outside mental health
by Will Hall
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reading via free download..
Will Hall (@willhall) tweeted at 4:55 AM – 9 Nov 2017 :
Early antidote to holiday spending? Free download of Outside Mental Health: Voices and Visions of Madness book by @willhall, with 60+ interviews! https://t.co/26i2VcfdnW https://t.co/LYe9KeeNEU (http://twitter.com/willhall/status/928591987456004096?s=17)
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notes/quotes:
loc 102
i was trying to say something, but i didn’t know what it was…t
loc 115
what if my ‘catatonia’ was a way to protect myself, not just a proof of a diseased brain
what does it mean to be told you have a ‘thought disorder’ in a world that is so disordered by violence, consumerism and fear? t
loc 128
diagnosis of incurable mental illness is not something you just leave behind when hospital discharges you.. as i began to ask questions, i realized i had to regain trust, not just in other people, but in my own mind..
that’s bs..screwing w us.. part of our sick society.. thinking we have to earn things.. rather.. let’s try equity: everyone getting a go.. a do-over.. every day.. w nothing to prove..
loc 140
interviewed more than 150 people..described how, like i was, they were abused in the name of care..t.. even as they also soared to extraordinary spiritual and creative heights…
journalists helped me understand big pharma’s corruption of science in the name of profits…
i taught myself to listen for messages and purpose in what were labeled my delusions, paranoia, and voices..
with each madness radio convo, i became more convinced: to find out who i was after being told i was schizophrenic, i would have to keep going outside ‘mental health’ as i met fear and discrimination around my diagnosis, it became clear that the term ‘schizophrenic’ stood in the way of my being a full human being. and it became clear that a world that would label anyone schizophrenic, even in the name of help, is a world that itself is crazy.
loc 153
so i was left w the question: what place outside mental health could possible be ‘outside’ enough?
professionals made their case for my severe mental illness diagnosis by presenting symptoms as evidence, but that evidence is all still part of me today, even as i live outside any psychiatric care or treatment
loc 167
my madness is leading me somewhere that is more real than what everyone seems to say is real.. i’m leaving behind not just the drs’ diagnosis, but also the mechanistic, soulless, and ‘objective’ reality that gave rise to it.
loc 194
mysterious allegiances puzzled me, exchanges of secret conflicts and unspoken truths (juxt of abuse et al). and for some reason when others looked the other way, i found these knots of communication uncannily irresistible: they hinted at a reality much more compelling than the one openly acknowledged and spoken about, a reality calling to me.
loc 206
domestic violence continues, it must be wrapped in silence.. in mute assent and carefully negotiated acceptance.. the simple act if a sunday visit becomes strange and incomprehensible to a young boy. something was reaching me for in all those messages that i heard and felt..and so maybe to find my way to ‘reality’ i had to leave behind what other people claimed was real..t
loc 234
my father’s decision to remain silent about his own psychiatric traumas was a complex negotiation of survival.. it was his way between the violence of normalcy and the imagined greater violence of that other reality. maybe the openness i wanted would have let something in, something between him and his father, or something in between him and me, something unspeakable and unimaginable, something that might have been too much..
and so.. in these and many other small gestures and silent convos.. there was teaching for me, and some answers to the question of what does it means to be called crazy in a crazy world.. no world more crazy than world of violence accepted as normal..t
loc 288
was i, like laing, discovering that ‘reality’ is violence called normal? was this realization pointing to somewhere else, to a different reality, a place where people who get called ‘crazy’ might actually know more than the ‘normal’ people do, know more about the violent truths of the world we live in
i am human in an inhuman world. i cannot choose to leave behind this heart or its truth, and there may be a price. it may mean being taken to a place where everyone says i am crazy, it may mean going mad..t
loc 315
this book doesn’t try to be balanced; it tries to be balancing.. these are voices left out by other media, voices that helped me and other find our way past a medical diagnosis and towards more human understanding of ourselves…. outside mental health is a snapshot, now an overview and offers new visions of madness, not a single new vision of what madness is.. (just wrote that not against meds et al)
i became who i am by listening to these voices and learning from these different visions..
loc 395
Bonfire Madigan (@bonfiremadigan) a few years later i found the cello, my life long amulet and friend. i connected to a dialogue beyond text and dominant languages..t
loc 504
David M Burns (http://www.freedom-center.org/remembering-dave-burns-march-23-1947december-14-2010).. freedom center.. thru these yrs of awakenings and astonishments my understanding slowly evolved. i gained no control over my feelings, but i began to know them as part of me. i was dealing not w physical filth or external danger, but w a spiritual energy that resided in myself..
loc 607
Eddie Bartók-Baratta (https://www.youtube.com/watch?v=XHqmDhkudxE) .. flute.. i found the flute at age 13.. there is much i can’t vocalize or write about, yet i can express thru music..
loc 621
if i can be at home w the multiplicity of self, then i can be more at home w the multiplicity of the world... t
loc 636
i refuse the language of opposition and fight.. i don’t even want to fight against the language of fighting..
loc 768
Eleanor Longden (Eleanor) – intervoice.. painful abuse that created a shattered fragmented child.. who would grow into a crushed/devastated adult. i buried my past; all the terrible memories of fear and shame, horror and terror.. i pushed them into a box and sealed it over.. but i had essentially buried it alive.. this unresolved pain was screaming to get out
loc 896
Matthew Morrissey (http://morrisseymft.com/about-matthew) – the most terrifying thing the mental health system did was to make me feel i couldn’t trust myself..
loc 909
Louis Sass (https://en.wikipedia.org/wiki/Louis_Sass)
loc 996
Will: maybe ‘madness’ then becomes a way out of relational power struggles too terrifying to be named directly…
Louis: so the link between madness and creativity also need to be seen in historical context: it depends what a culture defines as creativity
? maybe.. maybe not.. why does it have to be defined
loc 1101
John Rice – dj reggae– the said ‘as soon as you can get him employed, that’s what he needs to do. this medication has taken care of the things that were in his way, now he needs to take the initiative.. being off the haldol was like night and day – i began to show real signs of being human again
loc 1132
(on music) i was the biggest fan that ever was, and that was used as the ie of what was distracting me from being a ‘responsible person’ i was always told, ‘you worry too much about the beatles and not enough about your studies’
1149
rock not that complicated.. can be done w very little else besides feeling.. and while jazz is quite complicated, it is rather sterile unless the emotion is very immediate, such as w improv.. so to me, feelings are paramount and what people think are irrelevant: that is wha tis consistent between punk and jazz..
improv ness
then in dec of 1980 the clash released their third album.. sandinista.. i had been hearing reggae influence all over punk rock, but when i heard sandinista.. it wasn’t just reggae.. it was the extended dubs.. and boy, it hit something in me.. it was a rhythm diff from anything i had ever heard.. it just had such remarkable power…
(after having lost interest/feeling from music while on meds)
at first i thought the clash had invented dub, but before long i discovered the truth. there was a very small community of engineers and musicians making music as powerful as scripture, yet completely w/o words. .dub was able to move a person spiritually just by the vibrations themselves. there’s a mystical quality to it that i can’t explain. jamaican dub, it began to teach me things. i became more self-aware than i would have ever dreamed..t
one song that deeply affected me was ‘soul rebel’ from bob marley .. it connected me back to where i was born. dr king is a rebel in your soul, see? there is a great power in his rebellion that’s very consistent w the gospel, but hardly ever seen in christianity as it is practiced. it’s the ability to follow your own path to save your soul. you have the power to be yourself no matter how much courage it takes. and that really struck a chord w me. and ‘redemption song’ that beautiful line he sings .. emancipate yourselves from mental slavery.. nothing but ourselves can free our minds.. t.. i hung onto that song. and i still do..
