Monday, May 10, 2021

Comments by Faith Rhyne

Showing 247 of 247 comments.

  • This morning, I was searching the phrase “narrative recovery” and Google threw my own words back at me.

    Addendum:

    I appreciate the real world, all the different ways people make sense of who they are and what is happening to them within their lives.

    I think most people pay attention to what is going on around them.

  • Thanks, Duane.

    I have had 10 metal bands follow me in the past 2 days. They have names like Countless Goodbyes and The Words We Use.

    I sent a message to the family, offering condolence and letting them know that I was trying to persuade the band Memphis May Fire to say something about Keith at one of their shows, to honor him and to raise awareness of what happened and why.

    I don’t know if I’ll be able to persuade that, but I’m not sure what else to do. I could write a nice little coherent piece for local advocacy networks, send off a letter to the editor. I should do those things. I tried to do those things.

    I feel like in my current head and heart space regarding this issue, it seems like I might be most useful talking to metal bands.

    Thanks again…

  • Involuntary Commitment And Court-Ordered Treatment

    ——————————————————————————–
    After a great deal of study, the NAMI Board of Directors in 1995 approved a policy on involuntary commitment and court-ordered treatment. This policy was developed after a year of analysis with input from grassroots members around the country. The final text, approved by the board, is printed below.

    In passing this policy, the board re-emphasized its belief that “the availability of effective, comprehensive, community-based systmes of care for persons suffering from brain disorders will diminish the need for involuntary commitment and court-ordered treatment.”

    We also agree that court-ordered treatment should only be used as a “last resort.” On the other hand, the board is cognizant of the fact “that there are certain individuals with brain disorders who at times, due to their illness, lack insight or judgment about their need for medical treatment.” We believe the following policy does a good job of balancing an individual’s civil rights with society’s obligation to provide kind and compassionate care to those in need.

    Policy On Involuntary Commitment And Court Ordered Treatment
    Approved by NAMI Board of Directors on October 7,1995
    The National Alliance for the Mentally Ill (NAMI) believes that all people should have the right to make their own decisions about medical treatment. However, NAMI is aware that there are certain individuals with brain disorders (also known as severe mental illnesses) such as schizophrenia and manic-depressive illness who, at times, due to their illness, lack insight or judgement about their need for medical treatment. NAMI is also aware that, in many states, laws and policies governing involuntary commitment and/or court-ordered treatment are inadequate.

    NAMI, therefore, adopts the following policy:

    1.The availability of effective, comprehensive community-based systems of care for persons suffering from biological brain disorders will diminish the need for involuntary commitment and/or court-ordered treatment.

    2.Methods for facilitating communications about treatment preferences among individuals with biological brain disorders, family members, and treatment providers should be adopted and promoted in all states.

    3.Involuntary commitment and court-ordered treatment decisions must be made expeditiously and simultaneously in a single hearing so that individuals can receive treatment in a timely manner. The role of courts should be limited to review to ensure that procedures used in making these determinations comply with individual rights and due process requirements, and not to make medical decisions.

    4.Involuntary inpatient and outpatient commitment and court-ordered treatment should be used as a last resort and only when it is believed to be in the best interests of the individual in need. 5.States should adopt broader, more flexible standards that would provide for involuntary commitment and/or court-ordered treatment when an individual:

    (A).Is gravely disabled, which means that the person is substantially unable, except for reasons of indigence, to provide for any of his or her basic needs, such as food, clothing, shelter, health or safety, or
    (B).Is likely to substantially deteriorate if not provided with timely treatment, or

    (C).Lacks capacity, which means that as a result of the brain disorder the person is unable to fully understand or lacks judgment to make an informed decision regarding his or her need for treatment, care or supervision.

    6.Current interpretations of laws that require proof of dangerousness often produce unsatisfactory outcomes because individuals are allowed to deteriorate needlessly before involuntary commitment and/or court-ordered treatment can be instituted. When the “dangerousness standard” is used, it must be interpreted more broadly than “imminently” and/or “provably” dangerous.

    7.State laws should also allow for consideration of past history in making determinations about involuntary commitment and/or court-ordered treatment, since past history is often a reliable way to anticipate the future course of illness.

    8.An independent administrative and/or judicial review must be guaranteed in all involuntary commitment and/or court-ordered treatment determinations. Individuals must be afforded access to appropriate representation knowledgeable about brain disorders and provided opportunities to submit evidence in opposition to involuntary commitment and/or court-ordered treatment.

    9.Responsibility for determining court-ordered treatment should always be vested with medical professionals, who, in conjunction with the individual, family, and other interested parties, must develop a plan for treatment.

    10.The legal standard for states to meet in order to justify emergency commitments for initial 24 to 72 hours should be “information and belief.” For involuntary commitments beyond the initial period, the standard should be “clear and convincing evidence.” Involuntary commitments and/or court-ordered treatment must be periodically subject to administrative or judicial review to ascertain whether circumstances justify the continuation of these orders.

    11.Court-ordered outpatient treatment should be considered as a less restrictive, more beneficial, and less costly treatment alternative to involuntary inpatient treatment.

    12.Efforts must be undertaken to better educate justice systems and law enforcement professionals about the relationship between severe brain disorders and the application of involuntary inpatient and outpatient commitment and court-ordered treatment.

    13.Private and public health insurance plans must cover the costs of involuntary inpatient and outpatient commitment and/or court-ordered treatment.

    …gee, it’s not surprising at all that portions of the language in the Murphy bill is copy/pasted right from this, which was probably copied directly from the Treatment Advocacy Center.

    ugh.

    Thanks for posting, Duane.

  • I agree that NAMI has been and in many ways continues to be an agent of forceful and coercive treatment and distorted biomedical paradigms, which have ultimately led to the harm and death of many, many, many people…and it needs to change it’s name and almost everything about it’s messaging.

    It’s the National Alliance on Mental Illness. Not the National Alliance for Recovery and Support or the National Alliance of Mothers of Wonderful, Crazy Kids

    It’s an alliance on Mental Illness.

    It’s a shame that to be an effective advocate for policy or service in some places, a person has to be diplomatic with NAMI and some NAMI branches are really quite cool, except for the cultural indoctrination into a severe and persistent medical paradigm.

    It is mind-blowing to me that I am expected, as an advocate, to be able to partner with people involved with NAMI, to walk these lines.

    I like them as people. I respect them as people. I think that, as people, they make an effort to do good work.

    The whole NAMI thing though…I mean, really, I have to be involved with NAMI in order to do advocacy work here? Even though NAMI contributed to the harm of my family?

    Am I just supposed to act like “Oh, it was all my problem, because I’m a person with a mental illness.”

    Yeah, right.

    You know what I genuinely cannot stand about the whole NAMI scene is that no matter how you have recovered or what you believe of yourself and the reasons you struggle…well, you’re always a person with a mental illness in their book.

    It’s terrible.

    Nonetheless, I don’t, as most people know, take an oppositional position to individual people – especially those who believe – because they have been told – that they are doing the right thing.

    Update on trying to get a neo-metal band to honor Keith Vidal, three other metal bands have followed me on twitter recently.

    So, that’s interesting…

  • Copy_cat
    Comment:
    I called NAMI and they sent me an e-mail about the need for Crisis Intervention Team (CIT) officer Training and the usual stuff about access to “care”.

    A kinder gentler softer psychiatric arrest ??

    Is that the plan ?

    _____ you want to hear what a local NAMI rep. responded to me with?

    “I have attached information about Crisis Intervention Team training here in Buncombe county. It begins with the deaths by police shooting of 2 young men within one week and the force of the community action.

    Here in Buncombe county, this would likely not have occurred.

    I have been intimately involved in CIT since its inception. 20% of sheriff’s deputies, APD officers, Detention Facility officers, school resource officers and officers from other counties have been trained by us since 2007. We have another class of 35 coming up in March.

    In a crisis, whether encountered on the street, in a home or elsewhere, a 911 call should request a CIT officer. Mobile crisis teams are also trained to request a CIT officer.

    There is some hope and help here in our community.”

    Yup. All about how good our CIT officers are, never mind that cops can still come to your house, terrify you and then stuff you into a car against your will and never mind that a person with a mental health diagnosis was shot and killed or that it took two people with mental health diagnoses being killed by police here before all these special trainings were rolled out.

    Sigh.

    Hey, I just sent Kermit a follow up to this post – sort of an overly long-winded advocacy process and reflection piece that ends with me tweeting to Memphis May Fire for lack of knowing what else to do.

    I hope he’ll post it. It’s called “Memphis May Fire, Keith Vidal, and the Effort to #SaySomething”…

    Thanks for posting the video. High fives!

    Sadly, a kid playing drums with dog eared cymbals wearing a shirt that says shut up is probably the picture of the teen with schizophrenia these days.

    That’s why I posted the lyrics to the song, so people would know what he was pissed off about.

  • I just sent the video to whomever looks at Memphis May Fire’s facebook messages…which is probably nobody. I wrote a good message, too. I’m going to go find them on twitter and see if I can tweet to them to check their facebook messages.

    Wouldn’t it be fantastic if they dedicated a whole show to Keith Vidal, if they talked about how he died, if a whole crowd put their fist in the air for him.

    They go on tour next month. Maybe I could find their tour management company’s contact?

    I tried to find out if the state-wide mental health advocacy networks were doing anything and haven’t heard much. Local people haven’t been in touch.

    I’m moving on to Memphis May Fire, I guess.

  • Hey, Copy_cat…here are the lyrics to Memphis May Fire Alive in the Lights:

    MEMPHIS MAY FIRE LYRICS

    Play Song
    “Alive In The Lights”

    From the beginning I knew I was different. I embraced it, but you didn’t. Your normal life, 9-5, it’s just not for me. I need to feel alive!

    I won’t fall like the rest of them, they’ve come & gone with the wind. I hear the doubt in the back of your mind but still I’ll see this through to the end.

    Maybe if you paid more attention, asked more questions & actually listened you would see this is not just a dream, but a path I’ve chosen that means everything to me.

    Don’t you see the minds that have changed? Do you see the lives that have been saved? Don’t you care to see the difference I’ve made?

    Listen closely, the highways call my name. Don’t you see this is my everything? It may not seem right to you & you might not approve but it’s real. This is the only thing that makes me feel.

    What more do I have to do to finally prove myself to you? What is it that you need to see to finally believe this is who I’m supposed to be?

    Most days I feel like your punching bag, but I will never let it hold me back. I just wish for once you knew how it felt to be brought down lower than everything else.

    Don’t you care to see the difference I’ve made? Listen closely, the highways call my name. Don’t you see this is my everything? It may not seem right to you & you might not approve but it’s real. This is the only thing that makes me feel. This is who I am! This is my life. I come alive in the lights! I come alive in the lights.

    What will be written on your tombstone? You sat behind a desk. You had no backbone. What will be written on your tombstone? You sold your soul, grew old alone. Would you prefer that I become a lifeless, hollow shell such as yourself? Would you prefer that I give up my dreams & lose all hope just like everyone else?

    Don’t you see the lives that have been saved? Listen closely, the highways call my name. Don’t you see this is my everything? It may not seem right to you & you might not approve but it’s real. This is the only thing that makes me feel.

    !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    anthemic. Did his parents ever read the lyrics? Did they ever ask him why he loved that band so much?

    http://www.youtube.com/watch?v=aqWLkKBB3jQ

    This song is badass. It makes my chest feel like it’s gonna explode.

  • I agree, mjk. This needs to be in a play.

    Does anyone here know how to write and produce a play?

    I’m sorry I’ve not been back to comment. I’ve been walking around pneumonia-ish and reading along with the comments, thinking about how protests don’t seem to work anymore and about the “mentally defective” as socially disposable and what a crime and insult it all is.

    Thanks for posting the links. Yeah, getting to the pdf of the legislation is a little squirrely. Go figure…

    mjk – I’ve wanted to make a play for the past couple of years.

    For a winter project, if you wanted to send one another segments of playwriting back and forth, please email me. Stephen, you can be in on it, too.

    I think an amazing play would be more effective than a protest…though maybe there could be a protest scene, when people are speaking truth to power about their wounded lives and the smug psychiatrists just walk by, looking slightly bemused…like they did in Philly.

    mjk knows my email. faithrhyneATgmail.com

    I want to make a play.

    If we worked on it, it would get done and then it would exist.

    madlove.

  • Thanks for this, Copy_cat:

    I refuse contact with and treatment by any psychiatrist, psychologist or other mental health practitioner as these practices, according to my philosophic and/or religious convictions, do not adequately or properly diagnose and such diagnoses can constitute a false accusation about my behavior and/or beliefs and practices, and are stigmatizing and therefore a threat to one’s reputation and physical and mental well-being. Any of their treatments, given against my expressed wish, are an intrusion upon and thus an assault on my body and constitute, in my view, criminal assault. Any involuntary hospitalization or commitment is a violation of my right to liberty and would therefore constitute a false imprisonment by all those advocating and authorizing such action, against my consent and wishes. If in the future, I am accused of a crime, then I direct that I be subject to due process accorded to the criminally accused and not subjected to psychiatric or psychological assessment, processing, profile, confinement or treatments.

    …and then they will tell the person that due to them having a “mental illness” they are unable to make such decisions or determinations for themselves and may well characterize the effort to be self-determinant as a “symptom.”

    It’s a maddening bind.

  • Hey Laura – I’m so glad you survived!

    It’s fascinating to me the way that life feels like it starts over after psychiatry and every year is full of these leaps and bounds. I’m so glad you got to sit and reflect in that beautiful place…and that you get to see it again, new every time.

    …no need to reply, just keep writing!

    xo
    FR

  • hells yeah for the honesty, Chaya…

    “Haven’t most of us had moments of wanting to die so others would finally value us, notice how much pain we’re in, name our special qualities, express how much they loved us, regret their behavior that hurt us? Isn’t it humbling to admit we need our loved ones to tell us how much we mean to them sometimes, how much they care?”

    Yup. This is so true. Glad you’re around.

    I loved this sentence: “Sometimes every day feels like a suicide attempt, a stomach pump, a near death experience and the combination of feeling further damaged and a stronger sense of purpose.”

  • :/

    “The cards can be obtained at a NAMI office, or at the Police station.”

    In a period of pressured acquiescence during which I identified myself as having bipolar disorder, I went to renew my driver’s license and when the clerk asked me if I had a mental condition, or some such language, I said, “Well, yes, I have bipolar disorder.”

    The clerk looked at me for a minute and then said, “You’re not going to want to have that on your record. Let’s leave it off.”

    At the time, I didn’t know what to think.

    I don’t know what the clerk thought the implications might be, but they were not good.

    I can see the reasoning behind this – and find it unfortunate. I can imagine how this idea was formulated. Some person thinking about worst case scenarios and people not knowing where they are or not being able to communicate their needs under whatever circumstances might be.

    There is a fellow here who is houseless and has severe Tourette’s, and he does react violently if people get too close to him. I know a person with PTSD (several actually) who react combatively in interactions with anyone in a uniform – because they’d been previously assaulted by police. So, I can see where it might be good to have a card that says, “Hey, I have this issue and you need to respect that and treat me accordingly…”

    However, diagnosis and medications? Like Tom, I can see where having one’s medications written down would be good, per the potential for drug allergies or dangerous interactions…but, really, to have all this tied to a diagnosis of mental illness and psychiatric treatment regimen is disgusting.

    Shouldn’t police – as “public safety officers” – be able to handle a situation where someone isn’t able (for whatever reason) to self-advocate or explain what is going on with them?

    I know a person who is so over-medicated that they do not know which meds they take and when and, most days, can barely communicate.

    …it’s foul, what this plan communicates…which is that anyone with a diagnosis is liable to not be able to communicate, that they cannot advocate for themselves, that they may be likely to have run-ins with the police.

    What is the difference in the way that police interact with people who will show White Cards? What is the training around them? What’s the protocol and how does it differ from “crisis intervention” in which people do not hold White Cards?

    “White” cards? That’s an interesting play on color and suggestion…

    There are a lot of cultural factors that determine who’s going to have these cards, and who will get them voluntarily and who will be forced to…

    Thanks for posting about this, Michael…very unsettling.

  • I have, Corinna! I actually almost commented to say hi and let you know what was going on here…but, instead I just thought about things.

    I actually think it was the email blast from Wellness Wordworks that really helped me to know that it was important that c/s/x folks get actively involved in the organizing of these dialogues from day one.

    It’s interesting, because as an organizer (and researcher, since I am working on doing my MA project on this process and its outcomes), I can’t really have an agenda other than creating space for dialogue – though there have been a couple of alternatives-oriented dialogues held nationally under the auspices of Creating Community Solutions. I think one in Portland was called Rethinking Psychiatry.

    Anyway, yes! I will send you an email and definitely look forward to hearing from you on your experience with the dialogues initiative in KC.

    Thanks for saying hi and sorry I didn’t comment on your pieces re: participation in the dialogues. I just haven’t been too comment-y lately…I mostly just read things and then think about them.

    Like I said though, your efforts out there definitely contributed to the vision here…

  • Thanks for sharing your experience and insight, Richard and for your tireless work in challenging bad ideas.

    I’ve talked to people at the organization I work for about doing an in-house training on “alternative approaches to psychosis” – to create the opportunity for people to consider these states differently and to perhaps understand them in a different context. I have talked about meeting with the psychiatric service providers to discuss the role of psychiatric drugs in recovery education and to share recent research on the “atypical antipsychotics” and materials on shared informed decision making between prescribers and people who choose to use these drugs, and on ways to support people in exploring other ways to manage their difficult times and experiences.

    …and they say, “Oh, yes, that’d be good…” – but, development of these opportunities takes time and support and the nurturing of a willingness to create spaces for staff to learn more about new developments in theory and ethical practice…and so it stalls, mostly because people are so busy keeping up with the day to day demands of working within the system that they are unable to make time for considerations of how things may be done differently.

    I remember someone mentioning how helpful it would be if there were training materials made available to people on these subjects, constructed in a way that was accessible and appropriate for use within systems interested in providing recovery-oriented services.

    That’d be extremely helpful, and would create consistency.

    Most systems are not set up to have the capacity to meaningfully provide alternative supports. While there are plenty of valid arguments against peers, peer support (when in strong fidelity to the practice) does have the potential to be helpful. Of course, peer support and fidelity to the practice is a whole ‘nother can ‘o worms, a hundred other essays.

    I appreciate your passion and perseverance in working within the system and also your recognition that support for people who attempt such work in a desire to be a catalyst for change is absolutely vital.

    I am probably not going to be working in the system in the capacity of a peer for much longer…because, for someone who is intelligent and experienced and who has a strong sense of ethics, it is demoralizing and, to be frank, depressing.

    I have only stayed so long as I have because I know that if I were not there, the people who come the center where I work that struggle with profound alienation, voices, paranoia, and all the trappings of years of being treated with neuroleptics…well, they’d have nobody to talk with about the messages they feel they receive, nobody to talk with about ways to “move through” difficult extreme states, nobody to share the reality of their experiences with…and thinking about them I want to stay, because to other practitioners these experiences are just the detritus of a severe and persistent mental illness and people see psychiatric drugs or a referral to an ACTT as the only way to respond…and yet I know that is not true.

    However, the amount of good I am able to do in a part-time position, spending an hour a week with people, is limited and so…and so…and so…

    That’s why I want to figure out how to finish this degree and get another one, find ways to support entire organizations in making alternative responses to psychosis and extreme states available.

    Not only is it amazing to see the healing potential of simply being heard and having the power and struggle of one’s experiences affirmed, but compassionate and dialogic approaches may cost less and have better outcomes.

    I am glad there is more and more research emerging that supports this fact.

    Eventually, the agencies that structure policy and practice protocols (ahem, SAMHSA) are going to have to take a strong stance in making these approaches available.

    I don’t understand why they wouldn’t. Yeah, there is plenty of pressure to adhere to the biopsychiatric paradigm – economic pressures, incentives – but, damn, why aren’t people more hopeful, more inspired, more excited that we seem to be at the edge of untangling what madness is and what it is not and, finally, what may truly help people = connection, empowerment, trauma healing, strategies to understand and navigate personal sensitivities and self/world conflicts with agreed upon reality, self-determination…

    There is so much potential.

    I don’t understand why people are content to accept the hopeless miasma of the simplistic biopsychiatric model and why they aren’t enthusiastically promoting the support and expansion of alternatives.

    I guess that’s my naivete again…

    Thanks again, Richard. Hope you enjoy the day…

  • “I have the sort of personality that cannot tolerate working from the inside, so I would rather build bridges from the outside. I am currently trying to figure this thing out: where to invest my resources, energy, time, and money, to make a difference.”

    I appreciate the direction of your thinking here, Tom – recognizing individual preference and strengths, and trying to figure out how to use those in working with others toward a common goal.

    I have noticed in some activism movements there is this pressure to do things in a certain way, to stick to certain models of “what activism is” and very few opportunities are created for people to participate outside of those models. I am not saying that this tendency is always explicit – in people saying, “You have to do it this way if you want to be a part of things” – it’s more of an implicit message, “Like, here is what we are doing, if you want to help, you can do this part we’ve set up or that part we’ve set up…” rather than asking people, “What do you love to do? What interests you? Where is your passion in this? What are your strengths?” and spending time with people to help them find ways to contribute that are sustainable and meaningful for them.

    I think you’re correct that a “successful coordination” from the inside and the outside is an effective strategy and that seems to be what is happening, though without a clear structure or an established strategy with agreed upon roles, etc.

    Ted’s observation of the need for public engagement and raising awareness is spot-on. As for how that “looks” and might be best accomplished…well, there are endless conversations that have taken place on that matter and no clear conclusion has been drawn.

    I have found value in Bill Moyers’ book Doing Democracy, which lays out some basic activism strategies highlighting the necessity of different approaches. It’s pretty basic, but definitely gives some insight into activism “roles” and ways for people with different strengths and interests to work together and also gives insight on why movements struggle and fall apart. It is a little entrenched in 20th century American models of activism, but so are many activists.

    Thanks for responding and thinking in the direction of collaboration. I’ve developed into more of a hybrid activist myself, who really enjoys crossing lines and creatively pushing boundaries, trying to find human-to-human space between people.

    I seriously have a dream of sitting down in dialogue with people like E Fuller Torrey, because it’s fascinating to me how worldviews are constructed and how we, as people, can be these earnest little kids who want to be the “good guys” and as we get older what that means just gets so distorted and disparate.

    Of course, it might be tough to find human-to-human space with the likes of Torrey, since in his expressed worldview people with my psychiatric label and history are barely worthy of human consideration or respect, as we are seen as having limited capacity to “reason.”

    Anyway, thanks…

  • Hi Ted –

    Thanks for saying hello here and for being a part of the strong voice of the psychiatric human rights movement in my mind.

    As I see it, the goal of these dialogues is to engage the public…and whether or not that is the outcome has a lot to do with how they are organized.

    We’re trying to approach this an opportunity to engage the public in these considerations and – given that this is a rather small city – we might have some success in initiating more public awareness of community-identified needs, concerns, and possible alternatives than some larger cities.

    I actually edited out the part of the comment I made re: “employment is a choice” – as I had somewhat mis-framed it in a way that wasn’t entirely fair or accurate.

    This statement was made to me when I was expressing the sense of ethical conflict I – as a person who opposes force and coercion -had in working for an organization that held a training on involuntary commitment procedures and the statement was made as if to say, “That is how things are right now and you don’t have to be here if the ethical conflict is too great for you to be comfortable with.”

    Nobody said I would be fired, but chances are good that if I challenged policy and procedure too heartily, that I probably would lose my job…because organizational development is outside of the scope of my role as a peer and there are specific ways that one must go about changing policy and procedure.

    Reality, reality, reality…it can be a frustrating thing to contend with.

    “If we don’t attend to changing the minds of the public, if we don’t get out of the little bubble of the mental “health” world, we are going to wake up and find a lot of us, especially survivors like me but kind mental “health” professionals too, in a grim situation.”

    That is a reality.

    Thanks again for saying hi, and for reminding me of the reality of E Fuller Torrey. I guess now that NAMI has made gestures of distancing themselves from Torrey (e.g. having Whitaker speak at the national conference, rather than inviting Torrey), he’s moved on to courting popular media…which is frightening. The scary thing about Torrey and Jaffe is that they seem to actually have the privileged skills and knowledge (e.g. they can write a well-reference and formatted report) to impress upon people that they know what they are talking about…even if they don’t.

  • Hey, Duane – Thanks for saying hi.

    I agree that the damage done by reductionist and formulaic treatment is – in moderate terms, problematic…honestly speaking, grievous.

    Which is why I feel like I have to try to do something.

    🙂

    It’s not people like me who are changing things, it’s people like you and me and *a whole lot of people* – at every level, working with a lot of other people, building on the work of people who have come before us…that are *trying* to change things.

    It’s people with signs and people in suits and people in plainclothes meetings over coffee and sitting in front of their computers and talking with their neighbors.

    Thanks for reminding me of the power of doing nothing…that is actually something I remind myself of a lot, in pacing and in timing.

    Sometimes, I get caught up in wanting change to happen immediately and I have to remember that anything that is lasting takes time to build. These systems and the ideas that drive them took time to develop and they take time to change.

    Thanks for being out there…

  • I have a bee in my bonnet re: my assumption that the intention is to help. That’s not always the case. In a a lot of situations, the intention to keep a person “safe” or to keep other people “safe” from danger that presumed inherent in particular struggles, especially those associated with clinically identified psychosis. I’m not going to bother with the quotation marks here.

    This motivation, that of keeping a person safe from a danger that is assumed, often comes at the cost of individual liberties and the goal is not to help a person, but to constrain them in their capacity to act – either by physical restraint or chemical restraint.

    It is a difficult reality and I do have a chip on my shoulder.

    It’s there for a reason though.

  • Thanks for your powerful articulation of purpose and radical revisioning, Andrew. The thing that is heartening to me is that this system is built on ideas and while it’s true that those ideas have become ossified in the form of billing codes and formal procedure and reinforced through the threat of professional liability, the core of it all is based – like anything in ideas. Yes, there are industrial pressures which hold the current workings in place and, yes, those pressures are very strong. However, at the core of any industry which purports to seek to care for people is a stated commitment to do no harm and the evidence – both anecdotal and empirical – is mounting that – in spite of whatever misguided intention these systems may be operating under, whatever assumption of “good work” they may use to justify actions that are harmful and negligent of human rights and human potential- that not only is harm being done, but it is costing billions of dollars. Incommensurability – in a Kuhnian sense, in which bad science eventually creates its own demise – is on our side. I think the challenge of people working within these systems is immense and power is a privilege. Even for me, a person who is relatively privileged herself, with the social capital of a smile full of teeth and a college degree and ways of speaking that are accessible and appealing to those who make decisions, well…my individual power to change anything is very limited.

    …which is why it is necessary to find allies and to work together to forge a shared vision of change.

    The barriers to efficacy and access are real and privilege bound beyond belief.

    Thanks again for your thoughts and commitment to change. I have more to think about…

  • Thanks for reading, Yana…and for appreciating the value of trying to create spaces that “meet people where they’re at” – even if where they’re at might be currently defined by ideas or practices that I might not necessarily agree with or endorse…even if I strongly oppose – on the basis of ethics – what someone is doing, I have never met anyone who embraced a willingness to change their behavior because someone told them that they were evil. To me, change happens by making space for it and believing that it is possible and finding clear ways to get from the landscape of point A to the promise of point B.

    None of this would be possible without the work of people who pushed against the walls in oppositional protest, made the cracks for the light to get through.

  • Thanks, David! It was very encouraging to hear of such a successful organizing endeavor! I’d love to hear Courtenay Harding speak and it’s so awesome that Dr. Estroff spoke out against Pharma.

    There are some people in our state that have taken on organizing a yearly ‘Recovery Conference’ and I think, more and more, that it may become a real force in transforming some of the ideas that drive our systems here.

    It’s inspiring to hear a little about how you all organize the RSVP conference (meeting regularly, involving multiple stakeholders, etc.)- thanks for sharing about this. I didn’t even know this existed…so imagine all the other amazing things that are going on that I might not know about.

    People are doing a lot of great things out there.

  • Hi barringer – I am sooooo saddened to read about what happened with you and your family. Today? Really?

    It hits close to home, since I live in NC and – unfortunately, see this sort of thing all the time. This sort of systemic negligence and abuse is so…I mean, it’s…like so enormously f*in hideous and destructive in people’s lives that it…kind of blows my mind…and I don’t even know where to begin. There’s a real powerlessness that happens in thinking about these big structural abuses…which make people powerless.

    I get angry when I think about them taking away your daughter’s child, your grandchild. I had DSS in my life for a bit because of mental health related concerns and I know a lot of people who have had to fight to keep their kids and weren’t supported in their potential to be really good parents or in getting what they needed (e.g. stable housing, support, etc.) to keep their families functional.

    So, I live in NC. I don’t know a lot of people, but I know some people and some people who are involved in things, including a person with a TBI support network and various mental health people. I don’t know what could be done to raise awareness and positively impact the situation.

    What do you think would be helpful and how could you do it, what support would you theoretically need?

    feel free to email me. I don’t have a lot of time, but – then – nobody does. It’d be nice to figure out if there were anything that could be done that would be effective and what it might take to do it.

    In the meantime, my hopes are with you for a swift resolution. Sometimes these things get worked out “quickly”…but, in so many cases, there is so much damage done that it just goes on and on. People can be lastingly hurt when kids get taken from their families.

    How do you think we could address issues of systemic and institutional abuse, negligence, and general f*ed-uppedness of the the mental health system in NC, and the DSS/family court situation in NC?

    Where to even start?

    I wish their were volunteer consultants who have done advocacy like this, trying to help an individual or family with the aim of also addressing the causes that led to their abuses. Like, when I read a posting like this and want to do something about it, what do I do?

    Is there any help for situations like this?

    By the way, wonderful article, Tina. Your anger, so eloquently expressed, is inspiring to me and helps me to remember to clear the details and the politics and the theory and remember what is really happening around here.

    barringer, I am so sorry for what is happening in your family and my hopes are with y’all.

  • Stephen – I have infinite appreciation for your ability to work in the setting that you do and I’m sure that you being there has probably turned the experience around for some people, been a little point of light and humanity.

    So, thank you for being in such a difficult position. The hospital here is getting ready to “bring on peers” – and are trying to figure out how they will function there.

    If hospitals are going to “use” peers, there really should be some kind of guidelines of professional role and ethics…that put peers in the position of being peers, doing actual peer support and not participating in restraints or coercion.

    Do you know if something like that exists, guidelines of practice for peers in places like hospitals – so that hospital admins understand what peers are and what peers do and what they do not do?

    It makes me feel a little ill that peers are not even able to do the work of peers in many of the setting they are employed in…peer support, real peer support…which is what it sounds like you are trying to do and which I applaud you for.

  • I don’t know if Jani has social defeat or not.

    It seems to me like it might be fairly defeating to be the “mentally ill” daughter and have to go through all that she has gone through at a young age and not be able to find a non-sick space for oneself in the family.

    I think social defeat is more complex than this abstract indicates.

    I personally don’t think Jani has schizophrenia, either.

    (I don’t think that schizophrenia is even a valid construct, since what gets called schizophrenia can – in many cases – be explained or understood as something else, from transformation of self, to gluten reactivity, to sensory processing disorders intersecting with trauma.)

    What was happening when Jani was a kid could be explained by autism and synesthesia or other sensory integration/processing issues.

    Instead, she got pegged with schizophrenia…which is a label that itself can lead to social defeat, per stigma, confusion about self, and abusive treatment, etc.

    I wish I could talk with Jani, hang out with her, spend time with her folks.

    It’s pretty sad that they are making this “social defeat” thing loop back to the “chemical imbalance” theory…without instead addressing the structural and cultural issues that lead to social trauma.

  • “Collective members have organised public debates around mental health, and had stalls about Asylum magazine at events ranging from an Anarchist bookfair to a mainstream Public Health conference! Supporters of Asylum magazine have also taken Asylum magazines onto psychiatric wards enabling the patients there to have access to different perspectives regarding mental health.”

    I’m happy to see you around here, Tamasin and thanks for introducing the work you’re doing with Asylum.

    I kind of like the red…reminds me a little of the thrill I got as a child over 80s hair bands and R-rated videocassettes.

    It sounds like the collective is getting some really amazing stuff done and I love the idea of using this media as a way to make c/s/x perspectives available to people who might be in clinical settings.

    What I love almost as much is that a public health doctor is doing this sort of idea-dissemination…that’s excellent, in my opinion.

    Access to empowering information is definitely a public health issue.

    Thanks and very much look forward to seeing you around!

  • Thank you. That’s fine writing you’ve done on your site.

    This small poem of yours seems apt to post here:

    Remus and Romulus remembered
    December 3, 2012, 1:52 am
    Filed under: Poecry

    Isn’t it amazing how wild wolves,

    In the wild.

    Wild wolves will nurture a human child,

    Will care for them, suckle them,

    Feed them, cuddle and hug,

    And keep them warm and clean,

    Give them a home, play with them,

    Include them in the pack.

    But some people won’t!

    Yes, amazing.

    🙂 Thanks again…

  • Yeah, “flip” was probably an oversimplified term to use. I do that sometimes. Maybe “shift” was more the word I was talking about here, like maybe instead of being awake too much, you may become very tired. Sorry to 1/2ass hypothesize about a condition that has wrecked your life. Coming up with every little possible good outcome is how I keep myself from feeling trapped in a dreary fixed reality, but I do get that I have no right to muse about “what if…” in regard to other people’s lives.

    I personally think it’s absurd that nobody recognizes the fact that human beings are sensitive to activity in the geomagnetic fields and insulting that psychiatry makes it out to be some sort of tinfoil hat issue. Our brains and bodies have electricity. It’s what makes our hearts beat. We have electrical fields. There is electricity in our brains and in every cell. If there weren’t we’d be puddles of carbon, in which case we’d still have electricity, because it’s what holds everything together.

    Yeah, I’d really like to someday speak out (i.e. have people listen to me) about how reasonable it is that people are radio and energy sensitive, some more than others. We’re amazing creatures, sensitive in ways that just aren’t a part of our 5sense/5cents thinking about what impacts our lives and experience and what is real.

    It’s a big issue in our modern conceptual split between humans and the environment, denying recognition of a vital aspect our human experience…that some people are sensitive to how the stars are arranged and what’s happening with the sun. It’s not crazy. Seems to me to be about physics, nature.

    *shrug*

    When I said my phone and computer and radio were going haywire, I meant that in addition to being impacted by connectivity being affected by big lightning storms, it seems sometimes that how I am feeling or what I am thinking about at certain times seems to shut devices down out of the blue, single stations dropping off the air, things getting overloaded, shutting down…though it could just be coincidence, a spurious connection…but, I know that I am affected by universal forces, just like anything else that is alive.

    I really don’t like that the psychiatricized part of me says, “You shouldn’t talk about such things, Faith. People will think you’re crazy.”

    At this point, that makes me want to say more…

    hope the night’s alright.

  • @John – I am really interested in the work you are doing with sustainable activism practice and had to nod my head emphatically at this ->

    “the bigger need was helping people who had gone to too many badly ran meetings.”

    So true!

    Are you familiar with the Mindful Occupation publication that was put out in 2011? It’s a great little book, oriented toward supporting people involved in direct actions, but also toward building a culture of mutuality, appreciation, and support in activist communities. http://mindfuloccupation.org/

    I think that @skybluesight’s call for more proactive confrontation of what’s not working and identifying other approaches is relevant not just in supporting individuals, but also in supporting groups of people who are struggling with one another in trying to get things done and move forward.

    “A lot of it is about looking at how groups are getting on and bringing it to their attention. It’s not a popular way to work but I see it as essential. Why repeat the old oppressvie patterns of a society you’re trying to change? It doesn’t make sense to me to work that way.”

    It doesn’t make sense to me either. I think it’s a true skill to be able to step back and see what is happening and to then be able to facilitate solution-oriented awareness of group dynamics and other ways of seeing things. I’m so serious when I say I want to learn more about how you’re getting involved in that work. I want to be doing things like that!

    I think about things in terms of micro/macro similarities a lot and I see the ways that the conflict and tension, dysfunctional expectations and frustrations that play out in groups are really similar to the ways that we sometimes approach ourselves in our efforts to remedy our lives.

    I like the idea that gentle challenge can be supportive, too…that we don’t just have to support people in staying where they are at, walking with them in circles, but that we can help people move forward. I think that as a supporter who has a background in education and mentorship, I am much more oriented toward that mode of support.

    I can listen compassionately and accept where a person is at, but being one who has trained my mind to always try to see past where things are currently standing, to look at the bigger picture and strategize a navigation plan through whatever tangly landscapes I might be inhabiting, it’s hard for me to not say, “Okay…and so how are you going to get this? Is there another way to approach this? What’s your plan?”

    …which is not always helpful for people, but sometimes it is…to just have someone truly believe that a way through and out is possible. I honor how entrenched some people are in pain and impossible circumstances. In my own ways, I have hung out in those dark and closed in spaces for some good bits of time…but, at this point I know – more than I know anything else – that everything changes (though true, things can get worse before they get better) and that we often have more power in our lives and states of being than we (as humans) often realize, even in times of experienced powerlessness.

    Thanks for being out there and, John, please keep us posted on your work with sustainable and supportive activism…very important.

  • @Jen Maurer, @Claire, @Michael C. – Thanks all of you for reading and for doing the work you’re doing out there…and for being my allies, and mentors. The blessing/burden of supporting community and working toward a more kind world is carried with more ease knowing that you all are out there doing your parts and that we all share in the struggling grace that comes of caring deeply about people and what happens with them in their lives.

    Much Love,

    Faith

  • I really liked the story of Banda, Ted, and for some reason it makes me incredibly happy to know that all these “adults” are out there with their bears.

    …there is some really special tenderness thinking about our stuffed and steadfast friends.

    Here’s to Banda, Fatso, and Frazer!

    When I was younger, I used to be pretty sure that Frazer was thoroughly alive and quite magic. Looking into his plastic eyes, I could have sworn there was something alive about him.

    I am not sure that I don’t still believe this.

    @mjk – I would lose my mind if I couldn’t sleep. When I think about all the stuff you’ve had to contend with and the things you’ve lived through I am astounded by your strength. I hope that something shifts and your life gets easier, so you can use your energy in ways that feel more awesome for you…instead of having to work so hard just to cope with being alive.

    I hear the sun is getting ready to go through a reversal of its magnetic poles. Maybe your circadian rhythms will flip, too?

    It’s abhorrent that your sleep disorder led to such difficulties and was framed as a mental health issue…yeah, if people don’t sleep, they can’t take care of anything…amazing that nobody has figured out something that will help your sleep cycles work better for you. It’s like, wow, we can launch rockets and measure the magnetism of the sun, but we can’t figure out how to help this person to simply sleep.

    Yeah, May and early June were intense for a lot of people. Everybody I know who is on certain spectrums was dealing with all sorts of weird out of the woodwork static and malfunctions. My radio had issues, too and my phone and my computer, everything was going haywire.

    Anyway, it’s cloudy and cool here today with a hundred things to catch up on, so I guess I’ll get on with it.

    mjk, if you ever wanted to email me, please do. I feel like we’re friends in a way…faithrhyneATgmail.com I have a friend who sometimes texts me in the middle of the night, just to say “hi, I have insomnia.” I don’t get the messages until the morning, but I like that this person does that and if you ever wanted someone to text in the middle of the night and say whatever to, you could do that.

    xo, frr

  • @mjk…

    (…a lot that I don’t know how to say, but you’re right…)

    The only reason I am alive in the ways that I am is because I got my kids back after they were removed from me as part of the result of me being in grief and losing my mind and my family colluding against me, sending me away and then glibly “chaperoning” me in my own home, for one hour visits with the people I gave birth to and was a good (if not great) mother to.

