Exploring the Promise and the Pitfalls of Mad Pride

my name is claire bien and i'm president of isps u.s and a voice hearer i'm really delighted to have this opportunity to facilitate the webinar and to introduce ron unger ron's a therapist and an educator especially in psychological approaches for helping people with the experiences commonly called psychosis and he is especially interested in the intersection of trauma psychosis and spirituality his work is informed by his own personal experience of those intersections and ron chairs the education committee of isps us i'd also like to welcome patrick galasso a certified asl interpreter who will be signing for us during this webinar i want to say a little bit more about myself as claire indicated i've had my own experiences of extreme states of mind as a as a young person and i i sat and did things that could have gotten me diagnosed that i never did get dragged into the system but these experiences happened in what was overall a positive period of my life a time of exploration and discovery then just i became to some degree a mad activist um writing speaking and protesting with the group that eventually became mind freedom um but then i realized that we were spending a lot of time telling the system hey you guys should have alternatives but people in the system didn't even seem to know how to how to approach things alternatively so i decided to become a therapist and somebody was providing an alternative approach and also to teach others how to do that so i now work meeting with and trying to be helpful to people who are struggling with mental and emotional challenges or you know especially what the system calls psychosis or what others might call extreme states or madness now now one thing you might notice if you do this kind of work is the tremendous diversity of what might be called mad experiences and perspectives and also what you might um think of as the extreme contradictions including contradictions between what seems helpful to some versus others might say that's harmful to do that or what might seem helpful at one time versus another time you know and if i think if we need who want practical ways of helping people we need good ways to talk about and negotiate these contradictions such as for example the contradictions between say mad pride perspectives where the person values their mad perspective and doesn't want to lose their madness and then recovery perspectives where somebody maybe totally wants to leave madness behind just as they might want to recover from a bad accident or from the flu what i want to talk about is how to possibly manage such contradictions without asserting that one point of view or the other is completely correct in fact it's really hard to be completely correct when you talk about these topics i even sometimes refer to as zen saying and the zen saying is open mouth already a mistake try to say something and put into words you probably already get it wrong in some sense but i also like um you know an approach where you actually become really aware that there's multiple possible meanings to about any statement and so i like this this statement from the discordians where they say all statements are true in some sense false in some sense meaningless in some sense and then they go on true and false in some sense blah blah blah now the discordians worship chaos and try to have fun doing that but while their perspective is a bit you know some sense silly some sent mad their willingness to look at contradictory meanings is i think really helpful and really kind of essential now i um i'm given this talk because i think mad pride and disability pride are really really important things um but i also find value in looking at the way those concepts don't make sense so i'm going to start by looking at some of the problems with those concepts so for example um it's been said that disability pride represents rejection of the notion that our physical sensory mental and cognitive differences from the non-disabled standard are wrong or bad in any way so one question might be um can anybody see anything that's um maybe uh a problematic with that assertion or that that you'd find it'd be impossible to agree it'd be impossible to agree with trying to make it so i can see the chat yeah anybody see anything that i would be a problem with that statement that that rejecting that any um physical sensory mental or cognitive difference from the non-disabled standard are wrong or bad in any way okay so says what about if somebody murders somebody and you say it's not bad based on their state of mind oh i was thinking that person was evil so i killed them all right it forecloses grief that people can experience through loss of ability and also the struggles of chronic pain maybe doesn't allow for necessary accommodations um or that the differences can still cause problems yeah so it's um so those those are those are um important things i think in order to assert that there's no way that anything could be wrong or bad about any sensory mental or cognitive difference you kind of really need to assert there's no such thing as a mistake because mistakes after all are just a different way of seeing or thinking about something right um and then it also follows um that we can't blame anyone for treating us badly because after all they're just acting on their the way they look at things and what they believe about things right and you know we can't say that we if they can't say we're bad we can't say they're bad either um so so my sense is my position is not just that this radical stance is completely untrue because i think there's something to it but i think we should also be aware of the way it doesn't make sense and and that's the one of the tricks i'm hoping people pick up on this is just looking at things in all different kinds of ways um so um so another problem with the concept of disability pride follows from the common definition of pride because according to most definitions pride is something we experience relative to ability and achievement and and so that's kind of like the opposite of disability or inability to do something so if you're proud of something you typically want more of it right i mean people will work for years or a lifetime to gain various kinds of abilities but would it really make sense for somebody to do something that would increase a disability so this anyway there's some problems with disability pride i look more specifically at mad pride on issues um you know i think it's true to say that from the perspective of um the general public that the concept oh i've already been through that one sorry i'm i think it's true from the perspective of the general public the concept of madness is usually one explanation for why people act in a way that's believed to be wrong is people have expectations of how people should should act and then when they don't live up to those expectations they have to explain it so one is that maybe the person is bad they just don't want to act right and another is that well maybe they're mad they're lost somehow and they don't know why or how to act right and then a third might be they just don't have the capacity for some reason to do what we think they should do so if i'm say if i say let's say i'm i'm mad but it's fine with me and i don't you know even want to change what i can but then it's wrong for others if they push me to change so they should stop doing that i'm really saying that i shouldn't have to try to change to meet others expectations but others should change to try to meet my expectations again there's a contradiction in that um so but let me take another perspective on that so because so far i'm i'm saying maybe um looking at um the problems with thinking that everybody's okay just as they are um but there's it's also interesting to look at perspectives that say that maybe everything is okay just how it is you know like what if we really sat a little longer with that position that maybe there isn't such a thing as a mistake um you know like what if you know no matter what we do everything somehow ends up the same anyway um you know like you can look at this from different perspectives like you know aren't we all going to end up dead no matter what we do or if it's really true that we're one with the universe isn't the universe going to go on and and have its liveliness forever regardless of what we do um so there was a period in my life where i was really questioning the meaning of everything and one thing i questioned was this idea that anything could