Showing 38 of 38 comments.
Excellent review of what’s happening in the world of AI and what to warn us about. Thank you!
I’d love to see the ACE questionnaire include trauma that happened in adulthood. I just got off the phone with someone who had been seeking help for his depression and he clearly identified a trauma in adulthood that was the beginning of his struggles with depression
Nicely said Alita! This is exactly how I worked at Soteria House before ever going to grad school or getting my Marriage and family counseling license. I loved learning about OD as it’s the essence of truly “being with” someone that opens the space for discovery. I keep experiencing the harmony between the Soteria model and Ooen Dialogue. Working to bring these together Hopefully someday!
One day at a time. Indeed! Your vision is a nice one we just need help finding the donors for this rural vision. Sounds anbjt like a country version of Soteria house
WEll said Will, Bravo! And, I believe the work we are doing at the Foundation for Excellence in Mental Health Care could be a hub for everyone coming together as we try to make contact with the 1% philanthropists….and meanwhile we all must work on getting rid of the electoral college and bring our voting rights back to actually mean something!
Join us, spread the word, bring those with influence and resources to our community to actually implement the models of change. One step at a time? Yes, but it’s better than doing nothing.
Alisha, I was delighted to read your flowing thoughts here. As the person who started 2nd Story many moons ago it warmed my soul to read your experience and to know things are still going along as initially envisioned ! Thank you for sharing!
I hope that you will submit this well written rebuttal to the American Journal of Psychiatry. and maybe to Columbia and the NYT!
thanks for taking the time to provide us with this analysis!
I agree with you. Calling me out on my choice of words, drugs vs. medications . I would hope that from the gist of my blog it would be clear where I’m coming from.
Good catch. Thanks
Is the health system funding this wonderful crisis house or?
Thank you for clarifying and sharing more in depth what transpired in the name of ” conflicts of interest” , indeed we all have them, it’s the lack of transparency that so often is missing in these human “negotiations”, or in your exchange here with BMJ, the lack of response which only catered to more subliminal conflicts….sure would be nice if one day we might expect the dialogue, the sharing of our opins and conflicts so we might have a full conversation, which doesn’t mean we will all agree but at least multiple truths might be heard for all .
So I guess we can’t use science any longer since us humans all have an inherent conflict of interest?? Did I get it?
Thanks for all the positive comments, its a refreshing post with comments, all the way around the table!
Hi madmom!…love your user name, by the way…I work for the Foundation for Excellence which is near Portland, and our CEO, Gina has been working with Folk Time…I’d be happy to provide support and consultation when and if you need it.
I think we need a support group for “professionals” who speak out and become ostrsized by their professional groups, The Survivor group is skeptical
and won’t really let us be part of that club, so maybe a club for the oppressors who left the system and want to be apart of the voices speaking out! OR as I said when I left the system, there were lots of people with lived experience at my farewell party, they joined me during my “speech: and I said to the audience remaining (the “professionals”…These are my peers , but they won’t let me in the club because I haven’t been locked up and forced meds so I don’t qualify…but these are the people I like to hang out with and I identify with! How can we join forces and be one?
Ann, “I’m budding in” as I was just so enjoying the more positive exchange happening here that so often we don’t see when “professionals” blog. As a consequence most doctors won’t blog here as the negative comments feel like bashing rather than dialogue. I don’t think things will change if we can’t have an open and respectful forum to dialogue and for others who may be curious and or wanting to learn and join the discussion can’t do so without attach. I’m not saying your comments in this chain or attacking but they are a little bit. That said I want to say I wish there were more doctors like Sandra working in the mainstream as that in and of itself would start to change “business as usual” we need the “good guys” working in the belly of the beast!
