Hey Angie, Ellen here. Great article! I’m so glad to see you and your expertise here. Yes, we’ve learned a lot doing it ourselves. Now, if we can crack the Big Pharma wall between lived experience and practitioners, maybe we can get some compassionate support in the process.
Thank you for this. I have recently tried within a group of fairly well-enlightened people who are attempting to change the “mental health” system that even transpersonally-focused therapists are loathe to give up these concepts. Worse, I think, is condescension seems to be part of the curriculum, no matter what the spin on “treatment” and that becomes the underlying edge to communications.
I would add one more utterance that should be unacceptable. “You’ll have to take these the rest of your life”. I might not have fallen for that one had my mother not committed suicide because the psychiatrist added, “or you’ll wind up in your mother’s condition and nothing will help.” Then he went on to describe the “kindling effect”.
I was a person who got drug after drug added to the protocol, increased dosages and for 13 years, I struggled to care for myself under the influence of so many drugs. After 10 years of increasing anxiety, panic attacks, the addition of a trained service dog to help me in public and a whole host of noxious drugs including Klonopin, the psychiatrist saying, “Well, maybe if we took you off the Welbutrin, you wouldn’t have so much anxiety” gave me the hint. OMG, he is treating side effects of the drugs by prescribing more drugs! This is the get a bigger hammer approach and I had had enough battering.
I’m celebrating four months psych drug free now. The combination of drug neurotoxicity (withdrawal syndrome) and the processing of deep grief and working through the trauma that got buried under the drug blanket is a 24/7 task. I’m grateful for MIA and my friends with lived experience for sneaking me in the key to my own personal cage so I could free myself.
Unfortunately, the video has been removed from youtube because of a copyright infringement claim. If it is viewable any place else, please let us know.
James, I disagree with your again creating a parallel with “stigmatizing” medical conditions for several reasons:
1) You are mentioning illnesses that despite the social judgments applied to them, all have a biologically determinable cause or origin;
2) NONE of those illnesses or “labels” calls into question whether the person labeled as such is competent to function on their own behalf;
3) Once a “mental illness” label/diagnosis is applied, causes for the suffering are less likely to be sought and addressed because drug management becomes the focus; and
4) Anyone so labeled is easily dismissed, incarcerated, infantilized, discounted and otherwise treated as a not fully formed adult human being with civil rights.
Wow, Steve, well said. You covered all the bases in any comment I would have made about this. Thank you.
Well put, MCC. No way I’m getting out of this lifetime without the dark cloud of those labels (I used to call it “dart board diagnosis”) hanging in my wake. They have never been useful (to me) and have only served to make me feel totally screwed up. Now that I’m finding my way out of the psych drug tar pit and starting to realize food and chemical sensitivities (plus childhood trauma) and some other unique individual qualities are underneath all this, I’m pissed, too. I’m all for the label users placing their labels where the sun doesn’t shine.
Great article, Sarah. As I read it, a couple of things occurred to me. One is, I’m finding co-conspirators in the madness revolution doing exactly what you are talking about, not perfectly and not without our own limitations. Nonetheless, the depth of humanity and authenticity I’m experiencing among others who are willing to question and rebel are the healing energies I’m mustering for myself.
My other thought was the longing for humanity and the paucity of that in our culture may be at the heart of what many of us experience when we are bereft of hope. It may be the underlying cause of my own madness. The “illness” is the cultural malaise that spawned a 50 minute hour healing construct. As I wrapped up my last therapeutic relationship that didn’t work (I have one that does now), I mentioned that I would be immediately locked up for being a danger to myself or others, but the mom texting and driving on the freeway with her baby in the car next to me and the psychiatrist handing me yet another Rx for yet another drug are free to endanger me at will.
Well said Alex. For me, that healing road is neither a highway nor the scenic route, sometimes it’s not even a path. Thankfully, others are on their own healing roads and when I toss up a flare, some see it and extend their humanity.
Hooray for your efforts at getting this going Janet. I believe the Sunrise Center will be of great value to many. I’m familiar with RC because I’ve had several friends who’ve used it. Given that it allows a person to express emotions with safety and support, it could be quite valuable.
As someone who is currently in the process of withdrawal, right now recovering from an extreme state I experienced as part of that withdrawal, I think a broader base of supports is necessary. I believe people who have gone through this process after taking the drugs for a long period of time, especially those of us who are older, need multi-disciplinary supports. Nutrition has been a big issue, as is the ability to regulate my daily life and self care given the withdrawal effects. Is there more to the Sunrise Center than RC?
Agreed. The physical part and managing the withdrawals is major. From what I’ve understand, we each go through it differently. I’ve had wonderful peer support, professional and medical support, but no one resource or technique has the whole answer.
Dreamflyer44, here’s what’s dangerous, drugging people to the point where we don’t know what’s true any more, then telling us we have to take drugs the rest of our lives to find peace. My heart goes out to you for having to watch your daughter suffer. My heart goes out to her for being managed in such a way that even if she were to express the thought that she wants to get off those drugs, or maybe take fewer of them, she would be reminded how “ill” she is without them. She is a captive of something with such dire long-term effects, it’s tragic.
On the other hand, if she chooses, on her own, based upon her own adult authority (and with adequate information about the drugs she’s taking and their long-term effects) to follow that protocol, I support her. It’s all about choice, dignity and being recognized, not as someone’s daughter or as “seriously mentally ill”, but as someone who has the basic human right to choose how to live.
Coming off psych drugs is no picnic. I’m going through it. I’m having to deal with the very emotional baggage and trauma that has been masked by those drugs for many years. Thank goodness Janet and her team are taking this on. Those of us who are going through it need this resource because the “mental health” system seems only willing to fund “treatment” that creates dependent, drugged, individuals, infantilized by both system and family members into believing our brains are broken.
Thanks for your reply Dani. Yes, moving through crises without numbing is my goal.
I imagine it will be difficult for any respite that is not peer run (from board level all the way through) to maintain anything like what Afiya has done. The respite here will be a house, separate from a clinical space, but how people get there, the process by which they arrive will be very different. Initially conceived as an alternative to entering “the system”, the contract requires it to serve people already in “the system”. Ironic. Thanks again for the great blog and for the work you’re doing.
My sentiments, too, Fred. Love the term psychpharmagulag. My first stint was in 1974. I wonder what my life would have been like…
Wow, the video really spoke to me. Having just gone through what Marty described, and barely avoiding psych lock up, I can only hope this message will get through. Fortunately, I have a community of loving peers from having worked with them and they were willing to see me through my extreme state by staying with me at home. After 6 previous hospitalizations, I have to say, this was the FIRST time I was able to go all the way through something I think my spirit and soul needed without being drugged out of it and experiencing the awful trauma of lock up.
There’s a “peer run respite” to be opening in this community soon. However, it will be run by a contractor (clinical/medical model) through the County Mental Health department and only serving people who are in the public mental health system. I doubt it will have any similarity to Afiya other than it will be in a house and the people working there will be identified as “peers”. It’s sad, because the vision for this place came from the Soteria model, but the money came through the government. I imagine “compliance” on drug protocols will be one of the first orders of business.
Thanks for the video that makes the differences between clinic and peer respite so clear.
Including mine.
This is not entirely true. Proposition 63 made a huge difference in my community, providing an alternative that, while still linked to and overseen by the traditional mental health system, had done some wonderful innovations and made a huge difference in many people’s lives.
