The first time I tried to write about peer support—that emerging form of “service delivery” in which one person in recovery from what is described in the field as a “serious mental illness” offers support to another person who is in distress or struggling with a mental health condition—was in 1994. The manuscript was summarily rejected from an academic journal as representing what one of the reviewers described as “unsubstantiated rot.” That same article was eventually published 5 years later,1 and used by the President’s New Freedom Commission on Mental Health to support its recommendation that peer supports be implemented across the country.2 Now, more than a decade later and as peer support arrives at something of a crossroads, both of these reactions remain instructive.
First, there continues to be a large, unmet need for peer support across the country. Over thirty states have already secured Medicaid reimbursement for peer support, and many other states have found ways to fund peer support without Medicaid. Yet there remains a tremendous need for people to receive the message that recovery is real and possible for them, and to benefit from the support peers can provide. At the same time, there remain influential people in mental health systems (and government) who continue to think that peer support—along with anything else related to the concept of “recovery”—is nothing more than “unsubstantiated rot.” Perhaps this situation is no different from that of the diffusion of other innovations in medicine or society at large—like the transition from horse drawn carriages to cars—but it strikes me as an important consideration in deciding the future of peer support. And that is what I would like to address in this piece.
What is the nature of the crossroads at which peer support currently finds itself? As the discipline grows, so do concerns that persons in recovery are increasingly being exploited by their employers to provide more of the same unhelpful services that were already being provided by mental health staff but at a lower cost, with the added benefit of giving their agencies the appearance of being “recovery-oriented.” This reality was reflected all too clearly in a recent article in which peer staff were touted as a cheap way of helping “people with mental illness stay on their medications.” 3 These kinds of developments provide further evidence to self-help/mutual support advocates that peer support should not be provided within the context of mental health services at all, but should remain separate and apart from the mental health system, continuing to be the valuable “alternative” to treatment mutual support has been since the 1960s. From such a perspective, persons in recovery who occupy provider positions in conventional mental health programs are seen as committing a kind of betrayal. They are allowing themselves to be exploited (for pay) as a means of making it possible for systems of care not to have to change the same practices that harmed them in the first place; an instance of what Freire observed as the oppressed becoming oppressors.
There is no question that this does happen. I have seen it firsthand, and have been deeply disturbed by the ways in which peer staff have been under-used, misused, and unwittingly co-opted by mental health agencies that see no reason to change how they do business. But this is only one side of the equation. At the same time, but in different settings, I have seen the transformative impact that peer staff can have on the culture of mental health agencies. I have seen those people who viewed the introduction of peer staff as “unsubstantiated rot” become converts by witnessing the effects generated by these staff in the persons whom they support—people the staff had given up on as hopeless, impossible to work with, too “high risk,” or too disabled. One psychiatrist who had openly laughed in my face when I first suggested hiring peer staff acknowledged recently that he has become a staunch advocate of peer support because he has seen how much more peer staff can do with people than he ever was able to do as their physician. And he sees how much easier his own job has become as a result.
So, why not just tear the mental health system down and replace it entirely with peer-based supports? Why bother to transform a fragmented, over-medicalized, under-funded, and frequently toxic system—in part through the introduction of peer support—when it might be better just to offer caring, reciprocal, genuine human relationships?
The answer to which I have come thus far is that we need both. Peer support, like other innovative supports (e.g., supported employment), reaches only a small fraction of those persons experiencing distress or struggling with mental health issues. Even were funding for peer positions radically increased overnight, there would remain a need for other forms of care as well. That is because, compared to the large number of persons presenting for mental health care through conventional channels, very few people make use of self-help or mutual support options available to them in their community. This is not only due to the medicalization of distress, the resulting social habits, and a history of disproportionate funding (although these remain significant influences), but also due to the fact that people do not necessarily want to become part of a cause or a(nother) community, especially ones with which they do not identify personally. The majority of people fighting against mental health care are people who have been hurt by it. Other people, who may not yet have experienced such trauma at the hands of ‘helpers’, may not necessarily want to advocate for or against anything. They may simply want to get on with their own lives as best they can. For those people, and for the even larger number of people who experience mental distress and neither seek nor receive any help at all—formal or informal—new and other approaches are sorely needed. And, importantly, people need to have the opportunity to choose those forms of care and support that they will find most safe, comfortable, culturally relevant, and effective for them.
The partnership between peer supporters and non-peer (or non-disclosed) mental health staff is still early in its evolution. Before abandoning the mental health system, the millions of people who already rely on it, and the millions more people who do not yet seek help or derive any benefit from it, let’s see if we can make it better—in part through the efforts and influence of people in recovery. People in recovery know three very important things: 1) the ways in which mental health systems currently help people; 2) ways in which mental health systems currently fail and harm people; and 3) ways in which mental health systems could be better at educating, engaging, and supporting people and their loved ones in their own recovery journeys. If we can invite, value, and benefit from their accumulated wisdom, ideas, and energy, we might be able to create together a system that is more accessible, respectful, and responsive to all those in need—whether or not they choose to join, or to become invested in helping to further improve, the system that cared for them.
Works cited:
1. Davidson, L., Chinman, M., Kloos, B., Weingarten, R., Stayner, D., & Tebes, J.K. (1999). Peer support among individuals with severe mental illness: A review of the evidence. Clinical Psychology: Science and Practice, 6: 165-187.
2. U.S. Department of Health and Human Services. (2003). Achieving the promise: Transforming mental health care in America. Rockville, MD: Substance Abuse and Mental Health Services Administration.
3. Vestal C. ‘Peers’ seen easing mental health worker shortage. Stateline, September 11, 2013; 1–3. The PEW Charitable Trusts.
I do wish completely peer run alternatives would be financed and set up throughout the country. I recently became a certified peer specialist. However, while in training for that one of the people smugly proclaimed that mental illnesses are caused by “chemical imbalances in people’s brains,” and the instructors did not bother to correct this fraudulent statement.
I’m a strong and intelligent person who has recovered from antidepressant induced “bipolar,” I’ve been drug free for many years. And I don’t think the mainstream mental health community, where I currently live at least, yet wants to confess that creating “mental illnesses” in people completely with drugs is inappropriate behavior. And quite honestly, telling peers they can’t discuss adverse effects of drugs because that’s the doctor’s role, prevents a peer from actually helping at least a percentage of the patients. And I have zero desire to be a “cheap way of helping ‘people with mental illness stay on their medications.'”
I believe the “professionals” really should be listening and learning from those who healed themselves, and making a real commitment to start weaning patients off of drugs. I think the professionals should stop advocating belief in fraudulent “science.” If the mental health professionals want to continue spouting belief in the “chemical imbalance” theory, I know I can’t work with such people.
Truly, non-DSM stigmatizing, completely peer run alternatives are needed nationwide. How long will it take for the US government to realize that the psychiatric industry’s defaming and disabling millions of people is neither cost effective for the country, nor respectful treatment of fellow human beings?
