Peer Supports Under Siege:
A Call for Help and Solidarity
(And how this affects you, too)

Sera Davidow
90
188

One of the great challenges of working as a legislator is finding time… time to get to know what things look like from the inside… time to get to know what’s really helping people verses what just sounds good… time to recognize that what sounds good has often been made glossy and shiny more by money and marketing and less by substance and what’s real.   Time can be a curse when you’re always running short of it.  It can be hard to place blame or point fingers given the heavy demands on the average politician, yet the consequences of that lack of time have the potential to be fairly dire.

Not surprisingly, the Massachusetts Mental Health System is currently experiencing a budget crisis.  Why?  I’m not entirely clear, but it has something to do with “Chapter 257.”  What the heck is Chapter 257?  I’m still trying to figure that out, too, but here’s a one-sentence explanation offered by the ‘Campaign to Strengthen Human Services.’

“Chapter 257 of the Acts of 2008 is the historic act that reformed how the Commonwealth pays for essential social services for our most vulnerable residents. It was passed unanimously on roll call votes by the Legislature to address more than 20 years of chronic underfunding of the human services system.”

Notice the year:  2008.  As these legislative mandates are prone to do, the implementation has dragged on.  Then comes Judge Mitchell Kaplan who, on January 15, issued a final order that Chapter 257 must be fully implemented by July 1.  Now, ordinarily, improved rates following “years of chronic underfunding” would sound great.   But, here’s the catch:  When you raise rates, but don’t increase the overall budget… Well, something’s got to go.

Yes, we knew something would be ‘going.’  However, even with that knowledge, we thought we were safe because peer-to-peer supports in the state represent such a comparatively miniscule piece (well under 1%) of the proverbial pie that any cuts would decimate our ability to function while not really making much of a dent in the overall debt.  Unfortunately, new Governor, Charlie Baker, holds a different perspective.

Up until March 4th, we though we were safe.  We had no idea where budget cuts were going to land, but we knew they weren’t going to land on us.  Unfortunately, on March 5th, we learned that the Governor’s budget proposal included a 50% cut to all Recovery Learning Communities across the state.  50%.  That’s 1.7 million dollars.  Half of our state-funded budget.  We had somehow awoken in Oz and Dorothy’s house was hurtling out of the storm and – instead of at a more appropriate target (one that might have some hope of withstanding such a blow) – it was headed straight toward us.

Let me back up for a minute.  For those of you not in the know, there are six Recovery Learning Communities (RLCs) in Massachusetts.  They are based in the Central, Boston, Metro Suburban, Northeast, Southeast and Western areas of the state.  Each RLC is then asked to cover that entire region within which they are based. You’ll usually see me writing about the Western Mass RLC because that’s where I find my ‘day job,’ and our area (for example) covers four different counties.

The RLCs were first funded beginning back in 2007 and following many years of advocacy from individuals who’ve been through the system, been diagnosed, experienced trauma, and – one way or another – come to understand the value of peer-to-peer support.  They were funded with the goal of building peer-to-peer communities that can facilitate healing, connection, learning and systems change as led by those who have ‘been there.’ We’ve gained steam rapidly ever since we were ‘born.’

Now, don’t get me wrong.  I have lots (and lots) of criticisms of peer-to-peer support as it exists in this country, and it would be silly of me to pretend otherwise.  For example, see my blog, ‘In Peer We Trust.’ In that blog I focus, in part, on states where the nature of peer support has suffered for having been made Medicaid reimbursable, as well as on one study where peer support has somehow been warped into ‘case manager aides.’  It’s true that peer support often lacks integrity and vision.  It gets twisted and confused about as often (or more) than not.

But all peer-to-peer support need not be that way, and I believe in what we’re doing.  Although, as a rule, we do not employ invasive outcome measures, when we do take time to review our efficacy, we are getting great results (see fact sheet here). More importantly, every day, I see or hear the difference we’re making not just with individuals who are struggling in some way, but also with the broader community.  And, in the words of Daniel Mackler in Beyond the Medical Model, “I trust people way more than I trust studies.”

We’re making waves on the national front, too.  See the mention of the ‘Hearing Voices Network’ in this vitriolic post by one of my <sarcasm>fave Huffpo authors</sarcasm>, Susan Inman?  That’s the Western Mass RLC she’s talking about nine paragraphs down when critiquing the Hearing Voices Network workshop at Alternatives 2014.  (I consider a little hate mail or critiquing by the likes of Inman to be a sure sign we’re squarely on target!)  People from states as far as Arkansas and Oregon have also contacted us to learn about our approach, and people have traveled from Texas, California, Florida, Idaho and more to take our trainings.  We’re not perfect.  We’re forever learning and growing.  But we’ve got something going on here that’s worth preserving.

So, why us?  Community Based Flexible Supports (the latest title for what are essentially residential mental health services) in the state have a budget of about 260,000,000 million. A cut of 1,700,000 million would represent only 0.65% of their total budget. Clubhouses across the state have a budget of (as best as I can surmise) around 22,500,000 million. A cut of 1,700,000 million would represent a somewhat larger but still comparatively small 7.50% of their total budget. In other words, they’d survive. I’m not sure the residential services would even feel much of a pinch over a less than 1% cut. But the RLCs? 50% isn’t a cut. It’s an incapacitating blow.

Am I arguing that Community Based Flexible Supports and/or Clubhouses be cut in our stead?  That’s not really my point.  Moreso, I’m wondering the motivation behind expressly issuing orders of protection over services that would be much more minimally impacted, while essentially cutting the legs out from under a support that already makes up less than one half of a percent of the state’s total mental health budget.  The man behind the decision is so new to his position as Governor that he can’t possibly fully comprehend the very real people he’s hurting or how much. But, while I’m attempting to have some compassion for the difficult position he’s in with a situation he has more inherited than created, I can’t help but assume that this must somehow boil down to how he (and so many others) see and value (or don’t) ‘peer supports.’

It doesn’t matter that peer supports in general continue to come out on top in every research study I’ve found, or that the RLC where I find my home is doing cutting edge work that has attracted even international attention. Peer supports don’t typically matter to the general public (at least not this kind).  They’re forever seen as ‘less than,’ even by most people who smile and nod away while we’re testifying to their powerful impact.