loc 1187
Susan McKeown (@susansings)(https://en.wikipedia.org/wiki/Susan_McKeown) irish music – i was angry at the mainstream mental health discourse and the glossy ads from the pharma industry; it was irritating that there wasn’t any ay to talk at a deeper level, to deal w each other as human beings. making singing in the dark was my response: it’s the album i wished i had when we were going thru that traumatic time.
in the group of five teenagers i grew up with, there was me, a brother and sisters whose father died by suicide, and then two friends, one of whom murdered the other.. this all happened when we were in our twenties and thirties. it was so upsetting to us all.. i felt, what is there had been open convo when we were teenagers.. what if we had discussed the thoughts in our heads, what if we had felt safe doing that..what if we had discussions about the family secrets, secrets that later cam back in such a violent way when we were older..so i developed an interest in talking about things that aren’t talked about, and the connections between culture and mental health..t
loc 1203
been recording albums of traditional irish music for years, and learned about a ritual in ireland called keening. keening comes from the gaelic word caoineadh, to cry, to grieve…. it was a very funny and formalized ritual where people could let things out for three days.. irish wake.. but for centuries before, keening was a time to celebrate the person’s life as well as to grieve.. primarily led by women.. and women spoke out about injustices they had witnessed, such as domestic violence. so when somebody died, keening was safe place where anyone could express things and nothing could be said against them.. 14-15th centuries.. catholic church wipes out keening..
loc 1231
in a dark time by theodore roethke: what’s madness but nobility of soul at odds w circumstance
loc 1264
there’s something there we all long for, to be so bold as to really express ourselves..t
idio-jargon/self-talk as data
1282
it’s about trying to find the voice that lets you get out of your own way..t
Mel Gunasena (http://www.melissagunasena.com/about.html) video activist.. evolving minds –
loc 1420
will: stillness and sensitivity will guide your attention to what you need to follow..
loc 1433
your body is the only tool you truly need
hunt lost energy
loc 1445
treat things you are ashamed of as invitations to find hidden sources of strength
break the habit of who you are..t
Dave Gray‘s – liminal thinking: when you’re on autopilot.. you can’t be in the moment
imagine that there is something essential for you to discover in the painful parts you might wish would go away
be on the lookout for eccentric, artistic, mad, activist, indigenous, and nonconformist relative s who may also be on ta visionary path
loc1473
Sascha Altman DuBrul (@mps2thotherside)(Sascha) (https://en.wikipedia.org/wiki/Sascha_Altman_DuBrul) – the icarus project.. maps to other side.. the 80s were a wild time, lots of homeless people out on streets, lots of underground econ and culture. reagan had let out all these folks locked up in mental hospitals, and promised them community support. but that didn’t manifest, and folks were really struggling.. so at 14 i found myself in a park w a bunch of crazy homeless people and runaway teenagers, and lo and behold, i felt like i fit in somewhere.
loc 1500
permaculture movement and radical farming scene.. what helped heal .. creating community seed library – take back from ie: monsanto.. protect diversity
loc 1514
at end of 90s people came to seattle to protest world trade org takeover.. when 9 11 happened.. a lot of us were working on radical projects.. and it looked like a lot of change was going to happen really fast.. then the big boot came down and stepped on us.. we had to go back underground…
loc 1556
i want us to talk about how oppression makes us crazy.. i want us to cultivate skills to take better care of one another..t.. i want us all to make maps to break out of the biopsychiatry labyrinth and build a new world from all of our beauty and brilliance…
loc 1582
Dina Tyler (@dinamtyler) (http://www.thetotalhealthinstitute.org/bay-area-mandala-project-members) mandala project .. i practice a being with approach that i would have wanted when i was struggling: forming a relationship, putting the person at ease, and showing them i am not there to judge..
loc 1606
Rufus May (@Rufusmay) (https://en.wikipedia.org/wiki/Rufus_May) voices of everyone.. in western society the responsible, productive and protective selves get rewarded. unless we make a concerted effort, creativity,, spirituality and playfulness get less space to express themselves..
loc 1617
Steven Morgan (steven) peer specialist.. exec direct of the peer run agency another way in vermont.. soteria vermont..
soteria ness
a treatment plan shouldn’t suggest tightening the screws in the cultural machinery that crushed your soul in the first place..t
loc 1647
i stopped viewing hard times as existential crises and started diagnosing them as medical problems.. at first it was relieving.. because it at least pretended to explain what was going on..
i even started manifesting behaviors just because they were part of the diagnosis, as if i were learning to be ill..t
i went thru a period of time where i was very bad off. i subscribed to the ‘mental illness’ worldview ..t.. and was in and out of hospitals..
loc 1661
it’s amazing that we think hospitals are places of healing, because it’s just the opposite.. you’re not met w the human connection we need.. in fact, a lot of mental health profession is designed to stay disconnected from you, and to see you as an object.. in a crisis, what i need more than anything is a human being who cares about me, who will sit and be there with me for hours on end. tha tis totally unavailable in a hospital..
loc 1676
it’s the responsiblity of the society, culture, and family to provide an environment that brings out people’s strengths, whatever they may be
redefine nclb ness.. maté basic needs.. via 2 convos
if we see people who are breaking down as indicators of the larger whole that is in trouble, we can start to ask ‘how can we allow everyone to use their voice?’..t.. but i don’t see that .. i see our society becoming more rigid, more insistent that everyone meet capitalistic ideals.. if someone hates their job, we don’t say ‘quit your job’ .. we say ‘go back to work and take your prozac so you won’t know the diff’..t
mech to listen to all the voices
i was attracted to the idea of letting go of expectations.. we’re taught to have ambitions and goals to achieve happiness and success. the paradox is that when you let go of expectations.. you get more in touch w your nature..t
loc 1692
when you learn how to just be, you end up getting what you really need but didn’t know you needed.
i analyzed my dreams during the daytime and at night they would send me new messages in response.. the back and forth.. propelled me towards a more integrated state.. i discovered an incredible healing potential that is w/in us.. in a way, my dreams acted on what meds had intended to resolve, but much more profoundly: they healed the roots, not just trimmed the branches..
loc 1705
symbols and myth express something that we can’t describe in language. it’s definitely not ‘evidence based practice’
will: the most important things in life are heart-based practices, not evidence based practices,. i learned that from a psych text called the little prince..t
loc 1738
i’ve learned that meditation is not about a blissful state or even a clear state, but about coming closer to what already is: exploring, acknowledging, and being with it, as opposed to just moving around it..
loc 1803
Jacks McNamara () icarus project w sascha.. i thought i had found the key to human salvation, that i could literally save the world by telling everybody how everything is interconnected, that the carbon in their bodies comes from exploded supernovas, and this would end racism, classism, and poverty.. i would love to see that happen.. i just don’t think i’m going to do it single handedly..
loc 1818
folks that get diagnosed w bipolar haven an oversized appetite for life, and adventurous and big spirit, bigger than what consensus reality permits us. and so we run into obstacles..
public consensus always oppresses someone
loc 1834
(on having dangerous icarus wings) navigating the space and continuing to be alive on earth means being willing to have one foot grounded in reality. things like taxes and traffic and family relationships. and also navigate spirit and electricity, ideas and passion. to really see both as two feet walking, two sides of the same coin. if we could have it , we would live in the sky all of the time. but you can’t just get rid of one side. you have to learn how to be in both or you’re not going to stick around..
maybe.. maybe not.. i believe today.. there’s a nother way.. sans taxes.. sans traffic.. sans family relationships (assuming the topic is there because we have trouble with the relation.. if all was well.. no need to talk ie: being grounded in them)
loc 1885
no one is going to pick me up and carry me. i ned to keep functioning in consensus reality. and for me that is where the meds come in as a tool..