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I facilitated a support group for 8 years in the 90’s. Gave it 20 – 30 hours of my time each week, on a volunteer basis. One of the reasons I became a support group leader is because I was diagnosed with bipolar II within months of taking an anti-depressant for the first time, specifically desipramine.
Four years later, I began seeing a second psychiatrist who, after thoroughly familiarizing himself with my history, explained that my bipolar II symptoms may have been caused by the antidepressant, and he slowly took me off the medications I was on. It was difficult because I have a generalized anxiety disorder, so those symptoms worsened, but we did it slowly, and I never had another hypomanic episode. That was more than 15 years ago.
I did not heal myself. I was never bipolar. My hypomania was caused by the anti-depressant medication desipramine. You’d think I’d be anti-medication. I’m not because I know people who have serious mental illnesses who have been helped by taking medication. And my husband is alive today thank to the medication he takes for his heart condition.
For this and other reasons, my only bias regarding treatment is to do what works. Some people need medication, some need a specific nutritional supplement regimen, some need a specific diet, some need talk therapy, some need peer education, support, and/or skills training, and most need a combination.
In more recent years, I’ve learned that trauma can mimic mental illness, but the treatments are very different.
It’s bias like yours that help some people, but hurt others. Have seen it over and over again, by psychiatrists, psychologist, master level therapists, coaches, and peer support leaders.
My personal approach addressing problematic mental health conditions is to start with the approach that has the least potential to harm and work up from there.
When our son began experiencing mild psychosis, we recognized what was happening immediately because my brother has schizophrenia. We immediately got him referred to a child psychiatrist and began the three week wait.
I was terrified, because I knew that the his brain’s white matter was slowly being destroyed.
During that time, we contacted a friend – (whose mother suffered with psychosis, untreated) – and who had studied orthomolecular medicine to help her two children. She started our son on a specific nutritional supplement regimen immediately.
We saw the psychiatrist. He was formally evaluated and diagnosed, and I’m happy to report, our son never took a psychiatric medication and slowly, over a six month period, completely recovered by continuing to take the nutritional supplements, sleeping, a lot, and traveling with my husband.
He went on to complete his four year degree and currently is working within his profession.
He believes what happened to him was caused by using a hallucinogen on four occasions over a period of a year and using marijuana infrequently.
He did not heal himself. He stopped using drugs, and he used nutritional supplements and rest to get better. He was lucky. I meet many on a regular basis who are not so fortunate.
I beg you to question all bias and to understand that there is no one “right” treatment or approach, only the one that works. Only by doing this will you truly help people. Informed is empowered.
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I was terrified, because I knew that the his brain’s white matter was slowly being destroyed.
As far as I know applying the kindling model in relation to psychiatric illnesses is… controversial.
I beg you to question all bias and to understand that there is no one “right” treatment or approach, only the one that works. Only by doing this will you truly help people. Informed is empowered.
Well, from reading your post it seems like you’re still viewing things through that made up lens of psychiatry but i’m happy things worked out for you and your son.
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Blah italics didn’t work there, 1st and 3rd paragraphs are from the above post.
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My comment regarding the destruction of my son’s white brain matter was based on research findings presented at a NAMI Conference in 2006 that was then reported in a NAMI publication that same year. I tried, but couldn’t access the article because I’m not a dues paying member of NAMI, but I did find numerous studies online discussing white and gray brain matter changes associated with psychosis.
Orthomolecular medicine is different from psychiatry, though some psychiatrists do practice orthomolecular medicine. It’s the approach we used to treat our son’s psychosis.
We established a relationship with a child psychiatrist immediately so all options would be available to us if our son’s psychosis significantly worsened. Luckily for us, it didn’t. As a result, we only saw the psychiatrist once.
No anti-psychotics (or other medications) were prescribed for or taken by our son. He has since been symptom free for 8 years.
While medication did not help me or my son, that doesn’t mean medication is never helpful.
The ideal, in my opinion, is to understand the short and long term needs of the individual, then to pick one or more treatments to try while being mindful of the potential risks and benefits of each treatment. I can think of only a few circumstances in which I’d try medication first.
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You might be interested in this: http://www.madinamerica.com/2013/06/antipsychotics-and-brain-shrinkage-an-update/
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Uprising, thank you for taking the time to share the link with me. It’s discouraging, but better to know than not know.
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Winifred,
Well, I apologize, because apparently I did not clearly enough state my perspective. I am not actually anti-medicine. I have read many patient comments, medical journal articles, interacted with other patients, and completely understand the drugs help some people. But also understand there’s a lot of misinformation out there. And I have no problems with people taking meds, if they are beneficial to them, and the patients have been given honest information about the short and long run problems with the drugs prior to taking them. My issue is with doctors coercing patients onto drugs (with lies like the chemical imbalance theory or threats) or forcing people to take drugs.
And, I too, didn’t actually “heal myself,” because I was never actually bipolar either. And my husband is dead today, possibly because he stopped taking his heart medicine. The etiology of my supposed “bipolar” was the adverse withdrawal effects of the supposedly “safe smoking cessation med,” Wellbutrin.
I was not, however, as fortunate as you to deal with ethical and honestly informed doctors. And I personally have extremely adverse reactions to the “bipolar” drugs, in my case I was made psychotic within two weeks of being put on an antipsychotic. But my doctors wanted to cover up this “Foul up” with their “new wonder drug.” I actually had to lie to a doctor, trick him, and tell him his drugs weren’t making me ungodly sick, in order to get him to wean me off his (I now know) major drug interaction laden “bipolar” drug cocktail.
Should patients really be required to lie to doctors to be taken off drugs they don’t react well to, because doctors want to believe their “wonder drugs” work well for all people (because they have the right to force them onto many)? Or should doctors listen to and respect their patients, and not force a patient onto every drug within a drug class, after the patient suffers from a horrendously adverse reaction to one or several drugs within that class of drugs?
I’m glad your son is doing well. I’m not certain there’s actual credible medical evidence about psychosis actually causing brain atrophy, however, since it’s now been proven that the antipsychotics are known to cause atrophy of the brain. But I absolutely agree proper diet and nutrition, and a healthy lifestyle in all respects, are very important to one’s mental health.
My concerns are about the psychiatric industries’ lack of informed consent, misinformation and / or cover ups regarding the fact not all people react well to their drugs, coercion and forced treatment, and general disrespect for their patients. People are not lists of symptoms, and real life problems are not caused by “chemical imbalances” in people’s brains. And it’s unethical to cover up people’s real life problems by simply defaming, discrediting, and claiming people are not credible because they’re “mentally ill.” (According to all my medical records, my doctors actually were trying to cover up a “bad fix” on a broken bone and medical evidence of the sexual abuse of my small child.) And I guess I do have extreme concern that the psychiatric drugs cause the symptoms of the serious DSM disorders, in a percentage of people, since that was my personal experience.
I am still trying to overcome my “biases” and anger at betrayal by those in positions of power who abused it for unethical reasons, I must confess.
