role just because you will it or name it so.  Peer-to-peer work is more about how two (or more) people relate to one another, and less about one person’s identity.  The jobs described in this project are decidedly and without question NOT ‘peer’ roles.
  • It’s highly suspect that the article mentions in at least two places how much time was needed to convince the people involved in this project that they should be doing the employment specialist work.  Perhaps they, too, knew in their heart of hearts that the work was not a fit.
  • People who have been given psychiatric diagnoses do NOT necessarily require a ‘high tolerance for medically excused absenteeism.’  I work with about 30 people who offer some aspect of peer-to-peer support and who have been psychiatrically diagnosed at some point in their lives.  Although we experience the same issues with reliability that any workplace does, overall, we do not have any unusual needs for tolerance of lateness or illness.  The last person to take a lengthy leave of absence was me in 2011.  I had a baby.  We called it maternity leave.
  • From all that I have read, the ‘employment specialist’ position doesn’t come even close to matching the “complexity and rigor” required in some of the roles we employ through the Western Mass Recovery Learning Community.  In particular, people working at our ‘peer’ respite (Afiya), often work 12.25 hours at a time with people experiencing intense levels of distress and who may come to the house with a variety of needs, hopes and concerns.
  • People who have been diagnosed and received services in the mental health system do not inherently require more training (unless, of course, they have been drugged into submission by a system that so often prioritizes numbing people into an artificial sense of ‘safety’ over personal agency).  In fact, people who have ‘professional’ degrees or who have worked for a long time in the mental health system are often much harder to train for all the unlearning they have to do.

The Western Mass RLC is not the only place doing good work.  It is simply my closest place of reference.  People are doing good work that fits the values of peer-to-peer support in many places across the country (though not nearly enough).  But that work is being under-documented or missed entirely in favor of these sorts of projects that can’t serve to prove anything because they’re not even starting from the right place.

A Personal Message

To the authors of this article (Robert S. Kern, Shirley M. Glynn, Deborah R. Becker, Robert E. Drake, Wendi Tovey, Roberto Zarate, Luana R. Turner, Kellie M. Smith, Sharon S. Mitchell, Alex Kopelowicz, Robert P. Liberman) and all others like it:

Unfortunately, if you start with the belief that ‘peers’ are only the people you identify who fit in a small box and are hired within your vision, of course your results will suggest limitations.  But make no mistake:  The limitations you find are the limitations of YOUR vision, and not of a whole community of people who inevitably are complex with multiple talents, gifts and strengths themselves and aside from (as well as sometimes because of) the challenges they have faced past, present or future.

And what of the people already working as ‘employment specialists’ under the IPS model who have also been diagnosed, but dare not reveal their personal experience?  I’m sure they, too, exist, but again your vision limits the space they might ever have to feel safe to share that with you.

Your article accomplishes little more than to perpetuate ideas that people who have been labeled with “Serious Mental Illnesses” are limited not only intellectually but in their basic human potential.  I personally urge you to look beyond the controlled studies within your immediate sights, and out to the wide world of personal stories that offer more power and hope than your “measured degree of optimism” could ever touch.

 

In Conclusion

I know that some of you don’t believe in peer-to-peer work at all.  In my own local community, we’ve dropped the word ‘peer’ altogether for some of the reasons you might be inclined to cite.  But we’ve hung on to the values and to the belief in the power of creating space for people to connect and move through very difficult places.

Ultimately, I do believe that some of us are doing very important work, but we need to find more ways to speak out against those activities that serve to do little more than move us further away from relating to one another on a genuinely human level.  This is true whether we’re talking about distortions that are born within our own so-called movement or from the so-called professionals publishing in journals that surely won’t give us the same editorial voice.

Somehow, we need to decide: What exactly is it that we’re all trying to accomplish?  I’m not sure too many in the ‘peer’ industrialized nation could offer much clarity on that.  But, we better get clear and fast, because others aren’t waiting around for us to decide.   If we’re going to be heard, we’d do best to sharpen our ‘tools’ for the fight.

79 COMMENTS

  1. You talk a good line. I’ve re-read your blog several times and to give you credit, I still don’t know where you land. I’m a peer and an Advanced Certified Peer Specialist and Community Health Worker out of the State of Texas, Dept of State Health Services with via HOPE Texas’ Mental Health Resources. Yes, I’ve been through the mill as a psychiatric survivor and yes by circumstances, of course I also helped the Texas community with a CPS in Texas. I attended the 7th Annual iNAOPS Conference last week in Anaheim and count many/all there as trusted colleagues to the fight to standardizing the CPS and RC. It is a flawed system but bitching and moaning does nothing but isolate and create silo systems. Use your skills to coalition build, Sera. Build relationships v dismantling. You’ve got a lot to offer and you’re wonderfully present, but when it comes to peerness, the CPS, standards, care, c/s/x, I’m seeing the nation dismantled by rhetoric and bemoaning rather than a united front. WRAP, btw, for state department vocational rehabilitation must be written into an individual employment plan prior to any approved payment. That isn’t unusual. The “case manager” is the Vocational Rehabilitation Counselor, FYI. MCO’s are billing WRAP because it’s evidence-based (EBP). While I am a trained facilitator in WRAP, and see HOPE (the 1st Concept) as the key basis for recovery, for peers, for myself, for our comprehensive movement. I encourage you to broaden your world and meet others working in the community nationally as you mature in your work here.

    • Jen

      As a peer worker I do not find your response to Sera very helpful at all. Right now I’m watching what Sera describes taking over the state that I live in. The program that the state is creating for CPS’s is being laid down exactly as Sera describes it here and I for one do not think that this program is going to be helpful at all to people in the system or for any kind of so-called “recovery” for anyone. I suspect that this program is going to promote coercion and is structured to support the toxic drugs as the only “treatment” available. The psychiatrists and other so-called “professionals” hold all the power and the peer workers will end up doing menial tasks and nothing of any great importance as far as “walking with people towards healing and well-being.” There will be no healing or well-being but total promotion of the so-called “professionals” power and the status quo. This program will gut any kind of real, true peer work.

      I would suggest that you take your own advice about broadening your world and find out what is truly happening in the field of peer work. It’s not a pretty picture at all and is just more support for the same old same old. Sera helps run one of the most progressive examples of true peer work in the entire nation. As far as I’m concerned, Sera is mature enough to hold her own in any discussion concerning peer work and what true peer work really is.

