Thursday, June 21, 2018

Comments by Sarah Knutson

Showing 72 of 72 comments.

  • All this talk of legalizing vs outlawing has gotten really interesting. I quit practicing law 20 years ago because I lost faith in law as a way of resolving human differences. For me, every time someone says ‘we need a law’ I see a social/ relational problem that human beings need to work out at a community level. In my experience the issue usually has to do with social power differences, and is intended by well-meaning people who are too strapped for time and resources to get involved themselves. So they ‘pass a law’ – the effect of which is to delegate the responsibility of protecting vulnerable others to some bureaucratic social entity. There, done! Conscience appeased. Now it’s someone else’s responsibility to care and make everything right.

    With rare exceptions, it doesn’t.

    Yes, in the short run, the new legal protection often becomes a hot issue and benefits a few early adapters. But the existing, damaging power structures typically remain unchanged. The overall effect is that those with power find a new way around it eventually – sometimes even to more advantage than they had in the first place. Plus, the law usually privileges one marginalized group over another. This upsets the existing balance between low totem groups – with the result that these competing outsider groups end up hating each other more.

    Long and short, I don’t believe in laws. I do, however, believe in principles – Like:

    1. like one person, one vote; and
    2. no one gets seconds until everyone else has firsts, and
    3. we’re all members of a human family and the most important thing any of us can do who say we want a better world is to do the difficult, challenging relational work of learning how to treat each other that way.

    A word more about this ‘Human Family’ thang:

    The essence of any family worthy of the name is that it cares about its members and tries to do right by them . Yes, there are rules, but the rules are flexible and able to adapt to individual needs. When the family is feeling happy, well and good about each other, the rules are barely thought of – even though, in practice they may be broken a lot. The only time the rules are cited, is when family members feel threatened – usually because something isn’t working in the family’s relationships between members or with the outside work. This kind of tension is rarely fixed with a rule. The rule, if any, is merely a symbol that family members have worked out the tension between them, renegotiated the balance of power, and now have a coherent plan for going forward. Once the relationships start working – and people feel good about each other again, most challenges are handled by the give and take of natural good will. Often, there new rule is soon forgotten and become irrelevant.

    That’s a very different concept than enacting laws. Laws are basically needed to referee power imbalances and insure fairness when people:

    1. don’t care about each other
    2. don’t want to bother to spend time getting to know each other.

    I’d argue, if that’s the case, and that’s your starting point, then you’re going to fail no matter what law you pass. Trying to create a society that leaves people free to not give a rip about the welfare of their neighbors and communities, IS IN ITSELF a recipe for power abuses and self-dealing.

    In other words, the fallacy is that laws protect us. They don’t. The way to protect us is to structure society in ways that encourages people to care about each other. That’s why Oldhead and others are so correct when they assert that capitalism is doomed.

    People say that the kind of radical change I’m talking about isn’t possible but it is. It requires a change in consciousness and a deliberate change in intention as to how we see and relate to each other. It also requires the social will to free up the resources, time and energy for families and neighbors to spend with each other. That because one of the best ways to foster caring is to
    1. take away their need to compete with each other for basic survival needs
    2. see people as allies (offering advantages) instead of enemies (depleting resources)
    3. see people as being more like you than different on the inside (which takes trust, which takes time and energy to build).

    To be sure, almost no one has that kind of freedom in this society – but we could. We really could decide to adopt a safety net that guarantees a minimum standard of living in return for a willingness to participate in making available the necessary basic level of resources that everyone wants and needs. Again, its a matter of ‘will’ not ‘way.’

    At any rate, whether it’s possible or not, that’s the world I want to live in. So, to the extent I’m able, I’m voting with my life for that.

  • Hi Richard – really great comments. I love this question: “What does it say about American capitalist society (the richest and most powerful country on the planet with overall less than 5% of the world’s population) that it concentrates the highest rates of people labeled as “obese” and the highest rates of people labeled as ‘anorexic.’???”

    This leads to another factor that we really didn’t touch on in our blog, but seems really important. It strikes me that both eating and not eating are stress / survival responses. In other words, physically the body’s survival response shuts down digestive processes during stress (consistent with anorexia). Plus, once you come out of a stress/ survival response, the balance of glucocorticoids in the blood stream leads to intense food cravings (consistent with binge eating and bulimia). Beyond that, because digestion is compromised in stressful circumstances, lots of us tend to crave highly processed foods that are easily and rapidly digestible. Also, the craving many of us have for salty foods could potentially be explained by the need to conserve fluids in high-stress survival settings.

    The convergence of these factors, plus my own experience in a dog-eat-dog survival-of-the-most-obsequious job market that exists in the USA today, is that tons of us are stressed out about just surviving – and our bodies are showing it.

  • I really like what you are pointing out here, Gabi. I think I try to do the same as you. I’ve thought for a long time that some of my habits – food especially – are about longing for deeper connections with myself and others. As much as possible (as much as I can stand it on a given day) I try to at least give those needs (which for me seem deeper and more satisfying when I can meet them) a chance. I also have to admit that my personal theory of life is that the need for meaningful, enduring connection with self and others IS probably a deeper need for many of us than for the temporary comfort that junk food seems to give me. At the same time, doing this work, I’ve had a lot of opportunity to hear a lot of different stories about why different people make the choices they make. What amazes me about that is that I’m continually amazed at how many factors weigh in, how complex these decisions can be, and how many factors affect other people profoundly that never even occurred to me. Painfully, I’ve embarrassed myself enough times in thinking that there was some issue that everybody just had to see the same way, only to have someone convincingly point out to me how much of the picture I missed when it came to them. That’s why, to me, it just seems safer, more respectful, and more supportive of everyone’s well being to recognize the limits of my own experience and my own understandings and do a heck of a lot of listening when someone asks for the attention to be flipped to their side of the coin.