    I have written before about the time that they were away from me and what the whole situation did to me. I am not the same as I was.

    Three years ago, I was paranoid and legitimately delusional and totally alone and scared and under real surveillance because my family was openly telling people to keep an eye on me when all I wanted to do was mourn my lousy marriage and me quitting my empty job and losing my best dog friend and a beloved penpal and just, you know, draw some picture and watch some clouds, think some about what means what and why. I had lost my mind before, more than a few times, but that situation with the kids and the family and me…well, I will not be the same.

    I got my kids back because I was lucky (…and also because I jumped through some hellaciously insulting rings and made some very hard choices that weren’t really choices.)

    If I hadn’t gotten my kids back, I was going to shut down entirely. I could feel that it was happening, that it could happen.

    I got stuck a lot those months, fell into a hole in myself, couldn’t move my arms, couldn’t lift my head, couldn’t speak, because when I opened my mouth there was just outrage as thin and cold as a blade or like a motherf*in (a word that I usually spell out because I have the right to use that word because I am mother that was f*ed, but I won’t spell it out here, out of respect and not cursing and all that…)fire in my house.

    Still, though, I didn’t want to commit suicide. I just wanted God to stop my heart. I wanted to get a disease or have a freak accident. It seemed like maybe the best that might happen was for me to just give up inside myself and so I’d sit there, stuck, and picture being wheeled to my children’s graduation in a chair by my parents and we’re all so shrunken and small and their mother, the person they first loved in the world, would just be a husk, quiet for years…the thought of that possibility just killed me, sitting there…and I just so desperately did not want that to be our story.

    Anger and defiance, ultimately rooted in love – because maybe we only get truly angry/sad in relation to what we love in some way, kept me alive…that and delusions, the belief that the world somehow knew about me, that somehow my heart finally fully ripping open and me ranting on the internet at the height of summer had put me on some interdimensional radar of consciousness and orchestration, and that the world was trying to work something out somehow, played me songs to help me feel hopeful to help me keep going.

    I’m lucky and it isn’t fair.

    Four years is a long time. I cannot imagine. It makes me feel sick to think about it. I wish that all the women who have lost their kids to anything related to abuse and psychiatry would form an army of sorts. I mean, the power of all those hearts torn wide open…

    …sometimes (often) things that come up on these threads make me cry some, feel a lot…and it’s sick that I should be so lucky, my circumstances so kind, that my children and I are not apart in the ways that we almost were, that we could have been…when you, mjk, still live with that loss and I could just as easily be you and you me, with our ages and bears. That makes me feel sick and sad.

    I’ll have you know that whenever I feel sick and sad about something I direct that to the world, silently demanding that something be put into motion to ease or correct the situation. Like I said, I tend to be a “fixer” – because some things really shouldn’t happen in the world, some things need to be fixed, need to be made right. There is not anything I can do except for hope that some workings work.

    It isn’t fair.

    My bear’s name is Frazer.

    …what to say when there is nothing to say.

    I’m sorry. I wish you had everything you need.

    Do you ever listen to the radio?

    love,

    frr

    (I love lots of people, in all kinds of small and expansive ways. Maybe the 7 year old me would have been friends with the 7 year old you. God, I just want to cry…and that’s a good thing because it means my heart still works.)

  • This is interesting: http://www.7cupsoftea.com/ “Free, anonymous conversations with trained active listeners.”

    Anyway, I think that John was spot-on in his clear identification of how the phenomenon of human misery is directly tied to the trappings of a militaristic, capitalistic Industrial Growth Society. One of the reasons I am more involved in
    “radical mental health” than I am in “mental health advocacy” is because I cannot separate the abuses of psychiatry and Big Pharma from the abuses of corporatocracy and fascism in general and so, for me, working around issues of mental health and liberation is how I am choosing to do my part in trying to change the much bigger picture.

    Kudos to you, John, for offering support in the broader activist community.

    Seriously, I went to a talk on collective liberation last month and the speaker was saying something about activists having to face and work through their trauma related to living in a world that wounds our humanity, harms what we love and makes us less than what we may be…rule-bound mechanistic commodities. The speaker said, “Yeah, a person might have to get some therapy for a couple of months…”

    …and I sat in the small audience and just kind of balked, like – “What? Really? What about the roots of mutual aid in revolution? What about people helping people to be real and to be whole and to rise up in their lives? What about all these amazing radical supporters and trained facilitators that have been living and dying and healing with people for years and years?”

    One thing that I think is going to happen is that a lot of activist networks are going to begin coming together around these ideas of mutuality, support, and cooperation. At this point, people have burning out and in-fighting and destroying themselves for causes (which is their right)for so many years, and there is finally more literature on how to actually do activism in sustainable ways that it’s almost inevitable that different networks and overlapping causes will begin to figure out how to collaborate.

    …or people will just keep burning out trying to keep their little lives going.

    The economy alone can wreck a person at this point. The cost of food is just getting ridiculous, even margarine.

    That being said, onwards and thanks for being out there.

    Frr

  • @mjk

    Thanks again for sharing parts of your story here…it’s an awful sinking feeling that comes about when we do the math and gauge the days and realize that we may have been the last person someone reached out to before they took a turn…

    Interestingly, a couple of weeks prior to the person’s death here, he sent me a cryptic text first thing in the morning, on Father’s Day:

    “Thanks for all your help Faith. Take care.” …w/ a little “wink” emoticon.

    I was like, “Oh no he’s not…” and texted him back, and he didn’t respond and he didn’t respond.

    So, I called him a few times and left some messages (all of this was while my kids were wanting me to go outside with them on a beautiful day and my head was just completely consumed with the thought that this person was committing suicide…)

    The person finally got back in touch, said that what did it for him was the knowledge that I don’t usually talk on the phone, don’t much like talking on the phone, and that my calling had made him appreciate my effort.

    I ended up spending about an hour texting with him, at one point saying, “You know, it’s not even about you today. You have two little kids and I don’t want their dad to die on Father’s Day.”

    He was in the middle of an ugly custody case and was very angry at his family and ex.

    It feels ugly for me to think that sometimes the dispossessed and shut out, who feel that nobody can or will help them, might sometimes end their lives in something of a passive aggressive act. I know it is never so simple as just that…but, the world can be a cruel place and removing ourselves from it could possibly – in some cases – be a form of pushback?

    ugh.

    Anyway, I have a 30 year old teddy in my bed, too. I got him when I was 7. He has been my bestie in many lonesome times.

    This ->

    “Throughout my life, many people have been almost stunned by their sudden recognition of great ease in opening up to me. They remark, “wow, I’ve never told anybody that before”. And when they say that, they aren’t lying. There’s just something about it – some people seem to feel a freedom, safety in openness, with me”

    …is a gift. What bums me out so much is that the people I know who’ve died by suicide are often deeply kind, caring and empathically gifted folks (perhaps part of why living is so hard?)and I’m like, please, the world needs you…some person out there needs you…

    hope the day is alright where you’re at…thanks for being around.

  • @travellair-vous

    Thank you.

    this -> “try to consider what the decision not to end my life means.”

    …is a powerful thing to consider…especially knowing that a lot of people’s lives and circumstances may lead them to simply say, “Forget it…I’m not going to go through all that.”

    I see more and more news articles about people committing suicide in response to poverty. Factory workers in China die regularly to escape their jobs. Soldiers and veterans die rather than to face war or living with the aftermath of war. The terminally/painfully ill commit suicide for relief of physical agony and the psychological effects of pain.

    Yet, there are many people in these same general situations who keep living and so, you’re right, it is all so deeply personal.

    There have been times that, in talking with someone, I have found myself thinking, “Well, yeah, I’d probably want to die, too, if (…) was happening in my life.”

    I don’t ever say that, of course, because it doesn’t feel great to think that. It’s not a pitying thing. It’s more of an objective sense of “yeah, how does a person live with (…)?”

    I don’t really have much of a right to think anything about how I would feel in another person’s life. How could I know? It is more a reflexive thought, a “well, yeah…I could see how that might make a person want to die.”

    I dealt with my own suicidality for a long time and fleetingly still deal with it, though it is not what it used to be. Now, it is just a feeling that comes around occasionally and then it goes away.

    …at this point, I’m really glad I didn’t die and so the “you just never know” factor is huge in my mind.

    The thing that really helped me – personally – to be committed to being here, after a couple of “failed attempts” in my early twenties, was the realization that if I were to commit suicide, that would be all my life would have been and my family would never mention me again and if they did they’d tell my story all wrong and leave out the most important parts of who I am.

    When I didn’t have a particularly strong will to live, defiance became a useful motivational tool. I’m privileged though, in many ways. Not like I have tons of money or anything, though I have always had a roof over my head, a door to close. I don’t have health insurance, but I’m healthy. I have social capital and cultural privilege that is more happenstance than earned.

    I haven’t had near as hard a time as lots of folks.

    thanks again for all you said here…

  • Thanks, Duane, for sharing your warmth here. I always appreciate the way that when I could go on and on about something, you seem to sum up the best of what might be said in a little quote or a small story.

    After I sent this to be posted, I thought, “I should have said something about how we can be a friend to ourselves if we have no friends!”

    During times when I had no friends, and there have been several particularly long and friendless stretches in my life, I mourned the absense of “friends” and would say all sorts of terrible things to myself about being unloveable, a “pariah,” invisible with no one who cares.

    At some point, I figured out that I had to be a friend to myself, asking, “If I had friends, what would I need from them right now?” …and then trying to offer that to myself…acceptance, belief in my worth, love.

    I also had to begin to acknowledge that I did have a lot of friendships, sometimes in the form of small conversations with strangers or a place in the heart of people I hadn’t seen or spoken to in years. We all have a friend out there somewhere.

    Friendship isn’t always what it might seem to be in our minds. Sometimes it’s the kindness of strangers, the devotion of animal friends, or even a small bird out in the yard. There have been times I felt friendship with fireflies, wind, stories.

    …thanks again for being around here.

  • Hey Vanessa,

    “As far as improving support networks, mentor relationships work well.”

    I think locally we may be heading in a direction like that, although it hasn’t been formally established. At various points, we’ve talked some about the co-counseling model and about peer-to-peer relationships, which are far less messy than “friendship” – which could mean just about anything in people’s minds. I think that support can get messy when people have different expectations and all sorts of emotional and personal tie-ins with how a person is able to respond or not respond.

    I think that we have, at this point, established that though we seek to be supportive of one another, it’s best not to encourage a sense of being responsible for one another’s lives and wellness, but to focus on being responsible for ourselves in identifying needs, meeting them when we can, and accepting that sometimes our needs might not be met and that is – in the broad scope of things – just how it is, but we have to keep going anyway, trusting that people care about us and that the world somehow wants us to be okay.

    “Boundaries were clear, like, “We meet for one hour on Wednesdays”. But, it was also a friendship, no money exchanged…like holding hands in the dark.”

    We had a really interesting talk at work last week – in the context of a class called ‘Healthy Boundaries’ – in which we discussed how to be a good supporter and we came upon the idea that sometimes people are better at certain types of support than others. One woman was like, “I feel awful. I never know what to say. All I can do is listen.”

    I was like, “You have no idea how rare the ability to just listen is.”

    Other people identified that they really liked encouraging people or helping them to figure out how to solve tangible problems. Some folks said they felt most comfortable doing things like just watching a movie or giving someone a ride somewhere. So, there are lots of ways to be supportive.

    I’d really like to work on some materials about how to operationalize mutually supportive intent in relationships…or at least read more of the materials out there.

    I am a little socially vulnerable/socially naive so I have to be pretty mindful in relationships. It took me years to realize this. In ways, my not having the same lines that other people have has led me to some really wonderful and important moments, because I don’t think about social rules and social etiquette much, unless I’m being careful.

    When I’m being myself, I just talk with whomever about whatever seems true in the moment.

    Like, “Wow. I really want to sit down next to this aging houseless person at this gas station and talk with them. They have blue eyes like a painting and they looked right at me when they smiled.”

    (I still see that guy around town regularly. We’ve been friends for two years now.)

    Thanks for bringing up mentorship/peer=to=peer relationships and the “B” word…

    So glad you’re out there and in touch.

    xo,

    frr

  • Hi mjk –

    I have got to do something about this awful
    “fix it” mode that I learned from my mother.

    “Say something positive!”

    Oh, it just makes me want to puke.

    I mean, clearly, there is nothing I can say here…other than thanks. Thanks for offering up your story because it is such a primo example of the sort of wrenching human life/death drama that we just don’t know how to deal with.

    Our entire mental health system is set up to send a story like yours to the hospital.

    Will it help? No. Obviously not.

    Will anything help?

    I don’t know. It sounds like maybe not. One thing that really bugs my suicidal friends is my bothersome commitment to a belief that maybe something will work out, that maybe things will get better.

    I know. It’s obnoxious. I don’t question people’s beliefs that everything will suck and be painful until they die, I really do try to honor the reality and power of that belief and for some people it might be true. It is true when people believe it to be true.

    Still, I have to tell them that I’d be lying if I said that I didn’t see things differently, or see them differently…and that I’d be lying if I said that I was okay with them not being here.

    It makes me feel weird, because usually I just want people to be able to do whatever makes them happy, and I don’t want anyone to be in pain.

    Yet, I still struggle with accepting suicide…

    See, here’s the deal: you, mjk, are one of the few people around here that I actually feel like I could say whatever is true to me to and you wouldn’t think I was crazy. You have said some beautiful and powerful things in these comment boxes. Poetry.

    You were, I could feel it, among the few who really truly got what I was saying about songs.

    …so, I don’t want you to die and it’s just that simple in my mind.

    I have had to adjust my thinking about death a lot over the past couple of years/decades. I now hold a worldview in which what is best in us never dies. Still, I want very much for people to stay alive…so that they might have a chance to know and enjoy what is best in them while they are living.

    I don’t know. I do know that knives are not cuddly and that stomachaches hurt and, damn, I hope you find some ease in dreams tonight.

    Please note: this may be selfish, but I have to say it’d really suck for me if you committed suicide and I was one of the last people you were in contact with.

    So, I do have a question, because I am always trying to learn more about what helps and what is not helpful at all…

    When there is nothing that can be done, nothing that can be said, what can be done and what can be said?

    I think sometimes family and friends back away because it’s too sad and they don’t know what to do.

    This is probably inappropriate, but if we were in the same room I’d ask if I could give you a hug.

  • @Duane, thanks for this small example of just how simple it can be…

    “I shared two dreams that seemed to me to be quite frightening; although when he heard them he smiled and told me they were wonderful. After I heard his interpretation, I experienced an overwhelming sense of peace.”

  • Note, re: “…there are no barriers to the ideas and perspectives that drift around the internet and fill the shelves of libraries.”

    This isn’t true. If you don’t have a computer, you can’t read this essay…and if you can’t read, then books filled with words are of little use.

    Fortunately, there are a lot of folk and vernacular traditions re: dreams…but, as people are coerced into trying to live the America Dream, those other ways of thinking about dreaming may die a little…?

    Then again, in my thinking about the world, the collective unconscious is a persistent presence, as are our wistful hearts, and I think all true art comes from telling of our dreams, whether the artist knows it or not…and art, especially true art, has so many forms…so many ways…

    Thanks for getting me thinking about this some.

  • Thanks for this essay, Michael, really lovely to honor that oft-neglected aspect of the human condition…that we are vast dreamers.

    I cannot help but to wonder, however, if there is some privilege involved in becoming aware of one’s dreams and the significance they may have in one’s life, what they may tell us about our deepest subconscious symbols, fears and longings.

    I do not want to become the person that endlessly says “This is privileged! That is a privilege!” – but, it is hard not to, when so many of our ideas about healing and empowerment are, in fact, impacted by privilege and access to ideas and a culture that supports exploration, questioning, and self-actualization.

    All humans dream, and yet not all humans have the opportunities to consider what their dreams may mean or are invited to embrace the potential importance in them. True, anyone can consider their dreams and there are no barriers to the ideas and perspectives that drift around the internet and fill the shelves of libraries. Yet, many people, due to the structure and circumstances of their lives, may not be privy to dream consideration and certainly may not have access to a real live person with whom they can discuss their dreams in a therapeutic or self-actualizing process…other than themselves, of course. 🙂

    Since David brought up Maslow, it seems to fair to say, “Yeah, but…so, what is the relevance of dreams to the person trying to survive?” (This is not to say, in any way, that dreams are irrelevant to the desperate – they may be even more relevant?)

    I have to wonder though about the extent to which self-actualization seems to be a privilege in many ways…and that perhaps denial of/disparity in access to/punishment of self-actualization is at the core of many forms of human oppression.

    I do know that during my hardest times, dreams were a solace, an escape…sleep was a way out…yet, I did not want to analyze my dreams when I woke up…because I immediately had to go back to trying to survive within my waking life.

    I remember, however, that some mornings, I woke with my body and mind in the grips of a fear and anxiety state, my dreams having not been a refuge at all, but an invasive and threatening event that I did not take part in willingly.

    I have since done a lot of work on my dreams and in my dreams, finding the realms of sleep in which I am able to participate consciously… manipulating what occurs, considering what I think about it, mediating what I feel about it and the impact whatever comes up in my dreams has on me.

    Thus, I appreciate your call for more consideration of dreams in therapeutic dialogues…but, it makes me sad to know that very few have access to such spaces of loving kindness and acceptance, where they can speak without fear of what crosses their mind at the edges of sleep and waking, the places they may visit or return to behind closed eyes.

    How can we create a culture in which dreams and all our little private voyages are held as vital (and interesting and cool!) across lines of privilege, where the day laborer and the young person in public housing or the person stuck in a trailer out at the county line may be invited to hold their dreams close, too?

    As I write this, I am struck by the knowledge that most people probably do talk about and think, at least some, about their dreams…while they are getting ready for work, driving in the car, sitting quietly and having coffee…hanging out with friends in the middle of the night. There is something uniquely unifying in the fact that we all dream.

    I think it’s great that you ended this essay with the most simple and accessible suggestion: to take a moment and write down our dreams.

    While I value my dreams, and often feel that I get good work done while sleeping and drifting in a semi-wakeful state, I know that if my life were just a little different, I’d have no time for dreams and I may pronounce Jung as Jung, with a hard J.

    It is my hope that, in the slow shift in consciousness that seems to be occurring, the masses of dreamers will find what is true and vital to them. Sometimes, when I am not sure what else to do, I just hope with all my heart that the president/corporate head/warlord will dream dreams that wake them up, that remind them who they were and are as children.

    Much appreciation for the opportunity to spend some time with hope for the dreaming world.

    Note: Do you know of any studies that examine the effect of neuroleptics and other psychoactive drugs on our dream states?

    Thanks again, Michael…

  • In Solidarity. I often wonder about what became of all the other kids who were in places like the one I was in.

    I’m glad you’re out there…

    It feels good to think that the efforts to make us compliant sparked, instead, a raw awareness and active defiance that has the potential to destroy the systems that tried so hard to destroy it.

  • Wyatt –

    Thanks so much for sharing your story so bravely and so honestly. I wish it were a world that talking about who we are didn’t require so much bravery. It makes me sad that people have to be brave just to be who they are.

    Actually, it makes me angry.

    I spent a lot of time with this piece. I really read it and felt it.

    Thanks for sharing so much of your story here and for this quote:

    “But, no one gets to write my story for me. This is my story. I get to diagnose myself. This is me making this not matter.”

    FR

  • …minor clarification:

    We are all, as humans, strangely alone in our pain…just in different ways depending on what is expected of us in relation to our roles and other determinants of “who we are” and “what is appropriate.”

    …again, thanks so much for writing this, Sera.

  • Hey Sera –

    I’m also “late” reading this, but figure we find things when we need to. The experience of reading this left me with a whole new level of respect and appreciation for you. This offers such a powerful and brave truth about loss, fear, and the brutality of uncaring systems.

    It is so sad to me that experiences like having a fleeting image of harming someone that is loved and cherished can be so deeply traumatic in and of themselves, producing all sorts of guilt and shame and fear and that people just have to sit with that by themselves. I agree that these sorts of out-of-nowhere opposite-to-who-we-are-and-what-we’d-ever-dream-of-doing thought image experiences are part of what it is to be human…we all have some fairly terrifying things that lurk around in trauma and grief and it’s frightening to me that people don’t talk about them or the effect that these thoughts/images/feelings have on moments in our days and lives. I guess it’s not so much that they don’t talk about them as that they can’t talk about them.

    This is so inspiring and brave…and might actually help me to get something written about how much I struggle with the conflict between loving my kids dearly and being very committed to “being here” and yet sometimes still feeling very graphically suicidal, with images. I don’t think I am in a “safe” enough space to give voice to that in a very public way…but, thank you for opening the door for mothers to talk about experiences that don’t jibe with our thinking about what the landscape of the internal world of mothers sometimes holds.

    I really don’t think there is any group so strangely alone in their pain as American mothers…because somehow it’s been determined that it is not appropriate for mothers to struggle.

    (Wow. I just got hugely triggered thinking about how mothers are treated, especially if they have a psychiatric history…a massive wave of anger and something that feels a lot like grief…and it feels good to know I’m not alone, and sad to know that so many mothers…for all practical purposes…are.)

    Much Appreciation and Mom Solidarity,

    Faith

  • Hey Sean – I’ve not been around, but the other day I got a flurry of notification responses to this thread and really appreciate your wisdom and perspective about how to graciously handle that difficult awareness that, no matter how we measure or define or describe ourselves, some people persist in seeing us only in relation to our “history,” as they see it.

    “Recovery” can catch a person like that, keep them tethered to those moorings.

    Thanks again for sharing your work. I am consistently impressed with how wise most of the folks in the survivor community seem to be…I guess you learn a bit about life when you live with life and death long enough.

  • Hey Chaya – I love the intro to this…and, moreso, the way that wry humor led into such a powerful and nuanced speaking of truth to power…personal/political…artful. You’re fantastic and inspiring.

    This ->

    “So I’d like to state my personal commitment to you: I will no longer be silenced. I will dig inside myself to find those things I’m still scared to say, and I’ll keep saying them. Please, please commit to finding your own sense of safety to do the same for yourself.”

    That struck something in me and I thank you for it.

    Here’s a brief quote from Audre Lorde, whom I want to quote about 10 pages of right this very minute. Yes, keep speaking!

    “I was going to die, sooner or later, whether or not I had even spoken myself. My silences had not protected me. Your silences will not protect you…. What are the words you do not yet have? What are the tyrannies you swallow day by day and attempt to make your own, until you will sicken and die of them, still in silence? We have been socialized to respect fear more than our own need for language.”

  • “…the world of ‘alternative research on the science of living.’

    “I did not identify as a survivor of psychiatry. But I do now. We all are, or are coming to be, survivors of an era where one medical subspecialty rose to claim authority over human experience and its travails…”

    And this:

    “…there is always hope, and no such thing as broken.”

    I haven’t been around here for a few days and this was a great piece to read upon returning. The videos you’ve worked on are beautiful and I really appreciated reading about your perspective. Much respect re: your reverence for the goodness and vitality of the best sort of stories.

  • “It is an affront to real medicine.”

    You really destroyed it with this.

    I think it is an affront to science in general, which is why rhetoric that portrays people who are critical of psychiatry (and other industries that exploit and manipulate the word “science” for power and profit) as being “anti-science” is so frustrating.

    What psychiatry calls science is actually offensive to the integrity of science.

    So, in some fairly clear ways, anti-psychiatry is pro-science.

  • @Russeford I hope some folks can attend that conference call!

    I appreciate you writing about this, Sandy.

    Did you see this:

    http://www.newscientist.com/article/dn23566-suicidal-behaviour-is-a-disease-psychiatrists-argue.html?full=true
    New Scientist, “Suicidal behaviour is a disease, psychiatrists argue”

    ugh. I share your appreciation for trying to clearly identify the limitations and implications of neuroscience and I hope we’ll keep talking about this topic on MIA.

    I think that, regardless of what we think, it would behoove us all to stay abreast of research directions and to try to mediate some of this rhetoric about aberrations, epigenetic variations, and diseases.

    I wish the NIMH was clearly thinking as much about the ethics of neuroscience as we all seem to be. Of course, they are operating from the worldview that our brains control almost everything and that our brains must surely be diseased.

    Did I already say “Ugh”?

  • Hey Sean, thanks so much for writing this…

    I think I am (seriously) going to print this out and read it every time I need to remember why exactly it is so hard, still, to speak with an even voice when someone is sitting across a desk and smiling and nodding at me, evaluating me even in my “recovery.”

    Reading this brought up a lot of feelings for me, some of which were really close to anger, thinking about a certain smug sort of smile that I have seen in particular meetings…but, I gotta tell you, your perspective and compassion towards people who may not even realize that they are being smug is probably the most heartening and simply wise thing I could have come across today.

    Thank you for talking about how you experience some of the challenges of intrasystem advocacy and thanks for being out there, doing what you do.

    Much respect…

  • “We are diverted from the reality that many emotional problems are not caused by biochemical or genetic defects but are often natural human reactions to powerlessness, hopelessness, and loss of community and autonomy that have been created by public policies. Mental health is hugely political, and it is very much connected to the sanity and humanity of a society and culture.”

    …in Solidarity!

    …Green Shadow Cabinet, huh?

    That’s a pretty cool name, brings to mind superheroes and what not.

  • (some of this is gratuitous…obviously, I am foolishly trying to make sense of the human condition, which is admittedly beyond the scope of this comment thread…though maybe not. Anyway, a lot of this just me thinking to myself and trying to figure a few things out…so thanks for prompting thought.)

    Thank you for making that clarification, #meremortal. You’re right, I was thinking along different lines, thinking about how we describe the core of us, describe ourselves, rather than how do we describe ourselves as a movement or define ourselves as a group with shared characteristics. So, it was a matter of us talking about two different things entirely.

    I wonder a lot about who I am, about what makes me who I am. While what has happened to me does offer information about my experience and some evidence of my personality and character, based on:

    what I make of my experience and who I spend my time with and in what ways, how I integrate those aspects of event and time into my identity

    …I don’t know if those points of definition necessarily say a lot about who I am and what makes me who I am. Sure, they tell my story, and certain forces within that story act figuratively upon my expression of personhood and conceptualization of self, but my experience of what happens to me is dependent not just on prior experience and learning, but on some basic foundation of capacity and attribute that set(s) the framework for everything else to be built on.

    This is obviously a much bigger question, more along the lines of “What makes us who we are?”

    So, I guess I’m looking for a descriptor that captures more of the core, that says something about what makes me who I am. It’s a futile search, because even a word or set of terms resonates as accurate and encompassing of me, words get wrecked in the space between people, meaning is lost and twisted around. OUtside of nouns describing simple objects, very little means the same thing to anyone, and even in terms of simple objects, the words for these things elicit different image and sensation, different significance.

    Words cannot, at the end of the day, say very much at all about who we are. Even if they speak to us, we cannot communicate the meaning reliably to others and we certainly cannot tell them anything of what it may mean to be us, to feel like to be us. We can churn out thousands of pages and even if anyone bothered to read they still wouldn’t know exactly how it *feels* to be us.

    As an aside: Some days, I think that defining ourselves in relation to other members of our species is an okay thing to do. That’s what species, both simple and complex, do. I think Harvard entomologist Edward O. Wilson tried to say something about human diversity as a component of species function back in the 1970s and it caused a big uproar, with it’s implications of rank and purpose. People misunderstood. They did not grasp the point that all parts are vital.

    So, getting back to your initial clarification, yes, as a movement it makes sense to define ourselves collectively as psychiatric survivors, but as individuals can any of us best be described by descriptors that only say something about what happened to us and how we relate to what happened to us, what groups we belong to.

    Does that say much at all about who we are as people or how we experience the world? Should it? Given that this is a movement that is comprised of people who were harmed because of who they are and how they experience the world (or, rather, how that experience is expressed and interpreted) – it seems odd to me that we don’t celebrate the individual more…we do in terms of their work with the movement and in terms of what they survived, but isn’t there more to us than that?

    The thing I have liked most about this thread has been people’s stories and the details that say something about who they are, with dog barks and the colors of harm and healing, which – Morias – I did understand and appreciate.

    When I read (anything) I picture things and so I saw the yellow edge into green, in a way that looked like rivers, and it was a beautiful representation of healing.

    Aside about the primacy of certain labels: One the things that I really can’t stand about psychiatric diagnosis is that it acts a super-definer, meaning that a psychiatric diagnosis has the capacity to supersede all other aspects of who we are, as it indicates something wrong at our core.

    So, psychiatric survivor works for identification within the context of a movement, and offers a fair amount of information about what that means (“We survived psychiatry.”) It doesn’t recognize or affirm anything about individual experience or personal story. It can be distorting just like any other group name or collective group identification.

    So, getting back to neurodiversity, it is a useful term to me, in some ways…because it does say something about what I believe of myself based on available evidence, and states a general human truth (we all have brains and all our brains are different and our brains contribute to our experience in various ways) affirming some basic, core characteristics that contribute to who I am and what factors mediate my experience.

    Plus, it doesn’t really say much of anything at all and yet is kind of a science-y sounding word, leaving people to ask, “What does that mean?”

    …and then we can have a conversation?

    I think that I am just hungry to really know people.

    “My entire thing was to avoid any label that tries to do that because they are doomed.”

    @meremortal You’re right.

    There is no label that could ever say enough.

    Thanks again for being out there…

  • I had a label that did not bode well, guaranteed me a life of struggle and the potential for incapacitation. “There is no cure, but treatment is available.” Anyway, your use of the word ‘incurable’ reminded me of this little passage below.

    Awesome re: your barking skills. I have a child who regularly barks and emulates other dog behavior. She will be stoked to learn that some adults also maintain such skills.

    The poem below the quote is from Andrew Boyd’s little book of Zen-like meditations called Daily Afflictions.

    It goes like this:

    When you look around you, it is easy to feel hopeless.
    Things always seem to be getting worse, not better
    Even those of us still working for a better tomorrow
    can have a bad day, week, or lifetime, when all sems lost.
    But such a lapse of faith should not be feared.
    On the contrary, you should welcome it as a revelation.
    Our situation is hopeless. Our cause is impossible.
    You are faced with a stark choice.

    Do you dedicate yourself to an impossible cause?

    Or do you look after your own, making do as best you can?
    The choice is clear: you must dedicate yourself to an impossible cause.
    Why? Because we are all incurable. Because solidarity is a form of tenderness.
    Because the simple act of caring for the world is itself a victory.
    Take a stand – not because it will lead to anything,
    but because it is the right thing to do.
    We never know what can or can’t be done; only what must be done.

    I dedicate myself to an impossible cause.”

  • I agree with @meremortal that it doesn’t have to be either A) a person believes that neurology can play a role in our experience of X,Y, or Z or B) neurology doesn’t have anything to do with it

    I do think that what the NIMH, the APA and proponents of “brain disease” theory have made of our brains is deeply misled and unfortunate – actually “unfortunate” is sort of the understatement of the year.

    Given the principles of neuroplasticity, what goes on in our brains at one point is not necessarily written in stone and so it all becomes a bit of a moot point. I do think that some people – because the species is diverse and because of things like environmental toxicity – may have differences and that these differences may contribute to “distress.” However, except in the case of actual and measureable disease processes, these things are not medical issues.

    I think that @meremortals statement re:

    “…it is very possible to be “traumatized” but in a more global way by our sick culture(s). And that needs to be recognized more.”

    …is something worth keeping in mind. For people who say, “But, some people have these issues and have never had trauma!” is to define what is and is not traumatic for people and to deny the everyday trauma that we sustain in simply being thinking and feeling humans in the modern world. So, even if we aren’t subjected to personal, direct violence or the trauma of being unloved or brutally controlled, we must still endure the trauma of seeing bloodshed every time we look at the paper, or witnessing (if not experiencing) the effects of inequity and discrimination. We have to look around the world and worry about climate crisis and food supply, warheads and guns. For thinking and feeling humans, it’s a very traumatic world.

    I think this gets to “psychosis as a sane reaction to an insane world” and to Fromm’s idea of the “folie a millions” – collective delusion and repression of our natural human reactions to things that would logically seem to be very distressing. This is mentioned in the wikipedia entry on “sanity” – http://en.wikipedia.org/wiki/Sanity

    On a more microlevel, is it traumatic to understand language or social norms differently and to be excluded or maligned, or to have to cope with a near constant assault on senses or to care deeply about things that aren’t seen as remotely important to those in your life?

    So, acknowledging that – at certain points in our lives – neurology may play a role in how we mediate and make meaning of experiences is not to in any way endorse a neurological disease model.

    For me, I was not able to really understand my experiences until I understood something about the basic way I process information. For me, it was the missing piece and I was able to then approach experiences with more insight into what may contribute to my reactions, how my brain-mind-heart work together.

    As for identifying myself primarily as a psychiatric survivor, I prefer to not define myself on the basis of harms that have been done to me. While just last night I attributed most every difficult experience I had in adolescence and adulthood to psychiatry, either directly or indirectly, I don’t really like to think that the core of my identity rests in my relationship to psychiatry.

    I think there might be something about liberation somewhere in there…

    Thanks for hanging with me through these long comments and occasional misspeaks. I don’t always say the right thing, and sometimes what I say is just wrong, logically or otherwise. I am, like most people, just trying to figure out my own best truth and I’m realizing that it changes, depending on the perspective I apply or what may be happening on any given day.

  • Oh, hey, Scott – I was the one who used the word “toxic,”in reference to my subjective experience. See comment above.

    Yeah, I have a big chip on my shoulder about being analyzed and criticized. I am getting more mature about that. I think it is a defense mechanism and also the result of being analyzed and criticized an awful lot and just being sort of tired of it at this particular point in time.

    I had an icky personal analysis attack happen in another digital setting today and so I am sort of feeling like the whole internet is a little toxic right this very minute.

    So, given that and the fact that it is now the middle of the night, goodnight.

  • Re: toxic

    …that’s why I try to make sure to put “I find…to be…at times”

    which is not making a statement of assessment about the site, but rather citing my experience – at times – in this culture. I will be the first to tell you that I have some social acceptance issues that haven’t quite gotten worked out, and so sometimes just being around people at all can be toxic (whatever that means) to me.

    Nobody has ever been mean around here, or even overly critical, most people are very nice. However, some people have tried to ensnare me in some pretty argumentative communications and have twisted some of what I have said in some pretty strange ways. I guess I have probably done the same thing to other people.

    Oh, re: the comment above…I think that what I like about the word neurodiversity, is not that it communicates empowerment (alone, it doesn’t) but that it communicates difference with neutrality, so while it does still place an individual in relational distance from some imagined norm, it doesn’t say anything about to what extent an individual may be different or what that difference may entail.

    Thanks again…

  • @meremortal

    I somewhat get what you’re saying about the conditions that would make the word neurodiverse appropriate for an individual to use, at least enough to know that there likely could not be a determinant “location” of collective divergence for any group to identify itself by. I have to grin at the issue of individuals describing themselves as “neurodiverse” as being a grammatical problem in relation to object plurality. Most people don’t really seem to care how English works.

    What about “neurodivergent” – as in, “I am neurodivergent.”

    That sounds, right this minute, pretty hokey.

    Yeah, you’re right, neurodiversity is a term that somewhat states the obvious, because we are all neurodiverse in some way. I have wondered about the utility of the word neurotypical. What does that even mean. There seems to be a lot of cultural associations with the word and culture is not neurology, though that could depend on how you define the scope of neurology. Cognition and meaning-making are both culture-bound, but those aspects of experience are related to what goes on in the brain, how we process and access prior knowledge. I think that attributes of culture can influence the way we process information and the way we respond to certain stimuli.

    Soeaking of defining location in relation, even if our minds and spirit are ascended in a transcendental state, our brain and our relationship to our brain is still involved.

    I guess neurodiversity is one of those words (like “mental illness”) that it doesn’t really say much of anything about anything, it just indicates some variation. While neurodiversity may not, ultimately, mean much, “mental illness” is somewhat more problematic, with it’s loaded content and the negative assumptions that lurk around it. Neurodiversity at least communicates some element of…what? Empowerment?

    I do thank you for bringing to light the matter of orientation to the statistical norm as the being the axis off of which all things are measured. I think the bell-curvification of our thinking about how human attributes or tendencies are distributed has diminished our ability to visualize what might really go on within the macro-human condition…which probably looks less like points on a line and more like a pile of scatter graphs, perhaps surrounded by a mystical fog of some sort?

    I would argue that there is a generally collectively agreed upon “normal” in many life domains, e.g. most people enjoy this or that and most people respond to X by doing Y or most people can tolerate this particular set of environmental conditions. I agree that normal is a somewhat mythical and that even if we are presumed normal in one setting, other contexts may find us bizarre. Also, we can be normal in one way but freakshow in another, all at the same time.

    So, while normal isn’t really real, our conceptions of what normal might be are real and there are real world consequences for breaking social rules or not meeting normative expectations within the context you inhabit.

    Re: “if autistic people and science want to accept that autism has a biological substrate and that it is neurological, then fine. But this cannot be assumed to also be true of mental illnesses, just because we (autistic people and people with psychiatric labels) are different from “normal” in some way, and because we all have brains! I’m not trying to be rude, but that seems to be your line of reasoning here”

    I wasn’t at all suggesting that all people who end up with psychiatric labels have some underlying neurological something or other going on that may contribute to their experience. However, there are a lot of blurry lines between experiences and the factors that may contribute to them, as you identified in your “problem with the DSM” – which in my mind extends beyond the issue of validity and is ultimately a problem of framing human experiences and ways of being as disorders or diseases.

    Yes, my line of reasoning did rely heavily on the obvious fact that we all have brains. You simply would not believe the number of people who would seem to prefer to not acknowledge that reality, so I really wanted to emphasize that.

    Your comment has given me a lot to think about.

    If we don’t orient to the norm, define ourselves in relation to it, how do we define ourselves?

    I think there is something about sovereignty somewhere in there or some question about whether we need to define ourselves at all, or who has the power to define us.

    Anyway, thanks again. No, I didn’t find you rude. In fact, if you hadn’t of said that, it would not have occurred to me that you may be offering friendly criticism.

    I hope you have a nice evening.

  • (this got a little long)

    Things got a little contentious around here for a bit there. I really appreciate the info from people’s lives about their experiences re: autism and how that spectrum relates to this topic. In truth, it was kids on the spectrum that I was thinking about when I decided that MIA needed to be more neuroinclusive, because kids that are different (in any way, really) are so vulnerable to denial of their human rights and in many cases may have difficulties that put them in the position of genuinely needing assistance of some sort.

    (It is worth noting, though we all know this, that anyone with rights is vulnerable to having them violated, though some are more vulnerable than others and – across all demographic lines, those who are deemed “mentally” something or other are among the most vulnerable in any given group. Though some socially/culturally/economically/racially defined groups are far more vulnerable than others, in any group the mad (which over history could include people with any number of different difficulties, ranging from psychosis to what we used to call “retardation”) are routinely the most at risk of abuse in many forms.)

    …and also because it is interesting that there are research directions that are seeking to explore potential epigenetic activity that may link so-called schizophrenia (and bipolar and depression and ADHD) to autism. I’m referring to the Smoller research, which nobody has discussed here. I haven’t read the paper, but read the abstract and heard the NPR blip.

    http://www.npr.org/2013/03/01/173271247/-study-depression-autism-and-schizophrenia-share-genetic-links

    In my situation, I am not entirely sure that genetics doesn’t play in a role in who I am and how my brain-mind works or the tendencies that have caused me difficulty – mostly in the form of being at odds with the “normal” world since I was young and having sensitivities that make some “normal” things difficult to tolerate. There is a familial phenotype that is evident in stories going back a hundred years. I don’t think we’re sick. I think we are smart and sensitive.

