Thanks Sera for this straightforward and concrete discussion of a crucially important issue. I’ve certainly been guilty of some of these to varying degrees. It’s often not easy for me (and I presume most people) to acknowledge (or even see) the intersection where my (our) own considerable privilege meets work focused on experiences where I’ve (we’ve) experienced marginalization. One doesn’t cancel the other out. I’ve often spoken about the importance of acknowledging heterogeneity, and not speaking for (or from) experiences that are not our own along many dimensions including those specific to this ‘movement:’ ‘distress,’ ‘disability,’ and intensity of system(s) exposure. Of course none of that cancels out or is more fundamental to shaping my own experiences than white male privilege in particular. I suspect each of us has much more difficulty recognizing our own privilege–along any of these dimensions–than our experiences of marginalization or oppression. It’s the nature of privilege that one doesn’t actually ‘have’ to see it. This piece is a great reminder and discussion of some of the specific ways that plays out. Thanks.
I’m following up because my initial comment on your post hasn’t sat well with me. The internet makes it all too easy to engage in a disrespectful manner, or to forget that the person(s) we address are, in fact, persons. So, apologies for the dismissive and combative tone.
Here I aim to clarify the four issues I raised. My intent is to offer insight into my thinking, not to tell you what you think, or to say that you are wrong–except insofar as you attribute positions to me that I do not hold.
The use of the term “straw man” was a poor choice of words. What I meant was, it is difficult to respond to your post because much of it links my original post to positions I don’t hold. For instance, in your follow up you say “You made it clear that all hot button issues should be “decentered” and “debates” about them avoided, and that would necessarily include the use of diagnosis, force, and Electro-shock”
My post called for decentering psychiatric drugs in advocacy efforts. I did not include these other practices in that comment. I see these as each distinct–albeit often linked–practices. I intended my view on diagnosis to be clear in the caveats I offered. It is basically this: they are not valid categories–in the scientific sense of validity-they do not refer to any objectively verifiable physiological processes. I don’t think they ever will, not because there are not biological processes (and differences) that are involved in various forms of distress, but because I think the nosology is just crude and sometimes arbitrary.
Psychosocial disability: In your follow up comment you said that because I said it was inaccurate to deny the existence of “more enduring psychosocial disabilities,” that this means I endorse “Biological psychiatry.”
Actually, this is not what I meant. I intend “disability” here more in terms of what the broader disability rights movement means by disability. For instance, many deaf people do not think of the experience of being deaf as a medical problem. It’s a celebrated difference with a culture and history. In these contexts, “disability” refers to socioenvironmental barriers that prevent access/inclusion for persons whose bodies/abilities are not “normative.”
This is how I see “madness.” Yes, scientific understanding of the relationship between biology and subjectivity (consciousness) is not remotely understood. But I do think the evidence is quite strong that the nervous system is deeply implicated in subjectivity. Genetics as well as environmental exposures are clearly established in shaping the structures and functions of the human body. Now, am I a biological reductionist? No. First of all, experience shapes the structures of the brain. It’s been demonstrated that directed activity of the “mind”-if you will-changes the brain. It’s quite extraordinary if you think about it. Trauma, for instance, can have lasting impacts on brain structure and function. In fact, there is evidence that trauma actually alters gene expression in subsequent generations. So no, I do not think the body is supreme. I think ‘body’ and ‘mind’ are coextensive.
But even more fundamentally, I take an anthropological view on theories of subjectivity and medicine. This is to say that the question of whether a theory is ‘true’ cannot be established apart from the ‘conditions of possibility’ that make it true, in the Foucauldian rather than the Kantian sense. From this vantage point, talk of genetics, for instance, has already parsed the world in a particular way that belongs to a specific socioculturally situated and historical context. So on a deeper level, I actually don’t privilege this way of framing the world-which is not neutral or ‘objective’-above other less privileged ways of viewing the world or experience. I am spiritual person, for instance. I experience spiritual forces and I regard them as real and quite apart from and in no need of ‘scientific’ explanations.