    Adding a note here: Gabi, I also agree that there is a place for sharing information. Absolutely. That’s how I learn. I think what’s crucial for me is how it’s shared. What speaks to me most is when someone tells me what they choose to do for themself and why. Or they tell me what they personally have come to believe is true about something and why. This leaves me the space I need to reflect on whether their values and circumstances are similar to mine and whether the conclusions they have drawn seem rationale, principled and well-informed to me. If yes, then I’m likely to listen closely to what they say and struggle to reconcile and discrepancies between the path they have chosen for them and the path I am on for me. If I have the energy and resources, I will probably experiment with their path and observe whether I get the same results for me as they are reporting for them. On the other hand, if our values or life circumstances feel really different to me, or I don’t have the energy or resources to try what they suggest, or I don’t get the same results after a reasonable effort, I’ll probably go back to what I’ve been doing or look for something else.

    As I’m saying this, I’m realizing that this is probably why peer support speak to me so much. Because the learning process I’m describing here really is ‘peer’ support. It’s peer in the sense that each of us is approaching the other as a responsible equal who is entitled to make their own choices. It’s support because we’re sharing information and comparing notes that each of us hopes will lead to a step up in quality of living.

  • Wow Gabi – I find my responses to what you’ve shared here so confusing. On the one hand, I really really like your point that – to have meaingful choices – I have to know what my choices are. That kind of knowledge and awareness feels totally essential and totally liberating to me. On the other hand, I have to say I really feel a lot closer to Kate and Emily and the way they are expressing themselves here. I get the feeling like, if I had a conversation with them, they would ‘get’ me – and also ‘get’ the very real challenges of my life and not judge me for the choices I decide to make. As a result, I’m pretty sure I would go away from my conversations with them feeling better rather than worse – and as a result probably have more energy to make choices that I would consider ‘healthy’ as would others. On the other hand, I guess the way you’re talking to others about choices here just ends up (possibly for reasons personal only to me) leading me to feel like I want to bash my head into concrete and go eat a dozen doughnuts to try to escape the feeling that some other human being has appointed themselves an authority over what is right for me and would happily substitute their judgment for mine if given half a chance. That’s the world I’ve lived most of my life in – and frankly – I end up wanting to die. Perhaps, like you say, it’s just a matter of semantics. But in that case, those particular semantics – and the ways that those in mainstream culture seem to be choosing to use them – really do end up creating feelings in me that I’d rather off myself than live in the world that those semantics seem to be describing or implying. Not saying you have to change your language, values or how your choosing to express yourself here on my account. Rather, just offering something to consider, given the concerns that are seeming to be expressed about how to promote the greatest health for the greatest numbers.

  • Great questions Gabi- I’m sure a lot of others are asking them too! Here are some thoughts that occur to me:

    1. What if I actually DO FEEL healthier at a weight that isn’t viewed as socially ‘attractive’ – or even socially ‘healthy’?
    2. What if, for me, this weight actually IS healthier than the socially ‘appropriate’ weight for me?
    3. What if, for me, the thing that is really killing me (recurrently making me want to die) is the traumatic memories of abuse I went through starting as a kid and the one thing that comforts me now (because it was all I had then) is food. In other words, food for me is harm reduction in that it is enabling me to dull the feelings of wanting to end my life enough for me to stay alive while I am trying to grapple with the trauma that happened to me…?

    In each of these situations, mainstream society claims the right to judge me based on my appearance of being ‘unhealthy’ when in each case the choice I am making is has significant, perhaps critical, advantages for my well being.

    Even more important to me, however, are questions like the following: Mainstream society rationalizes its judgments out of a claimed concern for everyone’s well-being. But really, is all this judging that we are doing to one another -based on appearances versus known inner realities – really good for our health? Does it make our relationships with each other more honest, accepting and kind? Does all this judging make people actually act in ‘healthier’ ways – or does it just make us try to ‘look’ the part while actually acting (behind the scenes) in ways that harm our well-being…?

    My own experience tells me that this kind of judging, based on surface appearances, has been hurtful to me. I’ve also been told by others that I’ve been hurtful to them when I treated them this way. In short, I don’t think the mainstream rationale for promoting these kinds of judgments is well founded. I don’t believe this way of treating each other as promotes the general well being. To the contrary, I think it damages our relationships and harms the social fabric. At a minimum, it makes tons of us more anxious – which research shows is BAD for our health. As a person of conscience, I therefore refuse to accept or condone it as a helpful or moral way of treating each other. Instead, I do my best to both offer – and stand up for – the radical dignity and radical freedom of each of us to listen deeply to ourselves, for the truthes of our own experiences – and to name, for ourselves, what ways of thinking, acting and being promote our own sense of health and well being the most.