perhaps not pick you up.. but perhaps return your shell
loc 1898
i believe i inherited a sensitive disposition. i am sensitive to chemicals and food, i am sensitive to other people’ emotions, i can feel what everybody else in the room is feeling. that is part of my huge gift. and it makes my life really difficult..
loc 2240
Laura Delano – mad in america… it’s human to need an answer, that something is only valid and legit if you have a defn for it and a label to explain what you are going thru. but it’s freeing to be in a place today where i don’t need an answer why i feel certain things, other than because i am a human being..
loc 2271
i was in a place where i had lost my voice: the unequal power dynamic was so real i was unable to question the dr.. the power psychiatry had over me was total..
loc 2286
i look back and see that it wasn’t me that wanted to die. it was medicated me..
loc 2335
Robert Whitaker (robert) mad in america; anatomy of an epidemic.. in 1987 we spent about 800 mn on psychiatric drugs and in 2013 more than 40 bn.. if medication was a great leap forward.. why is the mental illness disability rate rising so rapidly..?..t
loc 2349
40 yrs ago bipolar was rare.. 1 in 3000 to 1 in 10 000 .. now it’s about 1 in 50.. from 1 in 5000 to 1 in 50 in 40 yrs… what’s going on?..t
the who concluded that living in a developed country is a ‘strong predictor that you will never fully recover from schizophrenia’.. only 16% of patients in poor countries regularly took medication, vs 61% in rich countries.. t..that was reason i decided to write mad in america..
loc 2362
brain is extraordinarily flexible in trying to maintain its normal functioning.. thus when prozac makes more serotonin.. brain immediately starts putting out less.. when ie: haldol or thorazine blocks receptors for dopamine.. brain’.. puts out more dopamine..
thyman: these drugs ‘work by perturbing neuro transmitter systems in the brain..brain begins operating diff than normal.. not necessarily that meds are bad.. but you’re not normalizing function.. drugs are not serving as antidote to known disease.. abnormalizing function.. risk of side effects and long term problems..
loc 2402
research lit revealed a possible paradox: short term efficacy, but perhaps increased long-term chronicity.. t..a revolving door syndrome.. better w pills.. but then coming back to hospital.. w more severe relapses..
loc 2440
study by martin harrow: end of 2 yrs wasn’t much diff between medicated and unmedicated.. but by end of 4.5 yrs.. recovery for those medicated 5% and those not 40%.. showed up at end of 15 yrs too..
loc 2454
that study did not appear in any american newspaper.. basically kept hidden from public..
depression.. today about 85% of first episode depressed patients ed up w a pretty chronic course when treated w meds.. so depression switched from an episodic illness to a chronic illness in the antidepressant era..t
similar ness w ie: bi polar..
loc 2467
one study of bipolar patients found that 60% had their first manic episode after being treated w an antidepressant for depression.. meanwhile 10-20% of kids on adhd meds convert to bipolar long term.. t.. in short, initial use of psychiatric meds can iatrogenically (induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures) create a biploar patient..
today.. for bipolar.. good long term outcomes .. have declined from 85% to 35%..t
the plea here is not against drugs. the plea here is for honesty.. at the very least, we need a system of care that allows some people to not be medicated.. where those who want to go off meds get support for doing that..t
loc 2480
one thing we have to do.. is challenge the storytelling. for past 35 yrs we have been told a false story about the nature of mental disorders and what drugs do.. the public needs to know what science is really revealing about this paradigm of care..
here is how false storytelling came about.. nami (nat alliance for mentally ill) started as grassroots org w noble aims.. but also had an agenda to absolve mothers of blame for causing schizo.. so nami, during 80s embraced/promoted notion that schizo is a brain disease.. to remove idea that mothers were to blame.. nami helped popularize notion tha pysch disorders were due to chemical imbalances in brain.. which could then be fixed by psych drugs.. pharma industry and american psych assoc joined in that storytelling.. the apa obviously has financial reasons for wanting to promote drugs..
loc 2492
one of biggest moral challenges of our society today.. to have psychiatric care informed by honesty.. as opposed to being informed by storytelling that serves financial and ideological interests..t
loc 2517
Monica Cassani (https://www.madinamerica.com/author/mcassani/) beyonds meds magazine.. the most important thing to me these days is building a non-coercive healing community..
loc 2530
Joanna Moncrieff (@joannamoncrieff) (https://en.wikipedia.org/wiki/Joanna_Moncrieff) md sr lecturer at uni college london.. book: myth of the chemical cure
taking psych drugs is like using alcohol for social anxiety. alcohol can be helpful for social anxiety, but that’s not because people have an alcohol deficiency. it doesn’t do anything about the cause of the anxiety..t
loc 2544
prior to 50s drugs weren’t seen as addressing any fundamental underlying problem.. then.. psychiatrist started to believe drugs were reversing psychotic disorder.. except wasn’t any evidence of that..
creating an abnormal neurological state.. wasn’t reversing an underlying disease.. but gradually psychiatry stared to believe it was somehow reversing..
loc 2561
on antipsychotics blocking dopamine production.. inducing an artificial parkinsons’ type state..
it was calming people down by blocking dopamine, so scientists concluded over activity of dopamine was the cause of schizophrenia..
loc 2575
we need to understand psychiatric drugs as drugs: chemical substances that are alien to the body, they create an artificial state, w all sorts of dangers and hazards.. they don’t reverse or treat some disease process..t
loc 2592
now we have the idea of milder versions: you are bipolar if you have mood swings. may people w ordinary emotional fluctuations are diagnosed w bipolar disorder and put on potentially very toxic drug treatments for it.. all the research on the effects of drugs is done w the small group of people who have a much more sever and obvious problem..
loc 2659
Richard DeBrandpre (http://www.dana.org/Authors/Richard_DeGrandpre/) books: ritalin nation
2688
even in a very simple animal experiment, the way cocaine affects the brain can be dramatically different just because of one small difference in the environ.. in this ie the ability to choose.. it’s not in the drug..
we don’t know anything about drug effects on the brain if we don’t know the history of the organism and the social context..
loc 2791
what research studies usually do is look at common basic main variables about drugs. they don’t usually consider other key variables such as social/environ context. if they did, it would expose the weakness of general, simplistic descriptions of drug effect that describe effects caused simply by chemical interactions.
if an animal is in a social environ, if it’s not isolated, less likely to self administer a drug..
cocaine and heroin were both widely used a century ago, with far fewer problems than they have today..
today heroin, cocaine, and marijuana are dramatically different than they were a century ago, because the things we think about them as a society have changed.. as social expectations change, actual drug effects change dramatically as well..
drugs are not inherently addictive..
loc 2746
why didn’t addicted soldiers continue to take heroin? because the social environ where they were using heroin in nam was so dramatically diff from social environ they cam back to in us..
loc 2760
when a person thinks they are being taken off a drug their withdrawal is much worse than when they think they are still on it.. have to look at what people are thinking/feeling and the situation they are in socially
loc 2775
will: so addiction isn’t a disease, it’s a life situation, a history, and a whole human experience.
the model of addiction as disease is based on cartoon logic: if expose brain to drugs over long period.. regardless of social environ.. brain becomes dependent and addicted. no.. you cannot ever explain addiction by looking just at drug exposure alone..
cocaine and opiates were viewed then the way we view alcoholic today.. and today we accept alcohol in part because of the diverse range of people that use it.. when alcohol was used largely by targeted subpopulation, irish immigrants, we did demonize it, and we had prohibition..ie: crack cocaine easily demonized today because of who uses them..
