Wednesday, August 10, 2022

Comments by Darby Penney

Showing 181 of 181 comments.

  • I first encountered Paula through her amazing and brilliant book They Say You’re Crazy. It was one of those rare moments of finding a professional expressing ideas in a way consistent with the beliefs of the psychiatric survivors’ movement. She was a great teacher and a wonderful ally to psychiatric survivors and rights advocates everywhere. Paula was so generous- I contacted her as a stranger asking for a blurb for my book, wrote a powerful blurb, and became a valued friend. I will miss her so much.

  • We’re not talking here about a “profession” that needs to be “regulated.” We’re talking about people who play various roles in a movement- some paid, some not- who are activists in a movement. So your suggestion isn’t applicable.

    What we need is for the movement to stop turning a blind eye when people who have influence in the movement use it to harm or take advantage of others.

  • Bob, thank you for addressing this outrageous behavior on the part of the NYT. It’s shameful that the paper printed a vicious attack as part of an obituary – as a former obit writer, I’ve never seen that done before. And Shorter should have had the decency to say nothing, under the circumstances. Thanks for calling them out!

  • Don Karp, I’m not sure why you say our history is “off.’ There is indeed an organization in New York State called Mental Patients Liberation Alliance of ex-patients that has been doing advocacy since the 1970s.
    And I’m not clear what you mean by a “trained peer.” What Sera’s article discusses is the MHA’s pseudo “national certification” of peer staff – I don’t see how that relates to our article.

  • Oldhead, please explain your strategy for eliminating forced psychiatry. In the decades I’ve been working on this issue, it’s only gotten worse. Yes, it’s an incredible evil. No, I don’t realistically see a way to stop it. But that’s not what this article is about. It’s about trying to stop one egregious manifestation of involving people with psychiatric histories in the oppression of others.

  • As usual, Bruce Levine gets at the heart of the matter. Many people who work on trauma issues believe routine ACEs screening is a bad idea that can potentially be re-traumatizing and shouldn’t be done in schools or medical settings. Trauma should only be discussed in the context of a relationship of mutual trust. The essence of trauma-informed approaches is to assume that everyone is a potential trauma survivor, and to do everything in a trauma- informed way.

  • Thank you so much for very carefully and factually rebutting the lies that Torrey, Jaffe, and their followers have used for 20 years to spread this assault on the liberty of people with psychiatric labels. But please stop referring to this practice by its 1984 Doublespeak name “Assisted Outpatient Treatment” without quotation marks. Force-drugging people with dangerous, ineffective drugs is is no way “assistance.” When we unsuccessfully fought to stop its implementation in NY 20 years ago, we called it Involuntary Outpatient Commitment, and that’s an accurate description.

  • Paula, thank you so much for stating this so clearly! I feel similarly whenever I read a piece on MIA that uses diagnostic language without stating that these labels have no scientific basis. I have tremendous respect for Bob Whitaker and all he has done for our movement, but I completely disagree with his stand on this issue. Continuing to use diagnostic language without critiquing it just because the general public is familiar with it is not a reasonable position. I fail to see how that’s any different from using racist, sexist, or homophobic language because you think people understand those terms better.

  • Marie, I don’t understand why you think that Sera’s analogy (“not all white people” “not all NAMIs) insults you as a white person. You don’t seem to understand the concept of white privilege. To over-simplify, it’s not saying that white people don’t face hardship, it’s saying the hardships white people may encounter are NOT because of the color of their skin. Why is that hard t understand and why do you feel insulted?

  • No, Oldhead, the “peer industry” was not created to undermine the psychiatric survivor movement. Those of us who did some of the early work in this area – which we never envisioned as an “industry” were trying to find ways to bring genuine grassroots peer support to people who were trapped in the system. With hindsight, I can say we were naive, that the entire idea was co-opted and disfigured by the system. In hindsight, it was a bad idea, and I’m sorry I had anything to do with it 25 years ago. But we were certainly not “treasonous,” and you give the system too much credit if you believe that the system created this on purpose to hijack the movement. The system is not that organized to dream up such a thing. What they did to the original idea is horrible, I agree. But you don’t seem to be fully aware of the history.

  • I’ve spent years studying the history of public mental health systems in the US, and there were no “good old days.” The folks like Dix who argued for creating bucolic refuges instead of the admittedly vile county poorhouses that often locked up people deemed mad in the 19th century sold the public a bill of goods. These mid-late 19th century “asylums” were horrid places of often life-long confinement in inhumane conditions.

  • Christian, I am still in tears from reading your account of the horrors you experienced in Ueckermünde, and am so sorry that this happened to you. I appreciate you sharing your experiences and those of your friends so that people understand that psychiatry is often brutal and harms real people. You have done a great service to other survivors and to people concerned about these abuses worldwide.
    Thank you – Darby

  • Sera, thank you for calling out the widespread and offensive belief that racism is a “mental illness.” And thanks especially for successfully turning the spotlight from an obnoxious white celebrity to the systemic racism that led to murder by police of a black man with a psychiatric label.

  • 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.

  • 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.

  • 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.”

  • The original Soteria House was a residential program for people who met the DSM III criteria for “schizophrenia” that did not use psychiatric drugs. To my knowledge, some staff were clinicians and some were not, but I’ve never read anything that said any staff were ex-patients who provided peer support.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • Sera, your meticulous, powerful response to the way you’ve been treated as an activist mirrors my feelings about my 30 years in this movement. As painful as it is to read, you’ve articulated so brilliantly the daily othering and degradation many of us face in our work. I’m really tired too. But I also find strength in reading and identifying with your analysis. Thank you!