    Anyway, while genetics are not the end all be all, nothing, as eloquently noted by Hermes and Morias, is written in stone. I mean, Temple Grandin (a popular example) had some significant difficulties growing up, but she is clearly able to do a great many things now. I know my brain has changed. I used principles of neuroplasticity to change the way my anxiety-stress response works, of course this involves my mind as much as my brain, but it’s all connected.

    Anyway, my fear is that maybe they will find something, and that maybe – because they are looking for a disease – they will think it is an illness or an aberration and they will try to eliminate it from the population. This is not to sound paranoid or alarmist or eugenics-conspiracy-theorist, but it is a very real concern, because I really do think that most of the people I know who get pegged with mental illness are genuinely very special people, each with a rare gift of some sort, even if it is something so seemingly small as being incredibly kind to and concerned for animals, or having a way of seeing the world that not everybody has or being able to tell if something is just a little off center…not to mention the more extreme cases of skill and talent in arts and letters, social justice, and in creating new sciences.

    Why do pro-“mentally ill people are potentially dangerous/dangerous people are mentally ill” folks always feel such liberty to present bombastically negative rarities as examples, with the swords in the mall and the feces, and yet we do not seem to be comfortable citing the real and numerous totally amazing cases of people who would meet diagnostic criteria and yet whose work and lives have changed the world?*

    We’re a very humble bunch. “Give us our rights! We deserve our rights!” Yes, yes, we deserve our rights, but we also – as human beings who have experienced and seen and learned from our remarkable lives

    (and noone can say that staying indoors alone for years is not a remarkable human experience, or that thinking the world is speaking to you in code and signal, divine transmission, finding patterns in everything and being heartbroken – absolutely heartbroken – by what we see in malls…it’s all remarkable)

    …we deserve more than rights. We deserve to be seen and appreciated for the best of who we are. I think that people who get called mentally ill are actually very resilient, if they stay alive.
    (What would a devil’s advocate, a eugenicist and a student of Darwin say about suicide rights? I won’t answer that, but I will say that I don’t think the world is – at this point – designed well for healthy human life.)

    It kind of bums me out to see people arguing here, though I have argued here. Sometimes I find MIA to be very stress-producing and sort of socially toxic in ways. There are times I haven’t felt safe here, mostly because I don’t like being analyzed or having my intelligence or integrity called into question and that is something that seems to happen around here a fair amount. I don’t like being analyzed, especially because nobody here or in the whole wide world knows exactly what it is like to be me at any given point in time.

    It’s been an argumentative kind of day. I don’t know if psychiatrists and the like (unless they are MIA blogger psychiatrists) are “safe” here, though it seems like having to face the attacks of survivors is not – as indicated by cannotsay – anything near the “not safe” that we – as survivors – have been in the company of psychiatrists. I think also, that because the events forced treatment and the language of psychiatry have been so traumatic for so many folks around here that it is triggering and that it is disrespectful, to be advocating for and justifying the very same practices that tore our lives apart in some way.

    Even thinking about it for a split second, I want to light into some doctor, to say “Look! Look what you did to this person!” (meaning me) Of course, I know that the people who did what they did are not here. It’s interesting though, how I want to tell these things to Scott, who is playing the role of the “treatment advocate.” Some kind of transference dynamic.

    I can’t accurately blame psychiatry for everything, well…maybe I can. If I hadn’t gotten locked up at age 13 and put through all that awful business of being left there and being away from home and being in the quiet room and having my first gynecological exam by the admitting psychiatrist because he did not believe that I had never had sex and had never done drugs, so they tested me for everything. Oh, outrage, outrage, that my family was frightened into paying for that.

    Yes, I can blame every trouble in my adolescent and adult life on psychiatry and labeling and it makes me angry, because I am smart and I am a good person and I actually have skills but I live on less than 1,ooo dollars a month and haven’t had insurance in two and half years and though I am trying I am tired and still out of whack from staying alive through the worst of it and I really don’t know if I will ever have the potential I did have. That makes me angry and I just wish that the psychiatrists, etc. who visit this site would just care a little more about that and see what’s going on and start advocating for new job roles.

    I think a lot of mental health workers (and I am a part-time peer in a state funded recovery education center, which actually is recovery oriented) are trapped in the expectations of their professional roles, many are probably a little deadened, because I am convinced that the system hurts them, too – though professional compassion fatigue and internal ethics conflicts are nowhere near the hurt that is inflicted by many people who are “just doing their jobs” or “just trying to help” –

    Anyway, I am personally trying to stop thinking about psychiatrists as a blanket group, because it doesn’t make sense for me to say, “See me as an individual, see me clearly, trust that I am good and reasonable person who is trying to do the right thing!” …and then turn around and broadbrush all psychiatrists or other mental health related practitioners as horrible, evil, people. It conflicts with me spiritually and logically.

    Also, it doesn’t, as observed by Joanna, seem to be the most diplomatic way of encouraging change.

    By the way, Joanna, you’ve made me laugh twice this past week, with the Crunchy Nut Clusters and now the smock and the suicide by tampon. 😀

    It does all get so, so serious. It’s a serious situation, life. I guess that depends on worldview.
    Speaking of, it seems like it comes down to a fundamental difference in the view of being human. “They” reduce us to subhuman because in their minds, we are not fully human, because they don’t understand what we are communicating and in the modernist mind (built on the concept that “human” is tied to the concept that “I think therefore I am” and sanity has long been defined as “an ability to reason”) that means we are not – in a way – fully human, because they do not understand, they presume that there is nothing to understand and that we also do not understand.

    It’s really offensive, that the value of my perceived humanity is measured against rubrics set by people external to me who, frankly, have a pretty distorted view of a great many things. It is offensive to me that someone who doesn’t know me, doesn’t love me, and doesn’t even get the world I live in (which is very real to a great many people) would have the power to make decisions about what is best for me.

    Anyway, this continues to be an enlightening discussion and I appreciate you all helping me to get a better idea of the landscape around this topic of neurodiversity, “real difficulties” and human rights.

    *yes, cannotsay, Jesus Christ would have definitely been institutionalized and probably would have been ruined…last summer the Church of England did a sermon on the possibility that Jesus and many of the saints and prophets may have had “mental health problems” – yet they did not make the connection that perhaps what makes people “saints” can look a lot like mental health problems and that maybe we ought to pay more attention to these people who go mad in ways that have to do with something like God.

    Anyway, thanks again. It’s weird to read these messages through the day, to have this constant thread that I can’t respond to in real time because my mobile is just too clunky for that, but to be reading these words and thinking about what you all are saying.

    Oh, Scott, if you’re still reading, here is a link to a good video that really is worth watching. The program director at work shared it with me and some clinicians watched it, too and felt the information was sound and well-presented, though it does present a narrow view of recovery.

    Not Without Us: http://vimeo.com/62705552

    Also, this is interesting:
    NEW SOCIAL MEDIA CAMPAIGN FEATURES STORIES OF INDIVIDUALS WHO REJECTED PSYCHIATRIC DIAGNOSES
    Campaign timed to coincide with rollout of American Psychiatric Association’s DSM-5
    SAN FRANCISCO (5/18/13)– The Open Paradigm Project, in collaboration with MadinAmerica.com,Occupy Psychiatry, and leading organizations in the movement to reform mental health care, announces a social media campaign showcasing video testimonials by individuals negatively impacted by the traditional psychiatric model, which focuses on pathology and illness rather than wellness and recovery. The launch coincides with the American Psychiatric Association’s (APA) rollout of its latest revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), taking place at the APA’s annual meeting in San Francisco this weekend. In light of National Institute of Mental Health (NIMH) director Thomas Insel’s move away from the DSM (“lack of validity… patients deserve better”) and DSM-5 task force chair David Kupfer’s admission of an absence of biological markers of mental illness (“we’re still waiting”), these stories starkly unveil the failure of, and harm done by, the prevailing model of mental health care.
    These testimonials feature individuals whose meaningful, fulfilled lives – an outcome they attribute to rejecting psychiatric diagnoses they were told were incurable, and highly toxic treatments they were told would be life-long – demonstrate the dangers of a medicalized, manualized approach towards human suffering. Many reflect on years fruitlessly lost to “illnesses” they came to realize did not have a medical basis, and discuss alternative approaches that ultimately helped them embrace life’s challenges and integrate these experiences into their lives.
    The stories take on even greater significance in light of the controversies surrounding the newest edition of the DSM, as international public and professional communities openly question the biomedical standard of care. Lucy Johnstone, member of the Division of Clinical Psychology of the British Psychological Association says,
    “Traditionalists continue to claim that ‘We’re getting there – honestly!’In the meantime, the overwhelming amount of evidence for psychosocial causal factors (of distress) is once again relegated to a back seat.” Even so, the NIMH’s Research Domain Criteria (RDoC) and President Obama’s BRAIN initiative have announced they will continue to look for solutions in biology –an approach that, despite decades of acknowledged failure, Insel proposes to be only “ten years away.”
    “Even the most painful struggles are part of the fabric of a meaningful life, not evidence of an illness,” Open Paradigm producer PJ Moynihan explains. “These stories clearly reinforce that.”
    Lauren Spiro of Washington, D.C., said in her testimonial: “At 16, I was told that my brain was broken, and it was incurable. I felt like I would never be normal, that I would never have a life. So many people continue to be told this, and we have to stop it.”
    The Open Paradigm Project will launch in conjunction with a protest of the APA at the Moscone Center in San Francisco at 11:30 a.m. PT on May 19th via YouTube, Twitter, and Facebook. For more information visit openparadigmproject.com

    Sorry this got long and that there was some “personal” stuff in there…actually, I’m not really that sorry.

  • Hi you all –

    I have, again, been reading these comments throughout the day. I am actually feeling pretty tired this evening and not very inclined to delve into the finer points of this discussion. It’s actually sometimes difficult for me to absorb information from text on a computer screen and so I am sure that I will miss someone’s really excellent point…there are so many.

    This morning, I thought a lot about the water theme…the worst case scenario of the person who will not drink water, Joanna’s friend who needed water, the Hippocrates quote about if water was all we needed.

    Suzanne, I’ve neglected to say that I appreciated your comments and the twin study break down. I actually used information from that comment to respond to a question in class today.
    I’m sorry you lost your son. I can’t quite ever know what to say about losses like that, other than I’m sorry. I don’t know if I mentioned this around here, but I wrote that poem thinking about the people who have died under the helping hand of science, the imprecise brutality of treatment. I really do think, some days, that the reasons I am trying to change these ideas that poorly define our lives are based not only in the fact that those ideas almost killed something in me, and caused a great deal of pain in my life, and not only for my children, who these ideas affect, because I am their mother, and not only for the people I work with who have lost decades in these ideas, who have been damaged by tardive dyskinesia and the trauma of alienation, but for all the people who have died, both known to me and unknown, and all the little kids sitting on locked wards right now, having their Zyprexa as sprinkles on ice cream in small sterile cups.

    More and more, it makes me angry that we should even have to debate such things as whether or not people must be locked up, held in containment, or deemed ill.

    The criminal justice system is brutal and abusive. For people who are already vulnerable, jail can be terrible. I go visit people in jail every Thursday. It’s a nice, new clean jail and it is a terrible place.

    People do not, ever, out of nowhere wander into malls with swords, unkempt and covered in their own feces. It takes a long time to get to a point like that (unless drugs are involved) and if we existed in a caring society that ensured people’s human needs for shelter, meaningful vocation, and friendship of some sort, no matter how small then maybe we would not have the problems we do.

    I was once so lucky as to have no friends at all for a long little bit of time and so I was able to learn how truly nurturing the small kindnesses of strangers can be. You know what I’d do about the fellow with the sword in a mall? I’d ask him why he was carrying it. If he said he was going to battle, I would ask him with whom he intended to fight. I might look around the mall and laugh. I’d just talk with him. I might tell him he ought to be careful with swords in malls. Because I am nice and because I am non-threatening, most people like talking with me. I talk to a lot of people who are out of sorts, mostly out on the street, because I have always talked to strangers. Sometimes people really aren’t very alright in the state they are in, not because it is inherently wrong, but because it could get them in trouble or locked up, or possibly hurt someone, especially if drugs are involved. I actually don’t feel very safe talking with people who are clearly drug-affected and out of their minds, but most people – if you approach them in a way that is not fear creating – are usually pretty alright to talk with and, usually, they are happy to have someone listen to them, to not pretend they are invisible or act like they simply are not there or like what they have to say is not important or interesting. Usually it is very interesting, but I like stories a lot and so that might just be me.

    Most people experiencing the sort of madness that impels one to enter a mall with a sword or to try to otherwise defeat or bring justice to some sort of enemy, or to otherwise prove oneself are (conjecture and anecdote) conceivably under the impression that they are doing the right thing, that is why they are doing it. Usually the stories that people tell about what they are doing and why they are doing it are pretty fascinating and tragic. Sometimes it’s cool to talk about other things that a person might be able to do if they can manage to not get locked up or thrown in jail for having a sword and being stinky in the mall.

    Like Joanna said, sometimes starting a fire or screaming or making a scene is the only way to make yourself heard. Sad that people are driven to such desperation. I wonder what would happen if every town and city had a known and awesome open community support and wellness space, where people were always available to talk and where there were art supplies and showers, a clothes closet, water, people to help sort things out, a place to rest…what if towns and cities had these places? Would the people who might end up really going off the deep end possibly show up there at some point prior, knowing they could go there for help and human connection?

    It’d probably end up being a lot cheaper than hospitalizations and jails. I wonder how much a forced injection costs the state?

    I liked Morias’ color and blending model of factors that affect our lives as they may relate to our states of being and agree that we can always heal. I think that’d make a nice series of paintings, those colors.

    As for non-medical containment, all I can say is skilled peer respite. I guess it’s difficult, because sometimes (according to the Treatment Advocacy Center and other such pro-force entities) people don’t “want to get help” or “don’t know they need help” –

    I think it is a person’s right to decide if they want help or need help and to let them bear the consequences of those actions. I know that DJ Jaffe would pipe up with some horrible story about someone getting killed because a random person with an uncertain (but certainly horrible) history was not forcibly “treated.” That is very unfortunate. So is suicide. However, it is so weird to me that this country regularly kills people (in war, for example) and institutional and systemic violence are rampant and yet we so concerned about the well-being of people who are deemed “mentally ill” – why do we care so much that they get “what they need” or “what they deserve” – ugh. makes me feel sick, thinking about Torrey’s party line and all the collective NAMI matriarchs.

    People are scared of people that are said to be “mentally ill” or who present in a way that has been media characterized as “insane” – people don’t want to protect the “mentally ill,” they want to protect themselves from the threat they imagine, which exists in the form of both fear that a person will harm someone else or fear that a person will harm themselves. It’s all based on fear, not compassion…and in cases where people really do care, it seems like a lot of that caring is from a very odd place of paternalistic protection, like one’s own identity is caught up in the role that one plays in “helping somebody.” For doctors and providers, this sort of responsibility for other people’s lives and decisions is written into the expectations of their professions. It’s a matter of relational boundaries.

    Alright, I might go paint some colors…yellow, green, blue.

    Thanks for contributing to this thread. It’s amazing how thoroughly busted the broadbrush medical model is at this point. I wonder how long til it breaks completely. Are there any examples of other big shifts in scientific paradigm that people can think of…I guess the earth not being flat would be one or the understanding that humans have a brain. It is so amazing to me that at some point in history, we had no idea how we worked or what we even are, or how we relate to any other living thing. That wasn’t so long ago. Everything we know about humans was learned by researching humans, and experimenting on humans and observing humans, classifying what we see and giving it some meaning. A lot of human science is arbitrary and mislead, based on fundamentally flawed premises, like that anything about our current little definition of normal is anything more than a blip or that any of us were ever meant to spend our lives indoors, under fluorescent lights, doing things we don’t enjoy for paychecks to buy things we don’t even want.

    I hope you all have a good night and thanks again for talking about this stuff. It feels like we’ve taken into account a couple of realities that haven’t been broadly well-accounted for, extreme state scenarios and underlying medical diseases. What’s cool is that through most of this thread there is a consistent assertion that difference is not disease.

    I do want to take a minute and note, again, that kids on the autism spectrum are extremely vulnerable to psychiatric abuse, particularly after poor media related to tragic events. Sometimes, Mad in America is really so all about psychosis and what is psychosis and whatM/b> do we do about psychosis? However, Whitaker’s first book, Mad In America, and other books that look at the history of institutional psychiatry are pretty clear that it’s not just people with psychosis or profound depression that are at risk of medical and psychological harm under the guise of treatment…it’s also people with all sorts of different ways of being, experience, and learning.

    I think that human rights is a golden thread.

    Thanks and sorry if this was long, disjointed and with possible typos. I think my brain is tired of text. I’ve been looking at screens all day. I want to go draw.

    Much Appreciation to y’all.

  • “validity of short term containment without forced treatment as I have known a couple of psychiatrists who have done that with people at grave risk to put a ‘pause’ into what’s happening for them.
    This is incredibly rare because 99.9% of psychiatrists would compel physical treatments. I would like to know what people think about this.”

    I want to talk about this. Must go to work. Thank you for bringing this back up, Joanna!

  • Hi Scott – I really do appreciate that you ask questions that represent the thinking of the existing paradigm. It’s important. Not everyone is going to immediately agree, and the goal is not agreeance. The goal is to figure out some perspective that may be closer to a humane truth in our thinking about what it means to be human and what the implications and consequences of our experiences may be.

    I am now running late for work, but did want to say thanks for being willing to put forth unpopular (around here) perspectives…because, for many people, those perspectives are reality. My goal is not to have all my friends agree with me, my goal is to constructively figure out what’s going on with all this “mental illness” business in people’s minds…and, toward that end, it is helpful to talk with people who may have different views than those I hold. So, thank you.

    More later…really running late now.

    Hope that everyone has a good day.

    “I really don’t see that as a moral judgement either, I see it as a compassionate perspective. In my mind if you are sick you need help to get better, it doesn’t mean you are bad or defective. And that goes for me too if I am sick.” <- there is a lot to discuss in this, a lot to think about. Thanks again.

  • YES! Thank you for this, Morias!

    ->

    “…psychosis being a defence mechanism, not a symptom of the disease but part of the healing process; much like fever which is part of the body’s immune response to a pathogen and not just a symptom of a “disease”. Of course, just like fever can in extreme cases be harmful in itself and an intervention is needed to stabilize the patient, the same is true of psychosis, but the emphasis is on the fact that this is only justified in extreme cases and, crucially, the intervention must actually stabilize the patient and not just appear to do so while in fact adding wood to the fire, so to speak. In this I’d say that current psychiatric interventions are catastrophic; the only good thing you can say about them is that they are better than a bullet to the head, which is not really something to be proud of. To follow the fever analogy, they are like trying to lower a fever by blood-letting (actually, blood-letting for fever has a sounder scientific rationale).”

  • Thanks, Morias, not just for “agreeing” with me ( 🙂 ) and for liking the essay, but for contributing to this dialogue. I haven’t been able to respond at length to everything that I want to respond to here, due to time constraints, but definitely appreciate what has been brought up.

    I have to leave for work in 6 minutes, but want to come back a little later today and address Scott’s questions re: sword bearing in malls, etc. as a sickness.

    For now, I am going to leave a copy/paste of a very recent essay by Ronald Pies (whose name has graced these pages in the past)that was just posted on DxSummit http://www.dxsummit.org, which is an endeavor to explore diagnostic integrity – you can learn more about the initiative on the site.

    Also, just a quick thought that occurred to me: I wonder if, in many cases, it would not be more appropriate to say that, instead of sick, a person is hurt.

    Here’s the Pies essay, which does bring up some interesting aspects of the ontological challenge of determining what is healthy and what is not, from the perspective of someone who is actively involved in shaping the field and practice of psychiatry.

    http://dxsummit.org/archives/402

    What is “Medicalizing”? What is “Normality”? (Part 2)

    If sick men fared just as well eating and drinking and living exactly as healthy men do…there would be little need for the science [of medicine].—Hippocrates

    For the proposition, “Psychiatry is medicalizing normality” to be true, we would need, first; adequate definitions of the terms “medicalizing” and “normality”; and second, convincing evidence that psychiatry is actually doing what the proposition asserts. Yet both elements of “truth” turn out to be complex and problematic. Based on my reading of many posts and articles critical of psychiatry, the term “medicalizing” (or “medicalize”) seems to be used in at least four ways; e.g., to denote
    1.the inappropriate labeling of a “normal” condition or “problem of living” as a disease, disorder, or illness;
    2.the assertion that a condition or state of affairs requires the services of a nurse or physician;
    3.the assertion that a condition is due to disturbed physiology, a “chemical imbalance”, or some other bodily defect; or
    4.the assertion that a condition requires a somatic treatment, such as a medication, ECT, etc., or

    We are not greatly helped very much by scholars who have attempted a definition of “medicalization”. For example, the medical sociologist, Peter Conrad, in his book, The Medicalization of Society, 2007, writes:

    “Medicalization” describes a process by which nonmedical problems become defined and treated as medical problems, usually in terms of illness and disorders. (p. 4)

    But this definition is transparently circular; i.e., the definition assumes that a certain class of conditions are “non-medical”, but then—for whatever reason—come to be viewed as “medical.” But the author provides no necessary and sufficient criteria by which these two classes—non-medical and medical—are defined. Moreover, the author states, “I am not interested in adjudicating whether any particular problem is really a medical problem. This is far beyond the scope of my expertise…” Thus, the author acknowledges his inability to adjudicate the ontological validity of the claim “X is really a medical problem” while simultaneously defining “medicalization” in terms of conditions that are “nonmedical!”

    That famous critic of psychiatry—the late Dr. Thomas Szasz—highlights the fundamental philosophical problem Conrad’s formulation raises. Szasz writes,

    The concept of medicalization rests on the assumption that some phenomena belong in the domain of medicine and some do not. Accordingly, unless we agree on clearly defined criteria that define membership in the class called “disease” or “medical problem” it is fruitless to debate whether any particular act of medicalization is “valid” or not.”1

    While Szasz and I have radically divergent views on “mental illness,” I believe he was entirely correct in this particular claim. Indeed, the problem for those who argue that psychiatry is “medicalizing” normal human conditions is precisely what Szasz anticipates: there has never been, nor is there now, any universal agreement on the “membership” of the class called “disease.” The denotation of the term “disease” has always been in flux, if not in overt dispute, even during the time of Hippocrates. (Szasz would not agree, of course, invoking his probably mistaken interpretation of pathologist Rudolf Virchow). See, e.g., this rather breathtakingly broad definition of ”disease” from the 8th edition of Harrison’s Textbook of Medicine (1977):

    The clinical method has as its object the collection of accurate data concerning all the diseases to which human beings are subject; namely, all conditions that limit life in its powers, enjoyment, and duration.” (bold mine).

    The editors go on to say that the physician’s “…primary and traditional objectives are utilitarian—the prevention and cure of disease and the relief of suffering, whether of body or of mind…” (Isselbacher, 1977, p. 1).

    Note that in this description of disease, there is no implication that it refers to “bodily” pathology alone—as against the position taken by Szasz and other critics of psychiatry. The emphasis, rather, is on the presence of suffering and incapacity (“…conditions that limit life in its powers…”). It is fascinating to note that in the 14th edition of Harrison’s Principles of Internal Medicine (1997), the unmodified term “disease” does not even appear in the index, nor—so far as I can tell—is the term actually defined in the entire text.

    Now, all this leads us to an inescapable conclusion: unless we have a universally recognized “taxon”–a set whose membership is defined by necessary and sufficient criteria–there is no veridical “test” to determine what does or does not lie within the bounds of the category “disease.” Therefore, arguments about psychiatry’s “medicalizing” normality cannot be settled through the empirical methods of science. Such debates are essentially political-rhetorical exercises—or philosophical explorations–not arguments about ontologically verifiable claims. Of course, this doesn’t mean that the debate is unimportant, or without practical implications for our classification of psychiatric “diseases.”

    Paradoxically, those who argue that psychiatry “medicalizes” normality but who simultaneously assert that there is no clear demarcation between normality and abnormality effectively refute their own argument. For if there are no absolute, categorical boundaries separating normal from abnormal, then the claim “psychiatry is medicalizing normality” cannot logically be sustained: the argument is devoured by its own premise. That is: if normality has no precise boundary in the realm of disease—including psychiatric disease—then there can be no verifiable medicalization of normality. Neither can there be a veridical demonstration of psychiatry’s alleged diagnostic “imperialism” or its supposed creation of diagnostic “false positives.” Such claims are no more verifiable than a landowner’s complaint that someone has impermissibly planted a tree on his property, when there are no clearly established property lines. (This, however, doesn’t mean that we can’t make reasoned, empirically grounded judgments as to what conditions merit medical evaluation or treatment).

    There is also a problem with the claim that psychiatry imposes “the medical model” on “perfectly normal problems of living.” When critics of psychiatry use the term “medical model” in a derisive way, they seem to have in mind what Shah and Mountain (2007) describe as a “…paternalistic, inhumane and reductionist” model of understanding illness. Yet as these authors point out, the “medical model” need not partake of these characteristics. When understood more broadly, the “medical model” may denote simply, “…a process whereby, informed by the best available evidence, doctors advise on, coordinate or deliver interventions for health improvement.”2

    In any case, it seems clear that the term “medicalization” has many possible meanings; and that when critics accuse psychiatry of “medicalizing” normality, it is far from clear what they mean. But if “medicalization” is difficult to define, the term “normality” is far more problematic and elusive, if not hopelessly vague. It seems to have an almost limitless range of meanings; e.g., 1. the usual state of affairs in “healthy” or “normal” persons (whatever “healthy” and “normal” mean); 2. any condition or set of conditions that occur with high frequency, or more often than not, in most populations; 3. the inherent qualities and characteristics of most human beings. The philosopher Roger Aboud has highlighted the difficulties in defining “normality”, noting that it may be a mathematical, evaluative, or biological term. Specifically,

    …The biological concept of normality is problematic because it refers to the subjective meaning of ‘healthy’ and may not point to the average, majority, or ideal… Behavioral concepts of normality also suffer from subjective meaning and are contextually problematic related to definitions of average, majority, or ideal.3

    In sum, the two “truth elements” in the claim, “Psychiatry is medicalizing normality” are so semantically diverse as to be nearly indecipherable. It is therefore nearly impossible, on an empirical basis, to determine whether psychiatry is actually doing what the proposition asserts.

    On a purely numerical basis, it is noteworthy that the DSM-5 does not appreciably increase the number of diagnoses contained in DSM-IV, according to an official release by the American Psychiatric Association (Dec. 1, 2012). Indeed, a well-informed official connected with the DSM-5 informs me that the total number of disorders in DSM-5 will be fewer than contained in DSM-IV. Based on this fact alone, it is hard to make the charge of “medicalizing normality” stick. Moreover, while the DSM-5 does create some new and controversial categories—such as “Disruptive Mood Dysregulation Disorder”—it also turned down several proposed diagnostic entities, such as “Anxious depression”, “Hypersexual disorder”, and “Parental alienation syndrome”—diagnoses which might be interpreted as extending the reach of psychopathology into the realm of “normality.” Similarly, several conditions that had been proposed for inclusion –such as “Attenuated psychosis syndrome” and “Internet use gaming disorder”–were relegated to Section 3 of DSM-5; i.e., conditions that “require further research before their consideration as formal disorders.” Finally, the historical “subtypes” of schizophrenia—paranoid, catatonic, disorganized, etc.—have been eliminated. Overall, these trends do not point to increasing “medicalization” of normality.

    That said, I believe that the diagnostic threshold for some DSM disorders continues to be set too low. For example, my colleagues and I believe that the 2-week, minimum duration criterion for diagnosing Major Depressive Disorder (MDD) is often too brief, giving clinicians too little time to judge the patient’s response to a major loss—whether in the context of recent bereavement, job loss, divorce, or any other major life stressor.4 Furthermore, the diagnostic criteria for MDD are so broad as to create an overly-heterogeneous population identified with the illness; for example, a patient with 2 weeks of MDD symptoms is grouped together with patients who have had symptoms for over a year.5

    Conclusion

    In my view, the term “medicalization” has become a kind of rhetorical Rorschach test: it evokes whatever political, social, or philosophical position the listener happens to hold or wants to advocate. It is not a scientific term, or one that can be defined according to widely accepted, empirically-derived principles. Futhermore, to the extent the term “medicalization” can be defined, it is by no means clear that physicians alone bear responsibility for the phenomenon. In this respect, Conrad and I are in agreement. He writes,

    Many of the earliest studies assumed that physicians were the key to understanding medicalization. Illich (1976) used the catchy but misleading phrase “medical imperialism.” It soon became clear, however, that medicalization was more complicated than the annexation of new problems by doctors and the medical profession. In cases like alcoholism, medicalization was primarily accomplished by a social movement. (Alchololics Anonymous)…(The Medicalization of Society, p. 6)

    Furthermore, while it is arguably the case that many challenging aspects of the human condition lie outside the purview of medical diagnosis and treatment—everyday sadness or fleeting anxiety, for example—there is also a “flip-side” to the claim that too many conditions are being medicalized. This is nicely expressed by Vikki Stefans, MD, Associate Professor of Pediatrics and Associate Professor of Physical Medicine and Rehabilitation, at the University of Arkansas for Medical Sciences:

    … a person is labeled mean and hateful when they are really terribly depressed and irritable…or…a child is labeled lazy, considered the class clown, or seen as an academic problem–maybe even suspended or put in special education–when they have undiagnosed specific learning disability or [ADHD]…A child returning to school after a concussion or brain injury still has a good chance of being labeled lazy or uncooperative when they can’t perform at their previous level. Kids with spina bifida or [cerebral palsy] even have parents who think they are lazy for not maintaining their posture or turning a foot in or out because “they can do it when they want to.” And how about “she’s just a little shy” being applied to a case of elective mutism that is totally limiting and impairing a person’s life? Sometimes, people want to normalize pathology, too! (personal communication 4/29/13, and Psychiatric Times)

    There may, indeed, be “good and bad” forms of medicalizing, as Erik Parens, a senior research scholar at The Hastings Center, has argued. For example, applying the medical model to alcohol addiction might be an example of “good” medicalizing; whereas applying it, say, to the feelings of sadness one experiences upon the break-up of an intimate relationship might be considered a “bad” form of medicalizing. In any case, as Parens rightly observes,

    …the idea of medicalization depends upon the notion that medicine has ‘proper’ goals, which are visible to those with knowledge of the essence of medicine…[but] one needs a narrow conception of those goals to get traction for the medicalization critique. Without a narrow conception, one can’t restrict the range of the targets that medicine ‘properly’ aims at. 6

    And if, as I believe, the broad and overarching goal of medicine and psychiatry is the relief of certain forms of suffering and incapacity, it would seem that the range of “targets” for medical intervention is wide, indeed. While the term “medicalizing” may be useful in calling our attention to trends in medical diagnosis, it greatly oversimplifies the realities of medical care and human suffering.

    Acknowledgments

    My thanks to Eric Parens PhD, and to Vikki Stefans, MD, for their collegial assistance with aspects of this essay.

    References

    1.Szasz TS: The Medicalization of Everyday Life: Selected Essays, Syracuse University Press, 2007p. xiii

    2.Shah P, Mountain D: The medical model is dead – long live the medical model. The British Journal of Psychiatry (2007) 191: 375-377 http://bjp.rcpsych.org/content/191/5/375.full

    3.Aboud R: Wachbroit’s “Normality and the Significance of Difference.” September 18, 2008. Accessed at: http://driftingconsciousness.blogspot.com/2008/09/wachbroits-normality-and-significance.html

    4.Lamb K, Pies R, Zisook S.The Bereavement Exclusion for the Diagnosis of Major Depression: To be, or not to be.Psychiatry (Edgmont). 2010 Jul: 7(7):19-25.

    5.Ghaemi SN. Why antidepressants are not antidepressants: STEP-BD, STAR*D, and the return of neurotic depression. Bipolar Disord 2008: 10: 957–968

    6.Parens E: On good and bad forms of medicalization. Bioethics. 2013 Jan;27(1):28-35

  • This is a good discussion.

    I have been, in between work and home and this and that, reading the comments as they link to my phone and so I was driving home and thinking about Joanna’s comment about catatonia, and really appreciating the privilege of hearing about someone’s life and experience.

    “Imagine fear and distress so great that your mind and body completely shut down. This is where I went when my voices attacked me.

    Imagine a retreat to the core of yourself where you are untouchable. Where you remain till it feels safer to be in the world.

    Look at how gracefully a bird glides across a lake, it’s head and upper body almost motionless, yet underneath the stillness, it’s feet vigorously paddle, unseen.

    This is Catatonia from the inside. You can see and hear but you can’t cry out or break free. You are encased in an extreme concentration of fear.”

    I really appreciate you offering your informed perspective, Joanna. Thank you.

    There have been times I have gotten stuck, with my mind and body disconnected, related to trauma, dissociation. During one particularly bad stretch of sitting and staring, not being able to move or speak even if I willed myself, I wondered, with something that felt like dull terror, if “this is what it feels like to be catatonic.”

    I still, especially under duress, sometimes get “stuck” – where it feels like “all systems overload” and I just can’t even speak. I actually don’t think this is particularly extreme human experience. I have seen scenes in movies where a person is just stunned by what is happening to them.

    Thank you for talking about your experience, Joanna. It was a really powerful description of that place in the internal world, which I guess is different for everyone.

    Which brings me to John’s concern re: the viability of the term neurodiversity as a word that is apt in relation to “mental health” – I could probably write a bunch of words detailing the semantics of it, it’s limitations and its usage, but I don’t actually feel like we necessarily agree. I think you’re spot on in your observation that it is a little like an unnecessary distinction to make if it is used simply to denote that we all have different brains, and of course those brains change over time. On the other hand, it is used by a movement of people who self-identify as having differences that are far removed from neuro-normative range. Neurology isn’t only about genetics and eugenics and brain structure. It is also about the function of certain aspects of our experience known to be (or at least widely accepted as being) related to our brain, such as our sensory systems or our cognitive processing, so it’s not all blood tests and brain scans.

    I do think that NIMH research has the potential to be eugenic in its outcomes, if they seek to repress or “cure” certain human ways of being. That is why I’m stoked to see these dialogues. I think that not only is difference not disease, I think that difference is important in regard to the function of our species.

    Yeah, Vanessa, it’s really interesting how there is this “I’m really sorry these ideas are hurtful, but…” thing that happens. It’s like the ideas take precedent over our personal, experiential truth and when that truth threatens the ideas, people clamor for the familiarity of what they have been told, even if it really doesn’t make that much sense. Some people have a higher tolerance for operational invalidity and problems with words that don’t well describe or define what they are intended to.

    One of the biggest issues I have with “mental illness” (aside from the fact that it is very flawed in meaning)is that there is an inherent value judgment, as illnesses are generally thought to be bad and undesirable.

    You know what I don’t get, why some people are so in love with the idea of mental illness? I mean, it would seem like if a person had to choose between the medical model and the alternative model – with all its choices and approaches and potentiall positive outcomes – well, why choose “illness”?

    Thanks to you all for helping me to think more about all this…

    Here’s a blogpost from Ruminations on Madness re: Neurodiversity, with a little info on the use of the term within the ND movement. http://phenomenologyofmadness.wordpress.com/2012/07/

    …as well as a somewhat narrow definition as offered by Syracuse University’s Symposium on Neurodiversity. It is a term of empowerment along the lines of Mad Pride. http://neurodiversitysymposium.wordpress.com/what-is-neurodiversity/

    I don’t really care if people appreciate or use or even approve of the term. I find it useful, because it undermines the
    idea of pathology in difference and yet does not seek to make us all fine and well, functioning on keel and in sync with whatever the majority of people may be doing or how they may be doing it. Do all differences have a neurological nature? No. That’d be malarkey.

    Do some?

    I think that is fair.

    …but, difference is not disease.

    Thanks Scott W. and Morias for offering other perspectives, though advocating for the viability of mental illness as construct of integrity is, at this point, really problematic. Would it be so hard to just appreciate other people’s own personal stories, and to accept that when they have experienced somehing very bad and hurtful due to a particular idea about who they are or what is going on with them and they have spent literally hundreds of hours working out their thinking about what means what and why that it is not respectful to same, “But, wait, it is an illness because…”

    People who believe in mental illness miss a lot of good perspectives, a lot of interesting stories.

    Thanks again though for commenting, if for no reason other than you did help to prove a few points I was seeking to make.

  • “I know I am not alone in this feeling. I see it in many, this loneliness.”

    “Let’s face it: consensual reality is straight up boring.”

    There is so much to appreciate here, Chaya! Thanks so much for giving me a minute to think about this idea of purpose…and the effects of a lack of purpose.

    Do you really think it “can take trauma to bring it forth” – I have found myself coming to a similar conclusion at times, given how so many people find their direction in healing. I don’t want to believe that we must be hurt in order to fully realize ourselves and part the veil, so to speak. Thanks for bringing up the idea. I’m still not sure what I think about that. Fortunately, I don’t have to know what I think about every single little thing.

    I liked this sentence:

    “This is true inspiration and if we find it in the tunnels, we have found our purpose in life, our destiny.”

    Today I told the story of how when I lived in Portland and went to PSU, I would go down to the basement of the science building where they had this old seismograph, fully functioning and alone in the hall. I would just go down there to watch it.

    Years later, I met another person who had watched that very same seismograph in that very same hall, which was like a tunnel.

    I am not sure why I am telling you this story…other than that I somehow connected your use of the word tunnel to a visual of that basement hall, that lonesome seismograph.

    I’m glad you’re writing here.

  • Hi Vanessa! Great to “see you” around! Thanks for your thoughtful response.

    This ->

    “Yes! Ninety-nine percent of all drugs on the market do not treat a disease process. Of course, this includes all psychiatric medications. Thank you for raising this point. It’s important and is often missed completely.”

    *facepalm* I had no idea that so much of what pharma produces do not actually treat a disease process. Why do we have so many medicines then?

    (Yes, I think I know the answer.)

    (It’s all such a racket.)

    “Why not listen to the people they aspire to serve, and take note?”

    …it’s the authoritarian psychoanalytic expert syndrome, characterized by an inability to understand other’s viewpoints and a severe and persistent insistence that the expert is always right.

    Thanks again for being around!

  • Hi Scott, thanks for that reference. I’ll pull it up sometime. For now, I am pretty content to assume this clinical brain fever catatonia thing is probably not something that affects the vast majority of people who are diagnosed as having schizophrenia. This is not to say that people who have brain fever and catatonia do not matter, they very much do. In fact, I would love to work with people who are prone to catatonia. I’ll check out the article at some point.

    Yes, it was a bit arrogant and immature of me to threaten to destroy the validity of formal literature. I did also say, “…unless the methodology and research design indicate that findings may be reliable, which – in brain behavior research – is extremely rare.”

    So, there is that word, unless…

    In any event, as soon as I read your little extreme case scenario about brain fever and catatonia, I immediately thought of Neuroleptic Malignant Syndrome, which basically is what you are describing, with the fever and rigidity.

    http://en.wikipedia.org/wiki/Neuroleptic_malignant_syndrome

    “Neuroleptic malignant syndrome (NMS) is a life-threatening neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. NMS typically consists of muscle rigidity, fever, autonomic instability,[1] and cognitive changes such as delirium, and is associated with elevated plasma creatine phosphokinase.[2] The incidence of neuroleptic malignant syndrome has decreased since it was first described, due to changes in prescribing habits, but NMS is still a potential danger to patients being treated with antipsychotic medication. Because of the unpredictability of NMS, treatment may vary substantially but is generally based on supportive care and removal of the offending antipsychotic drug.”

