Who Gets to Define “Peer Support?”

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The definition of “peer support” should be straightforward. A “peer” is an equal, someone with whom one shares demographic or social similarities. “Support” expresses the kind of deeply felt empathy, encouragement, and assistance that people with shared experiences can offer one another within reciprocal relationships.

But, as I found while writing a grant proposal to study peer support, preparing a literature review on this topic is complicated by the fact that there is no standard definition. Terms like “peer support,” “peer-delivered services,” “consumer services,” “peer specialists,” and “peer workers” are used interchangeably in the literature, making it difficult to draw meaningful distinctions among practices that are fundamentally different.

To make sense of this, I created two categories to differentiate the terms that were conflated in the research literature. One I called peer-developed peer support, and the other the peer staff model. Definitions of the two categories are offered below.

It became clear that most of the research literature I located using the search term “peer support” was not about peer support as people who practice it understand the idea. Instead, it was about the peer staff model, which rarely includes genuine peer support practices. Over the years, “peer support” seems to have morphed into “peer specialist” — or, to put it more bluntly, psychiatric survivors’ experiential knowledge has been co-opted by the system. What can we do about this?

Peer-developed Peer Support

Peer-developed peer support is a non-hierarchical approach with origins in informal self-help and consciousness-raising groups organized in the 1970s by people in the ex-patients’ movement. It arose in reaction to negative experiences with mental health treatment and dissatisfaction with the limits of the mental patient role.12 Peer support among people with psychiatric histories is closely intertwined with experiences of powerlessness within the mental health system and with activism promoting human rights and alternatives to the medical model.3

Peer support was influenced by the human and civil rights movements of African Americans, women, and lesbians and gay men in the 1960s and ’70s, and by the Independent Living (IL) movement of people with physical, sensory, and cognitive disabilities.4 The IL movement sees “disability” as the result of physical, attitudinal, and social barriers, rather than the consequences of deficits within individuals with impairments.5 While peer support has political roots, it is also an interpersonal process with the goal of promoting healing and growth in the context of community.6

Peer Staff Model

The growth of the peer staff model is illustrated by the recent, rapid expansion in the U.S. of “peer specialists” and similar positions in mental health programs.7 While there is no standard definition, many states, provider organizations, and government agencies have developed peer specialist or similar job titles, such as peer mentors, peer support specialists, recovery support specialists, recovery coaches. These job titles apply to employees with psychiatric histories who work in paraprofessional roles in traditional mental health programs.8 Peer workers in traditional programs generally do not offer “peer support,” but provide clinical, ancillary, and/or paraprofessional services that are indistinguishable from those provided by non-peer staff. While peer staff may be providing “clinical” services, they do not have pay equity with actual clinical staff. Relationships between peer staff and service users are usually hierarchical, as opposed to the horizontal relationships of peer-developed peer support, and these workers are seldom exposed to the principles and practices of peer-developed peer support.

How “peer support” morphed into “peer specialist”

Grassroots peer support practices were developed out of necessity by psychiatric survivors. These were then adapted by bureaucrats who did not understand the principles and values of peer support, and modified the idea to create peer staff positions. This is an instructive case study of the co-optation of psychiatric survivor’s experiential knowledge to benefit the system, while leaving intact the system’s coercive structure based on the deprivation of liberty and forced treatment.

In the 1970s, peer support was informal and unstructured. People met in private homes, church basements, and libraries, but rarely in spaces affiliated with the mental health system. During the 1980s and 1990s, independent, peer-run, non-profit organizations emerged. Many of these were supported by government funding and began to offer more structured peer support. With funding came oversight, and soon state mental health authorities defined what was meant by “peer support” in their funding contracts, usually without consulting peer support experts.

During the 1990s, state mental health authorities began creating jobs in traditional programs with titles like “peer specialist.” While these jobs are designed to be filled by people with psychiatric histories, they do not generally provide peer support according to the definition of peer-developed peer support. These staff are often supervised by non-peers — that is, people who are not psychiatric survivors, who do not share the staff’s experiential knowledge.

In 1993, New York became the first state to establish a Peer Specialist civil service title. The position was developed primarily by policy-making staff with psychiatric histories, motivated by the desire to bring the values and principles of grassroots peer support into paid peer staff roles. However, this is not what happened in practice. The peer specialists’ ability to adhere to peer support values was compromised by clinicians and administrators who did not understand or support the principles, including many who actively worked to undermine them.9 I played an active part in this initiative — a role that I now regret.

The expansion of the peer staff model was accelerated when the Centers for Medicare and Medicaid Services (CMS) issued a directive in 2007, clarifying conditions under which peer support services could be reimbursed by Medicaid. The CMS policy letter spurred an increase in peer specialist services paid for with federal Medicaid funding, and conflated “peer support” with the peer staff model, implying that any service provided by a “qualified peer support provider” was, by definition, “peer support.”

The directive defined “peer support services” as “an evidence-based mental health model of care which consists of a qualified peer support provider who assists individuals with their recovery from mental illness and substance use disorders.”10. CMS, Department of Health and Human Services, Baltimore, MD.] How they arrived at this curious definition was not explained. The research literature reflects this confusing and circular characterization. Definitions of “peer support” used in recent major review articles include:

  • Direct service delivered by a person with a serious mental illness to a person with a serious mental disorder11
  • Past or present consumers of mental health services employed as providers of mental health care services12
  • Peers providing ancillary or clinical mental health services in traditional programs13
  • Services provided by a consumer of mental health services14
  • The use of consumers as providers of service and supports15

The expansion of the peer staff model led to peer specialist certification programs in 41 U.S. states as of 2016, most of which require completion of a state-approved training course, using a state-designed curriculum or one of several proprietary training programs. There is no guarantee that these courses are designed by people with experiential knowledge of the mental health system or of peer support. These trainings vary in length, intensity and content, but they generally do not include training on the values and principles of peer-developed peer support.16

In 2017, Mental Health America (MHA) launched a standardized national peer specialist certification through the Florida Certification Board. Among the many problems with this development, as Sera Davidow pointed out in a Mad in America blog post, is that MHA is not a peer-run organization and so does not have the requisite experiential knowledge to create this certification. This certification does not include any actual instruction, requires an expensive online test and bi-annual renewal fees, and the certification exam tends toward the clinical. As Stastny and Brown observed, “It appears that clinical services have come full circle to incorporate peers as providers in interventions that have moved far away from the original transformative role that was envisioned by the empowerment movement.”

Research finds that peer staff feel ostracized and poorly treated by non-peer staff.17 A recent study explicitly found that peer staff working in traditional treatment agencies are “co-opted,” reporting that the employment and supervisory circumstances of peer staff “can reasonably be construed as a powerful force encouraging acculturation into the cultures of the treatment organizations in which they work.”18

What’s Next?

It’s not possible to stop the proliferation of peer specialist-type jobs and peer certification programs; the co-optation of survivor knowledge is complete in this case. I believe that the best we can hope for is to demand that policy-makers and administrators:

  • heed the research suggesting that people in these roles are often mistreated and take steps to improve their working conditions
  • use honest, transparent language when describing the role of people employed in the peer staff model
  • require people in paid peer staff roles — and their non-peer supervisors and program administrators — to receive training in genuine peer support practices, such as Intentional Peer Support (IPS)
  • consult with experts on peer-developed peer support to develop policies and practices that safeguard the integrity of genuine peer support
  • financially support the dissemination of information, resources, and training on peer-developed peer support

Note: The author has written more extensively on this subject in a paper, “Defining ‘Peer Support’: Implications for Policy, Practice, and Research,” available here.

Show 18 footnotes

  1. Van Tosh, L., & del Vecchio, P. (2001). Consumer/Survivor-operated self-help programs: A technical report (Publication No. SMA01-3510). Rockville, MD: Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services.
  2. Kalinowski, C., & Penney, D. (1998). Empowerment and women’s mental health services. In Levin et al. (Eds.), Women’s mental health services: A public health perspective (pp. 127-154). Thousand Oaks, CA: Sage Publications.
  3. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. New York, NY: McGraw-Hill.
  4. Deegan, P. E. (1992). The independent living movement and people with psychiatric disabilities: Taking back control over our own lives. Psychiatric Rehabilitation Journal, 15(3), 3-19.
  5. Penney, D., & Bassman, R. (2004). The Independent Living movement and people with psychiatric disabilities: Searching for common ground. Albany, NY: The Community Consortium. Available at http://community-consortium. org/pdfs/ILC.pdf
  6. Mead, S. (2003). Defining peer support. Available at: http://www.nhcornerbridge.org/Articles/DefiningPeerSupport_Mead.pdf
  7. National Association of State Mental Health Program Directors (NASMHPD) (2012). Fact sheet on promoting peer support services: the SMHA role. Available at: http://www.nasmhpd.org/sites/default/files/Workforce_Fact %20Sheet%20on%20Promoting%20Peer%20Support%20Services.pdf
  8.  Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry, 11(2), 123-128.
  9. Stastny, P., & Brown, C. (2013). Peer specialist: Origins, pitfalls and worldwide dissemination. Vertex, 24(112), 455.
  10. Centers for Medicare and Medicaid Services (CMS) (2007). State Medicaid Directors’ letter #07-011 [guidance to states interested in peer support services under the Medicaid program
  11. Chinman, M., George, P., Dougherty, R. H., Daniels, A. S., Ghose, S. S., Swift, A., & Delphin-Rittmon, M. E. (2014). Peer support services for individuals with serious mental illnesses: assessing the evidence. Psychiatric Services, 65(4), 429-441.
  12. Pitt, V., Lowe, D., Hill, S., Prictor, M., Hetrick, S.E., Ryan, R., & Berends, L. (2013). Consumer-providers of care for adult clients of statutory mental health services. The Cochrane Database of Systematic Reviews, 3.
  13. Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry, 11(2), 123-128.
  14. Rogers, E., Farkas, M., Anthony, W., & Kash, M. (2008). Standards for rating program evaluation, policy, survey, pre-post, or correlational human subjects studies. Boston, MA: Boston University, Center for Psychiatric Rehabilitation. Available at http://www.bu.edu/drrk/files/2011/11/ms-syntheses-rigor-scale.doc.
  15. Davidson, L., Chinman, M., Sells, D., & Rowe, M. (2006). Peer support among adults with serious mental illness: a report from the field. Schizophrenia Bulletin, 32(3), 443-450.
  16. Kaufman, L., Kuhn, W., & Stevens Manser, S. 2016. Peer Specialist Training and Certification Programs: A National Overview. Texas Institute for Excellence in Mental Health, School of Social Work, University of Texas at Austin.
  17. Walker, G., & Bryant, W. (2013). Peer support in adult mental health services: A metasynthesis of qualitative findings. Psychiatric Rehabilitation Journal, 36(1), 28.
  18. Alberta, A., & Ploski, R. (2014). Cooptation of peer support staff: Quantitative evidence. Rehabilitation Process and Outcome, 2014(3), 25-29.

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Darby Penney
Darby Penney is a longtime activist in the human rights movement for people with psychiatric histories. A senior research associate at Advocates for Human Potential, Inc., she is principal investigator of a federally funded study of the effect of Intentional Peer Support on community integration, and co-author of Engaging Women in Trauma-Informed Peer Support: A Guidebook. Darby serves on the boards of the National Association for Rights Protection and Advocacy and the Campaign for Trauma-Informed Policy and Practice.

189 COMMENTS

  1. Your post is titled, Who Gets to Define “Peer Support?”, and this illustrates only part of the problem. Take the much bandied about term “co-optation”. We talk about the corruption of psychiatry and big pHarma, but we don’t do much talking about what this “co-optation” at another level really consists of, and that is the corruption of the psychiatric survivor movement. Where the ex-patient movement becomes an ex-patient “mental health” worker movement a lot of lines are being blurred. I’ve met so many “peers” who have not had the state hospital experience, in the “peer” system, that I see this as a bizarre matter of further expanding the “mental health” system, on top of merely drumming up business for the “mental illness” industry. I’ve ran into a number of, as one should expect, “peer” workers who are going to school and majoring in psychology as well. Obviously, this is a path that is not likely to lead to de-medicalization. Medicalization is expansion of the “mental illness” industry (between the last quotations marks substitute, disability, helping services, service, etc). It’s time to take the movement underground, and in the process of doing so, to oppose this “peer” “mental health” treatment worker thing, and the entire “mental health” movement that helped to engender it.