  • Kat, thank you so much for your willingness to share your narrative about your trauma history from childhood and the re-traumatization you’ve been subjected to by the mental health system. You expressed this all-too common situation so powerfully! Until the system understands that most of us with psychiatric diagnoses are trauma survivors, and make an honest effort to change policy and practice to end the system’s continued abuse, nothing will change. Thanks for speaking out for us all!

  • Thank you, Noel! Thanks especially for clarifying the extent to which trauma is at the root of what gets diagnosed as “mental illness.”
    As a trauma survivor and a psychiatric survivor, I must take issue with Slaying the Dragon contradicting the statement that “aspects of mental health treatment can be very helpful for many.” While most of it wasn’t helpful to me, I found EMDR extraordinarily helpful in resolving many trauma responses; in fact, it was just short of a miracle.

  • I wish people would recognize that in this context, “peer” is not a noun but a descriptor. As we all know, “peer” simply means “an equal.” It has come to be used as a euphemism for “mental patient.” It’s fine to talk about “peer support,” which means “support among equals.” It is not OK to refer to a person as “peer” when what you really mean is they work in a peer role.”

  • I could write a treatise on why MHA (which is now indistinguishable in its philosophy from the Treatment Advocacy Center) taking it upon themselves to create a national certification contributes to the on-going downfall of peer support, which has been happening for 20+ years, but I’m going to save that for my own article on the subject. Very briefly, the main problems is that for more than 20 years, people in power – mostly people who have not experienced the mental health system first-hand – have conflated the practice of peer support (or what those of us in the ex-patients movement used to call self-help back in the 80s and early 90s) with a job title called “peer specialist,” in which people with psychiatric histories are hired to work within the system, often to do tasks that support the system in oppressing other people with diagnoses, rather than in providing genuine peer support based on mutuality. I know – I was in the thick of this 25 years ago, helping to create the first Peer Specialist civil service title in the nation in NY. I naively thought this was a way to bring genuine peer support to people trapped in the system. What I saw instead was people hired in those roles browbeat and demeaned by professionals into doing things like pressuring people to take drugs against their will, reporting on people to professionals, and also being treated like dirt by their co-workers. I’m sorry I was involved in this fiasco – it was a serious mistake. What I learned from that experience was that so-called “peer staff” should never be hired by traditional agencies, that the only way to bring genuine peer support to people involved in the mental health system is through independent, free-standing peer-run organizations that are dedicated to mutuality. Anything else is harmful. What is happening now with “peer specialists” working in mainstream organizations makes me despair.

  • Thanks, Eric Coates – you make a number of crucial points and it is important that people be reminded of the tragedy of the Nazi extermination of people with psychiatric labels and also of the lack of proof that so-called “mental illness” is inherited. But can we please stop referring to people with that diagnosis as “schizophrenics?” It’s demeaning.

  • This is incredibly offensive. You are playing onto the hands of people who use psychiatric language to demean others. I’m sick to death of trying to explain to progressives why it is harmful to people with psychiatric histories to weaponize psychiatric language against political opponents, but I’m disturbed that someone in our movement is doing this. Shery Mead, Chris Hansen, Sera Davidow, Cathy Bustin and I will be doing a workshop at NARPA next week about why this is harmful.

  • This article only makes sense if one believes that DSM diagnoses have any validity, which I do not. While I agree that practitioners shouldn’t publicly diagnose people they don’t know or speculate about their “mental health,” I think that misses the point. People- practitioners and the public- should stop talking about Trump’s “mental health,” which is a red herring deflecting attention from the real issue – his reprehensible behavior. Putting a psychiatric label on it is not relevant, and only serves to inflame the public’s dislike and dismissiveness toward those of us with psychiatric labels.

  • Michael, 30 years ago, I began working at the policy level at the NYState Office of Mental Health and first encountered NAMI, which was indeed pushing drugs and forced treatment, which they continue to do. They were responsible for the passage of Involuntary Outpatient Committment in 1999 in NY, which has hurt 1000s of people over the years. They also perpetuate the medical model myth, which says that so-called “mental illnesses” are “diseases” just like diabetes. The research says otherwise. Psych drugs, according to recent research, kill more people than heroin. Research shows that people on long-term psych drugs due in average 25 years early. And you want to defend the Big Parma funded lobbying & hate group that perpetuates this dangerous stuff? I don’t understand.

  • I have mixed feelings about this piece. I don’t believe in the concept of “substance use disorders,” nor am I thrilled with the idea of psychiatrists “prescribing” hallucinogens to people. But I personally benefited greatly in my own development from the conscious use of hallucinogens 40-some years ago, and I think they should legal and available to people who want to use them. And I don’t believe that back in the 60s and 70s “the psychiatric wards were full of psychedelically induced schizophrenia” (not a term I think is valid in any event) – I’d like to see some citations that show this.

  • Good point, Laysha! (And excellent piece, Sera!). There is no “gap” – as Laysha noted, many of us believe there should be no certification, national or otherwise. I find state certification equally as appalling, excellent in the rare instance where it’s controlled by people who’ve been through the system. I fought certification in NY when I worked for the state, but the person who followed me in that role has imposed it.

  • Frank, I simply don’t understand that argument that “institutional psychiatry IS slavery.” That’s just patently false. Psychiatry does not have legal ownership of a human being for her/his entire life. Institutional psychiatry is coercive, it is damaging, it is harmful. However, it is not – literally nor figuratively – “slavery.” And like Sera, I can’t even wrap my head around why some white people in this movement insist on using this term even though black people have made it clear they find that language hurtful.
    I don’t understand the vitriol of many of the comments from white people on this thread. Why can’t people have an honest , respectful conversation about racism without getting all nasty and defensive?