  • Emily, what I so important (to me) about what you are saying here has to do with the issue of choice. Probably a lot of people have a different experience in life than I have. But, for me, the damage in my life has come not so much from the fact that a variety of choices exist. To be sure, statistically speaking, some choices I have may be potentially more ‘harmful’ and others potentially more ‘healthful.’ However, for me, the damage has come from the pressure – imposed by those who carry the authority of mainstream values – to conform my choices to what they view as best. Or else! These kind of attitudes effectively put me in a position where I feel compelled to choose between my relationship with myself (and my own truth) and my relationships with others (and group truth). In reality I want both – connection with self and connection with others. The anxiety of having to make these kinds of Sophie’s Choices (which child do I sacrifice – Belonging or Authenticity…?) has led to a life spent literally tied up in knots internally. The effects, for me, on both physical and emotional well being, have been lousy. Ironically, I’ve made a ton of ‘unhealthy’ choices simply trying to cope with the anxiety of the untenable Sophie’s Choices imposed by the mainstream imperative to conform to the mainstream ideals of ‘health’

  • Hi Uprising – I have to agree with you that – at least in my experience – some things (vegetables, exercise, self-acceptance) seem to promote life and vitality for me more than others (coca cola, doughnuts, ice cream, writing comments like this instead of doing yoga or getting out on my bike). I also identify as gay and have to admit that the fact that conversion therapy exists at all makes me bristle a little on the inside. At the same time, when I reflect on this more, what I think I fear the most is really not that these choices exist. It is the coercive way that mainstream culture feels entitled to impose them on those of us it sees as social outsiders. Thus for me the fundamental injury that human beings do to each other revolves around the issue of ‘choice’. In my experience, those with mainstream values or roles have often seemed to feel quite to substitute their judgment for mine when I either could not or would not tow the mainstream line. In other words, these mainstream enforcers seemed to me to feel basically entitled to overwrite my personhood – including my personal priorities, needs or values of how it is right for me to live – in any area of where my life that didn’t comport with expected norms. As a result, I’ve spent much of my life living with an ever-present awareness (and related fear and anxiety) that if I don’t comply, someone with more social power than I have will feel entitled to make my life miserable and proceed to do just that. In my experience, this kind of social targeting can go way beyond someone denying me basic dignity and regard. It can mean the difference between passing college courses, getting a degree, getting or keeping a job, getting or keeping friends, accessing benefits…. In other words, it can mean the difference between having the social network and/ or economic means to meet my basic survival needs or dying in a gutter. It’s this coercive use of mainstream opinion – not the fact that a broad range of choices (some clearly more objectively ‘healthful’ than others on average) — that, for me, has been the most personally damaging to both my physical and mental well-being.

  • I love these comments Pride and Joy – they are so rich. It’s really true for me that sizeism – like all oppression – cuts both ways. In this article, I was emphasizing the ways that social othering based on big sizes has hurt me. In many ways, I’ve FELT that pain a lot more and the fear of it a lot more. But yes, it totally boomerangs around. As tends to happen in a world that values money more than honesty, integrity and kindness, things that are viewed as socially attractive get commoditized and sold. AND, once the culture commoditizes something and sells it as a ‘product’ then it gets treated – even if it is a human quality or a PERSON – as something the buyer has a ‘right’ to ‘own’ and treat as their personal OBJECT to do with what they want. That’s how business/ contract law works in this culture. You are right to point out that it is horribly wrong. You are also right, in my opinion, to connect this as the dark underbelly of the fat-shaming oppression that Emily and I focus on here. To me, it also seems to intersect painfully with sexism/ misogyny where it’s AOK to treat women as OBJECTS – merely BODIES that are there for the pleasure or service of paternalistic others who – in their eyes – are doing what is ‘right’ for the world, manaqing everything and everyone in the name of ‘progress’ and telling themselves that they (and their group) are responsible for making everything ‘important’ to human society happen. Like oldhead says a lot here, at least for me, that’s the trauma we take home because so many of us are uncritically buying, wholesale, the bullshit that capitalism (and all the others isms) that mainstream society are selling us.

  • Oldhead, all I can say is that for me, having a model has been tremendously helpful. Because there was none that fit for me at the time, I came up with my own model for how my mind and body function. Coincidentally, the model I came up with on my own for me has a lot in common with what I think the PTM framework is trying to get across. It helps me make sense of why I do what I do, why others do what they do, and how I can respond in ways that make my life and relationships better instead of worse. That’s the utility of a model (and my model) for me. Also, it strikes me that even Buddhists and anarchists have models, which strike me as being a lot like maps. And, yes, I can throw out the model once I get to the destination I want to arrive at. But for as long as I’m still floundering in the wilderness, there’s nothing like knowing that I have a decent map of the territory to give me hope that it will possible, somehow, eventually, to find my way.

  • What you said resonates with me Oldhead. Our very humanity is under attack every day. I only wish that getting that and supporting each other around this actually were a ‘no-brainer.’ It may be for some people somewhere, but I haven’t found them very easy to find. Given that, I consciousness-raise. Even more, try to create spaces to talk about it, because it’s distressing to me and I need to find others (like you) who feel distressed about it too and are willing to own that.

  • YESSSSS! I couldn’t agree more. What I’m proposing is not intended as a standalone theory. It is intended as a complement to culturally-aware, social justice and trauma-informed paradigms like the The Power Threat Meaning framework (Johnstone et al. 2018); The Social Justice Model of Fundamental Human Needs (Knutson, 2016), and Intentional Peer Support (Mead 2008). I wrote this essay to support these approaches, not contradict them! In particular, I wanted to address a question left somewhat open by Johnstone et al. and Mead – that is: how the normal physiological responses operating in human minds and bodies are consistent with – and actually support – the frameworks they propose (and which Johnstone et al. have so meticulously supported and convincingly argued with existing research).

    For more info on what I believe to be the much fuller picture that the stress model should be interpreted from and applied to, please see the following:

    Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. Leicester: British Psychological Society, https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework,

    Knutson, S. (2016). Einstein, Social Justice and the New Relativity, https://www.madinamerica.com/2016/02/einstein-social-justice-new-relativity/).

    Mead, S. (2008). Intentional Peer Support: An Alternative Approach, http://www.intentionalpeersupport.org/product/intentional-peer-support-an-alternative-approach/).