    “Peer”, given the “peer staff model” that you mention, is on it’s way to becoming specialist jargon. I wouldn’t identify as a “peer” in the first place because I find the term insulting. “Peers’ are “peers” with “ex/patients”, they are not “peers” with any “professional staff”. What we need is “peer certificate” and “psychology degree” toilet paper. I wish somebody would get the idea, and make a novelty item of that sort, and then market it.

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    • I am not actively involved in this struggle in a big way these days. When I was I thought that support services that were named as being run by antipsychiatry organisations would be a good tactic. If peer run orgs said they were providing services because psychiatry was dangerous it would have an impact.

      Some think that the most dangerous thing that the Black Panthers did was to run breakfast programmes for school children. Implicit in that action was the idea that the state is starving black children. They didn’t have to mount protests to show what they meant. This was a big threat to the white government. Perhaps peer support got coopted because it was a threat?

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      • Government money has done more to co-opt the movement than anything else. Financial dependence is one thing, financial dependence on the government another. Financial independence, well, I’m not sure I’d call that working for the government. There’s another interpretation of financial independence, too, and that’s as “mentally healthy” behavior.

        SAMHSA is a government agency, and that’s just one reason I’d have to be leery of it. SAMHSA is where these grants come from for funding alternatives. I don’t tend to look at working for the “mental health” system, that is, the “mental illness” industry, as any more independent than than I do entering the system as a “patient”/prisoner. With a broader interpretation of madness, employing more professional staff, including ex/patients, medicalization tends to increase, and this is not looking at the reasons the government might have for suppressing people through funding (funding and drugs).

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        • It is just the continuation or “creep” that programs like NAMI started in exploiting those with lived experience. I wouldn’t be at all shocked if their hands were dirty. But then I can’t imagine as identifying as “mentally ill” and then becoming re-entrenched in the system that did nothing but harm to me. I think the people who become involved with this actually think they will create change but, soon find out that they won’t. I also think there are many self-proclaimed “survivors”, as you mentioned, that have lived experience consisting of drug compliance and a subservience to out-patient programs and self-help groups. Those devastated by this horrible industry that I know are too debilitated by decades of drugging or have escaped and would never return.

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          • Re-entrenched in the system? Maybe. Mutual support to me means I give and I receive from the interaction. It’s possible that receiving a wage to participate in that interaction poses a conflict of interest. Yet with proper training, I believe peer support offered by an individual with lived experience can provide a unique and critical support unobtainable elsewhere.

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          • Knowing what I know now about psychiatry I could not work for them in good conscience even if they offered me a bigger salary than the psych guy makes. And they don’t. 🙂

            More like minimum wage for going around telling others, “Hello I’m Rachel and I am a severe mental illness–whoops! have a severe mental illness.”

            This prestigious, lucrative post would have me encouraging others to be grateful consumers–obey orders without question even if they kill you–and fight “stigma” by telling the public about their assigned identity as a severe mental illness…carrier.

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    • I’m not sure I understand your comments. My post is indeed about the co-optation of psychiatric survivor knowledge and the psychiatric survivor movement.
      And while it was beyond the scope of this blog, I’m not a fan of the word “peer,” except as an adjective. “Peer support” works for me because it describes Support by one’s equal. But referring to human beings or job titles as “peers” doesn’t work for me.

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      • I tend to think this co-optation is tied up with the corruption of psychiatry through pharmaceutical companies conflict of interest. It’s a system not only corrupt at the top, it’s corrupt from top to bottom.

        Although it would be a stretch to call the checks that come of some of these positions bribes, I’ve heard of a man becoming wealthy operating a “peer specialist” training program. Attaining a fortune training “mental health” treatment workers doesn’t strike me as a very socially “healthy” thing to do. More “mental health” workers requiring more “mental patients”. Getting people out of the system is not what this business, as a rule, achieves. Sometimes what it achieves is a further medicalization of ordinary life.

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  2. Think you will find we are stone dead not interested any form of state set up situation… ‘state-approved training’, ‘standardized national peer specialist certification’ or any other bollocks. The whole fucking lot is corrupt. Lawyers have their place in this. But don’t get me wrong they are significant parasites as well, so they can do their job and sod off with their slice of pie when done .

    The murder is real. It’s just a matter of time, education and getting the correct pharmacogenetics and other science in place. It’s not seen at this time. But we will see a different value through the filter of change over time. When the gaze has moved on, our work will be heard ricocheting through time.

    https://www.youtube.com/watch?v=KjB7h00WO4Q

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    • We’re already seeing the effects of inter generational psychiatric drugging. We already know the corruption exists and is supported and protected by government. But, it’s nothing that a severe economic downturn couldn’t eliminate.

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  3. Can someone please explain all of this psycho-babble? Why on earth are there any psychiatric survivors who consider themselves to be “peers” in the ways explained in this article? It’s utter nonsense. What is meant by the phrase “psychiatric survivors’ experiential knowledge has been co-opted by the system”? Experiential knowledge? Really? Do we refer to those who escaped chattel slavery as having “experiential knowledge”? Do Holocaust survivors have “experiential knowledge”? The ex-patients movement? Who in their right mind would ever invent such a term or wish to be part of such a “movement”? Frank is absolutely right. This is nothing more than the corruption of what ought to be the psychiatric survivor movement. It’s all part of the psycho-pharmaceutical industrial complex mental illness industry, and survivors want no part in it, at all. I have some Barack Obama toilet paper, but Frank’s idea to create “psychology degree” toilet paper sounds great. Actually, “psychology degree” toilet paper would dignify the psychology degree too much.

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      • I don’t deny the reality of the thousands of people employed in such work. Thank you for your report. Could you please elaborate on what is meant by “co-opted”? Also, if you have any other insights into why psychiatric survivors would ever voluntarily choose to be a “peer” worker, that would be helpful as well. Thank you.

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        • What I mean by co-optation is: “The process by which a dominant group tries to absorb or neutralize a smaller, weaker group that poses a threat to its continued power.”
          I’m not sure that people who identify is “psychiatric survivors” are the folks who take these “peer” jobs.

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        • This was a very obvious thing in the 80’s. The predominant way that alcoholics recovered in the 40’s-70’s was by involvement in a 12 step group consisting of only peers that met in a public building. They shared their experiences and supported each other through thick and thin. There were no cops, no social workers, no professionals. Everyone was equal or peer supported. Then someone had the brilliant idea that AA’s twelve steps weren’t good enough because they had no professional overseer’s (bureaucracy). Thus, the “chemical dependency” co-optation was born and only those holding degrees were seen as a source capable of overcoming the struggles that alcoholics and addicts faced. Ironically, AA was actually created because the medical profession had little to no success. The same thing is happening now throughout the mental illness maintenance industry. The same one that teaches everyone that they are victims of “illness” that require “professional” help.

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          • AMEN. AA may not be perfect, but its real power has a lot less to do with the slogans in the Big Book, and more to do with the power of fellow sufferers helping each other. That is why, every ten years or so, the professional treatment industry tries to declare it obsolete.

            Thanks Squash!

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    • I guess this doesn’t apply only to the “peer support” idea but to the entire mental health arena. Everything evolves around the notion of chemical imbalance and that psych drugs + therapy has seemed to show the best outcomes.

      However, I do need to say, as a depression/anxiety sufferer for many years, I now find myself feeling total apathy, lethargy, sadness, anxiety, crying, etc…

      I’m at the point where I cannot even start anything constructive for myself due to my severe symptoms that have NOT been ameliorated for a while now.

      If many people in my shoes (25+ years on psych meds), therapy, self help, etc, cannot find inner peace, it’s almost worth it for me/them to go fully on the bandwagon of psychiatry so they can be themselves again! Maybe!

      At least in my life, I see no way out other than fixing my “for no reason depression and anxiety” using the system. I’m sure many people out there have TOTALLY LOST THEIR MOTIVATION and it feels totally biochemical. In my situation, I actually missed appointments with therpists, don’t eat well, don’y sleep well and my life has become one big hell.

      What are my options? I already tried a drug tapering method that failed. So when talking against the medicalization of mental illness, many times there are no alternatives; especially when a person was already subjected to so many meds.

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      • After decades of medications, it does begin to feel like the lie is real. But it really isn’t. Medications seem to cause the very problems they are supposed to eliminate, don’t they. But we were never warned that lifetime adherence is not beneficial to us in any way.

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    • The ex-patients movement? Who in their right mind would ever invent such a term or wish to be part of such a “movement”?

      Actually this is how we sometimes referred to ourselves early on, though always with at least air quotes in our heads. It would have been hard to organize psychiatric inmates when they identified as “patients” and wouldn’t realize we were talking about them.

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  4. Thanks for the excellent article. I notice at a few places that you say that the professional staff “doesn’t understand” true peer support principles. I don’t agree with this. My observation is that they don’t BELIEVE IN peer support principles, and the more they understood them, the less they’d believe in them. Peer support presents a THREAT to the status quo, including threatening many professionals’ deeply held belief that they are inherently superior to “the mentally ill” and therefore have a right to condescend to and feel superior to them. Accepting a true peer support concept would be tantamount to admitting that they (the professionals) are not substantially different from the clients they are supposed to help. While such an admission would, of course, be tremendously helpful in allowing professionals to actually understand what works and what doesn’t work, the vast majority of professionals don’t have the courage to face the uncomfortable feelings that come up when they step down from their place of power and face the truth of their own oppressive behavior and their own prior experiences of oppression.

    As in any movement, cooptation is an effort to disempower a threatening group. No amount of education, training, or regulation will make peer support acceptable to the mainstream. They won’t give their power away voluntarily, with a few exceptions, and those exceptions will be hounded and driven out (as I was) by the violence and corruption of the system.

    What we need is not “peers” in the current system, but a new system not based on power differentials.

    — Steve

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    • Thanks for your comments. It’s been my experience that many professional staff don’t understand the philosophy of peer support, and that, as you point out, many do understand but are threatened by it. What I find particularly disturbing is the extent to which this co-optation is entrenched throughout the system. I wish I could see a way out.

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      • Thanks, Darby, for your article and your work. The dominant medical model and ego degreeism entrenched model always seemed to aggressively overshadow the “peer recovery speciailists” in places I worked, psychiatric adolescent state hospital and city community mental health centers. An entire culture change at the very top down was needed with all getting trained in peer support model and principles as well as the agency fully embracing and holding everyone accountable to those principles. There was a lot of lip service and praise for peer support on the surface but have yet to see an agency fully internalize the peer support model.

        Many of the professionals I worked did not want the peer support model, because they benefitted from the old model in their status, power, autonomy and income. Some were just so used to one way of doing things, not wanting to change that inertia set in which becomes frustrating to those who wanted change. Some like myself just left these entrenched systems in disgust and exhaustion.

        Thank you for your efforts. I do believe that change is possible.

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      • I feel straight to the heart what you have written. I experienced some of the reality you have expressed first hand in my first ever temporary “Peer Educator” position. I had no idea I would make such a great impact on people in need of support as a Peer, but be almost slayed by the clinical powers to be and a project manager. I am not sure I will ever look to go into a Peer Support related role again or not, because the ambiguity and idea of being usurped into something totally different from the original premise is disheartening. But, I will say that being part of a Peer Specialist training initiative put forth by APS in many ways has empowered me in my own recovery journey, and manages to instill hope in my heart and builds up my strength to stick with life. I am evolving in a sense beyond my diagnosis and stepping up to the plate and hitting some home runs. There was a time that I just could not figure it out, and especially after so called professional therapist help, but to me there are stages in the recovery journey. Therapy took me so far, and it is useful for some things, but Peer Specialist training is shedding new light for me and instilling a different kind of hope. As an individual in recovery who is learning empowerment, which is hard to do at first, but once I sparked that flame, I am warming up, getting hotter. I was at one point very cold in my recovery journey, frost bitten, but I am thawing out. And being part of a Peer Specialist training helped me, even if the powers to be are trying to flip the whole Peer Support movement backwards, I still think there is a way to fight to keep the hope alive pertaining to the true intent and/or premise. I am not sure how, but it helps to talk about it, at least for me. You have given me tremendous food for thought, and I am thankful you did the Literature Review. I gleaned a lot from the good, bad and ugly of what is happening with Peer Support. And I am a new kid on the block, so do not have veteran status, have not lived through some of those tough fights which made history, but I got mad respect for the old school. (Please pardon the slang term.) I feel and carry the sentiment close to my heart in my recovery journey and when I lend support to someone else’s. Being aware of the politics though is important, and advocating for the right of Peers to have equity in the workforce now, well I get where you are coming from a bit more after reading so many varied responses on your blog. I think the issue in some ways is way big and relates to the nature of capitalism and concepts of privilege in American Capitalism or Capitalist Society. Not sure what will cure those ills outside of a revolution and one cannot talk that talk, because might get thrown in jail these days. So you really lit my hair on fire with the challenges you present, but I cannot just throw my hands up either in the fight because then I feel as though I would have nothing, right now. Perhaps my feelings and perceptions will change in the future. I am grateful for the debate you sparked and authenticity you bring, in my opinion. I am really thrilled to envision the responses of the readers who spare no one in their remarks. Thanks so much for your consideration and greatly appreciate your time and that of your readers. Peace.