  • Thank you, Iden, Sera & Earl for this much-needed piece. In particular, I’m relieved that you told people to stop using the term “psychiatric slavery” – I’ve had an on-going argument for years with a white movement activist who insists on using this term, and I hope this person will listen now. I also appreciate your calling out the white SAMHSA administrator whose distortion of black leaders’ words at Alternatives (and the puzzling Oprah reference) was so appalling. I’m sure you will get offensive (or at least eye roll-worthy) comments to this piece… but I guess at least it’s good to know where people are coming from. Oh … I see there are some already! So thank you again for saying so clearly what we as a movement need to hear!

  • dkjamil, I am opposed to the many ways that psychiatry oppresses people, and I think it’s incorrect and very harmful to call it “slavery.” This is a hurtful false analogy which dishonors the memory of actual enslaved people and it is racist. Making these kinds of claims fuels the sense I’ve heard expressed by many African-Americans that our movement is not welcoming to them.

  • Apparently LOTS of us get EXACTLY what Sera is writing about! As a psychiatric survivor who’s been involved in progressive movements for 40+ years, it’s really clear from my experience that the left mostly doesn’t “get it” about psychiatric oppression. Progressives seem able to reject the biased b.s. of the mainstream media about every issue except this one. Why is that? And why is railing against oppression “finger-shaking” in your mind?

  • I find it frustrating but not surprising that comments on a blog post about the serious issue of women being silenced and mistreated in the movement have turned ugly, with men ranting about the non-existent issue of “reverse sexism” instead of acknowledging the truth: that the practices Sera described in her blog post happen in our movement every day, and that women – and the movement as a whole – are harmed by this. I’ve been involved in this movement for almost 30 years. It was a problem then, it continues to be a problem, and it needs to stop. I appreciate comments from men who recognize this as a problem and who express their solidarity with women.

  • Sera, thanks for calling public attention to this widespread problem, which I’ve certainly both witnessed and experienced way too often over the 25+ years I’ve been part of this movement. It’s ubiquitous and I’m sure many other women are fed up with this, too. And one wonders why funders and non-profit boards who are aware of these issues are not holding men accountable.

  • There are significant differences between peer respite programs and Soteria. The most obvious difference is that peer respites are staffed by people with psychiatric histories who provide peer support. Peer respites (which i believe is an unfortunate choce of terms for many reasons), are intended for brief stays, while Soteria programs are more open ended. There are also major definitional differences among programs that call themselves peer respites. I think this is a complicated area that requires a lot more examination and discussion.

  • David, thank you for addressing this important issue. The same thing has been happening in the US for years,as these roles have been re-defined by professionals not as “peer support” roles, but as low-paying paraprofessional roles that don’t really require experiential knowledge as an ex-patient, but are just a cheap labor force . As Alberta & Ploski note in the article you cited, the entire enterprise has been co-opted. Also I wanted to say as a non-Dutch person, I had some trouble understanding the acronyms you used. But that did not detract from the importance of your message. Thanks for putting this out there!

  • Sera, as ever, you have named a problem that seems invisible to most non- survivors one will encounter at conferences and trying to work with bureaucrats. And sadly this particular problem seems to have remained unaddressed in the 25+ years I’ve been doing this work. It’s very discouraging that we keep saying these things and people still don’t get it. It’s not rocket surgery.

  • I agree, Sera, it’s not enough to keep talking to ourselves- although there are plenty of people who attend Alternatives Conferences who have never been exposed to such ideas – and that approaches like Hearing Voices and Alternatives to Suicide need to be presented and highlighted at conferences that tend to attract “professionals.” But as you recently noted, attending those conferences can be painful.

  • Huh. Tell that to Ronald Pies. He claims that psychiatry never ever even told anyone anything about a so-called chemical imbalance. Maybe he should have a chat with Colin Powell and the presenter who misunderstood your question. Thank you, as always, for being incredibly clear and on point. I would not have it in me to be so nice in print to people spreading dangerous lies like this.

  • Sera, Thanks for writing about one of my favorite ridiculous ideas, “evidenced-based.” As an evaluator by profession, I think it is important for us to ask “whose evidence?” and “evidence of what?” when people throw this silly phrase around. Researchers (and the people who pay them) can make data say pretty much anything they like, so who paid for and conducted the research that is being cited as “evidence” is a key question. Also, exactly what did they set out to prove? There’s probably evidence that forced drugging and community treatment orders lower hospitalization rates, but that in no way proves that forced drugging and keeping people under surveillance is a good thing. If survivor/ researchers had the opportunity to set the research agenda, develop outcome measures for liberation,and were funded to conduct research, maybe we could start talking about evidence.

  • David Walker, thank you so much, both for calling attention to the ground-breaking work of Pemina Yellowbird, and the vital work that you did in the archives to document the treatment of Native Americans by the psychiatric system. Documenting the history of institutionalized psychiatry in America is a crucial undertaking – so many thousands of people’s lives were literally stolen from them. And the powers that be would like to sweep all that under the rug as if it weren’t still happening in a way that differs more in style than in substance from the horrors of the past.

  • While I appreciate that the author raised issues related to the social and economic aspects of disability, he did not acknowledge that these get short shrift precisely because of the hegemony of he medical model. And I agree with commenters who did not like the academic tine of this post, which is not appropriate for a popular website and serves only to create distance between the author and the audience. And the unreflective rant about “rigid anti-psychiatry” views was not helpful in furthering the author’s arguments. It was a nasty cheap shot.

    Among the key points the author glossed over is that even though people like Torrey and Insel may say things that acknowledge many of the flaws of Big Pharma and the medical model, that has no bearing on how psychiatry -particularly public psychiatry -is practiced. People are still put on an assembly line of poly-pharmacy, which DOES cause significant harm and disability to many people,even if the author does not wish to acknowledge this.