    Yeah, good ol’ wikipedia. Given that your citation is from the late 80s, it likely will not be valid…as ideas and understanding of causality have become more clear.

    It seems neuroleptics may cause neurological damage. Isn’t it ironic that they are proposing research to identify neurological problems and yet are simultaneously prescribing neuroleptic drugs that cause neurological damage?

    Thanks again for asking a few questions. I feel that the logic being presented here is pretty clear, so I hope that you will consider these persectives with a mind that is open to the possibility that maybe what we’ve been told simply is not true.

    Thank you, by the way, for being “truly sorry” for the things I experienced. Right this very minute the same barbaric and inappropriate “treatment” is being roughly bestowed upon a lot of people.
    So, I really do hope you are really truly sorry for them, too.

  • Addendum:

    https://www.madinamerica.com/2013/05/nimh-doubles-back-on-backing-away-from-dsm-5/

    They have no idea what they are doing. This is the chaotic and confused part of the paradigm shift, the crisis of ideas and the incommensurability between fact an fiction…where anything could happen and nobody is certain what’s real or what they should do next.

    …there is nothing quite like a system of ideas in crisis.

  • Oh, there’s definitely a line. I really appreciate your comment and questions. I know that you weren’t intending to be disrespectful and I think it’s really important that people try to clarify their thinking on this.

    So, thanks for asking questions and offering up some examples of how the words function in your mind.

    A disease requires a process or something which causes the disease. As the noted invalidity of many DSM categories establishes, there is not process, nor is there a specific “treatment” that seems to correct difficulty, only “treatments” that suppress “symptoms.”

    What if we weren’t all supposed to have the same mid-line brainstates and ways of experiencing the world? What about kids with learning differences or the so called “developmental disorders” – do they have a disease?

    No. I think it would actually be more appropriate to say renal disfunction or impairment in renal processing, rather than just kidney disease – though whatever causes that impairment may or may not be a disease and many cases of kidney disease are actually caused by things we put into our bodies. I guess you could say things like “His kidney disease was caused by years of taking lithium carbonate.”

    With actual diseases there are actual causes and actual medical treatments (without quotations) that treat the specific dysfunction that is identified.

    I understand that this is the goal of the NIMH, to develop ways and means to identify markers that correlate with what we term to be “mental illness.” They will then assume that the marker is part of a disease process and develop pharmaceutical, electrical, or (oh, woe!) surgical methods to “treat” what they have determined to be the “root of the disease.”

    Unfortunately, for the reasons I expressed above (in this essay)

    – that anything having to do with our brains is dependent upon a great many variables and that
    – our brains change

    …the “This appears to be a trait linked to experiences that are considered to be the result of what we call mental illness, so this trait must be a part of the disease and must therefore be treated or (oh, woe! ) eliminated.” approach to consistent differences in human modes of experience is a very dangerous direction for science to take.

    None of this to say that people do not sometimes have tremendously challenging states of being or recurrent difficulties with stress regulation, processing, or any number of other things. It is to say that it is not helpful to think of our ways of experiencing the world as a disease, when there is no disease, and that medical intervention is not – in the vast majority of cases – going to “fix us.”

    In the cases of disorders such as those on the autistic spectrum or ADHD or learning differences (which many people with bipolar and schizophrenia diagnoses often “have”) it is absolutely not appropriate to deem difficult elements of experience to be a disease or to attribute poor prognosis on the basis of presentation at any particular point in time.

    When I look over my medical records from my last forced hospitalization, I see that they noted that I was “unkempt, and smelled of body odor…that I was speaking rapidly and expressing grandiose beliefs, patient made statement that she ‘just processes things differently and that it is sometimes difficult for people to understand her…patient became agitated in requesting an item from staff (my bra, because the hospital shirt – which left my arms uncovered which I hate – was transparent and I did not like the feeling that male hospital staff were looking at my nipples) and had to be forcibly medicated (which required the same male hospital staff to pull down my pants)

    (I remember all this quite clearly, in a multimodal style of visual memory, sound, and my conscious reality (that I was in the hospital because following a period of grief and an increase in a serotonin reuptake inhibitor and in the context of severe and persistent psychosocial duress in the form of threats to my child custody in the wake of a not-great divorce, I experienced a protracted extreme state characterized by hyperanalysis and heightened sensory attunement (all supported by the neurochemical effects of fear and autonomic responses) that resulted in a complete and total deconstruction of the world as I know it and all sorts of (fear driven) thoughts and inspirations ensued…and that I wasn’t dangerous. I was scared and sad because my family – who “gets nervous” when I talk about postmodern deconstruction or anything having to do with the word meta or really anything all, because I trade in big ideas that are not appropriately sized for the context and ascribed purpose of my life. They had sent 3 men to my house to wake me up in the evening and put handcuffs on me and take me to the hospital and my wonderful sensitive brilliant children were scared and I could not tell them that I was okay. I knew what consensus reality was and I knew that it was terrible.)

    So, I remember all this quite clearly and I have to say, it’s all in what is made of it…of who we are and why we are and what is and is not okay in our lives, what we must tolerate and what we must suppress.

    Psychosis (unless it is drug induced) does not happen out of nowhere. It is a complex state. I was not sick. I was scared and stressed. I appeared sick, because that is what was seen.

    I am not one who “had an episode” but before that was “okay” and now is “okay” – I have been dealing with this thinking feeling contextualizing stuff since I was very young.

    To get back to your observation of catatonic schizophrenia. In my opinion, catatonia should not even be considered to be schizophrenia. Maybe it’s a variant of Tourette’s in mechanism, which is quite possibly exacerbated by a profound death of hope and an inability to be consciously present in one’s life without experiencing an enormous amount of pain and confusion.
    I think trauma causes catatonia. As for the fever. Hmm, I don’t know that that happens. Maybe the heat was too high up or maybe it indicates a breakdown in regulatory systems, due to duress or stress reinforced rigidity in neurological activity.

    All of the horrific things that we associate with mental illness can largely – for most people – be avoided….if these experiences are diseases they are afflictions caused by abuse and trauma. Yes, some people do have actual and real troubles with their brains.

    I know a person who “has Tourette’s”. He is homeless and extremely affected by his condition. To be honest, his presentation appears similar to what we typically think of as “being insane” – incoherence, tics, intensity and communication that is completely out of context…but he’s not insane.

    He knows that he has to stay to the edges of things or he gets too agitated and his Tourette’s is triggered.
    He’s got a lot of struggles.

    He does not have a disease, however. He has a brain, that is likely quite sensitive and complex around the sound and language processing areas. I really don’t know.

    I do know that difference is not disease and that madness – like any human experience – has many dynamic algorithms that can be applied in efforts to map its causes and outcomes. However, it is impossible to conclusively determine causes and outcomes across individual experiences, because life (like “mental illness”) is so mysterious. (It’s not really, but the specific odds and ratios are statistically difficult to specifically determine in causal analysis and extrapolation of potential events, due to the multivariate nature of the human condition across different life domains.)

    I do not think that we have diseases or illnesses. We have experiences that can make us appear and feel sick, but that does not mean that there is an underlying disease process. Given the adequate opportunities, resources, and support, the dysfunction or overload or dysregulation that may or may not be associated with manifest psychosis can return, quite quickly to baseline homeostatic states…which may or may not include interesting thinking, differences in feeling, sensory issues, and/or social and occupational difficulty…all of which can be attributed to individuation in feature and function as such things relate to the social, cultural, and economic context and unique life/self circumstances in development.

    So, there are a hundred different ways to look at what the significance of neurodiversity may be as it relates to mental illness. What I do know is that it is a grave injustice to assume that there is no good that can come of experiencing the world differently and that the struggles we may have are the result of a disease.

    The struggles I have are a result of living in a cruel, dysfunctional, beautiful and alive and growing changing world that makes so much sense to me, but that makes no sense at all when people keep talking about being human as a disease.

    Last night, I made the observation that “You have a very sick brain.” (Medical model psychiatry) and “Your brain has nothing to do with anything.” (Psychology) are equally flawed worldviews.

    Like that’s some kind of choice…

    Thanks again for commenting. Sorry this is long and somewhat non-linear. Actually, I’m not sorry at all.

    Feel free to post any citations regarding fevers and catatonia. I will destroy the validity of whatever findings they found, unless the methodology and research design indicate that findings may be reliable, which – in brain behavior research – is extremely rare. Far more rare, even, than schizophrenia itself…which, if Smoller’s research indicates anything, it indicates that a sizeable portion of the American population (the aggregate of those with diagnoses of schizophrenia, depression, bipolar, and people with ADHD and everyone on the autistic spectrum)may be impacted by similar processes. Of course, as I have said, the epigenetic variance that was observed by Smoller could just as easily be attributed to trauma or neuroleptics, which are other traits shared across these diagnostic categories.

  • Addendum of sorts…

    This came out in an email to a friend, and for me it is an important statement to make, for myself. I feel good making it here, because many of the people here have been my friends and I love and respect them.
    ->

    “…so, it’s all been very *illuminating* and has definitely shifted some things in my relations.

    I am, first and foremost, an extremely sensitive unidentified genius, who flexes her wrists when she’s agitated and didn’t know how to speak correctly when I was a kid…before the existential crisis, before the trauma, before the psych meds, and trying to be something – anything! – that someone might love, I was…what I am now, which is just myself…who is a person who will never ever deny the existence of her brain…because I love my brain and I am not ashamed of it and I do not hate it and I am not afraid of it and I am so glad that I am who I am, in large part because my wonderful brain helped me to figure out how to stay alive.

    Note: I do not deny the role of my heart in staying alive. However, when my heart wasn’t in it, my brain moved me through the day, helped me figure out how to get through it. One could say that this is the mind, but the mind (in my mind) is intrinsically linked to the brain, as well as other aspects of our physical selves. If the mind is, in part, as we imagine it to be, then this may well be true…for me.

    Note: I do not deny the role of metaversal forces of knowledge, benevolence and cleverness in my life and narrow escapes. However, I appreciate how well my brain made sense of all those little inklings and impulses and paths quickly crossed.”

    So, that’s that. I love my brain…and it is a really wonky brain sometimes. It’s a good brain though. It holds my whole current big huge moment-to-moment life and a hundred different possible futures and almost everything I’ve ever paused to consider, as well as vast stretches of learned history and imagined pasts. It can think about 4 different things at once and maintain multiple orientations to reality and perspective. It’s an awesome brain, even it is pretty bad with names.

    I never really got to appreciate my brain much, because I was too busy being angry at it, or hating it and nobody ever told me much of anything about it, other than it was a shame that I was “so smart, but had so many problems…with the, you know, chemical imbalance.”

    So, I’m sorry if anything “neuro” related is upsetting for people. I understand that some negative associations have been forged, and that the emotional reaction caused by attentive and compassionate knowledge of the effects of brutal, invasive, grossly experimental “brain science” may create a rigid associative meaning that makes neuro a deeply unsettling term.

    I’m sorry, but what Insel does not determine the definition of a word to me. He can’t make words like “brain” ugly, just because he uses them in a flat, ugly, menacing way.

    I do have serious concerns about investing in a worldview that assumes that our brains do not impact our experiences in some ways, which are highly individuated and which are variable in their effects and in their outcomes, given culture and privilege.

    So, anyway, thanks for letting me post my casual I Love My Brain manifesto here.

    I hope you all have a great night. I have got to go to sleep, or tomorrow my brain may not function so well as it otherwise might.

  • That is a great idea!

    I have often wondered what might be possible if people spent the same energy trying to communicate these ideas with people outside of the circles of dialogue as they do debating and expanding ideas amongst ourselves/one another…well, a lot could be said.

    I am going to make a personal commitment to try to conscientiously comment on at least one ill-informed article or comment thread per every couple of days…

    If anyone wants to start a club of some sort, to post on non-allied sites – in a sincere and not-trollish way – message me. Some sites are triggering and even nauseating to just glance over and people can be very nasty when their ideas are challenged, even if they are challenged kindly.

    @researcher, that’d be an interesting research project: Psychiatric Human Rights, Cyber Activism and the Impact of Strategic Messaging in the Context of an Evolving Dialogue.

  • David, I really can’t begin to express how much I appreciate your recognition of the reality of these functions and features as meaningful within people’s lives and experiences. I always pick up a substantial reading list from your comments and good insight into the existing articulations of ideas which are complementary to my own formulations of figuring. I appreciate you.

    I don’t know why more people aren’t interested in this topic, how the brain and body relate to our subjective realities of experience. That doesn’t make sense to me.

    It’s alright though, I just spent the last hour on the porch talking to a friend of mine about the possibility of particular styles of cognition relating to the spectrum of human distress, frustration and despair. Here is my investment in neurodiversity: I know that I process information differently. I am extremely analytical and exceedingly logical. Although, as I mentioned, psychometric testing is fraught with complications, limitations, and grey areas, consistent placement at the far end of the spectrum on some processing related measures – across a span of decades – indicates to me that I am a verified, certifiable problem solver and synthesizer of information. That is just how my brain works.

    So, I was just sitting out on the porch and talking with my friend, about neurodiversity and the dis-connect between the fact that we have brains (and bodies) and our idea about our experience. We came to all sorts of conclusions, including a theory that people with analytical tendencies who are denied the opportunity to be affirmed in the positive aspects of their innate propensities and who have no context for understanding or outlet for utilizing their inclinations and interests may experience manifest distress in the form of frustrations, anxieties, obsessions, and in cases of severe and protracted limitation of self expression, may experience a crises of analytical impulse, stemming from an intolerance for cognitive dissonance and the profound grief of not having any space in our lives where we are understood, believed in, or empowered to be who we are to think as we think. Of course, that’s just a theoretical neuropsychological theory of human distress that pertains to why, perhaps, neurodiversity is worthy of consideration if we genuinely care to understand why people struggle and the nuances of the ways that they may struggle. Nothing is ever so simple as one factor or attribute.

    I work with a lot of very poor and isolated people who have never in their lives had a chance to explore their intelligence or their personal relationship with how they experience the world. Many of them are homeless and struggle with substance use/abuse. They have diagnoses ranging from depression to schizophrenia to ADHD to Asperger’s to bipolar…and you know what, they are – by and large – all brilliant thinkers and deeply sensitive people, who notice details and ask questions and struggle to find resolution in the meanings that they make of their lives.

    It is amazing how much recovery occurs when people are empowered to reflect on how they think about things, how they process information, how they learn and sense, react and respond. Because we use WRAP as a core curriculum option, many people do figure out what they need to do to stay well and learn what supports them feeling the way they want to feel, do the things that they have decided are important to them. They are able to self-identify what works for them and what doesn’t…and they get better, as measured by the fact that they are able to express happiness and gratitude for what is.

    This is probably a little rambling. It feels that way. It’s been a long day.

    Again, I do appreciate that you seem to understand where I am coming from with this and why it is important to me. A lot of people have similar experiences and a great many of us are psychiatricized. I know that meaning making and analysis is a huge part of my experiences of madness. Yes, emotional distress plays a role, and yes spirituality was key to me this last go around…but the way I process information contributes mightily to how I experience the world, including spirituality and emotion, because none of these realms exists in isolation from another.

    You have a very eloquent understanding of stress mechanisms and the interplay of perception of risk/safety and stress reactions. Again, I don’t understand the dis-connect between subjective fear rooted in real or perceived threat, the neurochemical havoc of acute or chronic stress, and the manifestations of hypervigilant, “paranoid,” or “delusional” states. For analytical thinkers, I think that stress/fear can trigger a state of extreme attunement to one’s environment or to persistently troubling or saving ideas, as a protective mechanism and a means to try to resolve the sense of threat.

    I agree that the mind is far more than the brain. I think that the mind resides in conjunction with whatever it is we call spirit…somewhere in our matrices of electrical impulse, frequency, and vibration…which don’t exist in a vacuum, but rather are connected to all things living.

    I am actually a little worried that the NIMH may find a genetic “marker” that can be tested for re: autistic spectrum disorders or other modes of neurodivergence. It makes me feel sick to think that if they found such a thing, that they would somehow try to disable it.

    Can you imagine a world with no analytical thinkers, pattern finders, or sensitive problem solvers?

    Yikes.

    Thank you again for commenting and for appreciating these perspectives for what they are…my understanding of who I am and how I work, which I know does not stay the same.

    For example, after my last crisis, with all the medication and the stunned trauma…well, I literally could barely think at all.

    Thank goodness for neuroplasticity, healing, our ability to make new paths for ourselves.

    Thanks again!

  • Hi @cannotsay, I agree. I was quite pleased thinking about how completely it may fail as I wrote this.

    It may behoove “us” to become involved in what’s happening at the NIMH, not because we approve or even because we want to feel self-satisfied when they find nothing, but because the NIMH approach is what is happening and the most effective way to influence or mitigate something that is happening is to participate in it…somehow? Maybe I’ll just send Insel a link to this blog and tell him to please stop referring to epigenetic variations

    (such as those found by Smoller, et al – which suggest an epigenetic trait related to calcium channels that is purportedly shared across FIVE major DSM diagnostic categories)

    as “aberrations” or “mutations” and to kindly remind him that we are constantly evolving and it is infinitely possible that the neuroleptics prescribed across diagnostic categories create atypical genetic features…or something like that. Advise him that our brains are not diseased and that what is expressed at one point in time may not necessarily be our fixed genomic content.

    That sounds like a fun little email to send before I pick the kids up from school.

    I wonder how much of what is manifested in madness is the need to feel a sense of small power to impact circumstances that affect our lives. I guess that’d vary from person to person, like everything.

    Anyway, thanks for the song link and for hangin’ out ’round here. Definitely keeping the faith.

    Truth will prevail…and then we just have to worry about what sort of dreadful potentially eugenic tragedy they may make of it.

  • Yes, neurodiversity is a term that is sometimes used by people that have been diagnosed as having autism or other processing/integration differences.

    Is there a problem with the idea that some people may identify as being neurodivergent?

    I resent that a term that is used as term of empowerment and affirmation of individual strengths is termed “malarkey.”

    Interestingly, that is the same term that was once used here to characterize my assertion that the practice of defining another person’s experience for them was the precise mechanism that is used by psychiatry in their presumption of authority to impose meaning.

    “Well, that’s just malarkey!”

    It absolutely is not malarkey that millions of kids who are identified as having autism spectrum disorders, learning differences, and sensory integration issues are just as at risk (or moreso) for abusive psychiatry as psychosocially wounded adults in existential crisis who, once they escape psychiatry and have a chance to explore who they really are it turns out that they are absolutely fine and have no struggles outside of the usual challenges of being human?

    Yes, the psychosocial element alwaysalwaysalways contributes to our human experience and the outcomes of our experience. Nonetheless, not everybody functions the same way (thank god) and not everybody can fit into the same little neurotypical paradigm…which is just as rampant in supposedly conscientious circles of dialogue as anywhere…with these suggestions that people are all the same and psychiatry messes us up or our emotional distress causes challenges for us or we are psychosocially maligned within our lives…but when those things are resolved, everything is hunky dory and *presto* recovery!

    What about people who really, legitimately do experience the world in ways that are tough for them? Sensory integration challenges are real, as are learning differences…and both can cause a lot of struggle.

    Do we tell these people (myself among them) that when they cannot hear things correctly if more than one person is talking or when they do not feel social attachments in ways that conform to social norms or when they cannot tolerate fluorescent lighting or when certain tonal qualities cause a total affect defensive mechanism…that their challenges are all a matter of emotional distress or spiritual discouragement?

    That seems to me to not honor the reality of individual experiences, and to not respect the reality that many people do struggle with regulation and integration of information and stimuli. Autism and Asperger’s and ADHD and all the rest are in the DSM, just like bipolar and schizophrenia…and people with these ranges of experiences are just as vulnerable to misinformation, medicalization, and psychiatricization as any “depressed” adult whose experiences may well be attributed to social and psychological or existential, emotional causes.

    “the psycho-social causes of mental distress” are not the end all be all. Even those experiences are not limited to subjective affective conceptualizations. People who have experienced significant emotional distress understand that with those experiences, stress is created. Stress is not an idea. As Laura noted in her last post, stress involves actual chemical processes that impact the functioning of our bodies…and brains.

    Are people so appalled by what the industries of exploitative hypermedicalization have made of our experiences that they are loathe to even admit that we actually have brains and neurological systems?

    Neurodiversity is a concept that has empowered a lot of people and it doesn’t seem particularly respectful to suggest that it is a pawn of the rhetoric that supports medicalization of our human condition. There is nothing within the ideas presented here that suggests that neurodiversity is a medical issue.

    Quite the opposite…

    Thanks for your comment and for reading. More and more, I find this reactive broadbrushing denial of the brain to be alienating and not particularly relevant to my experience as a human being who has a neurological system that impacts the way I experience and understand the world. I always feel a distinct chill around here when I acknowledge that we have brains…and that I personally find the brain to be a pretty amazing and complex part of our human existence, which does affect our subjective experiences, though it is no way solely responsible.

  • Much respect! Thanks for being here. It is clear that you have made some some weighty decisions and I applaud you for the courage that it takes to stand up for what you believe is just, in the face of threats to your livelihood.

    I would love to learn more about your Habits curriculum. I work in a recovery education center and have also found that many people appreciate the view that we can develop individual skillsets and perspectives that may help us to navigate our experiences with more empowerment and, ultimately, hope.

    Hey, if work in the system doesn’t pan out, maybe you could explore the luxurious lifestyle of living on student loan surpluses while you research psychoeducational program development or something like that. 🙂

    I really enjoyed your writing and appreciated your seeming tenderness for your former alias, Marcellas. Online identities are certainly strange aspects of ourselves. I personally find transparency to be quite freeing and hope that the transition to being Michael Rock goes well!

  • “very very expensive characters called psychiatrists”

    I just asked, on another comment thread, why it is not illegal for non-specialized (or, specialised, in the UK) practitioners to prescribe drugs that act upon the human brain. So, what are the trainings and certifications that psychiatric prescribers have to have before they can prescribe psych. Meds and where does conscientious prescribing and harm reduction come into play?
    This is not to say that psychiatrists, as a rule, know about the brain (many evidently do not) or that psychiatrists, as a rule, practice anything like conscientious prescribing or harm reduction.

  • Thanks so much for bringing this dialogue to MIA. There has been a lot of talk lately re: “What about the people who…?”

    I actually identify far more with the language and concept of neurodiversity than I do with anything like “I was totally fine and then psychiatry duped me into believing I was sick and, look, now I’m all recovered!”

    I am definitely not someone who is quick to dismiss my brain…or my mind…or my heart.

    I know that aspects of my experience are directly related to the functional tendencies of my neural networks and that my brain contributes to my experience, subjectively for better and for worse. However, I do not have a disease.

    I do not find misinformation and industry chemicals to be helpful to me. What I make of my experience and the circumstances of who I am and how I function at any given time are not medical issues.

    Neurology changes. We are constantly evolving.

    If people want to explore learning styles, sensory integration, stress reduction, nutrition, somatic healing, mind-body medicine, etc. – wonderful! All those things may or may not be helpful.

    None of those things are anything that requires medicalization or medical treatment or even much further research.

    It’d *be nice* if the NIMH focused its funding on making non-medical evidence based practices and alternative healing modalities more widely available, rather than wasting money trying to find a disease process where there simply isn’t one.

    I do honor whatever sense a person might make of their life at any particular point in time, but I fail to see what good comes about from considering oneself to have a disease, even in cases where struggle with experience is quite real.

    Thanks again for discussing this. It’s really clear that biopsychiatry is under some very heavy common sense scrutiny. Medical model approaches to human struggle don’t stand up to scrutiny, or common sense.

    Thanks so much for asking questions and for answering them…building ideas, building dialogue.

    Much Appreciation,

    Faith

  • “We are embedded in the social service network and the insurance system. This is all reliant on some sort of process to allow us the get paid for our services. That process is based on diagnosis.”

    Given that the DSM is being publicly acknowledged as, simply put, bunk…well, I guess these systems of service provision will just have to change.

    Thanks for not buying the DSM!

  • Just a quick thanks for navigating all of that and I definitely appreciate your (Matthew’s) recognition that a lot of young computer aficionado’s have gotten pegged with psych labels.

    Also, big thanks for ATG’s astute analysis on the misindentification of anything related to psychiatric human rights as being somehow affiliated with Scientology and what that means to Anonymous.

    I hope that soonsoonsoon the folks invested in global liberation and justice movements will recognize that, in many ways, corporate mental health and psychiatry are (in the Western world)among several keystones that help to hold the current economies and cultures of compliance in place. There seems to be more developing awareness of this.

    Thanks again for keeping things up and running!

  • What I most took away from this post is your abundant compassion for people who are faced with the need to reformulate their understanding of their lives.

    Your recognition of how truly difficult it can be to imagine a new self and a new potential future is deeply kind.

    May all those people you want to hug find in their lives a light such that which you hold.

    You’re right, you are not dreaming that dream alone…and all evidence indicates that truth does indeed prevail.

    Thanks so much for being out there and sharing your journey, your process, your wisdom and your heart so generously.

    Love, FRR

  • “…because the evil side knows I might have good impact if I figured out what I was doing.”

    I use this same sort of conceptualization to understand tough times and get myself motivated to stay abreast of dark forces. In a lot of ways, I now think about the ins/outs of “mood” and energy and inspiration that were previously characterized as cycles between “mania” and “depression” as being a process of seeking of integrated spiritual equilibrium and finding my true direction. It is actually really helpful to me to think about what I experience as “dark forces” as being an actual thing in the multiverse, that I can then fearlessly recognize and navigate, thwart and overcome. Compassing.

    I appreciate that you share so much of your thinking and feeling and framing here. “I probably would have called you if I had your phone number.”

    haha! Feel free to get in touch anytime!

    Thanks and onward…

    love this -> “fitting every loose thought and emotion and impulse into the structure of life shaped by hope.”

  • Hey, Amanda – Thanks so much for sharing your survivor story here. I especially appreciate your thoughts on thoughts and evolving, accepting.

    So much truth in this ->

    “If I were to conceal my thoughts and feelings from my consciousness, I would never understand and appreciate myself, and I would never feel safe in the world. I am grateful for intensity, for passion, for anger, and for fear, for reminding me every day how fascinating it is to be a human being even when it terrifies me.”

    “Fascinating” has saved me more times than I could ever count. There is a lot of comfort in, “This is just really weird and absurd and beautiful and awful. What’s going on around here?”

    I remember having similar reflections (no pun intended, well maybe a small pun) w/ the mirror, “Weird that I have a name and I’m, like, a person or something and people see me, but they see me differently than I see myself…” Toothbrushing as existential endeavor

    Anyway, glad that you survived and showed up around here! Way to think and feel! Bizarre, always, is a matter of context. Nothing is really very strange in a very strange world. Keep writing and telling your truth.

    I look forward to seeing ya around!

  • Anyway, modern capitalism and communism aren’t so different…the power structure/relationship between the state(controller of the economy) and the people (consumers in the economy) have a lot of the same basic elements.

    I wonder about the causal relationship between poverty and “mental illness” – which comes first and why.

    Thanks again, Chaya.

  • I am really appreciating the language of “colonization” and de-colonization that I see around the Hearing Voices Network. Those words are such powerfully true descriptors of what is happening between industry, idea, and individual, power, meaning, profit and effect.

    Thanks for framing it as what it is.

  • Thanks for bringing this to our attention. You’re right, it’s absurd, insulting even. The side effects and warnings on risperidone for children plainly advise things like “your child may have difficulty climbing stairs”…not to mention endocrine havoc and all the rest.

    Regulating gum, huh?

    Thanks for the phrase Big Gum – that’s a good one! (Out of curiosity, who is Wrigley owned by now? Oh, Mars, Inc.)

    Here is Big Gum’s parent company, Big Candy:

    Mars, Incorporated is an American global manufacturer of confectionery, pet food, and other food products with US$30 billion in annual sales in 2010, and is ranked as the 3rd largest privately held company in the United States by Forbes.[2] Headquartered in McLean, unincorporated Fairfax County, Virginia, US,[3][4] the company is entirely owned by the Mars family. Mars operates in six business segments in the US: Chocolate (Hackettstown, New Jersey), Petcare (Franklin, Tennessee), Wm. Wrigley Jr. Company (Chicago, Illinois), Food (Los Angeles, California), Drinks (West Chester, Pennsylvania), and Symbioscience (Germantown, Maryland).[5][6]

    Symbioscience sounded suspicious and interesting. So, I looked a little further, and I found their home page. Apparently Symbioscience is an industry that works on canine DNA testing, cocoa flavenols, and artificial horticultural substrates.

    http://www.mars.com/global/about-mars/mars-pia/business-overview/mars-symbioscience.aspx

  • In case anyone else is wondering:

    diphtheritic membrane: a false membrane characteristic of diphtheria, formed by coagulation necrosis.

    …which could serve as a metaphor for some of the distorting lenses in “science” as created by collusion between psychiatry, pharma, and the high-priced research industry.

  • Thanks for seeming to understand where I was coming from with this. I guess both neuroscience and psychology can be reductionist.

    This comment ->

    “…analogy with economics is a good one, because like psychiatry, it fundamentally concerns human beings, their desires, fears, needs and so on. All this is a matter of interpretation which scientific methods can’t really cope with.”

    …is very apt. Science would have to break out the multivariate algorithms in a pretty big way to try to “explain” madness…but, they’d need artists to really help them to see just how complex and beautiful and just-plain-follied the human experience is.

    The more I have thought about your essay, the more I really love the storytelling and use of creative/perceptive process in your addressing the failure of neuroscience.

    Can we change our experience by changing our perceptions, by changing our stories?

    One of my greatest joys is playing around with the mystery, coming up with alternate endings, exploring the shadow protagonists and subtexts in my own narratives.

    Thanks again and I appreciate the leads on other lines of thought and creative work…

  • “And when we call someone insane isn’t it because we feel insane around them?”

    I love this question! I also really appreciate your observations re: sensitivities and meeting our individual needs. It seems like a lot of the distress that is called “mental illness” may – for some folks – come about from the imposition of lifestyles and lifeways that do not honor individual proclivities, sensitivities, and needs for peace, quiet and expression.

    Which comes down to power…who gets to decide what is desirable and functional for us?

    Good call, RMates, re: the privilege of “eccentricity” in relation to the pathology we often see applied to those who do not, will not or cannot conform to the expectations of normative function in the working and middle class economies of culture.

    Thanks so much for sharing your voice here, Chaya…much appreciated!

  • Richard, I love this symbiosis of inspiration and mutual encouragement. Thank you for inspiring me. I cannot think of a higher compliment than the suggestion that something I wrote helped someone to believe in the possible.

    “…human connectedness in a world that demands that we all join together and become creative agents of change.”

    …and with that, we are part of something far larger than the psychiatric human rights movement…we are a part of the core of humanity, rising up like lions from a long slumber.

    I have noticed that even in decidedly non-revolutionary circles and settings, things seem to be shifting, shifting, shifting. That might just be me, though…what I look for, what I focus on…keeping an eye out for potential, for what might be possible.

    Thank you for expressing appreciation with such generosity and thank you for all you have done and do, in your work and in your being.

    In Solidarity,

    Faith

  • Thanks so much, Ted…it means the world to me that you understand so much of what is in my heart. Kindred spirits, indeed.

    In Solidarity and with Love,

    Faith

    Good luck in SF! I’m so sorry I won’t be there. However, I will be there in spirit…

    (…and given my belief system, I really will be there!)

    The most beautiful thing about this movement is the way that we all carry one another and the unvoiced masses in our hearts.

  • Thanks, Frank! You know what’s really cool? That dysfunctional systems inevitably destroy themselves…and there are a lot of people outside of the systems of power that have little to lose by following their hearts.

    I also really do believe that, in the evolutionary span of culture and consciousness, a full-fledged re-visioning is just about imminent. A lot of folks might lose their minds in the process of a changing world…fortunately, there are a lot of people who know how to navigating shifting reality.

    Onward, outward, upward…

    Good luck in SF! I’ll be there in spirit!

  • Thank you, Mary! It is a great hope of mine that by the time I am 65 I will be a formidable revolutionary!

    Yes, we all have the goodness and we all have the gifts. I have found so much unity in the deconstruction of the ideas that keep us apart. The wonderful thing about human struggle is that it is something we all – every single one of us – go through in our own way. David Oaks said, last May, “We’re the 100%!” and that is just so true.

    Thanks so much for the fist in the air!

    In Solidarity,

    Faith

  • “…why don’t people qualify sometimes how they get patients or students?”

    It seems like then the flaws in research and education would be apparent and the whole medical model would be apparent as the sham that it is?

    As for feminism, I think that a lot of the same power dynamics in patriarchy are evident in psychiatry and in the psychoanalytic traditions.

    Thanks for reading and for asking questions. It’s really a shame that people have devoted their entire careers creating a body of literature that is ultimately useless, unethical and fraudulent.

  • Thanks for bringing this up and presenting these ideas in such an engaging way. I loved the part about “…how is it possible for this image to be in front of me?”

    Questions like that can really pull subjective reality and orientation into a different focus. This is a great essay and I appreciate the reference list.

    I do a lot of dancing around neurodiversity/neurodeterminism as it relates to the impact of free will, association, and subjective significance. Of course neurology cannot explain madness…but I don’t think, either, that madness is all a matter of thought, feeling, psychology and significance, an issue of consciousness.

    I do not think I would experience what is considered to be madness (as I experience it) if I did not process information in the particular way that I do. I do think that neurology can explain some aspects of my experience of madness. However, I can’t apply my experience to other people’s experience.

    I know that the way I process information is not (in any way, shape, or form) a disease. I know also that while I cannot ultimately and completely change some structures of my processing style and tendency, I can change a great deal about how I react to what I think and feel and that, through this, my experience changes.

    I think one of the most distorting aspects of neuroviews of human experience is that these views suggest a fixed state, as if aspects of our experiential framework cannot be changed, as if our synapses were written in stone.

    It always feels so taboo to talk about neurology and things like processing and synapses around here. However, there is a whole neurodiversity movement, comprised largely of folks with autism-related diagnoses and modes of experience like synesthesia. Neurodiversity acknowledges that, yeah, some people do process differently and that is, in fact, awesome, but that neurodiversity can have its challenges and that those challenges are real.

    A lot of kids dx’ed with autism spectrum or other processing based “disorders” are subjected to the same abuses (and the same neuroleptics) that people with diagnoses like “schizophrenia” and “bipolar” are. So, what is our position (I guess as a movement) on situations where, yeah, a person’s brain really does seem to work a little differently?

    We can’t always just say, “Oh, you have free will.”

    The power of will is variable, as is access to perspectives and skills that support mindfulness and conscious, reflective participation in shaping experiences. In some ways, while free will is a (supposed) right, it is also a privilege.

    By the way, the writing about the first time you saw the Shell-shocked Marine is phenomenal.

    Thanks for introducing that photo and sharing your recollection of the first time you saw it.

    Both speak volumes.

  • “Liberation rather than cure could be the answer”

    Liberation as cure.

    Yes, it very well could be, for everyone. I think you’re spot on in your thinking about the shortcomings of any practice that reinforces the dynamics of clinical authority and pathologized meaning. The evidence-based practices re: psychosis largely characterize experiences as undesirable, to be tolerated, reduced and ameliorated, not to be honored and explored as some interesting and challenging aspect of our human experience at that particular moment in time (a moment which can admittedly sometimes last for years). Yes, for some folks what they experience is very much undesirable and no fun to explore at all. To be honest, emotional literacy, dialectics, and distress tolerance skills are pretty essential to me.

    I am playing around with draft outlines for a potentially crowdsourced manual and skill-book re: navigating “psychosis”, what is helpful to know and to have the opportunity to think about, learn about, or speak of. I work in an REC and need to do a thesis. I want to help create liberation opportunities for folks who experience psychosis or some experiential variant thereof. I want something like that to exist. Maybe it does already? Accessibility is important.

    Although @ work we (particularly the peers) are inclusive and supportive/non-pathologzing of folks with experiences typically characterized as clinical psychosis there is not a distinct educational or mutually supportive space for people to really explore their experiences and lives.

    Anyway, thanks…and thanks, @…poet, for bringing up the complicated issue of people who really are…what? Actually struggling in ways they don’t deal well with, can’t deal well with…are just really…what?

    Yeah, there are some hornets nests in that topic.

    I think Joanna made a great observation about “recovery” and folks who may find their place in empowered groups. I have experienced and seen some straight up sanism in some empowered circles and that’s fairly perplexing to me. I feel like, sometimes, I am inadvertently perpetuating some candy-colored recovery world. It’s weird that the particular trajectory of my life could be characterized as ableist…even though I can’t work a 40 hour a week job and have never been successful in that endeavor. I literally cannot. My sensory system and stress situation gets overloaded no matter what I do and I get to the point where I cannot speak and it is not good. I would clinically be considered to be delusional most of the time, but I am awesome at double-booking and keeping it in all in check. I cannot recover from the way I process stimuli and information, nor do I necessarily want to. However, I have changed the way I experience and contextualize my cognitive, social, emotional and sensory situations.

    So, we all are here and there, just making our own ways…often the best we can.

    I think these are important things to talk about.

    Very nice poetics, er…Dr. May?/Rufus…matter-of-fact liberation blended with elements of strong appeal for those whose ears are attentuated to the narrow measures of clinical prose.

    Thanks for good reading and thinking.

    This, in particular, was very important for me to read at this particular moment:

    “The subtext of much around now about ‘taking responsibility’ [as though no one has till now?], and ‘deciding’ one afternoon to not be an XYZ is not encouraging. Survivors self-managed and acted as role models to other before the rise of recovery and being ‘in recovery’ is not the only hope we can offer each other. Those you won’t see at conferences might also like to know that there are others like them, maybe getting by or hanging on, not recovered, maybe not attaining the life ‘milestones’ typically held up as recovery. Knowledge of endurance and different types of lives are also helpful.”

    This -> “Survivors self-managed and acted as role models to other before the rise of recovery and being ‘in recovery’ is not the only hope we can offer each other.”

    Thanks again…

  • Thank you again, Dorothy…

    I’m already a much more full person, just still re-integrating and sorting out what is true of my heart and why. I’m actually thankful that I had a chance to experience what I experienced, because I really appreciate my life now and I like who I am…so, I can’t really figure out how I would be who I am if I hadn’t lived what I lived. I wouldn’t be doing what I’m doing, and I like my life…so, it all works out.

    You’re absolutely correct that balancing family and activism can be huge challenge. Because of the way my family is structured, I have some stretches of time when they are off doing other things with other people, and so I have figured out how to do x and y on days a,b, and c and save z for days d and e…

    I am really enjoying figuring out alternative modes of activism, like writing stories and making art…how to bring activism to things I do anyway, so that it doesn’t become consuming in ways that are not sustainable. Finding people that I work well with is important, too…many hands make light work and things done alone seem like they are not so effective as efforts undertaken in cooperation.

    Thanks again for all your encouragement and your steadfast kindness.

    Love, FRR

  • Stephen – Ha! Way to prove ’em wrong! Aside from the desire to contribute well, for the sake of sense and goodness, a big motivator for me is simple defiance, a flat out refusal to live by the low expectations of others…and, sometimes, the low expectations still held by aspects of myself. I have to defy myself sometimes.

    I think you are incredibly gutsy to do the work you do, to walk all those fine lines and to re-inhabit that space in an empowered role. I work in the system, too…but not at a hospital. I think I would have a really hard time being in that environment.

    Thank you for inspiring me and for sharing so much on these pages.

  • Addendum: The past 24 hours have brought up so much for me. I have had to face the fact that in spite of my awesomeness and defiant accomplishments, I still have remnants of crushing self doubt and deep fears of not being accepted.

    It can be truly hard for people who have been psychiatricized to undo the self-undermining tendencies that come about from being second-guessed, psychoanalyzed, doubted, scorned, and judged in our interactions with “professionals” and in family+community.