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    • I know an independent mental health centre where professionals are not allowed in unless they are invited. The person who started it said they would take over if there allowed in.

      I think that is the only way. Keep the professionals out and keep survivors in charge.

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    • Perfect! It isn’t the survivors but how they can discredit the “professionals”, eliminate costly degree programs and disrupt the nonsense of “best practices” that government buys in to. Then the research dries up, the demand for drug company toxins decreases, the economy takes a dip because the herd has moved on to other pastures, etc. It gets very complicated when one thinks about the actual hierarchy that exists and that the disruption of it would cause a domino effect.

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  5. Reading this guy Steve M comment just let’s me know Steve Harrington from Inaps was on correct path with forming good workplace relationships.

    The recovery champions at agencies who are not peers do much to bolster and enhance a better system.

    We Peers are trying to make a difference in system and lives we touch. From people getting services to staff to families.

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    • I concur with Ron Bassman! If people drop out of the movement now because things are looking bleak who will mentor the next generation of psychiatric survivors? My beautiful daughter is only 28 and she has been institutionalized and forcibly medicated for nearly 10 years, nearly half of her life! Who will teach young adults how to organize and stay the course when things look hopeless? I hope that people with lived experience who retire because of the the restrictions placed on them by their employers, will use the freedom of their retirement to get more involved in the movement for human rights (after a good vacation, of course)

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      • I agree, Madmom. I am not about to “drop out” anytime soon. Although I must admit a few people have tried to convince me to “drop out.” I tried. I really did! I really tried to NOT read anything from MIA. I tried an MIA vacation. I couldn’t do it very long. And I do not want to “drop out.” I don’t have it in me.

        I am not saying one shouldn’t take a break. Nor am I saying MIA or any “movement” stuff is addicting. What I am saying is that I feel fucking passionate about this. Why should I not? I LOVE the passion I feel. That passion is who I am.

        It is exactly this that gets me up every morning. It is this that lets me eat every day, and keeps me from starving myself, and keeps me from immersing myself in my eating disorder like I used to do. It gives me a reason to go on.

        It keeps me writing these words. And I keep on writing. It is the same passion that makes sure I never, ever give up.

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      • Madmom-It is amazing but I know that I can never return to a point in time when I don’t have the knowledge I do now about this corrupt system. I can’t pretend and I can’t ignore so I am always preparing. Reading, waiting for moments that present themselves to interject the truth as gently as possible. I may be forced into the nightmare that is the system again, but I can’t forget what I’ve learned while free of it. I hope to never be victimized by it again and hope to keep forging a new path so that my kids/grandskids are not assimilated and held hostage in a system that has no concern for their well being. People are beginning to see that “mental health” is a parasite feeding on their weakness or that of someone they love. Many people are becoming leery of this system that has promised more than it can deliver for decades. I applaud, inform and support everyone who is waking up and those who haven’t yet. We keep each other moving forward to the goal of a more humane world.

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  6. Thanks for your article. It is very sad seeing Peer Support being co-opted into clinical services. In our last contract round the DHB, District Health Board, decided to put in it that all peer staff would be working towards or have an NZQA, a formal NZ recognised, qualification. We got them to change it to IPS, which in my opinion is far better and keeps us doing what I consider “true peer support” not as you say just another nursing assistant or support worker. The NZQA qualification here is just that, a community support workers course with a tincy bit about peer support. Unfortunately here in NZ they are into large community organisations now rather than lots of little ones and the largest one has co-opted a ever increasing number of peer contracts, they pay lees to under cut other contracts and the peer workers I have met that work for them are very disillusioned as they are unable to proper peer support. Fortunately we have been able to stay small and have IPS recognized. I hope your research helps in keeping the roles we want rather that are decided by the powers in the corrupt system. It is bad enough making sure we don’t bite the hands that feeds us but to be co-opted into clinical service is sad. i worked as a clinician before doing peer support and it has been a huge learning curve to change my ways of thinking and practice IPS….it one of the best things I have ever done and led to me stopping my psych meds (successfully). Although I still use some if I’m going high as I can’t find an alternative that works.

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  7. Peer Support? No, that is no good. It implies recovery and rehabilitation, the Uncle Tom route for dealing with injustice.

    We need Comrades At The Barricades, because the way people evolve is by claiming their place in the world, and by fighting shoulder to shoulder, and by restoring their honor and their biographies.

    So you can keep your peer support, designed to create basket cases.

    To Live And Die With Honor
    https://www.youtube.com/watch?v=vlWVV5imXSM

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  8. Peer-developed peer support is a non-hierarchical approach with origins in informal self-help and consciousness-raising groups organized in the 1970s by people in the ex-patients’ movement.

    No, sorry, we NEVER used terms like that in the 70’s. Consciousness-raising always leads to ANTI-psychiatry positions, not to accommodation with the system. “Peerdom” has not been coopted, the very concept IS cooptation and was developed as a way to destroy the movement. It is rarely seen as positive except among those who are in the process of being psychiatrized. It’s yet another demeaning label, as the obvious nuance is that there’s a more authoritative power than that of “mere” peers.

    No one should be surprised that the system is laying claim to more and more “peer” turf all the time. It is, after all, their term and their idea.

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    • Oldhead, I did not say those terms were used in the 69s and 70s- I said I created these categories while I was doing my lit review. As far as I can recall, no one used the term “peer support” unti the late 80s-early 90s, and I think the term originated in the system, not the movement. Before then, people I knew called it self-help.

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      • OK cool, I wasn’t accusing you of anything, just trying for some historical accuracy. The reason it’s important and not just nitpicking is the way the term has been twisted and manipulated into its effective opposite, in typical Orwellian fashion.

        In retrospect we can see how what were formerly known as “consciousness raising” or “people caring for one another” were turned into commodities and “skills” to be administered, certified and regulated by the same forces which the movement had, up till the point of official disruption, identified and opposed as our enemies. The notion that the psychiatric inmates’/anti-psychiatry movement “evolved” into the “consumer” movement is a gross distortion of history often promulgated by those who benefit from such misinformation.

        I get and basically support the intent of your article, just questioning any belief that the system is appropriating “our” term, as it was theirs all along.

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    • As I’ve been saying, OldHead, the real culprit here is the “mental health” movement. The “mental health” movement would impose it’s version of “mental health” on everybody. The “alternatives” or “recovery” or “peer” movement or whatever is part of this “mental health” movement. Should the “mental health” movement ever stop trying to impose “mental health” on everybody, where is the problem?

      It’s not just a matter of psychiatrists serving as the high priests of the “mental health” religion, not when you have so many evangelicals out there pitching for the system.

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      • I said nothing about “the mental health movement, “the recovery movement,” nor the “peer movement” – whatever those are. I’m part of the psychiatric survivor/human rights movement. I’m not sure why you feel the need to attack me and other psychiatric survivors who blog on MIA.

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      • Again Frank, I don’t know why you call any of these tendencies “movements”; except for anti-psychiatry — which has at least some shared analyses and goals, despite a current lack of centralized coordination — these “movements” you cite strike me as no more than ambiguous concepts with no unified voice or objectives. Even NAMI is little more than an “astroturf” organization funded by Pharma.

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        • Are you kidding!? Anti-psychiatry is a movement when it gets organized. The “mental health” movement IS organized. If you are saying the “mental health” movement doesn’t have “shared analyses and goals”, you’re only fooling yourself. Disorganization by definition doesn’t have any “centralized coordination”, besides who needs to be so doggedly authoritarian anyway. I’m not saying we need “centralized coordination” any more than I’m saying we need “centralized leadership”, an office in DC, and that kind of thing. I’m just saying there is a big difference between Mad In America and Americans’ Against Psychiatry. That’s a wagon I’m still waiting on.

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        • I’m not trying to attack you or anybody else, Darby, but I’m not trying to defend anybody either. I see the “mental health” movement as the enemy. I’m not out to analyze where you or anybody else stands in relation to that movement at this precise moment. I am a part of the psychiatric survivor/human rights movement, too. I’m with you as far as that goes.

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          • Pretty much, and then some, for instance, family members out to put away their kin (Pete Earley et al.).

            Anyway, if you need a refresher, here are a few links, starting with MHA because MHA began as the National Committee for Mental Hygiene founded by Clifford Beers way back in 1909. Mental Hygiene has since morphed into “mental health”.

            http://www.mentalhealthamerica.net/our-history

            http://www.inquiriesjournal.com/articles/1428/the-forgotten-illnesses-the-mental-health-movements-in-modern-america

            http://www.janpols.net/Chapter-2/3.3.html

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          • Checked out the 2nd link. By what authority does this guy make his assertions other than access to the web? To quote:

            Currently, members of the MHM are attempting to recover from some of the consequences of the neoliberal age of deinstitutionalization (Morrow et. al., 2008: 2).Though advances towards legitimizing mental illnesses and the agency of those struggling with such conditions were made, it is presently essential to the agenda of the MHM to discuss the potential of re-institutionalization.

            So it looks like this “MHM” is just another words for the cops and the psychiatric gulag.

            Semantics maybe, but this strikes me less as being a “movement” and more as just business as usual.

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          • Cops and the psychiatric gulag, sure, that about covers it, and some with the “best of intentions”.

            Get that this particular bozo lays “deinstitutionalization” on “neoliberalism”. I guess the answer then would be to spend more on institutions. Others, E. Fuller Torrey, for instance, would like to blame “deinstitutionalization” on antipsychiatry. Hmmm, institutionalization? Doesn’t that have something to do with that gulag you were talking about?

            Business as usual, but the business of organizations, organizations that actually support the gulag.

            APA, MHA, NAMI, TAC, SAMHSA, etc.

            Wouldn’t it be nice if our business were defying and defeating that gulag!?

            I always thought that that was what it was.

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          • Maybe Torrey should consider his own effect on helping create the anti-psychiatry movement, as his original book The Death of Psychiatry echoed Szasz in its deconstruction of “mental illness.” We often quoted his examples, e.g. that there can no more be a “sick mind” than there can be a “wise space” or “purple idea.” So give credit where credit’s due. 🙂

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          • Do you mean the same E. Fuller Torrey who founded the Treatment Advocacy Center and who is an associate director for Research of the Stanley Medical Research Institute?

            That E. Fuller Torrey is 80 years old, and I’m hoping, optimistically, of course, that he will be retiring from the scene soon, if not retiring from life altogether.

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          • Yes, the exact same E. Fuller Torrey.

            His 180 degree about face is comparable to notorious 60’s turncoat David Horowitz, who started as a white radical then became an anti-Panther, racist demagogue claiming that Black people should be thankful for slavery.

            Back to Torrey, hopefully the growing chorus of anti-psychiatry rabble shining a light on his treachery has made the past four or five years unfulfilling enough to speed along a decision to retire.

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          • Nasty algae, OldHead.

            Changing clothes paid with the end of the sixties. Kind of like the big ex/patient movement government buy out/sell off of ’85.

            That there were so many sell outs, I would call only to be expected. This country has had a long history of sabotaging, for instance, the labor movement, and when it comes to white middle class college kids, who find the war has ended, college is over, and they still have to make a buck. Hey, what do you know? Here comes another gig opening up with the oppressive establishment, that is, like, too good to refuse. Hmm. So their price was a bit lower than you thought it would be.