    The message I got from this post is that those of us who are concerned with the dangers of psychiatric medication and forced treatment should just shut up or it will be our fault if a right-wing congress passes n oppressive mental health bill. That is nonsense.

  • It’s hard to comment without seeing the instrument, but this is certainly not a new approach. Sally Rogers, Judi Chamberlin & colleagues developed the Empowerment Scale in 1997. In the the early 2000s, survivor/researchers Dumont, Ridgway,Onken,Dornan, & Ralph developed the ROSI (Recovery Oriented Systems Indicators) & Ridgway developed the Recovery-Enhancing Environment (REE) measure.

  • I hate to over-use quotation marks, but it’s important to me that I make it clear that I don’t consider extreme states “illnesses” or “disorders.” Also, based on almost 30 years of reading the literature on the effecicacy (or lack thereof) and “side-effects”of a range of psychiatric drugs, I don’t advocate their use – or at least, I advocate that people who consider taking them fully inform thmeselves of the potenital risks and benefits.

    But based on personal experience, I feel very differently about the voluntary use of psychoactive substances for the expansion of counsciousness and personal growth. I’ve experienced what others might call “depression” most of my life – although I call it alienation and despair. One of the things that has made a difference in my understanding of myself and my relationship to the universe is nitrous oxide (not done recreationally, but in the dentist’schair). On one such occaission, I experienced the purest joy, the deepest calm, a sense that everything was completely and impeccably understood and that all was perfect as it was. I merged seamlessly with all matter and energy – I WAS all matter and all energy – and no longer a separate entity.

    More than any psychiatric treatment or therapy I experienced before then -or in the 40 years since then- this experience with nitrous oxide had a more profound amelioration of my sense of alienation and despair. Theimperfectly recollected feeling of that moment is often the only thing that keeps me in this body. So it’s hard for me to understand why this might be a problem.

  • I’m glad this issue is being discussed, but I think it’s important to state a few things that weren’t explicitly mentioned. First, sexual abuse is not the only form of childhood abuse that may result in trauma responses. Second, events that occurr in adulthood can also result in trauma responses. Third, not every horrific experience results in a trauma response. Trauma happens when a horriying event overwhelms an individual’s ability to cope. Everyone’s coping skills and abilities are different, and each person’s may be different at different times in their lives. And fourth, the overwhelming majority of people in the mental health system are trauma survivors,so the system needs to adopt trauma-informed approaches to be used universally with everyone.

  • I found this piece very confusing and hard to follow; in fact, I’m not even sure I understand what the author is trying to say. Is she really advocating a return to solitary confinement, which research has shown is detrimental to physical, mental and emotional well-being, and which some of us equate with torture? And it is news to me that commitment to a psychiatric facility is no longer “unlimited.” Tell that to people who have spent the last 40 years in state hospitals and are still there.

    It seems obvious to me why many people who are homeless do not want to enter frightening unsafe shelters that impose all kinds of infantalizing rules on people in order to have a roof over their head.

    The author seems to accept Allen Frances’s terms of debate, but I do not accept DSM terminology (i.e., psychosis) related to the experience of extreme states. Why, in the face of all the evidence to date, must we assume that some kind of drug is the “answer” for people experiencing extreme states? The people I know who recovered from so-called “psychosis” did so after rejecting the drugs.

    I have no idea what is meant by “dine and dash.” In fact, my primary reaction to this piece is simply that I don’t understand its message.

  • While I fully agree that “depression” is not a biochemical matter, there is a robust literature – including works like Aldous Huxley’s The Doors of Perception – addressing the notion that positive altered states, including those induced by hallucinogens- can be helpful in personal growth. So while I’m not endorsing the use of ketamine for “depression,” I don’t think we should dismiss hallucinogens as potentially useful tools for people experiencing emotional distress. As someone who has been labled with “depression,” I personally have benfitted greatly from such experiences over the decades.

  • I must agree with B, above – “medical harm aware advocate” is not a clear term. Corinna, of course you are free to use whatever terms work best for you; why do you want to deny others that freedom as well? People who use the term “anti-psychiatry” know what it means; that’s why they use it.

  • I did a workshop yesterday at NARPA on Trauma-Informed Peer Support in Traditional Provider Agencies. Brief description: “There has been a recent, rapid expansion of “peer support specialist” positions within traditional mental health programs. These jobs are usually designed by professionals who are unfamiliar with the principles and practices of peer support. Research shows that this often places “peer” staff in untenable workplace situations and impedes clients’ access to genuine peer support services. This workshop will provide concrete examples of how administrators, managers, supervisors and non-peer colleagues can facilitate the successful integration of trauma-informed peer support into their agencies’ service offerings.”

    Tthis is a difficult question with no easy answers.More than 20 years ago, my staff and I at NY State Office of MentalHealth created the country’s 1st civil service job title for “peer specilaists.” For many reasons,I feel that was a mistake. The role was not understood by managers and clinicians, “peer” saff were often badly mistreated and made to do things that violated peer support values. I wish we had never created this job title, but that train has long ago left the station. It’s important to try to fix the way “peer”staff are used. It would be much better if all such peer support servcies could be delivered through peer-run organizations instead of within the system.

  • While I don’t support the use of drugs to alter memories, I’m wondering in what way the techniques described in the article are substantively different from what happens in EMDR therapy. My experience with EMDR is that a traumatic memory is recalled and then I am able to distance myself from the emotional impact of the memory by figuratively cutting the emotional cord between the memory and my current self. In this case, the memory is altered because the psychic and emotional charge has been disconnected from it. I think that’s altering a memory in a positive and healing way, and I don’t see an ethical problem with that.