Here’s the crux of the problem as I see it: The way many people understand the ‘power of peer supports’ is akin to how they understand ‘recovery.’ That is to say, they see it on a categorically different scale. What do I mean by that? Well, the average person seems to define ‘recovery’ on a scale especially made for people who have been given diagnoses, and that scale tops out way before it reaches what they would see as ‘normal’ success for the average citizen. (This is a prime example of why I don’t particularly tolerate the term ‘recovery’ well myself. See my blog on that subject called, ‘The Recovery Trap.’) Ditto peer support.

The invisible scale they’re using to measure what it means for peer supports to have ‘positive impact’ is simply set at a much lower bar than any conventional mental health service. And, it doesn’t matter one bit that a growing number of people are saying it’s often the reverse; that it’s the alternative supports that saved them while the conventional supports played only a supporting (if any positive) role. Those are just the ‘crazy’ people talking, after all. If they lack insight into themselves, why should we trust them to tell us about what works as far as the system is concerned?

And this is why our plight should matter to you. All of you. To an objective person, it’s pretty undeniable that peer-to-peer supports – at least when offered with integrity and clarity of vision – have real impact, and not just on their own patronizing and watered down scale.

But what’s ‘real’ doesn’t always matter when you’re the one in power. There’s no requirement that those in power even take the time to ask around or do any sort of reality checking of their own belief system whatsoever. And, we need all of our voices to come together to challenge that sort of power in order to have any sort of hope at all.

To the best of my knowledge, the majority of people who hang around these ‘Mad in America’ parts are particularly interested in prioritizing, promoting, and creating access to (true) alternatives, including those built upon peer-to-peer supports. But, whenever one of us falls, it becomes that much easier to knock the next one down. We need more examples to point to, not less; more places to reference and say, “If they can do it, why can’t we?”; more places to call upon and say, “If you don’t believe us, how about them… or them… or them?”

If we fall, I hope you will all see it as a little bit of you falling, too. And, along those same lines, if we come out of this threat whole, we hope you will all share in the success.

Right now though, more than anything, we hope you’ll stand with us in the fight.

To help advocate for the RLC budget to be fully restored, you can:

  • Call or e-mail Massachusetts Representatives to express your concern (particularly those on the Ways and Means Committee!) and ask them to make restoring the full RLC budget one of their priorities. If you’re a Massachusetts resident, all the better, but support from any source counts!
  • Share this blog and/or the resource information below with your various networks and websites!
  • Leave messages of support or any strategies you might suggest below (This will not only support us directly, but also serve to keep this blog active and more visible!)
  • Check back frequently to the RLCs Website for updates on our progress and additional ideas of how to support our efforts

 

Sample Statement to Representatives

RLC Fact Sheet

RLC Press Release

RLC Impact Statement

 

House Ways & Means Committee

Senate Ways & Means Committee

Massachusetts RLCs Website

90 COMMENTS

  1. Sera, I see your point about not judging ALL of peer support based on one or two bad examples of it. However, where are the good examples? Back around 1990 or maybe a year or two earlier, I had a “befriender” who also had had an eating disorder. She insisted that if she can rid herself of an ED, anyone can. I believe she had spent too many years away from the problem to be able to empathize with me or any sufferer. After a month or two, she quit. I didn’t think much of it but when I called the Anorexia Nervosa Aid Society, I was told that befrienders weren’t supposed to quit the way she had done.

    I’ve been exposed to other forms of peer support. The most successful seems to be AA. The idea that many can come together to solve a common problem seems like a terrific step in finding a common solution.

    My experience of the RLC’s in Massachusetts was mostly negative. I tried out three or four. They all seemed modeled after day treatment. I didn’t want this at all. After three decades stuck in the mental health system, I was now sitting in a room where someone was teaching us how to breathe. I stayed in the group till the end, and said nothing because I didn’t want anyone else put off. Truthfully, though, I found the scene terribly insulting. I figure if this is an empowerment center, we should be writing letters to lawmakers and making political calls all day. I was disappointed that activism was discouraged and the “staff” wanted only for the “clients” to keep the noise down. It seemed also like this was a place where parents dropped their adult kids off for “babysitting.” I didn’t want more “group.” I wanted to make a difference in the world, and going to the RLC was doing nothing for me but providing useless diversion, just like the day treatment programs.

    Then, I found out many “peers” get jobs working as “peer supports.” Only you had to have certification. Huh? Can’t I just fill in the application saying I was stuck in hospitals over 50 times an put on as many as eight medications at once to “qualify”? Isn’t being an ECT survivor enough? Never mind everything else in nearly 3-1/2 decades. I am leery of what is being taught in these workshops. What more is there to learn about life than what we have seen in hellholes called “psych wards”? Frankly, “training” to be a peer support makes no sense since the meaning of “peer,” as I understand it, is a person with lived experience.

    The WRAP program has no relevance to a person with anorexia or similar eating disorder. In fact, I found WRAP to be limiting and also just as insulting as many of the other techniques. It’s just more therapy. I don’t buy into therapy anymore, nor will I ever again bow down to a clinician in the name of “help.”

    if peer support is really going to work, I say cut the “training” out of it and respect us for who we are and how far we have come.

    • Julie,

      I hear you, I really do, on a lot of levels. I honestly think that we provide good examples to show you. Don’t take Sera’s word for it though, or mine, come and see the work that we are doing if you are skeptical. I’m not sure if you are still in Massachusetts but if you are or if you are close I hope that you can come and spend some time in our community. I’m not from Western Mass, I’m from the Boston area and I moved here knowing no one and having really sort of nothing. It’s a weird place, I’m not sure if you’ve been here. It feels like the damned boonies to me. I miss the city. I want to go home. And yet, how can I leave this community? This place is like nothing that exists anywhere else. And I’ve seen other places! Not just here in Massachusetts but all over and nothing looks like this. And it isn’t perfect! It isn’t perfect but it’s real and it works for a lot of people. It’s like this oasis out in this strange place. I feel lucky all of the time to be part of this community. I can’t imagine it not continuing to grow and thrive the way that it has in the almost 3 years that I have been here.