I worked in a program that was tasked with “proving” its effectiveness in using the Prop 63 funds. Unfortunately, that is being defined in terms that are virtually impossible to track and quantify, because of a combination of HIPAA and a lack of imagination among the mental health professionals who grant the funds. My job was directly in this role. The measures of effectiveness were not defined in human terms primarily because those of us who were running the program (peers) were excluded from the evaluation design. All suggestions I made to include qualitative measures were whisked off. I worked for a peer-run organization at the time.
I’m concerned about this article being off in that I experienced something different than it implies. While the money comes through the traditional mental health system, some agencies (like ours) are doing some wonderful work with it. Unfortunately, evaluation is based on an illness rather than a wellness model.
I have followed most of this discussion although I check out when ideologies get heavily debated. Here’s what I see.
In extreme states, academic pursuits and paradigms we use to explain our experiences to ourselves our primary reference is our own personal mythology. My experiences, memories and constructs are the stuff of my distress and my wellness. Everything from my DNA and family lineage to trauma to school experiences, interests and things I don’t even remember that I remember, but mostly my beliefs and ideas about those things form my personal mythology. My senses are constantly gathering, bombarded really because I’m someone who “feels” energy. Sudden flashes of brilliance have come through over the years, illuminating clusters of what is stored in that bank of books I’ve read, illnesses I’ve had, allergies, sensations and ancestral lore. The flash of brilliance shines on truth and lie at the same time. Boom!
Connections are made where they didn’t exist before. Things tumble out like brain salad and observers see “crisis” “suffering” “panic” and an urgency to set it all straight. Each observer sees what I’m experiencing through THEIR mythologies, not mine. We do not have the same ones. No one does. We can be helpful to each other by describing our mythologies and constructs. We may have had flashes of insight that fall into the truth category in that vast library of memory. That truth may resonate with someone else’s personal mythology but they are never exactly the same.
This is why I am hesitant to accept anyone’s direct guidance in healing. I need to uncover my own mythology, unravel it to extract the untruths.
True dialog and learning occurs when we look at our own mythologies, follow the breadcrumbs we have already dropped for ourselves. Castaneda, the Bible, psychiatry, shamanism, transpersonal psychology: any individual piece could be the scary place we are healing ourselves from or it could be the place our breadcrumbs lead us to respite. It is unique and individual. In my paradigm “collapsing” the barriers goes to the individual who is experiencing the extreme state. That person is the ONLY one who can find the breadcrumbs.
Amnesia, I read your comments earlier…just so you know. This has been such an incredible discussion, I’ve not commented everywhere I was moved to.
YES, Alex! You are saying exactly what I’m thinking about this discussion and saying it very well. Thank you. It sounds like you and I have walked similar roads although I’m just now coming off the drugs and out of the stupor. I’m looking forward to my future with a clear head. I value and no longer fear the unique perception that lives underneath my experiences with madness. One thing that remains is the disenfranchisement. I won’t be able to return to the privilege I once enjoyed. My frame of reference changed. I’m grateful for MIA and for Natalie and the attempts many are making to address the void into which so many of us drop. I’m just not seeing the change happen within academia.
Alex, you’re singing the song I’m humming. 🙂
I also read Natalie’s reply. The challenge when academia take the stage is the energy becomes study focused outwardly. While people in every walk of life may have experienced trauma, stress, extreme states, etc., academic study is inherently privileged.
Studying my own experiences, then seeking the places where I see myself reflected has helped me embrace my personal mythology. That study has been self-directed. I would love to participate in dialogs about this, but I do not know how study by academics could suspend privilege in a way that would make any difference in scholastic circles.
Thank you for your reply, Natalie. If it is Both/And, I believe those of us who have had extreme experiences are really the ones who could become the educators. Perhaps that is more my point. It would be refreshing to be looked to for expertise with extreme experiences rather than being “studied”. Since there is no field of study that cuts across those disciplines, people like me develop our own understanding and could provide the perspectives that break open the boxes. I had missed your point that those doing the studies in the various disciplines are not looking at extreme experiences. Definitely lost opportunities for all of us. I appreciate your thoughtful, broad view.
What a great discussion to start. The call to coalesce appears to have a basic flaw. It focuses on academics, the need to study, examine and describe some phenomena according to a particular set of beliefs.
What if, as individuals having anomalous experiences, we own our own creation? What if my life experience and personal mythology, my quest for the holy grail of wellness. including my anomalous experiences, are unique? What if applying any paradigm actually prevents me from reconciling some aspect of my existential pain because while one piece may fit, several others are missing or appear to conflict? What if I need to be the studier, not the studied?
I think the bridge building starts with those of us who’ve had sufficient anomalous experiences to speak to our personal paradigm and how it fits/doesn’t fit with the previously observed in academia. It’s kind of like reversing who asks whom to dance. My healing came when I started finding others with similar experiences who can share their deeper stories. As I listen, I find many parallels, but am struck by the uniqueness of each person’s own mythology, unless they are tied into the medical model. That mythology is fairly consistent.
Corrine, thank you so much for your story. You reinforce my resolve as I am approaching nearing the end of a long withdrawal, many drugs. You mentioned working with mental health professionals in a a peer role. My work in a similar setting was my wake up call. I was treated as a nincompoop by a man who was at the same level in the county human services system as I had been in my previous career. He had no idea who he was talking to. I realized he was treating me that way ONLY because he knew I had a diagnosis. The behavior is inexcusable regardless of my history, but so starkly due to the diagnosis, it startled me into reality. His behavior and the almost identical behavior of my psychiatrist were affirmations of my decision to free myself from that oppression.
Your kids are fortunate to have a mom they can see took charge of her life (and theirs). You help the rest of us by your example.
Beautifully written Matt. Thank you.
I’m down by 4 (all the heaviest ones), working on #5, with one more to come off of after that. I feel SO much better than I’ve felt in decades. My natural self never caused me the extremes of anxiety, disorientation and distress as the drugs did. I don’t know what to expect as time goes on. I am coming out of the fog with a better sense of who I am and hoe my choices either increase or ease my suffering. I can assess the options and make those choices with a clearer head. What a difference.
Sa, thanks for pointing this out. I do qualify as the “crazy aunt”, but am becoming aware that label is both unkind and untrue. It’s also the reason why Elizabeth can say these things and be listened to. I can say these things and watch my loved ones faces grow concerned as they mull over my becoming “symptomatic”.
Thank goodness for those cracks in the facade Chris. I have my little chisel and hammer out and am working away at making them bigger.
Follow up comment. What about making your play available for production in community theaters around the country? I know a director in my area I would love to approach with the idea of producing it here.
Telling my story aria. Upped, added to, changed…looking for the right balance.
Elizabeth, you have done what people who go into this drug nightmare through a psych hospitalization can’t do. Anyone with a history like mine (hospitalized 6 times), has a helluva time standing up to friends, family and anyone else who “cares” to say, I’m going off these drugs. Once my head started to clear, I realized the last 13 years of my life was like your 18 months because of the drugs. In the meantime, their effects prevented me from doing the work necessary to deal with the grief, trauma and poor lifestyle choices that led up to each of the hospitalizations.
The answer is to keep talking about it. I’m surrounded by “peers” who are convinced their drugs are essential to their stability. As they believe it, so it’s true. If there is a way I could participate in a larger effort to address this, I want to know about it. I did post your talk on my FB page and urged people to watch it.