    • After reading this I am not sure where to even start. I guess I will first respond that where you placed the statement about loosing readers should have been several paragraphs up. I FORCED myself to read this whole opinion you have made based on an article that made you angry…. I have been a trained peer Certified in my state by UNC school of social work because I worked hard to meet the criteria to become a state certified peer. This was 9 yeas ago. I am also a certified WRAP facilitator and I am by no means an ophile. I stood on the cusp of our states Medicaid system accepting my employment position as reimbursable. I was hired 2 months before the standards changed. My first day at work I was so thrilled to get a supervisor who understood WRAP and had been trying to provide it to his “consumers” (whatever word you choose to place there) with his limited knowledge of the program. He saw me as a respectable and smart employee. At the time I was hired as a para professional because the only “peer” jobs were with acute cases of SMI and I knew I did not want to put people in the hospital….. I was forced into one many times in my youth and my goal as a peer was to help people see a path that would suite them and keep them “well”. I do not subscribe to the thought that well looks the same for everyone. I am not a minion and I loved the people who gave me the training to be a “certified peer and WRAP facilitator”. I was trained in my job my several people and my peer status was left to me to share with my co workers. I was not put in a separate box because I was a peer. I was not forced to attend therapy I had supervision. I attended all the same meetings as my co workers. I could go on and on but this company was my first and last good experience as a peer. My first day with this company I asked the person I was training with about a co worker who was VERY tall and passed us in the hall. Her response was ” OMG he is on of those peer people I can’t wait until this trend ends because they do not belong working with us” I did not react I spent the whole day with her and was myself. As the day ended with her I asked her how the day had gone in her opinion. Fantastic she complimented my interactions with “consumers” so I then mentioned the co worker she was talking about earlier the “lowly peer” and I told her “I AM a peer I took classes to work just like you did. Mine were shorter because I do not want to be a clinician at this time I just want to help people who are hurting” I tell this story because about 9 years ago I was tolerating this ignorance and condescending attitude. That company went under and was consumed by a large corporation. There were no WRAP groups in our area so I started speaking with people and putting groups in place. As long as I could bill for them the company did not care. I found a co facilitator who was a “professional” but also a WRAP facilitator. She is still my best friend and I adore her and her thought process. We ran groups together and had a “consumer” who would not leave her home go on to work part time and go on to go to college. Not everyone was helped by WRAP and I was ok with that. There is no standard that solely reflects a path for EVRYONE. That is the beauty of blending peer based services with clinical practices. In life you have to follow multiple steps to achieve a goal in most instances and the bit about having a case manager add WRAP to your service plan is like real life. All you have to do it let the case manager know you want to attend a group. As I went on trying to implement groups in an area the “professionals” became less and less inclined to give up hours they wanted to bill for because we worked on a fee for service basis. Companies bastardize what peers are or look like. And any in fighting in the peer community should STOP at once. We should agree to disagree on approach but stand united as peers. Almost a decade later the national changes I hoped to see come about are starting to happen. I can talk with someone about med management and talk about the pros and cons of their medications. I will print out and read over with them the pages of warnings and side effects so that if they choose not to take medications they are doing so in an informed way. I encourage people to question their Doctors as well and have a healthy dialogue on their “treatment options”. I practice this myself. Does my newest PA writing my script like it NO WAY (she’s in the old school I’m a Dr. God complex category) but she is who my insurance will cover so I practice what I preach when seeing her. I go to therapy not because of my job (because there were YEARS I worked in our field without medication or therapy” but I have been through a lot and have a PTSD episode that makes me no less of a peer. I was injured in my job extensively trying to help someone. I am not at this time a employed peer but I am still a peer. I cheer for the peer movement and I talk to newly certified people. I am practical on how the work force will treat them. And I still talk with anyone who is struggling as a peer employed or wants you know what peer employment looks like day to day. The 5 F’s as a valid statement. But only we as peers can demand to be treated with respect. And we do so by going to work like everyone else in society not begging for exceptions because we are “sick” but showing what a work in progress can look like successfully. So to all peers including you I ask. Stand together work together through differences because if you do not if we do not then it is a divide and conquer situation! The people who blazed trails for todays standards did not go through the HELL they did for infighting but to unify!

  2. Hi Sera. I have been up and down and through the mill since I studied with you in May. I found out I was losing my license to practice in the state of Ohio shortly after returning from the HVN training. It has been gone since July 18. It is probably just as well, because most of the clinical people in that training clearly identified me as a person with lived experience (and not “one of them”), which is now exactly what I am.

    Jen Pardon, You and I have crossed paths on this particular topic before; and I meant/mean you no disrespect. In a personal sense, you have been really wonderful to me. You did let me know, in no uncertain terms, on another forum, that I don’t know anything about your programs, or the programs being studied/designed at your alma mater in Texas, and that I should subsequently keep my mouth closed on the subject.

    So, I will have a little bit to say about programs in the state of Ohio that I have been living with since the 90’s. I think we can all agree that Ohio was one of the first states on board with peer programs. Except that no one here knows we have peer programs. Why? Because the peer workers look exactly like mini-me clinicians and have since the beginning. They also experience all of the same discriminations that are found inside of the mental health system toward workers with mental health diagnoses. The peer workers focus on the same items contained within Ohio’s Mental Health Case Management rule, including medication compliance, crisis intervention (read coerced treatment) and others that have been traditional within the systems for decades. My basis of knowledge here comes from a lifetime as a “patient”, twenty years as a clinician and the role of treating clinician in the case of several peer workers who had been traumatized by the discrimination and abuse they experienced within the system. As a graduate student and a professor, I even taught research and participated in various evidence based studies. But I digress. My purpose in commenting here was not to give my resume’.

    I will sum up my comment by recounting an interaction I had with a clinical person from Asheville at the HVN training in May. She came over to me and commented that she felt there was some conflict between the clinical people and the lived experience people. I noted that I felt that if we were in a room talking about the HVN concept without any conflict, we would be in the wrong room. She then asked me if I was saying I was happy that the room was a safe place for conflict. I could not help myself, I had to ask her if that was what she would be comfortable with me saying. No response on that one.

    I remain comfortable with conflict in the area of radical mental health. I remain, also, unconvinced that most “peer” programs are fully aligned with the ideals and objects of radical mental health.

  3. Interesting to hear from someone else with a combined experience from my state. I never knew it was one of the first and never heard of peer jobs until early this year. The coalition that certifies peer specialists is run by the state and that says it all. I found them to be difficult to communicate with on the basis of training information and response to my application. Does anyone know what recovering substance abuse folks who work in rehab are required to do with their own program? Do they have to log meetings? Just a thought.

    • Cat, the board that certifies CD professionals, which is now to be combined with the board that certifies MH professionals states that you have to have “2 years of abstinence from the abusive use of any substance” in order to be certified at any of the 4 levels. Leaves a lot of room for interpretation, no? If you are working at an agency that does not require a certification, it would have to be up to the agency to specify criteria for a recovering individual–a difficult task, I would think, since recovery is so individual. For the most part (I believe), outside of law enforcement contexts, the “A” meetings remain anonymous. There is also a nifty new thing called a recovery coach that is on a par with a peer worker in mental health. In my last “real” job, I was lucky enough to work with a recovery coach who took his role seriously enough to tell me exactly where to get off when I asked what I thought was an innocent question about how one of the individuals I served was getting along in an “A” meeting.

  4. Amen. Keep on squabbling. Once getting past human the whole “peer” has turned into another DSM thingy IMO. Once I got my Peer Support Certification, I was rejected for a position helping folks transition from local short term inpatient ward to community resources. These positions were thru a local “peer run agency” working for the local medical behemoth. I was told by one of the “peer interviewers” that they felt I wouldn’t be encouraging strongly enough to stay on their medications!” I haven’t worked in the mental health field in several years, my sanity was too much at risk.

  5. I agree. I think the whole PEER thing, in general, is just another funding-motivated sham in this mental health debacle. My time of going through the system, getting out of it, and then publically speaking about the experience around town, coincided when all of this was developing. At first, it seemed interesting to me. I had been a trained psychotherapist before entering the system for my own personal ‘support’ during a time I needed it (being disabled and unemployed at the time, and terribly naïve of what I was getting myself into), and I thought that, perhaps, I could utilize my training and skills, coupled with my rugged and exhaustive experience as a client in the system, to help others have an easier time of it, with the goal of helping others achieve a successful transition out of the system, and into wellness.