will: so demonizing some drugs is a way of scapegoating people w less power..
loc 2806
in many cases people are just given higher doses of the drugs supposedly to eliminate their ‘symptoms’ but the symptoms are actually being produced by the drugs..
once the person is taking a drug, we sometimes forget what they were like before they went on it.. how the person seems might not be their so called mental illness, but the effects of the drug itself.. the horror story of antipsychotic drugs is that we give up the humanity of the person for the side effects of the drug they take.. don’t know what is the person and what is the drug
science of people ness..
huge
loc 2817
David Cohen – ucla.. depending on context, beliefs, attitudes, and expectations, anything, anything, can work, including a placebo sugar pill or sham surgery.. remember.. what ‘works’ is itself a belief about ‘working’
placebo defn/stories
loc 2909
genetic explanations of human behavior are assumed to be associated with the right wing and with the nazis. but the eugenics movement originally, in the late 19th early 20th centuries, was heavily populated w intellectual liberals who thought that eugenics was the future liberation of humanity..
loc 2927
recently genetic explanation of mental illness are sen as a way of absolving parents from blame.. and some gay activist embrace genetic explanations to defend against the idea that homosexuality is just a choice.. so genetic explanations are attractive to all sorts of diff groups.. but i keep coming back to the science. is the science there? so far, it isn’t..
loc 2956 – David Chalmers – the hard problem – explaining the mind and subjective experience, .. in physical terms.. gap between physical and mental.. most complex problem that scientists have ever tried to solve..
loc 2982
Jay Joseph the gene illusion.. the failure to find genes in psychiatry and psychology is now decades old..
loc 3011
instead of emphasizing that the findings of these published papers were not replicated, their view implies that the number of published papers itself constitutes scientific progress.. psych geneticists have been saying this for 30 yrs.. rather than being in its infancy, molecular genetic studies of psych disorders have produced an important finding: the genetic basis of these disorders appears to have been refuted..
perhaps disorders refuted.. ie: what’s normal..not normal
loc 3022
Jacqui Dillon (@JacquiDillon) hearing voices network.. we spend too much time talking about illness and what’s going on in people’s brains and not enough time on what’s going on in people’s lives.. i want the question instead (of what is wrong with me) to be ‘what happened to me’..t
loc 3103
Christopher Lane (https://en.wikipedia.org/wiki/Christopher_J._Lane) shyness and dsm history et al
loc 3237
Ari Ne’eman (@aneeman) (https://en.wikipedia.org/wiki/Ari_Ne%27eman) autism self advocacy network.. small talk and other forms of social communication, which are often less substantive but crucial to succeeding in the social world, were a very significant challenge for me
small talk et al.. what’s normal.. higashida autism law
loc 3266
it’s common for other people to tell you they know your needs better than you do. that is very dangerous..t
loc 3309
in the autism community we don’t believe in recovery for autism. this idea of recovery, that we need to be fixed and that we can grow out of it, has been heavily pushed by parents. it’s trying to make us something that we are not. the difficulty isn’t the autism label, the difficulty is the stigma attached to that label..
stop looking at us as broken people in need of fixing. it’s a problem to turn us against who we are..
3324
ask whether a particular behavior/trait objectively causes difficulty, such as self-injury, or if the trait is only a difficulty because how society views it.. sequencing behavior (lining thing sup), having focused interests (which is in our minds actually one of our biggest strengths), no looking people in the eyes.. these things are socially stigmatized, not objective problems..
loc 3338
there is a 92% rate of selective abortion when prenatal test shows down syndrome.. w all fear and public stigma around the autism spectrum, we might see something very similar if we saw an autism prenatal test..
wh: there would be less abortion of people w down syndrome if they were more welcomed, had a valued place in the community and media, and we heard positive things about the fact that they live high quality and happy lives
loc 3352
we also have a common cause against restraint and seclusion and against aversives. aversives are the use of pain as a means of behavior modification, something we view as very abusive.. basically torture.. .. why should we be tolerating it on the part of children and adults w disabilities..
alan turing would have been diagnosed autistic today..
martin luther said that a proper response to this was to drown that child in the river (withdrawn,.. wouldn’t respond to mother).. a history of violence against folks who display autistic traits, that still carries over to this day
loc 3364
Gary Greenberg (@bookofwoe)(http://www.garygreenbergonline.com/) book of woe, manufacturing depression..
dsm.. a foundational text, like the constitution is to the us.. gives the institution of psych its authority.. for courts and schools..
the modern dsm was psychiatry’s attempt to rescue itself from terrible crisis they found themselves in in the 70s. some embarrassing studies showed that psychiatrists, given the same patient, would disagree w each other more often than they would agree about what mental illness the patient had..
rosenhan’s famous ‘on being sane in insane places’ study also made a big splash, where grad students who showed up in emergency rooms complaining that they were hearing the word ‘thud’ in their heads were promptly admitted, all of them, to diff hospital diagnosed w schizo.. and in some cases, had trouble getting back out..
loc 3385
then in 73.. voted to delete homosexuality from dsm.. troublesome: can you really vote a diagnosis off the island.. is that science.. so psychiatry was, and not for first time.. under siege.. they had to come up w way to diagnose people reliably.. so did a number of dsm revisions.. worked brilliantly.. by revising dsm in 70s psychiatry went from a backwater held in disregard by many drs and became mainstream.. pscyh regained confidence of insurance co’s and govt.. but while new dsm showed that drs could agree that a group of symptoms added up to this disorder, they still hadn’t proved that the disorder existed..
loc 3404
as this dr was interviewing me, i realized he was asking questions keyed to the criteria in the dsm, but he wasn’t really paying any attention to me.. he was paying more attention to he paperwork.. .. how can you attend to the criteria and not attend to the patient..?
wh: that is a huge question people face. ‘is this something that should be medically treated, because it is a physical limitation and i don’t need to live w it?’
the brain, just like any other organ in the body can go bad. it’s the most complicated organ in the body so you might even say it’s more likely to go bad.. the problem is that at the moment, psychiatry can’t distinguish between people whose trouble is caused by something going on in their brain analogous to diabetes, cancer or something like that, and people whose suffering only resembles organic pathology but isn’t.. and so they simply gloss over the distinction..
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i did a lot of research into where this idea of depression as a biochem imbalance came from. i discovered that it is a very carefully constructed myth. drs are so bound and determined to find organic pathology and biochem imbalances behind depression that they just assume it is there, and therefore they see it..
the idea that serotonin deficiencies caused depression, which comes from the fact that the drugs affect serotonin metabolism, is absolutely incorrect everybody knows that. it’s not serotonin deficiencies, it may not even be serotonin metabolism. the brain is way too complicated for these simplistic explanations.
consciousness is impossible w/o certain biochem events. but what does that mean exactly.. i now the biochem event is a necessary condition, but is it the sufficient condition? maybe the brain is serving something else. maybe there is such a thing as the mind..
more importantly, we dont’ even know what those brain events are.
i guarantee you somewhere a dr is telling a patient they have a chem imbalance.. so should take a..prozac.. and then that same dr.. goes to med conf and a colleague asks him.. what about that chem imbalance.. he will certainly say.. no.. we don’t know if there is a chem imbalance. because they don’t..