      I don’t have a certification. I don’t have any degrees. These things matter to so many people in so many places. I know so well how people don’t listen to me for these reasons. I am aware of that and I also don’t care. I am a college drop out and I am a Certified Peer Specialist drop out. I am also the team coordinator at this amazing place called Afiya. I also chose to become an Intentional Peer Support trainer, something that isn’t the certification that DMH wants (CPS) but is something that I personally believe in wholeheartedly. It was a choice and not something forced upon me. Yes, DMH wants CPS and so do a lot of other places I am sure.

      I will not go so far as to say that cutting the training out is the answer, there are so many valid trainings out there that I have chosen to go through and that are not required but that really help to be able to support so many different sorts of folks. Some examples that I feel that I have benefited from are Hearing Voices, Alternatives to Suicide and Intentional Peer Support. I have experiences with hearing voices and feelings of suicide but that isn’t always enough. I believe that valuable trainings plus your own experiences support you to be solid in your role as a “peer” (I don’t like that term) advocate.

      Also, I don’t believe that most of us here cut down on the activism piece! I believe you that a lot of places do but we aren’t a lot of places. Some of us are pretty radical! If you want to make a difference in the world, I say go for it! I hope that you find the right community to join up with or that you strike out on your own and succeed with that! It’s a noble cause! I believe that we are doing just that here and I hope that we can always continue to do so!

  2. The issues of economics and funding are so complex and controversial in the mental health world, especially because there is so much controversy and confusion about in what direction to go that would be most positively impact people–that is, where will the funds be best utilized as an investment in our future collective well-being? That’s where the fighting begins, whereas, really, who could ever know the answer to this?

    Ironically, in the end, money really has nothing to do with alleviating suffering, and, in fact, fighting over it is what CAN lead to suffering for some people. Whereas accessing our creativity does, indeed, go a long way toward discovering our own resourcefulness, from within, and this heightened awareness of ourselves brings great relief from the stress of financial worry.

    Sometimes, fate delivers the opportunity to fully tap our inner resourcefulness, right to our doorstep.

  3. I guess I had the wrong idea when I went to the RLC’s I tried out. I had thought they were antipscyhiatry. However, this wasn’t true at all. Most everyone went to “therapy” and took “meds.” Most clients and some
    “staff” regularly went in and out of hospitals “for a med adjustment” or “a tune up” or “a rest.” I suppose seeing people popping pills and hearing them talk about same ole same ole caused me, ultimately, to conclude that the RLC”s that I attended were pro-hospital, pro-insurance, and pro-big pharma as well. If anyone was political about anything, it was, “Why can’t we have more services because we are bored.” I told myself I needed something far more radical.

    • I might feel similarly in some ways if I’d had your experiences with RLCs. I don’t know which ones you went to, but it might be that they are not all created equal. I have heard from people who loathe some of them but love the Western Mass RLC. I would argue that, from what I’ve read and from what I’ve been told by people with experience of it, what Western Mass RLC does IS pretty radical and it needs to be defended.

  4. This is horrible news. I’m not in Massachusetts, but I do know people who are and whose lives have literally been saved by participating with the Western Mass RLC.

    This is from the sample letter linked to above, for the sake of readers who might not be inclined to click through:

    Recovery Learning Communities support thousands of people each year in avoiding hospitalization, searching for work and housing, addressing substance abuse issues and finding meaningful roles in their communities. Recovery Learning Communities save tax payers hundreds of thousands of dollars by reducing 911 calls, emergency room visits and hospital stays.

    Recovery Learning Communities are the only supports funded by the Department of Mental Health that are easily accessible without wait list
    s or a referral or eligibility process. Every citizen of Massachusetts in need of immediate support can get help at a Recovery Learning Community.

    Politicians and others need to understand that this support is not some kind of non-essential “add-on” or frill for people seeking help with mental/emotional problems. It saves the state tons of money and, more importantly, it is crucial for the well-being of the people it serves.

  5. To anyone it may concern–

    I have a lot of criticisms and counter points with regard to peer supports as a whole, and massive problems with the idea of “recovery” and how its (loosely defined) presence or absence adds to or negates from the value of an individual.

    Would I ever take government money for work I do? Would any government funded agency even have me? Those of you who have seen recent photos of me know I have a solid 50 pounds of body mass to lose before anyone needs to get really serious about those questions.

    These people at W. Mass RLC are my friends. I respect the work they do. Right now, I am going to shut the fuck up and write the Massachusetts legislature. I encourage anyone who reads this comment to do the same.

    Sharon Cretsinger
    Founder, Director, International Center for the Advancement of Anti-Psychiatry
    [email protected]

  6. I have been involved with Western Mass RLC for 10 months. At the time I found it, I was literally in the worst state of mind I can ever remember and was hanging on by my finger tips. I was shocked at first that someone might want me, with a psychiatric history, who had been hiding it all my adult life, to work with them and actually talk about what I had been through openly with others with shared experience. In my past professional work, I would have been fired for this.

    I can’t begin to express what healing has come to me because not only was I given permission to be genuinely where I was, but I found a wonderful community that I could relate and belong to. I feel inspired by being with others who have struggled and are healing and I feel inspired by being part of a group who are working to free all people from whatever constraints have been placed upon them. I discovered that belonging, free of judgement is a key to recovery.

    RLC is based on values of mutuality, respect, optimism, genuine human relationships, personal strength and self determination and creating a healing environment for all. We are not perfect, as we are human, but this is a completely different scenario then day programs or club house models. I/We are not saying that these offerings are wrong or bad. We are suggesting that there be an alternative present, just like someone choosing to take echinacea for there cold instead of night-quill. RLC supports the opportunity to step away from an old identity as a sick person and embrace the natural healing potential that is present in all people.

    RLC is a movement toward the evolution of human consciousness where no one is put into a box because of their personal choices, orientation, unique expression or history. This is the natural trajectory of things. It’s happening in all areas of life. To cut funding for this alternative, is breaking our movement forward. as a species. Why move toward a more limiting stance verses an expansive one? We are already on our way to a more gracious and accepting world. Why stop now?

  7. If the choice is between funding the current, admittedly less than vibrantly empowered, forms of peer support vs. funding the standard psychiatric treatment system, peer support wins out hands down. Even having it there as a token is a reminder to the system that “peers” exist as people and have voices and that recovery (or perhaps escape is the better word) is a very real possibility. Of course, it’s in some ways spit in the ocean, but if even a handful of people get more of the kind of support they need, it helps our cause.