But a consequence of taking an anthropological view seriously is this: people make sense of their experience partly from the materials–the words, the systems of belief etc.–that are given-but people also have agency and fashion often quite distinctive and unique meanings from otherwise familiar material. So the question of making use of a diagnostic term transcends it’s validity, actually. People make use of these terms. I’m not going to position myself as somehow knowing how someone else should understand their own experience, which words are the right ones. Take “extreme states,” for instance. Does this refer to something specific? Or is it a particular way of organizing a set of experiences within certain subcultures? Does it mean the same thing to me as it does to each and every person on MiA? I rather doubt it. What about “emotional distress?” Why do some militate against the idea of disordered thought, and leave emotional distress unquestioned? On what nonarbitary grounds do we even separate thought from emotion?
So yes, I characterized the POC Photo Project as a bright spot because the young woman whose project that is–and it is her own project–is organizing mental health activism in communities of color. She has an oppression framework. I’m not going to legislate the terms that she or anyone chooses to describe their own experience. I’m not going to assume to know better than they do what their experience is or means or what to call it.
Is there a massive power imbalance when it comes to psychiatry? Yes. Absolutely there is. Ought we to consider this when thinking about the use of diagnostic labels? Yes, we should. But I also think respecting, actually respecting someone’s agency, narrative and self descriptions comes first.
The “identity politics card.” To an extent, I agree with you here. You certainly have a stake in these matters just as person on this planet. You have ideas and experiences and a point of view that I would, in general, support your right to express. But social movements have always staked claim to “situated knowledge.” In the disability rights movement and the survivor movement we’ve often said “nothing about us without us.” Malcolm X surely made a similar claim. So I referenced my own experience not to silence you. I was admittedly upset by what I felt was a mischaracterization of what I had written. I was even more upset by the description of the young people from the POC Photo Project whose right to name their own experiences I would defend, and I would not presume to understand without actually talking with them.
In any case, apologies again for my initial glib response. I do hope this comment further clarifies where I’m coming from (and where I’m not.)
I don’t have a ton of time this morning, but here are some problems with what you wrote.
1. This is a straw man argument. You grossly mischaracterized my position.
You wrote i was arguing for an ” accommodation with psychiatry (and other advocacy groups), and calls for a strategic academic and legislative shift away from targeting the damage caused by psychiatric drugs and DSM diagnoses/labeling (and I am assuming also away from targeting forced drugging and hospitalization and Electro-shock)”
I called for a decentering of psychiatric drugs in advocacy efforts, not a cease on efforts in this area. To the extent that I addressed diagnosis and force, my comments were apposed. But it’s certainly easier to set up a straw man than engage in a productive way with ideas one disagrees with. My blog addressed itself to a broader view of oppression, and what I see as a more effective approach.
2. I find your argument from analogy to Malcolm X and civil rights very problematic. It is tricky territory indeed to discuss a marginalized community of which you are not a member in terms of critiquing their (our) “inferiority complex” or “deeply ingrained way of thinking.” To discuss the People of Color Mental Illness Photo Project in this fashion is offensive.
3. I’m not sure quite what you mean by science in this piece. It seems to refer plainly to ideas you already agree with.
4. Nowhere in your bio do you discuss yourself being a survivor. I’ve lived the things about which I wrote.
Thanks for the generous reading Emmeline. I agree with you that there needs to be much focus on harms and alternatives. I think the attack on PAIMI in the Murphy Bill is one major concern when it comes to harms. Perhaps paradoxically, which I don’t think I made clear in the blog, is that I actually think the “loosening” of polarizations and somewhat deemphaizing the drugs–in advocacy efforts–might actually serve to make alternatives, and less drug centered approaches more palatable anyway.
In any case, thanks for reading and I always appreciate your thoughtfulness.
I’ve read bits about your own story over time, and we have, perhaps, experienced some similar things, albeit across different generations and the changes that have gone along with this. Other things that you survived, I did not experience, and no doubt we make meaning of our experiences in different ways besides.
I agree with you that the problems are quite serious and widespread. While I realize that we do see certain things differently, I also think think there is some common ground, and much of that common ground truly is grounded in ‘lived experience’ insofar as having a sense of understanding not just the more egregious harms, but also the more subtle yet damaging ways that much of these things you write about operate.
Embedded in what I wrote above is, or at least I hoped there would be, the pointing out that all manner of inequalities create environments where ‘system’s intervene in often quite harmful ways. When we focus all the attention on the interventions, and less on that environmental context, we’re missing a huge part of how this works.