    I quickly saw that this was not the intention of these ‘peer counseling,’ and related programs, but that instead, it did, indeed, simply amount to conforming to DSM/mental health system box and all that ‘medication compliancy’ crap. I saw it as perpetuating discrimination, stigma, and self-limiting beliefs, purely, all in the name of funding, like a front.

    It’s hard to actually write this and say it–and I mean all of this with all due respect–because I know people who enjoy providing this kind of peer support to others and do seem to get something out of it for themselves. But in the end, I feel it perpetuates that same system of potentially toxic power differentials, and I believe it also keeps people stuck in believing the myth that there potential is limited, putting them in a category of the community that pretty much amounts to being marginalized. At least, that’s the way it was in San Francisco, within professional ‘advocacy’ included.

    So the ‘peers,’ really, are other marginalized people. Or, if you are a ‘peer specialist,’ then perhaps you are no longer marginalized? Which would then mean that it is no longer a peer-ship, because one would be marginalized and the other is not. Either way, doesn’t seem like progress to me, just more of the same, and costly.

  6. “But, at what point does a little bit better actually become a whole lot worse?” Thank you so much for that! “Peers” have recently started to become very popular here in Denmark, too. — “Oh, look how well this works in the U.S., we should have that, here too!” — I saw a job ad some time ago, by the regional mh services. It explicitly stated that applicants had to have a bio-genetic understanding of “mental illness” to be considered for the job. Need I say more… But, of course, they’re not stupid. Nothing can convince the uninsightful who toss out their “meds” all the time and insist they’re not diseased that, indeed, they’re suffering from an incurable brain disease that needs life-long medication like a “peer”, someone who’s had the experience themselves. You can argue with theoretical knowledge, but who can argue with lived experience?… — “It’s tough, I know, I’ve been there myself! But look how well I‘m doing now that I have insight into my illness, and do as my p-doc says taking my meds every day as prescribed! I even got a job!” — That’s where I see the little bit better become the most whole lot worse.

  7. In thinking about this some more, I’m realizing the broader issue of taking mental illness system money to do alternatives needs more analysis.

    My vision of what we are ultimately working for is a system that offers real help. That means government money will be spent for programs that genuinely liberate people, not enslave them to drugs and a self-image of being less than human.

    The problem right now is that anyone who sincerely tries to do something helpful has to take money controlled by people who DON’T want to be helpful, but just extend their power. And of course the present system is happy to fund grant hustlers whose goal, which they have been pretty successful at accomplishing, is to get power and money for themselves while sabotaging our human rights movement.

    So I think those people who are sincere in trying to create alternatives should keep in mind that, unless we work at taking away the power of the present system, these true alternatives are very vulnerable to being wiped out by people with just the opposite priorities.

    We have to convince the public (because this is a democracy, sort of) that the power of psychiatry as it is practiced now has to be taken away.

    So I am saying to those who truly want to see something different that trying to create alternatives, and fighting politically against the abusive system we have now, have to go hand in hand. We have to have both, otherwise programs that start out as genuine alternatives will soon be corrupted and co-opted by the system.

    I know this might sound vague, and I am not entirely happy with what I just wrote, but I do think this issue is one that our human rights movement (yes, we still have one) ought to be discussing a lot more.

    • Hi Ted,

      I was very excited to see your comments above, as my recent observations around here have had me thinking along very similar lines – if I have understood you correctly.

      “So I am saying to those who truly want to see something different that trying to create alternatives, and fighting politically against the abusive system we have now, have to go hand in hand.”

      Both hands are of the same body, but one hand must destroy, while the other hand must create. People in general might be too afraid (for a host of reasons, not necessarily reflecting badly on them) to recognize the horrible truths about psychiatry – no matter how plainly those truths are spelled out – unless there are viable, independent alternatives to which they can turn. (They have been propagandized into believing that psychiatry is the only solution, despite its dismal results.) Therefore, one hand must create. Any viable alternatives to psychiatry will not likely be permitted to grow, however, given the power of psychiatry within the larger socio-economic/political system, unless psychiatry’s very right to exist is challenged. Therefore, one hand must destroy. It is easy to see how dependent the work of each hand is on the work of the other. Each hand strengthens the other as they both grow stronger. Both hands must be working simultaneously if success (the end of human rights violations by psychiatry and the beginning of widespread, genuine help for people in distress) is to be achieved.

      If I haven’t understood you correctly, then I apologize and will return to lurking.
      🙂

      • YES! In my community, many of us hold a vision and examine carefully what role we are asked to play as a “peer”. Does it align with the vision or run counter to it? We discuss it because we met in a peer-run environment. Example: Am I “disabled” because my psyche can’t tolerate the expectations of a world rife with toxic energy? Evidently so.

        IMO, self empowerment is choosing, deliberately and consciously, to support an alternate vision. That may involve refusing a particular role. These are individual decisions. The trap is funding. I don’t believe those in the current system are consciously exercising oppression. I don’t believe they are that sinister. Given my current experience, they are either oblivious or think they are doing the right thing–it happened with sharecroppers, too.

        Experience, no matter the source of initial funding, allows this discussion. I am connected with others like me because of peer programs. Yes, pay me to network and discuss how we can create true alternatives with integrity. If I can network without causing additional harm, I will be there. I tend to not go “anti”, but to be where connections are made.

        I count on the current mental health system to fail. It’s overloaded, underfunded and, if you look beneath the surface, falling apart. In the meantime, this blog is a great example of building a network with a different vision.

      • Yes, you have understood me just fine. It has taken me a while to reach an understanding for myself where alternative programs fit into my own picture of the movement. Makes me appreciate this website’s mix of ideas and how it facilitates discussion. Myself, organizing alternative programs is not my thing, but I’ve been lucky to find a couple that helped me when I needed it. The Vancouver Emotional Emergency Center in 1975 probably kept me from the psych ward. They could exist because they were funded by Canadian anti-poverty money, not the mental health system.

  8. Sera Davidow,

    On Monday August 19th I presented SOC Summer of Learning Webinar involving peer support services and the financing of these supports. American Institutes for Research were the organizers and you can find information there. IF – IF YOU DIDN’T STEAL ALL OF MY CONTENT FOR THIS POST ALREADY, WHICH MEANS IF YOU GO AND WATCH THE PRESENTATION YOU ARE JUST RETURNING TO THE SCENE OF THE CRIME.

    Kidding aside. I gave a presentation with a lot more political correctness(Respect). I hit on many of the points that you talked about. As the Executive Director of the country’s first independent Youth M.O.V.E. chapter (Youth M.O.V.E. Oregon) and as a former youth coordinator of Mind Freedom International – I have an interesting vantage point.

    I think there are two different directions the work of peers will ultimately head towards next. One is the professionalization of peers. This is a needed in my opinion adaptation of peer support.
    “I have been through this, let me connect you with the system.” Is different support than (and the second direction) “I am living my life in the situation you are in, let me come alongside you and we will figure this out together.”

    Then the studies begin. Which is more effective? I think that both will reach a different population. With the ladder meeting a more acute/long-term population.