be better than anything else um you know we think or feel that something's better than something else but what if that's just an illusion just an attachment to something oh i get attached to wanting it this way when really it's not necessarily any better than anything else now one of the curious things was at that time i actually thought i was superior to everyone else because i recognized that nothing could be better than anything else which of course there was a big contradiction in that um to be consistent i would have recognized that if nothing can be better than anything else then you really can't be better by recognizing the truth of that so anyway this notion that nothing can be a mistake relates to this this state of mind that's been called radical acceptance where you just completely accept everything just as exactly as it is that was actually brought to western psychology by marsha linehan who was a psychiatric survivor even though she did that for years now um i gave this kind of talk once before and emily cutler who's organized a meds bad studies webinar series for madden america she critiqued the emphasis on acceptance and the modern mental health treatment because she didn't like the notion that people that were had diagnosis should should change to become more accepting while there was not an equivalent sense that the world should change to become more accepting of people including mad people and i think that's a really important point um but i think there's also a sense where one can accept everything about oneself including you know like if i'm really going to fully accept myself i might find well there's parts of me that are actually furious with the world for things that it does and ways it causes pain and suffering so i can actually have kind of like one foot in radical acceptance that maybe everything is perfectly fine the way it is and then another foot and and maybe the part of me that wants to fight for social justice is a perfectly fine part and i can organize around that um it's kind of paradoxical but i think um it's actually kind of functional it's maybe a little hard to wrap your head around but hopefully i'll make some sense of that kind of thing um so this idea that maybe nothing's necessarily better than anything else um and that maybe our our judgment actually causes us problems it's kind of interesting that that you can find that idea even in really ancient ideas like if you look for example the story of adam and eve in the bible what did they get in trouble for they ate from the tree that gave them knowledge of good and evil well what is knowledge and good and evil it's the idea that one thing is good and one thing is not um so so there's that kind of idea that judgment causes problems so and then i want to show just a really short video that illustrates another version of that problem with judgment and this this one is this is stole the story is told by alan watts um but it's a chinese story so let me just play that very briefly [Music] once upon a time there was a chinese farmer who lost a horse ran away and all the neighbors came around that evening and said that's too bad and he said maybe [Music] the next day the horse came back and brought seven wild horses with it and all the neighbors came around and said why that's great isn't it and he said maybe the next day his son was attempting to tame one of these horses and was riding it and the throne broke his leg and all the neighbors came round in the evening and said well that's too bad isn't it and the farmer said maybe the next day the conscription officers came around looking for people for the army and they rejected his son because he had a broken leg and all the neighbors came around that evening and said isn't that wonderful and he said maybe [Music] the whole process of nature is an integrated process of immense complexity and it is really impossible to tell whether anything that happens in it is good or bad [Music] because you never know what will be the consequences of a misfortune or you never know what will be the consequences of good fortune [Music] all right so so anyway is it interesting like if you know you can't really know um you know what's ultimately going to be good or bad so when we're um it you know it's it's it's there there's a lot to that um but um but it relates to this the thing like how do we know what to be proud of if we don't know what's ultimately good um and i also think that kind of relates to that there's a notion and um that goes way back that pride maybe is a sin or pride is a mistake or pride goeth before a fall um you know and if you don't know what to be proud about you could in some sense be equally proud of everything and everybody since you don't have a reason to prefer one or over the other or proud of just as proud of all your ideas but then how do you decide actually what to do um see one thing about life is that um to somehow live our life we have to choose one thing over another for movement we have to make choices um so we we somehow need ideas about what's what's you know better and worse but at the same time having ideas like that can get us into all kinds of trouble that's a real basic paradox um so then you say who or what confirms choices as worthy or worth being proud of um and that's where i think it gets kind of political um you know like should we just say that any choice anyone makes is as good as somebody else's but then what do we do when somebody else's choices interfere with my choices um do i just say that that's okay if or do i fight back and then maybe interfere with the choices others are making trying to you know impact me often we end up with kind of social contract between what kind of choices people should be able to make freely versus when they should defer to the rights of others or consider the needs of the group and then there's also politics that happen within a person now there's a there's a woman i co-facilitate a hearing voices group with and she recently spoke eloquently in the group about how she wants to be in charge of deciding what in her extreme state experience is a gift and something to be proud of and what is maybe a symptom or a problem or something to work on changing and and i'm pretty sympathetic that with that her wanting to choose for herself but it does get complex because people for example don't even often have agreement inside themselves we sometimes value and do things which later or maybe even while we're doing them feel really bad to other parts of ourselves and and here's an example of some of the complexities you know let's say i'm talking to someone who says that well tonight i'm going to go shoot myself and i'm proud of having the courage to just end this stupid meaningless existence and if i take the position well he's he's got the right to choose for himself and who am i to disagree and then let's say he goes home and he shoots himself in the head but he actually survives and i actually met somebody once who did that they had shot themselves in their head and survived um and and then he comes to me and says what were you thinking you know i was you know telling you i was suicidal and you just told me it was okay you know if you had done something i wouldn't have had this terrible brain injury um so so again but if you've um you know been around the human rights when in mental health movement a lot you know often when professionals intervene that cause more harm than good um but i think professionals also worry about what if we do harm by not intervening it gets again very tricky um and you know and it's just this big political thing like who gets to decide who who who um has the answer um unfortunately you're not going to get the answer in this webinar what i'm going to propose is that we just kind of have to we just kind of have to stay uncertain um it's most practical to keep it an open question so i like this this quote from emerson where you know people wish to be settled but only as far as they are unsettled is there any hope for them um and i think this just staying unsettled is also like key to the open dialogue approach in which they say you know they want to be looking at things from different points of view and and and they think they're really stuck if they're only looking at things from from one point of view and and they they understand that when you have to make decisions you have to settle on something but in between it's really important to be looking at things and and letting all the voices be heard to try to pick our ways through this difficult stuff um so