  • Thank you for making the distinction that you do Samuel. You articulated so beautifully what I hope others might appreciate about a different way of approaching human biology. For me, the stress approach has the potential to be a great leveler. What I believe we are up against here is not really ‘mental illness’ at all. It’s the human condition – and what happens in human minds and bodies – when we care deeply about something or have something unimaginably awful happen – and then are unable to find or access meaningful outlets or ways of resolving it in our known world. This, for me, is not a failure of biology or a question for medicine. Rather, it reflects the poverty of our relationships in contemporary culture. It is deeply painful to me to know – and have personally experienced the transformative power of human connection and relationship in my deepest, darkest hours – and still see so little attention given to the idea of ordinary human beings as a crucial resource for each other in times of intensity or distress.

  • Yes Rachel! Please do write that piece! That kind of consciousness raising about the potential harms from drug-based approaches is SO essential. It’s part of my story as well, though in far subtler ways than for many people. I didn’t ‘go manic’ from the drugs (I wasn’t on them that first time) – it was the anxiety that put me over edge (I believe). But a few years later, after some time on SSRIs, I ended up with a body I no longer recognized as the same one I had had for the first 35 years of my life – and that (I believe) was fundamentally changed for the worse by SSRI exposure. That’s a different part of my story that I hope to write about in another piece. If you want a preview glimpse (not a very well written one – just some notes I’m working with for the moment), you can find it here: https://peerlyhuman.blogspot.com/2018/03/reality-in-nutshell-how-human-stress.html

  • Thank you so much Marion – yeah – I’m a real Sapolsky fan. Really glad you shared about your work with the human givens approach. I wasn’t aware of it and it fits so nicely with both the Power Threat Meaning Framework that the British Psychological Society has just released (https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework), as well as my own efforts to connect basic human needs (human rights) with mental well being in a theory I’ve been calling the Social Justice Theory of Fundamental Human Needs. See Einstein, Social Justice and the New Relativity, https://www.madinamerica.com/2016/02/einstein-social-justice-new-relativity/.

  • What a great story Pauline. I love how you reframed the meaning and got a different outcome. This fits so well with what Lucy Johnstone et al. have been positing in the Power Threat Meaning Paradigm (https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework), and illustrates the potential impact of a simple shift in perspective. I think the seasonal question is a great one. I notice changes in that myself. Sometimes I’m tempted to see this as purely ‘biological’ but I also notice that the seasonal changes have different subjective meanings for me – like fall means winter is coming, so get prepared for a longass haul, and spring means relief from dark times and being cooped up inside – and also less energy that my body has to expend just keeping my internal organs warm. That’s all I’ve got so far – anyone else…?

  • This a fair criticism, Dr. Kelmenson. Given how this essay is written, I make it sound like I’m only interested in biology. It may help to know that the stress model proposed here is not intended as a standalone theory. It is intended as a complement to culturally-aware, social justice and trauma-informed paradigms like the The Power Threat Meaning framework (Johnstone et al. 2018); The Social Justice Model of Fundamental Human Needs (Knutson, 2016), and Intentional Peer Support (Mead 2008). The purpose of this essay is to address a question left somewhat open by Johnstone et al. – that is: how normal the physiological responses operating in human minds and bodies are consistent with – and actually support – the framework that Johnstone et al. have so beautifully documented in their work.

    Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. Leicester: British Psychological Society, https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework,

    Knutson, S. (2016). Einstein, Social Justice and the New Relativity, https://www.madinamerica.com/2016/02/einstein-social-justice-new-relativity/).

    Mead, S. (2008). Intentional Peer Support: An Alternative Approach, http://www.intentionalpeersupport.org/product/intentional-peer-support-an-alternative-approach/).

  • This a fair criticism, Dr. Kelmenson. Given how this essay is written, I make it sound like I’m only interested in biology. In fact, nothing could be further from the truth. The stress model proposed here is not intended as a standalone theory. It is intended as a complement to culturally-aware, social justice and trauma-informed paradigms like the The Power Threat Meaning framework (Johnstone et al. 2018); The Social Justice Model of Fundamental Human Needs, (Knutson, 2016) and Intentional Peer Support (Mead 2008). The history is that I have been working on the Social Justice Model of Basic Human Needs for the past 6 years, which talks about how mental well-being is inextricably intertwined with fear and insecurity human needs and social justice considerations. My work drew heavily on theories proposed by Shery Mead in her work on Intentional Peer Support two decades ago. Both models are very similar to (and thus validate) what Lucy Johnstone et al. (2018) of the British Psychological Society independently proposed a couple months ago in the Power Threat Meaning Framework. With the work of Johnstone et al. firmly establishing the relationship between mental well being and considerations of power, threat, meaning and social and social justice considerations, I was then free to focus on the one aspect of my model that the work of Johnstone et al. did not address – that is: how normal physiological responses operating in human minds and bodies are consistent with – and actually support – the framework that Johnstone et al. so beautifully documented in their work.

    Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018). The Power Threat Meaning Framework: Towards the identification of patterns in
    emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative
    to functional psychiatric diagnosis. Leicester: British Psychological Society, https://www.bps.org.uk/news-and-policy/introducing-power-threat-meaning-framework,
    Knutson, S. (2016). Einstein, Social Justice and the New Relativity, https://www.madinamerica.com/2016/02/einstein-social-justice-new-relativity/). I’ve been working on a Social Justice Model of Basic Human Needs for the past 6 years.
    Mead, S. (2008). Intentional Peer Support: An Alternative Approach, http://www.intentionalpeersupport.org/product/intentional-peer-support-an-alternative-approach/).