Another comment about people believing in us. YES! I started with 2. That number grew as I started to believe in myself. The rest of the people in my life believed in illness, doubted my judgment or at the very least said they wanted to “check in” with me more often. It has taken several months, but those who were benevolent skeptics are seeing the huge difference in my being present, calm, self-possessed and happy. Now I want to continue to be one of the 2 for someone else.
Thank you for your encouragement Lauren. I’m putting the Dialogues in my calendar.
Lauren, you’re telling my story, not in exact terms, but so similar. Schizophrenia was my first diagnosis of many. We have a friend in common, someone who is supporting me in claiming/reclaiming the person I was born to be. I too, am writing. I’m inspired by the work you have done. I’m emboldened by it even as my decision to fire my psychiatrist and work my way off the drugs has people who love me looking askance and examining me for signs of pathology. The more of us who are strong enough to break free and talk about this, the more will be able to.
Thank you SO much.
Ute, Depending upon how the peer support is put into place, there is the OPTION of building a culture within a culture. As a gay person, I know how that works. I EXPERIENCED it while working with peer support offered on a contract basis by a group of people who conduct their own activities within that environment, not working FOR the mental health system, working within it. The alternative paradigm is possible in that context.
I’m not even sure suggesting is the best idea. Asking what a person thinks they could do or want to do. People most often come up with the solutions based on their abilities, needs and where they are on their own paths. We may know what we would do. I believe in deep, reflective listening with an open heart trusting that the relationship founded on that basis helps people move forward. At the most, I would listen until the person has talked it out and ask if they have identified their options. See what they say. Then ask if they want a suggestion before offering one.
It’s about establishing a workplace culture in which the job and language associated with the work reflect those values. In my experience, people self-select in and out of work environments and like every other situation, the right match-ups seem to happen miraculously.
Yes. That’s what has helped me the most. Since I worked in a peer-run center, I was able to identify those who had dealt with coming off drugs and other issues. Through those affiliations (and MIA, etc) I have been able to educate myself. In that setting, there were also people steeped in the medical model and heavily drugged. The good thing about that was I was able to see the range of experiences and how beliefs affect well being.
Another note. This discussion sounds very either/or, black/white. It’s not. Lived experience creates and intangible energy that people transmit and feel based upon how a person brings themselves to the relationship. “Technique” is not a part of this equation. Genuine presence without ANY preset outcome (neither “helping” nor “mutual growth”) is probably the most powerful point of connection.
jm,
I appreciate your clarifying. My “friend” observation came from video on the website. Providing support requires self-awareness, doing our own work, but not in a conversation to help someone else. When I’m providing support, many things come up, but it’s not about me at that moment. I could be very uncomfortable with what someone is saying, but I need to make sure how I deal with that does not shut them down.
The peer counselors I know work in extreme situations with people in an ER, on mandatory holds. Sometimes those people are “shelved” at the ER until a psych bed can be found. The peer counselor can’t stop action and launch into what’s coming up for them, especially when their lived trauma is usually triggered by nurses, doctors and clinicians they are interacting with. They have to rely on their back-up support peer, available by phone, whose purpose is to help them process what happened (or is happening). These peer counselors don’t have as much difficulty listening, empathizing and being with another human being as they do in dealing with the professionals.
For peer support to be truly effective in a multi-disciplinary environment, particularly in the midst of crisis, a person has to be prepared NOT to process their reactions with someone other than a person designated for that support. That’s why I believe peer support in any environment needs at least one peer back-up. A single peer support person working in a multi-disciplinary environment is deadly.
@Winifred, the facilitators only manual was not available to me. The $35 one is like a workbook. It has great material in it. I’m not dissing the entire approach. It actually has more promise than the certified peer specialist trainings which, in my view are more indoctrinations. If you are looking into IPS, I recommend you buy the $35 manual. It has some great ideas and exercises. I agree with the general philosophy. I also believe there are other techniques to put it into practice and, in some cases, the listeners’ skills and ways of communicating are probably the key in making a true connection.
Ute,
There is no room to reply to your response, so I’ll say it here, hoping you will see it.
I know people who have completed IPS and people who are peer counselors and have gone through different (not peer specialist) training. The esoterics of IPS come through in your explanation. Those esoterics may become felt experience. With a good workshop leader, they can be felt. The skills, ability to self-reflect and even individual strengths of each listener vary so greatly, that putting those esoterics into practice IS the challenge.
I believe a philosophy that also translates to a listener’s practice of self-awareness, continually choosing to have an open heart, but most importantly to listen to the other person’s world as the speaker experiences it, not as the listener does. I think that’s the philosophy of IPS, but people who have not adequately processed their own stuff may (and in my experience do) have difficulty allowing someone else’s lived experience and perceptions to stand on their own.
Having worked in a peer-run peer center, I know if someone calls themselves a “friend”, the expectations of what a “friend” does get formed.
I read the manual you can buy for $35 on the website and watched the videos. I cringed when Sherry said, “As your friend…” and thought about the many, desperate people we serve, how difficult it would be to set boundaries when an expectation might be appropriate between friends, but not within a peer center.
I investigated IPS and think the mutuality model is wonderful, since it is mindful of power. With all I had heard about IPS, I bought and read the training manual. In my opinion, the major flaw is the possibility for a person who needs to be heard getting waylaid by the listener making it about them and their trauma, what’s “coming up” for them. In my experience, the truly effective peer counselors (we don’t call them “specialists” here) are those whose listening skills allow the individual needing support to explore while helping diffuse the current trauma. I did not like the IPS model having to listeners referring to themselves as “friends” because that sets up unrealistic expectations that can later create a sense of betrayal.
I think most peer specialist training presumes a medical model mini-me role, maintaining a power differential and subordination.
I worked for a peer-run organization. Sadly, funding sources over-shadow the true alternative possibilities. However, within the peer-run organization, there is an ability to examine our individual paradigms and beliefs. Starting a group about getting off drugs is not feasible with mental health funding, though. The other part is, “peer-run” could also mean the peers running it are completely bought into the medical model, themselves on heavy drugs, fearing EVER getting off them. The culture in that setting IS a drug culture. That fear can keep people stuck in identifying with their “illness” and “symptoms”. In a peer-run setting, the culture of belief can also undermine possibility.
Thanks Someone Else,
Fortunately, I’ve been off the neuroleptics for quite a while, now it’s just the anti-convulsants. I’m watching carefully and journaling to keep track. Super sensitivity has been at the root of what has been dubbed “mental illness” for me, so my strategy is to take care of that FIRST and make it a priority. I so appreciate your encouragement.
Stephen,
This was a 3 day workshop. As you might imagine, there is a lot of conceptual groundwork and nuance. I’m at a lost to explain it in this forum. I’m not sure it lends itself to “group work” if I understand what you mean.
In my direct experience with my own psychiatrist, even the suggestion that I might have done research and wanted to reduce and get off the drugs prompted a childish, resentful, oppositional reaction. I wished I had a stealth video camera, even if it was to record the conversation. I was shocked. He’s history.
Thanks Stephen. Do you have a link to that blog by Insel? I googled it and couldn’t find that particular one. I’m considering developing some curriculum for peer support introductory workshops. I am gathering references from other communities of practice to educate about the limitations of what is actually known about mental “illness” with articles from a variety of sources.
About examining our own “stuff”, I had great success facilitating a workshop that guided people through the process of looking at how they were viewed through a diagnostic eye, then have them write their own stories through the trauma model. They provided peer counseling to each other. This required no role play. It was real. The process was challenging, but allowed them to look at a big chunk of what the mental “health” industry superimposes and shift their thinking to step aside from that and make true connection. It also became very clear who didn’t want to look at their stuff and felt more comfortable in a power role.