what this diagram here does is it kind of illustrates how we can both value sanity and value madness even though in some sense they're opposite of each other so there's times that we're having problems with um with with our you know our mad experience and so we really want to work on recovery i want to achieve some sanity i want to get back to looking at things the way other people do and processing things the way they do but but one thing is is sanity is really not doesn't often have the answers to everything in our life there's there's problems that don't have an answer with insanity and so because those problems tend to build up then there's actually some value in going outside of sanity and everything outside of sanity might be called madness right um so we recover from sanity and go back into madness go back into being beyond sanity but that in itself can cause problems um and so those problems build up and so then we might need to work on recovering our sanity again now if we look at things this way um it really allows us to see that both have value that one might have more value at a given time and it's not all about you know sanity being this always higher state sometimes sanity is what we need to work towards but sometimes it isn't it was you know robin williams who said you're only given a little spark of madness you mustn't lose it um but i think actually it is common that we lose it you know we lose our spark we lose our buying inspiration and and and trying to fit into the normal but then i think it's also important that we have to go back and find it sometimes and and we have to um you know go mad in some kind of way now hopefully we find a way to do that without going too far into madness or being able to come back to sanity when we need to and so that's all you know finding some discernment about all that is really important um i think what i'm you know like um you know i i don't typically identify as like oh i'm a mad person so i'm a person who values madness as part of me is the way i typically do it or think of it because i see some value in the mad part of things and some value and um in in in in the same part of things i would say it's important not to overvalue madness but i think a big problem in our current mental health system is overvaluing of sanity and stability um in this slide i call stability the false god of the mental health system and that's not to say that i think instability would be a better god i think we're better off valuing both um which fits in with what we know from the science of complex systems that life happens somewhere between order and chaos between stability and instability um so what maybe we could also say between sanity and madness sometimes we have more of one or than we or more of the other but we really need to have both in some ways in our life um that touches on this slide like our disturbing emotions and madness like a potato interestingly um being mad in english is now more commonly used to refer to being angry um but really all disturbing emotions can be understood as a bit of madness now it doesn't work in our life to just let them take over the disturbing emotions take over but seeing them as pathology can also be really harmful there's a saying about feelings that i often repeat to people but i think it applies to madness in general and this the statement is that feelings are like children it doesn't work to let them drive the car but it also doesn't work to lock them in the trunk um and the way that relates to the potato to get back to the potato is that it was tick not han who who said that um having mad or angry feelings or having other disturbing emotions is like having a potato if the potato is raw it has very little of any value to us and and actually can be harmful if we eat a bunch of raw potato but um but if we hang out with it get to know it cook it we can draw out what's of value in it and then it can be of real value in our life and so then it becomes something that we can be proud of when we kind of like wrestled with it and and found what is a value of it and so i think the same is true of madness um another way of looking at this is the importance of valuing both sanity and madness is portrayed in this diagram by isabel clark and her colleagues and they're pointing out that the experience of madness or having non-shared reality other ways of looking at things is really something we're meant to have um but we're also meant to have some kind of understanding of ordinary thinking shared reality and and it's when we're in touch with both that we do best because that's when you know sometimes we need to look within our non-shared reality and find things that are left out of sanity and those things are important and other times we need to really not get lost in what's inside us and tune in to what's outside in order to do better i'm not just going to try to tell you exactly when you need to do which but it's just that just having that sense that hey there's a value to both sides and we don't want to have too much pride in either side we don't want to have too much pride in our sanity and we don't you know because as david oak says you know that normal people are destroying the planet you know what we think of as sanity is not completely sane um uh so anyway i think this slide also relates to the question of whether whether shamans or people who um go into really altered states as part of a creative or spiritual process are mad now many of you have probably seen the film crazy wise which explores away in many indigenous cultures young people who spontaneously go into altered states are then trained to go into such grant states in a way that benefit others now the way when they go into those states in some sense you could still frame it as maybe madness because those are the states that other people get lost in but the difference is that the shamans and others that have become successfully creative have found a way to go in those states and not get lost it's like the difference between somebody that goes into wilderness and needs rescued and somebody that goes in the wilderness and knows where they're going and has a fine adventure so again it's like that bringing more discernment then that allows you to really be more proud of experiences that are outside of the mainstream so what i'd like to do now is compare and contrast a number of different possible sources of of mad pride because people understand mad pride pretty you know their varying understandings and they all have some degree of of worth or value um it depends to a particular individual at a particular time so so one of the ways of understanding mad pride is just saying hey other people see what i'm going through as bad but it's actually something good it's actually a positive thing it's not disabling or harmful at all and in some cases that might actually be true and in some cases it actually might be harmful to the person that they're not seeing the problem with their own state that maybe it's not entirely helpful to them but another meaning of mad pride is being proud of something which might be hurtful or disabling in some sense but which is also helpful or a gift in some other sense um so you know an um example might be a person who's been you know had they were traumatized as a kid then they pushed it all away they seemed to become an apparent success and then all that stuff kind of weld back up now in some ways that may be very disabling to them but on the other hand it may be actually great that they're finally turning and facing what happened to them when they were a kid even though it's really disabling for a period of time but they can be proud that they're actually going on that journey and then or it could be something that actually is it really is just overall detrimental but it leads to some other experiences and connections that are a gift and so like um you know that that for example relates to a lot of what people have found in disability pride so somebody might be let's say you know they're deaf and um they can't hear that's a disability but on the other hand that allows them to become part of the deaf community and they have really rich experiences in that and they you know learn all sorts of things they never would have learned if they weren't deaf and they're really proud of all those things um now also you can have pride around something that is you know you see as really detrimental but your pride is in the strength and skill that you develop and responding to the challenge it presents like i know one guy who hears