    Forgive me for my lack of elegance. It is fairly late. However I would love to know if you plan on adapting this message to a different audience/venue. Thank you for this work. Great to find a new favorite blogger on the subject of peers!

    Martin Rafferty
    Executive Director
    [email protected]
    fb.com/youthmoveoregon

  9. Sera thanks for your post. In Scotland where I live, a country of around 5 million people, the mental health peer support initiative has become assimilated into the health system.

    I got involved in the mental health world here because of the peer support movement in America and in 2008 set up Peer Support Fife:
    http://www.peersupportfife.org.uk/
    to be in solidarity with what I thought was a human rights movement in my country, bringing about real grassroots change to the psychiatric system and mental health services. However the more I got to grips with what peer support was about, the more I became a survivor activist and campaigner.

    Because we are a small country most of the funding does come from statutory sources, local or national government. But that doesn’t mean dancing to their tune, as in performing monkeys, croneyism and the backstabbing/badmouthing of anyone who isn’t singing from the same hymn sheet. I know what the latter is like and have got used to it now.

    I agree with Ted about both fighting the abusive system and creating alternatives, and to this end I challenge forced treatment and human rights abuse in psychiatric situations (through blogging, Emailing) while participating and taking a leadership role in national mental health groups from the survivor perspective. I also support two adult sons who are recovering from psychiatric hospitalisation, drugging and labelling.

    They first labelled my mother with schizophrenia in the 50’s and the system has done its best since then to label the rest of my family with psychiatric disorders. I think of myself as a resistance fighter, having never believed a word of it when being restrained and constrained by the system. I broke free when I could.

    Peer support for me is about helping people break free, standing with them on the journey, telling it how it is, whatever the cost.

  10. After readings the post and all of the comments, I consider myself lucky that there is no peer movement in the country where I live. You have said elsewhere, something to the effect that the best peers are your friends and allies. Ehen the coercive powers of the state are involved, there is little wiggle room. Let me see if I can connect the dots. Start with a mental health crisis, enter hospital or doctor’s office, get a prescription, become permanently teathered to the system because of the prescription, get involved with social workers/peer support workers. Get out of the system only if you are willing to go it alone, which has its own problems, too, of course. Our family has had to enter into what Thomas Szasz calls a “contractual relation” with a psychiatrist. We hired a private psychiatrist rather than stick with the state run program he was in, and we also entered into a contractual relationship with an occupational therapist, where previously this was provided through the program. My son is still teathered to his psychiatrist because of the prescription, but there are no tie-ins with the complexities of the state. In theory, we have more say by going private. The psychiatrist and the occupational therapist know that the money is coming from us. He who pays the piper calls the tune.

  11. Having gone from medicated and marginalized to ‘peer society’ to being off meds, done with diagnoses, and living my life freely, wholly, and professionally integrated now, I found that the biggest resistance to my wellness came from those who continued to identify as ‘peer consumers’ (in their language). I was attacked many times in various ways by my ‘peers’ for getting off meds and for having dis-identified from mental illness diagnosis, altogether, and the system. When one person in a group heals and moves forward, it can bring up a lot of resentment within the peer group, rather than encouragement and support. Makes it tougher to heal, but then again, these are good tests. After all, the real world is filled with all sorts of resistance that can boggle the mind. Eventually, I found the support and encouragement I needed, but not from anywhere even close to the mental health world.

    Without a sense of independent thinking, we tend to learn from our oppressors, as a way of ‘succeeding’ in the peer world of the system. By ‘succeeding,’ I mean acquiring some sense of power, after feeling so powerless for so long. I think that’s a psychological phenomenon worthy of consideration, here. I ran into a lot of very powerful double-binding paradox along this journey to be healthy and free.

  12. Sera – Thank you for this post. It is a given that the irrational system will move to co-opt change that threatens the status quo. Constant vigilance is required against this, and to assure that progressive change doesn’t itself become frozen into its own form of dogmatism. Your post is a valuable contribution on both scores.

    “Evidence based practice” imposes a conformity that has little to do with real human progress. Barry Duncan et al have documented that “evidence based practice” is illusory – there is little real evidence, and scant difference between one or another such practice. But there is a lot of difference WITHIN each practice, based on the personal qualities of the “helper.” Whether something is “evidence based” matters a lot less than the working relationship between the “client” and the “helper”.

    I don’t want to get lost in defining all the “common factors” of good “helpers” that Duncan et al identify as making a real difference. But here’s my own starting point:

    Decades ago (before the women’s movement thankfully made the language archaic) a friend (who was a supervisor) posted this sign posted above his desk: “No man is good enough to be another man’s boss.” My version of that: “No human is good enough to be another human’s therapist, counselor, advisor, or “helper.” That pretty much defines us all as peers and requires that whatever our labels, we must treat each other as peers. Any interaction – regardless of titles, regulations and strictures imposed from the outside – needs to occur on the basis that we are equals.

    This doesn’t solve all the problems caused by bureaucratization, regulations and co-optation, but it provides a good check on how we define ourselves and our organizations, and what we do moment to moment. To be of any real use to someone who struggles, we must assume he/she is a “genius at work”. If we offer ourselves to them as human beings – peers – and if they choose to enter a relationship with us, they will use that relationship to work out their problems. Requirements and regulations based on today’s “evidence based practice” more often than not block this process, rather than promoting it.

  13. For a long time, I’ve been disenchanted with the word “peer.” Based on my experience, a “peer” now refers to a current or former consumer of mental health services who is very much indoctrinated and is trained to promote the biomedical model. A few months ago, I was seeing a peer support worker myself and was not impressed. I told him about my rage at having a decade stolen from me by the system and he responded “It wasn’t the system that stole those years, Francesca, it was your illness.” Then I said how well I was feeling and he responded “You need to realize that you’re only doing well because you’re on medication.” Both of these statements seemed astounding to me at the time, given that he didn’t know (a) what medication I had been prescribed, and (b) whether or not I was compliant, and (c) what I had endured for the last ten years. In fact, I found his “help” pretty useless, patronizing and infuriating and I severed that interaction.

    • When I was doing my MFT training, my supervisor actually told me to give responses such as these to clients, on which I would never, ever follow through. I also thought it was extremely patronizing, thoughtless, utterly useless, and potentially harmful.

      So from teacher/supervisor–>therapist–>client aka peer, paying it forward. It’s a program that most definitely needs to be deleted.

      I couldn’t tolerate this environment, which is why I defected from the field and turned to energy healing and spiritual work, for, both, my healing and my training. Much more neutrality, empathy, and solution-oriented, rather than the party line.

      Good for you for walking away from that crap!

      • Btw, when I say ‘program,’ I don’t mean peer programs, (necessarily). I’m directly referring to the indoctrinating DSM, et al, programs seared into minds from education and training, as in having a computer program in the mind, reflected in these kinds of ridiculous and ignorant responses to clients. To me, this is akin to generational abuse/oppression, and which can be terribly traumatic (re-traumatizing) when seeking empathy and support.

        THAT is the mental programming that I would like to see deleted, this mind-set. Just to clarify…

    • Do these people want to drive us literally all the way insane, if we are not already there? It seems like that’s what they’re trying to achieve, with these comments. It’s like, if you’re already having severe issues and trying to stay afloat, the insane “mental health” system will finish the job and just completely obliterate you, mentally, psychologically, emotionally. If that’s not insane and sick, I don’t know what is.