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Someone Else, I forgot to check back until today so am just now seeing your response. Apologies.
One of the things I’ve learned over the years is that medical quality of care varies greatly. I believe you. If I understand you correctly, you were fine until you started to come off the Wellbutrin and began having bipolar like symptoms, followed by being placed on other medications which led to even more adverse symptoms. Thank goodness you had the good sense to find a way persuade your doctor to help you come off all those medications and you’re okay now.
It saddens me whenever I hear stories like this.
I, like you, believe strongly in doctors and patients partnering in all decisions regarding their care, in science based patient education, and in informed consent.
What’s sad is that these were considered best practices 25 years ago, and I’m not sure how much progress has been made.
As an advocate, I feel it’s important to educate the person receiving care, so he or she can go back to their doctor and begin the partnership process by sharing information, asking questions, and making changes as needed. And if that’s not possible, or discouraged, I then feel an obligation to support them in transitioning to a new doctor.
But to stop there would be wrong. I think we also need to educate people about all of their treatment options, not just medical treatments. In my experience, that’s where books written by well regarded experts in the field, advocates, education and support groups, online discussion forums, websites like this, workshops, and conferences really make a difference.
I wish you well in your continued efforts to help those who need your help.
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” think we also need to educate people about all of their treatment options, not just medical treatments.”
And that is where most doctors get dismissive at the voodoo medicine and Dr Google (which for me personally has a better reliability than actual doctors).
But that’s not the main problem – the main problem is that is psychiatry patients often have little or no say at all about their treatment lest they’ll be coerced in the most brutal ways which are incidentally described as torture by UN.
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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.
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Seventhsence,
I’m glad you have a support group, and good luck as you wean off the “bipolar” drugs. You can do it, I did. I do want to recommend researching neuroleptic induced super sensitivity psychosis, however, as mania and / or psychosis are a withdrawal symptom of the bipolar drugs. But, once you get through it, you can heal. Best of luck to all in your support group.
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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.
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Would it be possible for peers who work within the system also to set up an informal support group that is not affiliated with the place they work at and basically direct people there where you can then “privately” discuss these issues?
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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.
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Hi B and seventhsense,
Glad to read your recent suggestions about survivor peer networking with the ones who work in conventional agencies.
I am troubled when I learn peer support workers receive supervision or mentoring only be conventional staff; how can they possibly sustain the lived attitude and values of being a peer and offering contact for building mutuality if they are totally immersed in a conventional mh treatment ‘culture’?
Meeting up with independant survivor peer acticists and workers I see as a necessary personal and collective ‘nurture’ most needed by peers working within mh provider hierarchies and medical work ‘cultures’.
Thanks for the emphasis on this ‘vital’ issue of survivor peer networking.
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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.
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Larry, thanks for exposing the following: This reality was reflected all too clearly in a recent article in which peer staff were touted as a cheap way of helping “people with mental illness stay on their medications.” 3 These kinds of developments provide further evidence to self-help/mutual support advocates that peer support should not be provided within the context of mental health services at all, but should remain separate and apart from the mental health system, continuing to be the valuable “alternative” to treatment mutual support has been since the 1960s.
One thing that your article does not explore: the potential benefits of peer workers organizing. Labor unions do more than just earn better wages for members. They also create better job security and working conditions for members. With greater job security, peer workers will not be afraid as much to speak out when management tells them to perform their job in a manner that would contradict the very principles of recovery. Just my two cents worth.
You are an excellent writer. This community rocks! Like other parents with adult children who are stuck in the system, I visit this site to to obtain new, unbiased information about psychosis and medication. Sometimes, the information is scary. But in the long run, the information is fortifying and provides direction.
I pray for the day when my daughter will receive ample peer counseling to counter the medical propaganda she has been forced to accept under our states commitment laws . If it must be delivered apart from or outside the mental health system due to the obvious co-optation and conflicts of interest, so be it. Until that day, keep speaking the truth!
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I’ve met a lot of people who are not abandoning the mental health system. What would they do without their precious pills? They, in their minds, and because some doctor told them so, keep them out of the “hospital”. Many of them are “in recovery’, and many of them are “certified peer support specialists”. I’d like to point out that this industry is attached to that industry, and is very much a part of it’s expansion. I worry when the mental health industry expands because that means there is more “mental illness” in the world. I like independence, and I can do without that “sickness” that is dependence. I had enough of that kind of thing in grade school.
I’m happy without the mental health system. I wish a few more people were, too. Were more and more people contented to live without the mental health system, it might actually be a mental health system.
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I think this is a pretty good and thoughtful article, particularly as it comes from someone who helps run a state “mental health” system. But I am going to say something that will be considered politically incorrect.
I have seen in my personal life that often I can be more helpful and supportive to my friends who are psychiatric survivors, as I am. But I have also seen, quite often, that many of the survivors in our movement are very unwelcoming and even vicious to other survivors.
And in agencies too, I have seen that so-called peers, as the author observes, have not only acted as agents of the system as it is now, but have lorded it over their brothers and sisters, treating them even worse than standard issue “mental health” workers.
Yes, I agree that everything else being equal, survivors may be more helpful than people who are right now very bogged down by their problems. But everything else ISN’T equal, and it hasn’t been my experience that consumer/survivors are any more helpful than any other group. There are many survivors who are among the most nasty people I know.
And I have known actual psychiatrists, a very few, who are among the most decent, helpful, empathetic people I have ever known.
But as someone who spent my entire childhood being tortured in psychiatric institutions, I say that we should not romanticize the idea that somehow “peers” are at bottom always all that helpful. We are like everyone else, some very nurturing and helpful, others just plain nasty. In other words, we are like all other human beings.
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Truer words were never spoken, Ted!
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And as a peer worker in a state hospital I will have to agree with you. One of the huge problems with many peer workers, as well as most staff in the system, is that they are not aware of their own issues. They don’t do enough self-reflection nor do they pursue help in finding out what makes them tick and why they believe the way they do and do the things they do.
Anyone working with people in emotional and psychological distress needs to be aware of their own “stuff” and should have done their own “Work” long before stepping into any position where they’re dealing with anyone who experiences issues. One of my mother’s favorite sayings was that the road to Hell is paved with good intentions. I think it applies to peer workers.
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Stephen: I like your comment but the same problem exists among psychiatrists who are not self reflective and are not aware of their own issues. But the difference between psychiatrists and peer workers is enormous because psychiatrists wield more power to harm. So, I would reserve this judgement for psychiatrists who harm with their labels and forced medication and involuntary treatment orders and not peer workers who, at worst, are only carrying out the lousy orders they have been given and have to operate in tight parameters. The only peer workers I had any contact with were compassionate, wonderful people at Oregon State Hospital. The peer worker’s only fault was that they wielded very little power and their opinions carried very little weight. They get to hand out the ‘milk and cookies’ of the system like outdoor passes and barbecues. This had nothing to do with good intentions and everything to do with how little power they were given by the system to control the outcomes of other peers of those whose cases they are involved with. I dread that peer workers are being used to force people to comply with their meds. What a terrible travesty. Also, there are no peer workers strategically hired in places frequented by people who need the most peer support such as jails, soup kitchens, homeless shelters, etc. They are primarily found in the medical pipeline such as acute care facilities, community mental health agencies and state hospitals where they are at higher risk of being used to convey the medical propoganda.