voices and he has no proud pride at all in his voices even though some people do he has no pride in that but he has proud in his strength that he's developed to face the voices so again he people are entitled to you know the kind of pride that works for them um yeah i mentioned david oakes um you know um he was the former director of um mind freedom and he really um he likes now being called a psycho quad um because he unfortunately had an accident where he fell and broke his neck and so he's now quadriplegic and he's also a mad activist from way back um but you know he's very interested in making connections between mad pride and the physical disability world um so um yeah i just wanted to kind of like mention mention him uh you know i think he's made a great adaptation to that and is very proud of his um like both he's both fought to get back some functioning by like doing a lot of physical therapy so that he can move his arms at least to the extent he can but then also just accepting that there's some value in him just having a different kind of experience than other people do which gives them a unique perspective on the world you can have pride in that too so you can just be proud of being who he is um so um i think what i like to do now is dig a little deeper into the the meaning of mental disturbances specifically um you know i think there's a tendency in our society in the mental health system to pathologize that which disturbs us so again that's whether it's a disturbing emotional state some anxiety some grief or whatever or voices that come in and disturb us um or sometimes there's just an overwhelming upheaval in our mind which really goes beyond comprehension um and so the focus is always put on just suppressing the disturbance usually with drugs but also with very various kinds of persuasion or coercion and that's true even though we've known for a long time as many therapists say you know what you resist persists or what you try to suppress goes down in the basement and lifts weights therapists have saying like that because they're aware of how that works um now we could just try to turn that on the on its head and celebrate that which disturbs us and then though we might be accused of romanticizing madness and i don't think that's really the answer either i think it's more complex and nuanced now when we look at bigger social systems it's clear that disturbances can be both good or bad or sometimes have a mixture of both and so that's i like the metaphor of revolutions which obviously can be a severe disturbance um you know they clearly can have very diverse outcomes you know some revolutions end up making changes that become a real source of pride like fourth of july and we celebrate in the us yay revolution uh that's the more romantic or positive side of revolution um but then you also see countries having revolutions that lead to massive and horrific disasters that may be gone for years or decades uh failed states um so anyway it's very common for governments to see suppression of revolution as the solution for anything that is at all revolutionary but that can really backfire and that was john f kennedy who said those who make peaceful revolution impossible will make violent revolution inevitable so lots of people have noticed when they just try to resist something disturbing inside themselves they set off basically an internal civil war eleanor longdon is a person who's spoken eloquently for example about the way psychiatry taught her to try to focus on just trying to suppress just one slightly disturbing voice she heard and pretty soon she had a war going with 12 loud vicious voices now it can also fail when we just try to appease that which is disturbing so eleanor long didn't try that too you know she tried just listening to the voice and doing whatever it said sometimes it led to some funny things like when it told her to take a glass of water and pour it over her professor's head which she can laugh about now um i think it got her in trouble but it also led her to do a lot of pretty miserable self-harm when she was just doing whatever the voice said so so what does work both for revolutions and countries and and disturbances in the mind well i think it's a combination of being open to negotiation and being in influenced by what's trying to disturb us um and setting limits and refusing to go too far like hey we'll do this for you but we won't do that um so it's something that has to be worked out so like if a government has too much pride in itself it will refuse to bend or refuse to listen hey maybe what we're doing isn't working for everybody um and then it might try to brutally suppress the opposition or drive it to violence while a government that bends too easily would just get pushed around by by forces that might then take over and become oppressive themselves so i think it's the same for revolutions in the mind otherwise known as madness um you know um so there's can be a lot that's good in revolutions in the mind but we also have to be cautious about being you know too sure that it's all a good thing because it can also lead to to real problems you know like in the who song you know here's a new boss same as the old boss or you know repeating just more more maybe not getting anywhere um but if our if we stay more in that place of uncertainty and negotiation and hearing different voices and trying to work it out then i think we can actually move in a good direction um you know another another metaphor for understanding madness is that of fire um you know often i think we want just a bit of madness around like when you have a fire in the fireplace it's a very contained bit of madness but there's also times when it can be useful to have fire take a much bigger role like when uh here in the western states in the u.s for example we're gradually learning that letting our forest burn regularly in a modest way is actually a way of avoiding having too much debris build up which can lead to more catastrophic fires later so sometimes allowing a certain amount of fire or certain amount of revolution keeps us from the catastrophic ones later um so this whole thing about revolution and madness and pride brings up another issue that i want to touch on and what's the relationship between trauma and mad pride and so we might ask ourselves the question if um madness for example results from damage due to trauma why would be proud of it i think in seeking an answer to that it's important to look at how a madness can be not just something bad that happens to us after trauma but more often madness involves an attempt to heal the trauma or to correct things so though it can also get off track and cause more problems just like revolution can um i mean that was kind of like my experience where i traumatized as a kid and developed this really sense of myself as this defective person and then the revolution was when i tried to throw off all the ways i'd looked at myself and become a completely new person and see the world completely different and eventually start feeling like i'm god and can recreate the universe but um but there was an attempt to revolt against the patterns i'd been stuck in and so so that can be an important part of madness and you know yeah when people experience horrible things in psychosis that can also be an attempt to heal for one thing it can be a way of trying to grapple with the horror of things that happened earlier that were never digested and so there can be something positive in that but a key thing is that if people get the right kind of help or the right kind of luck or a mix i think definitely that's what happened with me i never really got professional help but from books and friends and peers and all that i got the kind of help i needed um but anyway after going through a period of revolutionary disturbance the person may discover a new balance a new vision of how to live that can be experienced as very valuable and so that's why some people have called the whole process of going mad um can be the renewal process um and so this process has you know has been divided into three basic stages you know in stage one there's there's some kind of a problem that can't be solved within our conventional ways of thinking within the constructs that exist in our mind within our version of sanity and so so that's where the revolution happens or temporarily our constructs are shut down we start processing things outside of our normal constructs and that's when we're way out there and in what um some people think of it as madness so it's also the state