  14. I was trained in peer work according to Shery Mead. Her Intentional Peer Support is the guideline that I use in determining whether or not I’m truly doing “peer work.”

    As far as I’m concerned, as a peer worker I support free choice for the people I walk with. My “answer” to things is not their answer for things. I can share what helped me but cannot impose that on anyone else. I am there to walk shoulder to shoulder with people, if they want me to walk with them. They determine the path that we will walk, not me. I don’t walk in front of them to try to drag them along and I don’t walk behind them trying to push them where I think they should go. I am available to people as a resource to use, if they so choose. I must always see each person I walk with as a unique, talented individual who can teach me many things. I am there with them to learn from them and in return perhaps they will learn some things from me. I am not there to “help” people since this implies that I have something they need and should be grateful to me for giving them. I am there as a fellow traveler in hopes that we all can learn something valuable in the process of spending time together.

    It is becoming ever more difficult to be this kind of a peer worker in the state where I live and work.

  15. Sera and others. This was an illuminating blog and thread for me. The program I work in developed its own training, is about making sure people are empowering themselves to make the changes they want to make. Perhaps it’s simply accepting themselves and how they see the world as it is. It may be about finding resources like the food bank or free vaccination clinics for their pets or accessing medical help for an infection that persists.

    Thankfully, I live in a small community obviously hasn’t had those expectations superimposed. I have yet to see the kind of “peer” support (non-peer support) to which you are referring. Perhaps that is the movement we are headed toward in the program we have at the ER.

    Believe me, I’ll be talking about this with the peers (not a dirty word yet here) with whom I work.

  16. Hear, Hear, Sera–I’m aligned with much of what you say. One issue is that the terminology is muddy and inaccurately used.

    As Chair of the Depression and Bipolar Support Alliance, and director/member of our local DBSA chapter, I beliebe “peer support” should only refer to group support, freely given, without remuneration or coercion, between people of like experiences. Like AA or Al-Anon, this is purely voluntary, and we seem to find relief, sympathy, empathy, friendship and laughter among our fellows.

    As for Peer Specialists, your description of what other mental health workers deem as the peer specialists job made me cringe. DBSA offers one of the few PS training programs recognized by the VA, but we also have issues with the lack of rigor, ongoing CMEs or educational pre-requisites for taking the training at all. We are working on that, but it will take time. Until that rigor is in place, PS will continue to face demeaning conditions in the workplace and the larger culture will continue to devalue and be dismissive of what PS could provide, not only to individuals in crisis or early stages of procovery, but to improving the medical model in general.

    So, it becomes important for us who have experienced mental health symptoms that have diminished our quality of life to take back the conversation for mental health and drive both the conversation and the terminology. Hooray for neurodiversity!–what doesn’t kill us, creates us, and we must be accountable for our lives. If we experience debilitating symptoms often, a WRAP or other such self-planning could be in order. We need to demand that providers/insurers, etc. have wellness as the goal. No one would expect a person who has experienced cancer to settle for a little cancer! Also, to promote a focus on wellness instead of illness–the research coming out of Positive Psychology is helpful here. And we have to demand protocols and practices that put us in charge, from lifestyle choiceslike meditation, yoga, movement and nutrition to Open Dialogue, DBT, CBT and newer therapies that harness the power of our brains to change themselves.

    Personally, I don’t find the labels very useful. They are descriptors that tend to pathologize the human condition, more so–it seems–every time an new issue of the DSM is published. So again, “peers” (for lack of a better term–I too can’t stand consumer… prosumer? client?) must lead the conversation for mental health wellness, define or redefine or invent the terminology so that the contribution of the whole human being erases the limitations others would put upon us. Thank you for your passion and fire!

    • This thread is making me REALLY think about how I manage my wellness, how many things have been suggested to me–meditation, yoga, med compliance, WRAPm “Sources of Strength:, “rewinding”, EMDT, the list goes on. Mental health professionals AND peers have suggested those things. I typically set suggestions aside and look for my own inner guidance. The most powerful peer connections I have come with no suggestions at all–loving support and validation build my confidence and ability to identify more options.

      Rigorous standards and education requirements IMO would take the power out of AA and Al-Anon. “Take what you like and leave the rest” works for me in most settings.

      While training is important, IMO it’s should be about looking at wellness from a personal experience, allowing each person to examine how we have improved and created wellness, realizing those have been very personal decisions. Effectiveness comes from taking THAT into the “peer” role (whatever it is).

      What I get from true peers (not required or expected to suggest anything) is LISTENING to my story while thoughtfully reflecting on how they, too can gain from my experience. If a person listens AS a peer with no proscribed agenda, the suffering person’s thought loops evolve into small step, realistic solutions that are true to their own wisdom.

      IMO, structure, rigor, requirements can exclude the people whose willingness to take the time to listen makes all the difference. (AA and Al-Anon as examples. I don’t have to read to be an excellent sponsor.) “Education” and TMI on the part of the peer counselor (or specialist) can kill the conversation and undermine the power of connection. We play along with the system whenever we use a packaged program to help “fix” someone else.

    • Lucinda: I looked over your posts, and see your use the term neurodiversity quite often, and you say it comes from Autism terminology..

      If your are going to use a scientific term which refers to neurons, I wonder how much of the scientific data you are articulately referring to. One thing that’s turns up with autism consistently is the damage to the intestines (which are made out of the same cells as the brain, the intestines being called the second brain). And how much vaccines correspond with causing such damage, which is also effects the brain. And in “mental illness” the only true sign of “neodiversity” in a scientific sense is what is caused by the medications. People who are “treated” with psychiatric medications HAVE a form of “neurodiversity,” this can be addictions, brain damage, a disabled brain, loss of life and also dependency on a controlled substance to avoid withdrawal symptoms. If you are going to speak of “neurodiversity” in such a context, are you also going to refer to drug addicts, alcoholics, people with sugar addictions or who overindulge in other substances; and are you going to acknowledge that they also have “neurodiversity” and need to be accepted for who they are, that because of the trauma in their life they weren’t able to deal with, they sought to self-medicate themselves? This is the only “science” going on in reference to any “neuro” activity, that it is being disabled, by whatever means. And are you going to acknowledge that what are advertised as “psychiatric medications” don’t do anything more than disable the brain in the same way that “self medicating “does? That neurodiversity means people were told they have a chemical imbalance, treated, and then given one they didn’t have before this. Along with the people that chose for a chemical imbalance, that knew it. This is the science of what’s “diverse, according to what’s known as “neurodiversity.” But there wasn’t any “neurodiversity” to speak of before “treatment.”

      Is love making out a non proven theory that there’s a chemical balance being treated (rather than being caused by medications), heralding this as a cause (“neurodiversity”): is this really love, or is this a sly way the ego has of causing fear in people’s lives, and distracting them from actually attending to what’s going on in their life because they have “neurodiversity?” Although true recovery might not involve such complications, heralding a condition with a scientific name that doesn’t apply to it, whose treatment causes that very condition. True recovery might actually not involve banding together based on ideology that’s not been proven and is contorted in such a fashion, in order to create a concept of being a “peer,” people use to bond together.