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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.
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I agree totally about psychiatrists. I wasn’t leaving them out of my statement but should have been more clear that they are one of the worst groups of all among staff for not having done any reflection on their own issues. They are the people who seem to have done the least in looking into themselves and their motives for why they do the things they do.
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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.
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“The doctors here are more crazy than their patients.” by a fellow inmate in a psych ward. I couldn’t agree more. There were some pretty crazy people down there with dementia and hallucinations but nothing like the bunch that was “treating” us.
Btw, I can’t forget one elderly lady who was very talkative to the point of being annoying but also really friendly and caring. Until she got her pills after which she didn’t really talk anymore…
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“I wished I had a stealth video camera, even if it was to record the conversation.”
Oh I wish I had a camera with me every time I had to interact with these abusers. I would sue the shit out of them but like this it’s just paranoid ramblings of a crazy person.
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Stephen, you said a lot. Anyone can be harmful if s/he has not dealt with his/her personal issues to the point where s/he can distinguish between what FEELS GOOD to do (the psychiatrist feels better because the client is now in the hospital and can’t kill himself) and what ACTUALLY HELPS THE CLIENT (the client feels worse than before because he was actually trying to solve a problem and felt hopeless, but needed to talk, but now he’s got three more problems to solve and feels brutalized and abused into the bargain.)
Good therapy or help of any kind has to start from a place of humility. One advantage of a person with “lived experience” could be that they already have the experience of being mistreated and so approach the helping relationship with more humility. But it is also possible that the person hasn’t processed the trauma and instead acts it out on the new client in order to push away his/her uncomfortable feelings. I think this happens a lot when a person who feels they were helped by medication encounters a person who doesn’t find medication helpful. And of course, the staff pressures them to adopt the “conventional wisdom” and supports them in invalidating their client’s concerns.
There is nothing magical about a “peer” providing the service. The problem is one of empowerment and oppression. As long as the “authority” has the right to tell people what is wrong with them and what they have to do to fix it, the authority will be in a position to abuse, whether s/he is a “peer” or not.
—— Steve
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It’s all in the difference between TELLING people what they have to do and SUGGESTING possible ways of dealing with the problem and ASKING what this person thinks about these suggestions.
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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.
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“I’m not even sure suggesting is the best idea.”
Depends. Sometimes I just want to talk and be heard. Sometimes I want someone to discuss a problem with me and maybe suggest solutions I have not thought about.
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Thank you for this.
I worked for and received support from a peer-run organization for several years. People there were cruel and abuse to each other. People (myself included) were regularly screamed at, threatened, and harassed. Through and through, an unhealthy environment.
I have been “in the system” for some 20 years and have experienced my share of abuse there, but this was without a doubt a far worse experience. And it feels to me to be made worse by the idea that “peer is best.” I feel something of a betrayal.
So, yes, peers at bottom are not always all that helpful.
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Speak that truth, Ted. We need to take a deep and genuinely curious look at the personal, relational, and environmental contributors to peer-on-peer abuse and oppression. The first step is to point it out as you have. What makes us turn our power for support and healing into clubs of sanism?
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That is 100% true. Unfortunately it’s kind of hard (?) to measure empathy and willingness to help people as a work requirement in a reliable way.
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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.
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I think this is a very important dialogue. Now that I am in a good recovery place I can add my thoughts for what they are worth. I was in a state based peer certification training and found it to be interesting. They used the recovery model but had both those with addiction issues, those with mental health issues, and some folks had both issues to contend with . All were in some form of recovery. The county was not able to procure a same county based addiction group training leader. The other leader was NAMI based. They both did a good job and I found the model curriculum fairly well done surprisingly so. I was the only one there and the only who had been a professional on the other side to challenge the med based recovery thematic. The addiction folks didn’t seem to be on meds and the mental health folks seemed to be mostly happily on meds. Most folks were supportive of my experience and view points. This was in direct opposition to my experience with the local NAMI office. There were discussions on side effects but most folks were unaware of this site and the whole history of American psychiatry and the divergent path it took after the publication of the DSMIII. They had no idea and I got the feeling this is what the powers that be in my state wanted it to be.And many seemed okay with that limited understanding. My downfall was talking about the use of medication of purely behavior control on pediatric cases. A big no no and ultimately I think lead to all the obstacles I encountered after with trying to follow through with the state peer certification and peer empowerment board.
We do have peer staff in my state some who were at the training, but they seemed vastly underpaid and seem to be badly misused by other mental health professionals.Though I kept silent at the time I was shocked and outraged with the type and kinds of interventions they were asked to perform on an average basis. I found those who worked as peer counselors were for the most part kind, intelligent and open to alternative paths. A peer counselor job should not involve ethical pain on the workers part.
There used to be a team approach to medical care where different professionals would work with the doc and nursing staff in that mode of service a peer counselor could be a godsend for the team and for the patient being cared for. Now the roles have either been dismissed or dropped and the psychiatrists and therapists and nursing staff are all independent agents orbiting the patient on their own. One could wonder if this has been a deliberate strategy by the administration to keep staff in line and incommunicado
What I would like to see is more and more professional and peer dialogue about this topic.
Peer run agenciesneed to be established in all states and run independent of the state and NAMI.
Those of us in recovery need to address the psychiatric community in medical grand rounds and in different professional organizational meetings.
The big sleeping elephant in the psychiatric arena is that many professionals are peers or parents or siblings of our world.
Back when Emma Lazarus of the Statue of Liberty poem fame (bring me your tired ect….) was dying of cancer. Those with cancer were not allowed to be admitted to hospitals. If now cancer is an ( (for me at times) enviable medical crisis maybe it is not out of the reach of reality that mental illness , altered reality states whatever can be treated and supported in the same as cancer is now.
Rising to the occasion can be hard when one is righteously angry but honey always works best instead of salt.
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I had a similar experience albeit in the late 1970’s and in a different context: the education system. We were pioneering peer support for teens in high schools. Our premise was based on observations and research that teens who are experiencing some worry, frustration, trouble, or difficulty often turn to their peers for help.
When we interviewed those teens who were sought after by others for help, we found that they typically didn’t know what to do and felt helpless to assist their friends. They didn’t realize that just being there and listening was a form of help.
Our goal was to recruit these natural helpers and build on their natural skills to reinforce them and at the same time increase their repertoire of options (including learning about referral sources). Lo and behold teens were very eager to get involved in this new type of helping, which at the time we (rightly or wrongly) called “peer counselling.”