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          • That’s why I left those 3 links up there, Darby. Now you, or anybody else, have 3 takes on the “mental health” movement that you can make whatever you will out of. As is, it’s not really a “mental health” movement at all so much as it is a “mental health” treatment movement, and that’s something that just doesn’t sit well with me. Treat anybody else, thank you. Leave me out of it. I’m perfectly content with my present madness.

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  9. Darby I wish I could forward this article to the peer support employers that turned me down. I applied to a number of them. Laughably, one employer made me do an online personality test, one of those employment tests they have you do to see how compliant you are. I hope I failed miserably!

    Many peer support jobs in my region require a driver’s license and they check if you have ever had any speeding tickets, etc. I asked why once and they said because you visit “clients” and drive them to appointments. Is this not a form of coercion? I couldn’t apply to such jobs even if I wanted to because I do not have a license.

    Other peer support jobs turned me down due to my lived experience. Ahem.

    One I applied to had a group interview. I noted that the other candidates did not have lived experience. They were college students, specifically, social work students, who wanted college credit for being “peer support” workers. Huh? Apparently the agency didn’t care and wanted them anyway.

    I notice that there are very few opportunities for peer support in the eating disorders field. In fact, ED treatment centers try very hard to end friendships between us. They claim we will “trigger” each other, or claim we’ll “interfere with each others’ treatment plans.” They will stop any discussion of human rights, confidentiality, or informed consent.

    I was turned down for a blogging position by an ED organization because, in their words, “We don’t object to your writing but we’re afraid you might discourage people from seeking treatment.” Yes, they were probably right. I hope to save lives.

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    • These deluded people who presume to determine who “qualifies” as a “peer” are the same people we used to sit around and discuss strategies for defeating, back in the days when oppressed survivors defined the movement and not our “mental health” overlords. We didn’t need to call one another “peers,” as this was implicitly understood and didn’t need to be pointed out.

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      • Professional staff are not “peers”. Ex/patients are “peers”. I don’t see any call to get stuck in that kind of an inferior/superior situation. There is as much variation among so-called “peers” as there is among so-called “non-peers”. So much for the us versus them dichotomy this sort of jargon facilitates and fosters.

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      • Hey, oldhead. I’m the author of the 2nd link you commented on a while back (about the mental health movement, as it has come to be called). You seemed to take issue with how I presented the MHM. I tried to be nuanced and non-biased by providing a sociological analysis of the history and consequences of different aspects of the MHM, though I support deinstitutionalization.
        As an advocate, how can I better present these issues and stand up for the rights of people stigmatized with labels of mental illness? My main intention is to support “the eradication of stigma surrounding mental illnesses,” but I need feedback like yours to ensure I frame these issues correctly.
        Thanks!

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    • Julie, I appreciate you sharing the bizarre situations you’ve encountered trying to apply for “peer” jobs. Most of the places that have these jobs have no clue what peer support is, they are just looking for cheap labor, in my opinion. A number of people have told me they are sharing this blog and my article with employers or with state mental health agencies that promote “certified peer specialists.”

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  10. This article explains well the way in which, if not careful, Peer Support will become in the public sector a creation unrecognizable to those who fought for the right to self-determination, and to those who continue to support each other daily outside the definitions of state control. Creating a manual for Peer Support, as what often is one reference point for “competencies” in medical model professions, is antithetical to the essence of Peer Support. As a musician friend once reflected, “the music is what happens in between the notes.”

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      • I understand. I can still come upon some rare exceptions. I am hesitant to talk in absolutes.

        Wonderful blog. Thank you very much. I sent on to Beth Filson to help distribute to iNAPS members an awareness of your excellent message.

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          • Good morning,

            I am only reflecting what I see and is happening periodically. Joan Keenan, before she moved from CA to OR, was part of developing a good training series for traditional organizations about integrating Peer Specialists into mental health services in a meaningful way. Also, there are two great examples of Integrated Health Care programs within the AZ system which are centered on Recovery and Peer values, while maintaining a traditional shell to conform to requirements for third party billing.

            I am concerned that Peer orgs have not yet found a way to coalesce and collaborate for a more powerful voice. Each Peer org represents only a segment of the whole, and we see what that has achieved. There are some states in which the Peer orgs have actually achieved pretty good collaboration and mutuality, and within their state structure, stand a better chance of having their values and roles respected and incorporated; yet is way too rare. We need to be strength-based and join together around values and principles to be effective in a diverse set of roles, IMHO.

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    • Correct TirelessFIghter3. I’m sick and tired of psychiatry but doesn’t seem like any alternatives are really taking charge! Many people still suffering and being lured into psychiatry due to desperation. Do we blame them? Do WE HELP THEM???

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      • First you separate the issues. Defeating psychiatry is one, helping people is another. Psychiatry does not help people, so helping people is not an “alternative to psychiatry,” it is just part how we should conduct ourselves as human beings.

        To call for “alternatives to psychiatry” sets up psychiatry as the standard, when it should be seen as the very opposite.

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        • “it is just part how we should conduct ourselves as human beings” Tough to say because many people have “mental health” crisis arising from unknown sources. True, I had my issues growing up but by now, I don’t know who I am. This COULD be due to psychiatry but when I had my first anxiety breakdown, the “gold” standard was medication and therapy. There are MANY people in this predicament and we cannot abandon them. I know many websites LITERALLY struggling to help people manage to get off meds and live a productive life…

          I agree there are two issues; I’m just crying from my own pain where there is so little support.

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          • Unfortunately, cb, you are right, there isn’t much support out there but it depends on where and how you look for it.

            I know this is just me and it might not apply to anyone else. Sometimes, the harder you look, the harder it is to find it.

            And if you look for it in others, you might not find it. I used to think I needed a therapist, and I did not find a therapist. I thought I needed a friend but I couldn’t find one. I looked around and then there was only me and my dog. This was around 2012 and I had this flash of something, I wasn’t sure what. Puzzle (my dog) and I were standing together in the kitchen and I figured it was just me and her and somehow everything was going to be okay.

            Nothing was okay after that for a long, long time, but I remembered that exact moment like it was saved in a photograph even though it wasn’t.

            After that I had a terribly scary thing happen (trauma) that made me fear this thing called “help” as if it were a four-letter word. I am still scared. So whenever I hear “help” I am scared like it’s a knee-jerk reaction. I am blessed with the trauma that protects me against the help that is not help at all, but harm.

            Now I remember that photo.

            See what I am saying? I am blessed because I found the real help by shedding the false “help” and finding it instead within myself. Well, me and my dog actually. I know the idea of self-reliance is a culturally centric one, but I embrace it now as I did as a young kid when I read Emerson and Thoreau and incorporated the ideas into my own ideology. I should not have listened to psychiatry’s imposed ideas of dependency, but alas, I was swayed for too many years.

            We survivors have a lot of unbrainwashing to do, and it is a difficult road indeed. There is no help, and very little support.

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  11. In the 1970’s the area that had the greatest use of peer support was in public schools. Thousands of programs were created by teachers and counselors where they recruited, trained, and provided supervision to high school students who wanted to help their peers deal with a variety of issues. Named “peer counseling” at first and later more likely “peer helping” or “peer assistance”. These programs spread to colleges, universities, community agencies, senior citizen groups, and the business world. Many of the programs became student-initiated peer programs or as you say “peer developed peer programs.”

    The reason I mention this brief history is two-fold. One, many people engaged in mental health peer work are not aware of the extensive development of peer programs in schools, often because the terms used to describe the programs make them appear different or unrelated. The second reason centers of co-optation. This was also a concern during the original development of school-based programs. That is, students who were already using natural helping skills to provide listening, understanding, and support to their friends and members of their peer group were recruited to become “formal” peer helpers. Many of the training programs co-opted the student’s natural inclination to help into a more “professionalized” type of help, thus possibly weakening the natural help that existed within the teen’s social milieu.

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    • This sounds pretty specious to me, I was around in the 70’s and never heard of anything like this. At any rate, when I was in high school any group of “peers” appointed by our teachers or principals would have been regarded with derision. Though it’s possible that such programs did serve as the prototype for the serf-master relationship between present day “peers” and the “mental health” system.

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      • He is correct about these programs in schools. I taught in a school in New Orleans that developed such a program for students helping one another. I can’t say how affective it was because I took another teaching job in a different school before we could see any real results from the program. I can’t remember the exact title of the program but do remember that it had the word peer in it.

        Actually, the students didn’t react to it in a negative way since there wasn’t a whole lot of involvement from the administration of the school. The seniors mentored a certain number of underclasswomen (it was an all girl school) with a teacher attached to each group. Teachers were not the leaders, the seniors were the leaders. It was kind of like a discussion group where the girls could bring up things that they were dealing or struggling with in their daily lives.

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        • Yeah but the student “leaders” had someone to answer to, I would presume.

          Not questioning that something like this may have existed so much as the idea that it was a major phenomenon I’d guess it was more significant to those pushing it than students, on the whole.
          But it is interesting, as it does seem like the idea may have later been lifted by the psychiatric establishment to use against the mental patients’ liberation movement.

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          • The student leaders answered to one another and to the teacher who was with their group, though the teachers were not expected to lead.

            Interestingly enough, students welcomed this program into the school and seemed to make good use of it. There were some very good discussions in the group I was attached to. I suspect that the fact that all the students were girls had something to do with the acceptance of the program and their willingness to discuss issues they were experiencing in their lives. The majority of students gave the program a thumbs up. I also wonder if this didn’t reflect the possibility that there was not a lot of discussion going on in families about the issues the students were experiencing.

            As I say, I don’t know how the program turned out in the end as I left to go to another school.

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      • I did! We had that in my high school. We had that for many issues, including drugs, that is, street drugs, but not just that. It’s a great concept but yes, it was co-opted. It is a term used in the workplace also. Peer support is used as a workplace terminology to mean a workplace support and networking between workers or sharing between one workplace and another professionally. Such as networking between specialized nurses. If you look on Glassdoor (if you are looking for a job) and input Peer Support you are unlikely to come up with what we’re familiar with. You’ll come up with anything from truck driving to nursing to business specialties. Yes I tried.

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    • I know psychiatry has been very much in the school system for awhile. What do you get? Conduct disorder, oppositional defiant disorder, attention hyperactivity deficit disorder, and all sorts of other bogus “mental disorders”. Plus the drugs they are selling, and the concordant damage that goes along with them. This kind of thing is way up there with scanning school children for “mental disorders”, isn’t it? What have we got here, after all, if not the manufacture of “peers”? The medicalization of childhood, what with all the surveillance and monitoring that goes along with it, really has a head-start there. If the government isn’t in your bedroom, it soon shall be, it’s already looking after your children. Personally, I think that is something that should be left to parents.

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      • I think that one of the worst things that ever happened to the public school system is the introduction of psychologists into the system.

        They don’t seem to talk much with the students about issues students are experiencing as much as they “diagnose” said students with labels that enable the students to be drugged with things kids should never ever be taking. The psychologists seem to be more on the side of teachers and administrators than they are the actual students whose welfare they’re supposed to be looking out for.

        I taught high school for fifteen years and never once dealt with a student who I would have labeled as a “mental health problem”. I dealt with difficult students and with students that I wanted to take by the scruff of the neck and shake until their teeth rattled, but never kids that I’d label as needing drugs. It didn’t enter my mind to even consider the system in relationship to the kids I taught on a daily basis. It truly shocks me to see the number of kids these days who are labeled by the system.

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  12. Penny:

    Thank you for laying out these issues perfectly! I find it incredibly useful to distinguish between peer-developed peer support and peer staff model. I think you are spot on about the origin and history of peer-developed peer support in the seventies and it makes a lot of sense that this history should not be overlooked.

    Some individuals identify with their mental health diagnosis and identify as being helped by their conventional psychiatric treatment. Do you think that peer developed peer support is dominated by individuals who identify with having been harmed by psychiatric treatment and who are therefore critical of psychiatry in general?

    I occasionally hear complaints in social media sites from individuals who feel that they are being ‘pill shamed’. I have no way of telling if this is an authentic silencing of voices in the peer support movement or if this is a tempest in a teacup being generated by big Pharma trolls, or perhaps a mixture of both.

    Also, I have a question about the degree of harm that a person experiences in the mental health system and whether this is a factor in sizing up whether an individual qualifies as a peer, in the absence of any standardized definition of a peer.

    For example, I am a parent who has receives voluntary mental health counseling. I collaborated with at least two counselors to select a diagnosis of ‘adjustment disorder’ mostly for billing purposes.