      You said the following in a post: “As my Teacher says, there are two energies on our planet, fear (contraction) and love (expansive) and we have free will in any moment to choose. Finally, there is no “us” and “them”–we are all “we” as catalysts for one another’s awakening. It is fear that separates us from Ourselves and has us feel alone.”

      If we is not us and them (which I agree with) why are you heralding such a misleading title as “neurodiversity” which exactly DOES separate people into us and them, and does it in a way that’s pretends to be scientific, but has no basis in scientific fact.

      How is going on about the unsubstantiated sound-clip term “neurodiversity” helping people wake up? To me it’s confusing, on positive result is that then they might go elsewhere (including not needing help from the government for more money, for what hasn’t been shown to be helpful)? And how is this helping them express free will to see the difference between contraction and expansion? People who are the worst off, when they receive NO treatment, do statistically better, without drinking any of the Kool-aide, not toxic drugs, no “peer support,” no need to say they have “neurodiversity,” etc… They didn’t band together in groups and were given grants for such gatherings…..

      There might actually be some sort of difference in how the brain works of an artist, a psychic, a sensitive, a healer, a person able to see scientific logic that hasn’t been acknowledged in mainstream doctrine; and more people of “diversity,” however the kind of disabling of the mind that’s taking place, and the kind of patting on the head when a person has adapted to statistical based norms, salience with consensual reality comportment, and what is done in the name of “mental healthy” really attempts to counteract all such. And fortunately it’s only theory that there’s anything different in the brains of such people. From the way things go, that would only be made out to be a problem. I don’t know how many psychiatric drug advertisement I’ve seen trying to act like, having a time machine, they could have made Beethoven Van Gogh or who knows which great artist’s life easier: people who have been nurturing the collective consciousness for generations, without “treating” a chemical imbalance which hasn’t been proven to exist, and causing an epidemic. But what true science has PROVEN is that the biological problem is what the treatment has done, and WOULD HAVE done, a chemical imbalance which wasn’t there before. Treatment leads towards addiction, disabling, more relapsing, less recover, loss of life, loss of self initiative, loss of creativity and loss of clear thought as well as a fear for emotional or conceptual responses which aren’t considered “normal,” and when turned off are considered healed, although you get addiction, disabling, more relapsing, less recover, loss of life, loss of self initiative, loss of creativity and loss of clear thought as well as a fear for emotional or conceptual responses which aren’t considered “normal.” Here I could have continued with ‘and when turned off are considered healed, although you get addiction, disabling’ etc. Bu I put an end to it there already.

      I find it inappropriate to use a term referring to the neurons of the brain as if there’s something biological going on, when this very focus distracts from the spiritual, emotional and empathic healing that has been shown to help.

      The whole term “neuro” heralds the whole biological method, which HASN’T found any true definite difference, but causes difference; and uses the whole idea of someone’s brain being different in order to say they are treating rather than causing difficulty.

      And again the reference to cancer is inappropriate, that’s a biological disease, not an alleged one that yet to be proven exists.

      And in your new post, you again make reference to “Brain” experiences, when this is only alleged, except for what medications do in causing brain malfuction, that IS proven.

      This, I think, was Sera’s whole point, the innapropriate use of the term Peer in order to be used as a means of preventing actually interaction between people. The ideology “neurodiversity” I find inappropriate when the very idea there’s something “neuro” going on has caused treatments to be promoted which actually CAUSE neurological toxicity, and this isn’t acknowledged AT ALL for the most part, and so this is, to me, extremely misleading us of the term”neuro” anything. Using such terms “brain” experiences or “neurodiversity” when this is terminology that has been used to deny the need for diversity, or has been used to deny what a brain experience is (disabling the brain with toxic substances, which is all that has scientifically been proven to be going on is NOT in any way treating a chemical imbalance). And then people are judged on whether they use ab accepted form of brain numbing or not; and those that don’t are stigmatized. Getting together to talk about what science has proven to be going on, and how the drugs were disabling, this accurately might be about brain experiences. Or talking about how changing their diet helped. But bringing in concepts about “neurodiversity” in order to put the focus on a biological something, when people need to be able to talk about their emotional experiences, as thought rather than the result of some yet to be proven theory; which distracts from the focus on thought, on emotions, on sharing, on actual experiences, on perspective, on feeling safe to be able to really express what went on and promote letting go and an understanding of trauma rather than exploiting it to control people with “discipline.”

      • Since there’s no edit button, I’ve edited this. I just simply really think that it’s out of place to start using the term “neurodiversity” when the toxicity which effects nerves, effect neuroactivity, and which is going on in treatment, or from other sources that aren’t acknowledged is suppressed.

        Lucinda: I looked over your posts, and see your use the term neurodiversity quite often, and you say it comes from Autism terminology..

        If you are going to use a scientific term which refers to neurons, I wonder how much of the scientific data you are articulately referring to. One thing that’s turns up with autism consistently is the damage to the intestines (which are made out of the same cells as the brain, the intestines being called the second brain). And how much vaccines correspond with causing such damage, which is also effects the brain. And in “mental illness” the only true sign of “neodiversity” in a scientific sense is what is caused by the medications. People who are “treated” with psychiatric medications HAVE a form of “neurodiversity,” this can be addictions, brain damage, a disabled brain, loss of life and also dependency on a controlled substance to avoid withdrawal symptoms. If you are going to speak of “neurodiversity” in such a context, are you also going to refer to drug addicts, alcoholics, people with sugar addictions or who overindulge in other substances; and are you going to acknowledge that they also have “neurodiversity” and need to be accepted for who they are, that because of the trauma in their life they weren’t able to deal with, they sought to self-medicate themselves? This is the only “science” going on in reference to any “neuro” activity, that it is being disabled, by whatever means. And are you going to acknowledge that what are advertised as “psychiatric medications” don’t do anything more than disable the brain in the same way that “self medicating “does? That neurodiversity, would hit have any true scientific validity, means people were told they have a chemical imbalance, treated, and then given one they didn’t have before this. Along with the people that chose for a chemical imbalance, that knew it. This is the science of what’s “diverse, according to what’s known as “neurodiversity.” But there wasn’t any “neurodiversity” to speak of before “treatment.”

        Is love making out a non proven theory that there’s a chemical balance being treated (rather than being caused by medications), heralding this as a cause (“neurodiversity”): is this really love, or is this a sly way the ego has of causing fear in people’s lives, and distracting them from actually attending to what’s going on in their life because they have “neurodiversity?” Although true recovery might not involve such complications, heralding a condition with a scientific name that doesn’t apply to it, whose treatment causes that very condition. True recovery might actually not involve banding together based on ideology that’s not been proven and is contorted in such a fashion, in order to create a concept of being a “peer,” people use to bond together. And there would be no need to add onto this already confusing terminology the idea that evolution is taking place (either aided or inhibited by the “medications”).

        You said the following in a post: “As my Teacher says, there are two energies on our planet, fear (contraction) and love (expansive) and we have free will in any moment to choose. Finally, there is no “us” and “them”–we are all “we” as catalysts for one another’s awakening. It is fear that separates us from Ourselves and has us feel alone.”

        If “we” is not “us” and “them” (which I agree with) why are you heralding such a misleading title as “neurodiversity” which exactly DOES separate people into us and them, and does it in a way that pretends to be scientific, but has no basis in scientific fact?