Peers, operating under any philosophy, are under increasing demand because there are not enough clinicians to address the epidemic of “mental illness”. Having worked at a peer support center with people in crisis, homeless or otherwise marginalized, I saw these things:
1) Poverty and economic collapse created a surge in crises, flooding ERs and psych hospitals with people in despair;
2) “Treatment” usually in the form of diagnosis for bipolar disorder or depression came along with, on average, 2 psychiatric drugs and release back to the streets, usually in worse economic or housing conditions than when they went in;
3) Impoverished and needing continued medication and “monitoring” they wind up in the public mental health system, developing dystonia, dyskinesia, losing teeth, becoming sluggish and unable to function; and
4) Becoming totally, severely disabled, physically and mentally by the drugs and emotionally by the increased stigma and marginalization.
Yes, peers are needed, but at what point? The mental illness industry is cranking out “consumers” who may never get their lives back. Recovery, requires a peer model that serves people before the crisis. Therapy is unaffordable. How do people struggling with stress and economic pressures get support? People with health insurance have already gone to their doctors and are likely hooked on the drugs. Although their lifestyles may have created their depression and anxiety, they have become “consumers” without hitting the wall because they have resources “consumers” need.
People in poverty who need peer support the most are those who haven’t yet hit the wall and still have an opportunity to build community and resilience before their adulthood is taken away. The question is, who funds it?
Agreed, agreed. I fired my psychiatrist a month ago. It was the first time I felt I had reclaimed my adulthood in 13 years. Now that I’m talking about harm reduction and withdrawal from the drugs (gradual, conscious, cautious), “peers” (not all thank goodness) are showing fear. The fear perpetuated by the myth about having to take drugs for the rest of your life drives WAY too many peers in recovery.
I couldn’t have said it better. I’m currently in a long-term process of withdrawal from the drugs prescribed to treat “bipolar”, drugs that ultimately disabled me and made it nearly impossible for me to recover. Thirteen years later, I’m taking my life back, ALL because of peer support and sharing resources.
Sadly, the center for which we work will not and would not offer a support group for people who want to reduce or get off their medications because: 1) that’s counter what the funding sources want; 2) it scares NAMI; 3) we are not doctors and should not be giving advice on medications.
We do not have a place to meet. Thank goodness we found each other, funding or not.
I loved the blog. Jonah, I’ve had both experiences–having been held, forcibly drugged, subjected to a wide range of paternalistic, disempowering, debilitating treatments. I’ve had many labels and was finally told that “bipolar disorder” fit because the medication for it “worked”. I apologize for all the quotation marks.
Fortunately, I’ve also had a wonderful therapist since 1988. Although she doesn’t experience them, she does not make my paranormal experiences “crazy”. While she is trained in the traditional medical model, she has taken interest in my life path and often marveled at how well the pavement comes up to meet me.
It is truly remarkable for someone who has been thrown in the slammer (how it feels to me) 6 times to pull out of the vortex. I’m in the process of that and appreciate those who accept all the different ways we find ourselves not-ill.
That was my thought. In reading what she wrote, I wondered where she could talk about those unresolved experiences, obviously still distressing her.
It must be extremely difficult to be in the public eye, sliced and diced by media (and others) while trying to sort through experiences that involve psychotropics. A diagnosis and human test tube experiments are hard enough for someone who can deal with it privately.
Although I appreciate what I have found here at MIA, all or nothing doesn’t work for me. I have had wonderful (not drugged) support over many years to help navigate life as I perceive it. It came from the mental health profession. In fact, in the 70s, my psychiatrist helped me find the tools among my personal resources to ride the waves. When I took drugs, it was temporary. Actually, I chose a lot more recreational drugs than I have ever been expected to take.
My therapist has gone where I go without challenging my thinking or perceptions.
My mother did what you recommended, then took her own life.
I was in the women’s movement when some women were considered sell-outs for shaving their legs or wearing make-up and nail polish. They liked those things and chose to do them. Any civil rights movement, IMO, is only as strong as it is embracing of individual choice. That includes working with supportive mental health professionals who don’t give me “the Look” (scrutiny, questioning, evaluation) and trust what I’m saying is true.
Yes, I have been placed in a coercive setting, several times. I have experienced what is evil about it. I believe in a better model that includes choices and avoids all or nothing since that is the problem with the current system.
Corinna, thanks for this. #5 on the list was confusing to me. Perhaps it is two separate ideas or I’m not getting the connection between genetic research and the efficacy of peer support.
Yes. I like the people I work with. I’m fairly new working in the center where I used to come for peer counseling and groups–just to hang out.
This discussion has me talking with my boss and other co-workers about co-opting “peers”.
Evidently, we don’t do the “specialist” thing and go after medicaid funding as a conscious decision not to do “case notes”. That, by itself, unbalances the relationship. Even with the crisis work at the hospital, no case notes. We are not providing “treatment”…our model is empowerment.
Thank you Sera, for this blog and everyone else who contributed to it. I’m now aware our work has not been co-opted.
Stephen, Fortunately (or unfortunately), we work in an actual ER at a hospital and are paid. “Specialist” is not a term used here. A “Peer counselor” is paid to be on call and in-service.
The hospital and crisis workers still are unsure what to do with us and do NOT understand the job we do. That’s okay. Maybe it’s better. Especially when one of the peer counselors is asked to keep the person in the room and says, “I have been instructed not to do that and to ask you to call security if that’s what is needed.”
The lack of respect for what we do…that undercurrent will take a long time to swim out of. Seeing mandatory holds rescinded after a peer counselor has spent a few hours with someone in crisis demonstrates the power of that relationship and at some point, someone has to notice.
Then again, this is not a cookie cutter group of “peer specialists”, trained, yes, indoctrinated, no.
I agree with “trainings that support people to rethink what has been done to them…” and “not to give recommendations…”
When I read “standardized educational requirements”, I jumped to the kind of blah, blah, blah training the MH professionals I work with offered as an indoctrination at the beginning of our program. Fortunately, all of the peer counselors have had training in a different model.
The experiences they are having at the ER are only serving to reinforce “rethinking…” Future training is to build stronger supports to maintain the mutual support needed to work in that institutional environment without becoming a part of it. Tough. And revolutionary.
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.
Obviously, the peer support we offer is listening and finding the place the person is speaking from so we can be true co-travelers, as we are.
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.
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.
Thanks Sera. Thankfully, the peer counselors’ only job is to provide humane support (arrange for a meal, a warm, blanket, and listen). Sometimes they just hold a calm caring space while someone sleeps, allowing the person to wake up to a kind presence. They don’t do anything related to the involuntary hold. Unfortunately, just being in that setting makes “us” a “them”. 🙁
There IS power in witnessing. It’s not pretty. Not enough compassionate people in the general public know how bad it can get. I want to believe they would be outraged.
I loved this. A post on facebook brought me here. I work in a unique (as far as I know) program with peer counselors on call to support and assist people being evaluated for mandatory psych holds at our local emergency room.
Talk about pulling the curtain back on how mismatched the peer and traditional psychiatric/medical model work, put peer counselors (working in a totally peer-run center) in a hospital, involuntary environment, add cops, insensitive ER staff and well-intended but clueless crisis workers and the direct contradiction between institutional and non-institutional peer counseling becomes painfully obvious.
The movement toward lockstep processes imposed by an institutional, traditional mental-health profession paradigm concerns many of us.