I’d like to see more work on some fairly basic things like housing, education, quality holistic health care, addressing social inequiteies, respectful and creative psychosocial approaches, strengthening community…
Yes. Thanks for reading and for taking the time to engage in the discussion here. I’t s bit tricky to figure the way comments get sorted here, but I am reading everyones comments with interest.
Thanks for this response. I appreciate your perspective. I certainly don’t intend to diminish the survivor experience-that is also a large part of my own experience, after all. I mean something very specific by anti-psychiatry-and certainly not either Laing or Foucault, both of whom rejected that label.
Maybe we’ll figure out where the disagreement shades into agreement one of these days.
I agree in large measure about the dominance of the biomedical model. I also didn’t emphasize the degree to which some politicians in these discussions are seriously mischaracterizing issues and/or emphasizing things grossly out of balance-the focus violence, the bizarre rant about the drug prevention website, the airtime spent on a morning warm up at Alternatives at a previous hearing and on.
My presumed audience is people who are already critical of these things-and I think the comments in this thread illustrate this.
I agree that there are much more powerful forces at work, and I do think there is truth in the idea that sometimes certain framing of things that seems ‘extreme’ can help move things along at times. On the other hand, access to participation in politics-and advocacy-varies considerably along the same issues I’m raising here. I think there is a responsibility for those of us with greater access-myself included-to pay attention to these issues.
Thanks for reading Sandy! I totally agree there is a lot more at stake in all those issues and it’s easy to miss those things, and I think we often forget how difficult things can sometimes be where the rubber meets the road. I think you’re posts often provide just this kind of context.
Thanks Melodee, I’m glad these points came through my admittedly all too academic prose. I am somewhat optimistic actually about some developments in focusing on diversity, privilege, intersectional oppression and the like, but we do need to do more.
You bring up some interesting points, some of which I agree with to varying degrees. In terms of context, I am writing here for MiA where critical perspectives on medication dominate the conversation, so to the extent that I glossed certain issues, I was assuming, even responding to, an audience I assumed was already familiar with much of this.
Nevertheless, thanks for this detailed and thoughtful response which adds some thoughtful perspective on these issues.
best.
timothy
Thanks for reading. I wasn’t arguing for ‘socialism through ssi/ssdi’ payments, or anywhere make the claim that I think drugs are the solution to socioeconomic problems or say ‘a drugged nation is a more healthy nation.’
That’s not at all the argument I’m making.
But then, I also pretty fundamentally disagree with your characterization’s here as in “problem people,” or it being about “how you live your life.”
You do raise some important points, in general, in terms of how law and policy can have unintended affects.
Thanks so much for reading. I have no doubt you are far more familiar with a lot of these areas I did not emphasize, like nutrition and CAM approaches. I saw a great presentation by a nutrition researcher at a NAMI conference some years back. Great stuff. Some of the early psychosis programs are bringing in nutrition and exercise components too.
Obviously you’re work has been groundbreaking in these areas and I’m greatful for it and all the hard work you do!
You really bring out a lot of great points here, particularly in terms of the way ‘care’ plays out in different settings. Your comment really provides further context and experience to think about these issues so thanks so much for taking the time to write this and for sharing it.
Thanks for reading. I did not intend the comments about anti-psychiatry as a cheap shot, I hoped to reference ideas and not persons. That being said, I do recognize there is a wide range of views.
I agree that the (bio)’medical model’ has much more power behind it than do alternatives. I also agree about the widespread problem of poor ‘care’-uncareful polypharmacy etc.
My thinking in terms of emphasizing some issues and not others, was that I was writing for an audience on MiA that is already critical and where there are many other articles that address the issues you rightly raise.
Thanks for reading. I agree in large measure about you comment regarding the “style” of this piece. I’m so steeped in that literature these days it’s actually easier for me to make these points in that style than in more plain language. I do hope to get better at that. Thank’s for wading through the prose and I’m glad you found something worthwhile!
I might have found better words than “dogmatic anti-psychiatry” positions. On the other hand, I do think there is a tendency-on all sides-among many to be uncritical towards ideas one already agrees with, while immediately rejecting ideas one links to “the other side.”
I suspect we might see some of these issues differently. But that’s ok. I’m sure there’s also some things about which we agree.
I absolutely agree about the issue you bring up about food production and availability being an important part of this.