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and it is a myth that meds correct the chemical imbalances.. if they did, you would expect more robust efficacy from these drugs.. but they aren’t very effective.
pediatric biploar is probably the biggest psych scandal of our generation.. it is virtually impossible to diagnose a child w bipolar because bipolar requires episodic mania, and most children haven’t lived long enough to have episodic mania.. but.. the dsm offers you this incredibly generous loophole called ‘nos’ or ‘not otherwise specified’ and that is what children are diagnosed with..
when you get a diagnosis, particularly a lifelong disorder like bipolar disorder, it changes the way you think about yourself, your id.. asperger’s in the dsm-v was eliminated, and the apa was surprised when people wrote in and said ‘how dare you take away or id’s..’
illness has become one of our favorite ways to understand difference..t
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a lot of what people are after is just being accepted and understood. to be able to say ‘i’m not just awkward, i have asperger’s syndrome’ and that is better thana person just feeling they are stupid or worthless. but to let medicine make these determinations is to invite a number of problems… if you call something a disease, someone is going to try to cure it. and there is the burden of having to think of yourself as sick, no matter how well it is put and or how little stigma is attached to it.. that has implications..
the people who create the labels, the apa and dsm, simply have too much power. they are a private guild, basically a corp, and they literally own these mental disorders as intellectual property. .t
you can look at the dsm not as a list of mental illnesses but as a manual that tells us who we are supposed to be, as a moral text. the pathologies the dsm describes generally occur when people don’t go along with the fundamental economic and social assumptions of our society..
so for ie, our society is devoted to the pursuit of happiness. the dsm suggests that if unhappiness persists for more than two weeks you have a medical illness.. that is social intolerance for unhappiness and an expression of the way we value optimism. and obviously optimism is tied to buying things and spending money… maybe it is oppressive to require people to be happy all the time..t
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wh: so dsm is smuggling moral values into claims of science and objectivity
yes. the dsm is not just a text that says ‘here is one professions’ idea of what the good life is’ the dsm is a text that actually allows a profession to enforce their idea of what th egood life is on everyone. and that’s where it becomes problematic..
wh but isn’t the dsm also designed to say who we should be sympathetic towards and give resources to when they can’t work
the idea that a medical label, when it isn’t stigmatizing you, gives you social resources is a sad commentary on how we distribute social resources like money and sympathy. we are in thrall to the idea that suffering is the result of something that medicine can treat.
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Ethan Watters (@ethanwatters1)(https://en.wikipedia.org/wiki/Ethan_Watters) – crazy like us
every generation has its idea about the human psyche that deeply influence the unconscious mind.. culture shapes the expression of mental illnesses.. because america is so good at exporting our ideas, today we are homogenizing the way the world experiences mental illness..
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we’re never going to understand these conditions except as a combo of genetics, bio, socio-psych and culture
expression of mental illness is directly affected by how you think about tit, and how people around you think about it
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the prime creators of the symptom pool are the healers and drs. they declare if something is a legit symptom, creating the symptom pool and the language of suffering for one moment in history. .. symptom pools can drift across cultural borders..
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japan has a cultural embrace of sadness. it’s written in songs and music.. part of the religion.. there is a belief that sadness can be a place where you find moral guidance. it is not an emotional state to be afraid of, run from , or try to cover up..
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glaxosmithkline threw a tremendous amount of money at japan w idea of not only marketing a pill, but marketing depression itself.. spent great deal of money.. drug paxil.. also spent money for advertising to create grassroots depression support groups.. a whole market worth billions.. with the result that many people in japan now classify themselves as depressed and have a prescription for paxil.. there was no market there before..
we need to have greater respect for cultural traditions and how they work before we go blasting in w multi million dollar ad campaigns promoting the american way of thinking about sadness. it’s akin to biologists documenting changes in rainforest and seeing how, like species, cultural differences are quite literally disappearing before our eyes..
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our responsibility is to help get the society up and running so they can do their own healing..
sri lanka.. often in little villages family of murdered victim living next door to family of murderer.. into this delicate balance came western trauma counselors w idea that healing requires finding emotional relief by talking about violence. this ..potential to spark incredible cycles of revenge..
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in the west we believed that normalizing a bio notion of mental illness, making it akin to someone having diabetes, decreases stigma. research shows the opposite is true.. people .. tend to interact less w people diagnosed mentally ill. they also think of them as more permanently broken and dangerous than when ..diff narrative.. ie: caused by something in their childhood..t
scattered .. et al
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we have a very westernized notion of wanting to treat it (psych break..distress), to figure it out and fix it.. yet the literature very clearly shows that the more you can tolerate and accept the behavior, the greater the likelihood that ill individual will do better over time..
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Pat Bracken (https://www.madinamerica.com/author/pbracken/) .. the answer is not more therapy, the answer is us as a community re establishing a powerful sense of purpose..t
rev of everyday life..
hari rat park law via ..a nother way
i worked in a notorious part of uganda, the lorero triangle.. about 500 000 people lost their lives there in 1980s under a ‘scorched earth’ govt counter insurgency policy. i went w small org caring for people who had been tortured.. but i quickly realized i myself could do a loft of harm bringing diagnostic systems, treatment ideas and a ‘western’ philosophy of mind int a developing country.. they were very vulnerable to outside experts telling theme what to do.. i became horrified to see europeans who would arrive after a six week counseling course and say: ‘i’m gonna counsel people who’ve been tortured/raped’
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what they wanted from people like myself wasn’t therapy and it certainly wasn’t psychiatry. they wanted practical support,, to rebuild the school/roads.. so people could get to market.. so we started to think of our job was assisting that process.. re establishing a way of life.. promoting indigenous ways of healing and helping people restore the routines of ordinary life tat would ultimately serve as the foundation for their recovery
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child soldiers.. needed to get away from the focus on their experiences in the military and start living a life involved in their community.. that means training and job opps.. a clear econ and practical path away from military life..
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postpsychiatry says we need to reverse that: put values, meanings, and relationships back at the center.. what people need is not technical interventions in their lives, but holding human space where our encounters w madness, distress, and alienation can be worked out in a meaningful environ..
or a means to be freed from the environ creating all that..
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Alisha Ali .. nyu
it means no longer pathologizing individuals as an excuse to avoid addressing social ills..
go deep enough.. beyond micro lending et al..
we need to look at existing strengths communities have to change the conditions of their lives
wh: such as micro lending programs
?
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expanding programs like micro lending requires an investment.. but the savings in the long run come from keeping people out of the cycle of poverty and incarceration..
perhaps.. we go long er run.. and disengage from money.. odd you see and discuss need to get to root of mental health.. ‘pathologizing individuals as an excuse to avoid addressing social ills..’ by disengaging from pharma industry et al.. but don’t see it in econ.. we have to go deeper.. if we want to heal
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Jonathan Metzl (@JonathanMetzl) the protest psychosis..
drapetomania 1860s: black slaves who ran away .. better off in slavery.. so much be insane.. advocated whipping and other kinds of ‘treatment’ for this disease.. a clear history of diagnosing black bodies as insane for reasons that have largely to do w political or social factors..
wh: wanting freedom was considered a mental illness
yes.. and at time was given credence in medical lit
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learned from past.. ie: tuskegee experiments from 1932 and 1972 where blacks were denied syphilis treatment and allowed to die in name of research.. but..many more.. today.. african american men are from 4-7 times more likely to be diagnosed w schizophrenia compared to other groups..
wh: instead of being diagnosed w anxiety, depression, or something less sever
yes.. and isn’t just coming from white drs.. these are structural attitudes about race
1952 schizo.. diff kinds of magazines/newspapers/films assume schizo was an illness of white female docility and also sometimes white male genius
wh: and one of the main symptoms for schizo in women was losing interest in being a wife/mother?
yes..women were diagnosed schizo just for creating a public disturbance and embarrassing her husband..