that joseph campbell talked about when he said that that mystics swim with the light in the same sea that the psychotics brown or something like that something to that effect because um but but it's actually not true that everyone goes often people go out there and they're just confused and floundering but they actually find a way to draw on something that then allows them to put themselves back together in a new way and that's stage three and um of course whether that's done successfully or not often depends a lot on whether people get the kind of support they need whether they can do it under a state of low enough stress that they can keep moving things around until they kind of get it right and it feels good for at least a while now in indigenous alters it was often understood that when individuals went through this kind of process they would often come up with something that would enrich the whole community so they would deliberately encourage altered states through the use of things like trance induction and ceremony or isolation and vision quests and fasting sometimes psychedelic drugs now this was all understood to be dangerous but it was a risk worth taking so that the group would have access to healing and new perspectives and general renewal and of course they also worked out ways of reducing the risk by having you know really good community support and you know and and and then when people seem prone to those kind of altered states they kind of educated them on how to navigate them you know and that's the kind of stuff that obviously i think we could use a lot more of um so it's always like where to go with all this um you know like um it's just to recognize that there can be a lot of value in this process of going mad assuming we can work through it in a good way and some of the ways you know like learning learning from from shamans that this ability to travel into an altered state and then come back is really important now a more mosaic version of that is just becoming dialogical being aware that there's different points of view and being able to explore a point of view but then being aware hey let's hear the other voices too and let's draw them into relationship with each other um and that skill of being able to relate to different voices and and help them work it out peacefully is is really just this the key to what's called biological practice um and you know or just different kinds of collaborative exploration like you know i teach about cbt for psychosis and when that's done well it's collaborative exploration the therapist doesn't insist they have the answers they're just like hey let's explore together what's going on and what might work for you and what the advantages and disadvantages are of looking at things in different ways and and that kind of stuff and it's open to the idea that there's something of value within this psychosis as well as looking at hey what are the potential problems you're running into here how do we what are the some different ways we might try to avoid those problems um you know only what we need is a mental health system where these kind of things are routinely practiced these kind of skills are part of what people know we also kind of like need some safe containers for people to explore mad states of mind there's different ways that that might happen i mentioned um i mean there's such there's been you know um some you know madness sanctuaries were created in the past like places where people could just go and live and explore altered states of mind that now those are pretty hard to organize but then there's a lot of other variations that can work when you don't have access to those john blackwell has done some interesting stuff where he's created retreats where people have the intention of exploring extreme states so maybe people that had previously been hospitalized but now they want to go back and kind of explore what was a value in that's in my altered states use special breathing and supported environment and explore things there's a there's an isps webinar that's on youtube that you can look up about that if you're curious but open dialogue helps people explore different points of view um any kind of good therapy that especially therapy where the therapist is open to exploring the the possible positive side of what seems to be madness um there's there's spiritual traditions that that support spiritual emergence a lot of different kinds of expressive methods um because people like writing as often like when i was out there just exploring things and writing really allowed me to work stuff out in a safer kind of way or you know art kinds of stuff um performance it's an interesting thing with performance if you can get an audience like for example you know i wanted to believe i was a prophet that could change the world or something like that but you know what one thing about people that are called mad they're often prophets that don't have any followers so i kind of realized hey i need followers and one thing about trying to have followers is you often have to adapt your message to make it a little more sane so that it appeals to the followers um but but it's also nice to find people that are willing to go into kind of wild places with you and um that's one of the things that happened in my journey um this image on here is um of the book cover of a book that my friend john law is a co-author of tales of the san francisco cacophony society and then it says at the bottom spawn of the suicide club well this the suicide club was a a group of uh kind of weirdos and urban adventurers that um in the late 70s when i happened to move to san francisco at 19 years old um who um we you know we were just creating our own little weird realities and and doing strange things my friend john law had just gotten out of a psych hospital and i had not gotten into the psych hospital though a lot of people thought that told me that i seemed pretty psychotic but anyway we started we were both interested in in kind of like connecting our altered states with other people and actually finding that there were ways that people were interested in altered ways of looking at things and living and doing things um it made me sort of adapt what i was saying and doing so i made more sense to others so i could have followers um but also i appreciated the flexibility of other people being able to see hey maybe there's something of value in the weird stuff that i'm coming up with so i think a society that can open up more to the value of that there's something in mad altered states and that there's ways to explore them that aren't destructive as can be really helpful um so in summary you know i think um you know what we have in most of our mental health system right now is professionals who are too sure of the value of sanity and stability and they aren't willing enough to question that and they're too sure that mad experience is just awful and pathological and they aren't willing enough to see some value in it um but but one way of looking at it is that we have like our little bubble of what we think of as sanity but then there's really this vast sea of alternative possible meanings to things even like alternative worlds and while mad people may get lost in parts of that world sometimes they also potentially find things um and they could find more if they were taught how to navigate that uncertainty and differences more successfully which is again what they used to do in indigenous cultures but psychiatry too often just labels that vast sea of possibilities as illness kind of like the old maps and in europe that used to say everything around it there be dragons or whatever um so so i think it's it's better to realize that hey actually sometimes a society needs to reach outside of its norms in order to um you know in order to find the things that are missing because any version of sanity is always limited in what it has to offer and often the longer we stick with any version of sanity we run up against its limitations more and more and we need to actually nurture the people who look outside of sanity that there's there's real value in that and that's you know like a really important kind of um you know mad pride i think um it's and um you know that we we and when we're trying to be helpers it's just being aware that there's multiple sides of things we can help people look at the positive sides of things the negative sides of things we can be unsure what's really going to work out because as alan watts says there's no way you can really know for sure we're all