    Acquiring a mental health diagnosis allows me to to obtain talk therapy that I would normally not be able to afford and I find it to be empowering. It provides me with insight and inspiration to fight for human rights in the mental health system.

    Does my experience in the mental health system qualify me as a peer or does one have to be a victims of psychiatric torture and abuse? I think there are more distinctions that need to be made in this whole discussion of ‘Who Gets to Define What it Means to Be a Peer.”

    In my mind, I am a peer but not a psychiatric survivor. How important is this distinction when applying for work in the mental health field?

    Is a psychiatric survivor at higher risk of employment related discrimination if he/she is out of the closet about his/her psychiatric abuse? Conversely, is a staff peer who is happy about the psychiatric services he/she received in the past less likely to experience employment-related discrimination?

    Is employment related discrimination likely to result in a migration of peers back to their ‘roots?’ (from the peer staff model to peer led peer support model as characterized by grass-roots groups meeting in church basements as they did in the seventies?

    The fastest growing trends in the movement for human rights in mental health seems to be Hearing Voices Support Groups and Psychiatric Drug Withdrawal Support Groups. These seem to me to be genuinely inspired by the principles of peer support your identified as peer-led peer supports.

    I am heartened that the Hearing Voices movement is developing some services for family members so there will be alternative ways for family members to get plugged in, besides NAMI which has become depressingly sold out

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  13. Madmom, thank you so much for your comments about this piece. In terms of what qualifies people as “peer staff,” I think it varies from state to state or organization to organization, and I certainly don’t feel qualified to make that determination.

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    • Exactly, Darby. It does vary from state to state and outside the US, too. Especially how each state uses “peers.”

      And, Madmom, each state’s commitment laws are different and each state’s patient rights laws are different. I come from Massachusetts where they have what’s called the Five Fundamental Rights….These I have not seen elsewhere. Most states do have a code and most do include something about Patient Respect…but this is not measurable and difficult to prove if broken. Most have basic laws about restraints that are rarely if ever followed. I am unsure if the locales claiming they do not use them really do not use them and maybe just don’t document it. The Five Fundamental Rights are very specific, a little easier to prove one way or the other.

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  14. As a psychiatric survivor/ex-patient who works as a peer I have to say that Darby and everyone who has contributed to the discussion are correct in everything that’s been stated here. People with lived experience cannot work in traditional settings and do true peer work.

    Peer organizations outside of traditional settings have difficulty staying alive because of the expense of running programs like respite houses and the like. But it is only in organizations run totally by peers that true peer work can ever take place.

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  15. I say now! We need to stop debating with Psychiatrists and Psychotherapists, and instead identify actions we can take, mostly refusing to deal with Mental Health and Recovery, and also targeting facets of it to put out of business. I don’t think this is that hard.

    In some states they have outlawed the practice of Sexual Orientation Realignment Therapy upon minors. I applaud this, and I see it as a first step towards outlawing the practice of any type of psychotherapy upon a minor, except for when it is for a minor currently being represented by an attorney in court.

    If we can do this, that will end the use of psychotherapy as a cover up, at least with minors, but it will also make the rest of the population take a closer look at what it is actually being used for.

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  16. Most of the peer worker roles advertised in the city I live in require a drivers license, a certificate qualification at least, and practical experiences. There is little differentiation between a mental health worker who doesn’t have lived experience and those who do.

    Here are my concerns about the peer workforce.

    1) There is no vetting of a person’s experience. I would assume that if you identify as having a lived experience in mental illness no one will challenge your experience. I live in a big city and occassionally you see news of people trying to pass themselves off as veterans, telling porkies on resume. It is not a far stretch for someone to get a peer worker role without having a genuine lived experience.

    2) The type of lived experience. The lived experience of someone with mere depression is much different to someone with schizophrenia, bipolar or other very severe psychotic illness. The type of experience that someone with a personality disorder, post natal depression, an eating disorder or PTSD is also a very diverse experience.

    My friend with schizophrenia has yelled at me for not taking drugs, partly because it was her experience that drugs managed the schizophrenia and helped the associated depression. She thought I was being irresponsible for not taking anti depressants. I told her she was out of line. I never criticise her for her choice in treated. Another observation is that many people who are on anti-psychotics express envy to those mental health patient not on drugs. When I was in the in patient ward last year a fellow patient wanted to know how I could do art in the context of the side effects from the medication (noting the tremors), then she remembered I didn’t take those drugs!

    The other point of diversity is the social background. The upper middle class bipolar patient probably has little to offer the person who has come from a deprived background. The tea totaller would have trouble relating to the patient with the dual diagnosis of drug and alcohol problems and the resulting mental health problems.

    3) Identification of potential Peer Mental Health Workers

    Organisations would be better identifying service users who have the potential to be peer workers and train them up. Ask them to look for potentially great people in dark places Often those with mental health issues don’t come from neat backgrounds. It is a shame that there is exclusion criteria such as education or a lack of a license will stop many people with excellent potential to be peer workers due to the rigidity of the environment. I would also exclude those with prior community services experience being hired as peer workers as you cannot distinguish between their professional background and lived experience (but of course they should be welcome to apply for the positions their professional background qualifies them for)

    4) Mental Health services tend to love blind compliance

    I always wonder to the services contribute to psychosocial disability by insisting on mind numbing compliance. I always wonder that the only people identified as potential volunteers are the completely obedient and when the hell raisers are often exited or dismissed as having no potential and they are the people who probably have the most potential.

    You are not going to attract the best people to peer roles if it is about blind compliance.

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    • Good points, bron76! Peer specialists definitely need lots of training and supervision. Working with individuals in crisis situations is emotionally draining and triggering as well. Peers are in a more vulnerable position in my opinion then clinicians like myself who are trained not ever to self-disclose unless in the benefit of the client’s progress in their goals. I have hired and supervised adult peers and had the first adolescent peers who were former patients who I knew as their individual and family therapist. There are similar issues of “transference” and “countertransference”, “overidentifying”, “vicarious traumatization” etc. that new clinicians have. Sorry for the clinical language, hard to de-program. Just because you have been through a similar experience of being labeled and in the mental health system does not mean you can fully be in the shoes of another. That needs to be acknowledged in the peer to peer relationship. I fully support having all peers run respite programs. I see the benefit just like I see the current benefit of “Recovery Coaches” for those with addictions.

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      • You don’t need “training” and “supervision” to support people, you just need to be a human being. The less of a human being you are, the less supportive you are likely to be.

        Seeing things in clinical terms, what with all the victim blaming there is in the world today, can be a way of being less than fully human.

        Anyway, that’s my 5 second visceral take on this sort of “peer” industry talk.

        “Yes, Virginia, there is life outside of the clinic!”

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        • I think peers are being more and more professionalized whether that is good or not it is going the way of other professions with certifications, etc. If getting paid, you are a professional. Friends, family or volunteers do not get paid. If get paid should be some standards, shouldn’t there? I wish that people would just volunteer and that natural supports like friends, family, ministers/priests would be more active and helpful. But we live in a culture of disconnection. Sadly, the disconnection is what is causing the problems.

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      • Knowledge is Power:

        As the parent of a survivor, a beautiful, intelligent daughter who was court ordered to receive conventional psychiatric treatment for about eight years, I find your comment slightly chilling. You identify as a clinician who is “highly trained never to disclose unless it is in the best interest of the client” is chilling for several reasons.

        “Untrained” psychiatric survivors delivering peer support probably have a lot more discretion and self restraint as it concern ‘self disclosure’ than you think. They probably know a thing or two about what is in a peer’s ‘self interest’ too.

        Survivors know that what they say to a professional will get documented in their medical records permanently and follow them from facility to facility like a ball and chain. What you say or don’t say can get you kicked out of psychiatric facilities without a discharge plan or any support services like housing. What you say or don’t say can be used against you in a hearing to take away all your civil liberties. Survivors know a few things about self disclosure, probably a lot more than you give them credit for. This kind of experience in self disclosure you can’t learn in college.

        What also chills me is the implication that you, the professional always know when self disclosure is in the best interests of your client. Do you always ask your clients before you disclose something if it would be in their best interest? In fact, how do you determine what is in their interests generally ? Do you spend hours reading 1,000 pages of their medical records to find out shocking examples of iagrogenic harm? When doing a client’s ‘history’ in while checking off little checkboxes, do you remember to ask if your client has ever been the victims of psychiatric abuse and harm or institutional betrayal?

        I am concerned about your implication that self restraint and discretion as it concerns self disclosure can be trained in a formal, academic setting. What did this training consist of? Did you give up a weekend to do a CEU on this topic? Did your professor assign a book on the topic of self disclosure and you parroted back the answers on a pop quiz?

        Self restraint and discretion as it relates to self disclosure and when such disclosure is in the interests of someone you care about are character attributes that can evolve naturally as a result of suffering and believe me, if you were court ordered to sit through hours of checklist interviews from pompous trained therapists and other ‘clinicians’ whose compassion ceased the minute the short hand reached ten minutes till the hour, you would understand the importance of self restraint and discretion.

        Peers are less likely than professionals to be thinking of the client in the lobby, the clock on the wall, or the billing paperwork. They are more likely to be authentically with someone, sometimes for hours, tolerating silence, weeping, even catatonic behavior from an acquaintance, friend, or family member.

        Peers are more likely to resist the temptation to blurt out platitudes in response to gut level pain, and less compelled to maintain a professional front (which is more for your protection than the protection of your client)

        Peers are less likely than trained professionals to use invisible teleprompters, spitting out dogma from some theoretical framework they learned in college.

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        • And I also apologize for the angry tone in my comment. I sense from your other comment, you are trying to do the right thing but you are complicit as a professional by working in a broken system that abuses people, pure and simple. When professionals who make money off the broken system lament about how nice it would be if the system were different, I can’t help but ask myself, what is your strategy for resistance? How do you challenge your colleagues when they disparage and dehumanize their clients? How do you own your privilege when working with people who have lost everything? How do you honor your client’s right to choice and autonomy when they have been court ordered to receive McTherapy?

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        • Let me provide a glaring example: I was seeing a psychiatrist through my HMO, because I was off work due to an emotional trauma and the disability insurance that came with the job would not kick in without an MD’s signature. He seemed okay, did not seem to play the usual crap. We got along well enough; he was signing off for me every couple of months, which was all I required of him. Then, he became unavailable. I had to see whatever psychiatrist was covering for him, and they would only sign off for a 2-week period. When asked when he would return, they always said “in a week or two.” Now, it took a huge toll on me trying to recover my equilibrium whilst having to report my “symptoms” to a brand new face every time I turned around. I got exasperated about the situation and gave them my 2 cents on it all in a conversation with the doc who was 2nd-in-charge (vice chair? whatever the title) of the psychiatry dept. And he blurted, “you gotta give the guy a break; he’s depressed!” speaking about my original doc. I confronted him big-time. Asked him how he determined that disclosing that private information about his colleague to me, said colleague’s patient, was in my best interest. Asked him whether he had a release signed by my doc allowing his personal, confidential health info to be revealed to me. He could only stammer.

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        • Dear madmom, I am definitely not saying that peers are less able to be discrete with self-disclosure. My point is actually that peers are actually in a much more vulnerable and authentic place then clinicians. I think that this can have far more healing power. Hearing trauma stories can have effects on anyone and thus my point is that processing it with others can be very helpful as MIA reader here do.
          My experience is with the start of peer specialists in traditional psychiatric inpatient and community mental health settings. I left working in these places due to lack of progressive change and abuse and power struggles by professionals that was very harmful. I refuse to work in setting with psychiatrists and forced treatment of any kind. I have challenged and been beaten down quite a bit by colleagues and psychiatrists. I advocate for those harmed by society in all forms. I see most professionalization in the “mental health field” as causing harm, an unequal power over others versus collaboration. I do not want any part of harmful power system. I want to be an honest and sincere human being in the struggle and pain I see around me and be able to be of some benefit to others. I work with those with physical illnesses now but certainly the pain and suffering of homeless, addiction and poverty is there as well. I asked God for help every day. I have met such incredible children, adults and families along the way. They changed me more in ways I can never give back. I wish you and your daughter much wellness.