        How is going on about the unsubstantiated sound-clip term “neurodiversity” helping people wake up? To me it’s confusing, one positive result is that then they might go elsewhere (including not needing help from the government for more money, for what hasn’t been shown to be helpful). And how is this helping them express free will to see the difference between contraction and expansion? People who are the worst off, when they receive NO treatment, do statistically better, without drinking any of the Kool-aide, no toxic drugs, no “peer support,” no need to say they have “neurodiversity,” etc… They didn’t band together in groups and weren’t given grants for such gatherings…..

        There might actually be some sort of difference in how the brain works of an artist, a psychic, a sensitive, a healer, a person able to see scientific logic that hasn’t been acknowledged in mainstream doctrine; and more people of “diversity,” however the kind of disabling of the mind that’s taking place, and the kind of patting on the head when a person has adapted to statistical based norms, salience with consensual reality comportment, and what is done in the name of “mental healthy” really attempts to counteract all such. And fortunately it’s only theory that there’s anything different in the brains of such people. From the way things go, that would only be made out to be a problem. I don’t know how many psychiatric drug advertisements I’ve seen trying to act like, having a time machine, they could have made Beethoven Van Gogh or who knows which great artist’s life easier: people who have been nurturing the collective consciousness for generations, without “treating” a chemical imbalance which hasn’t been proven to exist while this correlated with an epidemic. But what true science has PROVEN is that the biological problem is what the treatment has done, and WOULD HAVE done, a chemical imbalance which wasn’t there before. Treatment leads towards addiction, disabling, more relapsing, less recovery, loss of life, loss of self initiative, loss of creativity and loss of clear thought as well as a fear for emotional or conceptual responses which aren’t considered “normal,” and when turned off are considered healed, although you get addiction, disabling, more relapsing, less recovery, loss of life, loss of self initiative, loss of creativity and loss of clear thought as well as a fear for emotional or conceptual responses which aren’t considered “normal.” Here I could have continued with ‘and when turned off are considered healed, although you get addiction, disabling’ etc. But I put an end to it there already.

        I find it inappropriate to use a term referring to the neurons of the brain as if there’s something biological going on, when this very focus distracts from the spiritual, emotional and empathic healing that has been shown to help.

        The whole term “neuro” heralds the whole biological method, which HASN’T found any true definite difference, but causes difference in a negative way; and uses the whole idea of someone’s brain being different in order to say they are treating rather than causing difficulty.

        And again the reference to cancer is inappropriate, that’s a biological disease, not an alleged one that yet to be proven exists.

        And in your new post, you again make reference to “brain” experiences, when this is only alleged, except for what medications do in causing brain malfuction, that IS proven.

        This, I think, was Sera’s whole point, the innapropriate use of the term Peer in order to be used as a means of preventing actually interaction between people. The ideology “neurodiversity” I find inappropriate when the very idea there’s something “neuro” going on has caused treatments to be promoted which actually CAUSE neurological toxicity, and this isn’t acknowledged AT ALL for the most part, and so this is, to me, extremely misleading us of the term”neuro” anything. Using such terms “brain” experiences or “neurodiversity” when this is terminology that has been used to deny the need for diversity, or has been used to deny what a brain experience is (disabling the brain with toxic substances, which is all that has scientifically been proven to be going on is NOT in any way treating a chemical imbalance). And then people are judged on whether they use an accepted form of brain numbing or not; and those that don’t are stigmatized. Getting together to talk about what science has proven to be going on, and how the drugs were disabling, this accurately might be about brain experiences. Or talking about how changing their diet helped or other physical activities. But bringing in concepts about “neurodiversity” I find convoluted when this puts the focus on a biological something which is unsubstantiated, when people need to be able to talk about their emotional experiences, as thought rather than the result of some yet to be proven theory; which distracts from the focus on thought, on emotions, on sharing, on actual experiences, on perspective, on feeling safe to be able to really express what went on and promote letting go and an understanding of trauma rather than exploiting it to control people with “discipline.”

    • Jacinda,

      For quite some time there has been much evidence that DBSA like NAMI and CHADD is a Big Pharma front group pushing nefarious goals like passing the Mother’s Act to push more useless, dangerous SSRI’s and other drugs on new mothers and “indirectly” on their children. There have been many tragedies among new mothers as a result of this debacle. Think Andrea Yates when considering the role of dangerous psychiatric drugs forced on mothers without informed consent charged with young, trusting, helpless children and babies no less.

      Therefore, it seems that DBSA would have a difficult time being objective about any mental health treatments that did not include mainstream biopsychiatry and its dangerous drugs and similar “treatments.”

      Also, it is pretty well established that SSRI’s and other psychiatric drugs cause mania, suicide, violence and a host of other life destroying iatrogenic harm used to blame and stigmatize the victims with bipolar disorder. Dr. David Healy exposes this debacle in his great book, Mania: A Short History of Bipolar Disorder, as does Bob Whitaker in his books and articles and many other experts.

      http://uniteforlife.wordpress.com/2009/03/25/dbsa-front-group-and-mothers-act/

      Can you comment on the above?

      • Just a cautionary note about singing the praises of David Healy too loudly: the esteemed Dr. Healy’s mission against meds is equalled only by his passion for promoting ECT. And there’s a reason for that: he’s part owner of one of the largest manufacturers of ECT equipment.

    • I did touch upon the idea of diversity today, that unity comes from diversity (all of it), actually.

      Beyond all the words on my other post(s).

      http://oelte.wordpress.com/2013/09/05/dscf0679-jpg/

      And today’s lesson from ACIM (A Course in Miracles) is (238th day of the year is today, I think): http://acim.org/Lessons/lesson.html?lesson=238

      After going to the soup kitchen, which I do occasionally, so I have enough left over for vegetables; I went to the ministry where you can do art, for free. And I usually work on my A Course in Miracles exercise or the text, in a leisurely way. So, in just looking at what images appeared in my mind, and playing with them, this (there the link up there) came out.

      I really think that’s what being a peer is, because it’s not being glued together by some addendum. It happens: we’re experiencing the same thing, without others or even ourselves having to define it. And you’re welcome Lucinda.

  17. Hi Sera–apologies for not being clear. I think we are aligned here.

    Within the peer-led support community of DBSA, the support group model is like AA (without the 12-steps) and purely voluntary, thus unpaid. No curriculum. Discussion in any support group is determined by the needs or interests of the group in the moment. Our national umbrella organization has paid staff to create/maintain the website, develop and deliver programming (like leading Peer Specialist trainings to the public and VA, ostensibly for graduates to be hired and get paid) as well as provide resources, information, etc. We do not support any single system for wellness, though the medical model, alternatives, lifestyle practices, work and career, various therapies, etc are all discussed. Our focus is on self-determination, and that people who have experienced symptoms live a life they love however they define it and however they achieve it.

    Like life, our community is diverse and complex and there is room for everybody who wants to or declares to be a part of it.

    Speaking for myself, I don’t like labels because of the assumptions in the listening of others it can promote. And yet, we do need to have/develop language that captures our lived experience. Personally, my commitment is to create a context and language that transforms how mental health and wellness are viewed, and by example removes the pathologizing of the human condition that seems to be the expanding direction of the medical model. I take meds–in small amounts they work for me, and I know for others, meds are problematic if not detrimental. And, I have strengths and resiliencies that people who have not experienced depression or mania do not have. Focusing on these, and having lifestyle practices and work that I love makes the label of “bipolar” an aside to who I am in the world.