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wh: so psych is labeling women who aren’t conforming to gender expectations and the locking them up in hospitals. this si social control to keep the gender status quo in line..
certainly. a the time people thought they were performing state of the art science, but when we look back historically it becomes very apparent what was happening: in the mother’s little helper era, 70-75% of valium prescriptions were written to middle class women..
wh: so originally it was housewives.. and schizo wasn’t inherently feared or associated w violence/aggression..
the main story of my book is about black power activists in detroit who were swept up into the mental health system after protesting.. they ended up in psych hospitals and diagnosed w schizo. political protest in the 60s became coded as mental illness.. criminality and hostility became increasing described in the dsm.. where they were absent before.. the second version of the dsm came out in 68, an important year of protest.. the new dsm added aggression, hostility and projection to the criteria for schizo, used made case studies instead of female.. and now said things like ‘patient is hostile, he blames other people for his problems’ angry black men are depicted as suffering from new forms of schizo, manifest by aggression and violence..
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wh: so psychiatry diagnoses black protesters as mentally ill. in sam er political dissidents in the ussr are also being diagnosed as mentally ill, and treated w very same drug: haldol.. the memoirs of soviet dissidents describe the drug as torture..
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wh: eerily reminiscent of the situation today, where so many people working in mental health system are questioning it and calling it broken, but also say they are constrained by the larger structures and can’t do anything differently..
and school.. and work.. and ..
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as increasing numbers of african american men were brought to ionia in 50-70s the hospital went from 15% to 70%.. community concerned about people might run away.. in 1977.. hospital literally becomes a prison..
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late 60s whole society was grappling w questions.. what does it mean to be normal/crazy..
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it’s really important to look at the 60s as a case study: fitting something in the category of mental illness automatically meant that we didn’t have to pay attention to the meaning of it as political protest. .t.. the minute you feature a black protester in a haldol ad, then who cares what he’s saying. he’s insane..
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Terry A. Kupers (terry)(http://www.wi.edu/psyd-faculty-terry-kupers)(https://www.amazon.com/Solitary-Inside-Supermax-Isolation-Abolish/dp/0520292235) solitary
wh: what’s driving prison growth
the war on drugs is central..
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when walk into our prisons.. it’s shocking.. 50% are african american.. another 20-25% are latino and native american.. if go to solitary confinement units.. mostly people of color.. desirable programs that provide training and vocational skills have disproportionately white prisoners..
resources going into mental health system declined steadily since 70s.. while prison expanded.. today there are more people w mental illness inside prisons than confined anywhere else: state hospitals are small in comparison.. t.. there is disproportionate number of people w emotional problems among the homeless.., who tend to get locked up.. the imprisonment binge has exacerbated and created serious mental illness..t
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in ca.. basketball courts filled w bunk beds three high so could get 150-200 men in what used to be gym.. result is a lot of violence/rape.. by 80s prisons were out of control.. a lot of what were called riots were often actually protests by prisoners demanding more humane conditions..
authorities could have addressed the real problem in 80s but instead of reducing crowding and supporting rehab.. they resorted to solitary.. the 80s began these supermax prisons and now over 40 states and fed govt have built them.. no programming/rehab/ed opps.. just solitary.. nearly 24 hrs a day..t
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goffman: when take away self-expression.. become more and more extreme in efforts at expression.. in supermax prisons today.. people are screaming, cutting, writing on walls w feces. and people don’t hear about it because it so difficult to visit prisoners..
disproportionate number of prisoners in supermax who were protesting conditions.. political prisoners.. religious leaders.. who have very high level of consciousness about what’s going on..t
4139
research show rehab works. but politicians and people who make money building prisons and supplying food/guns to prisons have self interest in keeping prison populations large. they are the ones who claim that rehab doesn’t work
crime is the new face of racism.. 75% of people entering prison for a felony did not commit a violent crime..t.. yet our society uses fear of violence to justify extremely harsh sentences… if you brutalize people in prison, they will fail when they get out: they won’t have skills for anything other than prison. his is esp true for people w mental illness..
wh: one of most shocking situations that affects mental health is sexual abuse..t
sexual abuse in prison is endemic..t
a huge proportion of prisoners had been massively traumatized as children prior to incarceration.. t..when they experience more sexual abuse.. ie: strip searches.. the repeated trauma makes them suffer more..
in men’s prisons there are gangs/ who look out for each other. a perpetrator doesn’t want to rape someone w tough friends, so they pick on loners.. and people w mental illness are more prone to be loners..
wh: what prison reform strategy would work
we have to work at all levels. 1\ our public schools are failing which sends people into drugs, crime, becoming homeless and getting arrested.. 2\ not providing adequate access to public mental health care 3\ stop sending so many to prison in first place.. 4\ people w substance abuse problems don’t belong in prison..
if equity is everyone getting a go every day.. redefining public education becomes revolution of everyday life.. aka: global equity
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in england, grendon prison provides therapeutic communities where prisoners meet to make decisions for themselves rather than being told what to do every minute of every day..
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Sera Davidow
i do hope we drop the word ‘peer’ ‘just like ‘client..consumer.. patient.. user’ there’s so many of these one word labels. ultimately we need to just be people connecting with people…
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Arnold Mindell (https://en.wikipedia.org/wiki/Arnold_Mindell)
when i began to study engineering and applied physics at mit i realized,.. my god.. these people are not scientific; the physics community is wonderful about exploring subatomic states but they were not good at exploring the observers’ nature.. t..psychology should be a part of physics..
wh: physics wasn’t scientific enough? is this the quantum mechanics idea that the observer, the scientist, influences what they’re observing so we have to study the people behind the science rather than seeing them as separate?
that’s right. know more about the observer.. who are we? who is it that wants to observe something..?..t
science of people ness
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the way science is defined today isn’t really scientific, it doesn’t study first person experience, it marginalizes it.
loc 4936
in quantum physics, things happen that can’t be explained by causation. two particles may be hundreds of miles apart but still connected thru what’s called entanglement. scientists have just discovered this, but dreamers and shamans have always known it. when you go into an altered state sometimes there seems to be a synchronistic connection between you and another person..
when it comes to many things, such as allergies and psychotic phenom, medicine is really in a pre scientific phase.. medical science doesn’t understand extreme states: medication is used just to calm people down. .. everyone goes thru these same states .. calling them sick doesn’t make any sense, so i call them ‘extreme states’
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dreaming and fantasy become marginal and people become marginalized.. these states could really enrich cultures.. if the culture is open minded enough to understand that . that’s my great hope..
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wh: (after arnold’s fish story): so whatever the person is going thru no matter how bizarre or strange is potentially meaningful. you join them as if you were joining a dream, and then you bridge to ordinary reality with them.. (blub)
she’s also doing me a favor. how many times have i had the chance to play as an adult w another adult who’s under the bed as a fish? she’s also healing something in me.. people heal us by what they do, by bringing up a marginalized experience..
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she wasn’t ‘non-communicative:’ she was doing something intelligent that was seen as crazy..
wh: you validated her rather than seeing her as a problem, and so she responded.
i followed my own imagination that something had happened to her. you have to follow your experience.
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quantum physics predicts that entangled states occur, like what he said about the light and then the chandelier crashing.. people in extreme states frequently have magical or quantum like phenom happen to them. synchronistic spiritual connections. today we don’t understand this very well, so it is the job of people who go thru altered states to learn how to bring these, divine experiences or sync experiences, closer to consensus reality. if you’ve had the at experience, you also have the ability to eventually bring it together w everyday reality.
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one of my teachers, richard feynman said ‘an electron or an elementary particle doesn’t just go down the street directly. that particle tries many many diff paths first, it may go by way of the moon or mars.’ it chooses finally the most reasonable shortest and easiest path for itself, bu tall the other paths were needed to be explored first. so that’s how i feel about extreme states and about all the states of consciousness, all kinds. we need everybody, everybody’s way of doing things, even if it doesn’ seem reasonable to us at first..t
mech to facil 7 bn curiosities..
follow your own true nature.. you know more than all of us. if it feels better to take care of yourself in a conventional way and take something to calm things down, go ahead and try it .. if it doesn’t work, try another path, like the electron. just don’t think there’s something terribly wrong with you. consider the possibility that what’s bothering you might be very meaningful, not just for you but for me and for all of us..