Hey Angie, Ellen here. Great article! I’m so glad to see you and your expertise here. Yes, we’ve learned a lot doing it ourselves. Now, if we can crack the Big Pharma wall between lived experience and practitioners, maybe we can get some compassionate support in the process.
Thank you for this. I have recently tried within a group of fairly well-enlightened people who are attempting to change the “mental health” system that even transpersonally-focused therapists are loathe to give up these concepts. Worse, I think, is condescension seems to be part of the curriculum, no matter what the spin on “treatment” and that becomes the underlying edge to communications.
I would add one more utterance that should be unacceptable. “You’ll have to take these the rest of your life”. I might not have fallen for that one had my mother not committed suicide because the psychiatrist added, “or you’ll wind up in your mother’s condition and nothing will help.” Then he went on to describe the “kindling effect”.
I was a person who got drug after drug added to the protocol, increased dosages and for 13 years, I struggled to care for myself under the influence of so many drugs. After 10 years of increasing anxiety, panic attacks, the addition of a trained service dog to help me in public and a whole host of noxious drugs including Klonopin, the psychiatrist saying, “Well, maybe if we took you off the Welbutrin, you wouldn’t have so much anxiety” gave me the hint. OMG, he is treating side effects of the drugs by prescribing more drugs! This is the get a bigger hammer approach and I had had enough battering.
I’m celebrating four months psych drug free now. The combination of drug neurotoxicity (withdrawal syndrome) and the processing of deep grief and working through the trauma that got buried under the drug blanket is a 24/7 task. I’m grateful for MIA and my friends with lived experience for sneaking me in the key to my own personal cage so I could free myself.
Unfortunately, the video has been removed from youtube because of a copyright infringement claim. If it is viewable any place else, please let us know.
James, I disagree with your again creating a parallel with “stigmatizing” medical conditions for several reasons:
1) You are mentioning illnesses that despite the social judgments applied to them, all have a biologically determinable cause or origin;
2) NONE of those illnesses or “labels” calls into question whether the person labeled as such is competent to function on their own behalf;
3) Once a “mental illness” label/diagnosis is applied, causes for the suffering are less likely to be sought and addressed because drug management becomes the focus; and
4) Anyone so labeled is easily dismissed, incarcerated, infantilized, discounted and otherwise treated as a not fully formed adult human being with civil rights.
Wow, Steve, well said. You covered all the bases in any comment I would have made about this. Thank you.
Well put, MCC. No way I’m getting out of this lifetime without the dark cloud of those labels (I used to call it “dart board diagnosis”) hanging in my wake. They have never been useful (to me) and have only served to make me feel totally screwed up. Now that I’m finding my way out of the psych drug tar pit and starting to realize food and chemical sensitivities (plus childhood trauma) and some other unique individual qualities are underneath all this, I’m pissed, too. I’m all for the label users placing their labels where the sun doesn’t shine.
Great article, Sarah. As I read it, a couple of things occurred to me. One is, I’m finding co-conspirators in the madness revolution doing exactly what you are talking about, not perfectly and not without our own limitations. Nonetheless, the depth of humanity and authenticity I’m experiencing among others who are willing to question and rebel are the healing energies I’m mustering for myself.
My other thought was the longing for humanity and the paucity of that in our culture may be at the heart of what many of us experience when we are bereft of hope. It may be the underlying cause of my own madness. The “illness” is the cultural malaise that spawned a 50 minute hour healing construct. As I wrapped up my last therapeutic relationship that didn’t work (I have one that does now), I mentioned that I would be immediately locked up for being a danger to myself or others, but the mom texting and driving on the freeway with her baby in the car next to me and the psychiatrist handing me yet another Rx for yet another drug are free to endanger me at will.
Well said Alex. For me, that healing road is neither a highway nor the scenic route, sometimes it’s not even a path. Thankfully, others are on their own healing roads and when I toss up a flare, some see it and extend their humanity.
Hooray for your efforts at getting this going Janet. I believe the Sunrise Center will be of great value to many. I’m familiar with RC because I’ve had several friends who’ve used it. Given that it allows a person to express emotions with safety and support, it could be quite valuable.
As someone who is currently in the process of withdrawal, right now recovering from an extreme state I experienced as part of that withdrawal, I think a broader base of supports is necessary. I believe people who have gone through this process after taking the drugs for a long period of time, especially those of us who are older, need multi-disciplinary supports. Nutrition has been a big issue, as is the ability to regulate my daily life and self care given the withdrawal effects. Is there more to the Sunrise Center than RC?
Agreed. The physical part and managing the withdrawals is major. From what I’ve understand, we each go through it differently. I’ve had wonderful peer support, professional and medical support, but no one resource or technique has the whole answer.
Dreamflyer44, here’s what’s dangerous, drugging people to the point where we don’t know what’s true any more, then telling us we have to take drugs the rest of our lives to find peace. My heart goes out to you for having to watch your daughter suffer. My heart goes out to her for being managed in such a way that even if she were to express the thought that she wants to get off those drugs, or maybe take fewer of them, she would be reminded how “ill” she is without them. She is a captive of something with such dire long-term effects, it’s tragic.
On the other hand, if she chooses, on her own, based upon her own adult authority (and with adequate information about the drugs she’s taking and their long-term effects) to follow that protocol, I support her. It’s all about choice, dignity and being recognized, not as someone’s daughter or as “seriously mentally ill”, but as someone who has the basic human right to choose how to live.
Coming off psych drugs is no picnic. I’m going through it. I’m having to deal with the very emotional baggage and trauma that has been masked by those drugs for many years. Thank goodness Janet and her team are taking this on. Those of us who are going through it need this resource because the “mental health” system seems only willing to fund “treatment” that creates dependent, drugged, individuals, infantilized by both system and family members into believing our brains are broken.
Thanks for your reply Dani. Yes, moving through crises without numbing is my goal.
I imagine it will be difficult for any respite that is not peer run (from board level all the way through) to maintain anything like what Afiya has done. The respite here will be a house, separate from a clinical space, but how people get there, the process by which they arrive will be very different. Initially conceived as an alternative to entering “the system”, the contract requires it to serve people already in “the system”. Ironic. Thanks again for the great blog and for the work you’re doing.
My sentiments, too, Fred. Love the term psychpharmagulag. My first stint was in 1974. I wonder what my life would have been like…
Wow, the video really spoke to me. Having just gone through what Marty described, and barely avoiding psych lock up, I can only hope this message will get through. Fortunately, I have a community of loving peers from having worked with them and they were willing to see me through my extreme state by staying with me at home. After 6 previous hospitalizations, I have to say, this was the FIRST time I was able to go all the way through something I think my spirit and soul needed without being drugged out of it and experiencing the awful trauma of lock up.
There’s a “peer run respite” to be opening in this community soon. However, it will be run by a contractor (clinical/medical model) through the County Mental Health department and only serving people who are in the public mental health system. I doubt it will have any similarity to Afiya other than it will be in a house and the people working there will be identified as “peers”. It’s sad, because the vision for this place came from the Soteria model, but the money came through the government. I imagine “compliance” on drug protocols will be one of the first orders of business.
Thanks for the video that makes the differences between clinic and peer respite so clear.
Including mine.
This is not entirely true. Proposition 63 made a huge difference in my community, providing an alternative that, while still linked to and overseen by the traditional mental health system, had done some wonderful innovations and made a huge difference in many people’s lives.