While we thought this might be a great way to supplement the services of professionals by increasing referrals, prevention, and best use of professional time, we weren’t prepared for the onslaught of resistance from the professionals as well as the teachers in the schools.
Their main concerns were around, “kids can’t do this kind of thing; they have neither the skills or maturity to help their friends.” Parents on the other hand took to it right away because they were convinced that such peer interaction would increase the chances of their son or daughter being with people who could offer Positive Peer Support as compared to the dreaded negative peer pressure.
At the same time we heard from some social psychologists and sociologists who recognized that there is a natural helping network and that the majority of help provided in the country really comes from peers and family (and clergy). While they recognized this type of natural help, they expressed worry that the training we would provide students (to become peer counsellors) would deplete or interfere their repertoire of natural helping skills, thus reducing what had previously been a valuable source of help for the peer network.
This turned out to be an important factor in subsequent peer programs that started to develop. Although they were often based on our natural helping skills model, they often added in other elements that did change dramatically the way students who were natural helpers would respond. We had no control over this, and such programs reported that the interactions they had hoped would happen didn’t materialize. Part of the problem was that the students were being turned into robots who used canned scripts or phrases right out of the professional counselling textbooks.
In addition, some school-based peer programs made a big deal about making sure that student peer counsellors had “office time,” where they would sit in an office with a sign out in front that said “Peer Counselling is Available.” This was a mistake and an example of a misunderstanding of how help in a peer network is delivered and sought. After awhile many of these programs were abandoned because so few students “used” the office hour service.
The upshot of this is that many professionals who at least thought these programs were good ideas, messed up their implementation or co-opted their purpose and context to conform more to their own sense of professionalism. We called this the “professionalization” of peer work.
This problem still exists today, and it has emerged in the peer recovery movement. Professionals need to learn how best use peer models. Not because of the possible cost savings (that’s not a valid or even accurate portrayal), but because of the way peers can reach into a community and provide help that’s needed to their peers. Peer models are not an add-on or bonus, they are a necessity.
As a final note, most of the initial objections are problems in implementing school-based peer programs were overcome, reduced, or eliminated. This primarily came about by finding common ground and purpose, educating professionals, and providing a way for professionals and peers to work together for the benefit of both. This approach was so successful that it’s unlikely to find a school, college, or university that doesn’t have some type of peer-led program to assist students.
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When peer support workers become peer pressure workers….. its a problem….
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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?
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Seventhsense
This is one of the best and most important contributions in this conversation. You point out very valid concerns and ask the really important questions.
One of the greatest difficulties I run into as a peer worker in a state hospital is that I cannot discuss the problems with the toxic drugs with the people who are forced to take them. I believe it’s the rare individual who takes the drugs who ever makes it back into a real life that is fulfilling and life-giving. The drugs stymie any real progress that people might make and continue to make things worse over the long run. But I’m never allowed to state these things for fear of losing the job that I have. The psychiatrists and psychologists continue to parrot the lies about the drugs, even though Insel himself at NIMH called them into question last summer in August in his blog. It’s a travesty and people are being harmed each and every day by all of this.
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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.
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seventhsense
Google Thomas Insel blog. There is a link to his entries for 2013. The one I refer to is the one from August 28.
The workshop sounds really interesting. I’m wondering how it might be used with group work in a hospital setting. Could you tell me more about how you went about doing things?
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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.
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Thanks for sharing this, seventhsense. Appreciate the workshop you describe. So fundamental in my view.
An integral part of ‘exploring each others’ worldview’ after opressive&abusive upbringing/relations; as well as emotional and cultural/spiritual resources, often hidden behind the veil of traumatic ruptures and their heart/trust/being in the social world-shattering consequences.
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Please continue this wonderfully informative comments discussion.
For several years now, I keep learning, doing, reflecting on survivor/peer support.
Agree wholeheartedly on improving peer education and mutual learning programs. In my view the history of the survivor movement/s and development as well as ‘best practices’ examples of peer run alternatives are shamefully underrepresented to absent from many educational peer support worker education programs.
It was my experience also that I did all my learning, emotional and reflective integration of traumatic experiences and their ghostly/implicit consequences only after my peer education through independent trauma survivor trainers. Nothing concerning the many forms and consequences of long term oppressive and abusive relations was never mentioned or shared in my peer education – as it had never been approached in all diverse psych-professional settings I have been in. I doubt the honesty and humbleness combined with empowerment can be achieved by peer support workers without education abvout and the respectful sharing of trauma-to-healing processes.
The levels and complexities of victimization as a once known ‘normality’ leading to severe emotional, mental, symbolic, embodied distress must be adressed in the richness of symbols, visions, voices, spaces interrupted, ghostlyness… the many ways to suffer the consequences of enduring abuse… as well as the healing and learning initiated by other survivors stories and embodied wisdom of healing. For me this is crucial for my capacity and human quality in ‘deep listening’ and being an active witness in learning with and respecting other distressed ones.
My gratitude for the work of Shery Mead is endless. In her trauma informed Intentional Peer Support I found the core values, healing, respectful and empowering processes for mutual learning in our real social and cultural realities. I also found the much needed clarity in the rejection of the psychiatric language as alienating, distorting and betraying people’s biographies, social cultures and experiences of severe emotional distress and mental breakthoughs etc.
Why are the values and procedures of IPS with the honesty and humble humane power of Shery Mead not necessary in every peer support education program – is my big question ?
Perhaps this is so to brain- and heart-wash peer workers in the ideology of individualistic, ‘unidirectional’ peer work as helpers and role models? Low paid but eager to bring – what ‘lived experience’? in which ‘recovery’ frameworks? – into a psychiatric system that easily adopts a masquerade of disempowered peer workers.
I disagree with narrow, just ‘experience based’ peer support education that produces cheap and vulnerable ‘peer specialits’… or, words can be like cats who bite their own tails, ‘experts by experience’ – after often less than 14 days of most basic training – with no critical reflection or any historical and sociological discussions about ‘psychiatric institutionalization’?!
Improvement of peer support work education and training as well as ‘professional networking’ with mutuality based peer support initiatives I see as essential to provide and sustain ‘high human quality’ peer support. I know of wonderful peer run projects both in the US and the UK, none of them being presented in the curriculum of most peer education programs. The liberating Maastricht Approach for voice hearers and people with unusual beliefs is equally missing in most peer training programmes. Do people really want well informed and high quality peer workers, that begs a question, at least in my mind and heart.
How the existing psychiatric institutions and staff need to change for meaningful, integer and mutuality-empowered peer support to take place within ‘mental health services’ merits much more discussion and critical attention than is yet given.
A recent study by a team of survivor/user researchers and engaged academics explores some of these issues in ten different agencies in the UK:
Gillard, Steve et al (2014) free download
New ways of working in mental health services: a qualitative, comparative case study assessing and informing the emergence of new peer worker roles in mental health services in England
http://www.journalslibrary.nihr.ac.uk/__data/assets/pdf_file/0016/121219/FullReport-hsdr02190.pdf
Closing with a quote from an inspiring, well informed and empowering article by Sandy Watson of Inside Out & Associates Australia (2013) on Peer Workforce Development
‘The values of peer work are fundamentally different to that of the mental health workforce, especially around the concepts of equality, mutuality and reciprocity.’