    The model is very similar to what Lucy Johnstone et al. of the British Psychological Society recently proposed in the Power Threat Meaning Framework. Which is very similar to what Shery Mead proposed in Intentional Peer Support nearly 2 decades ago.

  • Flachra – yes, I so relate. I get so embarrassed by how self-centered and self-focused I become in high-stakes, high-stress frames of mind. And yeah, I suspect SSRI’s messed up my stress response big time for the worse. I share your goal of dropping my defensiveness. Grateful you are out there working on it too. In the end, I think it’s necessary – not just for those of us with formal labels – but for any of us who would like to see a kinder, more just, more honest world.

  • Great points Frank! Yes, really agree that we should get out of the ‘problem people industries.’ Do think that our society could benefit greatly from offering a safety net – especially economic, but also social in terms of the kind of human support where people listen to each other deeply and have no other agenda than supporting someone to make sense of their experience in a way that fits for them. My experience has been that the lack of either of those greatly raised the stakes for me and for my relationships with others as well.

  • You make so many great points Frank – Points to the need for there to be many voices to really flesh out these issues and how to best advance our concerns. Especially like your points that the no treatment is a perfectly respectable (in fact evidence-based if you read Whitaker) option, as well as the idea that alternatives would not be alternatives if there were no force.

  • Hi bcharris – I’d actually like to largely get rid of jails and institutions – or at least radically transform how we see them and what we do that. It turns out that not only 90% of mental health clients are trauma survivors, but also 90% of substance users, ‘so-called ‘criminals’ and folks wi housing issues. It seems to me that these are social justice issues that require radical reform, including care and attention to human needs and quality of living all around

  • Hi Kate – I guess I need to speak from my experiences about our interactions on this blog. I experience your comments as dismissive, hurtful and unwilling to listen. The way you are interacting with me – and the way I experience you are interacting with others who are trying to share their actual lived experiences here – are literally the kind of interactions that made me ill. I can’t imagine what it must be like for your daughter to try to recover and have someone who treats her experience like you are treating ours so close to her. That being said, I won’t speak for her, but I will speak from what I know about myself of my own experience with the kinds of interactions we are having here:

    If my family had treated my truth and my experiences the way you are treating me and others on this blog, one of 2 things would have happened:

    1. I would have listened to them out of a desperate need for their love and acceptance and become a permanent part of the mental illness system. Given the statistics, by now I would be living in a group home or institution and facing the serious health consequences of long-term, heavy duty neuroleptic use (if I were not already dead from this); or

    2. I would have shut them out and ceased contact in order to recover and preserve my own sanity. They would no longer be a part of my life and I would no longer be a part of theirs.

    On the other hand, there is a way that I am grateful for your particpation in this blog. I have long been confused as to why so many of the survivors I know literally hate NAMI, TAC and the families who belong to them. I know many sincere, caring and helpful family members, so it was hard for me to understand why others I know in the survivor movement literally believe that these groups – and the people in them – represent evil incarnate. However, if I project my experience of interacting with you here – including the way I experience the truth of my life that I have worked so hard to express here in a clear, comprehensible fashion – as being dissected, dismissed, avoided, disregarded, tossed aside and even turned against me – and then project living with the relational effects of that long-term – I now feel like I get a glimpse of where those strong feelings come from in my friends.

    At the same time, in my heart of hearts, this is not my view. I actually believe that all experiences – and even ones that at first blush appear confusing, extreme or ill-intended – come from an essentially good human core. I see them as part and parcel of the difficult choices that vulnerable human beings with limited options see themselves as needing to make in order to survive. Once a certain level of safety is established for all concerned, however, these same experiences can simply become grist for the mill – something that people of conscience and good will can use to make sense of our humanity. In a word, we can turn the ‘evil’ to ‘good’ and use our honest differences and misunderstandings to grapple with the challenging contradictions of being human on deeper and more nuanced levels.

    For my part, I’m more than happy to attempt to do that here if I get the sense from you that there is sincere interest and that a sincere effort will be made to understand life experiences that are different from your own.

    On the other hand, if I don’t get that sense from you, I’ll do what I would need to do with anyone who I experience as toxic to my psyche and not interested in changing that: I’ll refuse to acknowledge or engage with your comments and, instead invest my energy in efforts I find more productive – Like the hard work of creating relationships worth having and a world worth living in.

  • Hi Kate – I’m guessing you care a lot about these issues – and for good reason – or you wouldn’t be posting so much here. At the same time, I remain really curious about who are you speaking for. Are you saying that you, personally, can’t recover and believe that you will need psychiatrists and meds for the rest of your life?

    If so, I’d highly recommend that you read the work of Robert Whitaker, who’s work inspired this blog. I’d also recommend that you read the reports of the British Psychological Society that call much of what you are saying into question. I’d also recommend that you look into the Open Dialogue Approach from Lapland Finland and the Hearing Voices approach, which is now international. All of those resources would suggest that you have much to hope for. So would the numerous consumer-developed approaches that are listed in this resource: http://right2bu.blogspot.com/2015/11/federal-minimum-standards-for-community.html

    If, on the other hand, you are writing on behalf of someone you love, then I’d still recommend that you read these works. The important thing is NOT to give up hope. So many of us who were written off as hopeless by the medical model have been able to recover lives of meaning and value to ourselves, families and communities. Moreover, for some of us, that kind of recovery was able to happen even though we had experienced decades of non-success with conventional treatments.