    As for peers being paid or unpaid–organizations like M-Power (and yours?) have paid employess, most of whom have experienced brain symptoms that interfered with their quality of life as they define it. They are putting their lived experience and personal skills (education, work skills, etc.) in service to our community in a variety of ways. I don’t believe that paying someone to be a Peer Specialist necessarily interferes in the “peer to peer” relationship. It all depends on how an individual peer specialist relates to him/herself professionally and in relationship to their clients. It’s no different in any pay-for-service situation. So, as a client, shop around for a person who provides the service you are looking for, and make sure s/he is a fit for you. Sometimes, the relationship may work well at first, but then not. So, keep looking. And Peer Specialists themselves need to know what they are for, and stand for what they provide in the clinical or non-clinical setting. This is new territory and it will take awhile for employers of Peer Specialists to deploy them in a way that makes a difference for clients and the larger therapeutic team in which the peer specialist works.

    Peer Specialists will benefit from forming a professional organization to begin to establish who they are and what they provide in this business setting. Helping profession or not, clinics, hospitals, etc. are still operating within a capitalist model (no judgement, just what is so) and Peer Specialists will need to prove they add value to the business of mental health care as it is set up now. And how Peer Specialists grow in their professional development will not only make a difference in how mental healthcare is practiced, but transform the view of people who have had mental health issues.

    So much more to wrestle with, discuss and ponder. Thank you for your inspiration!

  18. “I’m not sure the point of a really large group of people united in name only. It’s the values and the purpose that count.” -Sera

    Hello Sera,

    Love this article you wrote. Glad you were inspired to write it. However, when it comes to groups being united in name ONLY, proper use of the name usually stands for pride, hope, encouragement, unity, etc. I found much of what you had to say quite intriguing but also a bit bothersome. I was annoyed that you’d put down the use of the terms, “peers.” To finally come to a term that many of us feel comfortable with is HUGE, in my opinion! To finally make it this far in the accepting of such a term shows progress in a movement that is known to make one step forward and three steps backwards.

    You should know that I came into the psychiatric movement 13 years ago. As a “foreigner” when I first heard the use of the term consumer to describe me as a patient I cringed. When I looked up the definition of consumer in the dictionary, I almost hurled. What stood out for me as a consumer, besides what we know a consumer to be, was someone who consumes something without giving back in return. As a giver and not a taker, in many respects I never saw myself as just as a person who consumes. So you see, for me that didn’t work. It still doesn’t! I respect its use for those who are comfortable but I always felt that there was more for us in the psychiatric field than to just ‘consume’ pills or leach of the system for our medical and personal needs. Since then I have been fighting outwardly and openly to have those of us who had similar experiences grow (up) from that term, “consumers.”

    During my recovery I found respite as a place that sadly lost its funding to exist called the PEER Center. The acronym P.E.E.R. in PEER Center stood for Personal Empowerment, Education and Recreation. I was so proud to be member. I met friends whom I am still in contact with today. I connected with like minded individuals where our very own family and community ostracized us. So you see the use and promotion of the term “peer’ is very personal to me. To hear that in your community somehow you find the use of peers’ offensive, personally, disturbs me. However, with knowing that a peer is now an acceptable term even within our military and in other places brings a smile to my heart.

    Peer to me is like a mission statement. A mission statement is an official statement of the aims and objectives of a business or other organization. Peer, as an organization of people, is a wonderful word that embodies a declaration just as eloquently as you stated when you said, “It’s the values and the purpose that count.” Peer to me means exactly that: we have value and purpose in this world! It’s not until we are a large enough group that stands for its value and purpose that we’d even be recognized. We still have a long way to go from where we came as psychiatric survivors, patients, consumers, or whatever term you’d like to use or not use. Still, as peers we must begin seeing ourselves as trailblazers in this movement. I want you and others reading this post to remember that. I also want you to keep in mind that by being p-eers we make room to grow-up and see ourselves as p-ion-neers. Include the 3 letters “ion” into p-eers and maybe you can see yourself as I do and your very own personal role within the movement.

    By definition here is the meaning of, pi•o•neer

    1. One who ventures into unknown or unclaimed territory to settle.
    2. One who opens up new areas of thought, research, or development: a pioneer in mental health.
    3. A soldier who performs construction and demolition work in the field to facilitate troop movements. (Mad Pride comes to mind)
    4. Ecology An animal or plant species that establishes itself in a previously barren environment.
    adj.
    1. Of, relating to, or characteristic of early settlers: the pioneer spirit.
    2. Leading the way; trailblazing: a pioneer treatment for severe mental and emotional condition is in the works.

    My newest acronym for P.E.E.R.: Person Experiencing Emotional Recovery.

    Keep up the good work, Sera. Keep the articles coming! Be more positive about peers and the peer movement. After all, when it comes to being positive, as in protons, neutrons and electrons, the more ions’s we have the better. It vibrates and speeds up the momentum behind what caused or causes our experiences. This a metaphysical statement and one that requires a deeper level of thought and conversation.

  19. I am from the Netherlands. I recognize what you describe.In the Netherlands the trend is similar to what you describe.

    The last 5 to 7 years more CPS training programmes have been developed by mental health care professionals. These programmes are based on what mental heatlth workers learn when they are educated. The peer workers are involved in the process of developing the programme but these peer workers are invloved as they have protoprofessionalized. Oftentimes they start training the peer workers without any knowledge of teaching. Furthermore they are given positions in commmittees, boards, and similar things so as to make them feel important. In other words feeding the ego gratification of these peer workers.

    The peer workers do sometimes follow some course so as to get started but the training is limited and often lacks educational quality. Examples of this are that in most cases there is no assessment whatsoever. It is often just a matter of attending ten to twelve lessons and then you passed the course.

    The mental health care institutes had to deal with many scandals and scandals continu to be made public. The general public has little faith and trust in these institutions therefore they try to attract peer workers which are often not trained as peer worker or not very critical, and not critical thinkers. They often find it more important to have a job, better financial position, being friends with your colleagues, avoid conflicts, value status, value their financial freedom, are not critical to current abuses at work, do not report abuses by non-peers from work. They also want to learn more and more about psychopathology, DSM and other medical model thinking.

    In effect this has led to them being protoprofessionalized but they are no longer able to see this. They have been using the words and the jargon in the medical model for so long without being actively critical just to conform to their non-peers that they have lost touh with why they started working as a peer worker to begin with.

    These peer workers have become the role models the mental health organizations want to praise for being good at their job. As a result the peer workers start endorsing their non-peers. This process of endorsement is what mental health institutes want. They wan the endorsement so as to be in the good graces of the public and the politicians. They are making a statement “Look at how many peers we employ and what excellent recovery based care we provide”.

    For a book I am writing about peer support (education) worldwide I reviewed and looked into the developments and trends and realized that many countries have the same problems which exist in the Netherlands. I think peer workers should be prepared better for the working conditions they encounter when they start working as a peer worker. So far I have heard from peer workers and peer work researchers in many countries that the mental health institutes are trying to conform the peer workers into regular mental health care professionals. So far I have only seen a few examples of countries where peer workers have become critical thinkers and real change agents.