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          • I so much respect your knowledge and compassion. Several individuals have been trying to put together some form a training for traditional professionals to help them learn what you know and practice. But reductionism in science, a pathology orientation, and the lack of training about how to go within for knowledge, is not easily overcome. The art and spirituality involved in healing through mutuality/collaboration has been sifted out by science in a reductionistic and misguided attempt to understand with empirical pureness. After the sifting is finished, sterility has been achieved.

            Thank you for your inspiring words, and keep the faith.

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        • “Peers” are no more “peers” than are professionals. I will always maintain that the truth lies entirely outside of the “mental health” system. What happens when you blur lines? You still aren’t getting people integrated back into society (i.e. outside of the system). It is the business end of this that keeps it going. “Disability” pays the way of the “peer” who in turn pays for “neurotoxins”, “rehabilitation”/imprisonment, “mental health” workers of all sorts, including “peer” workers, and the expansion of the system that goes along with recruiting “peers” into the business. The “mental illness” rate is going up you say? Small wonder.

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          • Right – lots of people, even when they’re being called “peers,” are going to feel like a one-up if they’re the ones doing the helping right then, even if it was them needing the help last week. It’s just human nature to want to feel one-up. So any kind of organization is going to promote that feeling.
            It sounds like it should be human nature to just be human and help others, but truth is, most people do a lot of damage to others without being professionals of any kind! How to get around that? I have no idea. It’s the rare person who can really “be with” and support, without giving the other person a feeling of inferiority. Maybe it’s an innate potential in all of us to help others as equals, but that doesn’t mean that we instinctively react that way. So maybe it does need to be taught in some way.

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          • Gabi, I think a lot of life has to be learned and cannot really be taught. One is active and the other is one acting upon the other as subordinate. Somehow when the learner actively self-teaches, whether or not there is a teacher who guides the learner, the learning is learned better because it is actively done. And wanted and sought after. If we are curious and want it, we will seek it, or if we feel a dire enough need we will make it a part of ourselves. It is like walking a mile a day because the doctor insists we exercise (we are likely not to!), and walking a mile each day because that is how we get to the bus to go to work.

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      • knowledge is power, I disagree with your perspective on “peer” staff; in fact, your attitude is precisely what my blog post is trying to warn about. I think it would be ideal if peer support were provided through stand-alone, independent organizations run by people with psychiatric histories instead. I think it’s next to impossible for “peer” staff to work in clinical organizations and maintain the integrity of peer support values. The only training “peer” staff need is about how to be in genuine, mutual, trauma-informed supportive relationships with others.

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        • I agree, Darby, should be independent organization, run by peers, have own way of running it. I am just telling you my experience with peers within traditional settings which does not work, they become just as “professionalized” and indoctrinated as the rest of us. They have to do similar roles and documentation and follow agency rules. These agencies whom I have worked are funded by Department of Mental Health. Their mission sounds like it is peer recovery focused but really mission in my experience is to keep the agency alive, co-dependency model. DMH was tough at times, too tough, and in meetings would make statements with peers and staff present, “That working is what adults do and not working should not be an option”. Recovery Learning Communities have been helpful but funded by DMH here in Massachusetts so not completely independent. Funding for independently run agencies is a battle that is worth fighting. Training is part of any agency even peer run groups. You have to decide on policies, etc. when become an organized entity.

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        • As an ex-patient/survivor trying to work as a peer in a traditional institution I would agree with you 100%. The only place where true peer work can take place and flourish is within those organizations that are run totally by peers themselves. The attitude found in traditional institutions prohibits peer work of any kind. You are essentially there to keep people quiet and compliant and any time you offer any explanation about what you feel would truly help an individual on the units to heal you are met with silence and isolation.

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          • Stephen, I applaud you for trying to make a difference from within and I am sure you do make a positive difference even amidst those who may not agree with you.

            We use to do debriefings after every restraint, a horrible thing to experience for patient and staff. For a while they were helpful and often painful. What could we have done better? Self-reflection and criticism of ourselves was encouraged for awhile. Restraints did go down. However, criticize the psychiatrist who ordered the restraint which I had seen incorrectly done several times and experience ostracizing and career suicide. I and others fought some good battles and won sometimes with HR, but MDs ruled and were considered more important to the hospital.

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      • Peer workers over here tend not to be terribly distinguishable from ordinary mental health workers. Some of the basic roles they need to fulfill are

        1) Group facilitator
        Subject matter experts who also have an engaging communication style should be considered the gold standard.This would include experience in delivering to those with MH issues. Someone with a professional cooking background will always do a cooking group better then someone with mental health training only.

        2) One on One
        It is the quality of wisdom that people need. Peer workers need to have insight into the limits of their knowledge. I think they need to be trained in the following things

        1. Common Psychiatric Diagnosis

        Consider the diagnosis of Borderline Personality Disorder. I recall a manager of a mental health day service near where I live express sadness that people with PD’s are condemned to a miserable life as there is no way of improving their condition. Would I recommend that service to someone with BPD! No! It is not healthy for people with BPD to be anywhere near any worker who would rob them of hope.

        Peer workers need to have insight into what the symptoms are of the most common mental health diagnosis and also related treatments. Back to BPD medication is so often not recommended, but a peer worker who has schizophrenia might be wondering.

        2. The workings of the mental health system. That is how does someone get admitted to hospital either voluntarily or involuntarily. Forced outpatient treatment. Mental health patient rights

        3. Peer workers who work in the community need to know what the local hospital inpatient ward looks like and vice versa

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    • yes you do make good points. I really would have wanted peer support sooner and would have maybe been more open-minded to trying something besides the traditional approach had someone who had had ED approached me. The problem is there is very little crossover between ED and psych. And there is pretty much NO peer support for eating disorders. God forbid people might actually get better and the ED treatment places might lose money.

      I don’t think you guys realize that there really is an ED community. ED is treated entirely separately so these patients hang out together. They become “treatment buddies.” They even call themselves that and they friend each other on Facebook. Sometimes maybe 400 or 500 friends, all from these ED treatment places. Many of these are residential treatment places where these young kids cycle in and out of. Many of them go in and out 10 times a year, every year, and they’ve been doing that since high school or even earlier. They are a clique. They have their own Facebook pages. It is not the same world as psych, and they look upon psych as different (although there is overlap).

      I never saw this world until I was over 50 and I was rather shocked. I was shocked at the human rights abuses these kids put up with. To them, it’s NORMAL to be locked up and they call it “treatment.” They don’t even know that it’s not normal to be watched in the bathroom and watched in the shower. They were taken too young. I was 50 and they called me granny and were very cruel from the onset. Then they claimed I was psychotic when I started trying to point out “human rights” to them. It was a losing battle.

      Never mind NEDA, which is the NAMI of eating disorders.

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      • When I was in hospital for self harm the nurses thought it was a great idea to lock my bathroom at night which was very inconvenient when I had a vicious case of gastro. One of the nurses thought my issues were mental health related and tried to feed me anti psychotics (despite the fact I didn’t have a psychotic disorder). Then told me off and told me I needed to wait for the day staff to come in before I could access the toilet again. This happened at 4am and day staff start at 7am thus a 3 hour wait. I became so agitated that I smashed a ceramic plate in the shower a few nights later. I got told off by the psychiatrist for being will full. Apparently I needed to be confronted. I bet that evil nurse never got confronted about her nasty behaviour. It wasn’t just that episode, she was just a judgemental cow.

        As far as ED support group goes, the problem with informal groups is that they could promote unhealthy behaviour and perhaps having a older peer or a team of peers + a psychologist could ensure the relationships keep on the right track. Because they don’t provide any facilitation of peer support it goes underground.

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        • Nursing has always been the problem department at the “hospital” where I was held and where I now work. We’ve managed to root out some of the worst of those that were here when I was held as a “patient” and we’re working to hire better quality people. It’s an uphill battle since I believe that those nurses who come to the state “hospital” to apply for jobs are probably not of the highest quality to be found in nursing. Since we’re run by the state the pay is not equal to what nurses are paid in area hospitals, of which there are three in the immediate area. We don’t pay as well and you remember the old adage, “you get what you pay for.”

          Unfortunately, nurses have almost supreme power, especially at night. When I was a “patient” the nursing staff was divided into two teams for the week. One team was tip top because the charge nurse didn’t accept less than adequate and proper work from her nurses. The second team was horrible since the charge nurse for them could care less what went on with the unit, as long as something didn’t get taken up front to administration. This nurse would sit at the nurses station with the other nurses and scream and laugh and make noise all night long. One night I went to the desk and complained about their behavior four times and it did absolutely no good. So, I wrote a complaint and all kinds of fireworks happened. The morning that she was confronted by the investigator about nurses behavior during her watch she assembled all us “patients” in the dining room and harangued us about how hard she tried to take care of us and we repaid her with turning her in to the administration. How dare us! She glared at me the entire time she was saying these thing. Finally I stood up and said that yes I was the horrible person who’d turned her in and that she knew that she was guilty so what was with all the hysterics? She shut up, glared at me, and ran off. There were no more nights of hysterical laughing from the nurses on that team.

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          • Stephen, At McLean Hospital the night staff were very unprofessional. In fact, I remember the staff being untrained and unprofessional on the whole. There was a marked difference between the “units” where the patients paid out of pocket and the “units” where patients were covered by Medicare. Huge. Medicare patients had untrained staff that had only high school education. The pay-out-of-pocket units were staffed with very experienced staff. I know this simply because I was there as both Medicare patient and also visited others, this over a very lengthy and involved period. These wealthier units had experienced staff, many having worked there over a decade. They were well-trained.

            Even the food was better on those units. They had home-cooked meals. The food at McLean on the Medicare units was about as inedible as could be. It was mass-produced, not like “tray” food you get in a community hospital that you order off a menu. They brought it onto the unit in a big container and then, dished it out. Like elementary school food. It really couldn’t be eaten sometimes. You worried about contamination.

            As for the staff…Night staff slept all night. Some quite deliberately. One of them, I recall, a woman, brought pillows with her to work. She put two chairs together and put the pillows on the chairs, just so she could sleep. Then, she put a hospital blanket over herself. The other staff, a man, ordered all patients into their rooms. We were not allowed to leave our rooms from maybe 11pm to 6am. Period. Exception may be to pee, but they would harass you for peeing even. Now this lady slept ALL NIGHT. I know this. I did get up to pee. I have diabetes insipidus and I get up every night, to pee and get a drink of water. The guy did not allow me to get a drink so I called human rights and he got in trouble. Sorta. She STILL slept through the night and would get annoyed if I walked past and disturbed her.

            The object of these night staff was to give the patients enough “meds” to ensure we slept and then, NOT WORK. The guy used his work time to study for whatever classes he was taking during the day or evening. He was not working, either.

            I am amazed that these night staff got paid. Why is it that so many people struggle to get jobs and keep those jobs, and these night staff got paid to NOT WORK and be so cruel to us patients?

            Then, maybe a few weeks later, I told my outpatient psychiatrist, “The night staff at McLean slept on the job.”

            My psych told me “That’s impossible. You must be psychotic.”

            I can’t tell you enough how harmful it was, all those years, to be called psychotic when I was not. It was like being caged forever. And how satisfying it is to be free now to write these words.

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          • I was in an inpatient unit less then 3 years old last year. They served food from a cafeteria window. It was of reasonable quality and there was a regular supply of fresh fruit and veg. This is a public hospital and I wasn’t charged a cent for my stay

            While the most of the staff were pretty good, there were a few staff I didn’t like. Some of the nurses were pretty hysterical when it came to dealing with self harm, they don’t understand the idea of stopping self harm is never about locking people away or creating physical barriers.

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  17. Good article Darby. It is important to distinguish between paid peer staff and mutual support peers. The basic function of the mental health system is of controlling the behavior of people not conforming to social norms. Cooptation is real because hiring peers to work in an untransformed system will inevitably lead to the peers carrying out that basic function of enforcing compliance. I have long struggled with how to change the basic culture of the mental health. I have carried out many fights from within, drawing on allies from outside. Our struggle to block the Murphy Bill was exhausting and frustrating. I still feel there is a role for organizing people with lived experience and hope that the new, non federally-funded Alternatives 2018 (July 29-Aug 3rd, in DC) can renew our efforts. We will have a preconference to discuss advocacy, our own day on the hill and then the conference to learn from each other. This certainly would be a great workshop topic. But ultimately we need allies from outside our field such as the disability, civil rights, and LGBTQ movements. I think our organizing is even more challenging than these others because we are the most dispised, most discriminated against group.