I worked in a program that was tasked with “proving” its effectiveness in using the Prop 63 funds. Unfortunately, that is being defined in terms that are virtually impossible to track and quantify, because of a combination of HIPAA and a lack of imagination among the mental health professionals who grant the funds. My job was directly in this role. The measures of effectiveness were not defined in human terms primarily because those of us who were running the program (peers) were excluded from the evaluation design. All suggestions I made to include qualitative measures were whisked off. I worked for a peer-run organization at the time.
I’m concerned about this article being off in that I experienced something different than it implies. While the money comes through the traditional mental health system, some agencies (like ours) are doing some wonderful work with it. Unfortunately, evaluation is based on an illness rather than a wellness model.
I have followed most of this discussion although I check out when ideologies get heavily debated. Here’s what I see.
In extreme states, academic pursuits and paradigms we use to explain our experiences to ourselves our primary reference is our own personal mythology. My experiences, memories and constructs are the stuff of my distress and my wellness. Everything from my DNA and family lineage to trauma to school experiences, interests and things I don’t even remember that I remember, but mostly my beliefs and ideas about those things form my personal mythology. My senses are constantly gathering, bombarded really because I’m someone who “feels” energy. Sudden flashes of brilliance have come through over the years, illuminating clusters of what is stored in that bank of books I’ve read, illnesses I’ve had, allergies, sensations and ancestral lore. The flash of brilliance shines on truth and lie at the same time. Boom!
Connections are made where they didn’t exist before. Things tumble out like brain salad and observers see “crisis” “suffering” “panic” and an urgency to set it all straight. Each observer sees what I’m experiencing through THEIR mythologies, not mine. We do not have the same ones. No one does. We can be helpful to each other by describing our mythologies and constructs. We may have had flashes of insight that fall into the truth category in that vast library of memory. That truth may resonate with someone else’s personal mythology but they are never exactly the same.
This is why I am hesitant to accept anyone’s direct guidance in healing. I need to uncover my own mythology, unravel it to extract the untruths.
True dialog and learning occurs when we look at our own mythologies, follow the breadcrumbs we have already dropped for ourselves. Castaneda, the Bible, psychiatry, shamanism, transpersonal psychology: any individual piece could be the scary place we are healing ourselves from or it could be the place our breadcrumbs lead us to respite. It is unique and individual. In my paradigm “collapsing” the barriers goes to the individual who is experiencing the extreme state. That person is the ONLY one who can find the breadcrumbs.
Amnesia, I read your comments earlier…just so you know. This has been such an incredible discussion, I’ve not commented everywhere I was moved to.
YES, Alex! You are saying exactly what I’m thinking about this discussion and saying it very well. Thank you. It sounds like you and I have walked similar roads although I’m just now coming off the drugs and out of the stupor. I’m looking forward to my future with a clear head. I value and no longer fear the unique perception that lives underneath my experiences with madness. One thing that remains is the disenfranchisement. I won’t be able to return to the privilege I once enjoyed. My frame of reference changed. I’m grateful for MIA and for Natalie and the attempts many are making to address the void into which so many of us drop. I’m just not seeing the change happen within academia.
Alex, you’re singing the song I’m humming. 🙂
I also read Natalie’s reply. The challenge when academia take the stage is the energy becomes study focused outwardly. While people in every walk of life may have experienced trauma, stress, extreme states, etc., academic study is inherently privileged.
Studying my own experiences, then seeking the places where I see myself reflected has helped me embrace my personal mythology. That study has been self-directed. I would love to participate in dialogs about this, but I do not know how study by academics could suspend privilege in a way that would make any difference in scholastic circles.
Thank you for your reply, Natalie. If it is Both/And, I believe those of us who have had extreme experiences are really the ones who could become the educators. Perhaps that is more my point. It would be refreshing to be looked to for expertise with extreme experiences rather than being “studied”. Since there is no field of study that cuts across those disciplines, people like me develop our own understanding and could provide the perspectives that break open the boxes. I had missed your point that those doing the studies in the various disciplines are not looking at extreme experiences. Definitely lost opportunities for all of us. I appreciate your thoughtful, broad view.
What a great discussion to start. The call to coalesce appears to have a basic flaw. It focuses on academics, the need to study, examine and describe some phenomena according to a particular set of beliefs.
What if, as individuals having anomalous experiences, we own our own creation? What if my life experience and personal mythology, my quest for the holy grail of wellness. including my anomalous experiences, are unique? What if applying any paradigm actually prevents me from reconciling some aspect of my existential pain because while one piece may fit, several others are missing or appear to conflict? What if I need to be the studier, not the studied?
I think the bridge building starts with those of us who’ve had sufficient anomalous experiences to speak to our personal paradigm and how it fits/doesn’t fit with the previously observed in academia. It’s kind of like reversing who asks whom to dance. My healing came when I started finding others with similar experiences who can share their deeper stories. As I listen, I find many parallels, but am struck by the uniqueness of each person’s own mythology, unless they are tied into the medical model. That mythology is fairly consistent.
Corrine, thank you so much for your story. You reinforce my resolve as I am approaching nearing the end of a long withdrawal, many drugs. You mentioned working with mental health professionals in a a peer role. My work in a similar setting was my wake up call. I was treated as a nincompoop by a man who was at the same level in the county human services system as I had been in my previous career. He had no idea who he was talking to. I realized he was treating me that way ONLY because he knew I had a diagnosis. The behavior is inexcusable regardless of my history, but so starkly due to the diagnosis, it startled me into reality. His behavior and the almost identical behavior of my psychiatrist were affirmations of my decision to free myself from that oppression.
Your kids are fortunate to have a mom they can see took charge of her life (and theirs). You help the rest of us by your example.
Beautifully written Matt. Thank you.
I’m down by 4 (all the heaviest ones), working on #5, with one more to come off of after that. I feel SO much better than I’ve felt in decades. My natural self never caused me the extremes of anxiety, disorientation and distress as the drugs did. I don’t know what to expect as time goes on. I am coming out of the fog with a better sense of who I am and hoe my choices either increase or ease my suffering. I can assess the options and make those choices with a clearer head. What a difference.
Sa, thanks for pointing this out. I do qualify as the “crazy aunt”, but am becoming aware that label is both unkind and untrue. It’s also the reason why Elizabeth can say these things and be listened to. I can say these things and watch my loved ones faces grow concerned as they mull over my becoming “symptomatic”.
Thank goodness for those cracks in the facade Chris. I have my little chisel and hammer out and am working away at making them bigger.
Follow up comment. What about making your play available for production in community theaters around the country? I know a director in my area I would love to approach with the idea of producing it here.
Telling my story aria. Upped, added to, changed…looking for the right balance.
Elizabeth, you have done what people who go into this drug nightmare through a psych hospitalization can’t do. Anyone with a history like mine (hospitalized 6 times), has a helluva time standing up to friends, family and anyone else who “cares” to say, I’m going off these drugs. Once my head started to clear, I realized the last 13 years of my life was like your 18 months because of the drugs. In the meantime, their effects prevented me from doing the work necessary to deal with the grief, trauma and poor lifestyle choices that led up to each of the hospitalizations.
The answer is to keep talking about it. I’m surrounded by “peers” who are convinced their drugs are essential to their stability. As they believe it, so it’s true. If there is a way I could participate in a larger effort to address this, I want to know about it. I did post your talk on my FB page and urged people to watch it.