    Can you imagine the difference between meeting for 15 minutes with a conventional psychiatrist and spending 15 minutes with Sera Davidow? Orders of magnitude difference in experience!

    Keep fighting, Sera!!!!!

    — Steve

  8. I’m sorry, I didn’t realize the Western MA one was so different. I am wondering if the ones in the other half of the state need to learn a lesson from you all. “Quit mimicking the day programs!” If a person/patient wants a day program, they can go to conventional medicine. I went to three different RLC”s in Eastern MA. There was no activism, just groups, or nothing at all. I felt like I was being “kept busy” doing useless tasks just like at the clubhouses. There seemed to be so many clubs and things you could join in Massachusetts, but nothing struck my fancy I guess. Sometimes at certain community clubs and functions I was told flat out I was not welcome.

    Sure you could use the funding. But can you ask the other RLC’s to shape up? Another thing, maybe you shouldn’t rely on state money, since the state backs traditional psychiatry only. Anything else is token just to look “liberal.”

  9. This post in many ways, describes the non-conscious nature of our “attachment” driven behaviours, with the basic assumption that we can only be “rescued” by others. Here I use the term rescued in the context of my therapist training, where the women in the group struggled with “not rushing in to rescue,” finding this natural urge difficult to let go of, in the face of another’s suffering.

    Its also an attachment drive, by which most adults get their sense of adult function, in our “paternalistic” rank & status society, which suffers from lack of insight into our subconscious, emotional projection process. Which, considering the changing “technological” times, may suggest that the internet is the best resource for support, providing the correct “insightful” information on how to “self-regulate” episodes of e-motive disruption, can be provided.

    While on global scale, I think the key words in your post are “lack insight,” in an era of a survival economy masquerading as community & society, where all the average citizen knows about their heart & brain, are the “words” heart & brain. Which, to me at least, speaks to the “existential” purpose of psychosis & the current epidemic of mental illness, in our so-called 1st world societies.

    Which from a spiritual perspective on how the bone headed denial of our own reality, has always driven the hyper-sensitives crazy, speaks to this communities role in Global change, as we face the challenges created by our own (humanity’s) self-ignorance. For example; from a Christian perspective of that famous musical “Jesus Christ Superstar,” where the question is “critically” asked about why Jesus did not appear in an age of mass communication. takes on a very different perspective, in terms of a rising Christ (Solar) Consciousness.

    For, if we take the time to look beyond the headline debate of the “fourth estate,” (the media) their is a science discipline rising, which is articulating a middle-path between psychiatry & psychology, that is bringing the practical reality of the Biblical Resurrection, into view. With its “insights” into organism function, and how our body, which includes our brain, creates our mind.

    An example of which is my own resolution in relative “isolation” experience, after three decades of using medical definitions to try to understand my behaviors, as the lived-experience of the symptoms of my schizophrenia and bipolar affective disorder diagnoses.

    Which came from broadening my personal knowledge base and changing my habitual attitude to all the subtle and not so subtle sensations within my body. Which essentially involves sensing voluntary/involuntary muscular tensions, and associated vascular pressures and spontaneous or withheld breathing. With a felt-sense awareness of the pressure/tension sensations of cerebral blood flow, in my various states of mind.

    A desire to understand the unconscious roots of my experiences, beyond a consensus normality, which has NO insight into the unconscious roots of its behavioural e-motivation.

    I urge members of this community to look beyond an “obvious” sense of reality, which history has always shown to be based on a self-protective ILLUSION. While I believe that the current science research on holistic organism function, which is beginning to highlight the heart, as the engine, or center of our systemic organism function, will see a shift in human perception, as significant as Galileo’s realization that the Sun is at the center of our Solar System.

    A self-realization that will bring us back to nature and see us finally understand the purpose of life. As the Universe evolved into a form which will save itself from entropy. An historic pressure for self-realization, in terms of normal self-protective ego-function which is painfully lacking a true self-awareness, still stuck in a simplistic survival mode of function. While urge readers to contemplate the real-time meaning of the current rise in stress related dysfunction, in terms of R.D. Laing’s intuitive understanding of our normal perception of what constitutes SANITY:

    “True sanity entails in one way or another the dissolution of the normal ego, that false self competently adjusted to our alienated social reality… and through this death a rebirth and the eventual re-establishment of a new kind of ego-functioning, the ego now being the servant of the divine, no longer its betrayer.” — R.D. Laing

    No other human experience dissolves the normal ego adaptation, like the experience of so-called mental illness. And practitioners of prescriptive medicine need, imo, to contemplate their behaviour in terms of a basic survival economy, which is emotionally sick and profoundly lacking in true self-awareness.

  10. Today I started my work day arguing, then crying, then talking and finally hugging. Not a traditional way in which someone might start their day at work. Not traditionally the way I start mine either, but today wasn’t typical, it wasn’t just another day. It was the day we had an open discussion about these proposed budget cuts, with the community members in our Springfield space. It was the day that we held some really heavy information together, and were frightened by the potential outcomes of that information. Not because we’ve never been faced with big emotions before, but because for the first time ever, those emotions were attached to information that is threatening our ability to sustain the life of our community.
    I listened to people ask questions like ‘Have we done something wrong?’ and ‘Why would they do this to us?’ I sat with people who cried and talked with people who were curious about ways to help. It was an intense day. There will be more.
    The Western Mass RLC is the only place I’ve ever worked, or even been to, where we can talk openly and honestly about our feelings and how we are effected by the things that are going on around us.
    Today was exactly why I do this work. Not because of some certification (that I don’t have), and not because I think that in some way I can ‘fix’ other people…I do this work, here at the Western Mass RLC, because I get to be real. I get to sit with people in their sorrow and their fear and support them to move through it. I also get to stand up for what is right and know with confidence that I am not alone and that I am always supported. In this moment, when faced with yet another form of oppression, I get to stand in solidarity with my fellow revolutionaries and refuse to give up this fight.