    For me, one of the biggest barriers to activism and empowered participation in the world is the struggle to believe in myself and in the worth of my voice. Right now, I am angry. I am an intelligent, compassionate, lovely and creative person…and psychiatry really bungled my self-concept. I guess it takes a while to undo 20+ years of psychiatricization, to decolonize my mind and heart.

    I really appreciate that MIA gives voice to people who were de-voiced. Thanks for being out there you all.

    “I WILL BELIEVE IN MYSELF. I WILL BELIEVE IN MYSELF. I WILL BELIEVE IN MYSELF.”

  • Thanks, Dorothy. I think – among other things – the intensity of the year, all the transformation that has happened and the friends I’ve made…well, it all sort of walloped me for a minute.

    I’m off to bed now…tomorrow is bound to bring more change. Everyday does…

    Here’s to good dreams!

    Love,

    FR

  • Hi Dorothy – I wish I cold hug you right now. You’ve probably gotten the notification from where I flagged you on facebook…

    I feel so upset, genuinely and like out of nowhere, about the fact that Kermit put this stupid post on the page above your narrative (…and Susan! …and that guy Deron’s mother…and all those survivor stories)

    …I don’t want to be way up there at the top of the page. I want to be off to the side!

    This probably all sounds crazy, in the c/s/x sense of the word, but whatever. I love and respect you so much, Dorothy. I mean, I met you on that bus and you welcomed me and you were so generous and so polite and so kind…

    …and I just love you.

    Okay, this is totally off-topic re: activism. Though maybe not…it comes down to respecting my elders, holding story space as sacred, and respecting remembrance of loved ones.

    You offered so much praise for the young activists in your comment replies…and I just want you to know that I may not even be an activist of any sort if it weren’t for the likes of you who helped to build the movement, and all the people who share their stories, all the people that were lost.

    I really hope Kermit will move this piece. I’m being a real pain about it.

    With Respect,

    Faith

  • Hey, thanks, Maxima! This was a really difficult piece to narrow down and pull into focus…I was going off into diatribal analysis about the irony and tragedy of the Revolutionary war and discussions of Locke’s inalienable rights. It was ridiculous.

    Glad you appreciate it and thanks for being out there!

    “Timely and motivating.” <- that's a great compliment for a piece on activism! Thanks!

  • Thank you, Chrys! The work that you all do over in Scotland is some of the first c/s/x activism I learned about, and hearing Ted C. speak about going over there (? seems like a memory I have of a conversation..) seemed like, oh – I don’t know – just really…amazing. I was totally struck with: “Wow, these people have allies all over the place. These people are friends. They care about each other.”

    It’s so remarkable to me how deep the bonds run in this movement and its various branches…all the way across oceans and decades, over generations.

    Thanks for always being so supportive of my efforts to contribute my perspective and story to the mix. It genuinely means a lot, because…well, you know…I haven’t been around that long. Thank you.

    The best to you, as well…

  • Dorothy, your story, your voice, and your beautiful heart are a gift and a blessing to the world.

    Sometimes, when I am driving and just sort of going over things in my head, I find myself thinking about you (because you are a source of inspiration) and then, almost invariably, I think about Susan. It is not lost on me how truly amazing and powerful it is that you have carried your friend with you for so long, and have shared her story with so many, never letting her be forgotten.

    I feel so much hope for the world knowing that there are people like you in it. Really.

    Much Love,
    Faith

    “Kindness and compassion are the sweetest, most powerful medicines of all.”

    There is nothing more true than that.

    Thank you, Dorothy.

  • Hi Marian –

    I whole-heartedly agree with this ->

    “I don’t think anybody ever is the same after a crisis, one or the other kind, and I don’t think it’s the meaning of a crisis, one or the other kind, the meaning of life in general, that we should go “back to normal” achieve a state of unchangeability, of perfect stability in this “normality”. ”

    There is never any going back, not for anyone, crisis or otherwise. We are all constantly changing, building and revising, testing the parameters of our hearts and the details of our identities, adding, subtracting, balancing and erasing.

    While we can’t go back, we can’t help but to carry elements of our past experiences with us. The slate is never completely clean.

    I wonder what new words for crisis we could come up with?

    Life? The trials and tribulations of personal evolution?

    As for the development of the Self, I know that among the splintered boards of my ill-built ship, I found my Self.

    It was that Self that tore the white sails into flags of surrender and then, thinking again, re-fashioned them into wings to wear while dancing on the shipwrecked beach.

    It was that Self that set the charts on fire and re-drew the shape of the world as a wave.

    I think that even in the midst of trauma, the Self still develops. It’s still there. We don’t just stop growing because we get hurt. Our growth may be distorted in accomodation of and adaptation to wounds, but we are always in the process of becoming.

    I guess these are just a different conceptualizations (file under ‘abstraction’) of what Self is and how it relates to so-called extreme states.

    Thanks for being sensitive to misunderstandings about experience and meanings and I apologize if I seemed huffy. Sometimes 2d text-type can muddle the tone of communication.

    Given my personal relationship with concepts of “psychosis” and “reconstruction”, I did feel like I wanted to say simply, “That’s not how it is for me.”

    …and that’s okay. How it is for me doesn’t have anything to do how it might be for somebody else.

    Hope you have a good night!

  • @…poet

    “Our philosophy and values inform us as we engage real world practicality…”

    Who defines our philosophy and values? Who has the privilege of determining what the meaning of “health” is? Who is deemed legitimate and on what basis?

    Are we empowered to make our own meaning, or do we trust the institutional experts?

    How are paradigms created and who gets to create them?

    How does the UK NHS and public health campaign define and communicate ideas about “health” and “mental health”?

    What is the relationship between the NHS and initiatives like this:

    http://joinmq.org/about-us/background/

    @Paris

    Is alignment with deeper wisdom a basic human need, a human right? Do conflicts between our processes of deeper wisdom and our constructed/imposed lives contribute to the distress that is often labelled “mental illness” by the authorities of meaning?

    (Sorry about all the questions…sometimes it is nice to write in question form, rather than in answer form.)

  • Thanks, Paris,for spending some time with Linda’s story, considering it within the broad context. I appreciate Laura’s recognition that at some point, many psychiatric survivors had some degree of belief that they had a “mental illness.” Of course, people invest in these ideas to varying degrees and for various reasons.

    I have a feeling that Linda Logan will probably be drawing some new correlations in her thinking about her story, what caused what and why.

    As for the Goldstein quote re: reconstructing and constructing per labels and experience,
    because I am a person who has experiences that are considered to be on the psychotic spectrum and who also strongly identifies with processes of construction and deconstruction, reconstruction, I feel compelled to say that capacity to reconstruct depends on what you are putting back together and how it got taken apart in the first place.

    Theinarticulatepoet will explain it all in their book.

  • “So saying things like (Worse then herion), could really be considered hyperbole, especially since a lot of people have had easy withdrawal from them.”

    I actually have thought a lot about the language and rhetoric that is developing around coming off of psychiatic drugs. I had a fairly wretched time of it, but not bad as some people have experienced.

    After I came off off of lorazepam, one thing I figured out about how my anxiety works is that negative anticipations tend to lay the foundation for self-reinforcing hideous times and over-focus on discomfort, difficulty, etc. This is not to deny the serious physical health risks involved in psych med withdrawal, or the effects of iatrogenic illness…but, is simply to acknowledge that – to some extent – the way we think about what we are going through, what we expect and fear, impacts what that process becomes for us.

  • Chaya – I am so glad you wrote this. I definitely relate to the feeling of having to breathe deeply and collect myself when people start dropping the words “mental illness” around. I actually find the phrase extremely triggering in ways that are not so great or healthy for me. Like, it just hurts me to hear those words. I still have so much healing to do around language and the associations that certain words hold.

    I have a lot of internal conflict with my ethos of “meeting people where they are at”/honoring individual choice of language and the ugliness of those words in my ears. It’s a tough dialogical space to inhabit, to be ethically inclined to straight-up tell a person that evidence indicates that they are wrong…while at the same respecting that a person’s reality is their reality. I don’t want to be a person who gets didactic on folks, but I really have to tell the truth as I reasonably understand.

    I do, admittedly, sometimes like to use the “mental illness” phrase without quotations in blogpost titles…just as a relevance-hook…then I try to deftly destroy the concept in the body of the writing.

    Thanks again for the writing and for the work out in the world.

    FRR

    Ps. Darby, I really like “crazy folks” – it has the same appeal as “mad” – but, is a little more down home. I think I want a t-shirt that just says ‘crazy folks’

  • What a triumphant reflection on the past few years! I can’t wait to see the new directory and thank you all so much for taking the initiative to make that happen. It is going to be such an important resource.

    I’m so glad you’re out there, doing what you do, being who you are. It’s amazing, the transformation that takes place. There is nothing more beautiful nor more human than becoming who we are in spite of what we are told we might never be.

    Hey, Laura, the other day I did a quick off the top of my head tally of the folks I am aware of who were put into the psych system prior to age 18. I could think of a fair number…but, not so many considering all the kids that have been affected.

    Where did they all go? Where are all the other survivors?

    I can’t wait to read your book…and I hope that some of the adults who were kids in the system read it, too.

  • Thank you so much for articulating this with such straight-forward grace and honesty. Yes, most parents would do anything to support their kids in having a happy life.

    What a “happy life” entails, however, can vary wildly.

    Often, many parents who “love their kids” are not necessarily willing to accept or accomodate various lifestyle choices or personality tendencies that do not conform to their (the parents) version of what “a happy life” looks like.

    Let’s face facts, the culture of parenting in the Western world is not exactly rooted in nurturing happy self-directed lives. For a fairly large portion of modern history, children were a resource or a requisite, labor or status.

    Not all parents want their kids to have happy lives. Some parents just want their kids to…what?

    Be like them? Happy or not?

    How many kids have been tossed into the psych system because they were simply “different”?

    It’s as if the parents are so ashamed of their punk kid, their queer kid, their art kid, their shy kid, their day-dreaming and defiant kid…that they welcome a diagnosis to blame, pitying themselves form of hushed tones and in the slow shaking of their head, mourning the child that will never be…the child that “changed”…saying things like, “I love you, but I hate your illness.”

    They never talk about trauma, never talk about what happened and happens within the family.

    While in the meantime, bright and brilliant sensitive kids are getting absolutely wrecked by psychiatric, emotional, and existential trauma.

    It’s really outrageous.

    What about the parents who trot their cranky toddler around to every pediatric specialist in town for a not-otherwise-specified dx and prescriptions for ritalin and risperidone? They have such long, long conversations in the school parking lots about how hard it is, how very very hard it is.

    People tell them that they are incredibly strong.

    Munchausen Syndrome By Proxy?

    Oh, and the families who have no choice but to pay the rent with their kids’ disability check? What about them?

    I’d say that parents could potentially be an allies or adversaries, in regard to both the movement for human rights in mental health and to their children.

    Thank you for a beautiful and inspiring essay. Keep educating with compassion.

  • I really appreciate this perspective, Sera, and definitely get where you’re coming from. I still find “recovery” to be a useful word in tranformative dialogue, bridging space between the medical model and reality. It does mean to heal and also to take back and so, in ways, it is an apt descriptor of the process that some folks go through.

    “Sometimes the thing people need to recover from is psychiatric intervention.” (Frank)

    More and more,I don’t like framing my life in relation to psychiatry at all…so, I might be getting to the “moving on” and “just living” part.

    Thanks for the good thoughts about the underside of the “R” word and its implications.

    Much respect…

  • I personally didn’t really read this as a “leftist” piece, but then most people would say I am a “radical” (which isn’t exactly true…)

    I don’t think that this is at all a Democrat or Republican issue…it’s a human rights issue. It’s silly that Republicans would be huffy about something so relatively minor as Jack Carney’s politics and rhetoric, in light of the fact that our government is paying billions of dollars for “treatments” that cause harm to people.

    Politics aside, it is definitely our right and our duty to organize against systems that oppress and exploit for the purpose of profit and power.

    I don’t, however, think it is quite so step-by-step easy as Jack makes it out to be – though this is a great essay. It seems to be difficult to inspire and sustain effective and cohesive activism strategy,for the purpose of building a stronger and more united movement.

    I’ve been thinking a lot about this lately…

    Thank you for more to consider.

  • Given the healthy Inuits, perhaps it is not the absence of fruits and vegetables, but the presence of highly processed simple carbohydrates, artificial colors, flavors, and preservatives, etc. in the common commercial pastry which causes…what?

    I have met a lot of people who eat nothing but candy and pastries and drink nothing but soda, and the one thing that they all seem to have in common is that they don’t seem particularly interested in other aspects of a generally healthy life either, like being outside and moving around…picking blueberries with one’s family, like the Inuits.

    I actually do alright if I don’t eat vegetables or fruit, but I have to have vitamin B or…you know…like I said before, the “mood” plummets.

    I’ve read that vitamin B6 is necessary to convert tryptophan into serotonin. Is that true?

    (Note: In acknowledging that I take vitamins to support serotonin function, I am not suggesting that I have a “chemical imbalance” – only that my serotonin regulation mechanisms might have gotten messed up after being fed a steady diet of anti-this and anti-that during my developmental years.)

  • “Maybe if the scientists tell him its important to eat well, he just might believe it.”

    Well, if he doesn’t want to listen to the scientists or his mother, there are plenty of people with “lived experience” that would gladly tell him that lousy food/not enough good food can make a person feel hideous!

  • So glad to see this topic here!

    I finally figured out that if I don’t get enough B vitamins, my “mood” plummets. Very much like a little kid, if I eat too much sugar, I am prone to an unpleasant progression of loopy-cranky-tired.

    Oh, hey – speaking of kids, sugar, and behavior, are you going to write anything about Red #40, Blue #1, and Yellow #6? http://www.npr.org/2011/03/30/134962888/fda-probes-link-between-food-dyes-kids-behavior

    That was sort of a blip in the news a couple of years ago…seems important though. If the additives in food impact our neurological processing, seems like people would care about that.

    (Oh, who am I kidding?)

    Thanks again for being here. I’ve heard that the sometimes difficult states associated with diagnoses like “schizophrenia” and “bipolar disorder” can be “cured” with orthomolecular therapies. There are advertisements on the radio for a “clinically tested” nutritional supplement for mood stability and ease of anxiety and some outfit south of the border is marketing a proprietary blend of nutrients as an alternative to psychiatric meds. It seems to have gone way beyond St. John’s Wort and Omega-3s.

    For folks who are interested in this topic, Monica Cassani (www.beyondmeds.com) has posted some really interesting content re: food, nutrition, and wellness.

    Me? I am just glad I can eat gluten.

    Thanks again for addressing the nutrition aspect of the mind-body connection. I look forward to reading more of your posts.

  • The pop-up worked! Glad to support the site!

    Also, in brief response to Scott Miller’s suggestion that there is not a clear pragmatic (programmatic) effort to “stop the quacks” – I think it is a fair characterization to make that many of the individuals who post on these pages (both in blogs and comments) are spending huge portions of their professional and personal lives actively challenging the medical model and creating support for alternatives. To my knowledge, writing here on MIA is not all that these folks do…they go to meetings, they write letters, they talk to families and survivors, they respond to mistruths in media, they create their own media, they hold community groups, they organize conferences and conduct research, etc.

    It sounds like you are making a call for more cohesive and strategic organizing around these issues?
    That’s a pretty good call to make.

    Has anyone ever done a blogpost about how to get involved in change-making efforts re: psychiatric human rights? How to contribute to the movement or build awareness locally?

  • Rufus May – Thank you for posting this here! I fully intend to print out a copy and share it with some non-digital folks in the mountains of western North Carolina.

    I really appreciated your approach to Mindful Supporting. I also have an occassional inclination to “fix”/”resolve” emotional struggles or find myself resistant to being present (this is, for me, often due to fatigue). It’s refreshing to see your acknowledgement of the “fix it” impulse and the conflict it creates in ethos of empowerment and the practice of being unassuming and non-directive.

    Sometimes, it is hard to just be with someone in distress…but, it seems like when I back off from resisting the rawness or intensity of a person’s expressed state, and am able to just be there with them…well, not trying to ease distress seems to sometimes go a long way toward easing distress.

    …sort of the same dynamic that applies to hungry ghosts?

    I loved that part of this post. It reminded me of my friend Wildebeest, which was a feeling that I had for a while last summer. It was an unwieldy feeling, too big and untamed, too stampeding and snorting. It was inconvenient and distracting, having my heart being traipsed over like a veldt, hot wind blowing ’round my head.

    When ignoring the horns and hooves didn’t work, I tried visualizing Wildebeest walking away, alone across a dusty plain. It stayed close though, and so I tried picturing myself climbing upon the creature’s back, standing on it as if in some triumphant circus. Have you ever tried to stand atop a wildebeest? It is awkward at best, and the imagined fall was humiliating even though no one was watching.

    The feeling stayed, as stomping and disruptive as ever. I wished and wished and wished it would go away, fervently picturing how it might look getting smaller and smaller as it moved toward the horizon. Suddenly, when it was just a speck under a big blazing sky, I realized that I loved Wildebeest, that feeling I had named for an animal I’ve never seen…and I called it back and I ran toward it, wholeheartedly loving the feeling for every bit of wild and rangy struggle that it represented.

    Love and acceptance quieted down the Wildebeest almost immediately. It still makes occasional migrations and I welcome its coming and I welcome its going.

    Ha! I just realized the conundrum of how being present with the subjective internal can obscure mindfulness of the external, the feel of ankles crossed, the fact that it is raining and the window is open.

    I really loved this post. Thanks so much for creating this resource.

    Hey, Ron Unger, thanks for the links to more of Rufus’ work!

    How’d the seminars go, by the way?

    Much Appreciation,

    FR

  • Ha! I love that you sent this invitation to Mr. Pies. I hope he reads your post. I wonder if he even checks his own email, or if some TA or assistant screens it for him. At any rate, I hope someone from his associations reads your post.

    Psychiatry has a broad streak of self-serving ego, doesn’t it?

    In order for them to be “doctors,” they must create “patients.”

    Love this: “One is labeled with psychiatric diagnosis and the other is labeled with a medical degree and initials after their name.”

    Mr. Pies and his colleagues have constructed a system of stratification that serves their apparent need for a sense of authority.

    There are millions of people who are stronger and smarter than any psychiatrist ever gave them credit for…millions of people who, for years, have wanted to tell their psychiatrists that they don’t know what they are talking about.

    Thanks for speaking truth to (constructed) power. It’s tragic that the imagined power of psychiatrists has become a matter of law in so many places. As documented all over the internet and in innumerous records, when labelled people challenge the authority of psychiatrists, they are punished, forced into the role that psychiatry requires them to play…so that psychiatry can exist.

  • note re: “the movement (which began a long time ago)”

    …not that I know much of anything about the movement, other than it began long before I learned of it.

    In ways, the psychiatric human rights movement seems to me like an extension/branch of so many other movements toward liberation in the context of exploitative systemic oppression for the purposes of structuring power and profit to benefit a few at the expense of many.

    Hope you all have a great night!

  • I’m so glad you stayed alive! This is a beautiful post and I love the photography. I’m sorry to hear abour the loss of your son, larmac…and I agree that the movement (which began a long time ago) is approaching a pivotal point in growth and awareness.

    I keep waiting to wake up and have it be the day when some official somewhere makes some broad announcement of rampant corruption and abuses…and *tada* the medical model will be kerflooey! Of course, it won’t happen like that…but, it does seem as if just below the surface of public consciousness there is quite a bit moving in that direction.

    Thanks again for sharing your story and for posting awesome pictures!

  • “Perhaps the problem is that the idea of developing and then promoting a solely medicalized way of understanding our distress is creating the very ‘stigma’ it seeks to eliminate. For me, it conjures up images of a dog chasing its own tail.” SD

    “In other words, the belief that was assumed to decrease stigma actually increased it.” RF

    YES! Thanks for articulating this is such a readable and reasonable way. I really enjoy your posts here, because they do such a great job of drawing out the utterly absurd assumptions that the medical model and its reinforcing notions (such as “anti-stigma”)are based on in such a way that it is clear that not only are such ideas abusive, exploitative, and disrespectful…they are also just kind of “dopey” and illogical.

    “Anti-stigma” reminds me, ontologically, a lot of “tolerance” in that it implies that something is wrong that must be accepted or put up with. You can’t have an anti-stigma campaign without reinforcing the existence of a stigmatizing mark, just like you can’t have a tolerance campaign without supporting the belief that there is something to be tolerated.

    Thanks again for a great piece of reading!

  • Because I just wrote a comment about not evaluating anyone else’s experience or personhood, I feel a little weird about saying how much I admire your commitment to caring about what happens to the people you have met.

    I’ve “known” you for a little while now, Maxima, and I perceive in you a vigilance of heart that consistently astounds me and inspires me.

    I’m glad you’re out there.

  • Yeah, you’re totally right, Jonah and I appreciate you drawing my attention to that slip in mindfulness re: communication. It is a very human tendency to apply our own reactions and assume understandings of other people’s lives.

    I responded more hastily than I’d like to have, due to being in between errands, and from a somewhat emotional place…both factors that affect the integrity of communication. However, I can say that I was speaking from a place of good intention – though this thread has certainly illuminated the shortcomings of good intention. I could have said “that sounds, to me, like it is heavy” or “that would be heavy for me” rather than declaring someone else’s experiences to be “heavy.”

    It is not fair to think that, because I am a mom and because I have contended with my own sense of being under seige by dark forces, that I can possibly estimate anything of what is or is not heavy within someone else’s life. I do know that feeling that one’s circumstances constitute “a very lonely experience” can itself, for a lot of folks, be “heavy.” However, that is their determination to make.

    Don’t ever worry about offending me by pointing out inconsistencies or gaps in the quality of my participation in discussion, etc. I actually prefer people to let me know when they think I have crossed some nuanced line, because I am learning and un-learning. Feedback is helpful, because it is important to me to communicate with integrity and to not violate anyone’s right to make and express their own meaning of their life and experiences. It’s not for me to say anything is anything…which is a challenge at times, because of my background in analytical social sciences and opinionated culture. “That’s good, that’s bad…that’s heavy, that’s light.” It’s not for anyone to say what anything is other than ourselves and valuation of experience is at the root of pathologizing or diminishing particular modes of being human.

    So, thank you.

    This comment reminds me of what bothers me so much about Seth’s (hi, Seth – we don’t need to discuss this here, but I do think this is relevant to the topic and to this comment) vision for a messianic mad pride movement. The proposal makes a lot of determinations about what people ought to think about their experiences and what they ought to do with their lives, which is kind of the same mechanism used by prescriptive and prognostic psychiatry…”Your experiences mean this and you must be this as a result and you must do this as a result.”

    Of course, it is much different in content and there are other factors (the salvation of the planet and humanity, etc. and the tendency for shaman initiates who refuse their calling to reputedly become soul sick, and all sorts of other considerations) – but, messianic mad pride as framed by Seth (hi Seth, I am not being hyper-critical or dismissive of the value of your perspective or scholarship, just expressing some issues I have with the underlying assumption of the right to determine what someone else’s experiences must necessarily mean to them and what they ought to do in the course of their lives) is a little problematic.

    Anyway, I hope I didn’t cross lines too heavily with you, mizchulita…I think, if nothing else, I was just trying to say, “That sounds difficult. That sort of thing would be hard for me. Damn those dark forces. I wish they’d leave people alone.”

    Something I am, because of my job, in the habit of doing is saying, “in my experience, here are things I have found helpful” and I do tend to be a little pedantic, because I have been an educator and a mentor for a long time in a lot of different realms. It’s obnoxious and I try to keep it to a minimal outside of designated roles and contexts.

    So, again, thank you, Jonah…for helping me to be more aware of a couple of growth edges in my manner of relating to people and their experiences.

  • I have more to say on this, but want to respond quickly with just, wow…that is some heavy stuff you and your boys are dealing with. Dark forces are very real…and they do wreak havoc on the heart and mind. There are some folks scattered around the Icarus boards that deal with trying to cope with dark forces…but they are scattered around. http://www.theicarusproject.net

    For me, and thank goodness I don’t have visual or auditory sensory disturbances related to darkness – because that would be a lot to try to cope with, whenever I feel like dark forces are nipping around or mounting full siege, there are certain practices of visualization and re-orientation through response – meditating on protective energies, calling up light, disengaging in belief in the power of said dark forces, calling them out as “fuckery” and not feeding them with fear or investment. I haven’t had to deal with them recently, so I am probably making it sound easy…which it is not.

    Wouldn’t it be nice if the wide open hearts were open only to light…not so simple though…

    I wonder if, in the currents of consciousness and the universe, the word “Jesus” has become calibrated with a force of love. It does carry a lot of power, that word and what it means to us.

    Anyway, I hope that today is light for you and yours…and that the dark forces leave your boys alone. (I find myself hoping that with my whole heart, to the extent that I feel a little tearful. So know that I mean it. When I hope things, I picture them happening. Whenever I am scared or worried for my kids (for the usual reasons of mothers) I picture them surrounded by light, protected wherever they are. I don’t know if it does anything, but it makes me feel better.

    Sending love. Seriously.

  • “However I don’t think a spiritual organization or worldview is of any value
    if it not based on the awareness that currently the world politically is under the rule by a dangerous elite—the proverbial 1% —and metaphysically it is under of the reign of Ignorance. Or ignorance or evil etc….
    And solution is redemption.”

    YES! …and I do agree that human ignorance (systemically imposed and maintained by complacency, fear, and disconnection) is a huge barrier to redemption.

    Seth, I have meant to respond more to your posts here, but have been short on time. I deeply appreciate your scholarship and intelligence.

    Nice re: the Manning petition. I signed that, too. I haven’t seen the one for taking back the one they gave to Obama. Disgusting that he even got one.

    Anyway, thanks and – yes – I agree.

  • “…and would much prefer to imagine…”

    (got lost in the parentheses)

    I would much prefer to imagine that most people are essentially good.

    I think it alienates people from the movement and from the personal relevance of the cause when we compare run-of-the-mill psychiatrists and “mental health practitioners” with, for example, Nazis. I think that is, in ways, as unjust as thinking that anyone with a schizophrenia diagnosis is dangerous.

  • Hi, I just wanted to take a minute and share this simple quote (below) with folks on the thread. I have thought a lot about my reluctance to face the darker side (montrous) side of humanity. This is not, I have realized, out of an ignorance (I know, for example, that some people do hideous things like killing children and holding slaves)- but more out of an effort to side-step the mind-spinning angst that I feel when I think about the existence of such things and what such monstrosity says about the species that I am a part of. I have a significant history of misanthropy – of really being deeply disgusted with human beings in general. I have found that such framings of humanity tend to not function well in my mind and heart, they make me feel alienated and despairing and it is easy for monstrousness of a few to globalize into a skewed perception populated by far more monsters than actually exist. I know that there are horrible and deeply wretched people out there…and that monstrousness exists (like most things) on a spectrum, with very few people being what might best be termed evil. I just don’t like to think about this quality of humanity as being a particularly common quality and would much prefer to imagine (and that is really what any worldview is, because we do not and cannot know what is in the hearts of people who are distant strangers to us, but we can make guesses and hold hunches…though the ethics of such, thinking that one knows something of another person are a little tricky and their are dangers in any assumption, because what we see may not be real and, yet, what we perceive becomes real in our minds.)

    Anyway, for me, this little quote that opened today’s Beyond Meds post was perfect for this morning’s topic of contemplation:

    “There is no way to embrace the totality of life without accepting the ugliness that also exists…it’s a sort of paradoxical conundrum…and…Acceptance doesn’t mean acquiescence…”

    (The post was a great round up of responses to crisis fear and I am going to forward it to the person who fb’ed me and asked what to do about his roommate’s “mental health crisis.” By the way, there have been a couple of mentions of community support as an alternative to professional services like psychotherapy. The local collective here experienced a sort of renaissance about 6 months ago and is proving to be an anchor asset in people’s efforts to meet their needs for support, encouragement, and community. Sitting in a room with 10 other people who have – in their way – been there and talking about where “there” is in the landscape of their lives and all the places one might go from that place seems to be immensely helpful to people, healing what years of paid therapy with a stranger (even a kind one)simply cannot…the wounds inflicted in our sense of self and value, natural connection with other people. Plus, a few collective members are “trained peers” and a couple are even mental health professionals, so the skills and information that come with those practices (facilitation of safe spafe, specific mindfulness techiniques, WRAP facilitation, knowledge of resources and perspectives) are a part of it. Nobody participates as a professional, in a hierarchical way though and professional skills are nothing when compared with the act of just being human and honest. We all learn from eachother. It’s pretty awesome and I think every town should have mutual aid networks and community gatherings.

    By the way, I admire your spirituality, Maxima…and you’ve seen a lot of awfulness over the past couple of months, so your perspective is bound to hold those images…I hope you find a re-connect with the church that is helpful to you.

    http://beyondmeds.com/2013/04/03/acceptance-not-acquiescence/

    hope you all enjoy the day.

  • Thank you som much for so thoughtfully articulating all of that.

    This:

    “That does not negate this fact, that: *forcing* neurological ‘treatments’ on so-called “patients,” one is inevitably *violating* those “patient’s” human rights. (Most psychiatrists will claim otherwise; they say that their physician’s oath, to “Do no harm,” requires them force such ‘treatment’ on people; but, that is the parroting of their faith; it is an ideological belief – not a fact; it is a claim running contrary to many facts, regarding the nature of those drugs; and, their refusal to accept this (i.e., the psychiatrists’ persistent claims that they are not human rights violators) does *not* make them good and conscientious. They are mercenaries, committing human rights violations.

    From this point of view, I’ll not be convinced that *any* psychiatrist is doing good and conscientious work unless or until s/he fully and unequivocally, openly renounces the ‘power’ and ‘duty’ of *forcing* psychiatric ‘treatments’ on people.”

    I actually think that, at this point, knowing what is known and with the UN declaration that forced treatment and restraint are torture, that psychiatrists who violates human rights (which is any psychiatrist that engages in forceful or coercive treatment)should be held accountable.

    The apologist in my says that, of course, many psychiatrists don’t know that what they are doing is considered to be torture. Did the UN send a letter to every psychiatrist in the country? Probably not. Did every psychiatrist read the Harrow report? Probably not.

    Still, there is very little excuse for them not plainly seeing the obvious pain and trauma they cause to people, who cry and beg them to not do what they are doing. Children even. Thus, I think you are correct in your explanation that the training and culture of the field – which is largely shaped by pharma and institutions of normative social control – actually do damage people’s capacity to see humans clearly and to discern the effects of their actions. Deluded is an apt term and I’m glad you used it.

    You know that policeman that I mentioned up yonder? Well, that was when I realized that these systems of power, profit, and control hurt even those who participated in them and perpetuate them.

    I can’t say that most psychiatrists don’t know that forced treatment and pharmaceutical toxicity is harmful…it is so obviously harmful. I think a lot of psychiatrists confuse iatrogenic illness and distress as being the “effects of the illness.” Oh, that makes me so angry…but, I won’t write in all caps and I won’t go on and on about it. It’s all been said…and we say it again and again…

    So, yes, I agree that monstrous acts should not be excused on the basis of one’s potential to act in non-monstrous ways, nor on the basis of delusions of “thinking it was the right thing to do.”

    There is no excuse – ever – to treat people as inhumanely as psychiatry does and the APA and it’s associates should be held collectively accountable and collectively responsible.

    It is getting to the point where any psychiatrist who claims naivete in perpetuating harm is only lying to themselves…and their “patients”…and their patients families.

    I really have a lot of confidence that the people are – in a big, sweeping, tipping point sort of wave – going to figure it out…

    Of course, if the doctors are delusional with power and reward and the people are all drugged and frightened…well, those factors somewhat impedes realization of a paradigm shift.

    I am no expert in anything, but even a highschool dropout such as myself can see, both anecdotally and in the formal literature, that it’s pretty obvious that neuroleptics cause bodily harm, cognitive decline, and potential epigenetic effects. In most of the studies, due to samples comprised largely of individuals on neuroleptics, you could just take out the word “schizophrenia” and put in the words “the effects of neuroleptics” – as I suspect that, in a lot of these qualitative inventories, that is what they are actually seeing…drug effects.

    How can such educated people be soooooooo foolish?

    You’re right, they are totally deluded.

  • This is such an amazing list, Maxima! I am going to copy/paste it and post it to my wall. I totally agree with you and georgep re: the use of the word “recovery.” It has been largely co-opted and could imply some return to some supposed “functional” state or an absence of “symptoms” or something. I always encourage people to define the word for themselves, and consider whatever I might call my “recovery” to be a recovery of myself. I have, at times, used the word reclamation. I have never defined “recovery” as being “without symptoms” or “normal” – because elements of experience that are seen as “symptoms” are vital parts of who I am and “normal” is a very unhealthy state for me to try to attain. There is some value in “recovery”, because in “recovery” – people have the chance to identify what they are “recovering from” and what they are “recovering.”

    I use it here for the same reason that “mental illness” isn’t in quotations in the title…because, at this point, there are still a lot of people who identify with the term. Moreover, there are a lot of people who still don’t even think “recovery” is possible and so the term, in some ways, does have dialogic utility.

    I am less interested in writing for the benefit of people who already understand why recovery might be a troublesome word and more inclined to try to communicate something to people who haven’t had the opportunity to explore new ways of thinking about the words they use when they describe themselves and their lives.

    Thanks again for this amazing list of synonyms. I really am going to make a list of it. It’d be kind of a cool and artful blogpost, “other words for recovery.” We need some new words for psychosis, too. I use the term reckoning a lot, as it has several different meanings…to face something, to find direction, to navigate as in sailing on some open waters.

    I hope you have a good night. I have really appreciated your thoughts here.

    (…but, I still don’t like to think of anyone as “monstrous.” People can behave monstrously, they can think monstrously, they can even feel monstrously and do horrifc and abhorrent things that are, objectively, monstrous. Does that make them monstrous? I really just can’t believe that it does…at least not all the way, forever, maybe people turn into monsters…but, people are transformative beings. We can change. We do change.)

    Note: one of my favorite synonyms from the list is uncovering. the way georgep wrote “re-cover” made me picture a figure piled with blankets, a mirror draped, something “unpleasant” hidden. I like the word uncovery. 🙂

  • Thanks for your generous comment. I mean generous not in the sense of being lengthy or in the sense of being kind…but in the sense that they offered some of your truths.

    I have wanted to respond to earlier (to other generous comments) for most of the day – but, have made an effort to stay engaged in the 3D/non-digital world. It’s sunny here and warm and I’ve been helping children with school projects, throwing the ball for the ageing dog.

    I have been thinking though, about what it is that does not sit well with me about notion of messianic movements, which I really know very little about…and I think it is this:

    When I was in the midst of my reckoning (my “psychosis,” my transformation, my shift of consciousness, etc. etc.) it struck me – all of the sudden – that we all have the capacity to feel the world deeply in ways that have been come to be called God. It made so much sense to me to think that, while the Jesus story was unfolding, that all over the world there were others who embodied God (which I consider to be forces of the sort that Sri Aurobindo described, because that appeals to my somewhat mechanistic how-does-it-work way of thinking.)

    It made such sense to me that it was all the same thing, working through people in different ways, being told differently. It struck me that such a connective consciousness was a possibly a vital component of our species, which is – after all – a part of the world and which is connected to everything that lives. I have talked with quite a few post-“psychotics” who report coming to very similar conclusions, as if some forms of “psychosis” are just processes by which we come to a gestalt awareness, a new and benevolent metanarrative (to borrow a term Seth had used).

    I think that the sort of spiritual hierarchy that is implied by words like messianic distorts the fact that all humans may well have the capacity to connect with the universe in immanent ways…and that with such connection, people inevitably experience an awareness of self and world that has the potential to redefine what is of value to them in this life.

    I have – since I was a child – been aware of the harm done by corporations and systems of power and exploitation. I found old “No Nukes!” leaflets in my parents old piles of books and worried about the pictures at night. I grew up on the coast, 3 miles from a nuclear submarine base and I read Edward Abbey and Ginsberg at age 13.

    A belief that I carried around for a long time (since I was a teenager, which is when the belief occurred to me) was that if you see a way that you could help and you do nothing, that is…well, not so good. I had never been a church-goer, except for when I was forced to go due to a school placement or something, but that idea of seeing a way to help and turning from it…that, in my mind, was like “sin.” So, I have most always kept up a volunteer position or two, and have tried to work in positions that support self-determined liberation, the potential for new perspective and inspiration…mostly service and education.

    Suffice it to say, I have not had the luxury of not worrying about the world since I was a very young child.

    As I was sitting on my porch and feeling the most eternal sense bloom in my bones, my thoughts booming with a strange new conviction and seeing the work of God in the form of forces everywhere, in trees, in songs, in clouds, in strangers…what really did it for me was the thought that I was nothing special, that anyone could – in their own way – experience what I was experiencing and that many people had.

    The amount of outrage I felt when I thought of everything that had been done by humans, everything that had been created for the purpose of destruction and distortion was like nothing I’d ever experienced…the outrage that I felt when I felt God was the outrage of the oceans and the outrage of the animals and all the people who had hurt by lies, denied their rights and their humanity…then I realized that people only get angry about things they care about…and the outrage shifted into love for the world, and grief.

    I did slip into a reality that was distinctly at odds with what was real. I became convinced that somehow, in the grief of late-Spring and the isolation of Summer, I had accidentally stumbled into communication with God (by any name) or that, maybe, God (as the same forces that run with the tides of the river I grew up on) had known me when I was very young, had been with me all along as thin thread tied round my finger, some current in my marrow…but, that I had lost sight, or I had been adrift…maybe it wasn’t God? Maybe it was ghosts? Maybe it had something to do with my dna? I just knew that, whatever it was, it seemed to be very real.

    It occurred to me, as I every little bit and piece of information and memory I had collided and coalesced into a sudden simple understanding, reinforced in the lyrics of songs and off-hand comments and whatever images I drew most freely, that maybe I had been meant for something…and that God had found me again and that it was up to me, a recently divorced, heavily tattooed and deeply confused mother of two with a lousy mental health history who made bad decisions and couldn’t hold a full-time job for more than a year and who had hardly ever finished anything…ha!…that I somehow was intended to “prove God” for the purpose of making the world stop just long enough for people to realize what we will lose if we continue. It made me laugh out loud, the thought of it.

    (…and you likely read in these words, in the cathexis of syntax, that those months and months of believing this are still very close to me. It really wasn’t that long ago. I have, for a long time, been able to hold it at arm’s length…study it objectively, a participant observer in the follied phenomenology of my own story.)

    Part of what I realized, by thinking through things logically -(I am actually a very logical person)- was that we are still evolving…and that it is entirely possible that our birthright – our ability to be deeply connected to the world was at stake of being significantly compromised in such a way that we may lose what is most human in us…and I thought about how we, as a species, destroy one another and how we destroy this planet…and I felt it all at once.

    Is it any wonder people lose their minds?

    So, that time is still very close to me…because still nobody has proved me wrong re: my thinking about forces and patterns and nature and consciousness and language…and it still makes sense to me in a way that is very strong.

    I realize that when I used to hear the word “messianic” I tended to think of individuals, but I am beginning to understand that it is more as a particular quality in of collective consciousness and species identity and orientation, just an element of humanity.

    …maybe, instead of us all being at the brink of an extinction of spirit, we are at the edge of a great leap in understanding…all in our own ways…of what it is to be human.

    So, Seth, when I think I about what President Obama is doing, I picture him awake at night, thinking about where he grew up and what the world was like when he was young and talking to people on the street. I picture him realizing with no small horror what he is allowing to happen. I picture him changing his mind, having a talk with someone.