Another comment about people believing in us. YES! I started with 2. That number grew as I started to believe in myself. The rest of the people in my life believed in illness, doubted my judgment or at the very least said they wanted to “check in” with me more often. It has taken several months, but those who were benevolent skeptics are seeing the huge difference in my being present, calm, self-possessed and happy. Now I want to continue to be one of the 2 for someone else.
Thank you for your encouragement Lauren. I’m putting the Dialogues in my calendar.
Lauren, you’re telling my story, not in exact terms, but so similar. Schizophrenia was my first diagnosis of many. We have a friend in common, someone who is supporting me in claiming/reclaiming the person I was born to be. I too, am writing. I’m inspired by the work you have done. I’m emboldened by it even as my decision to fire my psychiatrist and work my way off the drugs has people who love me looking askance and examining me for signs of pathology. The more of us who are strong enough to break free and talk about this, the more will be able to.
Thank you SO much.
Ute, Depending upon how the peer support is put into place, there is the OPTION of building a culture within a culture. As a gay person, I know how that works. I EXPERIENCED it while working with peer support offered on a contract basis by a group of people who conduct their own activities within that environment, not working FOR the mental health system, working within it. The alternative paradigm is possible in that context.
I’m not even sure suggesting is the best idea. Asking what a person thinks they could do or want to do. People most often come up with the solutions based on their abilities, needs and where they are on their own paths. We may know what we would do. I believe in deep, reflective listening with an open heart trusting that the relationship founded on that basis helps people move forward. At the most, I would listen until the person has talked it out and ask if they have identified their options. See what they say. Then ask if they want a suggestion before offering one.
It’s about establishing a workplace culture in which the job and language associated with the work reflect those values. In my experience, people self-select in and out of work environments and like every other situation, the right match-ups seem to happen miraculously.
Yes. That’s what has helped me the most. Since I worked in a peer-run center, I was able to identify those who had dealt with coming off drugs and other issues. Through those affiliations (and MIA, etc) I have been able to educate myself. In that setting, there were also people steeped in the medical model and heavily drugged. The good thing about that was I was able to see the range of experiences and how beliefs affect well being.
Another note. This discussion sounds very either/or, black/white. It’s not. Lived experience creates and intangible energy that people transmit and feel based upon how a person brings themselves to the relationship. “Technique” is not a part of this equation. Genuine presence without ANY preset outcome (neither “helping” nor “mutual growth”) is probably the most powerful point of connection.
jm,
I appreciate your clarifying. My “friend” observation came from video on the website. Providing support requires self-awareness, doing our own work, but not in a conversation to help someone else. When I’m providing support, many things come up, but it’s not about me at that moment. I could be very uncomfortable with what someone is saying, but I need to make sure how I deal with that does not shut them down.
The peer counselors I know work in extreme situations with people in an ER, on mandatory holds. Sometimes those people are “shelved” at the ER until a psych bed can be found. The peer counselor can’t stop action and launch into what’s coming up for them, especially when their lived trauma is usually triggered by nurses, doctors and clinicians they are interacting with. They have to rely on their back-up support peer, available by phone, whose purpose is to help them process what happened (or is happening). These peer counselors don’t have as much difficulty listening, empathizing and being with another human being as they do in dealing with the professionals.
For peer support to be truly effective in a multi-disciplinary environment, particularly in the midst of crisis, a person has to be prepared NOT to process their reactions with someone other than a person designated for that support. That’s why I believe peer support in any environment needs at least one peer back-up. A single peer support person working in a multi-disciplinary environment is deadly.
@Winifred, the facilitators only manual was not available to me. The $35 one is like a workbook. It has great material in it. I’m not dissing the entire approach. It actually has more promise than the certified peer specialist trainings which, in my view are more indoctrinations. If you are looking into IPS, I recommend you buy the $35 manual. It has some great ideas and exercises. I agree with the general philosophy. I also believe there are other techniques to put it into practice and, in some cases, the listeners’ skills and ways of communicating are probably the key in making a true connection.
Ute,
There is no room to reply to your response, so I’ll say it here, hoping you will see it.
I know people who have completed IPS and people who are peer counselors and have gone through different (not peer specialist) training. The esoterics of IPS come through in your explanation. Those esoterics may become felt experience. With a good workshop leader, they can be felt. The skills, ability to self-reflect and even individual strengths of each listener vary so greatly, that putting those esoterics into practice IS the challenge.
I believe a philosophy that also translates to a listener’s practice of self-awareness, continually choosing to have an open heart, but most importantly to listen to the other person’s world as the speaker experiences it, not as the listener does. I think that’s the philosophy of IPS, but people who have not adequately processed their own stuff may (and in my experience do) have difficulty allowing someone else’s lived experience and perceptions to stand on their own.
Having worked in a peer-run peer center, I know if someone calls themselves a “friend”, the expectations of what a “friend” does get formed.
I read the manual you can buy for $35 on the website and watched the videos. I cringed when Sherry said, “As your friend…” and thought about the many, desperate people we serve, how difficult it would be to set boundaries when an expectation might be appropriate between friends, but not within a peer center.
I investigated IPS and think the mutuality model is wonderful, since it is mindful of power. With all I had heard about IPS, I bought and read the training manual. In my opinion, the major flaw is the possibility for a person who needs to be heard getting waylaid by the listener making it about them and their trauma, what’s “coming up” for them. In my experience, the truly effective peer counselors (we don’t call them “specialists” here) are those whose listening skills allow the individual needing support to explore while helping diffuse the current trauma. I did not like the IPS model having to listeners referring to themselves as “friends” because that sets up unrealistic expectations that can later create a sense of betrayal.
I think most peer specialist training presumes a medical model mini-me role, maintaining a power differential and subordination.
I worked for a peer-run organization. Sadly, funding sources over-shadow the true alternative possibilities. However, within the peer-run organization, there is an ability to examine our individual paradigms and beliefs. Starting a group about getting off drugs is not feasible with mental health funding, though. The other part is, “peer-run” could also mean the peers running it are completely bought into the medical model, themselves on heavy drugs, fearing EVER getting off them. The culture in that setting IS a drug culture. That fear can keep people stuck in identifying with their “illness” and “symptoms”. In a peer-run setting, the culture of belief can also undermine possibility.
Thanks Someone Else,
Fortunately, I’ve been off the neuroleptics for quite a while, now it’s just the anti-convulsants. I’m watching carefully and journaling to keep track. Super sensitivity has been at the root of what has been dubbed “mental illness” for me, so my strategy is to take care of that FIRST and make it a priority. I so appreciate your encouragement.
Stephen,
This was a 3 day workshop. As you might imagine, there is a lot of conceptual groundwork and nuance. I’m at a lost to explain it in this forum. I’m not sure it lends itself to “group work” if I understand what you mean.
In my direct experience with my own psychiatrist, even the suggestion that I might have done research and wanted to reduce and get off the drugs prompted a childish, resentful, oppositional reaction. I wished I had a stealth video camera, even if it was to record the conversation. I was shocked. He’s history.
Thanks Stephen. Do you have a link to that blog by Insel? I googled it and couldn’t find that particular one. I’m considering developing some curriculum for peer support introductory workshops. I am gathering references from other communities of practice to educate about the limitations of what is actually known about mental “illness” with articles from a variety of sources.
About examining our own “stuff”, I had great success facilitating a workshop that guided people through the process of looking at how they were viewed through a diagnostic eye, then have them write their own stories through the trauma model. They provided peer counseling to each other. This required no role play. It was real. The process was challenging, but allowed them to look at a big chunk of what the mental “health” industry superimposes and shift their thinking to step aside from that and make true connection. It also became very clear who didn’t want to look at their stuff and felt more comfortable in a power role.