I’m familiar with the studies you bring up, but I do interpret them differently, in some respects, than does Whitaker. Briefly, Wunderink does find evidence in an RCT that a ‘discontinuation’ strategy in the initial period of treatment led to better ‘functional’ recovery than did treatment as usual. However, most participants-even in the discontinuation group where providers were actively working to taper the drugs-remained on the medication, albeit at a lower dose. So while yes, the study does find evidence that treatment as usual is associated with poorer functional outcomes, too a large degree it’s about dose.
As to Harrow and similar studies, the big problem is that these are naturalistic studies. Whitaker see’s that as much less of a problem than I do, or indeed what most researchers would.
Very thoughtful and detailed post. The anecdote about the dissociation panel struggling to define it’s topic alone is quite interesting, if not surprising. There’s a lot else here that’s thought provoking. I appreciated the engagement with psychosocial as well as genetic and neurobiological research.
Thanks for writing.
I certainly agree trauma-individual, interpersonal and cultural- plays a role in a wicked lot of distress.
There’s quite a lot of research on this even when focusing only on psychosis.
On the other hand, if your claim is psychosis is always a result of trauma, that it’s best reframed as dissociation, I don’t agree. I do think this is one crucial avenue and I’m glad you are exploring it. But I think we need to attend to the many ways in which these states arise, are experienced, addressed and in many cases resolved: The heterogeneity of etiology, phenomenology, effective care and course.
I try to avoid comment threads on this site, but have to chime it here. I agree with Bob Whitaker that Sandy is one of the most thoughtful, knowledgeable and nuanced writers on this site. I also find this particular piece rather unhelpful.
I’ve lived most of my life with episodic psychosis, schizophrenia spectrum. Before that I lived with my mom who has been profoundly disabled by these issues, and yes, also by harmful practices in the system.
I got involved in critical mental health activism more than a decade ago. I’ve gotten more and more disillusioned by this, and this blog post is a great example of what I find so frustrating.
In addition to living with psychosis myself, I’ve experimented with many different approaches. I’m also a therapist myself, and a researcher working towards my PhD. I read the theoretical literature, the psychoanalytic literature, the CBT literature, psychological anthropology, philosophy of psychiatry…and I do so with the same critical rigor as I read the biomedical psychiatric literature.
I’m a scientist. A social scientist. I have training in research methods, quanitative, qualitative and ethnographic. I’m obsessed with psychosis, for obvious reasons, and I’ve read everything I can find on the subject from Lacan and Perry, to Bentall and Turkington, Andreasen and Torrey and all shades between.
As a scientist, what I see is a lot of competing ideas, lots of theories, some things that work for some and not for others…nobody can say what psychosis is, or how or whether it might be overcome in any given instance. Whether by D2 dopamine receptors or spiritual transformation. I personally thing psychosis doesn’t refer to one thing. It refers to thousands of different things, with many different eiteologies.
Daniel, as a person who lives with psychosis, and has been through the system, and is now a researcher…I don’t personally find your opinions, or at least this way of expressing them, any less paternalistic or “unscientific” than the straw man you are setting up as “biological psychiatry.”
As far as I know, you don’t experience psychosis yourself, and yet you seem so set on explaining to everyone how they should think of the experience? Viewing it as a transformative experience is no less culturally determined as is viewing it as “biological.” This might be helpful to some, and not others.
I’m critical of the standard of care in psychiatry myself. The drugs have serious risks and are grossly overprescribed. But the research on their utility is far more complex and nuanced than what you describe. I wish a site like MiA could find a way to not be so black and white.
In the context of a discussion about abuse, someone responds by talking about how they would like “ghetto justice” or “kick his face in front of his wife,” an act that would almost certainly be extremely traumatic also for the persons wife-and you respond to these comments by applauding their mention of “right” politics?
Yes. I consider that a (not so tacit) endorsement.
Again, it wasn’t the psychiatrists who intervened in this situation. That is a distortion of the Globe story you posted.
Further, I think the “right” politics, the abusive comments, and the one sided “distortion” of complicated issues is endemic to Mad in America in general. Again, not helping “our” cause.