    That is what we do at the Western Mass Recovery Learning Community. We do not give up and we do not encourage others to give up, or to comply, or to follow anything or anyone without an informed desire to do so. We are a community, not a place or a set of rules. We support one an other, even if that sometimes means sitting with uncomfortable feelings, or crying, or hugging…or being human.
    ~Erin

  11. This is unbelievable. Our need to be cared for by other people gets ruthlessly pathologized as “childish”, “parasitic”, and “vampire-like”. With lots of hard work and luck, we eventually shed the people who espouse those stigmatizing misjudgments of our limitations by relying on fellow Mad folk for support. Now that the enormous and highly unanticipated success of peer support has gotten too obvious to ignore or belittle, the “system” wants to shut it down. Why? Officially, it’s all about the “benjamins”. But the real reason is that abusive families, militarized law enforcement agencies, and the economic and political upper crust won’t willingly part with any of the power they currently possess.

  12. I’m a new member of the western Mass RLC. Very new. But I recently used just that word “radical” to describe my experience thus far — meaning far different and the roots of a revolutionary alternative to the institutionalized mental health system. The response of one community member was to say, “what’s radical? we’re just about creating connection between people, creating community”. But it seems to me that any great movement for equality and human rights has at its core a commitment to connection. That connection is ultimately the most healing, for me anyway.

    I write this to say that the RLC is a valuable resource, particularly the way “peer” folks go into inpatient settings and spread the word about alternatives, supporting others to find their voice and be proactive in their recovery. In a place of powerlessness (and I can’t think of any place where I’ve felt more powerless), a hand is respectfully extended. I imagine this is where services might be cut because it’s probably a pretty expensive enterprise. Also, the peer respite concept takes resources — this is truly beautiful. I haven’t been to peer respite but I want to support the continuation and expansion of beds. I hope we can come up with a way to keep the RLC’s ability to continue this practice.

    So, I’m wondering about solutions? It seems like direct action is called for and community organizing to this end. People may have mixed feelings about peer supports (as evidenced by this site’s comments) but I think we can agree that we need alternatives to the current MH system and the RLC presents a viable alternative. An important step towards rebuilding and human rights. A different model that we desperately need.

    Leah Esrick, RN

  13. Before I stepped foot in the Western Mass RLC, I felt really lost. I had recently spent some time in the psych system again, and was back to questioning being in this world again in spite of all the treatment. I could tell from my experience that the mental health system was f*d up, but didn’t know how deep and how far it went. I didn’t know there was people who questioned or rejected mental health diagnosis or taking medications. What I did know was I sure as hell not going back to a hospital and was tired of trying to fight on my own.

    I’m not trying to profess the RLC or peer-support of some kind of miracle “cure” (do we really need “cured” anyways?), but I will say it was incredible to be in a space and part of a community where all parts of my life story are speak able and I question the things I’d been told all my life by clinicians.
    For instance, I’d been told when I was 14 I had a gene for eating disorders and depression. I concluded that it would be unethical to have children, a sort of internalized eugenics. While I am not aiming to start popping children out anytime soon, my “flawed” genes aren’t going to be the reason now. There’s been countless revelations through my stay at Afiya and work there and the centers. Even something as simple as knowing someone knows what it’s like or isn’t going to judge you or the thoughts in your head is huge. There aren’t enough spaces and communities like this. We can’t afford to lose any of the ones we’ve got.

    Contrary to being part of the system, I experienced the Western Mass RLC as a radical alternative. Radical might not look like people writing letters and protesting every day, though there’s plenty of that. It’s also making a space for people with all kinds of experience, including those who are more involved with traditional mental health services and might not want to revolt against them for a variety of reasons. It also means space for people who may identify more with homelessness or incarceration instead of a diagnosis. It means for making a space for individual people’s story and battling the system. Yes, peer support can be co-opted, like any good idea, but the solution is not watch as it is shut down, but work to take it back from being treatment plan enforcers and medication administrators.

    I was shocked and saddened when I heard we were on the chopping block. While no one is perfect, I think the RLC’s do make a difference for individuals and the larger system. Unfortunately the facts of life are we have to get funding to survive. I’m going to go write some legislators, I urge you to do the same.

  14. I have a substantial history with the world of mental health. I was first diagnosed in my teens and given my first psychiatric medication. Both my diagnoses and meds were tweaked and multiplied in the 20+ years that followed. I was hospitalized, sometimes against my will. I was removed from my home by police…for “my own good.” I was told I had an SMI, that it was serious and persistent, that I should come to accept the added weight I was carrying, find a hobby, try ECT (like it was a dessert choice) and mix and match my meds until none of it made any sense and I just couldn’t care anymore.

    When I became aware of the RLC, I was just starting to move away from my previous identity, that of professional psych patient. I was reducing the prescriptions I was taking, getting more physically fit and was starting to feel like I could contribute again. I had relocated and was living on disability. I had come to a turning point where my only options felt like suicide or changing everything. I was looking for work, part time, not too taxing. I was fragile and didn’t feel like I should represent myself as someone particularly dependable. “Part time should work out okay.” I had been taught to under-value myself by a system I felt entirely unvalued by.

    When I came across an RLC job posting for a part time community development position, I felt a spark of who I had been before the years I had lost to my diagnoses. As I read on, I was intrigued that the employer actually wanted someone who identified with the mental health path that I had been on. The ad was respectful and sincere.

    Now, I have a substantial history with the world of peer support. I couldn’t have imagined the adventure that I was embarking on when I began working for the Western Mass Recovery Learning Community back in 2007. That timid person who identified so completely with her diagnoses and her limitations wouldn’t recognize who she has become. She works full-time, now. She’s no longer on disability. She’s become well versed in offering trauma sensitive support to people very much like herself (and, more importantly, very much not like herself.) She meets people where they’re at offering unqualified empathy and assurance that they are strong, competent, exceptional people. She understands for herself that much of her life’s difficulties can be attributed to trauma and her unique personhood, not to supposed and scientifically unproven “mental illness” diagnoses. She is not broken and never has been.

    She’s designed and implemented trauma sensitive environments, like Afiya. She’s come out as the voice hearer she’s always been and become a stalwart advocate for the Hearing Voices Movement in the US. She confidently offers her voice to the growing chorus of activists speaking out to change a dehumanizing ‘mental health’ system that often swallows both those that work within it and those that seek its help. The woman, once considered by those that cared for her as “a walking catatonic”, has traveled nationally and globally speaking to issues of human rights and training others to offer Hearing Voices groups in their communities. She supports efforts like Hearing Voices and Alternatives to Suicide through curriculum development, outreach, facilitation and training. She counts among her friends activists and people who know their own power both around the world and in her own backyard.

