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.
This morning, I was searching the phrase “narrative recovery” and Google threw my own words back at me.
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.
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.
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.
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.”
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.
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…
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.
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
“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?
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.
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!
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.
Hey, Corinna – Sorry if in the auto-email notification of the above post your name was spelled incorrectly.
I tend to think that it is 2 r’s, rather than 2 n’s and so I mess it up. Now that I have made this statement, I will never bungle the spelling again.
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…
…now that’s inspiring.
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.”
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.
oh, it was yesterday that all that happened.
also, I wish there were volunteer consultants to assist with advocacy efforts.
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!
🙂 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.
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.”
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.
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.
(…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?
(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.
There’s a lot I want to respond to in these comments…good stuff, crucial perspectives. However, I am about to take my young ‘uns and the little dog down to a big rally downtown.
…so glad you all are out there. I’ll come back to these comments in a bit.
In Solidarity, keepin’ on with it,
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?
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.
“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.
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.
“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.
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.
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.”
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,
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.
“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…”
“…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:
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.
“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.”
…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.
…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.
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.
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.
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
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.
My thanks to Eric Parens PhD, and to Vikki Stefans, MD, for their collegial assistance with aspects of this essay.
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.
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.
“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!
Ahem, excuse me…belieVE.
“I decided to take the very best ideas that I uncovered in my reading, and to not just belief in them, but actually apply them in my life.”
– LRF, @1:10 or so.
Beautiful talk. Very inspiring. Thank you.
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.
“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, and cognitive changes such as delirium, and is associated with elevated plasma creatine phosphokinase. 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.
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.
Thanks for posting these “Care Clusters” – fascinating alternative, but I can still sort of see how there would be some, ahem, issues.
In the meantime, this cracked me up: “I’d like to submit for Cluster 9 – kellogs Crunchy Nut Cluster…”
Yeah, I’m stoked that Batesy came back! I was really happy to see his thoughts here.
Thank you, Duane, for liking the poem. That means a lot to me. I felt a lot when I was writing it, picturing it all.
I hope you have a good night and thanks for being out there.
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?
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.
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!
Hey, Layla and Laura – Thanks for sharing this dialogue with one another here. I’ve really appreciated all that both of you have to say, the different perspectives and common points.
“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.
“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.
“Understanding our relationship to EVERYTHING in our environment and our bodies, what we’re born with and how it’s all connected.”
Thanks for everything, Monica!
“…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!
Thanks so much, Jen! I appreciate you being around here for a bit. I’ll see you around this good mountain town!
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. Headquartered in McLean, unincorporated Fairfax County, Virginia, US, 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).
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.
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…