  • I haven’t read Aslam’s piece in Psych Services yet, but my initial reaction to this brief notice is that “peer” staff should absolutely not be receiving services from the same agency where they work. It’s completely unethical to put these staff members in that kind of a dual role. In fact, it’s amazing to me that the administration of the agency would allow such a thing.

  • Thank you for raising this discussion. I spend most of my time working on issues related to trauma and especially to trauma-informed peer support. It’s clear that most people with psychiatric labels are trauma survivors, and the way the DSM manufactures diagnoses tends to keep that fact from being obvious to professions and people who would just as soon not have to deal with this issue. I think there are plenty of possible reasons why the field chooses to ignore the evidence, including financial interests and the fact that many professionals are also trauma survivors and may have not addressed the ramifications of that. A larger issue is that to deal with the impact of trauma, we would have to address the root causes of violence in our world, which is an overwhelming thought.

  • Wayne raises good points. I’ve found that advanced degrees in the mental health field tends to equal indoctrination into the medical model. And I’m glad he raised the issue that we are not “cases” and don’t need to be “managed.” So for me the question is not what kind of standardized training should a “case manager” have, but how can we create alternatives to the existing mental health system to provide voluntary support to people in emotional distress that they will find helpful? The existing system pretty much does everything wrong. It takes distressed people who are mostly trauma survivors and subjects them to the very things that make trauma survivors feel worse – forced drugging and attempts to control their daily lives. And Peter, I wonder what you mean when you talk about “prevention” and “treatment”? I don’t have an illness, so I don’t need treatment. And what would have prevented a lifetime of emotional distress would have been stopping child abuse, and a safe caring place for an abused child to heal. The system offers nothing like that.

  • Francesca Allen, so you think censorship is justificed if people use rhetoric you don’t like? Did you really just say that?

    I don’t see how the Unitarian Church’s decision is anything but cowardice based on a serious misunderstanding of human rights and social justice on their part.

  • Well, actually, Dr. Torrey, there IS such a thing as “anognosia,” and it’s a very specifc neurological term that you routinely use incorrectly… but theb, I’m sure you know that, since you routinely use langauge in a distred way, sucj as calling involuntary outpatient commitment “assisted outpatient treatment,” like people are being “helped” when they’re force-drugged with dangerous toxic chemicals. And then there’s the possibility that emotional and mental states that you call :sicknesses” are not sicknesses in any logical sense of the word at all.

  • Leah, thank you so much for telling your story, which echoes the experiences of so many of us who have been shamed, blamed, and forced to accept “treatment” that didn’t meet our needs because we wanted to die. One would hope that the so-called “helping” professions would react with compassion to people who are in such despair that the only escape they can see is to end their lives. And the public seems to have absorbed these ideas – people say things like how selfish people are who complete suicide, or how “unfathomable” it is that someone would want to die. Those of us who have been there understand and our insights would be valuable to the field if they would only listen. I’m so glad you are out there saying this to people who need to hear it!

  • Jim, I’m conflicted… While I agree with Peter Dwyer’s comments about the strength of your case, I also agree with Mary Saunder’s assertion that this is not a very rights-friendly SCOTUS. I’m deeply appreciative of all the work you do, and I expect that you probably have a gut feeling about what you want to do here? Whatever you do,just know how valuable your work is to our movement!

  • Tina, thank you for this thoughtful commentary on a book I’ve always felt I should read but never actually attempted (yet). It is fascinating that although Foucault was in some sense one of us (madpeople), he did not bother to discuss the writings of other people deemed mad.

    The following example form my own experience illustrates the idea of “entering into a person’s reality to persuade them of a beneficial act.” I had a friend on a locked unit who wanted to leave, but because he kept telling the staff he was Jesus Christ, they wouldn’t release him. I advised him that if he wanted out, he should stop saying that. And he said “But Jesus cannot lie.” I’m not sure where this came from, but I responded “But Jesus doesn’t brag, either,” and he agreed that he could stop telling them who he was, and they let him go the next day.

  • Greg, I love what you wrote, but in my experience, the general public, public officials,Big Pharma, the media, politicians, academia, and organzied psychiatry have no idea that biopsychiatry has been been disroven and that the the argument is over and we won. The public mental helath system, and those who organize and pay for the system, are still in charge and they continue to do harm to countless thousands of people. So we haven’t won yet.

  • Deron and Kelvin, thank you for this thoughtful and poetic piece. As “medication-assisted treatment” becomes more prevelent in addiction treatment, I’ve often wondered how the field could be so seemingly unaware of the surpreme irony of trying to treat addiction to drugs with other drugs. I’m currently reading Mad Science, by Kirk, Gomory & Cohen, and they have a section discussing in detail the false dichotomy treatment professionals make between “drugs” and “medications.” Thank you again for sharing so openly.

  • There are those who would take issue with Torrey’s analysis of why the Community Mental Health Act of 1963 “failed.” First, it’s hardly true that deinstitutionalization was already underway in 1963. Desinstitutionalization didn’t occur on a large scale until the 1970s, after court rulings in several states stated that forced unpaid patient labor (which is what made large-scale institutions possible) was illegal. Also, the Community Mental Health Act by-passed state bureuacracies for a very good reason: these were the entities responsible for the abuses of large-scale mass incarceration of people with psychiatric labels. The idea of the Community Mental Health Act was to put power & control in local hands. If anything was responsible for undermining the Act, it was that funding didn’t keep pace and states jalously held onto whatever power they could.

  • Tina, thank you for being the voice of reason in this debate, in which the mainstream disability “rights” organizations have sold the interests of people with psychiatric histories down the river! I have yet to hear a coherent agrument from any of the organziations you cited above as to why they are supporting ratification-with-RUDs, which should be anathema to any “rights” organization.