    Of course, the human mind can be tricky in its attachment to assumed realities, and we can be molded and influenced all sorts of ways. Look at stories like Jonah’s and my own, the people who loved us were easily swayed to see us as sick, we even saw ourselves as sick.

    It really is no wonder that such terrible decisions are made, we are so easily manipulated…by fear and the illusion of necessity.

    I’m just sort of rambling on now. I do that at times. Most people who know me and love me understand that it is part of how I learn and how I seek resolution, by sorting my thoughts out through words, through narrative. It is also, however, a spiritual practice – this rambling on – as it affords me the opportunity to re-orient myself to what I know of the world, which may or may not be accurate…but, is what I believe at this particular moment in time.

    Beliefs change. They evolve just like we do, and we – in some ways – probably evolve with them. How do harmful beliefs affect our consciousness? What barriers are built by fear?

    A phrase that got me through the darkest days of my recovery (in the true sense of having to recover from something and to recover something) from my last unfortunate encounter with forced psychiatry was this: “You have to make a conscious choice between hope and fear.”

    That kept me moving forward. However, the thought that maybe there was the off-chance that I did have some purpose beyond my evident responsibilities also motivated me to heal and to learn and to grow. I don’t know what my purpose is, so I just do my best and try to be brave.

    I think that a lot of people tend to think about revolutions in fairly narrow ways. That there are some leaders and some crowds and its the peasants against the lords, the exploited against the exploiter. To think that one cannot be revolutionary in much smaller and more quiet ways and that even the seemingly most withdrawn lives have the potential to have broad and lasting impact…sometimes all it takes is a conversation…is to be rather narrow-band in one’s thinking about how the world might change. Sometimes, just staying hopeful is a revolutionary act.

    I have been in the streets with 10s of 1000s of people, and you know what? It didn’t stop the war. It didn’t even slow it down. I have signed plenty of petitions and have held plenty of signs. I don’t know how much good that did.

    There are many ways to approach engagement in efforts to promote positive and sustainable change in the world. I try to remember that, regardless of what I do, the world is changing and people are changing.

    I am always a little unpopular in certain circles when I say that I think that most psychiatrists have the capacity to be good and conscientious people. People think that I am naïve. I’m okay with that. To me, it makes very little sense to think that any entire group of people is evil or damaged to the core. It seems to me that, in ways, that sort of view is the very same that has been applied to us: irrevocably flawed and hopeless. That’s a lousy way to see people.

    I really have to believe that everyone has the potential to suddenly see, and to feel deeply the error of their ways and what their actions do to their hearts. When a policeman killed a protestor’s dog in NYC a couple of years ago and people were calling for his head on platter…all I could think about was how he had probably really liked dogs when he was a kid, because most kids do…just like most kids want to save the world at some point or another…or want to stand up for someone…or to be, quite simply, “the good guy.”

    Something very bad happens to people as they grow up…but, I really don’t think that any badness in the world is written in stone. It can be transformed.

    Well, this got way too long, and I didn’t even have a chance to specifically thank Donna for pointing out the error we are prone to make in broadbrushing and making rash claims about entire groups of people, many of which probably – like us – really just want the world to be okay and to do the right thing…it’s just that sometimes people get confused as to what exactly that means, usually out of fear.

    There is more to respond to…but, it’s late and I have to wake up and make oatmeal, go to work with my feet on the ground.

    Thanks for writing and reading and being out there, all learning and journeying.

  • Thanks for posting all of this and for “translating” and summarizing all this research. You have offered a great resource for people in practice and those who occasionally need to reference the formal literature in their efforts to encourage conscientious care. I’m glad that people in the field are beginning to realize that the standard treatment protocols may actually be quite harmful.

    I am going to bookmark this! Thank you!

    (It really is a big experiment, isn’t it? The research certainly indicates that.)

  • Hi Seth – I just want to take a minute to clarify a couple of things.

    I don’t live in an impoverished rural area. I live a 1/2 mile from the downtown of a small liberal southern city. I work two counties away, in a semi-rural area, in a setting that serves many people who live outside of town, in impoverished rural areas.

    I am not going to bother going into detail with a critique of your vision for a messianic movement of mad people…as I have voiced my concerns re: the viability and efficacy of that suggestion elsewhere. The core of it is a beautiful vision, but operationally is fraught with complications.

    I don’t disagree with your use of the term “post-psychotic” – I only suggested that I am rethinking my own use of that term, as I wonder about the use of the term “psychosis” in general.

    Thanks and hope your day is good.

  • Yeah, I wish I could go! Thanks for sharing some info. on the offering. I hope the seminar goes fabulously and is well-attended by the folks who may most need to hear the perspectives you’ll be presenting.

    Thanks for being out there, fighting the good fight with kindness and compassion. It’s heartening to know that so many folks are, in different ways, working towards a potential tipping point in practice and ideas: blog posts here, seminars there, a class, a letter and a few conversations, some scattered *a-ha* moments…it all adds up.

    If you or Michael get a chance, I’d love to hear how the seminar goes. Please keep us posted and thanks again!

  • Thank you SO MUCH for sharing a little about your son’s story. He is blessed (in every since of the term) that he has you for a mother and that you are willing to see something other than sickness in his experience.

    It is good that he has someone to talk with…and there are many more people out there. It can be hard, at that age, to have experiences that seem to set one apart. He is not alone. The percentage of people who have experiences such as his may seem small…but, it adds up to thousands and thousands and thousands.

    I often wonder about the distinct possibility that some people are sensitive to whatever forces give us a sense of “God” – by any name. It seems some folks are prone to pick up on language, stories and themes, they resonate with us and we see some sense in them, feel it in ways that are deeply personal and very real. To me, it makes sense that our species would include individuals who are sensitive to the numinous workings of the world. In other cultures, and even in this one – to some extent, it is recognized that some people are prone to deep spirit. Here, however, there is very little context for such things outside of traditions re: child preachers in southern revivalist churches, young ‘uns who “have the spirit” per, etc. – and they are expected to experience and express spirituality in certain ways that align with the religious cultures of their families and community.

    I consider it to be one of the great tragedies of modern societies that out-of-bounds experiences of spirit often have no home, they are not honored nor legitimated…instead, they are pathologized, dismissed, and (often through “treatment”) disabled.

    It is one of my hopes that young people who feel the world deeply will have the chance to understand what it is that they go through, and why, and that they will have the opportunity to learn what they need to learn of themselves in order to make good use of the power within their hearts.

    I suppose that is point for any of us…to have the chance to learn who we are, to explore what we think and feel, and to make sense of our lives and experiences in a way that works for us and supports us being in the world as our strongest and most true selves.

    Stay brave and keep trusting your heart!

  • Good ol’ Ginsberg…

    Thanks, Seth. Yeah…I get it. However, I have found getting myself into an apoplectic frenzy over the state of the world tends to undermine my energy toward working on solutions and, further, causes me to communicate my ideas in ways that are inaccessible to people who are not yet attuned to the reality of the world and to their innate human responsibility to try to participate in the world in ways that support creation and human potential.

    The “create your own reality” folks say that what we envision in the world becomes real…so, I try to picture everything working out alright and to put my energy, where I am able, toward ends that support what I want to happen, rather than focusing my energy on what I dread.

    As an aside, a bunch of “post-psychotics” (a term I am rethinking, for many reasons) are having a multimedia art show on “Mental Health, Sanity, and Liberation” on the 5th…which is the anniversary of Ginsberg’s death. Should be a good night.

    Enjoy the day…

  • Thanks, Richard – The journey continues! I have really enjoyed thinking about what atheism means to people. It seems that, like any of the other words we use to describe our understanding of spirit and self/world/universe relations, it can vary greatly in subjective meaning…from not believing in religion, to not believing that we are anything beyond our bones and blood, that there is nothing mysterious in the world.

    I appreciate that you seem to identify that it is thoroughly possible, within an atheistic perspective, to still have a meaningful and personal relationship with “the true wonders and mysteries of the universe.”

    When I use the word “God,” I am not referring to the God of any particular set of beliefs…but, as I understand it, the workings between our hearts, the instinct and myths that we carry as part of our species, and the stardust that links us to what might be the most simple truths about what is good in the world and within us.

    For me, it is important that people find their own ways to make sense of what helps them to feel hopeful and to believe in the good of possibility, what brings love into their hearts…whether that is metaphysic mysticism, traditional practices of faith, or – in my own practice – the patterns of creation and destruction in nature, an appreciation for our capacity to heal and find beauty, to feel deeply our small place in the world and to find value and purpose in our lives, and to recognize value and potential in others.

    “to recognize the value and potential in others.” <- this is another point of conflict that I see in psychiatry's approach to the human condition. In my view, people who – through their sets of beliefs – cannot see or appreciate the beauty of story, process, and experience may be compromising their own spiritual integrity.

    Enjoy the day!

  • “no psychiatrist asked about my thoughts”

    Psychiatrists have missed out on a lot of really amazing stories, wisdom, and insight, haven’t they?

    Thanks so much for your support of/interest in this post, Chrys.

    It seems like there is a lot of work being done on the crossroads of madness and spirit, with CEU workshops being held in California, books about madness and spiritual gifts…etc. etc.

    …thank goodness.

    Happy Easter and enjoy the day!

  • Thanks, Steve – I appreciate your appreciation! Lukoff’s work, among others, speaks volumes about how vitally transformative experiences that are deemed “psychotic” can be if they are seen from a more compassionate perspective.

    Biopsychiatric explanations of spiritual psychosis really strip down the whole experienc. That’s a shame, because humanistic views of madness are soooooo much more interesting and hopeful than anything psychiatry may have to say on the subject.

    Enjoy the weekend and Spring renewal!

  • Thanks for your acknowledgment, Maxima, of how hurtful it can be to seek help and to find locked doors or cruel dismissal. It stung the first couple of times, but then I started thinking about why people wouldn’t speak with me and about what the implications were…and the irony was fascinating to me.

    By the time I called the Billy Graham hotline, I was actively experimenting: “What would they say if someone from nowhere claimed to have a message from God?”

    🙂

    I am actually glad that nobody listened, that nobody explained…because being a voice in the wilderness was a very important thing for me to have gone through.

  • Thanks, Jonah – for your insight. I really appreciate the directness and even-handedness of your communications…and have, at certain points, been envious of your way with words, too. You seem to have a lot of consistency in your integrity and that is very admirable.

    I hear what you’re saying regarding the need for quotations around “mental illness” – and I often use those wry little slashes to signify that the idea put forth by the words is just a saying that says nothing of value.

    Sometimes though, I wonder if framing the phrase in such a way dissuades the attention of people who, unlike you and I and most of the people
    , still believe that mental illness is a real thing or an apt description of what goes on with people who are having a time that is hard to understand. Not that I am pandering to their misguided and ill-informed (pun intended) ideas, but I am interested in somehow bridging dialogue, especially in regard to individuals who may think – because of what they’ve been told and what they’ve read and what they’ve heard – that they have a “mental illness.” So, maybe if – theoretically – they saw the title on twitter and it had quotations around the words that they use to describe themselves, they might see it as not taking their current reality seriously or something like that. I try, in most anything I write, to communicate that very important message you brought to this comment thread: YOU ARE NOT SICK.

    I have the same conviction that you have, that nothing has a right to stand between me and my version of spirituality, the way I feel the world and make sense of it. In my mind, our right to spirit is a very basic human right…and you’re absolutely correct the ideas spawned by institutions of profit and power (be they churches or the APA) have long undermined, manipulated, and distorted that right. I think, sometimes, that people who experience intense spirituality outside of the boundaries established by churches are seen as a threat…and so, in reality, all that ranting and raving about persecution is quite apt…as out-of-bounds experience of spirit are persecuted.

  • Addendum, re: this statement:

    “I think one of the most important things that I have realized over the past couple of years is that people do not end up flagrantly psychotic and hopping into strangers cars to prove something to God, or jumping off of buildings, or standing on the street corner hollering at people to listen…if they are listened to when their questions arise and if they are responded to kindly, with understanding and acceptance.”

    Actually, people experience madness in all sorts of ways, with all sorts of trajectories and manifestations…and, depending on a lot of different variables, people could be faced with some pretty heavy madness “out of nowhere” – so, I retract the above statement, as it is too generalist. I do think that, regardless of how it manifests, madness needs to be responded to with kindness and, as Mike Cornwall phrases it, “loving receptivity.”

    Also, I think that madness is a necessary process for some folks, something they must go through as part of their development, their healing, their resolution, etc.

    …and sometimes “madness” isn’t mad at all.

  • Thanks, Maxima, for sharing so much of your story. I am looking forward to hearing more about how the trip to Geneva went re: human rights, torture, and forced psychiatric treatment.

    I think you’re correct that there are some, er, issues between the primacy of psychiatric determination and the power of whatever people may think of as being God. Historically, the roots of psychiatry are thoroughly tangled up with suspicions about spirit possessions and dark humors, etc. The origins of our modern mental health system are also based in a tradition of religious intervention and a lot of the early institutions were run by people of faith, with the thought that rest, prayer, etc. could cure folks of “madness,” or at least quell what was seen as a condition.

    So, the relationship between God and mental health goes way back.

    In a lot of ways, this topic – spirituality and recovery, faith and mental illness – is one that has the potential to call into question the role of assumptions about what is and is not “healthy” spirituality, as well as what is and is not “God” – possibly leading to a better understanding of the way that the rubrics of religion and psychiatry have impacted our view of how people experience spirit and what that means in our modern social and cultural contexts.

    One thing that madness certainly does is break the rules and test the boundaries. Our Western traditions of catechism and compliance are punishing of those who break the rules (see Bruce Levine’s essays on anti-authoritarianism and schizophrenia https://www.madinamerica.com/author/blevine/) and the reactions to expressions of questioning and/or defiance are not responded to with kindness, tolerance, or sensitivity to the fact that, as humans, tend to question what we have difficulty believing and that, psychologically, we experience distress when we encounter value conflicts and things we don’t understand.

    Dr. Kehoe did bring up a very interesting point, which is reflected in the Sinnott research/theory cited above, that the way we conceive of God – our thinking about what God is and the power dynamics that we define those relationships by (e.g. God is kind, loving and forgiving, God is something to fear, God is punishing, you have to prove yourself to God, etc.) – are based in our early exposure to ideas about God and to our (this gets a little Freudian) relationships with people in our lives that share the attributes we assign to God. The punishing father, the punishing God, etc. etc.

    I think one of the most important things that I have realized over the past couple of years is that people do not end up flagrantly psychotic and hopping into strangers cars to prove something to God, or jumping off of buildings, or standing on the street corner hollering at people to listen…if they are listened to when their questions arise and if they are responded to kindly, with understanding and acceptance.

    For me, it took months of criticism, dismissal and cruelty in response to my questioning for me to end up alone on my porch, believing I was both forsaken and chosen.

    It is not as if I didn’t reach out. I did. I called churches, I sent messages (which as time went on became increasingly strange) and nobody would listen, nobody would help. The Catholics said I could sign up for a class to learn how to be a Catholic, the synagogue said, “Well, that’s all very interesting.” The Baptists told me I was wasting the ministry’s time. My family would not even look at me. It was as if I weren’t allowed to wonder why I felt God in the world in ways I hadn’t before, like I couldn’t do that, like it wasn’t for me to have anything like a spiritual experience. It made them “uncomfortable.”

    I think it is pretty common for people to end up psychotic when they need help and they need support and, in their seeking to meet their needs, they are treated cruelly. That, in and of itself, presents a huge challenge to spirituality and, for me, was pretty wounding to my faith in humanity, which certainly contributed to an escalated madness, putting me at odds with my own humanity.

    There are some big links between trauma, psychosocial stressors, fear and the manifestation of messy, confused and unbridled madness. If there were safe places for people to ask questions, to sort through their thinking, to suss out their feelings and what they might mean, I doubt that the ER would see quite so many folks ranting and raving in split infinitives about persecution.

    I need to do some research and find out more about peer support practices that are specific to psychosis and spirituality…because it is important.

    Hope you enjoy the day…and thanks again.

  • Thanks, Chrys! Hopefully, within the next couple of years, we’ll see a lot more awareness that so much of human distress is rooted in what might best be considered to be crises of spirit, self, hope and meaning.

    The conflict between a belief in hope, healing, and the ability to be transformed and the ideas put forth by the medical model is very problematic…and there is a lot of potential there for dialogue and new perspectives.

  • With the expansion in use of neuroleptics among people reporting or being diagnosed with depression…and bipolar…and ADHD…autism…and, of course, schizophrenia…it is hardly a wonder that Smoller, etc. identified what they claim to be similar epigenetic traits among individuals with these diagnoses.

    Neuroleptics will damage the brain regardless of what diagnosis a person has.

    Awful about the ads on the electronic check in device…and that doctors don’t seem to know better.

  • Thank you for sharing a few of the letters that were not published by the NYT. I was pleased to see that the Laura and Sera were not alone in their perspectives, that the Times opted to publish a few other letters that questioned the integrity and humanity of labeling.

    It is my hope that intelligence and compassion will prevail.

  • Kermit, re:

    This might be interesting to some:
    http://www.nybooks.com/articles/archives/2013/apr/04/religion-without-god/?utm_medium=email&utm_campaign=March+19+2013&utm_content=March+19+2013+CID_0e5e24b842189fa687ab52d69042ce67&utm_source=Email%20marketing%20software&utm_term=Religion%20Without%20God

    Yes! Very interesting!

    This is a great essay, by the way, and I appreciate these articulations of the double-binding dynamics of expectation, limitation, and punishment. Isn’t it ironic that a country which was founded as a result of a war with the word “Revolutionary” in its name does not allow defiance and that, in the midst of all this talk of freedom, we find ourselves so constrained.

    Correct me if I am wrong, but didn’t Jung theorize that disparity between what one is told is real and what one observes to be real, coupled with damned if you do/damned if you don’t scenarios, tends to catalyze manifestations of madness?

    If people are spiritual, or religious as defined in the Dworkin excerpt, then they may have a deep sense of ethical responsibility and a reverence for nature…yet, we live in a culture in which even the sacred is pathologized (punished and illegitimated) if it falls outside of approved venues or modes of expression or if its potential outcomes may defy the interests of authorities…whether those authorities are corporations, government, church or family.

    It is so encouraging to see these ideas in so many different forums, gives me hope for the great turning.

  • AMAZING!

    Keep going!

    I needed to read this today.

    “How do you live at the intersection of love and outrage?” This is what Pat Deegan said at Alternatives that all peer specialists do. She showed a clip from a movie of old mental hospitals where the attendant keeps ignoring someone in distress and finally another patient helps the guy to sit down and chill out. How does love and outrage fit together in your heart? How do you balance them to be productive? Or how can I, anyway?

    And how do you know what the Creator wants you do? If you think this is important, how do you figure it out?”

    Thank you!

  • “I blame psychiatry for this cultural degeneracy.”

    There are actually some pretty good songs cropping up around radio. Even Katy Perry has gone from being a Teenage Dream to being Wide Awake.

    …meh. Yeah, you’re right. A lot of it is just plastic and anesthetizing.

    The human preoccupation with romantic love is a danger to society…because so many people seem to think that if we get a honey and little cozy house to hug in that we don’t need to do anything else in life.

    that sort of snuggle up and drop out love breeds complacency, in my mind. happy valentines day. 😀

  • “There’s this dream in my brain that just won’t go away…”

    Pandora just streamed this pretty ragged and beautiful old Bright Eyes song as I was thinking about how much those lyrics up there that you left and that you named your kid after a rocker just really makes me…not exactly happy, but…

    “something vague that we’re not seeing, something more like a feeling…”

    I appreciate you, mjk.

    Tonight, a friend of mine said to me, “I just really don’t know what you’re saying.”

    I said, sarcastically, “Oh, sh*t. That’s a symptom of schizophrenia, if your friends don’t understand what you’re saying. ah well..”

    We laughed, though it’s not funny at all.

    Such rubbish. A person’s lack of understanding really says very little about the integrity of my communication.

    So much of what is pathologized is just communication.

  • Sorry, there are some 1/2 finished thoughts up there…some confusing sentences as I was trying to figure out how to say what I wanted to say…

    …which is mostly just thanks…

    I learn/grow a lot through spending time ’round here, sharing thoughts and then re-thinking them.

    Sometimes, most days actually, I am very aware that outthereoutthereoutthere are thousands of people who are…well, probably people I’d get along well with, probably people who are amazing…and they are being psychiatrized into oblivion.

    That makes me sad, because it’s like knowing that I have a lot of potential friends who are getting hurt…beautiful hearts and fine minds, dying.

    That’s who I wrote this for.

    Mad Love.

  • Oh, I so appreciate you folks.

    You know, all day, I have been nagged…because while it is wonderfulwonderful to post words to a community and have them read and understood and appreciated…I didn’t, in all honesty, write this for the Mad In America community…but for the people who are still in the process of surviving…and for those who really, truly *get* what I mean about music and the radio. So, I’m glad a few people found it.

    I think I want more friends/community who navigate the objective/subjective/possible in ways that make all sorts of far-fetched stories bloom real and reasonable in mind.

    I had a great little talk today with someone who, in response to me saying, “You know, this whole ‘recovery’ business is not about me not having this stuff going on, but about me relating to it differently…” I didn’t even finish my thought, because the person cut in and said, “It’s not ‘stuff’ – it’s just life, it’s how I experience the world. I pick up information from a lot of different sources.”

    That was really affirming to hear and it reminded me of what a shame it is that we (just as people in general) tend to shine-down the aspects of experience – no matter how awesome or how sacred or how special it may be to us – that are “weird” or “crazy” in order to fit in or make sense to people who orient themselves to the world in ways that are more typical.

    (Though, really, there is no “typical.”)

    This is where I think “recovery” is just as dangerous as “mental illness” – because it can draw so many lines that sever the wholeness of our experience, casting some elements of our mode of being as good, while others are bad, symptomatic, “stuff”…

    That is such a diminishing tendency, an insult to mad brilliance and a lot of strange beauty and story.

    Thank you, Emily and mjk, for posting songs…that is so super rad of you.

  • This is such an amazing and important post! I really hope that this is shared far and wide.

    It’s amazing the extent to which pharmaceutical “technologies” have been to used to completely manipulate our modern human experience, changing the ways that we view ourselves and our bodies.

    In a way, at the risk of sounding expansive, it’s a little like a war against nature.

    Thanks so much for writing on this.

  • THIS IS WHY I WANTED TO WRITE ABOUT MUSIC AND MADNESS!

    Sorry for the all caps…it just makes me really happy to have read those lyrics that mjk posted and music is just such a wonderfully human thing to think about.

    (I so needed to read those words today, mjk!)

    I am going to share this post after a couple of typos get corrected. Does it matter if there are typos?

    I really want to know the songs that people think about when they think about madness – whatever that means for them. It’s so amazing to me that some people will go to the general, a la Ozzy and the band Madness, and that some will think of these really beautiful, out of nowhere, specific little bits of lyric.

    This came up on facebook re: madness and music and I just love how it is such a sweet comfort song, not Crazy Train at all:

    The Blow, Parentheses (thanks, you-know-who-you-are!)

    http://www.youtube.com/watch?v=Xt8jq_YSyxk

    “If something in the deli aisle makes you cry, You know I’ll put my arm around you And I’ll walk you outside, Through the sliding doors, Why would I mind?”

    “All of the babies, they can feel the world. That’s why they cry.”

    (That definitely has something to do with the etiology of madness.)

    To think about all the human story that these little scraps of music and association hold blows my mind in the best sort of way.

    Thanks for reading and, mjk, for posting words and songs.

    Hope you both have a good day!

  • …And I’m sorry if I was presumptuous in calling you my friend and comrade. In many ways it is true though and that is not sucking up, that is remembering two survivors on a bus together and knowing with no uncertainty that you understood certain truths about my life that really only a kid who has been sent away and locked up, and held down can know.

    I’m angry. The world is upsetting. It’s a beautiful day.

    You know that I work as a wrinkle in the system (love that phrase) but that is just a part of how I am trying to learn how to do my bigger work…which is liberation of the heart…when my own heart is not even liberated..because most days lately I can barely stand to think about where we are in history and how little people seem to care. It just shuts me down ’cause the feeling is just so big. Like watching a trainwreck and the train is carrying everything you ever loved or hoped for in the world.

    Man, this essay really broke my heart, Ted.

    Thanks, I guess…

  • Ted, my friend and comrade, this made me realize something with a clarity that I don’t think I had before and that is that if the “mental health system” did not exist at all there would be no struggle in the way that there is now for some people. They would not be in distress at all. That’s not true, there would be worry, there would be grief, there would be anger and confusion – because these things are part of life IF YOU LIVE IN A TOXIC POLICE STATE OF MASS ATROCITIES. They would not be deluded, however, in the way that they are today…by the belief that their sadness, their fear, their utter dismay was just a problem with them…their brains or some such shit as that…and they’d know that something was very very wrong in the world, because they’d no longer be able to blame themselves as they have since been taught to do. They would have to see that something (so many things!) vital was missing from their lives or that they’d been hurt in ways no person should ever be hurt by another human being. EVER.

    (I’m sorry, Ted. Your writing always makes me feel a little too much…it’s true. Sometimes the feeling is just too big.)

    Regaining composure, as I sit calmly and quietly on the porch, it makes sense to me. If the “mental health” system did not exist at all…

    People would know what was hurting them* and they would see that it was…the military industrial corporatocratic prison complex and the tyranny of fundamentalism’s existence?
    (That’s not as complicated and absurd as it sounds. It’s pretty simple, actually.)
    (Oh, it’s just too big.)

    *adjunct forces of human oppression and delusion: media, snacks, booze, sex, pain, sports, clothing and hobbies of self-loathing and criticism

    So, “the mental health system” is really not the only thing that oppresses, as people who care about the world. We are oppressed in our capacity to even know the truth and crippled in our ability what any truly sane human being would do which is to…grieve…and rise up.

    (“Schizophrenia” and anti-authoritarianism.)

    (“Schizophrenia” and consciousness.)

    (“Schizophrenia” and revolution.)

    (“Schizophrenia” and god.)

    (Fuck their history.)

    You can call that a poem.

    Thank you, Ted, for helping me to really feel the truth of the matter.

    So, what should we do?

  • aps.0721 – good for you for finding a different school. I wish that all people had access to better education alternatives. I had a terrible time in many school settings growing up and, now that I have kids that are in school, I think a lot about what it is that they might be learning, both about themselves and the world. Doesn’t it make you wonder if all the kids who are “hyperactive” and “disruptive” in regimented school settings were allowed to be differently in ways that might work better for them…well, that’d probably be a lot of happy kids.

    Re:
    “I do ask, is all biomedical psychiatry oppressive? Is there any practical use for it? In some cases it seems that people cannot function without psychotropic medications. If one finds such drugs helpful, how is that oppressive?”

    I don’t think it is. I don’t ever deny that some people have some really terrifically difficult ways of experiencing the world and have to contend with all sorts of things to process and cope with and live through. For some people, it takes enormous effort to stay well on their own terms and, realistically, a lot of people do voluntarily use medication conscientiously as tool. This is obviously not an endorsement for medication in any amount, because I do think that there are ways to heal and navigate even the most wretchedly horrid of human experiences…but, it takes time, and it takes support, and it takes access to resources of perspective and compassion that many people are not afforded.

    I don’t think it is oppressive for an adult person to do their research and weigh their options and consider the consequences and drawbacks and to make their choices about what works for them, informed to the fullest extent possible.

    The oppression comes in having our understanding of ourselves misconstrued and maligned and in being told that we must do ‘this’ if we are identified as
    that’ and in being severely restricted in one’s ability to act in a self-determined way.

    Biomedical psychiatry is, however, based on ideas that really aren’t so true and has all sorts of nasty connotations. I consider myself to be neurodivergent, and I think that some people do have differences that can be troubling to them under certain circumstances. Sometimes, like most of our human experience, these differences involve activities in our brains and bodies.

    Difference is not disease.

  • Thanks for your appreciation and for identifying yet another group that is vulnerable to psychiatric maltreatment. Do you know of any TBI advocacy groups that are working on helping people to navigate the role of psychopharmacology in their prescribed rehabilitation?

    I am really hoping that people will volunteer some additional links and insight about compound oppression, i.e. when being identified as a member of a particular group makes it more likely that one will be mistreated in other realms, as well.

    For example, race-identified minorities are over-represented in foster care systems and kids in foster care are very vulnerable to forced psychiatry and additional abuses.

    There are all sorts of ways that, throughout history, medicalization and pathology of the human condition has been used as a tool of exploitation, and as a justification of direct or indirect genocidal intent. We seem to forget that the forerunners of our modern medical establishment once told us that those of African descent were “genetically inferior” – a claim that most people today would agree is absolutely and atrociously untrue. They told us also that women were the biological subordinates of men, prone to “hysteria” and unable to act in the full capacity of human for the purpose of voting or business. Most people today can easily identify these claims as rubbish.

    Yet, we seem to forget that it wasn’t so long ago that these disparaging views were held as scientifically true and were used as the basis for laws that codified discrimination.

    Why are we so quick to trust the “experts” that tell us that X is the cause of Y when history clearly tells us that the answers they offer are apt to be wrong?

    Which brings us to force and the tendency of the “experts” to impose (through culture/myth and law) their agreed upon perspectives onto the human populace in ways that divide, confuse, and diminish our collective potential.

    Happy Martin Luther King day…while we’ve come a long way, it seems we’ve still got a ways to go.

  • “However, what appears to be most problematic about Western Civilization—in contrast to many society’s with little or no schizophrenia—is Western Civilization’s discomfort around people who display certain behaviors outside of ordinary experience. This discomfort results in objectification, coercion, and other forms of violence—emotional and physical.”

    I appreciate you clearly making this link between societal constructs and treatment and ways of being that are clinically defined as “schizophrenia” or “psychosis.” I think a lot about the role of culture/setting in subjective experiences of madness and, certainly, being informed that one’s experience is a highly undesirable “disease” will likely lead that experience to experienced as frightening and negative.

    However, I also wonder if particular aspects of Western Civilization itself, e.g. the demands of the regimented Western workplace, the loudness and loneliness of our cities, the codified lack of freedom to express ourselves, and the severe and persistent knowledge that one’s country (in the case of the US) is engaging in horrific things around the globe and that our history is full of blood and injustice…I wonder if perhaps these factors also may contribute to experiences of madness.

    Of course, it seems that really almost any old thing gets called schizophrenia these days – from spiritual exploration, to poetry, to anger and confusion about one’s purpose.

    You’re right – these are core traits of humanity and to be human is not a disease.

    Thank you, also, for the additional history re: fascism and “mental illness.”

  • Hey, mjk and David – at some point, I’d really like to talk with y’all about how to possibly explain to the likes of Steinberg, Torrey, Jaffe, etc. that what they call a disease is actually an elegantly complex age old dance between spirit and sense and self/world dynamic.

    Do you think they’ll go for that?

    (ha.)

    🙂

    Much appreciation for you all.

  • “I’m not sure this formulation also suggests particular paths forward for recovery.”

    In my mind, just having the opportunity for honest and dynamic understanding of one’s experience can help to make clear a recovery paths. You have to know what you are recovering from and what you are recovering.

    Also, I appreciated the question about so-called extreme states and diet. The link between our nutrition and our mood states and modes of processing and cognition is really strong. I have to be sure that I get enough of a particular vitamin to avoid depression…or, as mjk by proxy of Jonah noted, evil spirits…low points in a wave pattern, the ancient metaphysical forces of radio…who knows?

    (by the way, madincanada, if you’re not familiar with it, check out http://www.beyondmeds.com for interesting articles, links about diet and ‘mental health’, plus a lot more.)

    Which brings us back to the question Mike Cornwall asks again and again: If we all agree that madness is not a brain disease, what is it?

    I’d hazard a guess that our approach to madness must be as myriad as madness itself often is?

    Viewed from a biopsychiatric perspective, it is a brain disease.

    From a psychodynamic perspective, it can be a culminate of trauma.

    From a Jungian stance, it is the waking dream of the subconscious in the universe.

    To Campbell it was the hero, coming home.

    How many different views of the many forms of human distress are there and have there been. How many different words have tried to name them?

    As John H. up yonder noted, it is fairly simple to give people a chance to express what, in their mind is happening and to meet that expression with kindness and acceptance.

    However it is not in the narcissistic minds (thanks, Marian) of many practitioners to be inclined to sit with, listen to, etc. – nor do they have the time and nor could many systems even operate without diagnostic codes. The logistical prospects of a transition to a system without codes is almost comically nightmarish. There is a lot invested in those words, those codes.

    Which is why community-based and off-grid mutual aid networks and spaces like Hearing Voices and Icarus are so, so important.

    I diagnose the mental health system as having Diagnoses. I can’t begin to think about how one would go about trying to advocate for a shift to no diagnoses in formal systems that are built on diagnosing people.

    I think in some alternative settings, respites and education centers, if diagnosis must be given, a “temporary” diagnosis is given…meaning that one has a “brief reactive psychosis” as opposed to “chronic paranoid schizophrenia” or some “adjustment disorder” as opposed to “major depressive disorder.”

    I’d prefer it all just be called livin’ and learnin’ – but I don’t think that’d fly with SAMHSA.

  • Thank you so much for your thinking about this. It was particularly relevant to me, as I’ve been so troubled by the apparent gulf between where I stand and where the common narrative may place me.

    “I believe that every crisis is an opportunity.”

    Perhaps we are at the point in crisis and resolution where everything hits the proverbial fan, comes spilling out onto the tables…and we’re able to see the extent of the mess we’re collectively in.

    Unlike some, I don’t tend to think that the majority of the people who support forced treatment and violent psychiatry are inherently hurtful people. I like to think that they are just operating from what they know, just as we are operating from what we know. I indulge in considering the possibility that most people are trying to do what they believes is most right, wise, and good.

    One of the things that bothers me so about the disease model of psychiatry is that it really does present a bleak and fearful estimation of the human condition and its potentials. When I read things that, for example, DJ Jaffe has written, I glimpse what I think might be fear just under the surface. It’s unfortunate that these ideas and these practices have constructed realities that are so distorted and tragic.

    I do think there are solutions and that there are pathways toward some common ground.

    The nice thing about crisis is that pushes us to find new ways of being and often teaches us a great deal about what is most important to us.

    That being said…PEACE.

  • Thank you so much for modeling the transformation of idea and practice and thank you for noting some of the more positive media that has been generated over the past year.

    It is is easy to only catch the worst news and to lose sight of the voices that are, slowly but surely, bridging dialogue and generating consideration.

    I actually have a lot of faith in intelligent and compassionate people to recognize the potential of humanistic approaches and reading your reflection reminds me again how vital it is to meet people where they are at and to honor the efforts they make toward a better understanding.

    Thank you for being a kind and informed voice of reason from the ranks of the professionals.

    We are all living and learning.

    I am glad that there has been progress made in the form of acknowledgments that brain-based explanations and medication are not the end all be all. However, as a person who is deeply aware of the fact that millions of people are being harmed and misled by disease-model constructs and treatment, I do not understand why we (those vulnerable to coercive and forced treatment) have to wait for the professionals to figure out a better way to think about what might be best for us or why they even have a right to think anything at all about what might be best for anyone other than themselves.

    People who have earned the right to diagnose and treat and people who have won their way to positions of influence have a responsibility to do no harm. While I’m glad that people are coming around, I wish they’d recognize their responsibility (to people they serve, their society, and the ethical integrity of their profession) to hasten the transformation.

    The disease model is alive and well. Right now, people’s lives are being wrecked by malfeasant psychiatric intervention. It’s lovely to watch the slow unfolding of ideas and realization, but I don’t particularly feel comfortable with the thought of psychiatrists and traditional advocates taking such sweet time in figuring out how to best uphold their oaths and missions while their colleagues continue to participate in practice that has been shown to be harmful.

    The time that is being taken can be measured in the futures of children.

    I am grateful that you have chosen to share your voice, insight an expertise here.

    Here’s to a transformative 2013!

  • David, I appreciate you and Michael’s commitment to trying to answer that question, “If madness is not what psychiatry says it is, what is it?” Thank you for the references and beautiful excerpts, articulations.

    I think the question has been answered, time and time again, in story, song, and poem. It has been answered in essay and theory and it has been answered, even, in research.

    We know that the human experience is the result of subjective interpretation of objective stimuli and that we are, indeed, very sensitive creatures. We know that our minds and bodies are integrally connected and that we are connected to one another. We know, also, that we are touched by the world and what happens in it.

    The meaning we place on our experiences has everything to do with what those experiences may entail.

    It would be interesting to firmly establish the working dynamics between neurology/stimuli/affect and outcome in madness, to pinpoint what the process is, to describe the mechanisms of madness itself.

    It does seem a little close to biopsychiatry. doesn’t it?

    In my thinking, it’s really quite different, because if we were able to establish that this factor (A) and this factor (B) (with x number of factors) tend to create subjective experiences that are self-described as having distinct qualities of madness…

    (…and what might those qualities be, anyway? E. Saks describes those qualities as being nightmarish. What was was nightmarish about it? The disreality? The uncertainty? The content? What was the content? Why was it nightmarish? “Nightmarish” is a reaction to a state, which then constructs that state in reference to the reaction. What is the state that people are reacting to? What drives it and what creates it?)

    Madness is not a human illness, but something much more core, vital even, to our human condition. It is what we make of it that determines what it is in our lives and in the context of the world as we see it. The same could be said for anything.

    I have, in my own experiences, found that the thought that I have a serious brain disease that will doom me to struggle has made many of my experiences fraught with existential frustration and despair, i.e. the fear factor.

    When it occurred to me to think that perhaps I was sensitive, perhaps I was clever, perhaps I felt deeply things that were easily ignored by most people…and that perhaps there was some meaning in it all, some purpose…well, my experience of madness changed entirely.

    While I find conceptual theories of madness to be lovely and interesting, they are – themselves – subjective understandings, externally imposed musings about other people’s experiences.

    Madness is very personal and, particularly, in transformative madness (and most madness has the potential to be transformative), it is crucial that we be empowered to find our own meaning.

    Despite individuation, it seems to me that there are a few known attributes that are common across people’s uncommon madnesses and I think it is important to explore the intersections between madness and a certain autonomy of thought and depth of heart, a knack for holding big ideas in mind, a sensitivity to dissonance, and a history of being deeply hurt by those or that which one trusts.

    In so many ways, madness is a perfectly reasonable response to tragically unreasonable circumstances.

    …but, how do you quantify the qualitative?

    Regardless of subjective phenomenology, I think it’s fair to hypothesize that so-called stress hormones have something to do with the manifestation of madness and, there again, fear is at the core of it.

    The answer to madness that manifests as a response to duress is not to deem the person “mentally ill” and put them on bludgeoning drugs. The answer is to see madness for what it is…a human process.

    This brings us back to the need to somehow persuade more accessible public understanding of what has been well established in the humanistic traditions.

    As for Belinda’s observation that psychiatry has failed in identifying human difficulty that may lead to danger. I think that a lot of people are currently at risk for being wrongly identified as being dangerous and that we ought not encourage psychiatry to try to do a better job at figuring out who is dangerous or not.

    In many cases, psychiatrists seem to not have the slightest idea as to what they are doing and their reasons for treating people as they do is completely misguided in both science and ethics.

    Yes, they assumed the right to impose definition, but they don’t even have the language or perspective needed to even understand what it is that they seek to define and the tools they have to work with are, frankly, quite crude.

    I would not trust a disease-model psychiatrist to tell me what was best for me, or for my child, or for my community…in the vast majority of cases, they simply do not know.

  • …wonderful comments and reflections, questions…if I didn’t have to journey to the next county to get wood pellets for the heat stove I could spend all day conversing on the ins-and-outs of this.