    Equally important, for a lot of us, that hope – as well as our awareness that there were new possibilities to try – came from people around us who continued to believe in us and look for answers long after we had given up ourselves for dead. Often they did this despite the current system insisting that there was nothing – absolutely nothing (besides what the medical model was offering) — that could be done for us. In effect, these professional ‘helpers’ told our loved ones to write us off and get on with life.

    A deep thanks and a very low bow to all of those courageous family members and friends who flat out refused. You continued to believe in us and hope against the odds. You continued to stand up to a broken system that called you naive, foolish or even crazy for daring to think otherwise.

    Want to talk more about what is possible – as well why it’s both believable and achievable by many, many people who currently are falling through – not the cracks – but the gaping holes that are not even close to being address by the medical model system? Call me – 802-279-3876.

  • Hi Kate – Curious about your comments. Can you please clarify? Are you speaking as a person with lived experience who has had access to these kinds of resources during a time of personal distress and found that they did not help? Are you someone who personally found drugs, seclusion, restraint, segregation and incarceration to be a really helpful and productive part of your personal healing process? Are you someone who has personally escaped the health and social complications (diabetes, obesity, congestive heart failure, inability to work and function) after experiencing full-on the ‘best’ the medical model has to offer? If not, it would be great to hear here from all those folks you say that you personally know of who are currently begging for the medical model, only the medical model, and more of the medical model after first having been provided those simple necessities of live that so many of us who have been there can say from actual experience would have helped a lot more. Ironically, you seem to accuse us of wanting ‘welfare’ and ‘handouts’ in our hour of greatest need. That would be a fair criticism if it were not for the ‘welfare’ and ‘handouts’ that are being paid daily by workers and taxpayers to support a for-profit pharmaceutical and healthcare monopoly that people in distress (or their families) have actually PRE-PAID for by insurance / tax dollars – but yet offers them – in their darkest hours – little of what they actually want, need or find useful. Indeed, what is offered in the guise of healthcare has so little utility to most actual end users that these ‘services’ could never survive – dollar for dollar – in a truly free market where people were given equivalent amounts of money to what we are already spending, ALONG WITH the freedom to choose how to spend it in order to create the most health and wellbeing for own needs. The research that has been done suggests that offering people this option (‘self-directed care’) gets better outcomes and is just as cost-effective. But for the stranglehold of big business interests -effectively corporate welfare – this latter system would be a no-brainer.

  • Dear Tired Mother – So sorry for what you and your family have endured. Thanks for the time, effort and energy you so clearly have put into trying to find a better way. Really appreciate you reading this piece and trying to understand the perspectives of those of us who have a strong bias against the current system. Like many of us, I have a lot of opinions about how I would like to change things if someone gave me a magic wand. My basic analysis of what is/ has gone wrong is stated in the following blog, http://right2bu.blogspot.com/ A couple pieces you may find most useful to start with are

    1. Federal Minimum Standards for Community Development, http://right2bu.blogspot.com/2015/11/federal-minimum-standards-for-community.html

    2. The ‘Helping Families in Mental Health Crisis Act’ Doesn’t (still a draft in progress but with some useful points to consider), http://right2bu.blogspot.com/2015/11/the-helping-families-in-mental-health.html

    3. Recovering Humanity in Mental Health Policy, http://right2bu.blogspot.com/2015/10/recovering-humanity-in-mental-in-mental.html

    4. Human Rights ARE Mental Health, http://right2bu.blogspot.com/2015/10/human-rights-are-mental-health.html

    5. An essay on trauma and the need for trauma-informed appoarches, http://right2bu.blogspot.com/2015/09/reason-2-to-grow-beyond-medical-mindset.html

    6. An essay on the Unaffordable Opportunity Costs of Our Current Treatment As Usual System, http://right2bu.blogspot.com/2015/09/reason-conscience-and-treatment-as-usual.html

    Also happy to talk more by phone – 802-279-3876. I made my own mother extremely tired and miserable too — for years — but we have a pretty great relationship now. We both kept trying despite our frustrations and differences. Over time, and a lot of suffering, we managed to find ways to appreciate and value what each other has been trying to say and offer. At this point, there is a lot of affection and mutual respect. For me – and probably both of us – that makes all the difference in the world.

  • Hi bpdtransformation – thanks for your comments! We’re beginning to create something along the lines of what you mention here: http://right2bu.blogspot.com/ So far it’s mostly just me writing. For the groups -On line: I know of about 30 groups on Facebook, and find more each day. I’m guessing the same is true of Google Plus, though that’s new to me. There’s also a lot at Icarus Project. We’re also starting some online – Virtual Alternatives – eDrop In, e Respite – which you can find more about here. http://right2bu.blogspot.com/2015/11/virtual-drop-in-crisis-respite-weekly.html

    Face to face, almost every state has at least one state level peer organization – the vast majority of which were formed to expand options beyond the medical model. Within States, the are usually several local organizations and/or support groups, founded for the same reason. These include groups for Hearing Voices, Intentional Peer Support, Icarus Project, WRAP, Alternatives to Suicide, MindFreedom as well as numerous generic support groups that affiliated with any major ‘alternative’ philosophy but contain people who are looking for alternatives none the same. You can get a picture of the overall richness and wealth of the peer initiated counter-voice to the medical model -as well as how to access the resources that do exist – here:
    http://right2bu.blogspot.com/2015/11/federal-minimum-standards-for-community.html

    Internationally, there are groups like World Network of Users and Survivors of Psychiatry and Intervoice, as well as numerous local, regional and national groups in nations around the world (WRAP, Icarus & IPS are also internationally known and practiced in group formats).