    I’ve also been very discouraged by reading pro-MH “parity” statements from psych survivor activists today. As you rightly point out, there is no “parity” as long as there is forced treatment.

  • Srea, I appreciate you talking about this topic in the present tense. Someone asked me recently day why my colleague and I include a section on self-jury in our training on trauma-informed peer support, and I replied that it’s because it’s the behavior that is most likely to get people punished and/or incarcerated by the mental health system, as well as ostracized by other survivors. It still freaks people out, and people still have a hard time having a rational converstaion about it.

    Your piece reminded me of a powerful book I read a few years ago, Covering: The Hidden Assault on Our Civil Rights, by Kenji Yoshino, a Yale law professor who is a gay man. While the book was framed around civil rights issues ralated to sexual orientation and race, its mesage applies to people with psychiatric histories, too. Basically what he was saying is that it’s become increasingly more socially acceptable to be different – whether that means being gay, black, or crazy – as long as you don’t act TOO gay, black or crazy and try to mimic straight, white, male, middle-class “sane” mores. I think lots of us who have psychiatric histories and work in the field are faced with this on a daily basis – we’re accepted as long as we don’t act like “crazy” people; in fact, we’re given less leeway to have the normal human range of emotions than people who’ve not been diagnosed.

  • Sounds like this group of folks internalized their oppression really well! Ann, I agree completely that people need more opportunities to think differently about their own sense of safety.

    Even after reading about about this card program, I don’t understand how a white card is supposed to protect anyone if the police shoot them without getting close enough to read their card.

  • This is outrageous. Why would anyone voluntary get an ID card identifiying them as a mental patient (unless their NAMI parent or a clinician pressured them to do so)? Explain to me how this is not like the Nazis requiring Jews to sew a star of David on their clothing?

    There are so many consitutional and HIPAA-related issues here, I don’t see how this can be legal. One hopes that public interest lawyers will take this up!

  • While I certainly agree that it’s time to retire the diagnosis “schizophrenia,”(along with the rest of the DSM diagnoses),the misinformation and sheer psycho-babble presented in this piece is astounding. “Manic depressive disorder” is “the condition that most often precedes full-blown schizophrenia” – Really? What research says so? “It was more likely his neurobiological fate to begin to experience auditory hallucination as his brain reached maturity.” Sheer nonsense.

    Or perhaps he was a trauma survivor? According to the article, “The police subdued the “gentle giant” with batons and pepper spray at the time, and placed him on a 5150 psychiatric hold.”

    And rather than suggest that all diagnoses are unhelpful, the article mentions replacing the word “schizophrenia” with something called “salience syndrome” (more psychobabble).

    Articles like this make me despair that we will ever be able to get through the absurd beliefs that the public seems to hold about so-called “mental illness” in order to have reasonable, rational conversations about how to deal with extreme states.

  • Bob, thank you so much for sharing this self-reflection… I hope you share it with the National Association of State Mental Health program Directors (NASMHPD) and that every single current state MH director reads and reflects on it!

  • Thank you, Sera, for saying this so clearly and emphatically! The absurd use of the word “peer” as a euphemism for “mental patient” has driven me straight up the wall for years and I’m tired of people rolling their eyes at me when I raise the issue. From now on, I will just hand people a copy of this blog post and move on.

  • Sarah, you always amaze me with the power of your writing, but you have really outdone yourself with the brilliantly written piece that confronts the lack of human understanding in the entire medical profession – not just psychiatry – and be being willing to reveal such a profound personal experience that could easily have gotten you psychiatrized. You demonstrated so vividly why so many of us keep quiet about the things that terrify us!

  • Sean, that was eloquent and brilliant and so needed to be written! I hope the staff who you met with understand how the attitudes that led them to behave so dishonestly with you are indicative of what’s so fundamentally flawed about the worldview that created the disaster that is the public mental health system

  • Thanks once again, Bob, for shining the light on the long-term and on-going connections between eugenics and psychiatry.

    I wish Insel and his gang would stop conflating “brain” and “mind.” Seems to me that anyone who’s taken an intro to philosophy course would get that these are two different things.

  • Dorothy, thank you for sharing your harrowing and beautifully written piece about the horrors you experienced and witnessed in the psychiatric system. It’s an outrage how little has really changed since. And I have to agree with theinarticulatepoet’s comments above – wanting and needing the attention of others is not a pathology, and it’s an outrage that mental health professionals twist things like that. It is a wonderful memorial to your friend Susan that you keep telling the story of how the system killed her. You are an inspiration!

  • David, while you’re certainly onto something about concerns about people maintaining their eligibility for benefits, I’m not clear how thta relates to the concept of “recovery,” or even “illness.” Lots of disabilites are not related to what is generally thought of as “illness.” For instance, if one is born blind or deaf, that’s not an “illness,” if one is an amputee, that’s not an “illness.” And it’s not a diagnosis of “mental ilness” that qualifies people for disability benefits – it’s the degree that their mental/emotional state interferes with various activities. So we really don;t need to talk about ilness or recovery in order to talk about disability.

  • Sera, you always seem to write exactly what I feel! The “R” word is one of those terms that was bestowed upon us by others (sort of the way we were suddenly named “consumers” in the mid-80s), and it’s always rankled me for exactly the reasons you describe. Thanks!

  • Chaya, thanks for writing this excellent piece. I too react to the term “mentally ill” the same way I do to racist,homophobic or sexist epithets. I get tired of hearing from people in our movement who use the term because they think it’s the only way they can communicate with the general public, when all they’re doing is perpetuating misinformation. Emotional pain and extreme states are not “illnesses.”