    I’ll be back later…thanks, all, for discussion and for bringing up a few missed points and nuance, e.g. Steinberg’s remote diagnosis of Adam Lanza as having schizophrenia, the fear affect, the role of psychiatric meds in aberrant violence and the violation of human rights and dignity that paternalism in disease model practice entails.

    I was thinking last night about how the likes of Steinberg, Torrey, Jaffe, et al. have made “schizophrenia” a bogey-man of the uncertain and unstable modern age.

    They are, it’s true, fear-mongerers extraordinaire.

    Yes, an organized response to the party-line would be helpful. I’ve considered what the effect may be if “we” (all these activists and advocates and change-makers) flooded national and regional media outlets with productive counter-narrative…raised the voice a little through quiet print.

  • I loved this hyperbolic capture of the prideful “one-who-knows-best” and your keen appreciation of the fact that, in seeking degrees and licensure, many are smugly “earning” the right to impose their minimally informed external views on others.

    Diagnosis becomes a game, “treatment” an experiment.

    The crux of human rights violations in mental health lies in this tendency for the professional to impose his or her own expertise upon people that they do not know, minimally care for, and whose “illness” the professionals benefit from.

    Good luck with the new career path and thanks for sharing your keen and lively language on the subject of self-serving paternalism in professional mental health.

  • 😀

    I’ve learned not to write anything to anyone “important” with the hopes of response. I am content to write for the sole purpose of winging some small facet of perspective out into the mix, with the hopes that some aspect of what the words carry may lodge itself some place useful.

    In my mind, non-response is dialogue, too…it says a lot…and I’m taking notes.

  • This is a wonderful piece of writing and it inspired me as a mother and as human being. I am also grateful for the chance to try to see the world (and myself!) through my children’s eyes.

    Thank you for reminding me again how important is to pay attention to the little voice in my heart…and the bold, clear voices of my kids when they tell me what they need, what they think, what they dream and fear.

    I think that most families have lost something vital in having to structure their lives around work. One thing that isn’t talked about much is the way that the cultures of economy set families up for a disconnect from one another…parents stressed and strained, kids isolated and confused…everyone distracted by television and the latest material must-haves.

    I wonder sometimes what might be possible if families advocated for their right to truly be families…to simply have time and headspace to be together and to really know one another.

    That’d be quite a revolution…

  • “Someone I was working with who worked for the provider stopped working with me as she saw my letter attacking her work. It wasn’t. Hey ho. These things happen.”

    Why is it that when we present other points of view some people take it personally and shift into attack-and-dismiss mode?

    It’s the old offense/defense framework that media and politics have put us in, a stancing that keeps real dialogue and growth from occurring.

    It’d be wonderful if the mental health system in this country were mature enough to appreciate that it may have a thing or two to learn.

    It’s not, after all, about them.

  • “We can only keep trying.”

    Yes!

    There is so much that bothers me about the way media frames “mental health” and responses to it.

    I think about what the parent of a young person who is having a hard time might feel after reading a piece like Steingberg’s… that slow cold sinking fear that will stay with them through the day. I think about how much that fear affects people and society.

    Further, I think about what may become of the lives of people who are “treated” by doctors such as Steinberg.

    People deserve accurate information about hope-giving alternatives, which really aren’t so alternative at all…just people being kind, being accepting, giving one another space to safely face the truths and fears in their experience, sharing information and perspective, giving one another a chance.

    That’s not so radical. That’s just human.

    Yes, we must keep trying.

  • ‘We saw it on our first date. He’d always hankered after one. After he bought it two months ago he stopped the pills completely, and he’s been fine since.’

    🙂

    I wonder if he’d zeroed in on that little bit of red nostalgia earlier on he’d have been able to avoid all those sleepless nights and expansive and searching endeavors. He wasn’t satisfied, and then he was.

    I wonder, also, if it wasn’t the car he wanted, but to remember the feeling of wanting the car, sitting in a theatre on a first date, when the world was wide open, before he knew anything about psychiatric hospitalization and troubles with the mechanics of sex.

    I like a good story. Thank you.

    This also a great example of collaborating conscientiously in minimizing psychiatric medications. I appreciated the shift in dialogue from struggling with a “mental illness” to learning to sustainably manage individual strengths and enthusiasms. Good stuff!

  • Hey David – Not sure if you’ll catch this, ’cause it’s been a few days.

    Time is so slippery around the holidays and there is always so much to say. It meant a lot to me that you responded to this and that you appreciated it.

    I have a great deal of respect for your insights and the way you approach these ideas about “mental health” and human experience.

    I just read over your comment again and I so love these questions:

    Does our tendency for verbal diarrhoea have much to do with “being fully present” for each other? Imparting, by “the transmission of affect” those oh so vital “attachment” needs?

    I have often thought, quite consciously, that my long-windedness and the impetus of emotion that writes so many of my words may well be rooted in a basic human need to assert myself to the world and to hope that someone finds some value in me.

    There is something very damaging about being raised in a framework of external definition that defines one as never being quite okay, bringing a hesitation to any proclamation of love, breaking the eye contact.

    Many times I have written of wanting to be seen clearly, to be seen at all, and I absolutely believe that the role of psychiatry in my family relationships compromised that most basic security, the ability to trust the people that you love and that love you.

    You are spot on in your identification of the paternalistic other, which seems to be a pervasive/severe and persistent cultural force in the western world.

    There are so many agencies through which we are reminded that we are not to define ourselves, and we are not to question the expectations set for us. We are not to challenge, we are to obey, we are to comply. It’s for our own good.

    Oh, it’s all such rubbish.

    It’s so easy to become beleaguered by all the troubles of the world, mass atrocities and the million tragedies that occur every single day.

    There is little pleasure in seeing clearly when what you see is so much apparent blindness.

    Is there a myth about a person who could not see and who wished and wished (and perhaps even bargained) to have sight, to have vision…only to find that when they opened their eyes, they saw that the rest of the world was blind and so with sight came a great sorrow that others could not see, leaving the one who sees wandering and trying, through will and magic and desperate hope, to find someone who will see with him?

    It is my great hope that the practical mechanics of consciousness shift and shared understanding will work and that, slowly at first and then with great vigor, people will realize how thoroughly psychiatry – and particularly pediatric psychiatry – demeans and destroys what may be our most basic human notions of a worthwhile self.

    It’s a human rights issue. We have the right to not be forcibly medicated. We have the right to know how our minds/brains/hearts work and to explore those workings in ways that inspire us and reinforce our self-identified strengths.

    Thank you again for taking the time to comment and for bringing to light the ways that systemic/third party paternalism trickles down to our families and for noting the effects of basic human needs – connection, trust, love – going unmet, denied.

    Just as our systems of culture and economy have mediated our understanding of what it means to be human as individuals, they have also significantly distorted what it means to be human together.

    Hope you have a good night and a decent enough holiday season.

    Faith

  • This is such fantastic writing and perspective, Sera! You’ve pinpointed the damned-if-you-do-damned-if-you-don’t tendencies of mental health screenings to inevitably result in evidence of a “mental disorder”.

    No matter what you say or how you answer, you simply are not okay or are at imminent risk for being not okay. As people who have been lucky enough to have gained awareness of the mechanisms of marketing and manipulation around mental health topics, this is so obviously social and economic engineering.

    I appreciate your recollection of walking away with your new diagnosis and your first prescription. There have been times that I have also found something strangely appealing about the thought that there may be an organic cause for struggle, with a nice little label to set me apart as a person who “couldn’t help it.” The subtext of that ironic comfort was actually deeply damaging. As you indicated, there is a propensity for every aspect of one’s human experience to be defined from the axis of diagnosis and that is ultmate insult to self-determination, validation, and actualization.

    Thank you for exposing this marketing tool of the mental illness industry and for shedding some light on the ways it distorts and yet defines our humanity.

    Doctors really get paid for screening children?

    Does MHA get the results of the screenings?

    Thanks again…

  • Thanks so much for bringing your wise andcompassionate voice to the conversation, Jen, and for keeping the focus on healing and questioning the role of psychiatric meds in violence and struggle.

    It is so alarming to me that people are missing this very important point and that we are so persistent in attributing human struggle to an illness, when the cause is so often relational and trauma based.

    Thank you for sharing your insight and your wonderful heart.

  • “What does it all mean?”

    That’s such a wonderful question. Just to clarify, in a way, my family did tell me there was nothing wrong with me…they told me I was special, and that I was just fine, and that the root of my problems was not something real and true that could be unraveled but the irrational effects of a presumed chemical imbalance.

    Confusing? Yes, indeed.

    My hope is that people can find some inspiration to consider the role of prescribed ideas and externally imposed explanations for the landscapes that make our internal world, from which our movements and meaning in the world are charted.

    Defiance played a big role in my recovery. I was like, wait a second, what the hell am I letting happen to my story?

    This was a couple of years ago, sitting in an old green chair and so shut down I could barely breathe. “This is what it must feel like to slip into catatonia.” I felt as though my mind were finally completely severed from my body and that something vital in my heart had sputtered out. This was an afternoon alone, following a particularly traumatic and fear/stigma-fueled period of psychosocial/emotional crisis that left me feeling fairly convinced that I was damned to be a chronic mental patient and that nobody would ever let me be anything else. I was tired of it. I was sick of it, deeply ill.

    Then I pictured what would happen if I gave up. I pictured my parents picking me up from a group home to wheel my silent body to my children’s graduations…and how I would be the saddest story that nobody would ever talk about and how that would affect my children’s stories…and how my own mother would look so small and old behind the wheelchair.

    I felt something crumble a little in me and I simply refused to let that be my story.

    …and then I realized that, in my heart, I could make my life whatever I wanted it to be, that I could make whatever meaning I wanted of it and that I did not have to view my experience through a fatalist lens.

    We all just do the best we can do at the time, given the circumstances and the resources we may have available. One thing that has been invaluable to me has been perspective and mindfulness, breaking the day into a hundred little crossroads, thinking about what I might be able to make of each moment.

    “How do I want this to unfold?”

    “What do I want to come of this?”

    “How do I want to participate in this?”

    “Who do I want to be?”

    Things do start to look better each day, huh?

    I find that I am often excited about tomorrow, even if it is just a usual day…not that there is any such a thing as that.

  • Thanks so much, Rossa, for commenting. You’re a wise mother and it’s true, those simple shifts in thinking about power/control/ self-determination can make a huge difference.

    I used to bribe my kids, too, and wait on them hand and foot. I was a perfect helicopter mother, hovering and swooping in to save the day.

    I don’t do that anymore, because I realized I was ripping them off of the joy of learning to (age appropriately) take care of themselves and that, if I did that, well…then they wouldn’t be very likely to be able to take care of themselves, which seemed somewhat opposite to the function of parenting in societies.

  • I wish there was some way to burst the media bubble that surrounds the voices of survivors. I mean, wow, here you have a AN ENTIRE WEBSITE of esteemed and compassionate professionals, many of whom have worked the front-lines of humanity for decades and many of whom are survivors and many of whom actually work for and in some cases direct the mental health systems…and yet the media spreads inaccurate vitriol that distorts, manipulates, and misleads people who are so trusting of what the “experts on the tv” say…and it ruins people’s days, it puts worry and fear into their hearts, changes the way they see the world, they way they see each other.

    There are actually so many solutions that could be implemented, evidence based and well established ways to support healing and true recovery.

    However, our culture and media are aligned with the medical model and its language and its treatment, which really are based on absolutely terrible ideas about human beings.

    Here’s another thing, you know how my parents found out that I was smart? Well, I wasn’t just smart, I was a “genius.”

    (Note: Heart is far more important than head.)

    Nobody paid much attention to that.

    I am not being conceited or boastful or self-promoting when I suggest that if someone gets 2 points shy of a perfect score on the GRE Logic and Analysis test, without really paying attention, people should probably PAY ATTENTION…especially if this person (after 23 years of involuntary participant observation and hundreds and hundreds of hours of deep contemplation) figures out that what is called a “mental illness” often has everything to do with being brilliant in our own ways.

    Somewhere, everywhere, there are little kids with golden hearts and fine minds that figure and fix and THEY ARE BEING HURT and damaged and…scared…and alone.

    Right across town from my house is a hospital with a locked pediatric psych unit. I can see it from my porch.

    There are ways to help kids learn to heal fear and anger, to manage the hugeness of their feelings and the depth of their wondering and how to dance freely while being out-of-step with the world.

    I WANT THOSE KIDS TO BE OKAY.

    The world needs them.

  • “the parallel universe that existed for my Mom”

    Thank you so much for sharing insight on the contexts in which struggle arises.

    I cannot help but to see how much relational pathology there can sometimes be in the space between mothers and children, all sorts of unmet needs and misappropriations of meaning and identity. I think if mothers were more honored in their role and more supported in general that maybe they wouldn’t be so vulnerable to the mental health system.

    For a lot of moms, their kids therapists and doctors are the only one’s that listen to their (the mother’s) fears and worries and affirm to them that, “Yes, it is hard, but you are strong, you are doing the right thing…”

    Unfortunately, in these therapeutic relationships the “right thing” is often forcing ones child to take medication that is physically and neurologically harmful to them and investing in a belief system that puts mothers in a position that requires them to view their child as having a brain disease that promises them a life of struggle and a lonely childhood of restraints and appointments.

    It takes so much strength to walk away from toxic family, but it’s true, in order to heal some people have to distance themselves from the source of so many wounds to self and value.

    The thing is that, even if we walk away from family, they are still a part of us. We then become people who have walked away from our families, because our families became unsafe for us in some way.

    It is so amazing to me that the mental health system has the power to completely change our personal histories, to alter the outcomes of our stories…and that, so often, people’s lives are written all wrong by the professionals…and we pay them to do this!

    What, really, are we buying?

    A lot of adults who are in the mental health system began mental health treatment when they were younger, often in the context of trauma, familial disruption, or other major stressors. Would they still be in the mental health system if the mental health system were doing its job?

    What is the job of the mental health system, anyway?

    Oh, I shudder to think what is going to happen when ALL THESE KIDS grow up…if they survive.

    I don’t want any more kids to kill themselves because they are scared of what might become of them.

    Thanks for sharing your story…it’s so important to look at the bigger picture.

  • Oh, thank you, Chrys for so wonderfully articulating that bittersweet dance between protecting and letting live.

    Through my work, I had the chance to become a Love and Logic facilitator. It’s a parenting program that is pretty big here in the States and does a fair job of offering strategies to learn how to honor and respect children’s choices, let them learn from the natural consequences of their mistakes, and to approach one another with empathy and perspective. I teach the class in a setting the serves a lot of people that are dealing with things like intergenerational abuse, trauma, poverty…and it’s just so hard for people…it’s sad and remarkable, how much the odds are stacked against families and kids these days.

    So many people are strained in so many ways, all struggling.

    There is so much we don’t talk about when we talk about so-called mental health. My background is in sociology and cultural studies and I just cannot help to see this more as an issue of societal ills than anything that may be mysteriously imbalanced in any child’s brain.

    Not only are we all alone together, we are all connected.

    When I read about those children that died last Friday, I thought of my own children. When I read about Liza Long’s son, I felt my own story.

    I remember that after I had my first child, I felt that I had become part of some big and sacred club, because only mothers know how it feels to be a mother.

    I have so much faith that mothers and fathers really are trying to do what they truly believe is the right thing to do. It makes me so sad. I want to say to them, “Wait! Stop! Don’t give up hope! Please, try to see it another way! The “imbalance”? It’s fear! It’s stress! It’s sadness! The cure is to live and let live and to live together! Please, don’t see your child as sick! YOUR CHILD IS NOT SICK!”

    It just feels so urgent in my heart.

    Much Love.

  • Hey, Laura!

    You know that I value your voice and wisdom as true gold in a tarnished world.

    I don’t think people quite understand how close this is for some people. It took me hours of facebook commenting to work out my thinking about the bigger picture.

    For the sake of transparency, I actually do have a political agenda.

    I’d very much like to see our cultures and public agencies promote health and healing.

    I’d like very much for people to be informed and empowered.

    I’d appreciate human rights being honored and upheld.

    All of these are both personal AND political interests. I don’t see where the line between the two realms is when I think about simply wanting the world to be a more compassionate, reasonable, and uplifting place.

    I do, after all, live here. It is my human responsibility to be concerned when our culture and practices are structured in such a way that children are routinely harmed in ways that are deep and lasting, and which do pose a threat to our society, because a lot of really brilliant, good-hearted and special people are getting lost.

    It is my human responsibility to care that, over the past fifty years, massive economic systems of great influence have created and enforced a normative culture that promotes violence, bullying, war, despair and cheap exploding plastic thrills.

    I keep waiting for something to give the world that big bright *a-ha* – the tipping point in the revolution of the human heart, where people look around and shake their heads and say, “Whoa! What the hell is going on around here? We are paying people to hurt our kids and we think it is the right thing to do? That’s crazy!”

    I wish that people would value the stories of the survivors more, and that they would, without debate or critique, receive the gifts we offer when we hope with all our hearts for the futures of all the kids that remind us of the kids we were.

    I want all those kids to survive, for the sake of their stories and so that their mothers would have better stories to share over coffee.

    When I first read the I Am Adam Lanza’s Mother piece, I felt very conflicted. I didn’t want to judge, but I was like, “Really!? Really! Oh, no…she didn’t really write that…” and I thought about all the reasons a mother might frame her child in such a way: fear caused by being misled, misinformation, stress, confusion, frustration, revenge…attention?

    I have to tell you, as a mom, I’ve noticed that there are some really peculiar social scenes that have arisen around pediatric psychiatry, mothers over coffee after the screaming preschool drop-off. “He finally got into so-and-so center. The appointment is 3 months out. Maybe they’ll be able to figure out a diagnosis.”

    Really, it’s like a subculture amongst middle/upper middle class mom’s. It’s great that the mothers support one another in talking about their children’s difficulties, trading behavior modification strategies and medication side effects, opinions about whether syrup or sprinkle-form are easier to administer.

    What are they supporting and why?

    Everyone loves a tragedy, to shake their heads and say how hard it all is…and it is hard.

    However, maybe we ought to be having a different conversation. Maybe we should be talking about just how hard it really is, and why, and how we all experience that struggle in different ways.

    It is hard to raise a deeply sensitive child, because the world is no place for sensitive children these days.

    Instead of trying to change kids, why don’t we try to change the world?

    There are so many bright, sensitive, brooding and thoughtful kids, with deep feelings and vivid dreams, a depth of fascination for the things that other people don’t notice and a unique way of making their own world to be in…kids who struggle to go out walking and talking and playing in the ways we wish they would, because we think that’s what it means to be happy, to be normal.

    What if they are happy, just being who they are? What if the reason they become angry, the reason they become depressed, is because someone isn’t letting them be who they are or refuses to help them to find ways to both be who they are and to be in the world as they are expected to be?

    It wrecks a kid to feel that their grown-ups don’t like them.

    Kids, especially little kids, don’t know anything about criteria or treatment goals, they just know that being held down is frightening and that they have to have shots or take pills to make them “sweet, so that you can go to school.”

    Thank you so much for devoting so much of your heart and wonderful mind to writing and working and living as an advocate.

    Much Love.

  • There are so many voices and people that I value.

    I have to say that you three women are all sources of true strength and inspiration to me. You all have nurtured me in your own ways. Ha! Monica, you don’t even know how much guidance I get from receiving the posts to Beyond Meds. I get them on my phone and, always, they help keep my head clear, my heart informed, as I think about all of this…all of this…life.

    I sinerely wish that people who didn’t think that there was any other way but to be frightened and sad could know that there are other ways…and that those ways lead to happiness.

    To be happy we, as humans, must simply be who we most truly are in the best possible ways for the most possible good.

    Thanks for appreciating who I am.

    Much Love!

  • I came back to post my response to this essay and found that David B. had contributed his usual treasure trove of insight and reference. Thanks so much for your perspective and your recognition of the limitations of language in interpretation and expression. I appreciate the blend of philosophy and psychology and the dash of neuroscience is a welcome reality.

    Anyway, here is my initial response:

    Hi Seth – This is a great little overview of history and ideas. I appreciate the insight on the history of the movement(s) and their respective areas of focus.

    I am relatively new to these circles of dialogue and am consistently aware of how difficult it apparently is for different factions to “get on the same page,” so to speak.

    The recent focus on human rights – in regard to both non-coercive/forceful treatment AND the right to self-determination in mental diversity – seems to be a good opportunity to reinforce complimentary interests and actions.

    In my thinking, the right to spiritual freedom is a human right that is often sorely denied those who meet perceived diagnostic criteria and most mental health systems are woefully incompetent in areas of spiritual compassion or guidance. There is some work being done in California to create a more spiritually accomodating culture of mental health care, but I am not sure if what their approach is to “psychosis” which has a strongly messianic component. It seems that the approach to such intense spiritual experiences (even in “alternative” practice) is often to help a person to “get over” their “delusions” or to help them to package their state of grace in a way that is palatable and non-offensive, to focus on spirituality as a tool in recovery.

    It is difficult to conceive of how “we” could establish an accepted paradigm which affirmed people’s sacred experiences in madness as being both real and vitally important.

    I see that you are proposing a new organization, a new movement, an offshoot of the more general Mad Pride movement.

    How would such an organization persuade the public that it was more than some “wingnut consolation prize for the god-gifted loonies?” (<- this is not a real quote, just something I can imagine someone who is sarcastic and cynical saying from the smirking perspective of the culturally typical mind.)

    I am – as you know per our previous dialogue – one of those people, a mad person who came to the heartfelt conclusion that somehow the multiverse – an "ecosystemic God force" – was communicating with me and through me.

    Like many people in the grips of a deeply personal spiritual enlightenment, I made a sincere effort to find someone to listen to me, to help me figure it out.

    I called churches and synagogues, wrote professors and newspapers. As you know, I even tried to email the Pope.

    It is difficult for me to articulate how crushing it was to realize that very few people care much about the visions of the purportedly mad, or the messages that they believe they may have gleaned from the workings of the world.

    I have found little space for such discussion within the movement, save for a few individuals who themselves know the gravity of a divine calling and live within the strangeness of knowing their own shadow script, cued by synchronicity, sense, circumstance, and small signs abounding.

    Hardly anybody talks about this reality that so many people must try to somehow fit into their lives.

    In spite of the fact that the content of my "psychosis" was expansively benevolent and deeply compassionate, the confusion and emotional upheaval that came about by witnessing what I still believe was/is God divined by the skies and the trees, and the insects and the radio and strangers and timing, well…it has been a bit of a difficult time, as such things often are.

    I am still trying to find my footing. Unlike many other people, I chose to keep my belief that the world works in old ways and that I am somehow privy to those workings (as are we all, whether or not we realize or appreciate it).

    (Note: I don't actually feel that I had much of a choice, as it was made clear to me that if turn from what I know, I will be bound to a small and conflicted life that I would slowly die within, a death that would contribute to the thwarting of a better possible future in the world.)

    Sound dramatic? Oh, it's all very dramatic…life and death and past and future.

    It would seem to me that a particularly valuable function of an organization that sought to support people in their realization/interpretation of purpose and experiences of metasense might be simply offering a safe space for people to share their ideas and realities, without fear of scorn or disregard.

    Some of this may already be happening within the Hearing Voices Network. I don't feel that Icarus is a consistently safe space for such discussions, as I have witnessed people being told that their sense of god-calling is 1) very poetic and 2) the work of the devil. Sometimes the really far-out posts are simply ignored or answered with something along the lines of, "Hope you feel better and can get some rest! Mad love!"

    I do not appreciate it when I speak of things that are very real to me and they are dismissed as metaphor or "fuckery."

    Still, as you know, I hold significant reservations about any movement that seeks to define one's experience for them.

    Who are "we" to say that a person must claim their vision as a true-to-god messianic calling?

    While prophets are lauded in the centuries following their deaths, being labeled a modern-day prophet – having not only a divine right, but also divine responsibility – could conceivably be just as isolating, punishing, and alienating as being labeled a "chronic schizophrenic." Prophets are notoriously treated poorly while they are living…laughed at, run out of town, burnt at the stake and what not.

    Maybe the word "prophet" isn't the correct word?

    Visionary?

    Seer?

    This brings up the issue of role expression and expectations. Would these Mad Messiahs – or whatever they might be termed – be expected to lead great rallies and offer boldly inspired sermons on ecosystemic unity? Would they offer quiet and holy consult to the troubled of the world? Would they stand quietly and hold their hands out to the sky? Would people watch?

    What, exactly, do you envision us doing, Dr. Farber? Should we become great organizers, agitators, activists? Or should we hold a sign out by the mall, "They Say I'm Psychotic. I Say God Loves Me!" ?

    Would we have to adopt a unified, panentheistic (not sure if that's spelled correctly) view of God?

    What if God as interpreted is the pronomially male God of Christianity or Islam? What if someone believed that God was speaking to them through David Letterman's side comments?

    Would you tell them they are wrong in their thinking?

    What about the deeply inspired and deeply wounded individual that feels the power of the world and the weight of calling and, in the context of their experience and worldview, decides that they are called to do something that might actually be destructive.

    These things, sadly, do happen. Perhaps if people had more resources to safely discuss what they are experiencing such unfortunate outcomes may be avoided.

    In any event, I am not sure how one might even begin to operationalize your vision of a Mad Spirituality movement. As I said, nobody listened to me when I tried to explain the very same things you write of in your book. In fact, they were cruel and condescending when I spoke to them about the sense I felt.

    I understand that it would be a wonderful thing in the world to have masses of mad people – redeemed "schizophrenics" and "bipolars" and "depressives" – rise up in a cultural wave of peace, wisdom, and evolutionary clarity about what is and is not important. I understand how fantastic it would be if mad folks could inspire people to adopt an ethos of love, humility and stewardship.

    Goodness knows I've daydreamed those happenings myself.

    In a world that worked as it was intended we'd all listen to the wise ones, whomever they are. As you well know the world is currently not structured to work as it may have been intended.

    I think it is worth noting that while madness can have a regenerative effect (like being reborn or coming back to oneself)I think it is also worth noting that many people do not have the opportunities to gain the skills and experience that may help to utilize their mad gifts. While the madness process does (for some) seem to bring some strengths to light and forge new directions, it is not as if everyone who experiences a sense of calling knows what precisely to do with that calling or how it might best be responded to, nor do they necessarily have the social/cognitive/emotional/spiritual skills necessary to handle the burden of truth and the tasks that it bears.

    Oh, it could be said that the world works in such a way that everything we've been through taught us everything we need to know and I suppose in a perfect world that might be true. It is not, as we all know, a perfect world and many people who experience madness have also experienced horrific trauma and the fact is that it is not easy to live caught between exalted vision and old wounds.

    I think that it is possible that when we are honest and true to our best possible selves, as shown to us by God (by any name), that whatever we do will serve the world well. Sometimes I like to think that just be staying alive and feeling deeply and sharing love where able…well, I like to think that might be enough. Other days, it feels like nothing will ever be enough.

    ***
    I appreciate Chrys' mention of the role of quantum mechanics in the manifestation of spirit sense and David's acknowledgement that our experiences may be affected by our specied neurochemical components of affect.

    Those lines of inquiry are well-aligned with the conclusions I myself came to about "how it all works."

    However, that's another topic entirely.

    Thanks again for your work, Dr. Farber. I hope that the vision is somehow realized.

  • You know, it’s interesting to look back on this writing and reflect on everything that has happened since May.

    Not too long before I got in touch with Laura, I wasn’t really sure if I could manage to get my thoughts organized enough for a coherent essay. I was able to write if inspired, but the boundaries of topic and my ability to maintain emotional distance from whatever I was writing about were really compromised.

    Even a year+ after my last psychiatric trauma, my mind was still in shambles in a lot of ways. Thank goodness Laura didn’t find the non-linear, mosaic form of this little writing too confusing or distasteful.

    Making this declaration here was a powerful step for me and through this writing, I made many friends and found some very important mentors.

    I went to Philadelphia on May 5th and met many amazing people, spent the summmer working and writing and processing my way through some long standing emotional wreckage that was cluttering up my heart.

    Last weekend, I was up in NYC, attending another rally and meeting people who have become friends and allies. I was worried that I’d get anxious or scattered, that maybe the noise and schedule would fray me or make me panic. It didn’t. I was absolutely fine. Better than fine, actually. I had fun.

    This January, I’m going back to graduate school, studying psychology and social transformation at Saybrook. I’ve been doing a lot of organizing in different ways and I’m increasingly really interested in building coalitions and supporting networks of alternative resources, a culture of mutual aid.

    In the meantime, I have re-thought a lot of the language I use. Even the word “recovery” is a little complicated. I use it in the sense of retrieving something that was lost. In my case, I do not think of recovery as regaining acceptable normalcy or getting to a point at which my brain works in some new, uncomplicated manner. Rather, to me, recovery means learning how to be myself again.

    I’ve been very pleased to see some of the lawsuits and shifts in dialogue. I can’t imagine that the medical model will be able to maintain viable integrity for too much longer, in spite of the systemic structures that support medical model practice and protocol.

    The marketing of mental illness has gotten very stealthy, however. I’ve noticed that now the industry is using de-stigmatization as a tool to encourage more people to feel comfortable getting diagnosed with and “treated” for a mental illness.

    That being said, onward…

  • I was just re-reading:

    https://www.madinamerica.com/2012/05/mad-pride-and-spiritual-community-thoughts-on-the-spiritual-gift-of-madness/

    …and thinking about how these considerations fit into paradigms that, ultimately, need to honor an individual’s right to make their own meaning of their experiences, while acknowledging that sometimes the crisis is in the meaning making process and that people sometimes need (whatever comforting and helpful support they may determine they need) in figuring out what exactly is going on with their minds/hearts/world.

    There is, in my mind, a lot of danger in ideas that seek to define other people’s experiences. So, while it eases conceptual isolation for me to think, “Hey! Maybe what happened to me is something that happens to lots of people!” and to consider the hows and whys of it, it doesn’t sit quite well with me to think about generalizing my understood cause for my experiences to the deeply personal experiences of other people.

    There is no clear answer, but it does seem that there are some definite factors and themes. The ways that they may play out in individual experience and meaning-making is as infinite as the universe itself.

    Most days, I actually wish that I could forget this whole issue of metauniversal spiritual mechanics and subjective experiences of psychosis, because the implications are so vast and troubling.

    However, in my own situation, it proves to be a persistent belief, logically sound in many ways if considered in light of physical science, myth, and time-honored archetypal phenomena.

    It seems like the rhetoric of spirituality has shifted to mean a conceptual peace/acceptance/okayness with the world and one’s place in it. My thinking about spirituality is more oriented toward thinking about the ways that we are actually connected to the world (nature, people, symbol, signal, etc.), the meaning we make of these connections and how that meaning impacts our participation in our lives.

    Thanks, always, Michael, for appreciating my wide-open earnestness. I hope you have a beautiful day out in California.

  • Hi Michael – Thanks so much for the mental image of state-funded mental health workers considering the possibility that “psychosis” may be something much more intrinsically meaningful and purposeful than allowed for by the medical model. The fact that these experiences are often seen as little more than the disordered detritus of broken and diseased brains is probably one of the most invalidating,inhumane, and damaging perspectives to ever have been applied to the human condition.

    It’s exciting that Oregon may be open to discussing spiritually sensitive practice in responding to psychosis.

    Anyway…

    “…the deconstruction accepted terms which resulted from the splitting of mind and body, individual and environment, and codes of living logic.”

    Ah, I knew there was a reason I waited to post my response to your fine essay ad inspiring reportback, Michael. I always appreciate David Bates’ contributions and, in my reading of the above comment, the point is made that the mechanisms of what is often interpreted and termed God may well likely operate in very real ways that are integral to our multisystemic universe, as well to our specied physioneurological nature.

    It has been well established (by so many poems and verses, scientists and theologians)that human beings are deeply connected to the world, and to one another. I don’t think very many people could reasonably argue otherwise for very long. Nobody who has ever felt peace in nature or held a child could tell you that we (as a species) are not affected by our interactions with the world. (Similarly, nobody who has ever been harmed or seen harm being done walks away unaffected, autonomous to their experience – though some, under pressure, do compartmentalize, dissociate as a way to exist.)

    In my thinking about psychosis, as a person who has done her fair share of existing in that headspace/heartspace/mindspace/worldspace/story,
    it is fairly clear that there are a few different drivers involved and that there are a lot of variables in each individual’s unique experience.

    I just spent some time reading Dan Fisher and Paris Williams’ relatively recent posts on the topic of “psychosis,” as well.

    One thing that is very persistent in my mind as I consider these ideas is the fact that, while environment and social history are acknowledged as variables impacting one’s experience of “psychosis,” many of the theories posit “psychosis” as some form of reactionary intrapersonal process, a manifestation of a mind/heart conflicted and with profound wounds, unmet needs.

    The approach of psychosis (when will we get a new word for the process? I have suggested “reckoning” and sometimes use it) as a self- transforming/preserving/destroying/clarifying
    process does hold a lot of validity in my mind and this is reinforced not only by long-standing research (for example, the impressive bibliography provided by Williams), but also through my own qualitative experience and anecdotal evidence offered up by those who, in their way, have been there.

    In my own writings from the-edge-of-the-midst-of-it-all, I maintained that what I was doing was indulging in an alternate way of thinking about/experiencing myself and the world, because my “real life” had become untenable and irreconcilable.

    However, in my culminate experience and in the experiences of many people, the role of spirit came to be very central. The variable meanings associated with the word “spiritual” could run the proverbial gamut, from internal disequilibrium caused by value conflicts, to a perceived disconnection between self, world, and meaning to a full-blown crisis of hope/faith…to the profound sense that one is deeply and transcendently (in either direction, ascent or descent) communing with gods, the multiverse, and everything it may contain?

    Given that you have yourself experienced a period of madness and have worked with many people in the throes of madness, I’m sure you’re well aware of the vulnerability that, in madness, some people have to finding themselves in a state of distinct Cosmic Oneness (to use David Bates’ term).

    I don’t like the idea that my mind-blowingly illuminating, wrecking and delivering, deeply spiritual and largely reasonable, contextually-aware “psychosis” of recent years could be reduxed to the manifestations of a desperate mind in a fit of over-compensation, concilliatory imaginary salvation.

    I definitely do think that protracted existential/emotional crisis can be a driving force in the development a full-blown reckoning with what, to some, feels very much like falling into the whole entire universe. However, I like to think that perhaps there is a greater rhyme and reason in the proclivity that some seem to have in finding themselves akin to reluctant demigods in a world written in synchronicity and signal, seemingly divine orchestration.

    I suppose at this point, the bigger question comes tumbling out:

    Are people who experience psychosis, or who are identified as being on “the psychotic spectrum,” somehow more sensitive to the mechanisms of universal world?

    Here’s another question: Are the sometimes haphazard manifest fumblings of idea and purpose often associated with “psychosis” the result of our traumatized cultureminds trying to reconcile the enormous force of a sudden universal metaconsciousness impacting our minds/hearts, brains and bodies?

    In my thinking, if those on the so-called psychotic spectrum are more sensitive (perhaps in ways involving the autonomic nervous system, perhaps in ways involving cognitive processing and sensory attenuation?*) to universal forces and consciousness
    (a sensitivity that, alone, could create severance from a sense of cohesive consensus reality, e.g. many people do report that they’ve “always felt different,” etc. etc.)…well, then how precisely is that a “disease” or even a problem?

    (Insert entire canon of literature on social control, subjectivity, market-driven fascism, etc.)

    Here’s a question: Because we are a species and many species carry traits that correspond with elements in the environment, is it possible that some people are more sensitive to universal forces for a reason?

    If that may be the case, isn’t the pathologizing and forceful repression of seeking/experiencing grace in one’s own way a really deep and wounding insult to humanity?

    (Note: I always appreciate that you acknowledge that it’s not all hallelujah and sunshine, that “the elevator goes both ways” and that some aspects of spiritual crisis can be hellish.)

    I think Anonymous’ point about human rights and spirituality is a good one. I have often been aware that my thinking and my writing about things of a spiritual nature could be easily pathologized (and has been pathologized) as being “psychotic.” There is some cruel (il)logical mechanism at play that changes the meaning of our experience, actually strips the meaning of our experience, and makes it into something that must be erased, medicated, resolved and not spoken of.

    Does pathologizing clumsy, unbridled, exploratory human spirituality change our understanding of what it is to be human?

    Anyway, glad I got a chance to check out this post. Thanks for all you do, Michael.

    (and thanks, David, for opening the door to questions re: the objective/subjective bigger picture and the role of madness in it.)

  • “And thank God, for what a liberation it is to know that – just like you – I am plainly human: irreducible to theoretical constructs, unfathomable in my fullness, aching and celebrating with pain and love, moving in all directions at once, complex and stacked, an imperfect being and a sliver of God’s perfection.

    Alas, it’s a diagnosis that works for me.”

    thank you, Steven.

  • “In my heart, I know what my solution is– any institution in which one person claims the right to be an “expert” on another person’s emotional, thinking, and spiritual existence is, in my opinion, oppressive and in need of dismantling.”

    I love you for this clarity of vision, Laura.

    I read the rest of these comments, but, really, that’s all I needed to say.

  • I so deeply appreciate your comments here. I am curious, this is just a question that occurred to me and may not be appropriate, nonetheless, I’m curious if your understanding of what drove the rage that hurt you helped you to find compassion/forgiveness? There is, of course, no need to answer…but, that is a phenomenon that I’ve witnessed…that understanding brings a bit of resolution, because we can come to see it’s just been such a mess for us all in so many ways that can, if we’re not careful, turn us ugly and cruel. We all have a human responsibility to not let our pain give us any imagined license to hurt other people…but often we don’t even realize when we are hurting. In the case of five-year old head…I’m sorry that it got hurt.

    (Note: Yet the world is a beautiful place.)

    I’ve noted and am consistently impressed with your ability to acknowledge the role of the human nervous system in its participation in our states of experience, without giving a slim ounce of credence to the biomedical model. I do not find mind-only explanations of human distress to be much more helpful than biomedical explanations, as I really do suspect that the human experience is affected by our physiological states in ways that we seem strangely reluctant to acknowledge. The aversion to biomedical explanations has put us in the position of avoiding a pretty big part of it all, which is not medical or ill in the slightest, but is simply the way that humans seem, in my mind, to work.

    (By the way, the vital and the spirit are a part of all this, too, but that’s another long comment on another thread.)

    I usually frame the struggling human experience (and also the non-struggling human experience, any human experience really) as a dance between mind/heart/brain and also the body that carries all of this around.

    Stress is a powerful mechanism in shaping our experience. We probably need new words for stress, since people seem to think that it’s the idea of being late for work or a busy calendar. We’ve little collective awareness of the way that stress affects our experience. Stress hormones are no joke.

    Because I tend to think associatively, I’ve made my own sort of sense out the idea that we feel certain things in response to certain staes/impressions/thoughts, and that certain thoughts/states/impressions arise in response to the way we feel…in cases of complex trauma, it seems that a strong, networked associations of image/sound/feeling/impression can be set in relation to specific stress reactions. Thus, whenever a certain characteristic landscape of stress hormones is activated, those networked associations become our dominant experience – due to the fact that stress strongly cues us to things that present threat (real or “imagined”/associated) the reaction becomes self-perpetuating, driving intense states of experienced disorder and manifesting all sorts of unpleasantness.

    I have found that people are comforted with an understanding of the way that feelings/thoughts/images/sounds/smells/
    states of being
    …all exist in accordance with one another and in can act in a rapid-fire sequence of reactions upon reactions that can, it’s true, become quite a frightening jangle.

    In my experience, emotionally stimulated PTSD seems to be helped by emotional “regulation” skills (not to diminish emotionality, but to learn to navigate it in perspective and safely) + meditation to learn the paths to calm safe spaces and an informal process that I sort of think about as experience mapping…basically sorting out where the bells and whistles and alarms are all caught up together and figuring out what sets off the multiball.