We have a national and international Foundation that was inspired by Whitaker s book, Anatomy of an Epidemic. A group of people with lived experience, researchers, doctors, providers, philanthropists all got together and started this Foundation almost 4 years ago. We have launched some important research (without big pharma $$) that has been published in JAMA, and have both educational funds like the new one with Mad in America (MIACE) on line CEU’s for all providers and family members…as well as Funds to support alternative models of treatment, Open Dialogue and residential models, the Hearing Voices Network, Intentional Peer Support….see our website and please please spread the word for more donors to work with us. Anything is possible. Given that the Federal Government is putting all their tax dollars into brain research, we can’t wait another 50 years for them to find or not find answers, we are trying to be a place where people can both design new funds for starting programs and/or donate to existing alternatives that we know work. Everyone should know about the Foundation and spread the word. http://www.mentalhealthexcellence.com. or contact me if you’d like to learn more. I’m the Senior Program Officer for the Foundation. [email protected]
Sandra, I want to thank you for sharing your insights and perspective on this troubling article in JAMA, the issue of promoting bringing back the “Asylums” for the supposed rising numbers of people in jails and prisons that have mental health labels. This is such a complex issue and so easy to jump to conclusions..As the blogger, “1 boring old man” brings to light that this so called conclusion may in fact not be based on accurate data. I also want to honor you for your openness in sharing your challenges and vulnerability in your personal struggle as you work to find and practice as best you can in a complex world with varying opinions. We need thoughtful doctors like you working in mainstream, ones who are open to new information, that can acknowledge maybe we’re doing things wrong and causing harm. Doctors who listen to what their patients say and are committed to really listening and working with rather than being “the expert”. Acknowledging that psychiatry is in fact not a science but could be an art form, might be the first step. I hope we all can be open to change and remain open to new information and evolve as we learn. What really strikes me is the almost knee jerk response by these members of U.Penn Medical Ethics to jump to this conclusion without an in-depth study of the prison data. (read 1 boring old man’s data that he sights!) And to think the solution is to return to the old State Hospital model (Asylums in this JAMA article) as if that was when things were better! Wow!
This lacks so much of what has been learned over the years post deinstitutionalization. Sadly community models were never funded, which was the supposed grand plan to be the next step when the State hospitals were closed. We certainly know that what helps is human connection, safe places where one can be allowed to go through difficult times without judgment, forced meds, but to have a place to sleep, food and people to talk with or not. A true Asylum in the words of R.D.Laing, not what these “ethicists” are calling Asylum. We know that being with others who have had similar experiences, models such as Peer Respite houses are reportedly benefiting those who have the option to access these homes, again, there are only a handful in the country due to lack of funding. While our federal government, representatives like Tom Insel director of the National Institute for Mental Health, has spoken out against the DSM and has acknowledged the medications don’t “cure” people, and in fact have been causing more harm, what has he directed new federal dollars to do? More Brain Disease research! Zero dollars are being allocated to community support services, true community support. The models are out there, Soteria, Open Dialogue, peer support, Hearing voices support groups, Emotional CPR, Housing First, .. So while we have many alternative models, they are all sorely lacking the necessary funding to be fully staffed and implemented nation wide. Small pockets of alternative models stand out with either private funding (so only the wealthy can access) or short lived pilot projects funded with grants that aren’t able to be sustained because there’s no federal or state money. I think we need to demand that our federal and state dollars be spent on what people who have survived the broken system are telling us… what they say worked for them and replicate more of that. I’m appreciative of having doctors like Sandra Steingard be willing to join with the alternative movement and take risks and speak up. I can imagine how difficult this is as one becomes marginalized by their peers and then often marginalized by the group they are agreeing with and joining. How can we be more welcoming?
As more and more doctors and providers of the mainstream system come out and speak up as Sandra is doing, we need to welcome and work together as allies rather than attack and critique. Where is the common ground? How can we build upon this and create a huge ground swell of both outrage at the “business as usual” and demand that funding is targeted to building natural communtiy support on all levels. This includes law enforcement, families as well as professionals, and peer supporters.
Pretty discouraging Ted! Seems the facts are pouring out & assuming Denmark has created new guidelines and protocols that reflect these new studies, it’s really really disturbing that the prescribers aren’t changing their practice, but instead it’s business as usual. Big Sighs….
That said, we can’t give up.
Rob, nice job summarizing and highlighting this conference! It was dark and light, inspirational at it’s best to hear from some of our most thoughtful thinkers in the field today!
Leah, thank you, I loved your thoughtful and hopeful blog here. We are all struggling with working hard but unfortunately, in our own silos, States, towns, organizations… . How might we integrate all the voices of advocates, people with lived experience, family members and providers to speak with a unified voice tell our stories of what works and have a direct line of communication to the legislators, to the country. We are stronger together than apart. We have so many fabulous organizations around the country. How might we all work together to demonstrate a united message? Create a true “national alliance” of people who are living the dream,? I keep envisioning one virtual network. Some have suggested we all join an existing advocacy group. If that’s the answer, which one ?
Thank you, this was hopeful after a week of feeling beaten.