trying to guess and figure it out but by being unsettled and dialogical we can have real honest relationships with people and we can really help people live um because you know that's what it's all about is is both living ourselves and helping other people um really come to life so i think that's my spock and now we can maybe move on into the question and answer part great thank you ron and thank you patrick for your signing and thank you to everyone who posed questions we have a lot of really really good questions i'd like to um read a couple that were posed at the very end because it really um addresses the some of the purposes for your giving this talk and then i will go back and and ask questions uh the people started posing around and and also great comments around 12 19 right after ron resumed after having read some of the comments um so one of the questions let's see kathleen lowenstein asked why you're arguing for a strong argument against um eg all disability is positive one can't make arguments against doing things that could harm someone that's counter to being disability positive in your early discussion of disability pride and she'd like you to speak more to that but she adds a bit before you begin to answer the question in my understanding that identity like gay identity allows one to claim an identity in opposition to an often traumatizing and inherently pathologizing mental health system it's not about saying it's all good but it is about finding a voice and sense of community in opposition to inherently invalidating frameworks possibly you're negative this is a question possibly your negative argument is trying to play devil's advocate from arguments against mad pride well um as i'm definitely not trying to argue that mad pride is not good obviously i believe it is i do think it's more complex than gay pride um i've actually been involved a lot in gay pride because i'm i'm gay i've been you know married for 20 some years and i'm sorry i'm very aware of that but gay pride you can really more like say hey just being gay is just good period you know i'm a great lover and i and it's fun and you know and um you know i don't need any help with it thanks but um being madness is much more nuanced um because often you do need help and often you've hurt yourself and and and messed up your friends and you know and and so it's way more nuanced it's really hard to just say oh this is just a good thing and it's wonderful and quit saying there's anything wrong with it you know because actually a person themselves has to say hey there's a lot wrong with it i need help help um but at the same time i so i think the importance of escaping the pathologizing is really critical i really totally agree with that but i think you need to do it a little bit differently when you're working with something with madness you can't do it like you can with gay pride and just say hey this is just a good thing you're wrong to say there's something wrong with it instead you have to we we have to acknowledge that hey this is actually a very complex mini-sided things it may have some good sides to it it may need some terrible sides that you need help with um and that we need to look at in that way more nuanced way so that's kind of my answer thank you and um there there were a couple of comments following your uh comment about um having one foot in radical acceptance and one foot in social justice and i said i love that and ann reed said you know cultivating radical maybe which poses all sorts of interesting possibilities um and you know how one opening possibility and also allowing ones to protect practice self-care from my perspective i'll stop um and then kimberly barton um said choices are not made in isolation they are social and interactive that doesn't mean there's no basis for judgment but rather even if we return to the state of adam and eve the basis is social and interactive involving all of the social pressures and influences and then she continues i meant to pose could we be jumping from the individual to the political without recognizing our social embeddedness i mean i think it is really important to recognize our social embeddedness i think also sometimes when people are mad they're trying to escape social embeddedness too i know that was for me that was definitely true i mean i grew up embedded in a family in a culture that put me down you know i was abused at home i was went to school i was bullied and then i started realizing i was gay and of course that was really put down at the time in the 70s and and so there was all this and so i wanted to kind of like disengage in some ways but then of course you can't that's also really problematic if you totally lose your social connection we're social beings so um there's a lot of complexities there um as to what extent do we just adjust to fit in or what extent do we you know as martin luther king says stayed maladjusted because there's things we refuse to adjust to um so we talked about creative mal adjustment you know and those are things again we need to sort out in dialogue and and maybe that radical maybe that someone had said thank you and um scott norman asked the question what if inappropriate behavior is accompanied by debilitating physiological agony yeah i mean that touches on two things where the person is really suffering themselves and maybe they're behaving in a way that's harming someone else and so like what i'm saying is we have to look at both the like let's just focus on the inappropriate behavior now so someone may be doing something where they're trying to meet some need of their own but then they're really harming others so um you often have to tune into well what's good about that idea you had to behave that way well it would meet this need inside me okay that does sound like an important need but then let's also look at the fact that this is causing these problems out here you know which um and then by in that process of dialogue maybe the person can work out a way of meeting that need they had without causing the harm that they were causing outside um and that's part of that sorting out process that we need to do thank you and then annay i made a comment um uh because you were introduced to someone who's um experienced psychosis she has as well and um was essentially punished and suppressed for her experiences and i have found shamanism many years later and became become a practitioner it showed me that my madness was my shamanic calling also the hero's journey um i'm wondering what you think of this yeah i mean that really fits with what i was trying to say about the renewal process it's very much the hero's journey of you know being called to the journey and going out somewhere and then coming back the return so i totally identify with that yeah and if people could get that earlier you know and john ware perry's diabetes like when people had their first psychotic break they would welcome them into this and say hey we understand you're on a journey we're here to help you with it let's work to it and it would be nice if that's what people with the message people got um i i would like to say that my second extended departure from shared experience of about almost two and a half years um allowed me by going through it it allowed me to really become the self i was destined to be before i began withdrawing and then had several life disruptions so it was such an important process for me um lorna asks i'm really interested in the use of language in different contexts in ireland madness is not correlated with wrongdoing or insanity it can be used as a slang term she he is mad meaning vibrant fun expressing oneself we do not correlate it with insanity but expression of oneself in a non-destructive manner does labeling people as mad at a label to one's identity that may do harm or separate from societal norms in turn adding a burden the use of language and labeling is something we incorporate into our identity great presentation and i don't know that there's a question in there but um i had such a great comment that is it's really interesting to hear that madd has a real different connotation there but i think in that there's there's often that double-sided nature even to words like um sometimes you even see it with schizophrenia like i've seen it used in a in a positive sense um there's a local dj i think who included i can't remember what name used but included you know but or psychotic you know um that's psychotic like hey let's go do it it can sometimes be how people are looking at it you know so it can be