‘For consumer and peer work to be positioned as part of the mental health workforce is directly antithetical to the work itself: its social and political histories, its critical analysis, literature, research, values and practices. It is the differences that need to be upheld for consumer and peer work to maintain its integrity as a workforce in integrated mental health service settings.’
‘An important point I want to clarify is that my argument is not an argument for separatism, for the complete separation on mental health service teams of consumer and peer workers from non-peer workers. Rather, it is an argument against same-ism and the notion that we are the same as non-peer workers. We weren’t employed on the basis of sameness: our rights in the workplace are different in Commonwealth law, and the services we provide differ in fundamental ways.’
Excellent paper by Sandy Watson of Inside Out & Associates Australia from her key note address at the Australian Peer Conference 2013
Free download of paper:
http://www.peersupportvic.org/images/stories/CEPS_Keynote_SWATSON-2013.pdf
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I have participated in a peer specialist training, “recognized” by the state but provided by a peer organization. It was 17 days total, and did actually talk a lot about the history of psychiatric institutionalization and theories around systemic trauma, as well as the history of the peer movement. This was talked about mostly in the abstract, and it was much insinuated that we all had faced that systemic trauma, that this was our shared experience. The training, on the other hand, talked little about other experiences of trauma and the impact they may have on someone.
(On a side note, the class was oddly split between those in their young twenties and those forty and older, with a few people – myself included – in between. The training presumed that we all had this same shared history within the system, when in fact the experiences of the older folks and younger folks were quite different. A few of the younger folks admitted to feeling slighted because they felt their system experience was not acknowledged, as if they were not really “survivors” because they had not experienced xyz.)
I have participated in several professional development sessions on “trauma-informed peer support. One was a two-day workshop by someone who is considered somewhat of an expert in the area. These were great at defining what trauma might look like, in the widest way possible, and what long term impact they may have on the individual. None provided a way to work with individuals that respected this trauma experience.
And I have participated in the 5 day Intentional Peer Support introductory training. Wow! It was 5 days of hands-on practice for providing support from a mutual standpoint. A truly revolutionary way for not only providing peer support, but for moving through life. If I could change anything, I would add a day or two at the beginning where only competences and values are discussed before the role playing is commenced – simply because that would best reflect my learning style.
I agree that it would be a beautiful thing to see the values of IPS infused in peer support work universally. Clearly it is not about the amount of time given towards learning material that maters, rather the content of the material and the manner it is presented. Histories and philosophies are great, but role playing and other types of hands-on practice is essential. And the fact the IPS is really a methodology for life, i.e. not something I leave at the door when I go home from my peer job, is what makes it really work I think.
In my IPS training class, the vast majority had been through the same peer specialist training as I had. Some of the IPS class members were actually CPS trainers. On the surface, this would appear wonderful – I would hope they would infuse IPS values into the CPS training. Sadly several of these classmates said throughout that IPS was just another methodology they were learning, something to choose from the menu at will, or that it conflicted with the way peer support was done in their job/agency. More sadly, one of the CPS trainers made clear from the beginning that she was there because she was being paid to attend, but had no intention of changing how she practiced because she already knew it all. Sigh.
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Beautifully written JM: ‘And I have participated in the 5 day Intentional Peer Support introductory training. Wow! It was 5 days of hands-on practice for providing support from a mutual standpoint. A truly revolutionary way for not only providing peer support, but for moving through life.’
Yes, an integer understanding of the ingredients in ‘living mutuality’ is life changing – most needed for all people subdued and victimized, the very breathing basis of healing and empowerment. I am sometimes anry that many ‘professionals’ seem to ignore this, wether peers of psy’s.
Mutuality and respect of the other person’s ‘becoming’/cultural life story to be grateful to learn and share is so humble, sometimes full of all colours of humor, and empowering, mutually, exactly.
These values and processes, as practised in IPS, don’t constitute yet another dish from a chinese menu for recovery. They’re crucial for restoration of hope, trust, belief, interpersonal and self-other-respect, as well as for socially engaged agency.
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Thanks for these comments! I am glad to hear of other training experiences. How does one start a peer support system? My state has only state sponsored or NAMI sponsored projects. I would love to have a more alternative peer supportive network.
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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.
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seventhsense, I’m very interested in learning more about IPS (and I do understand the concerns you listed). Which manual did you purchase and read? The Intentional Peer Support: An Alternative Approach or the Intentional Peer Support Core Materials (For Certified Facilitators Only)?
Thank you for all your informed commentary. I greatly enjoyed hearing the many views presented here over the last five days. It’s been affirming and has also given me things to think about and investigate further.
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@seventhsense,
Appreciate you point out wether the personal response by the intentionally relationship of trust ‘initiator’ may be intrusive and forcloses the sharing of the other peer’s issues and feelings. I remember I had very similar worries in reading some of the ‘active response’ examples in the IPS training manual.
However, I refered to my practical experience and put the exchange into a lived situation of sharing and relating. Filling it with embodied and felt presence situates the answer to as a ‘nuanced gesture’ of building a real dialogical space of sharing in a relationship. I
In my view the attitude of real respect of people’s difficult as well as resourceful life-‘stories’ shapes the responsive giving as a not intrusive and dominating one, seen in the lived processes of letting mutuality establish itself in a relationship. This needs, my opinion, an inner stance of always being humble, not judgemental (emotionally) or knowing (supposedly from lived experience). And this stance is actively lived in the IPSupporter sustaining inner spaces where to put one’s own emotions and sudden ideas, let them rest there, and stay present with much inner as well as outer relational space of listening.
Hoping that my words can transport stg of this lived dialogical listening, processing, reflection (’emotive’ and ‘spiritual’) and reply within a reciprocal relationship to ‘become’.
About the ‘friend’ concept. I doubt it can be ‘im-posed’. Keeping in mind the many nuances in a mutual and personal relating ‘to and between’ one another, it may rather be an attitude of respect, humbleness, acceptance of the deep realities of the other and ‘honesty’ towards oneself. The latter much relates to the processing and reflecting of one’s own emotional responses to not be allowed to ‘take a lead’. I decribed this by the inner space and time to situate and process one’s own ‘reactive issues’ whilst staying open and present with to other/s.
This may sound as a cliché but invite trust for a relating process to develop seems important. Discussing that no one knows about what is rigt, best for the other, and what ideas each may have about ‘power’ of an intentional peer supporter seems crucial to me.
We are so used of functional ‘relationships’ shaped in super-/subordinate roles that it is a wortwile issue where all have the chance to reflect and dialogue about their experience and (implicit) expectations of ‘how response-ability’ happens to be created.