Thanks Pat, I agree with all you say here….and the question still remains in an open, self referred, voluntary peer support settings, “freak out centers”, that sometimes (fortunately it’s rare) the peer staff are faced with threats of violence while someone is in the midst of their personal journey. This creates a “gap”, in our values and thinking when you are in the midst of someone yelling in your face and threatening to harm you….How does one hold true to the value of no force , “being with” and not run the risk of being assaulted, injured and traumatized? Assume you’ve taken the path of least resistance already, and of course have tried to deescalate the situation, meaning, stepped out of the energy force, opened the door and asked the person to go outside, etc… leave…walk away, take a break, they continue to escalate. Do you wait to be hit? or call the police? These are some of the real life situations that respites may or are actually facing today. Often drug induced states of violence =Methamphetamine’s, alcohol etc….Calling the police is force, trauma for everyone in the setting to witness etc.
At this point we call police (in our Respite) While these occurrences are quite rare, they have happened. Sera says in RLC-MASS…they would have a “critical incident review”….I’m surprised they have never had to actually exercise this at their respite, we’ve been open three plus years and have had to do this and it’s awful, but at some point I think we all have to accept consequences for our own behavior and intent to harm another is not acceptable in any environment, home, streets etc. no one is employed to be assaulted and harmed so that another can work through their internal struggles. Being faced with calling the police doesn’t feel like an acceptable outcome either….we are still looking for answers to this question.
Sera, your question re: Danger to Self (DTS) =suicidal thoughts, feelings, intent….to me is existential on a deeply individual and personal level and does not belong on the menu of health care per se. That said, I find it ridiculous that people are put in locked care for DTS. And to add insult to injury, they are “treated” for “depression” which of course is how the issue of health is pulled in and then you go down the path of the medical model which of course justifies the use of anti-depressants to force the person to treatment….it’s all insane, and shows complete disregard for individual states of being, the human experience of moods and ups and downs…. This of course gets complicated when states of self harm are possibly being influenced/induced by substances, illicit and/or prescribed…then the “health care” issue veers it’s ugly head again…
I think the question of drug induced states, lets just limit the question for a moment to drugs like Meth, which are a real issue in our community and often present with extreme states of violence and may last for days or even weeks…these drug induced states are huge challenges when faced with criminal charges, police interventions OR “health care:”=lockem up in psych hospitals…..I keep coming back to this as I have found that these are the circumstances that we haven’t been able to resolve without police intervention which equals force and causes great trauma to all involved.
Thoughts, suggestions are welcome.
While i’m grateful for this book, I just wish the title of the book more innocuous, less extreme/radical, so that mainstream psychiatrists might be more inclined to pick it up without thinking that it’s eerily some extremist rants against drugs and them. I think this is such important work, and messaging and how its delivered is critical so as to get the facts out and change these practices, being marginalized as extremists and radicals, anti psychiatry and liberals doesn’t get the message out, but rather keeps us preaching to the choir
In the absence of any ” medical professionals ” stepping up to the plate, we have Will Hall coming to speak with medical providers and all community members on Coming off psych meds, using his manual of Harm reduction. I asked Will to bring someone with an MD so that maybe, just maybe the local psychiatrists would actually Take in this training to promote a change in their current practices. We need more doctors to come out of the closet and take risks with us, to speak up, they too must be seeing the harm!
I think with the media Tom Insel/NIMH questioning long term use of drugs and the dsm5 ( not that I believe for one moment that he is an ally to the human rights movement) it has worked to our advantage to speak up more from the inside, at this stage in my career I’m more willing to say ” let them fire me” for speaking my truth …
I was inspired by Faiths blog here initially as it resonated to create more community dialogue, I liked the sound of “talking over fences”. I think this might be how we move forward is finding connections with ” the other side”‘places o f dissatisfaction with the system that are shared. One example might be Family members, who have had a strong voice, they aren’t happy with the system either and many hate seeing their loved ones handcuffed by police. And put in seclusion rooms and medicated, Now many are at a loss as NAMI is hearing the criticism of the medical model and I’m sure is at a cross roads ….just one example…many are seeking answers. Of course most want medical answers, but meanwhile there aren’t any, I just believe there’s opportunity in having these dialogues in our communities to begin reshaping systems. It’s so true what Richard Lewis says, that the recipients of these public services are often the most vulnerable and poverty doesn’t create choices to allow people to go to “alternative healers” so it’s the public community mh clinics that need to better respond to the human experience in a humane manner
Andrew, I couldn’t agree with you more! As another ally working within…I am comitted to this population who indeed are in the socio-economic group of often poverty and without family/friends or natural supports and resources…change happens from within
Faith, thanks for having Faith in change! I believe that if you see each person as a human being,as you stated you did when you teared up …. there lies potential that we can all connect at the “community table” to acknowledge what’s not working, explore alternatives and continue to evolve, including the traditional system workabees. It starts with that one person who exposes their questioning, discomfort, doubts, disagreement and this can spread to influence other colleagues. I’m watching this take place now at our county mh system and I see the change a coming! It definitely has been fostered by survivors speaking up, our Peer Respite House providing a true alternative for people to get support has been, and continues to be, a living example of mutuality rather than power dynamics, I’m the doc/ therapist, oppressive “do as I say”.