    (Yes, I do use pinball analogies in my work as Peer.)

    Thanks for the exchange and I hope you’ve a wonderful night in the big, bad, brightly, beautiful world out there.

  • Off-topic: Thank you, David Bates, for this quote:

    “Curse the mind that mounts the clouds in search of mythical kings and only mystical things, mystical things cry for the soul that will not face the body as an equal place, and I never learned to touch for real down, down where the iguanas feel” _Dory Previn.

    (…and for also writing long comments.)

  • Brief note: The world is a vibrant and beautiful place…so long as you don’t think too hard at baseball games. I choose to imagine/know that inside all those tshirts and under all those ballcaps there are – of course – vastly reeling worlds of wonder, story, and heart, the vital human core.

    In spite of the truth of a strange postmodern (and what is truth in postmodernism?)sci-fi/archaic conflict narrative telling tales of a vast multilateral abusive net of social control and exploitation…well, I’d much rather know that even in the most bleak of settings, somewhere someone is dancing and who the heck knows what might happen yet? Thanks for letting me work that out.

    I’m hopeful. I have a lot of confidence in the vital human spirit…of course, its assertion under duress often makes people appear “psychotic”…but that’s another useless word it seems that folks are in the process of deconstructing to null.

  • Thank you so much for writing with such clarity re: the sudden joy of realizing connection and the struggle that occurs when connection wavers, gets broken. The mental image of a child looking back in the sudden sun to see her family and feel wholly loved and alive…well, it was a gift. Thank you for writing!
    Really beautiful!

    With Appreciation,
    Faith

  • This is a great piece of writing and perspective, Steven and congratulations on the Vt. Soteria project finding its feet. I know a lot of people are hoping that it will be a model that can be used to establish respite/integrative recovery spaces in other areas.

    So, I read this right after I read Dan Fisher’s landmark article/essay/treatise on human connections and relationships as pathways to healing. It seems I ended up getting a bit, um, broad in my response to your solid deconstruction of “mental illness.” It’s all related, like most things.

    Re:
    “I just don’t think that very many modern science guys are going to read past the first paragraph.”

    It is a problem that modern science guys aren’t going to read the last paragraph, or these next few.

    Why is it that we can handle going from no cars a hundred years ago to a world absolutely choked with cars or that we can unquestioningly write these comments onto little screens invented within the last 30 years, and yet we scoff and sneer about how “naive and unrealistic” some people are to think that the world may need to change significantly…?

    How is it that the (relatively recent in the broad scheme of things) biomedical model is so sanctified in spite of the fact that it clearly has no basis in any reality that is good for humans or the world?

    (I think we could all probably answer that pretty easily.)

    Thank you for articulating this in such a straightforward way. I appreciate your acknowledgment that human experience exists on a multifaceted spectrum, with various strengths and attributes, some of which are, apparently, more valued than others.

    Most everyone can agree that the world is, in fact, “crazy.” (per the language of The Icarus Project) However, the craziness of the world and all its dysfunctions is usually only tangentially identified as being related to “disordered” experiences. Meaning that we seem to be doing well to identify the role of societal stressors and cultural/emotional/physical/etc. trauma as being contributing factors in our difficulty within experience, but I’ve not yet seen a lot of common dialogue that captures the distinct possibility that societal dysfunction may actually be causing experiences that are painful, alienating, and socially traumatic.

    I agree, of course, that the term “mental illness” is, for all practical purposes, utterly useless and, further, is actually harmful. Still, people do have a hard time in this world and those difficulties are expressed in all sorts of ways, depending on a person and their unique human struggle.

    It has been my observation that much of the cultural realities of the “modern world,” as it has arisen on the foundation of terribly(dangerously)flawed ideologies and economies, actually do really hurt people.

    For so many, and increasingly so, there simply is no place to be ourselves and live within (or even develop awareness of) our strengths…because, as ordinary people, our strengths are not valued within exclusionary cultures and economies. For many, when the self is expressed in ways that conflict with normative rigidity of function and expectation the person is actually punished, through bullying, exclusion from the economy, violence and pathology.

    Our access to a dynamic experience of humanity in learning and work and family and community has been severely limited by the structure of our ideas, roles, economies and cultures.

    I suppose that some would say that this is a gratuitous point and a moot one at that because, well, what can ya do?

    As much as I am committed (in my work and in my own life) to nurturing true recovery at the individual+community level, I am really invested in figuring out what will support an empowered macrolevel recovery from the unfortunate events and habits of the 20th century.

    I know that seems lofty, but the alternative is some sort of hopeless complacency and an acceptance of things that really are, in my mind, pretty unacceptable.

    What sort of world is it when people are systemically denied viable opportunities/ideas/language to express their unique experience of self and interest and to be respected and loved simply for who they are? That, to me, is bigger than “mental illness.”

    Can you imagine a world in which people are wrought into narrow modes of existence, function, and meaning…diminished and confused in a tragic state of disconnection from themselves and unable to look one another in the eye for more than a moment or two, slowly destroying themselves with sweet and salty distractions and jokes they know they shouldn’t laugh at?

    “Oh, man, that is so wrong!”

    …and then when our minds/hearts/brains struggle to make sense of why it all seems so tragic and empty and frightening and difficult and pointless to the extent that we get all sorts of turned around and twisted up and stuck…well, somehow it is an “illness” that we have? It is our problem? That is a classic example of shifting blame. That sort of thing is seen at the microlevel in emotionally and psychologically abusive relationships.

    It is so overwhelming to think about, how one deeply erroneous phrase (“mentally ill”) can indicate a problem that is much more far reaching and which, ultimately, affects us all.

    The other night, at a baseball game, I was looking around the crowd and I was wondering what the people might be like if they weren’t 21st century Americans wearing jeans and t-shirts and eating chili fries, watching a field. A lot of people didn’t seem to be having much fun. They were just there. By my estimation, many of them were on psychiatric medication.

    These shifts in language and practice are so important to the world.

  • Much, much appreciation and respect. I’m so glad you’re writing here, Ted! Your heart is amazing and the world has much to learn from it.

    I found myself leaving you a note in a comment on a fb post made re: a book on electroshock and children and figured I’d just put it here:

    “:( Just the words “electroshock and children” make me tearful. Ted C. – if you happen to come across this comment, please know that you and your young friends remembered are in my heart right.this.very.minute.”

  • Hi Dr. Fancher – I really appreciate 3 things about this comment thread:

    1) You were relatively tolerant of naive oversimplifications (which a particular specialty of mine)

    …and these statements:

    2)I would point out that everyone who makes a living providing mental health care is working “for profit.”

    3) Most people cannot live with the cognitive dissonance and moral queasiness of knowingly misrepresenting their work for money. Most people come to believe (that what?) they say (is true?)

    Did I say 3, I meant 4: “The American Psychological Association and the National Association of Social Workers, for instance, engage in significant lobbying and PR to make sure that their constituents get their piece of the medical pie.”

    I wonder what will be discussed at the APsychiatricA w/APsychologicalA convention in Oct?

    This post really contributed to my understanding of the forces that direct state-funded systems. Other than wait for the dysfunctional system to destroy itself with the burden of cost it has created, what can be done to minimize harm to people seeking help and prevent opportunistic fraud? There’s no need to answer, but I’ve been trying to spot a feasible/achievable solution and there does not appear to be one…unless states shift funding to models that show higher efficacy re: cost/benefit?

    It’s going to be a mess when it collapses, isn’t it?

  • Yes, not black nor white nor grey. In fact, I’d say it’s a bit of a worrisome jumble, with no clear fidelity to practice from organization to organization, or even from Peer to Peer. I try to use my position to present ideas to people who might not otherwise have access to them, because just like bad ideas can wreck a life, good ideas can heal. However, the idea of working within a state-funding structure that also foots the bill for ECT, well…it’s pretty repulsive to me.

    Still, if all the people with integrity refuse to work in the systems, then the people that seek services within the systems will be more likely to be harmed?

    No, I’m not a martyr. After all, I do make a whole 10 and half dollars per hour! With no insurance! :/

    Gee, maybe I am a martyr…

    Always, it comes back to that core question…how to change the system, how to change the system?

    I hope you enjoy your day. Seems the sun will be rising there soon. I’d best call it a night.

    With Appreciation,
    Faith

  • Sure, Ken. I’m really trying to work on my relationship with ideas and practice re: my involvement in an outbranch of a system that I do not believe in and do not support. It’s tough. By the time I got finished thinking about all this last night, I didn’t like my letters anymore. I mean, why should I be proud to have earned the approval of the state of NC? Give me a break. I don’t need their approval…except I do if I want to work in settings where poor and vulnerable people seek help.* Someone once asked me if I’d still work at my job if I weren’t getting paid and in complete honesty I told them I’d much rather do the work I do for free.

    *I also do mutual aid/peer support at a grassroots community safe space and hold Mindful Occupation gatherings in the backrooms of coffeehouses. I have this weird duality of working-in-the-system while at the same time working to undermine the system. Some days it feels brilliant and brave, other days it just feels confusing and dissonant. Such is life, I suppose. Thanks for offering passive peer support here, by holding a space for people to reflect and share ideas on what is what and how it affects our thinking about Peers and just being real.

  • ‘Perhaps world peace can progress with a simple, “I’m sorry for being such a jerk.”’

    I don’t know what this is in reference to, but as someone who is still learning, too, I appreciated it.

    I just stopped by here to make note of someone through Icarus who is interested in forming some digital/local (true) peer support networks specific to coming off of psych meds. http://theicarusproject.net/forums/viewtopic.php?f=60&t=27464

    Have a good night!

  • Sorry about the double post…not sure how that happened or that it was even possible to post the same thing twice on MiA. If someone wouldn’t mind deleting some of all this…? Thanks! Why can’t we delete our own comments on MiA?

  • Wow! What an inspiring blog post!

    I’m definitely going to check out the http://www.surveymonkey.com/s/KQRCJ5X re: underground railroads. I have had some haphazardly earnest experiences trying to help a few friends and familiars get out of psychiatric abuse situations. Supporting people trying to break free or start over is really powerful, but the crossroads can be a tricky place.
    Amazing to see people strategizing the underground railroad. That is a visionary and much needed network. Best of luck in pushing the project forward in the coming days.

    In the meantime, I’d love to spend some time structuring ideas about these topics you presented, not necessarily all of them, and not necessarily even to the point of a coherent completed piece of writing, though that would be nice. Still, I’d not want my interest to discourage anyone else from writing on/thinking about these topics.

    The Peer issue is a tricky one for me right now, as I am very conscientious and deeply service and integrity oriented. Yet, the organization I work for as a Peer does have elements of medical model practice…none of which I am involved in, of which I am vocally critical, and which in practice I directly challenge by speaking with people about how to effectively self-advocate around issues of reducing/coming-off medication or accessing resources and ideas that erode the illness worldview and other harmful and unhelpful notions of who we are and what our experience entails. So, while I feel somewhat stealthy and valiant on the one hand, to be facilitating liberated and proactive recovery in a community mental health center…on the other hand, I feel a lot of cognitive dissonance for participating in a system that I really wish didn’t exist at all. I wish the whole state-funded mental health system would just turn itself inside out and give money to local groups creating programs that reinforce and build on the strength of communities and families in ways that nurture sustainable networks of vital support, activity and meaning. Maybe they could pull some money out of the hospital coffers and fund arts and culture and wellness opportunities for meaningful participation in community? I make a lot of wishes about the way I wish the world were. Wishful thinking is, I have begun to realize, a wellness tool for me.

    The questions about SAMHSA are good ones. People know what works and they know it costs less to support people being well than it does to support them being ill. Obviously, the systems have interests other than recovery.

    I’m really fairly confused about my role as something of a radical humanist who facilitates self-directed recovery under the guise of state-funded recovery education and, right now, that muddies my clear consideration of anything Peer/System-related, though the question re: life situational/medical is a good one. Though it is obvious to me that anything of the mind and heart is a non-medical issue, it seems that psychiatry is, again, tragically confused about human beings.

    It’d be a fun little writing exercise to explore these topics. If I come up with anything worth refining and expanding – I’ll refine and expand it and share it with you via MiA message. Thank you again for the inspiration.

    ***
    Have psych meds ever stopped you from processing grief in some way? Or stopped your development so you are socially or mentally too young?

    Why people need to be active in their community, why they aren’t, how they can find cheap or free events to do – how to make friends. What to do to overcome “not being able to pass” for a chronically normal person if that’s what’s keeping people isolated.

    Peer support is not medical help, it is life situational help because “mental illness” is not a disease, it’s emotional distress. So why do some doctors keep insisting that peer support IS medical help? What is medical and what is life situational?

  • Wow! What an inspiring blog post!

    I’m definitely going to check out the http://www.surveymonkey.com/s/KQRCJ5X re: underground railroads. I have had some haphazardly earnest experiences trying to help a few friends and familiars get out of psychiatric abuse situations. Supporting people trying to break free or start over is really powerful, but the crossroads can be a tricky place.
    Amazing to see people strategizing the underground railroad. That is a visionary and much needed network. Best of luck in pushing the project forward in the coming days.

    In the meantime, I’d love to spend some time structuring ideas about these topics you presented, not necessarily all of them, and not necessarily even to the point of a coherent completed piece of writing, though that would be nice. Still, I’d not want my interest to discourage anyone else from writing on/thinking about these topics.

    The Peer issue is a tricky one for me right now, as I am very conscientious and deeply service and integrity oriented. Yet, the organization I work for as a Peer does have elements of medical model practice…none of which I am involved in, of which I am vocally critical, and which in practice I directly challenge by speaking with people about how to effectively self-advocate around issues of reducing/coming-off medication or accessing resources and ideas that erode the illness worldview and other harmful and unhelpful notions of who we are and what our experience entails. So, while I feel somewhat stealthy and valiant on the one hand, to be facilitating liberated and proactive recovery in a community mental health center…on the other hand, I feel a lot of cognitive dissonance for participating in a system that I really wish didn’t exist at all. I wish the whole state-funded mental health system would just turn itself inside out and give money to local groups creating programs that reinforce and build on the strength of communities and families in ways that nurture sustainable networks of vital support, activity and meaning. Maybe they could pull some money out of the hospital coffers and fund arts and culture and wellness opportunities for meaningful participation in community? I make a lot of wishes about the way I wish the world were. It is, I have begun to realize, a wellness tool for me.

    Your questions about SAMHSA are good. People know what works and they know it costs less to support people being well than it does to support them being ill. Obviously, the systems have interests other than recovery.

    I’m really fairly confused about my role as something of a radical humanist who facilitates self-directed recovery under the guise of state-funded recovery education and, right now, that muddies my clear consideration of anything Peer/System-related, though the question re: life situational/medical is a good one. Though it is obvious to me that anything of the mind and heart is a non-medical issue, it seems that psychiatry is, again, tragically confused about human beings.

    It’d be a fun little writing exercise to explore these topics. If I come up with anything worth refining and expanding – I’ll refine and expand it and share it with you via MiA message. Thank you again for the inspiration.

    ***
    Have psych meds ever stopped you from processing grief in some way? Or stopped your development so you are socially or mentally too young?

    Why people need to be active in their community, why they aren’t, how they can find cheap or free events to do – how to make friends. What to do to overcome “not being able to pass” for a chronically normal person if that’s what’s keeping people isolated.

    Peer support is not medical help, it is life situational help because “mental illness” is not a disease, it’s emotional distress. So why do some doctors keep insisting that peer support IS medical help? What is medical and what is life situational?

  • Note, written with pro-Peer bias that is hopefully balanced by the reality that most state-funded centers provide poor and harmful medical model care and people within those systems do not support recovery if they participate in a way that is necessarily complicit with harm.

    Hmmm, this is interesting, as just last night I was writing about how Peer Support can actually challenges the formal system. Of course, I was also writing about a kitten named Mr. Feelings and so, really, I’m not a strong adherent to any blanket statements, other than that Mr. Feelings is a pretty lousy name for a cat.

    I think of the current landscape and continuum of services and practice as being very much in a strange juxtaposed limbo between the coercive medical model and the empowered recovery model. It’s interesting to see all the different forms that roles and experience take in different context. However, as interesting as it is, there is some urgency in trying to prevent any more people being harmed by terrible ideas like mental illness and antipsychotics. Which are actively harming people right now.

    Clearly the system challenges Peer Support. My thinking is that you’re absolutely correct in that medical model care directly conflicts with what I believe to be the ethos of peer support, which grows from mutual aid traditions. I think that in many instances Peers are used in a way that undermines recovery and that, often, recovery is just a word that is tossed around because it looks good on brochures.

    Then again, in some settings that receive state-funding, Peers are encouraged to participate in people’s recoveries in ways that hold a high-caliber of direct humanity. I facilitate recovery education classes and even in the role of the person at the front of the room, the dynamic is mutual and responsive and co-learning is acknowledged and celebrated. In keeping with the principles of WRAP I do not refer to people in clinical terms and I support them in advocating with other providers within the organization, such as the psychiatric nurse practitioner that I sometimes share an office with. Yes, it is not an ideal scenario.

    At some point, I’d like to work in a Peer Respite center. However, I cannot deny the value of having Peers participating in the state-funded mental health system, even if the fidelity to the ethos of Peer Support is often compromised by the culture and practice within state-funded mental health centers. The core of the work that I do is helping people transition their ideas about illness and wellness and encouraging them to be self-directed in considering what is helpful to them and what is harmful to them, what they are hopeful for within their lives.

    I understand that the organization I work for, and the particular center that I work for, is somewhat rare in provisioning the role of recovery educators to Peers within a setting that maintains clinical elements so that they are able to offer support to people who may not have access to any services at all if it weren’t for state-funding…in some cases, depending on what services are available, no services might be better than bad services. Of course, with communities strained and people really struggling, sometimes it seems like people just like to have somewhere to go that they believe might help them to feel better. Sad that people receive help that is actually unhelpful and that so often they are harmed under the auspices of care.

    Within the curricula we work from, people learn skills to help them to rebuild the support networks that were damaged in the course of circumstance and experience. Just today, I made copies of a S. Mead essay on Peer Support to use in WRAP next week. One of our experienced students has been discussing recovery skills with some of the people that live in the poorest neighborhoods in the semi-rural county. Thus, true peer support – such as that which occurs between neighbors and friends – is empowered.

    While I wish that our publicly funded systems were managed by Peers and employed only Peers and let Peers make all the decisions about how they wanted to run services and how they wanted to participate in them…well, that isn’t the case.

    There is a fellow in Vermont who is opening a respite house that is based on Soteria and yet will include a psychiatrist and draw state-funding. The psychiatrist is for the purpose of helping people practice harm-reduction in coming off of medication and to support people who choose to use medication as a conscientious tool.

    It’s not Peer Support in true form…but, it’s much better than nothing. Recovery education is vital as it helps people learn how to manage their experiences in a way that reduces crises. Of course, these same skills can be learned in community and in families, but many communities and families are not meeting people’s needs either, due to compounded challenges, such as joblessness, substance use, and the general hard time that a lot of people have been going through these past, oh, several thousand years.

    It was disheartening to see that some Peers advocate for medication usage, as advocating for any specific treatment is itself in conflict with the boundaries of power and presumption that support mutuality between Peers and also undermines “Be the Expert on Yourself.” I’m sure that medical model settings are padding themselves with complicit and brainwashed Peers who just want some job and might be a little inclined to enjoy having the power of influence and to abuse the privilege of trust…because some people are opportunistic and unethical.

    By the way, I like the letters behind my name. To me they signify scraping myself away from a death’s door state of complex disorder to apply for a job that, at that point, was probably the only job I could have gotten. Suddenly all the things that precipitated the gaps in my resume were something that could get me an interview. Additionally, the letters represent specific training and experience as an entry-level professional. I’m proud of that and it seems peculiar that Peers would tell other people what they should or shan’t be proud of. In content, the training actually supported the perspectives I gleaned from the radical mental health movement and made me really hopeful that perhaps things may be changing, bit by bit. The clinical director of the organization actually taught me the word iatrogenic, in a discussion on stigma and where it comes from.

  • Hi Sascha – Thanks for writing at such length about the overlay of ideas, the maps and the territories. I must note that this is the 3rd time this week that Theseus/Ariadne/Minos/labyrinths have come up.

    That being said, my thoughts are a little turn-around and dead-end this evening. Tangled up in threads. Still, thanks.

    I appreciate this:
    “I’m well acquainted with feeling like I’m the one stepping out of Plato’s cave and telling everyone they’re just watching the shadows on the wall. That’s a lonely place to be.”

    ***

    Seems to me that notions about mental health are a natural gateway to inquiry about the human condition in context and with ample opportunity to build narrative awareness at a personal and conceptual level. Ooooh, micro/macro narrative studies.

    The trials and tribulation and triumphs of madness make for lovely allegory, too.

    ***

    As part of my job, I spent about 6 months facilitating general Positive Psych. classes/discussions for adults in recovery and, I tell ya, nothing seems to heal a bad idea (hopelessness, anomie, fear) like perspectives that support good ideas (gratitude, strengths-awareness, opportunity for meaning) and these practices don’t even have to be called anything or even be “about” anything other than an exploration of conscientious human living and self-directed participation in one’s life and interpretation of experience.

    ***

    I used to really resent some factions of the counter-community for laying cultural claim to truths that, really, are about us all and making relatively simple ideas about human worth, dignity, and function out to be esoteric or radical. I like thinking about ways to make liberation a reasonable and accessible goal for all humans. This is sort of a reversal of the co-optation call-out, I guess.

    ***

    I think that your (de)delineation instinct is a good one re: a generalized human potential movement rather than a parsed movement that promotes the liberation of a single culturally identified group. I have realized more and more that what it is that I’ve been recovering is my sense of what it means to be human. Not human with a mental health disorder, and not human without a mental health disorder, but human as a member of a species that existed long before mental health disorders were even invented, a member of a confused species in a beautiful world that has gotten terribly bungled by character and word and bad ideas about what it means to be human.

    ***

    You want to hear something sort of sad? So, I joke about this a lot, but it was actually pretty serious. In the middle of my biggest undoing, I really did try to get in touch with people whom I, at the time, imagined might have the power to step up and make some sort of big announcement, “Ladies and Gentlemen, we regret to inform you that the past several hundred years have been a tragic mistake. We understand that systems of profit and power have been systematically manipulating and oppressing human societies. We’ve really screwed up and we’re sorry. Things are going to change around here. They have to. It’s the right thing to do. There are a few things you need to know about human beings and the world…”

    Isn’t that an absurd hope?

    ***

    I spend so much of life taking apart ideas and playing with perspective, looking at what works and what doesn’t and how it might, measuring efficacy and effect. I cry about it, I laugh about it and then I try again to mind-craft strategy for a unifying thread, some reparative/restorative truth that maybe we all could reckon with, something that no one can argue against. Peace? Oh, yeah, they tried that already…

    Tonight, I’m tired and I really just wish the “bad guys” would be the good guys for once in history.

    ***
    Quickly Re: History

    They laid their hands on the soil
    and they watched the winds
    whip the cape
    and the world was still a wild place
    that we lived in

    A stake here, a stake there,
    a mistake a mistake a mistake.
    This is history.
    We wrote it
    to be ours for the taking
    and the making.

    We gave it shape in technicolor
    handed down from folds of the robes
    above
    behind dark wood
    in the light of colored glass
    and in the form of flesh
    made with soft wheat
    and wine that is simply wine.

    A spectacle here, a spectacle there.

    It’s all so very magic and yet it’s not.

    We were one thing
    and then we became something else.

    ***

    Thanks, again…

  • WAY TO GO NEW YORK!

    RALLY & DEMONSTRATION
    Join us!

    AUGUST 9, 2012 – 12:30 – 3:30 PM

    ALBANY NY – WEST CAPITOL LAWN – SWAN STREET STEPS

    STOP – NYS TAX DOLLARS SUPPORTING TORTURE OF CHILDREN

    NO MORE “SHIPPING” NYS YOUNG PEOPLE TO THE JUDGE ROTENBERG CENTER

    NO SHOCK !

    NO RESTRAINTS NO SECLUSION !

    Take Action to Pass New York State Legislative Bills S6294A-2011 and A9084A-2011
    The bill would revise the social services law to prohibit any form of public funding to any school or program that uses
    aversive interventions, specifically naming contingent electric shock. Call on your Legislators and Governor Cuomo to STOP the flow of NYS taxpayer dollars to support torture. Let’s push the Bills for Next Session.

    The JRC uses what they call ‘aversives’, including painful shocks to control behavior. While the school describes each shock as feeling like a “bee sting,” one MA legislator described it as “Just unbearable …I felt like I was being electrocuted.” View clips of a news anchor testing the shock device on herself at occupyjrc.org.

    In addition to shock, JRC has also made extensive use of other ‘aversives’, including significant denial of food, forced inhalation of ammonia, “white noise helmets,” and brutal restraint techniques.

    JRC has been cited many times over the years for deaths due to extreme medical negligence, misuse of ‘aversives’, and restraint, injuries from burns sustained as the result of shock are common.

    The United Nations Special Rapporteur on Torture has officially declared JRC’s actions to be TORTURE.

    ORGANIZERS

    OCCUPY JRC – VOICES OF THE HEART – YOUTH POWER!

  • So, we need a total overhaul of our entire insurance, policy, and funding systems? Thanks for writing on the origins and effects of profit/policy collusion. Very tricky.

    In the case of Medicaid and Medicare, it’s a shame that states must pay such exorbitant rates for services such as hospitalizations and costly medications that measurably fail to promote wellness, especially when models such as Peer Respite cost less and offer better outcomes for “consumers.”

    Ha! Here’s an excerpt of a letter I wrote (on a particularly broad-minded and enthusiastic day a few months ago)to our state-level lobbying Coalition re: MHDDSA services here in NC. All they had to say in return was, “We’re doing this…we’re doing that…we’ve done a lot.” I certainly wasn’t suggesting that they hadn’t. However, it seems that more could be done.

    “…I understand what is so deeply wrong with our mental health system and I believe that, working together at every level, we can establish a system of care that truly supports the recovery of both consumers and the system itself.

    “We can not fix it. It is too complicated. We can stitch it, but you’ll have a scar. We can medicate it, but you’ll have some serious side effects. You’ll need to do this. You’ll have to do that. There is nothing you can do. Sign here and come back next week.”

    This is what coercive profit-driven medical model psychiatry taught me about my potential to recover, that there was no better way. They taught me, in fact, that attempting a better way would, in fact, be a risk. They taught me that I could not manage myself to best meet my needs and that further, I was not even able to identify what my needs may be.

    Just as people who profited from my disorder and denied me my rights in doing so (the right to refuse and the right to be informed), I see that the MHDDSA system in the state of NC is also being coerced. In very real ways, North Carolina is being denied the right to manage MHDDSA systems in ways that actually work for us and meet the unique needs of our communities and the individuals within them.

    Lobbyists and profit-interest groups have coerced North Carolina into what is, by and large, a narrow and dysfunctional model of care that actually creates more problems than it solves.

    There are evidence-based and cost-effective modalities that support proven and measurable recovery. Recovery Education Centers are Peer Respite are just two examples.

    Why is it that these proven alternatives to medical model services are not more broadly funded?

    The reason that our MHDDSA system is struggling is this: Interest groups, such as those from the Pharmaceutical and Insurance industries, are profiting.

    This is not a political issue. This is an economic issue.

    However, it is also a human rights issue. We see every day that people’s needs are not being met, or worse, are needs are being responded to in ways that measurably violate their rights as patients and consumers and cause further harm.

    The state of NC is paying a lot of money for people to have no option other than to go to the hospital, no option other than to take the expensive medication, no option but to get the ECT treatment.

    For far less money, Recovery Education and Peer Respite could bring true recovery to North Carolinians and yet these services are being made inaccessible due to manipulation of funding structures.

    Recovery is possible. I live it every day and I see it all around me. However, it is only possible within a system and a culture that supports the reclamation of the worth of our lives and potential to live them well. A system of care that profits mightily from “illness” requiring costly care is not likely to support true recovery. There is ample evidence that the traumatic effects of some medical model practice actually cause great harm to people.

    I believe we can do better than that.

    However, in order to do so we must stand up to those that lead us to believe that this is the best we can do.

    Please do encourage advocacy for Local Management, Recovery Education, and Peer Respite Crisis Alternatives.

    Thank you for your time in considering this vital issue that, in some way or another, affects all North Carolinians.

    Sincerely,

    Faith Rhyne, CPSS

  • What a great post Becky! Do you have any ideas about how we – the conscientious community – could collectively build awareness of this issue among those who are working directly with children in public systems of care? We are all outraged, and rightfully so. Are there any “leaders” in policy and legislation that are working on a public awareness campaign and ways to hold doctors who promote iatrogenic illness accountable? I know you, Becky, are very informed – as are many others. Why is it that so many people know that the practice of medicating children is wrong, criminal, and yet we don’t see a major public outcry. I know that there are issues of media-dampening and the obvious impact of BigPharma and pro-force-for-profit lobbying…

    What can we do?

  • Ted, I’m sorry your mother was “crazy.” Sometimes people really do “go crazy” and it’s terrible when things get to that point. Fortunately, even people who “go crazy” can often come back if given a chance. ~ I’m deeply sorry, with respect, for those who didn’t/don’t get that chance.

    I’m posting my comment from the Stop Psychiatric Drugging of Children page over on facebook here, too. As it is relevant and, given that I once had to tell my kids, “If anyone ever says your Mom is crazy…just tell them that she loves you.” (Okay, I admit it, I also said “…just tell them she’s a genius and they might not understand.”)

    At any rate, here’s the repost of my – a person with a Bipolar 1 diagnosis who has a kid who was once diagnosed with an Autistic Spectrum Disorder – thoughts on the subject. I added a couple words, just for clarification.

    “Sorry this was long. I know I’m bad about that. This is something I actually think a lot about and it’s important to me because these are ideas that affect me and affect my children – as well as a lot of other kids. Thanks for letting me put my thoughts here.

    Please recognize that the following hypothetical musings are not in support of or endorsement of the biomedical model. That being said, it is worth acknowledging that many people do identify as neurodivergent on various spectrums. There are a lot of people who do think that their brains work differently, and that that is not necessarily a bad thing. There are striking similarities in self-reported modes of experience of people that carry certain diagnoses. Of course, this could be the result of integrating diagnostic criteria into your personhood ~ though usually the similarities I note with people in my “diagnostic family” have little to do with DSM criteria, they are more like the ways that we are a little out of step, a little behind, a little too far ahead, way over in left field, distracted by some little noise or big bright idea.

    What if whatever processing/sensory/expressive/interpretative tendencies that create experiences that may be a bit outside of the bell…well, what if there really are some differences? What if my differences are, in fact, my human strengths but because of increased “stress vulnerability” (due to the sheer volume of sensory input alone) I am prone to becoming overloaded with “stress hormones” (there’s your lousy “chemical imbalance”) that then create a chaotic and disordered/out-of-whack/under-pressure experience that can then become easily compounded with additional stressors, weakening my ability to manage my experience in such a way that things perceived as symptoms begin to arise? This is my understanding of my own experience.

    So, since I’ve already written too much, and I do apologize for that…have I ever told you my theory that “schizophrenia” is actually based in sensory processing and meaning integration, some process akin to synesthesia, which is also a made up word, but one that is less progressively malignant than “schizophrenia.” ? http://en.wikipedia.org/wiki/Synesthesia (…from the ancient Greek σύν, “together,” and αἴσθησις, “sensation,” is a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.)

    My angle on the tragedy of the mother~child “illness” is that my own children would hit criteria and my “diagnosis” would be a mark on the chart they.will.never.have That’s part of the reason I am so strident about taking apart these horrible ideas that wreck our whole understanding of what it means to be human. My son – in his own way – processes information similarly to me. He is a wonderful child who, if he ever went to a psychiatrist, would walk away with a diagnosis and a prescription…and he’s just a regular smart, sensitive, sweet, day-dreamy kid who notices and feels a lot, has some pretty intense states of being. My daughter is a high-spirited fireworks sort that doesn’t abide by sitting still and she has a brilliant mind for abstraction and finding lost things. She has only worn socks about 20 times in her entire 7 years. (We have a lot of talks about self-regulation skills and what to do if “upset.”)

    So, what if people who are a little “on the sensitive side” – if traumatized, develop a stressed network of associations that create powerful cognitive/emotional/whole-self experiences ~ as stress affects our (humans) entire body system in ways that create distressed experiences? The issue, so far as I’m concerned, is less about proving that there is no difference, and more about honoring the worth of human diversity and the beauty of human experience ~ recognizing the value of the “atypical” mind as a vital force in human cultures and societies…also, establishing accurate etiology is important in treating any disorder in society. I’d say any society that puts a 5 year old on Seroquel has some pretty serious problems.

    Thanks and with respect.

  • “Teaching lovingly assertiveness,self respect and self-control is probably the answer here-certainly not drugs

    Of course, this is not in the interest of medical model+pharmapsychiatrists, who profit from progressive and disabling “illness.” The diagnoses themselves are stigma-structured in such a way that people are basically presumed to not “be able to manage themselves” ~ seen as “out of control.” This deleterious perception often supports people’s control being taken away from them, the effects of which can be devastating.

    Ah, minor correction re: the writing above “…kids with IED and Oppositional Defiant/Conduct Disorder” should read “kids with (…) DIAGNOSES” ~ there is no disorder other than the poor perceptions of traumatized brains/lives further disrupted by pharmacology and the troubles caused by coercive and inhumane care.

  • Hmmm, sort of awkward, with this being the only comment and all. Oh, well…

    It seems lots of folks with lengthy histories spend a few years fighting explosions, which are often brought about by pharmacology and stress+trauma and loss/grief. I think it is important that we talk about what self/world destructive violence means in humans and particularly in youth, what it indicates and what can be done to help.

    I was, for a period of about 10 years, intermittently explosive to a fairly severe extent during my Prozac-adolescence. I had extreme emotional intensity and sense/stress vulnerability to begin with. Add a few years of deep and traumatizing insults and threats and…well, yeah, kids explode. The teenage brain isn’t even fully developed. The prefrontal cortex, in particular, isn’t even fully wired for another ten years or so.

    Is it a good idea to add powerful psychopharmaceuticals to tumultuous neurology-in-development? Probably not.
    They don’t even know how the drugs work. For example,I was floored when I looked at the risperdal website and it proclaimed: “The symptoms of Bipolar I Disorder and schizophrenia are thought to be caused by chemical imbalances in the brain. Although it is unclear exactly how RISPERDAL® CONSTA® works, it seems to help balance the chemicals in the brain.” http://www.risperdalconsta.com/about-risperdal-consta/how-does-risperdal-consta-work It’s right there on the website.

    It seems like the kids with IED and Oppositional Defiant/Conduct Disorder often end up on atypical antipsychotics nowadays. Frequently, where they came from are some fairly horrible experiences that they have every right to be angry about.

    A few years ago, I was a volunteer advocate for Guardian ad Litem. The kids I worked with were, specifically, adolescents in state custody that were in “Leveled” homes ~ therapeutic foster care to long-term “residential treatment.” They were all on put on Geodon. Though some were able to get off by explaining that it made it difficult for them to stay awake in school, which was true, and that this created “more problems” for them, also true.

    Anyway, I don’t talk about the explosive years much. They are a challenge to me. Even as skilled as I am at finding something salvageable in unfortunate events, it’s tough to figure out what might have been good about being so powerfully enraged that I literally broke my own bones in desperate fits of wanting to destroy something to the extent that I terrified myself, which fueled the fits even more…

    Oh, maybe that’s the good to come of it…now I can learn more and teach more about the processes that drive explosive human rage/grief/frustration destructo-nihilistics and maybe one day we’ll stop giving kids drugs that make them want to hurt people they love and themselves and the whole world. It is the worst feeling I have ever felt, what I felt as a fifteen year old on Prozac. I thought it was me. That was the worst of it, I thought it was me.

    Thanks for holding this community space where people can share science and story and perspective on what we are healing from.

  • Thank you, as always, for this, Michael. It may be reasonable to consider the role of our REACTIONS to heightened emotive states and the effects of stress hormones in affecting our processing of emotional experiences, and thus the direction that they may take. It seems that many are not equipped (due to paucity of cultural information or understanding in regard to vital emotionality) to conceptualize the emotive process as something natural, normal, and healthy. Further, trauma can create emotional associations that are fraught with shame, fear, avoidance, and resistance.

    I appreciate this sentence, “How I grieve for those whose madness processes were aborted before that healing, emotion fueled transformation could fully run its course.” In honoring those whose paths to fully realized self have been (often brutally) abrupted, I try to remember all those that are transforming right now (even as I write this) and all those who have yet to face their own emotional gauntlets, but who someday will. I hope they find, within themselves and within the world, whatever it is that they need to support them in their own unique emotive process.

    …and, yes, I do believe that anti-psychotics are designed/intended to blunt our emotional experiences, which seems to me to be a violation of our most basic human right…to feel what it is that we feel…

    Great topic and dialogue. I appreciate David’s provision of info./perspective on the workings of the brain as they pertain to the workings of the heart and mind. Hope everyone has great day, thinking and feeling in the world.

  • Thanks so much for speaking so honestly and articulately about your experiences. It seems like so many people are coming forward with stories such as these, with coworkers as archangels and a driving tension between a sense Good and Bad. This issue has come up all over the place lately. Which is wonderful, because if there is any creedence to collective consciousness, that means people are beginning to reconsider a few assumptions about “psychosis” and are re-evaluating their stories with new perspective.

    I am also a Peer that is in recovery from things associated with a crisis of spirit and meaning and context (simulacra)that manifested as “psychosis”* and it is a strange sort of disreality to begin to realize how many people seem to go through this very real process. Thank you so much for stepping up with your story.

    Everything we have been taught by the medical model of psychiatry tells us to just shut it down, it’s not real, shut it down, it’s not real. However, there is increasing evidence that it is quite real and those of us who have traversed our understanding of the world so thoroughly that the world becomes something else entirely…wondrous, fascinating, frightening, tragic, and crystal clear…well, it all certainly seems quite real at the time. I think that if someone experiences something strongly in their mind and heart, it must surely be quite real. As with any process, if one experiences trauma or abruption in the process, well…things remain unresolved, and sometimes additional problems can be spurned by that alone.

    I feel incredibly lucky to get to see and be a part of intelligent, honest, creative communication about the intersection between spirituality, meaning and story in madness. Still, I constantly think about all the people that – right this very minute – have no context for their experience other than “It’s not normal. It’s sick. You have to take this chemical to be okay.” Oh, that outrages me, to think about how many people are chemically bludgeoned into feeling *nothing* because nobody knows how to or cares how to help them to make sense of/navigate their experience in a way that works for them.

    I’ve done a lot of writing on this, given that I (somewhat foolishly) blogged a lot of my experience as it was occurring and then had to try to explain it to myself. As a Peer who is also interested in pushing for a dramatic rethink of psychosis, I’ve gotten very interested in the role of narrative, language, and story in self-directed processing of our experience.

    *Instead of psychosis, I’ve been using the phrase “a crisis of reckoning” lately. We need some new words. “Psychosis” says very little about what is happening. It says only that it is not okay. Which is, in itself, not okay.

    Reckoning:
    The action or process of calculating or estimating something: “last year was not, by any reckoning, a good one”.
    A person’s view, opinion, or judgment.
    c : calculation of a ship’s position

    So, I don’t usually dedicate songs to people in comments on science-oriented websites, but this one just came on pandora and it’s a good one. “It comes and goes in waves.”

    http://www.youtube.com/watch?v=pEFxfVyz4Uc

    Keep us posted on your work around compassionate navigation of psychosis. We are changing the dialogue. I’m so glad that you told your story. High five!

    By the way, I think you’re spot on in regard to archetypes.