  • Yes, agreed Julie – you make good points, here. I was hoping it would come across as more of a dance than a jarring departure. But for sure, I wanted to address both audiences. For me the difference is not so much about survivors and non-survivors though. I see us in both groups. For me the relevant distinction is between those of us who find ourselves unable to ‘pass’ for whatever reason and those who are able – for whatever reason – to hold or regain social roles that offer access to social voice – and therefore the power to make a difference.

  • Cat and others – Thank you so much for raising my consciousness on this important issue. I’ll talk with the editors of MIA & see if there is a way to change that language to something less offensive to the arms-bearing survivor community .

    What you are helping me see is that psychiatric survivors and 2nd amendment activists have a tremendous amount in common. To be sure, I’m scared of the power of weapons. But in reality, I don’t trust the government to bear arms any more than I do private citizens. Moreover, I don’t think the solution is gun control. I think the solution is a government and communities that respect and advance the human rights of all. Until we have that, I have to agree with your analysis that citizens being able to bear arms on an equal basis is a great leveler.

    A really great question is how – instead of fighting each other – we can raise consciousness between the firearms and psych survivor advocates and support both movements to ‘get’ each other better and ally around our shared interest in reducing the tendency of those acting under color of law to abuse their power.

    To add a bit of context: the comment I made about ‘gun control’ was inspired by an article by Larry Drain in Hopeworks Community, https://hopeworkscommunity.wordpress.com/2015/09/09/murphy-2/. In that article, Larry reported that, according to his political connections, politicians have been under tremendous pressure to at least appear to something about rising violence – and in particular about the kind of public violence that can result when people have access to firearms. Per Larry’s report, instead of addressing that question directly – and thinking strategically about what is leading to firearms violence and what is needed to effectively reduce – politicians instead decided to attack the rights of ‘the mentally ill’ in order to give the appearance of taking action. I wanted people to be able to make the connection that Murphy started out as a political diversion. But, I agree – and can now see in retrospect – that I should have used different language to do that.

    To take this issue even a bit further – and perhaps further support the connection between the two communities of firearms and survivor advocates: My personal belief is the cause of public firearms violence is not ‘mental illness’ but prolonged, entrenched social exclusion and othering. I thus see public firearms violence as a wake up call – to the public. This wake up call is intended by those who become violence as something in the nature of political speech about important social issues that are in desperate need of public attention and meaningful change.

    Their essential story is this: People who have been othered and treated as outsiders for years, reach a breaking point. They are routinely and matter-of-factly treated like dirt by the communities and social circles where they live. This has been going on so long – and is so much a part of their everyday lives – that they have lost all hope of ever meaningfully participating in the human community. This is true for those in multiple socially labeled groups (‘mentally ill’, homeless, ‘addicts’, ‘offenders’, ‘truants’, ‘welfare’) but also for many who escape the labels and pass under the radar for years.

    Many of us have experienced these kinds of social dynamics at one point in our lives or another – and know what it is like. It is deeply traumatizing and something that no human heart or mind can bear for a sustained period.

    Our natural response to this kind of social trauma is deeply impacted by human biological response to threat of fight, flight, or freeze. That means some of us avoid or hide the pain from ourselves (e.g., addiction, ‘psychosis’). Others freeze (become immobile, paralized unable to act). But some of us, predictably, will rise up and fight. That means we attack the threat as we see it and try to take it down. Ergo, Sandy Hook et al.

    Moreover, if you believe in and understand the biological fight fligh freeze response, you can guarantee this is going to happen – and keep happening – for as long as we continue to ‘other’ people and treat social ‘others’ badly. That’s because the fight response itself is, on the whole, socially adaptive and good for our species. (Nothing that is wrong would ever change in social circles if there were only flighters and freezers. There would be no objection from these responses – so the social status quo would always previal.)

    Suffice it to say, imo, public violence is not essentially an issue of gun control. It is an issue of discrimination, othering and social violence directed at people who are different.

    Moreover, as an American public, we are currently reaping – if not what we deserve – at least the logical consequences of how we have been treating people.

    There is a silver lining in this cloud however. The silver lining is this: Social violence is entirely within our power to change. Moreover, citizens and communities can do this totally without firearms legislation – and in fact without legislation of any kind.

    We simply need to start treating people differently. That means we need to stop ignoring that fact that far too many people are being left out. We need to pay attention, look around us and see who looks most isolated or cut off. From there, we need to take active steps to reach out, get to know the people, offer meaningful conversation and real relationship. We need to actively support people to get meaningfully connected – and to recover the rights and resources that every human being needs in order to live and be well. In a word, we need to support our society to recovery its humanity – and each other to recover our human rights.

  • Thanks for the great article Lauren! People thought tobacco was big, but we ain’t seen nuttin yet! Tobacco ‘only’ sold cancer to willing consumers. In the last few decades, Pharma and psychiatry have managed to quadruple the disability rates and take 25 years off the lives of desperate people in distress. They’re currently laughing all the way to the bank with the American public paying the tab. They’ve managed to do this despite the fact that independent longevity studies give your average person with ‘severe and persistent mental illness’ a 700% higher chance of recovering if they refuse or escape the treatment offered them. I can’t wait til the NAMI Mom’s finally catch on to the fact that they’ve been duped into poisoning their families so some fat corporate cat can buy another yacht. My best guess is that the force of that fury will make Hiroshima seem mild.