Peers, operating under any philosophy, are under increasing demand because there are not enough clinicians to address the epidemic of “mental illness”. Having worked at a peer support center with people in crisis, homeless or otherwise marginalized, I saw these things:
1) Poverty and economic collapse created a surge in crises, flooding ERs and psych hospitals with people in despair;
2) “Treatment” usually in the form of diagnosis for bipolar disorder or depression came along with, on average, 2 psychiatric drugs and release back to the streets, usually in worse economic or housing conditions than when they went in;
3) Impoverished and needing continued medication and “monitoring” they wind up in the public mental health system, developing dystonia, dyskinesia, losing teeth, becoming sluggish and unable to function; and
4) Becoming totally, severely disabled, physically and mentally by the drugs and emotionally by the increased stigma and marginalization.
Yes, peers are needed, but at what point? The mental illness industry is cranking out “consumers” who may never get their lives back. Recovery, requires a peer model that serves people before the crisis. Therapy is unaffordable. How do people struggling with stress and economic pressures get support? People with health insurance have already gone to their doctors and are likely hooked on the drugs. Although their lifestyles may have created their depression and anxiety, they have become “consumers” without hitting the wall because they have resources “consumers” need.
People in poverty who need peer support the most are those who haven’t yet hit the wall and still have an opportunity to build community and resilience before their adulthood is taken away. The question is, who funds it?
Agreed, agreed. I fired my psychiatrist a month ago. It was the first time I felt I had reclaimed my adulthood in 13 years. Now that I’m talking about harm reduction and withdrawal from the drugs (gradual, conscious, cautious), “peers” (not all thank goodness) are showing fear. The fear perpetuated by the myth about having to take drugs for the rest of your life drives WAY too many peers in recovery.
I couldn’t have said it better. I’m currently in a long-term process of withdrawal from the drugs prescribed to treat “bipolar”, drugs that ultimately disabled me and made it nearly impossible for me to recover. Thirteen years later, I’m taking my life back, ALL because of peer support and sharing resources.
Sadly, the center for which we work will not and would not offer a support group for people who want to reduce or get off their medications because: 1) that’s counter what the funding sources want; 2) it scares NAMI; 3) we are not doctors and should not be giving advice on medications.
We do not have a place to meet. Thank goodness we found each other, funding or not.
I loved the blog. Jonah, I’ve had both experiences–having been held, forcibly drugged, subjected to a wide range of paternalistic, disempowering, debilitating treatments. I’ve had many labels and was finally told that “bipolar disorder” fit because the medication for it “worked”. I apologize for all the quotation marks.
Fortunately, I’ve also had a wonderful therapist since 1988. Although she doesn’t experience them, she does not make my paranormal experiences “crazy”. While she is trained in the traditional medical model, she has taken interest in my life path and often marveled at how well the pavement comes up to meet me.
It is truly remarkable for someone who has been thrown in the slammer (how it feels to me) 6 times to pull out of the vortex. I’m in the process of that and appreciate those who accept all the different ways we find ourselves not-ill.
That was my thought. In reading what she wrote, I wondered where she could talk about those unresolved experiences, obviously still distressing her.
It must be extremely difficult to be in the public eye, sliced and diced by media (and others) while trying to sort through experiences that involve psychotropics. A diagnosis and human test tube experiments are hard enough for someone who can deal with it privately.
Although I appreciate what I have found here at MIA, all or nothing doesn’t work for me. I have had wonderful (not drugged) support over many years to help navigate life as I perceive it. It came from the mental health profession. In fact, in the 70s, my psychiatrist helped me find the tools among my personal resources to ride the waves. When I took drugs, it was temporary. Actually, I chose a lot more recreational drugs than I have ever been expected to take.
My therapist has gone where I go without challenging my thinking or perceptions.
My mother did what you recommended, then took her own life.
I was in the women’s movement when some women were considered sell-outs for shaving their legs or wearing make-up and nail polish. They liked those things and chose to do them. Any civil rights movement, IMO, is only as strong as it is embracing of individual choice. That includes working with supportive mental health professionals who don’t give me “the Look” (scrutiny, questioning, evaluation) and trust what I’m saying is true.
Yes, I have been placed in a coercive setting, several times. I have experienced what is evil about it. I believe in a better model that includes choices and avoids all or nothing since that is the problem with the current system.
Corinna, thanks for this. #5 on the list was confusing to me. Perhaps it is two separate ideas or I’m not getting the connection between genetic research and the efficacy of peer support.
Yes. I like the people I work with. I’m fairly new working in the center where I used to come for peer counseling and groups–just to hang out.
This discussion has me talking with my boss and other co-workers about co-opting “peers”.
Evidently, we don’t do the “specialist” thing and go after medicaid funding as a conscious decision not to do “case notes”. That, by itself, unbalances the relationship. Even with the crisis work at the hospital, no case notes. We are not providing “treatment”…our model is empowerment.
Thank you Sera, for this blog and everyone else who contributed to it. I’m now aware our work has not been co-opted.
Stephen, Fortunately (or unfortunately), we work in an actual ER at a hospital and are paid. “Specialist” is not a term used here. A “Peer counselor” is paid to be on call and in-service.
The hospital and crisis workers still are unsure what to do with us and do NOT understand the job we do. That’s okay. Maybe it’s better. Especially when one of the peer counselors is asked to keep the person in the room and says, “I have been instructed not to do that and to ask you to call security if that’s what is needed.”
The lack of respect for what we do…that undercurrent will take a long time to swim out of. Seeing mandatory holds rescinded after a peer counselor has spent a few hours with someone in crisis demonstrates the power of that relationship and at some point, someone has to notice.
Then again, this is not a cookie cutter group of “peer specialists”, trained, yes, indoctrinated, no.
I agree with “trainings that support people to rethink what has been done to them…” and “not to give recommendations…”
When I read “standardized educational requirements”, I jumped to the kind of blah, blah, blah training the MH professionals I work with offered as an indoctrination at the beginning of our program. Fortunately, all of the peer counselors have had training in a different model.
The experiences they are having at the ER are only serving to reinforce “rethinking…” Future training is to build stronger supports to maintain the mutual support needed to work in that institutional environment without becoming a part of it. Tough. And revolutionary.
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.
Obviously, the peer support we offer is listening and finding the place the person is speaking from so we can be true co-travelers, as we are.
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.
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.
Thanks Sera. Thankfully, the peer counselors’ only job is to provide humane support (arrange for a meal, a warm, blanket, and listen). Sometimes they just hold a calm caring space while someone sleeps, allowing the person to wake up to a kind presence. They don’t do anything related to the involuntary hold. Unfortunately, just being in that setting makes “us” a “them”. 🙁
There IS power in witnessing. It’s not pretty. Not enough compassionate people in the general public know how bad it can get. I want to believe they would be outraged.
I loved this. A post on facebook brought me here. I work in a unique (as far as I know) program with peer counselors on call to support and assist people being evaluated for mandatory psych holds at our local emergency room.
Talk about pulling the curtain back on how mismatched the peer and traditional psychiatric/medical model work, put peer counselors (working in a totally peer-run center) in a hospital, involuntary environment, add cops, insensitive ER staff and well-intended but clueless crisis workers and the direct contradiction between institutional and non-institutional peer counseling becomes painfully obvious.
The movement toward lockstep processes imposed by an institutional, traditional mental-health profession paradigm concerns many of us.