sometimes used as a pejorative or sometimes actually something positive and i think that's because people realize the need to break free of the mainstream but then they're often wary of going too far and and and i actually think we need to kind of embrace that sense of duality that that there can be something value in it but yeah we do need to be wary of you know going um you know overboard in a way that hurts ourselves or hurts others but exactly where that line is is something that needs to be talked about and nobody's got the final word on it there's so many complexities to all this that's why dialogue is so important and just talking about it and thinking it through together thank you and hannah owens asks could you speak to the fine line between pride and anisognosia is the latter just pathologized pride yeah esignosia or thinking that you're not ill um you know i think um that's a really complex question but i i think if um rather than talking in terms of illness just talk in terms of whether it's something that's going to work out well or not so i might have real pride and idea i have like yeah i'm gonna you know go put my skis on and ski the pacific crest trail and um and it's really gonna work and then somebody else might go like you're not aware of how hard that is and that you're not in good enough shape for it and you don't have the right equipment and you know and so the question of whether i'm being too prideful and it's actually getting myself into a huge problem or whether maybe it's actually something i'm actually am ready to do and the person that's telling me that i'm not is actually the one that's wrong i mean there was that question is it's it's a question you know and given the exact situation the person that's telling me i'm you know shouldn't do it may be right or maybe i'm actually right and i actually am ready to have reverse that space successfully and so the key thing is finding a way to reverse these spaces um in these mental states and and and just like chaimans do they they can go into a very altered state but then they can come back and they can come back with something of value for their culture and that's and and for themselves obviously and so that's kind of like what we want people to be able to do thanks thank you um and i think you answered this question but um kimberly asks does it seem fair to say that mad pride is distinct from gay pride um yes insofar as lgbtq are not strong recovery yes um and then and this i think this is probably is important and i'm not certain of the context but shelley asks what is the re that reframing again what disturbs us and then an ellipsis and i um i don't remember the context and shelly if you could type at the bottom of the chat um i can i can come back to that question and go on to the next one if you can type the context that would be helpful way more questions than i thought um what do you think of the idea that psychotic experiences themselves are are traumatic events and how does that affect the restructuring process of ongoing psychosis yeah i think that's um [Music] it's a really complex question whether psychopsychotic stuff is traumatic sometimes the psychosis is an attempt to turn towards a previous trauma but often as eleanor longdon points out that the person is turning towards it but at the same time they don't want to see it and so they're disguising it and turning it into other things and and sometimes um psychosis is actually an attempt to protect oneself from trauma so you know like for example in my experience i had a lot of shame you know when growing up and then to try to protect myself from shame i came up with kind of a grandiose identity uh which could be considered psychotic but so in that sense it was protective but then once you create a grandiose identity that other people won't accept you often get traumatized by the way that people don't accept you you know they don't accept that you're recreating the universe as god you know or something like that and so that they can become traumatizing or you get yourself into a situation that's traumatizing or you alienate everyone from yourself and that becomes traumatizing or also sometimes in people's ambivalence you know part of them doesn't want to notice a previous trauma but another part of them wants to just really beat him over the head with it so they finally recognize it and so the mind actually exaggerates and makes things way more horrible than than and and so for that psychosis can be very traumatizing and it can also be protective from trauma and it can also be a process of working through past traumas um so it's very very complex thank you and paulie sabattier has a comment a great comment and then a question one value we have in civilized non-indigenous persons is nightly access to our dreams there we find madness made available to anyone seeking renewal and various ways of understanding daylight life the similarity of night dreams and day life extreme states is the language of symbol a language all modern people need to become familiar with and then the question could you talk a little about what an inpatient treatment system looks like for severe crisis in a way that values the symbol and experience of madness yeah i'm i think when i mentioned you know madness sanctuaries um the some of them which existed in the united states and uh in the late 70s um like if you went into iward where michael cornwell worked it was just a ward in a mental hospital where they admitted people with first or second episode psychosis and they attempted to work without antipsychotic drugs and they just kind of like um main thing is they were just keep people safe while they were with them in their experience and and and had conveyed the idea hey we can you can work through this we can help you work through this and make sense of it so just offering that kindness safety support engagement it can be really really helpful now adding more of an open and they also added stuff that now would be more like what we call open dialogue like hey let's have the person's family and important people come in and we'll meet and just talk about what everybody's concerns are and views are and try to understand what this is all about and often did come up with an understanding of what it's all about um you know i think like open dialogue people i don't say well we should never use something like antipsychotic drugs but use them very cautiously and sparingly ingo lambrecht is uh he's a psychologist but he's also someone who was trained as a shaman in south africa and he would say well the south african shamans working with psychosis they would use the equivalent of medications sometimes they had herbs that calmed people down but they didn't make that the primary focus of what they were doing and that's what i think we should do people have to work through for themselves and they also have to negotiate with others about what physics what what kind of things are acceptable or helpful what kind of things maybe need to be left behind and and and the person needs to shift out of in order to be well in order to live well with others great thank you and very quick question what was the uh from kaleidoscope facilitator what was the isps webinar just mentioned don blackwell sean blackwell um yeah so just look up you know if if you go to youtube isps us uh we have a whole channel and you see one that's by sean blackwell and look at that one thank you um and let's see now aaron soros um she's interested in consent what if one person wants to be free to experience their madness outside of carceral psychiatry but another person is grateful for involuntary treatment um thereby giving a kind of retroactive consent how do we make decisions about risk and value people's autonomy wow we could have a long webinar on that one um i don't have the final answer of course um i think one of the is because obviously you can't how do you predict what somebody's later going to consent to or not is extremely you know difficult um i i would i think one of the most important things i think is for us to recognize that involuntary treatment is itself extremely risky right now i think that's often not recognized so if there's just oh it's kind of risky to let this person go on their own so let's hospitalize them against their will and there's that decision is made without an awareness of the extreme riskiness of hospitalizing someone and that you might be traumatizing them you might be setting them up to be more likely to commit suicide later so if we really weighed that risk we might just jump