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    • I agree, Dan, with allying with others. Human rights violations, abuse of power and discrimination should be fought with a united front by everyone. Injustice is injustice. Reaching out to law schools has been useful as well as already existing legal/advocacy organizations such as Center for Representation. I would really like to see a class action suit where the funds go into funding organizations that support alternatives to mainstream mental health. I have spoken to attorney friends and say that it would be a long and expensive process. I still think it can be done. There have to be some idealistic young attorneys out there.

      There are many stakeholders in changing the current mental health system which is embedded in our healthcare system which needs reforming. This includes insurance companies, government, health care providers, the powerful AMA, as well as patients and their families. Healthcare is not a right in the United States. I think it should be. Healthcare costs are continuing to soar and not sustainable Our population is aging. We have a lot of battles ahead. Let us continue to have productive discourses. We do not have to all agree, but agree to be respectful and seek to listen and understand one another. None of us is perfect human beings with all the answers.

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    • The basic function of the mental health system is of controlling the behavior of people not conforming to social norms.

      OK so you acknowledge that the “mh” system is a branch of law enforcement, not medicine. Then you say:

      I still feel there is a role for organizing people with lived experience and hope that the new, non federally-funded Alternatives 2018 (July 29-Aug 3rd, in DC) can renew our efforts.

      You think the federal government should be in charge of “organizing” survivors, i.e. its victims? Where do you get those blinders from?

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  18. Darby, I heard sometime around late 2011 of the “Recovery Movement” which seemed to be a group of people who validated that there was such thing as “mental illness” but also thought you “recovered” from it. I never liked their ideas. They were big on “coping skills” and such. None of it related to what I was going through at the time, so I dismissed their ideas and moved on.

    Having discovered MIA sometime in 2013 in a flash I realized that others knew the same things I did, that what there was to “recover” from were the human rights abuses done to us. Whatever ailments we’d suffered from, if any, that brought us to their offices or “hospitals” were now either resolved or forgotten. For some, now, having left psychiatry and therapy far behind, we finally had a chance to deal with these problems head-on.

    The “recovery” movement avoids human rights issues. They kept saying “Don’t tell war stories!” I thought that defeated the purpose and I didn’t want much to do with them after that. It was like telling me to shut up.

    The one thing I want to do, still, is tell those war stories loud and clear so the whole world knows I was badly abused in a hospital. I don’t see the point in telling it in a therapist’s office. I want to tell a major TV station or newspaper, but I can’t pique their interest. I am still looking for a venue. Still. If I was rich or famous they’d care, but I’m not, so they don’t. There are so many of us bursting with these unresolved stories and nowhere to go with them.

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    • I’ve gotten the very same response from staff in the “hospital” where I now work and was once held. I am never to talk about the unpleasant or bad things, the war stories, that happened to me at the hands of the staff. And I’m never to share these stories with any of the “patients”, even if my attempt at sharing them is to give people some ideas of how you can handle such incidents as a “patient” without getting yourself a big seclusion and restraint. The recovery movement, so-called, is a big sham and a smoke screen to make people with lived experience think that they are truly important and cared about. The recovery movement exists to keep people quiet and compliant.

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      • Stephen I can’t even find a FORUM for hospital abuse! I can’t find anything. Others are looking, too. We are not alone, there is a large population dying to find a venue. I personally was called psychotic when I wasn’t, for decades, and it is very hard to explain just how deeply harmful this is. I was also called suicidal when I wasn’t, this was acutely damaging to me, and this, too, is very harmful. I also have this deep-seated anger in me that started in 2011 when I was deprived of water in a hospital to the point of medical dehydration. I can’t just wish the anger, trauma, and knee-jerk fear away, just like that. I have a lot of privacy issues that arose from the hospital abuse. And I cannot control other people’s insistence on seeing me as disordered. It is their choice to continue to view me through their diagnostic lenses. I can’t control this, but I can choose to not associate with those that see me as “mentally ill” instead of understanding that I was deeply harmed and might have good reason to need people to bug off.

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      • Exactly, Stephen. These “professionals,” the ones I used to see, spread around that I’m psychotic and tell other patients not to listen to me, not to be friends with me, that they’ll get “triggered” from me. NEDA (the NAMI of eating disorders) is pissed at me, too. On the whole, these sell-out organizations don’t like people that talk about human rights. I’ve even seen bogus claims that talking about “rights” is a sign of “paranoia.” Some of the patients, whose lives are basically full of the contradiction we know so well have been very very cruel to me, also. I’ve had to get off Facebook at this point. I deleted my account.

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      • If you’re saying the “recovery” movement is not a “recovery” movement. Agreed. I mean you’ve got all these people making their living “recovering” people from “mental illness” who would be out of work if they succeeded in doing so. Why aren’t there more “recovered” “schizophrenics” in the world? Take a wild guess. The more astute question is why aren’t there more “recovered” “mental health” professionals? You’re not going to “recover” “schizophrenics” (or former “schizophrenics”) without at the same time “recovering” the “mental health” staff designed to tend to them. Simple economics, pay people to do something, and they are going to do it. Stop paying them, and you are going to see some really angry people. I kind of think we should be paying them, if we’re going to pay them, to do something else.

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    • I was shocked when the Boston Globe published a story about a couple in Acton, MA (where I think mostly they have money) that kept getting packages from Amazon that they had not ordered. Now this was a major article in the Globe. Huh? This is the most trivial story I have seen, and THAT was deserving of a Globe reporter’s time and energy?

      I have contacted reporters. I have begged them to put my story in the papers. Why do they care more about this rich couple getting Amazon packages? Shame on them! One reporter contacted me and was interested but it sounded like she was going to put it in some very obscure paper…Still, I started telling her but didn’t get to the point fast enough, unfortunately. I tried to give her the proper medical background (assuming she’d need to know about the kidneys, no?) and then, she cut me off, impatiently, and hung up before I made it to the juicy part. “Hey, I was abused in a hospital.” I never got that far. She hung up saying she wasn’t interested.

      I can see why people get frustrated when they can’t get lawyers to sue and just aren’t being heard. When our friends and relatives claim our story is trivial (why don’t you just get over it?) and when the forums are only about drug withdrawal. When MIA will only publish four “personal stories.” When people say we have “anger problems” but we know our anger is justified. When expressing our anger is called yet one more “mental illness” worthy of therapy and pills. When talking about a mental hospital is called a “war story” like it’s a fucking taboo.

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    • Julie, many of us have been telling our horror stories for years, and I agree, we don’t get listened to very seriously. For 30 years, I’ve been part of the human rights movement for people with psychiatric histories, and I know/knew people who’ve been involved in that movement for 40 years or more. I’m not really sure what the “recovery” movement is or who identifies with it – I certainly don’t, and I don’t personally know people who use that kind of language. Are you familiar with the National Association for Rights Protections and Advocacy (NARPA)? I’ve been involved with them for 25 years, and I think you’d find people there who feel like you do.

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      • Darby, When we speak of this, why are only the “drug” stories the ones that are getting out there and the other horror stories suppressed? Why is it still called “hospitalization” when the doors are locked and people are committed by the courts, forced to stay, and even taken by cops from their homes?

        We have this recent story of a high school in Florida. They’ll talk about the about supposed “mental illness” till they are blue in the face, about how scary and violent we are, about how much they should abuse us even more with their treatments, with their force, and put us away for life and deprive us of every right we have. And totally miss the point.

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  19. I think if there was a peer support for eating disorders it would consist of helping people who 1. had the experience of struggling with eating and 2. had the experience of being traumatized by ED “treatment” (which is far more violating of human rights than regular psych “care” on the whole).

    That I know of, if you stay in longer, #2 looms larger and larger. The trauma increases exponentially and affects your eating difficulties…if you even manage to stay alive. I think a group of peers to help alleviate the trauma would certainly save lives.

    And…given the grim statistic of psych “hospitalization” increasing suicide rates drastically, peers who help by actually believing people after they leave these hellholes would be lifesaving. You shouldn’t have to leave a psych prison where you were treated like a subhuman animal, and then, go home alone and cry your eyes out for months, or fall into the hands of some therapist who will dismiss what you say and call you psychotic or call your anger a disorder.

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  20. My only experience with peer support is at the peer operated Wellness Centers (nee’ Self-Help Centers, nee’ Drop-in Centers) which my state claims are the loci of Wellness & Recovery. Sadly, the paid peer supporters too often treat us no differently then how we’ve been treated in day programs, hospitals, PHPs, and CMHCs. Peer supporters frequently emulate the models they have experienced as patients despite representations of considerable training. I had expected and hoped for better.

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    • Unfortunately what you mention here is absolutely true. Peers many times do the very same things that were done to them by clinical staff to the people they are supposed to be walking with. They use medical model language, write in peoples’ charts, and use coercion against people.

      In the training I received I am not allowed to use medical language since it only emphasizes what is wrong and never reflects the gifts, talents and abilities of those the language is used against. I cannot write in peoples’ charts since this shows that I have power and privilege over those I’m supposed to be attempting to form mutual relationships with. I am forbidden to try and make people do things that they do not choose freely to do on their own. And, I sit among the people on the unit rather than in one spot like the rest of the staff on the unit does. The staff all group together on one spot and just sit there and watch people, like they think that they need to protect one another. Oh, and I’m not allowed to talk about any of the “patients” to other staff unless the person I’d be talking about is present. The only way that I can carry information to staff is if the “patient” herself/ himself gives me permission to do so. It would be much easier to not have to strive for mutual relationships but then again it wouldn’t be peer work at that point.

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    • What I saw of it in Massachusetts, and I never visited any of the Western MA RLC programs, they really were identical to day treatment in every way. I was embarrassed and I didn’t know how to react nor what to say to the “clients” who attended. “Hey, don’t you realize you could be doing something useful with your time?” I had hoped for “alternative” meaning political activism, APA protests, education about why not to take drugs, but that’s not what was there. It was more validation of the System’s supposed illnesses.

      And breathing exercises remind me of nuthouses too much….I can’t stand the idea of someone telling me when to breathe. I am too anti-authoritarian for that.

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      • Recovery Learning Communities in Massachusetts are state funded, Dept. of Mental Health. They are certainly not political activism centers. DMH is old school “take your medications”, psychiatrists rule, medical model… Western MA RLC’s are at least the most radical in Massachusetts. I am sure Sera Davidow does a great job in her role and certainly is a great advocate there, but she certainly cannot say as a paid government funded program employee the most radical thoughts and ideas at MIA without some repercussions. I would give money to an independently funded agency that is peer run and politically active. Other organizations including my own, NASW, is reluctant to go against the MDs.

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          • The jobs I looked at but couldn’t apply for required a driver’s license…These were hospital-run organizations hiring supposed “peers.” Where I currently live one hospital runs the whole area. They’ve bought out other hospital systems that used to flourish here, so now, it’s a monopoly, just like Harvard runs a monopoly not only in Boston but all over Eastern MA expanding into NH and into Maine. So here where I now live, this one hospital system runs the medical establishment in an extremely wide area, branching into neighboring states. Common citizens hate this big business unless they are employees getting paid well by them! Also, this means patient record-sharing whether you want it or not.

            Anyway, they were advertising for “peers,” but all it was was “taxi service” to appointments. That’s why they wanted the driver’s license. I do not qualify because i’m nearly blind. As for lived experience, likely a few therapy appointments counted. More than that they probably didn’t want.

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      • Julie,
        I had the same experience in Massachusetts. One of the drop-in resource centers
        was located on the Maclean campus, in the dining room building, off the main dining room.
        Their so-called club-houses were fee-based programs of the DMH. Really sad !

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        • Yes the so-called “bipolar” schmooze club at the DeMarneffe building. Where the more bipolar you are, the more cool you are. Let’s support our moodswings, right? I think I showed up once.

          I showed up at the clubhouse in Waltham which I think was called…let’s see…Potter Place. I really thought just the name of it sounded like kindergarten. I remember I asked them if I could learn computers. They said I “wasn’t ready.” Wasn’t ready for what? So then it was just before my 40th birthday and I asked my mom to buy me a computer (since she asked me what I wanted for my birthday). I taught myself computers completely on my own. By the time Potter Place folks called me to wish me happy birthday I had already learned how to use Windows 95, AOL, email, and whatever they had for Word back then. It was before Broadband, way before Facebook. We only had dial-up. Then I went back to college and got straight A’s.