I also agree that this dialogue must be lead by survivors, having allies join, yes but the people with lived experience must take the lead!
Thank you for summarizing this all so clearly. You did an excellent job and a piece here that can easily be shared, forwarded to those either unaware or skeptics. Finally, there’s some crack in the iron clad “medical model” which pharma has been in complete control over . Sad to think that with all the personal testimonials by survivors who tell their stories that the yweren’t being heard, listened to, by the majority of doctors, even with their living real life examples ! What I’ve been noticing is that since Whitaker has been on the road with his speaking engagements, he has coasted doubt in some, now with Insel ackniwledgment there may be some actual movement and change in practice by the prescribers. I’m hopeful the doctors will unite and start to at least put together new protocols for using anti psychotics, it’s at least a start! Meanwhile, I think Insel is still going to focus NIMH dollars on medical research to contine the search to support brain disease as the answer. Something tells me he hasn’t converted
Excellent work! Thanks for speaking out! What state/city are you working in? Hope you continue to post your findings.
Sera, thank you for your amazingly articulate honesty . I wish you’d send this to the NYT editorial as thus would make a great letter to the editor ! While I agree with Darby that Pies won’t be joining you in dialogue here on MIA, as there would be no ” pie” left….maybe he’d meet you face to face. You’re a powerful mensch!
Thanks for writing this and speaking the truth in the face of such total minimizing and blindness by those who I’m sure truly believe they are doing good for others, the truth needs to be spoken again and again and again
Wow, this great work and finally some “big ears” listening! The UN, human rights, this is where we should be heard! Thank you !
Send me an email or give a call…
This is a very important story that you have shared! Thank you for telling it so clearly. I hope this goes viral so many others will read this and have the awareness of just how dangerous this self screening tool is! I had no idea it existed! so thank you for posting this important blog.
ps…I just read your comments to my blog in November and replied…
Wow, you have a lot of worries, I just re-read this after reading your comments for the first time.
( I returned after reading your post today. “….60” which I appreciated you writing very much.
I hope now that we have spent a week together at Esalen, you have a better sense of who I am and where I’m coming from. And yes, this description of creating 2nd Story Respite shows the intricacies and challenges of working an alternative from “within” an existing system. Attempting also to acknowledge that some people may in deed choose to take medications and that we are not here to judge or tell people what they “should” or shouldn’t do but rather to provide choices. And the end of my story was not “tacked on” but rather in closing, a bit of a window into how I do think of the state of the system of the medical model.
In reality 2nd Story is an alternative to the hospital, it attempts to attract people before they go to a hospital. It’s not Soteria House. I wish we could have a Soteria House in Santa Cruz, and maybe one day that wish will come true.
I also recognize that changing the system is a huge undertaking and that creating a place like 2nd Story, and maybe taking baby steps toward change is a way to actually create change by “doing” and creating a place for people to have new and different experiences, these experiences are profound game changers….
I’m not at all one to take the issue of medications lightly, and the story I shared about someone coming to 2nd Story post hospitalization what intended to both highlight what we know typically happens at the hospital, that people are started on anti-psychotic medications, often multiple medications as the young man I spoke of….once he got to 2nd Story he was able to reflect on his treatment and judge for himself. I was careful not to judge….it’s his experience and his choice not mine or the peer staff….
Anyway….hope maybe now you understand a bit more….and meanwhile, I did take your concerns seriously regarding our website and the fact that Peer Respites around the country are indeed known as alternatives to the hospital, and I have asked the staff to review this in light of the concerns you raised and that we need to change how we describe what we do. As the fact is we are an alternative to hospital, pre admissions….and I think we can clarify that.