    My life since the RLC came into it, a timeline:
    In 2007, I started employment with the RLC as County Coordinator, Part time
    In 2008, I helped establish the RLC’s first Pittsfield-based center
    In 2009, I met a man that would become my fiancé when he walked into the RLC’s Pittsfield Center
    In 2010, I became a first-time home owner
    In 2010, I developed a curriculum with support from Jacqui Dillon of the UK and started training others as Hearing Voices Group facilitators in the US
    In 2011, I moved to full-time employment with the RLC and closed my disability claim
    In 2012, I became engaged
    In 2012, I was a part of the creation of Afiya, Massachusetts’ first peer respite
    In 2013, I developed a curriculum around the amazing Alternatives to Suicide groups which have been birthed and grown through the efforts of my community
    In 2014, I traveled to Greece to present at the 6th World Hearing Voices Congress
    In October 2015, I will marry a man I may never have met if it were not for the community we hold so dear. Our community, our friends will witness our union.

    I offer this testimony and timeline as a qualitative glimpse at what my life has been since the RLC has existed. While I have very actively supported the RLC, both as an employee and community member, my community has supported me in so many tangible and intangible ways that I become choked up trying to enumerate them. With a 50% budget cut looming, I suspect legislators would prefer some quantitative analysis of my existence as it might be easier to wrap their heads around. The work they have chosen to undertake is certainly daunting. I would prefer, however, that they read these words; that they see the value in not reducing my life to numbers; and that they reconsider cutting a budget line that will effectively shut down opportunity for similar and unique stories for others. I would also like to thank the state of Massachusetts for supporting this incredible work for so many years and to especially thank the many people who have been a part of my making a life for myself that I find truly breathtaking. In the coming months, you will find me with my community, speaking to our representatives and advocating on behalf of those who value peer support. Please join us with the power of your unique voice. Thank you.

  15. Dear uprising,

    You write: You have a lot of interesting ideas to share, but unsolicited psychoanalysis is rude and it feels oppressive to read.

    Do you really believe that in world where toddlers are dying from the insanity of our current bio-medical sense-of-self. We should be too concerned about bruising a few ego’s and appearing to rude?

    This perception and call for civil discourse, is what keeps this webzine stuck with nothing more than endless, middle-class intellectual masturbation, imho. And the global mental health debate is stuck in a Cartesian circle of well-meaning rationalizations, because we refuse to address the nature of being human.

    In terms of your well-intentioned comment on my behaviour, you may wish to contemplate how, the road to hell is paved with…….

    Best wishes,

    David Bates.

  16. I sent an email to senators and representatives.

    As your constituent, I am writing you from ______, Massachusetts. I am part of an RCC). As you all know, a 1.7 million cut to the Recovery Learning Communities’ budget has been proposed by Governor Baker for Fiscal Year 2016. This cut to the Adult Community Mental Health Services line item would slash funding for the state’s six Recovery Learning Communities by 50%. These news have amazed, as well as, concerned me a lot.

    I knew a woman who since she was in middle school, dreamed of attending college and be a professional. She came from a humble community and a minority. When she graduated from high school, she saw the opportunity to yeah her goal. She pursued and graduated with an A.A., B.S., M.S _______ University, and Started pursuing A Ph.D while working as a General Manager. A woman who reached the first 14 years or her goals… a lot more to do…she thought.

    What she did not know was that she was ill for years, but the illness did not showed up much until very difficult situations crumbled her life. The career woman who was so independent, dynamic, social, problem solving and courageous was not there anymore. She was diagnosed with different mental conditions that affected her to continue with everything she was accomplishing. No more work, no more studying and a lot of isolation. That woman is me.

    After 7 years of therapy, hospitalizations and self-commitment, I met a person from an RCC one and a half year ago. I never heard from it, never received so much information regarding resources and assistance. I couldn’t believed that a program like this, “Peers’ based group ” was there for me and many others. At first I was scared to be among people, but I went one day. When I opened the door, I was welcomed as if I was known for ever by these strangers. That day was the beginning of a new goal, “at least get out of my isolation for some hours; meet others who can empathize; to be in a place where I can learned and be trained to be a facilitator and assist others.

    Thanks to the RCC, its peers and my commitment to it: I have not been hospitalized or gone to an emergency room due to anxieties or depression: I have started working on my hobby in photography; I have learned and teach about the community; I have laugh aloud again.

    I am proudly part of a very smart, strong, vibrant, and energetic group.

    The RCC is the only place everybody in need can be part of a group to learn, teach and share without waiting lists, medical insurance or eligibility processes.

    I am an example of a person who was a career woman who might won’t be able to work as before, but, still educated, smart and eager to learn and teach what I know. Thanks to the RCC, I can work some hours even as a volunteer and some per diem that helps a lot. Thanks to the RCC, I do not feel so alone, I am useful, I am empowered.

    Any cut to this program will hurt so many lives, opportunities for recovery, and the opportunity to develop a HEALTHY COMMUNITY.

    Remember that nobody is exempt of getting ill…nobody!

    Thank you for your time and consideration,

    Sincerely,

    Anncia

  17. I’m in total agreement, Alex. Money can only do so much. It’s the people that matter. A person with good intentions won’t overcharge. Back in Massachusetts I was dismayed to see our local schoolchildren insisting that the schools needed more funds. It shocked me because I never saw so many unhappy kids in my life! I watched them walk to school, their faces sad or angry, bogged down with heavy backpacks. None of this made sense since the schools weren’t going to make good use of the money if they received it. People make an organization. The best of them run on low budgets but have dedicated people and a large core of devoted volunteers who believe in the cause. If the cause is skewed or in violation of human rights, the personnel won’t be dedicated no matter how much money they get.

    Of course, I’d love to see the day treatment centers losing funding and closing down. If nothing else, these are the programs that coerce a person into lifelong dependency. In my opinion, this is a heinous crime. I recall how my family watched in horror to see their fiercely independent daughter end up in the dependency trap. It was certainly all unnecessary and I wish I never went that route. I am back to my independent self now, the way I was meant to be all along. It’s sad that all that nonsense took three decades out of my life.