I found it helpful to ask myself: how do I feel and behave if a friend shares some unresolved issue; how do I feel and situate myself in a mutuality relationship. This is were the concept of, what is in a friend as listener and responder, prooves helpful for me.
Also, I remember, Shery Mead writes that IPS is not exactly like friendship… so this is a worthy issue of exploration and reflection and learning in inviting and sustaining mutuality and reciprocity in peer support relationships.
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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.
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@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.
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seventhsense –
I can understand your concern about the person being heard getting waylaid by the listener, and want to ask you to think of this…
If I am relating a difficult experience to someone and it is too much for them, mentally they are going to disengage from the conversation. No words are needed – I can easily tell they are no longer listening by their body language. I have had this happen with peer supporters as well as with clinicians. No blame for them, it is just their body’s unconscious way of dealing with something that is uncomfortable for them.
In IPS, we learn to pause and speak up when something is too much for us. This stops that shut off mechanism. Then, in a moment or two, we can get back to where we are. This may seem intrusive to the conversation, and it can be, but it is effective in keeping both people engaged in the conversation.
It is naive to think that any type of supporter – peer or clinician – will never been impacted by what someone else is sharing with them, no matter how good their listening skills are. IPS acknowledges this, and provides skills beyond listening. Mutuality is about relationship. It is not a mutual relationship if one person’s job is simply to listen without sharing how they are impacted. That is a clinical relationship.
I am not sure about the “friends” part. The workbook I have and the training I went through was explicit that being a peer supporter is not being a “paid friend” (though IPS skills are certainly useful in any friendship or relationship). It is possible you have an earlier copy of the workbook?
In any case, I would really encourage the IPS training for any peer supporter. Going through the training is very different than just reading the workbook (I had the manual ahead of my training, and was surprised by how my interpretation differed from what we learned). As I stated earlier, I have been through a “standard” peer specialist training. I have also been through three other in-depth peer support trainings, and many many shorter ones. IPS is the only “whole package” model that tries hard to avoid that “mini-me” role.
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Thanks JM,
Very important to hint at the vital importance of the lived dialogical experience in a peer support relationship. The emotional and emodied dynamics of mutuality are wider and deeper and ave more ‘space for play’ than linear writing easily captures.
I agree with you emphasizing the basic difference between a mutual and a clinical relationsip. Nevertheless how to do active listening if one is the paid provider in mutual support is a central issue. In my view, it is important to sit with not knowing and giving soulful, attentive, respective, embodied listening space for the other to bring up her issues and orient herself in respect and trust ‘offered’.
When the relationship becomes trusting and ‘fuller’ as well as more ‘natural’, and I appreciate you mentioning the qualities of embodied being there, than sharing from one’s feelings and experiences, being processed and at disposition of others, actually provides the vital nurturing of mutuality.
I always found it strange that psychoanalysis pretends that the empty mirror of disengaged listening would be ideal for the ‘analysand’. I think we have learned for a century of diverse ‘healing’ relationships that there is a ‘dance’ of give and take in them. One person staying hidden behind a veil of silece is not the solution, may be appropriate in moments, but not as a principle.
I think the clinical silence creates some kinda myth of unshareable expert knowledge whereas mutual peer support is about getting real in an evolving learning relationship where both have opportunities to give and take, to learn through sharing and exploring real lived issues and acknowledge their social and cultural habits and contexts, not just focus on individual psychological processes in an artificial clinical setting.
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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.
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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.
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Thank you for all the comments regarding Intentional Peer Support. I am networked with many health-related, self-help groups in our community, and am slowly introducing this website and the ISP website to people here locally as I continue to read and learn. It really resonates with my experiences. Hoping it does with them too.
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I did a workshop yesterday at NARPA on Trauma-Informed Peer Support in Traditional Provider Agencies. Brief description: “There has been a recent, rapid expansion of “peer support specialist” positions within traditional mental health programs. These jobs are usually designed by professionals who are unfamiliar with the principles and practices of peer support. Research shows that this often places “peer” staff in untenable workplace situations and impedes clients’ access to genuine peer support services. This workshop will provide concrete examples of how administrators, managers, supervisors and non-peer colleagues can facilitate the successful integration of trauma-informed peer support into their agencies’ service offerings.”
Tthis is a difficult question with no easy answers.More than 20 years ago, my staff and I at NY State Office of MentalHealth created the country’s 1st civil service job title for “peer specilaists.” For many reasons,I feel that was a mistake. The role was not understood by managers and clinicians, “peer” saff were often badly mistreated and made to do things that violated peer support values. I wish we had never created this job title, but that train has long ago left the station. It’s important to try to fix the way “peer”staff are used. It would be much better if all such peer support servcies could be delivered through peer-run organizations instead of within the system.
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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.
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Yeah, I don’t see how it could be more clear that so-called “peer support” when funded by the mental illness industry can be little more than an oxymoron.
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Personally I’d never be able to trust any peer worker who works within the system. I’d never trust anyone who works within the system.
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Having read Larry Davidson’s papers for some time, I came to be curious about the honesty of his promotion and research into what people with experience of altered qualities of worldliness and their/our social and cultural, mostly repressive and abusive, life stories could most uniquely bring to radically change mental (and I wish emotional and culturally sensitive) mental health services.
Today I discovered a talk Larry Davidson gave in 2013 which pretty much covers the whole challenge as formulated through his research and practice. No need to say that I do not share is ideas’ of ‘mental illness’. What I certainly do share is the deep engagement in how people with altered ways to expirience being in the world can transform support and care to be more fully humane.
Here is the link to Larry Davidson’s 2013 presentation
Larry Davidson – free public lecture at Melbourne University 1st July 2013
The contribution to mental health reform by people who have experienced mental health challenges. https://www.youtube.com/watch?v=38ImiRBx_MM
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Wish to add my stance on psychiatric diagnoses and mental illness, to clarify my difference from Larry Davidson’s view on how much ‘psychiatric treatment’ is being needed.
On the ‘consumers’ choice of having a mental illness and being in need of psychiatric treatment – it is all done with smoke and mirrors, double think, alienation and coercion.
What I wish to highlight is the unfairness of presenting the state of affairs as being one where the person with changed perceptions and energies had any choice of how to interprete them. In the general culture the knowledge of how oppressive, abusive relations disrupt and distort one’s bodily, emotional being in the social and socialized values world, the turning ghostly of the self and others, the interference of many troubling perceptions, are not available.
(One may no longer wonder why, as we all shall believe that we just individually need thrive for happyness, power abuse all over the westernized ‘free world’, nay, go ‘consumer’, and the poor shall watch ‘Keeping up with the Kardishians’. If they are not going mad, damned, shut them the f/p.)