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          • Martn it was in that DeMarneffe building that i took part in mock board exams. I was a fake patient for that and I got paid $10 cash. A real $10 bill, handed to me by Dr. Meninger herself for being a guinea pig. I am proud to say I was misdiagnosed because they already had me misdiagnosed anyway. Maybe the resident guessed that I was recovering from shock and they gave him an F because “What?! That’s not possible. You need to study harder for the exams, buddy….”

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        • Martn, What is a fee based program?

          I admit it was Options Day Treatment that brainwashed me into becoming a mental patient in 1981. They did this without giving me drugs, they did it with “therapy.” I started off a college student and left the program nine months later in very bad shape. I can’t believe they called that therapy. They did not know what they were doing and they didn’t know a thing about eating disorders, which was my chief complaint. It is sad because I also saw incompetency handling other patients.

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          • Julie,
            These drop in centers in Mass., called club-houses,
            charge fees and require applications. I think it was called Potters House.
            In Vermont where I came from, they don’t even require a real name, and don’t care if you are or were a psych patient. In western Mass. there were some interesting things going on, but I moved 4 years ago.

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  21. You are very bright, gifted and a fabulous writer, Julie. I learn a lot from you. I could see you doing many things. Massachusetts Rehabilitation Commission and UMass Medical School Work without Limits has been a very useful resource for getting individuals with disabilities jobs in my area. I like navigating complex, archaic systems and enjoy helping others apply and get resources in their communities they may not know about.

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    • Thanks knowledge. I am happy that I got away from Massachusetts where I was threatened, basically told by my doctor I HAD to stop writing, demanded that I stop and insisted that I take disabling drugs so that I would be incapable of writing. Even the cops and my church threatened me which was not even legal. I suspect the church elite paid the cop to ruffle my feathers, but I will really never know. None of that was legal to threaten me like that.

      I keep telling myself that success is the best revenge. I know they did all kinds of things to try to silence me, including trying to have me locked up in State several times totally without any real reason, multiple attempts to drug me, insistence upon my dangerousness, etc. I have spoken to so many people about these incidents and the threats and much of it was not legal.

      I have put up multiple Yelp reviews that they cannot take down. I put up YouTubes also, and HealthGrades reviews and a few others that have not come down. I put up anything I can to warn others that these things can happen to YOU, too. My YouTube I did not long after I left Mount Auburn Hospital extremely traumatized (and crying too) got many hits and much support too.

      I also believe in naming the names of the guilty. Writers change names to protect the innocent, not the guilty. Sometimes there’s a fine line, if family of the guilty are involved, but we have to think of other potential victims here, too. Name the names. You will help others by doing so. Even save lives. Don’t protect a perp. The only time you can’t name a name is when you are at risk, then, you wait a while. Expose them for who they are. And be truthful and honest. That is just my opinion.

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  22. I am very very wary of anything called “disability” and rarely call myself by that label except to state that I don’t see well (and therefore, couldn’t possibly drive a car safely). Or to state that I am not very tall and therefore, need a step-stool at times. I am fearful of aligning with disability-help organizations. For instance, one in my area promised “jobs for seniors.” I am 60, so I “qualify” as a senior. However, when I called them, they grilled me! They asked me right away if I was dis-abled and then demanded to know what my dis-ability was. I refused to tell them anything and told them, “Why don’t you send me your materials in the mail?” They did. I got their application which included a place where a neighbor had to sign saying my living situation was what I say it is. And their “jobs” pay sub-standard wages, half-time only.

    This, they explained, was because it was “training for a job.” I question this seriously. If we are “seniors,” then why do we need long-term “training” for an entry-level job that others take only a day or two to train for? Why weeks or months of training? So I asked them what this “training” consisted of. They were very vague on that.

    I have passed up this (ahem!) opportunity since i fear it’s “day treatment” all over again. I fear that this “training” consists of “group discussions” and “let’s talk about it” and “how do you feel” and “pep talk” and “breathing instructions.” I really will miss the Group Hug, though…….

    If they phone me I’ll just tell them…maybe…I’m working on it….Or maybe I’ll say, “Hey, it’s in the mail…..”

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      • I think I linked it myself. Maybe. That is the blog that made my own personal history. I say that because really way back when, no one kept a blog. I mean back in 2005 when I started. My shrinks knew but they thought of it as a childish hobby. Occasionally they took interest in it. Cell phones were not common then. Until the advent of the cell phone, mental patients didn’t have interest in doing much online and didn’t have online access. Well, I was told I was “the exception.” I kept on blogging.

        Anyway, I kept up my blog and in 2011 after that water deprivation I was not only shocked, but totally LIVID. I blogged about it but my docs barely noticed.

        My doc and Massachusetts General Hospital took notice in 2013 and that is when all hell broke loose. MGH told my doc that she HAD to drug me till I was incapable of writing about the abuse anymore. They demanded she give me antipsychotics. She told me this in April 2013 and she was acting totally berserk, right in her office in the Wang building. I was so embarrassed. All this, over my blogging. She repeatedly threatened me, demanding that I “stop writing” and told me I was a “liability problem” for the hospital.

        I had a choice. Continue to write, or give in to them. Keep my freedom of speech, or stop. What would you do? I was even threatened by the cops early in 2014, and that was similar. Stop writing, or else……

        Well? I left the country! I value my freedom of speech and freedom of expression too much to stay in such an environment where I was constantly being threatened like that.

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  23. And another question. Peer work. What is work? How do we define “working”?

    I have asked myself this recently after a terrible experience working a low-paying job which thankfully is over. The bosses threatened the workers regularly and bullied us, all the while claiming fairness and claiming they were “sticking to policy,” ha ha. They added new policies all the time, every few days, and claimed if you broke their policy you’d be fired. I loved the scare tactics so much. I told them so.

    Anyway……giggle giggle…..So much for company culture. Pee faster? Fast food, anyone? I gotta laugh. One worker told me that in order to eat fast enough to shorten my break I should make a smoothie for myself. Geez, was it coming down to that?

    I challenge myself with this question…What IS work? What is a good worker? Is a good worker one who obeys a boss without question and does what she is told even if she disagrees? Or is a good worker one who thinks for herself and challenges what doesn’t make sense or doesn’t seem right? Will a good supervisor do what she is told even if it means bullying a worker she’s in charge of? Or will she do what she knows is morally right, defying upper management, and instead, be fair and kind, risking losing her job?

    What IS work? Which of these constitutes work and who decides? Why should a person who is following her conscience be let go, while a person who is merely following orders be paid and kept on?

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    • I am wondering about the word work too. Shouldn’t helping people be a pleasurable pursuit? I equate work with chopping wood and cleaning the hair out of the shower drain. Sad to think of giving another human being emotional support the same status as the thousand details I procrastinate and avoid everyday because it is work

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  24. I am wondering about the word work too. Shouldn’t helping people be a pleasurable pursuit? I equate work with chopping wood and cleaning the hair out of the shower drain. Sad to think of giving another human being emotional support the same status as the thousand details I procrastinate and avoid everyday because it is work

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    • Madmom, Hey, do you call writing several thousands of words per day “work”? Hmm…If they threatened me to stop doing it, is it even more “work”? ha ha ha

      If they pay you to write, is it work? If you do it passionately, is it more work? If you have a degree in it, is it work? If they claim it’s a disease, is it then NOT work, but a “disability” or a “compulsion”? Do you then get paid “disability” for it? What is that they call it? Grapho…..Geez. I hope I have a lot of that. That and oppositional defiant and very disorderly please. “While you are here, waiter, could you please add in an APA protest or two on the side, and please, no salt……”

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  25. Knowledge is Power..
    One of the stakeholder groups you mentioned, insurance companies present low yielding fruit in terms of strategic reform legislation. My daughter’s multiple ineffective and inhumane involuntary incarcerations at a private hospital cost our private insurance company several hundred thousand dollars. It took us years to pay off the co-pays. Where is the outrage insofar as many people are being forced to pay for the torture of a loved one or that insurers and taxpayers are asked to foot the bill for torture, fraud, and iatrogenic harm. I have since learned that consumers can ask for an internal or external review of all insurance decisions. Insurance companies in many states have been forced to implement parity laws which gives mental health disorders equal status. We need to extend the benefits of insurance to cover other more effective humane alternatives outside the medical model

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    • Hi madmom, managed care is here to stay. ACOs for Medicare and Medicaid are in full force to save costs. $14-$16 billion is the Masachusetts Medicaid budget alone. Unsustainable health care costs which are continuing to rise with aging population. Parity law is not often enforced. I met one attorney, Meiram Bendat, JD, PHD in California whose practice is enforcing the mental health parity laws.

      The problem as you stated is “ineffective and inhumane involunatary incarcerations”. I cannot even recommend in good conscience any inpatient psychiatric units any more. I know some great people who work in some better than other places but the cost of some of these facilities is astronomical and the care is still medications as standard of care.

      Psychiatric drugs pay the bills for these facilities. Psychiatrists become cash cows. Good treatment and care is no longer the center and mission. It is staying alive. Menninger Clinic used to be a beacon of good care, but when I was studying there as a fellow it was their last year in Topeka they were unable to be financially viable and had to merge with Baylor Methodist in Houston. It is our U.S. healthcare system and reimbursement rates for behavioral health that is much less than medical care. The standard of care for mental health treatment also that is upheld by the self-interested American Psychiatric Association as well as in part the American Psychological Association is the problem as well. Psychiatric drugs do not heal, they treat symptoms but do not address underlying root causes. Forced treatment just breeds distrust. No thanks, I am out.

      You sound like a very loving and protective mother. Your daughter sounds like a lovely young lady. I trust in your love and your daughter’s resilience.

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  26. A number of my friends are teachers and work with young kids with EDs because they are in their classes. Peer support is a great concept, but not when it becomes merely about telling war stories about psychiatric system

    Eating disorders can be deadly but I wonder if part of the danger comes from the unrelenting nastiness that eating disorder patients are subjected to while in hospital.

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  27. As far as the clubhouse goes. I think a well managed clubhouse would be beneficial. I am defining it as a social group facility which is entirely non clinical. The problem with this is that if you don’t get money from the government where do you get it from. Most of those with mental health problems cannot afford to pay very much at all.

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  28. From the point of view of one who was a CRC (Rehabilitation Counselor) and has been a CPS for the last eight years at a homeless shelter in Boston one issue that is important is unionization. Another issue is management. Both Management and SEUI just do not know what to make of me (us?).
    When I started another guy joined me as a PS but failed to complete the CPS training.
    I was offered more hours but declined the offer because management were not honest with me. In my interview DMH management said things but never followed through. Soon after this a new CPS joined. A new type. She is a politically appointed PS. A real insider with good experience and good at supporting folks. After a disagreement about ethical treatment of shelter guest between me and management. I was shown the door. I learned that being driven by values and acting on these values can put your job at risk. Not being politically connected I needed the union to help me keep the job. And the local shop stewert wasn’t going to back me up so help from another site’s union rep bailed e out.
    When I came on board I was on SSDI and not politically connected. Uncertainty is something I live with. Not all Peers are good or bad. Most of my days are good but I have had a few bad ones. At DMH unless you are politically connected and obedient to social workers who can be coercive towards guest you get in hot water. This can happen if you have a bad day and don’t bow to the stupidity of old tie mental health workers and campus police. Treating the homeless folks fairly is not a what I consider a bad day.
    I am now on my 5th social worker/supervisor. I am keeping my fingers crossed. I see my work as a chance to reduce the mortality associated with homelessness. But, the ignorance of management ; some campus police, mental health workers and clinicians is hard to overcome. Sometimes I feel instead of studying rehabilitation counseling, spending time learning the politics of giving up your values would have been better training for this particular position. My advice to a new PS is learn about self care. I went through some burn. Advocating for a culture of respect may be OK for me but there are union members more interested in talking about how to get overtime pay. I take most of the training is available. Except in the winter because homeless folks need support at such times. The steps I advocate for are informed by more than my own experience. I have gained the respect of most of the folks I work with, yet a few (including a PS) are in the range between hostility and uncertainty in my “support” system. There are important ways to help others without being a CPS. I a now hoping to just get work as a Case Manager. Good Luck and have a peaceful hear

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