  18. Working for the Western Mass RLC has literally changed my life. I used to just work whatever job I could find, and I worked doing a lot of different things. I never held a job for more than two years, as I was never passionate about them; they never spoke to me, nor who I really am. It was just about earning a paycheck, and as a result, I’d eventually become disillusioned and bored with my previous jobs. Obviously I was deeply unhappy and took medications just to get through the day to day of such a dreary existence.

    Eventually, I got sick of that. I couldn’t do it anymore. I spent nearly a year working odd jobs for money. I spent the rest of my time in meditation, really trying to figure out who I am and what I really wanted to be. I stopped all of my medications, and gradually I was able to think much clearer. It wasn’t easy, and I almost went back to taking another crappy, easy job just for the steady paycheck. Fortunately, I did not get the job, and the same week I read an advertisement posted by the Western Mass RLC, for the new peer respite that they were opening. My first thought upon reading the add was, “This needs to exist, the world needs this. There were so many times that I could have used this.” This was the first time in my life that a job had ever spoken to me, it was like something deep inside of me started moving, and came alive for the first time. I wrote a cover letter talking about this experience along with my resume. This was the first time I was ever truly honest about how I felt, because I was honest with myself about it, rather than dismissing it as irrational and “nutty.”

    A few months later I worked the first day that Afiya opened, and although it took me some time to grow comfortable in my role here, from that first day I felt like this was what I was always supposed to do. At first I was a bit quiet, and thoughtful about what I shared and how much of myself I showed to my co-workers and the greater community. I’m a weird dude. I have weird tastes and preferences, and although I could relate to people superficially around those common interests, all my life I’d felt like an outsider.

    Though my work was wonderful, and the feelings derived from doing something so radical and making such an impact on the world were enormously gratifying, it’s really my interactions with the greater RLC community that’s allowed me for the first time in my life to feel truly accepted. I no longer feel like an outsider, because I literally have a community all around me at all times. I’ve learned to trust others, to ask them for support when I need it, and to most importantly trust myself. My experiences with the Western Mass RLC have enhanced my personal relationships with my family and friends, and pretty much dispelled all of my social anxieties. I’m still an introvert, though over the past three years, I’ve just felt more and more that I can naturally relate to any person socially.

    Cutting funding to this community will be a terrible blow in many ways. It will limit the opportunities for people to have experiences like the personal ones that I’m relating above. It will limit peoples’ abilities to form connections and access support at the RLC Centers. It will restrict the amount of outreach we can do within the more traditional systems, and how much we can travel to present on our model and to speak our truths.

    It’s definitely not about the money. There are countless people who tell me, sometimes every day, “The supports from the Recovery Learning Community keeps me out of jail, going to the RLC Centers keeps me out of the hospital, I don’t go to the traditional respites anymore because I go to Afiya.” All of those are significantly more expensive overall to the state budget. For example, a stay in the behavioral health section of a hospital costs around $3,000 a day. Think about how many people on State insurance go to the hospital, and how many days they end up staying there. A program like Afiya focuses specifically on hospital diversion. The RLC saves money the government money; that’s the bottom line. If every person who stayed at Afiya went to the hospital for seven days instead, the cost would be roughly 4.2 million. That’s a fraction of the budget here. Granted, not everyone who goes to the hospital is on state insurance, though even if only a small percentage are, it’s still saving money. Factor in the supports from the greater RLC community, the Resource Centers, Hearing Voices Network, and Alternatives to Suicide, and we’re helping a lot of people move through their experiences without seeking significantly more costly options.

    Those are the facts, peer supports are truly under assault, and it’s time for not just the RLC community, but all the movements within our country seeking to offer valid alternatives to the traditional model, to band together and institute real radical changes. We need to prove to these people that we’re not just some disposable line item on their inflated budgets, that we are real people with real lives and real stories, and that we are supporting real people in THEIR communities. When they cut this funding, they are hurting their family, friends, neighbors and co-workers, as they’re taking away a very viable option that has countless success stories to support its importance in the world….

    – Andy Beresky

  19. I’m responding to Tina M’s comment at 12:40 waaaay above (so frustrating to have a ‘discussion’ with this current set up with the inability to reply to the intended post)…

    ” There is a persistent strain within capitalism itself of people rejecting the ordinary ways to make money, but often as it seems to be in Alex’s narrative it becomes a personal bootstraps story, if I can do it so can you. This is a narrative entirely within the capitalist/individualist framework. ”

    THIS^^^^

    Some of us have many more resources (money, family, community, friends, housing, etc etc) than others. What I read on here in the comments section many times I find to be discouraging and shaming rather than ‘meeting’ me where I’m at.

    I don’t have money to hire a lawyer to make sure I get re-trained according to my rights as a person deemed ‘disabled’…bully for you, but tired tired tired of the bootstraps shaming crap.

    “If I can do it…” Please stop.

    • Tina put words in my mouth. I never at all said or even implied ‘if I can do it…yadayada.’ I was clear and open in my response about this. All that you are responding to here is illusory.

      I didn’t have money for anything, I was resourceful, that’s the point. Where on earth did you get the idea I had advantages?

      What is the deal with communication around here? It’s abysmal! People are making things up.

  20. I can only speak from personal experience about the difference the Recovery Learning Community has made in my life. During one of the most difficult times I’ve experienced, I discovered the RLC while looking for community supports. While I struggled with overwhelming depression and panic, I waited the weeks it would take for traditional mental health support.

    In contrast, I was able to instantly connect with the RLC, no questions asked. It was a place where I could openly share my struggles, and where no one was scared off by my words or my symptoms. What I received in return was acceptance.

    Now I am in a better place and able to welcome and support others who come into the space. The ability to fill that role in a community that gave so much to me furthered my recovery in a way that no medication or mental health treatment ever could. The thought that our community could be devastated by a 50 % cut that would only save .5 % in a budget is both heartbreaking and terrifying. It inspires me to see so many of us come forward to prevent that from happening.