in when the risk is more extreme and and that at other times we might seek more you know voluntary engagement because i know there's an important study found when they're comparing involuntary outpatient treatment with just um just reaching out to people with voluntary options that it turned out to work just as well to reach out with voluntary options because you know you connect with people often enough um so i think anything involuntary should be saved for the most dire situations but i won't try to tell you exactly where that line should become because that's quite controversial thank you and hal levine asks ron it may be too ethnocentric to think that this reality is it in all caps could it be that people who have those incredible visions be tuning into other dimensions which we simply are not aware of due to a veil of forgetfulness to be in this world is it possible that some people are just in tune with this more yeah i mean i think there's all sorts of possibilities out there and these things are you know really difficult or you know just wrap your mind around all the possibilities we have a webinar coming up that's going to be on the philosophy of madness with odor coosters and he looks at all sorts of paradoxes and stuff about that and trying to figure out reality insanity and stuff like that it should be a lot of fun thank you and kimberly barton asks could the concept of being a foreigner and recognize a person as being unavoidably foreign be helpful as a context for recovery that is um i think it's the word is distinct from a retreat i experienced recovery when i was living in a european culture my level of fluency and understanding of the norms of that culture was limited and others recognized that limit i was able to throw off the limits of our norms that were traumatizing then we know we can't fit in and thus we find our own way i think that's a interesting process i've heard people describe that before having um where they you know and they they were seen as insane where they were but then they moved somewhere really different and there they were just different and they were able to you know find a way to make peace with people around them and stuff like that because it wasn't defined so much as you're different and bad and sick i was just like oh you're different let's figure this out how to be together thank you can radical acceptance include the maybe state um this is zan reed again great um non-judgmentally without avoidance without clinging insisting yeah i think that's a nice way to look at it i mean i think we can radically accept but then also like well maybe there's things that we don't want to fully accept so i actually find it really helpful um well again going back to david oakes he he liked to say when he was working before he had his accident that his goal every day was to go out and change the world and also have a great day and in order to have a great day we often have to just accept that things just kind of like are as they are we can appreciate and enjoy them just as they are um but obviously you go out and fight for social justice you have to be are you put down and say this is okay let's change this you know um and and so finding out just how much of which side to draw from is it's an open question but it definitely speaks to that kind of like maybe and you know i don't know so i don't have an answer but that's i'm giving kind of non-answers and suggesting maybe we can just live in those non-answers i i think that's what we need to do um and let's see shelley asks um any advice on helping my 19 year old son with schizophrenia recognize his greatness within the madness yeah um i mean i think it's it's a process of discovery um but um just having the willingness to to look at that there may be both sides um that there may be that even something that's disturbing and distressing may have something positive to it or be or maybe when it's put in a different form it will become something positive again like the potato which seems of no value before it's cooked but when it's processed the right way oh this actually does have some value um it's it's a it's a big you know tricky thing that you have to work out with each person um and then patty asks um if you um can recommend john weir perry's writing that helps within insightful views of psychosis do you recommend um yeah let's see which are books um [Music] my memory is not um far side of madness i remember as one um i'm not sure that's the best by the way just mentioning john where perry this here's a nuance i think john ware perry was a great visionary but in some ways he was also a very flawed human being because i know a psychiatrist who spent many years treating a woman who john moore perry had sex with while she was a patient of his and you know so that was an example of you know um sometimes people who think of themselves as revolutionaries and on that creative edge they they go too far in some kind of way and that was an example where he went too far with a creative i think as he was really great and bringing a lot of openness to madness but he opened up a little too far in a certain way and um created a big problem so i just want to acknowledge that maintaining humility in the midst of so many things that we think is really a challenge let's see we're we're coming right up on the end um annette said that an excellent book on the subject is the stormy search for the self by christina and stannis lofgrove and um let's see oh sorry i um i i haven't been speaking loudly enough and with apologies um i missed webinar i'm sorry about this one um let's see kimberly asks what is the name of the study involuntary slash voluntary i'd like to say if people have further questions after this webinar um i'm going to be mailing out the slides on the front of the slides it has my email address well actually you can just respond to the email too and just email me additional questions and i'll you know answer them because i know you may have questions that don't get answered here and stuff like that i think we've last question um debbie mcnamara asks you to address the point that she made about neoliberalism i'm not sure that i uh a neoliberal dismissing of positive social causative factors is also unhelpful does that um make sense within the context yeah i mean that the whole sense of the individuals are just blamed for whatever's you know gone wrong with them where there's no the fact that people are stressed by a society where the the one percent are sucking everything out and making everybody work and terrible conditions and then turning people against each other like turning racial groups against each other and you know yeah and then all the abuse that often goes back way back intergenerationally all that stuff is really what people are struggling with and trying to find some way to make sense of and move forward and you know and promise is incredibly confusing to people and and often people going through madness or psychosis or whatever is attempting to sort through that and sometimes as you're trying to sort through you're actually getting more deeply lost but then there's also a thing like sometimes you just need to become lost enough to become clear that with the direction you were going is a dead end and that actually becomes part of actually discovering the right way it's william blake made a statement that really impressed me when i was a young person he said the fool who persists in his folly will become wise and um and and so this idea you keep doing something foolish but then you really see the consequences of that and you maybe see it more clearly than someone who wasn't as foolish as you were um and ollie back in the middle ages often meant madness um we're at 1 30. and thank you so much to everyone there are 95 people here at the peak thank you for being here for asking the great questions um thank you to patrick for signing so beautifully throughout the session and ron your talk is amazing and i can't wait to listen to it while i'm walking or um doing housework as you suggested thank you but um and um ron will close out much more effectively than i so i'm going to turn the floor back mike back to him well thank you claire for really hanging in there with all this and get going through the questions and i really appreciate all that and thanks to everybody that showed up and yeah thanks for the interpretation i really appreciate it all

Channel: ISPS US

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Id: WSbtEJuWQdY

Length: 83min 47sec (5027 seconds)

Published: Sat Mar 13 2021