    But I have to admit that I’m partial to the late Howie the Harp’s favorite term for his fellow people with psychiatric histories: “crazy folks.” I’m willing to claim that one.

  • Bob, thank you for addressing this important issue (and for the great illustration via David Romprey). And I too hope more people stop refrring to themselves as “consumers.” Anyone who is at risk of being taken off in handcuffs by the police when they’ve committed not crime is certainly not a “consumer” of anything.

    I would add: if there is no “illness,” what are people “recovering” from? Or are they healing from abuse and growing? If there’s no “mental illness,” than how can there be “mental health?” So my own language choices come from the fact that I don’t think people experience “mental health challenges,” I think they experience extreme states or they learn to substitute coping strategies thta bring them unwanted negative attention with coping strategies that work better for them.

  • Anonymous, while I agree with the objections you mentioned about how the case has been reported, I’m having a hard time understanding why the media’s failings make you unwilling to sign a petition demanding that the university’s Depertment of Psychiatry should be investigated. The two things are in no way related.

  • Sera, thank you for sharing Mr. Pies’ letter to you and your incredibly restrained and informative response to his rather inarticularly rendered provatations. He apparently thinks anyone taking issue with his worldview is vituperative and insulting. Apparently he has little understanding of the effects of the power dynamics within the system or he would not be surprised that people who have been harmed might be a bit upset about that.

    Pies very clearly stated what his purpose was in writing to the NY Times: “My letter to the Times was aimed at asserting the medical and ethical legitimacy of the diagnostic process in psychiatry.” And this, clearly, is where many MIA readers have a fundamental difference in worldview with Pies. Despite what he says, he has not offered any proof that there is any legitimacy in the psychiatric diagnostic process. Just repeating over and over again that it’s legitimate is not proof.

  • Thanks, Sera, for another great piece. For more than 20 years, I’ve waged a war against the word “stigma,” arguing that the more logical way to discuss this is to talk about prejudice and discrimination. “Stigma” puts the onus on the labeled person, while “prejudice” and “discrimination” puts the emphasis where it belongs, on the attitudes and behavior of the perpetrators. No one, for example, talks about the “stigma” of being African-American, they talk about prejudice and discrimination
    against African-Americans.

    And over the last decade or more, research has shown that so-called “anti-stigma” campaigns don’t work to change attitudes; in fact, they frequently make things worse. So why do government agencies and some non-profits keep funding things as insulting as Glenn Close’s campaign?

  • Rossa, I think the point here is that hundreds of millions of tax-payer dollars have been wasted in recent decades looking for genes that don’t exist in support of an obviously unsupportable theory. There ARE clearly familial, social and political antecendents to extreme mental and amotional states, many of them associated with trauma, and why shouldn’t those be looked at? At the same time, there are, as you point out, many actual physical diseases that have symptoms that look like so-called mental illness, and any doctor worth his/her salt should rule those out before deciding the problem is mental/emotional. But I didn’t see that the writer was suggesting that we ignore these.

  • Sera, thanks for making this film; I’m looking forward to the opportunity to see it. In terms of your discussion in these comments with Corrina, I also do not see how her suggestion of using the term “disease model” instead of “medical model” changes the conversation in any way. In my view, “models” are the problem. I’m so glad you talked about the need to SAY that we don’t know the causes of all human experiences. No one “model” can possibly explain all the variations of extreme states that humans experience, and it’s helpful to state that.

  • Bruce, thanks for this well-documented and well-reasoned piece debunking the junk science and political agendas that perpetrate the myths of a genetic cause of so-called “mental illness. Re: voice-hearing, Oliver Sacks’s new book Hallucinations is an enlightening consideration of hallucinations- including hearing voices, hearing music, and blind people seeing people and scenes – that are attributed to a wide variety of neurological causes, drugs, sensory deprivation, etc.

  • Sera, thank you for your continuing insightful writing on the significance of the language and labels applied to us. My latest pet peeve is the way “peer” has come to be the system’s new euphemism for “mental patient.” It doesn’t even make grammatical sense, let alone any other kind of sense. I truly believe that if everyone decided that people with psychiatric histories should suddenly be referred to as “pinecones,” within days, “pinecone” would become a dirty word.

  • Jen, thank you for raising the issue of the violence-inducing effects of psych drugs, which the mainstream media has been ignoring since the Columbine shootings and every mass shooting since. But I don’t understand the title of your piece. I am NOT Adam Lanza’s mother. I do not own an arsenal. And if I had kids, I most certainly would not dope them up with psych drugs and take them to a shooting range. So in what way do you mean that “we are all Adam Lanza’s Mother?”

  • Not only does the article unquestioningly accept psychiatry’s unproven assumptions, it seems to ignore the obvious fact that the DSM is a collection of opinions strained through a committee process and has no legitimacy. The author writes about it as if it were some sort of scientific document.

  • Clearly if someone is experiencing neuroleptic malignant syndrome or other life-threatening effects of psych drugs, they must stop abrubtly. But I agree with hereto help’s comments, above, that the message that going cold turkey is perfectly OK in general is problematic. Many of us know people whose abrupt withdrawl led either to extreme physical health risks or so-called “rebound psychosis” that got them put forcibly back into the mental health system. Of course, I also know people who successfully stopped abruptly, but it feels like playing russian roulette to me. There is certainly a lack of psychiatrists who are knowledgeable about this and are willing to help people come off psych drugs, and there is a crying need for more such practitioners. Peter Breggin has a new book,Psychiatric Drug Withdrawal, which I haven’t seen yet – I’m wondering if others have seen it and have an opinion about it?