  21. i, too, am offended by accusations of having a bootstrap mentality. I used to be so angry and I’d even get pissed if I saw others succeeding (usually, yes, it was because they had plenty of money and “loving family.” I had neither. I was also accused of being a “pollyanna” today. You can’t please everyone. For two years I was the most negative person on the planet. A lot of people complained and told me, “Why can’t you have a better attitude?” So the past few months I’m finally getting it together after over three decades stuck in the MH system and this, too, displeases people? I’m not here to keep others satisfied. I survived because I did something extremely radical to save my own life. I mean this literally. It wouldn’t have been suicide that killed me, but neglect, hatred, bigotry, profiling, bullying, and scapegoating. Had I done nothing and instead, waited around hoping for the world to change its ways, that would never have happened. I did what I did because I absolutely had to. To survive. I guess that’s why I don’t have much sympathy for folks who on one hand, seem to be stuck in misery, and on the other hand, they are complaining about it and doing nothing. Maybe a person has to have a bunch of years on them before it all comes crashing to a huge ultimatum: Do something radical, or die. We are all doing our best. I, too, am tired of the accusations. Can’t I just be me? The radical change I speak of is contained in the article of mine just posted here on MIA, if you really want to know.

    • Thanks for this, Julie. Indeed, we live for ourselves, not for others, and yes, others will have their opinions, projections, judgments, and misconceptions, and insist on them no matter what. I see this as a blatant and kind of bizarre resistance to light, and a troubling dependence on illusions. Especially in the mh world, I have found this to be unfortunately true, which is a tragic irony. Ascending and seeing past these illusions, of course, is how we find our clarity, health, and well-being, as you well know. Thanks always for your example and inspiration!

  22. I am incredibly grateful for the Western Mass RLC. Despite years of “treatment” and a huge desire to improve my life or die I was not making progress towards creating a life that I wanted to live. When I finally learned of the WMRLC it was like a whole new world of possibility opened to me. I had done the best with what I knew and soon I knew better and did better. The opportunity to hear so many different perspectives and to be able to actually have those difficult conversations without being medicated or shipped off was and is incredibly helpful and healing. In the scheme of things, regarding the expense and effectiveness (or lack there of) of the Mental Health system, why cut such a small and powerful resource. Perhaps it is because we make waves that ripple across the country and beyond, perhaps it is because we do not have slick marketing and do not profess to have all the answers, or perhaps it is because the politicians just do not know any better.

  23. I’m reminded of an article I cut out of the new york times years ago that had a clear statement by Newt Gingrich the main out front republican spokesman of the day. He actually said to paraphrase , that the baby (social services ) could be drowned in the bathwater, not through discussion or debate but by simply making sure they (social services) were defunded and the people given an announcement that there were no funds available and that the people would have no choice but to accept it. At the the same taxing the wealthy was and is taboo.

    • Social services used to be a noble and compassionate sector of our society, intended to help people who needed temporary support while dealing with undermining life issues. These days, it’s become a ring of corruption and incompetence, more like a vampire to society–not helping, but continuing to limit people with a perpetual ‘less than’ stigmatizing attitude, regardless of anything. It’s inherent and prevalent in mental health social services.

      Certainly not all individual agencies operate without integrity and perhaps are effective in helping people get back on their feet in a better way, with new wisdom, strength, and personal power. However, they would seem to be in the grave minority, and are still part of a tainted system, so I think it would be practically impossible to single out one or a few programs within such a vast ocean that is ‘the social service system,’ especially specialized in mental health support, healing, and recovery.

      Again, what I feel is inevitable is that this system will fall like a house of cards, and more likely sooner than later, with the way things are going in the world now. It’s good to know how to build forward when old systems finally fade. That’s what is happening now. New ways are on the horizon, which can still be hard to imagine, but new stuff always springs forth as the old systems fade and die out.

      Just last week I read about a shakeup in the public mental health industry and social services in the county where I live in N. Cal. Psychiatrists walking off the job, complaints to the county supervisor board, from staff, about terrible working conditions, etc. I know a public health care professional up here who says they do everything they can to circumvent mental health social services up here because the people who run it are so mean. Honestly, that’s what she said, no one can work with them.

      It’s really over the top, I can’t believe how bad it has gotten, on a human relationships level! That’s pretty scary, considering that the nature of trauma is more often than not, about abuse and family relationships.

  24. Sera,
    I just called Gov. Charlie Baker’s office in Boston (617 725 4005) and spoke to someone named Nick. I told him of the predicament WMRLC finds itself in, their funds having been cut in half and of the good work peers are doing there helping people and how this cut curtails help that is needed ,and that this work saves the state money . He was very receptive and said he would put this together for the governor’s desk. It couldn’t hurt if the governor’s office received more positive calls about WMRLC. In solidarity, Fred

  25. I have been reading this exchange with interest. I was not going to chime in but now feel it’s time.

    Alex has some points, but for an entrenched system to change would take far longer than the RLC has and would depend on eliminating most stigma in the general public. I fear if those who provide mental health services had to forage for money it would not end up being the utopia that Alex envisions.

    My first training in Mental health, other than my forced hospitalization, was at the RLC and it was on advocacy and it ignited a fire that still burns today.

    There has been times over the years that I have worked with and for the WMRLC and I have never regretted one second of that time I invested.

    However, I have always had what I call a sibling relationship with them. By that I mean we can argue and fight over an issue or concept but in the end we are related and connected in the common cause of self-determination and freedom from oppression of any and all kinds.

    I have always been a maverick and more than willing to share my ideas and outlooks 😉 this has led to many spirted conversations between Sera and myself and a few really good ones with Ms. Forestall 😉 Mostly around language and Peer roles. We were even on a panel debating all of that last year at the DMH.

    So, having said all of that let me say this:

    I cannot imagine or envision, nor would I want to, a world without the WMRLC. I would miss my sparing partners, they keep me thinking and always evaluating.

    Far more importantly, we would lose the one and only place here in WM that provides the most important medicine that all of us need. A place to come where no one judges and folks are willing to simply sit, hold your hands and be a quite presence that says profoundly “I am here”

    That ability is one of the most challenging to master but once you do it creates truly symbiotic relationships, the most powerful, intimate, wondrous and magical of all relationships.

    I love you folks, keep fighting, I will calling and writing everyone I can think of.
    Mike