The first framing people in distress, altered ways to experience themselves and the world, are exposed to nearly always is the one of biopsychiatric mental illness diagnosis, prognosis and drugging with neuroleptics. There is scientific and legal power given to this false and harmful knowledge from manipulated, ‘evidence based’ drug trials and neurochemical interpretations, diagnostic ‘fables’ voted by psychiatric guilds in hidden meetings, re-injected in the technical science fiction of studies designed by people with no experience of altered affective&mental realities (apart from falling in love, the terror of being in a car accident, loosing a child and one’s soul with it, etc., which should be enough to forget about ‘normatized daily functioning’ of white middle class men, bureaucrats and consultants only, as sole standard of human experience and habits).
The legalized and scientized powers behind the psychiatric diagnoses and treatment are the medical institutions and representatives a person in some extreme condition, thus confused or agitated, encounters as ‘expert helpers’. The person being ‘naive’ and in a ‘confused’ state, meets up with the doctors trusting their ‘expertise’. She has no idea of the falseness of the whole ‘enterprise’ and thus many ‘patients’ first believe that they really have a mental illness (‘broken brain’, ‘chemical imbalance’). So people in distress or agitation are lied to and given harmful treatments, followed by psychoeducation on how to be a schizophrenic or bipolar patient for the rest of their lifes in self-surveillance of mental illness prodrome or symptoms.
This is actually most similar to early modern times ‘witchhunts’ and other inquisition, most similar alliances of governing power elites, institutions, norms, legislation and ‘treatment’, persecution, harm, terror, even murder. But under the guise of science fiction and neuromythology the neophyte is made to trust and believe the medical and legal experts. Therefore it is not about the person in extreme agitation or confusion or the impact of unusual beliefs having any choice.
It is about exposing the criminality of the psychiatric diagnoses and mal-treatment system. About exposing that biopsychiatry defines and executes modern witchhunt, terror and ‘soulmurder’. Only if this is done for the general public, would it be correct to state that people becoming confused, agitated, experiencing distorted selves and altered realities have a choice to believe:
– wether they struggle with the embodied, affective and mental consequences of abuse, repression, exclusion, social abjection or
– they believe to have a ‘broken brain’ or other mental disease/disorder/illness, with no unique/specific neuro-hormonal processes or bio-markers to qualify any.
For the time being it is highly unfair to talk as if the ‘neophyte in psychiatry’ had any choice what to believe. And those of us who have been in the psychiatric system know what happens if one protests and resists their diagnoses and other assessments, alarmed by the negation and distorsion of ones’ experiences. Coercion, forced treatment, ‘legal guardian’, never ending re-definition of ones’ thoughts, feelings, beliefs in the most brutal and harmful ways as symptoms of mental illness. Vicious circle of power abuse. It is like inquisition and witchhunt and needs be exposed as the same brutal institutionalized, legalized and, nowadays, pseudo-scientized terror.
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Ute, thanks so much for the link to Dr. Davidson’s lecture in Melbourne last year. It was definitely time well spent. There was a time when I had to travel to hear lectures like this, or purchase the recording. Now I can listen in for free. Will listen in one more time but this time take notes.
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Thank you, Winifred, for your kind words. Totally get you-tube 😉 A tresor of inspiring and informative lectures and keynotes ‘out there’.
Here is a link to a presentation by a user researcher about peer support in mental health agencies. Excellent user led study. Important difference when research is conducted from the standpoint of an ‘expert by lived and work experiences’ in PSW.
Peer support in mental health: an exploratory study of PHaMs in Victoria (2013)
https://www.youtube.com/watch?v=YIqcGdreyPE
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Just hope I did not mix up the user researcher identity of the above posted link to Emma Gale’s talk on user involvement (watched last year)
with the excellent PhD thesis by Louise Byrne (2014) “A grounded theory study of lived experience mental health practitioners within the wider workforce” http://profiles.cqu.edu.au/profiles/view/154
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The addictions field is mostly run by peers and Alcoholics Anonymous is totally peer run.
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If they can do it, so can the rest of the system. Meant to add that.
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RE: From such a perspective, persons in recovery who occupy provider positions in conventional mental health programs are seen as committing a kind of betrayal.
I see betrayal when ‘consumers’ work for NAMI helping it’s mission remove more patient rights.
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Our organization is, I believe, the largest employer of peer support workers in Connecticut. We have a slightly different take on how mental health agencies can become truly recovery oriented as well as supportive of the growth and creativity of staff members who disclose and use their recovery experiences in their work. We think that the key to change is for an agency to employ large numbers of people in recovery so that their experience is no longer seen as other, but simply as ordinary. (We are the employers of the peer worker and place them in agencies that pay us an hourly rate for their time.) One agency that has invited large numbers of our peer staff into it over the last 5 years, has seen the amount of stigma drastically diminish. Peer staff speak up regularly in meetings and talk about the relevance of their experience to the work being done now. Our training includes a 6 week internship at an agency together with weekly meeting to digest what the interns have seen and the recovery support they have begun to offer.
Our other central principle is patience. Recovery is not a half-hour TV drama. It takes a lot of relationship to see change in someone who is struggling to find a way to lead a fuller life. We focus a lot on self-care and the avoidance of burnout. We have frequently peer meetings for mutual support and thinking together about problems.
Does it always work? Of course not. Peer support is hard work and not everybody can do it. Service users have the same emotional limitations as all other humans, and sometimes decide that the struggle is too difficult. We are always trying to learn from others’ efforts whether they agree with us or not.
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There are some differences between AA being entirely peer run and an entire “mental health” system being peer run because that requires an awful lot more to offer something like Parachute NYC, Soteria’s etc in every single town and city, that’s a lot to build which takes money, buildings and time. There’s also the thorny issue of housing & welfare. In the UK welfare requires diagnosis therefore professional ‘validation’, whether we like or not that’s how it is. Psychiatry doesn’t exist in vacuum, other systems such as welfare require diagnosis and I’m including people in work which is part-time, self-employed, low paid, where they wouldn’t survive without the back up of a disability component tax credit or allowance and social housing.
I’ve listened to support workers refer to failure to attend groups meaning loss of housing – housing and basic income to live should never be made contingent on participating in some form of intervention whether that’s medical or ‘recovery’ orientated. Peers workers being forced to impose recovery outcome tools such as the Recovery Star is not on, neither is it acceptable for ‘peer’ job descriptions to be mini psych professionals or be required to “maintain their personal wellness” and have a ‘recovery story’ to reel off at the drop of a hat. When peer workers are required to impose mainstream recovery interventions and measures that’s no better than being co-opted into a medical model of mental health.
Real freedom is to not have to subscribe to any ‘model’ or philosophy if you don’t want to, but social justice needs to be at the heart of all support because that impacts on the majority.
http://criticalmhnursing.org/2015/10/19/the-recovery-star-meets-the-unrecovery-star/
Peer support within state run services is likely to remain less well paid or voluntary to tick the ‘co-production’ box but I think we need people working both inside and outside of the system
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These are NHS funded services, one is survivor-led:
http://www.madinamerica.com/2015/10/id-rather-die-than-go-back-to-hospital-why-we-need-a-non-medical-crisis-house-in-every-town/
http://www.lslcs.org.uk/
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