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Ilya Parizhsky (@ilya_sky)(https://www.ilyaparizhsky.com/) parenting coach san fran
i thought of how often bennett himself must have had to (literally and metaphorically) swallow things he didn’t want..t
read this right after quote tweeting this
coercion @willhall‘s outside mental health
@KadijaFerryman
““Frankly, there is a creepiness factor of this whole idea of medicine tracking.” Yes. And also raise questions about #privacy, #surveillance, coercion, and compliance: nytimes.com/2017/11/13/hea… #digitalhealth #futureofhealth #futureofmedicine #bioethics
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human beings are incredible. we are organisms inherently capable of using the aware attention of others to help alleviate our suffering.. t ..so as soon as bennett saw i could handle whatever pent up emotions he’s been storing inside, he knew exactly how to make use of my presence..
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he kept upping the ante, showing me more and more of his stored rage. this is the frustration that builds up on a daily basis when adults take young people’s agency and power away..
even in the most privileged and materially well resourced families childhoods are fraught w difficulty. parents are set up with an impossible job and the last thing i want to imply is that it’s the parents’ fault that any of this happens. because children are so incredibly sensitive, we all grow up with mountains of pent up emotions.. by the time we’re adults our feelings are very difficult to access and work thru, because they have calcified so deeply
not yet scrambled ness..
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i entered a very child like ‘anything goes’ state of mind.except that i was 20.. and so people wer not concerned when they saw me walking down the street, and adult w/out parental guardianship. but i sure as hell could have used someone w me, another mind in there to give me attention, because i was in a dangerous head space. i even decided to close my eyes and walk across a busy street in the middle of the block a child’s game ot ‘play w fate’
what ended up happening to me happens to a lot of people who enter such an altered stated of consciousness. i was locked up in a mental institutions. i was forced to take drugs that eviscerated my emotions and i was told there was something deeply wrong with me that will never go away.. that’s exactly the opposite of what i needed. what i needed was love, not drugs.. i needed someone to come with me into my world and help me make sense of it.. not by identifying mistakes in my logic and telling me what i should be thinking instead, but by listening intently, following my mind and getting in there with me
1 yr to be 5 ness
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what if someone could show me they cared enough to stop me, and then listen to my protest w/o going away and w/o putting down my intelligence.. what if they met my free associating and speaking in rhymes and riddles not w a diagnostic stare but w loving receptivity and playfulness.. i could have made use of their presence, and worked thru the horrible isolation that led to my madness process in the first place.. t
invited to exist.. known by someone
as children and as adults, we need to be reached. not w violence, threats, and coerced conformity, but with respect, love, and intelligent presence.. these are the conditions for our blossoming, being surrounded by loving people who can truly tolerate what we are and encourage us to show even more..
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Stan Tomandl (http://www.comacommunication.com/BIOGRAPHY_Stan.htm) dementia.. my deep belief is that there is alway someone there, always somebody home who can be reached..
there is a crossover between dementia and depression, but people often only see the dementia, and so there is no psychotherapy done.. communication is always possible.. one of people’s biggest fears inside those withdrawn states is fear of isolation
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what i would call ‘nocebo’ effect.. with an attitude that nobody is home, it is easy to go thru a quick routine and leave as soon as possible, rather than trying to engage and explore with them.. and so as a result of your attitude, they are less likely to respond. if instead you assume they are trying to communicate, you discover meaning..
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the problem is, especially in nursing homes, there is no place to bring out anger, agitation, or strong emotions. patients get a mark on their chart that stays there forever..
wh: this parallels the mental health system.. people labeled as violent once.. and that mark stays by their name..
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it’s better to keep someone at home than in an institution, and some states even pay family members to keep elders at home.
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wh: this is may family. they have a diabolical power to entrance me (from his essay: christmas vacation in the schizo factory)
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Krista Mackinnon ()
in what was labeled mania i found my brilliance, zest for life, courage, and creative spirit, and in what was labeled depression i found my inner quiet muse, my philosopher and my art..
hospitals do help some people,.. but for me the treatment of my madness was far worse than my experience of madness.. treatment annihilated my connection to self and spirituality, disembodied me, humiliated and numbed me..
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if that label (bipolar) had never happened , my outbursts and emotional extremes would have just been chalked up to teenage angst..
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i learned not to talk about what i was thinking and feeling
the family is taught to be an ally to the medical community and that creates a battle (forced meds et al).. so i teach families instead to be an ally to their relative… i emphasize that the most important recovery tool families have is their relationship..
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to do well in recovery people need to be in power, actively contributing to their world. this is what recovery really means: going out and living life
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rumi: out beyond ideas of wrongdoing and rightdoing there is a field. i’ll meet you there
binary ness
i approach this by being as inclusive as possible (family members, psychiatrists)..accepting all perspective and creating a safe space to discuss, connect, grow.. we have to figure this out together..
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Mary Olson () finland’s open dialogue
the original vision of family therapy was to look at people in a context, rather than simply as an individual.. not just an arbitrary malfunctioning of a genetic script.. but this doesn’t mean blaming; that’s what we have so much difficulty with in our culture.. co-opted by a way of thinking that tends to look at things in linear manner.. becomes cause and effect.. which invariably ends up w blame assigned to the individual or to the parents..
wh: family therapy today in us social service agencies has the idea of the ‘dysfunctional family’ where the entire family system is seen as the problem.. and since these are often low income families, there’s a classism and discrimination, a social control side to it
with other forces at play the family systems approach can end up turning the family itself into a unit of pathology
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wh: so open dialogue draws on the positive side of the family therapy tradition, the idea of meaningful context. one idea is the ‘double bind’ which describes how psychosis or madness is an adaptive response to a confusing communication context
in 50s gregory bateson and his colleagues formulated the double bind theory: a life-important context w conflicting means can paralyze the person and the people around them..
wh: so for ie a parent who tells a child they love them unconditionally, but whenever the child starts to speak about what they’re interested in the parent interrupts and stops listening to them. they’re getting a mixed message; on one level, i love , but on the other.. i’m not interested in you
not yet scrambled ness..
the problem w framing it that was that it can then turn around and be too blaming of the parent. as bateson’s ideas evolved he began to think about double binds across a whole system, affecting everyone, not one person just ‘doing’ the bind to others
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(on finland’s open dialogue) seikkula brought in two key principles from bakhtin: tolerating uncertainty and dailogism. both are very foreign to us society.. you need to tolerate uncertainty long enough for people to find their voice and express themselves..the solution isn’t imposed by professionals, but the dialogue itself generates a more common understanding, and allow a solution to emerge organically.. dialogue means a meticulous back and forth, with find focus and attention.
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in finnish open dialogue there’s an environ where family members talk about the most difficult things. finnish culture is not talkative, but when they do talk they are honest.. adapting open dialogue to the us context, there is a risk you would get the family into a meeting and the therapist would just make nice. but you can’t just gloss it over, abuse ahs to be named as abuse..