  • El – Thank you so incredibly much for sharing your story here! Yes, our cruelty to each other is indeed insane – not just inhumane. The sad reality is that it perpetuates the trauma so many of us are grappling with. Both government and insurance industry research suggest that upwards of 90 percent of us in public mental health, substance use, criminal justice and hard to house settings are survivors of interpersonal violence and / or extreme deprivations of human rights. The provider industry has recognized these studies and called for a nationwide behavioral health response. National Council Magazine (2011:2): Breaking the Silence: Trauma-Informed Behavioral Healthcare), http://www.integration.samhsa.gov/clinical-practice/NC_Mag_Trauma_Web-Email.pdf. Yet, the provider system, as a whole, remains basically unchallenged and unchanged.
    This, truly, is nothing short of collective ‘madness.’ If trauma, inhumanity and deprivations of basic human rights got us dysfunctional by conventional standards, how on earth will more trauma, inhumanity and indifference to human rights make us function any better?

  • This is so great Steve, “I agree with Ted – it starts with working to be the way we need others to be when we’re with each other. Love is not owned by a profession!”
    Plus, also really want to highlight what you said here:
    “What helps people heal is first off getting real with them and stepping out of any power advantage and helping them connect with the idea that their suffering is OK and human and that you accept it and them as they are. There are lots of different tricks and techniques and approaches but none of them are worth crap without the human connection, and once you have that connection, the person seeking help is almost always able to generate a raft of his/her own “tricks” that you might never have thought of.”
    The only code I didn’t break was dating a client. A lot of reporting got left undone, former clients became friends, lived with me, I lent (gave) money, paid bills, visited people at home, helped people move, drove them to work, went to groups together, played bingo, buried a pet, went for coffee, went to weddings, medical appointments, foodbanks, social services, contacted people my clients wanted called even if I couldn’t get a written release right then (and sometime forgot to get it later), shared my own struggles when they seemed relevant, everybody had my home number (almost no one called it). I also made a ton of mistakes (still too embarrassed to share some of those!) – and a ton of apologies — which to a person were graciously accepted (nobody sued me or reported me to the ethics board even though they had a right to and I told them as much).

    lol. That give you an idea…?

  • OMG Ted. You’re so incredibly on point here. The forces for bureaucracy and liability protection are so powerful – I can’t imagine this happening within our lifetimes. My major hope was to plant some seeds that there’s something better out there – and we’re mostly missing the boat at this point in human history.
    I also wanted to make clear that no one needs a degree to do this work – it’s Basic Humanity 101: I take my lived experience and I do my best to learn about what it’s like in someone else’s shoes. Then, I use my imagination to try to understand and share a bit in the experience of what’s going on for them. Rinse, repeat, til we get it right together. The idea is that, with just that basic template for understanding, we call be really helpful to each other as human beings – far more helpful than the helping professions are currently allowing their members to be.
    Moreover, (imo) in so many ways, it’s up to us as a peer/survivor/ ex-patient movement to show the rest of the world what this kind of ‘real humanity’ and ‘real help’ look like. Everyone else is so afraid of us that they run for cover and call 911 at the first sign that someone is in a distressed or intense place. If healing and help are going to happen, it’s up to us to figure it out, lead the way and show that it’s possible. Nobody is going to do this for us because they already think we’re getting the best kind of help there is.
    In many ways, we’re in the same position as gay rights movement was when AIDS hit. If gay people hadn’t risen to the challenge, claimed their own value, loved each other and stood by each other no matter what, in all likelihood, they would have been kicked off the planet as the scum of the earth. Instead, the courage, loyalty and devotion they showed for each other (fiercely, unapologetically, in the face of death) put the rest of the world to shame. They proved to a doubting planet that gays (glbtq) deserved full status in the human race. (Not that anyone should have to go to these lengths, but that does seem to be what it takes as history repeats itself, e.g., India, workers rights, African Americans, women’s rights, …)
    In that regard, I really appreciate you urging us all as a community and as a movement to consider taking up this banner. You’re such a powerful voice and force for activism – both in this country and worldwide. It would be so awesome if activism came embrace some version of radical acceptance for each other – as in: “In our community, there is no other. We don’t care how great our differences are. We don’t care how ‘obnoxious’ or ‘crazy’ or ‘dangerous’ anyone of us is acting. We will find a way to work with each other no matter what. We don’t care what lengths we have to go to. We don’t exclude our own, and we don’t leave our people behind. End of story.”
    This is perhaps the biggest challenge of the modern world. Modern society is invested in othering because they think it’s more efficient to just exclude, other and shame everyone who is inconvenient, gets in the way or slows down the production line. They haven’t even considered whether there’s a better way to do things, and they have very little incentive to do so.
    On the other hand, mad people have every incentive to prove that it can be done differently. We can and should be finding ways to demonstrate that offering each other humanity is far more rewarding, beneficial and, in the end, efficient than exclusion and shame. Our hallmark trait in madness is that we so often tend to be at the extremes of creativity and diversity — both in experiences and behaviors. We also tend to value our own humanity highly – and to feel pretty strongly about our own ‘truth.’ As a movement, that makes for a lot of differences – and also a lot of intense feelings around these differences
    We have to find ways to navigate this challenge relationally. Our differences are a fact of life. Our intensity is a fact of life. Together, these things are killing us as a movement (a fact of life).
    A common denominator seems to be that we all want to be shown humanity by each other. If that’s the case, quite possibly we can bridge the gap by each of us learning to offer it just as much as we want to receive it. It’s not an easy task, but, if we apply ourselves, I’m guessing we can get there together. We’ve already made an amazing start. We have eCPR, Intentional Peer Support, Hearing Voices, Alternatives to Suicide, Icarus groups…. If we work at this and refine these practices as a movement, we’ll not only be at the forefront of transforming ourselves, we’ll be making the change possible that our entire society needs as well.