The times they are a changing and real change happens, but sometimes it’s slow. I do know what happened in Loren’s lifetime, and I also see what’s happening now….Soteria never died, and while it went under ground (comment edited at commenter’s request), they (the pharmaceuticals) are now being seen for what they are, corporations without soul, no science behind their “studies, falsified studies etc…you know all this….no or positive results…and what are the people doing? Looking desperately for another path. You say second story ” is only reaching people who are trapped in the system”. Well, firstly that’s not true and secondly the people trapped in the system deserve support and a way out too, we can’t just abandon them! There’s so much work to do, both to help those who have been harmed as well as show a new ( or old, I.e. Soteria way….). We must move forward, take with us what we know is good and leave the bad behind, we can do this by focusing on what does work and continue to show the seekers of truth…imhavevfaith it will catch on, it’s already happening. Look at Vermont! The State is funding Soteria! How much more “system” can you get, to stand up and actually write demands for non coercive, non medicated solutions? That’s a huge sea change!
I think the movement has come along way and of course I agree it’s not far enough…Whitakers book has really shaken the foundation of psychiatry and big pharm. change doesn’t happen overnight! But the aftershocks are continuing to reverberate….I did bring Whitaker to our traditional mental health community and he met alone with the doctors, and then with the entire community of traditional providers, people who have received services and family members, many were quite noticeably shook up by his presentation, many many people from all groups thankedvme for bringing him to speak. a year after I’m seeing the conversation between doctor and client change. There is now a shared dialogue and decision making about what approach to take, meds, no meds, work with me to help me get off the meds etc. traditional community MHCS providers are adding programs that are run by people with lived experience, states(Vermont), counties are funding new models for “first break” experiences, like Soteria, PREP which isn’t quick to label or use medications….acknowledging the hard work from the trauma survivors theyve changed the landscape, some of the doctors are now questioning the drug companies,that’s radical, their clients are starting to question the meds, thats being informed, people with lived experience are setting up their own support systems and educating each other, living by example,. “Peer ” respites are getting funded. As these new models of compassionate care and support continue to emerge, the paradigm starts to shift…what actually makes sense for those needing and wanting support and answers, shelter from the storm, is already taking on a life of its own, self reports of what really is helpful is powerful. The world of psychiatry knows the drugs are killing people, causing serious life threatening illness and disabling people, this is catching on and spreading like wild fire. While you criticize SAMHSA, we have to also recognize our allies, no one person or group has all the answers or is THE spokesperson, or even pure, but SAMHSA’s willingness to fund some of these projects for exploring transformation helps to get the word out in the main stream. Just as NIMH funded the first Soteria. This doesn’t make these organizations perfect, or even ok, yet they can be vehicles that contribute to change. We all know better, ( consider the MIA audience here, preaching to the choir, but at least samsha has been willing to back up good ideas with start up pilot money.
Remember my analogy to the civil rights movement? We need all allies to join the cause and not throw out the baby with the bath water! The ” us against them” is further stigmatizing and labeling, how about welcoming all who care and together we make music, loud beautiful chaotic music.
Looking forward to our talk!
I am on my way to MHCAN, hope I get to meet you in one hour!
Hi daniel, so exciting to know you are filling in for Susan for a year! You are so correct in your intent to bring Soteria Alaska back to the true intent of Loren’s design and purpose for Soteria. I of course agree, having worked at Soteria san Jose, and now having spent 30 yrs in “the system” that the model of Soteria can’t work for the “chronic” patient that has been on meds for years. As Rigel said above, our respite house, second story, has become a community that provides open minded space for guests tomexplore themselves and talk with other peers about their process and journey. the folks who have been in the system are discovering from the peer to peer model that hope, is possible and they are learning about choices, becoming empowered and some are choosing to explore alternatives in a well informed process, similar to will halls, harm reduction model.
I love that you are making headway with the psych ER ‘s to send first break young folks, sounds like we finally may have a Soteria again in this country. I’ll send your blog to john Bola and Loren’s wife, john may want to get involved for the research part.
Will I see you at esalen this November? Hope so
Keep up the good work
And john Bola has some outcome data on Soteria. We will have outcome data from or samsha funded peer respite.. But clearly some federally funded research could go a long way to ake a point