  • I agree – the civil liberties groups don’t seem to understand that those of us with psychiatric histories deserve rights protection. Judi Chamberlin once told me she was aksed to interview the world-reknowned human rights activist Noam Chomsky about human rights and psychiatry, and he told her it wasn’t a human rights issue, it was a medical issue.

  • As Paula Caplan’s excellent recent post in MIA points out, the basis of psychiatry’s power is the ability to diagnose – and to create those diagnoses out of whole cloth, publish the book thta defines them, and make a lot of money from selling the product. Paula pointed out thta the American Psychiatric Association holds all this power and is an unregulated monopoly which both defines and creates the “problem,” then profits from it.

  • Thank you, Daniel, for this very thoughtful piece about what has happened and is happening at Soteria-Alaska. One of the many things I have always appreciated about your work is your willingness to speak directly about the hard questions, to be skeptical in a kind and open way, and to speak the truth as you experience it. The unfolding and challenging story you describe at Soteria-Alaska just reinforced for me the complex, long-term trauma and damage that is perpetrated on people by the psychiatric system and how hard it is to undo that harm, especially the organic damage done to the brain by long-term use of neuroleptics. There is a desperate need for people willing to work with people who want to come off those drugs, but as your story clearly illustrates, it is a very different process than offering a supportive space for people experiencing extreme states for the first time. As Emily said above, both kinds of work are needed, but I would submit that each may require a different approach, and staff with different skills and/or personal characteristics. I know of no organized efforts to provide assistance to people coming off long-term neuroleptics – I’ve certainly never read about it in the literature- so I think it would be exploring new territory to do this, and there’s no clear guidance on how best to approach this task. I wonder about the possibilities of trauma tx for people who have been traumatized by psychiatry, and whether there are limits to what can be done to undo the organic damage that the drugs have caused. Thanks for the work you do and for writing about it so honestly.

  • Ted, thank you for sharing your movement history stories; I’m sure they’re a revelation to many younger readers who’ve never heard about the roots of the movement. I’d just add that for many people, this has always been and continues to be a human rights movement, not a “recovery” movement, although our voices often get lost in the shuffle these days. For people interested in additional recollections of the early days of the movement, the transcript of an oral history interview I did with Judi Chamberlin about 10 years ago is posted at: http://www.community-consortium.org/projects/chamberlin-judy.pdf

  • Altostrata, you’re assuming that bioethesists make recommendations that are actually ethical. I worked for a couple of years in the bioethics department of a medical college, and I’ve never seen such a bunch of unethical individuals. I think the medical establishments generally keeps them around to concoct complex, highfalutin-sounding arguments to pursue the unethical practices they want to engage in anyhow. As a field, they have tended to make bad pronouncements related to people with disabilities, especially people with psychiatric disabilities. In my experience, Carl Elliott is an outlier in the field – a bioethisist who actually deserves the title!

  • Re: Anonymous’s and Ted’s responses to this piece: They state that they don’t trust doctors (and clearly with good reason) but seemed to have missed the point of Carl Elliot’s article: that there is a flawed, secretive, profit-driven system in place, required by the federal government, that is supposed to protect human “subjects” in research studies, and does not do so. This harms everyone, especially those in the general public who take drugs approved by the FDA under this flawed system and have no idea that the drugs may have been approved based on tainted studies. It’s all well and good for those of us who take the time to learn about these issues, but most people don’t and are unwittingly at risk.

  • It seems to me that the authors of this article have decided “If you can’t beat them, join them.” For years I have ranted at anyone who will listen about the bogusness of so-called “evidence-based practices” in mental health. First, I think one has to ask the questions “whose evidence?” and “evidence of what?” But one also has to look at the impetus behind the status quo wanting to create these so-called EBPs; I think it’s basically to perpetuate cookie-cutter ways of responding to people without considering or addressing their indiviudal histories and circumstances, and to make poly-pharmacy a routinized practice.

  • As part of a program evaluation, I conducted interviews with veterans with trauma histories who participated in jail diversion programs. One man who was diagnosed with PTSD ranted about the Seroquel that the VA prescribed him. He said that it made him unable to function, and that he threw it out and smoked medical marijuana instead, which he found helpful (this was in a state where medical marijuana was legal). Almost every traumatized vet I’ve interviewed in these programs has been put on psychotropics by the VA- many on multiple drugs-and I’ve yet to meet one who found these drugs helpful, and many seem almost paralyzed by the heavy drugs.

  • Jack, thank you so much for writing this much-needed article exposing the racism inherent in New York State’s involuntary outpatient commitment laws. I’ve always felt strongly that Swartz et al’s conclusion that their data showed “no evidence suggesting racial bias in the application of AOT to individuals…” was completely disingenuous. Of course it does; anyone who can read a research report understands that. And I find their tortured explanation that “… the AOT rate is influenced by a number of ‘upstream’ social and systemic variables such as poverty that may correlate with race” a particularly hideous way to avoid stating the obvious outright: that the entire system is permeated with racism from top to bottom.

    And I agree that advocates should be calling much more attention to this issue. But I think you are mistaken if you think NYAPRS will try to block “Kendra’s Law” in 2015. In the past, they’ve not taken that position – all they’ve done is try to keep it from becoming permanent by supporting a temporary extension. I hope other advocates will step into this vacuum, make the obvious racism a central issue, and kill this law once and for all.

  • Nancy, I appreciate that you shared your painful story and I’m so sorry for what you went through. I worry a lot about the way Seroquel seems to be handed out like M & Ms – as you point out, it is being prescribed as a sleep aid for people with no psychiatric history (not that it should be prescribed to anyone!), which just boggles the mind.

    I hope some of the psychiatrists who post on Mad In America will read your piece and respond in a thoughtful and non-defensive way to what happened to you and so many others who trusted in their psychiatrists.