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western finland as much lower mental healthcare costs, but they are well funded and org’d in what they do. people work in teams in a way that is labor intensive in the beginning and saves lives and costs later on.. here our mental health systems are ver fragmented, and agencies don’t have the resources to pay people to work in teams..
wh: the us has the most expensive healthcare system in the world, and terrible outcomes for mental health..
finland is also less individualistic. the us puts too high a social value on the individual, even though all the research shows that people w a first break psychosis have much better outcomes if they maintain their relationships.. out system really aids and abets a social destruction of the person and an induction into the patient role, which is very very difficult to reverse once it’s in place..
school/teacher.. employer/employee.. consumer/market.. et al
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Carina Hakansson – sweden family homes..
be you house. .. soteria ness.. spaces of permission with nothing to prove.. nclb ness
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Michael Cornwall (https://michaelcornwall.com/about/) sanctuary for madness
we took all comers, no matter how violent, wild, suicidal or out of control, because we believed unexpressed emotion is at the core of madness..
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Voyce Hendrix (voyce) inside soteria house
(on injecting meds even though patient said was allergic).. i had learned nursing and this didnt’ make sense. he wasn’t doing anything or hurting anybody. the fact was that the nurse was upset. but we deal w him instead of dealing with her..
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what really stands out about soteria is that we tolerated what we call psychosis. as long as people were not hurting anyone we tolerated it. and a lot of people went all the way thru a psychotic process w/o meds
wh: to tolerate psychosis often means stretching taboos and ideas of what’s acceptable. getting naked, being idle for days and days, anger, vulgarity, weird communication styles, obsessive ranting, solitude.. as a society we assume it’s degrading for someone to go thru such things, so we prefer to medicate them into looking more acceptable..t
nothing to prove.. nclb ness
never nothing going on
if someone was in a psychotic state and left the house, for ie, se didn’t stop them. soteria was never locked. if they walked out the door we just walked w them..
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we had that commitment to people, even people we think are so delusional they’re not in touch. it wasn’t about technique, it was about relationships..
i saw interventions and approaches as making no sense. we have an idea that people are broken and we fix them w out interpretations and techniques. it’s not about that. it is about relating to people..so working there affected me as it affected others. i am a very diff person because of soteria..
loc5785
i don’t believe the brain is broken to begin with.. i don’t know what schizophrenia is and i don’t think anyone else knows. these are labels we have put together. a diagnosis just means a normal brain has the capacity to do all kinds of things and function in all kinds of ways.. we adapt to the social system, we adapt our values and behaviors. humans can’t survive in systems where they don’t understand the rules. so we create some kind of other reality and then work w/in that reality. that gets called psychosis. i think that’s what’s going on..
if you create a healthy social system, people will pick out that social system what they need to balance themselves.. i can be who i am and i can be there, and then the other person maybe can use something from me or maybe not use something from me and thereby change who they are.. but there is no way for me to do that to the person..
deep enough.. a nother way
loc 5800
the best and most powerful thing we can do in a therapeutic setting is to be there. the brain has a capacity to change. .. one of the problems w the mental health system today is we are not there. we give meds and then people are just so isolated.. that’s why other countries around the less developed world, w/o modern treatment systems, often have better recovery.. people are not institutionalized, they stay w their families, their behaviors are more or less tolerated.. they can go out in the community, because the community itself is more flexible in allowing for strange behavior.. and so people ge thru it..
loc 5816
soteria was a kind of a flop house.. and a lot of the new residents would wind up making friends w an ex resident who was hanging around.. and so they had someone to share a room with as a way out to leave soteria..
soteria happened thirty years ago. people say we can’t do studies like this today because we have become so pro med that a project like soteria is considered unethical.. but the human impact of meds the dismal recovery rates, the wasteful cost of traditional hospital care.. it all says we have to look at history and at soteria for a new way forward..
short – next experiment
loc 5858
wh (from his ..letter to mother of schizophrenic)
when we met your son i was completely surprised.. the ‘severely mentally ill man’ i was told needed to be forced into treatment was intelligent, creative, sensitive, and also making sense.. like someone distracted by something immensely important, he related to us in fits and starts ad he sat in convo
loc 5870
what after all could be more insulting that telling someone their life’s creative and spiritual obsession is just the sign they need help..
loc 5894
that day i met your son i met a man possessed by a mysterious artistic and spiritual quest that others around him can’t understand.
loc 5906
again and again i am told the ‘severely mentally ill’ are impaired and incapable, not quite human. i am told they are like dementia patients wandering in the snow w no capacity and no cure, not to be listened to or related to.. i am told they must be controlled by our intervention regardless of their own preferences, regardless of the trauma that forced treatment can inflict, regardless of the simple duty we have to regard others w caring, compassion and respect..
when i finally do meet the people carrying that terrible, stigmatizing label of schizophrenia, what do i find? i find a human being. a human who responds to the same listening and curiosity that i or anyone responds to . i find a human who is above all terrified, absolutely terrified, by some horrible trauma we may not see or understand.
loc 5918
his life, like everyone’s makes sense when you take time to understand it
i know you ness..
loc 5943
we must think outside of the false choice between coercive help or no help..t
when you have been traumatized by violence from those offering help, avoiding treatment might even be a sign of sanity, not madness..
i believe it is often the most brilliant, sensitive, artistic, and yes sometimes even visionary, telepathic and prophetic people who get overwhelmed by madness. ..t..we need to discover who they are and meet hem as we ourselves would want to be met, rather than giving up hope for human connections..
loc 6010
wh (afterword)
oppressive systems transform when we offer them a new way forward, not when we back them into a corner.. we are all human..t
means for all of us.. has to be all of us
how to listen so deeply that we discover the other person is also w/in us.. a kind of listening that reaches deeper than words, into the very felt sense of what it is to be human.. t
i know you ness..
loc 6023
haven’t we all to some degree lost control of our lives, our voices not heard and our visions cast aside..
i am often asked how i was released from lockup at langley porter psych institute.. were meds starting to have bene effect? did my voices calm and my suicidal feeling ease..? was i more in contact w reality and better able to take care of myself? no. i was released because the insurance money ran out.. one day i was so psychotic i needed confinement treatment and 24 hr observation.. the next day i was released.. money made the decision.. not the system’s clinical assessment of my improvement or capacity..
the voices of outside mental health teach us that responding to madness in a new way depends on far reaching changes in our world..the problems we point to in the ‘mental health system’ in fact originate in the society as a whole, and to find real solutions we have to trace systems upstream, to their source: disempowerment and ineq.. compared to the ower of money wielded by econ elites and org’s interest groups such as the insurance, medical and pharma lobbies for ie.. ordinary citizens have little or not say over policymaking today.. our most intimate inner lives are fast being reshaped by huge social forces and decision about institutional practices affecting us are made out of reach, in a democracy corrupted by money.. patients, family members, and professionals all feel powerless to change a broken system and in our day to day lives we are more fragmented/alienated/isolated tha ever before. we are disempowerd..
loc 6036
and this is true for every human crisis we face. med same as fossil fuel.. financial.. military.. we all, not just psych survivors need to overcome our disempowerment.
we can no longer afford to discuss things narrowly: the acceptable, ‘normal’ way of talking about mh leaves untouched the real crisis we face. to solve mh problems we have to think outside mh terms..
deep enough.. for (blank)’s sake…
omh is an effort to make sense of what is hidden but not talked about and to find a way to a different reality..
loc 6049
the people gathered together in this book found the courage to create a more honest convo about what it means to be called crazy in a crazy world. their courage inspired me to believe that diff reality is possible..
i believe it we all learn to listen, to truly listen, to ourselves, to each other, and to the voices w/in us and around us, we will discover the same powerful mesasge..we are all, everyone one of us, living in the same room..
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crazywise (doc) – (Gabor Maté –maté basic needs law, Will Hall, Phil Borges et al)
hari rat park law via ..
a nother way
ie: hlb via 2 convos that io dance.. as the day..[aka: not part\ial.. for (blank)’s sake…]
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be you. 