I also lived in foster care, and sometimes its better than the alternative, plain and simple. Ted, I think you may be jumping to conclusions about the story you’re discussion. It seems the “jury” is still out, and besides, it wasn’t psychiatrists who initially intervened in this case. Child abuse is real, and I don’t think you can say with any certainty that it’s not what is happening here. “Fair and Balanced?”
As to you’re response to the above comments. You offer a plug for Glen Beck, and applaud your commenters for bringing in “right” perspectives, ostensibly including their calls for “kicking teeth in” and “ghetto justice.”
These are some reasons why I think Mad in America might just be doing more harm than good for “our” movement(s).
I’m a survivor myself, and I can relate to the rage, but I really think stuff like this is hurting “our” cause.
Yes, I did say “I cannot really respond” in a different post than the one Sera was responding to. She then, responded to this post by saying I was ‘judging’ someone’s decision to not be ‘out’ on this site, which I was not. My point was really to simply say that I did not want to respond to someone who was attacking me-based on personal information I have made publicly available-while they are anonymous. Thats not a judgment of them. Thats my preference.
As to ‘decency’ as you say, It’s not a matter of decency for me to choose to respond or not respond to people, especially in the context of a comment thread, and especially when there are many many attacks of positions I don’t hold.
But going back to Sera’s original post, arguing on the internet when a framework has not been set so meaningful dialogue can happen is likely fruitless. As appears to largely be the case here.
I don’t think you read my post. I made no judgement about private commenters on this site not being ‘out,’ My comment had to do with people who are already ‘out’ and visible-bloggers on this site etc. who I have had conversations with, or been privy to their conversations with others who share some of the concerns I have expressed and stay quite about those concerns. That is what I am referring to. You and I both know that there are ugly politics behind the scenes. This is what I am referring to. I’d be more than happy to discuss those things publicly if you really want to have that conversation, but I suspect we could find a more appropriate venue. I’m in favor of transparency.
I want to venture a response to this post. You’re graphic description of psychiatric abuse resonates for me. I have experienced similar things.
I will be the first to admit I am not a “perfect even-handed teller” of truth etc. I say things because I’m angry sometimes, or hurt, or ill-informed, or just plain wrong. Everyday. Probably a few times in this thread.
If I have given the impression that my intention-here, on my blog, on twitter, or anywhere else was to discredit your experience of abuse, of distress-then I am sorry.
My point about ‘ongoing’ experiences vs. remitted experiences is a very touchy and complicated issue. I realize this. It leads towards comparisons of suffering that can be discrediting-that at times I have said things that are discrediting-I acknowledge this. It’s really hard to talk about this stuff. Language sucks. So many of us are wounded. But I think it’s really important that we struggle to talk about this stuff still.
It’s not about ‘medication.’ I see it as quite a separate issue, though it becomes entangled in questions of medication. I am extremely skeptical of psychiatric medication. For instance, I agree in very large measure with Robert Whitaker’s conclusions, particularly more recently in response to the Wunderink findings. I take issue with some of how he arrives at those conclusions. These are subtle-but I believe important points.
I certainly do not think anyone should be forced to accept any label they do not-with the best available information-choose. I tend to refer to my experiences as ‘psychosis.’ I’m not a huge fan of that word, but I like bipolar and schizoaffective even less. ‘Extreme states’ isn’t specific enough-for me. So I go with psychosis.
You have posted a whole ton of stuff here. Some of your points I agree with, even if I think they are misapplied to me. Some of your criticism of me is probably valid-it’s worth reflection.
But most of it doesn’t apply to what I believe at all. I can be quoted out of context. I’ve also said stupid things. So be it.
My point about peoples experiences being ‘erased’ is not to suggest that you personally are doing this. It’s a risk-often unintended-that I see as resulting from the way certain positions are framed in a broader, structural sense.
I do find some of what you have said as offensive to me personally. But I can see where you might be offended by some of my statements as well. I hope I’ve clarified some of that.
I do also think your attacks on Nev are very misguided. She is doing more truly beneficial work-and on many different levels-to improve these things than anyone else I know. It kind of takes us back to the original theme of Sera’s post-walking the talk.
Thanks for this response. Today has been busy-as I’m guessing for you-so I missed it in the stream of emails that came in as responses from this blog.
Again, I’m sorry for hijacking your thread. When I posted my original comment, I typed it out hurriedly and definitely was speaking to larger concerns beyond your original post.
Thanks for sharing more about your experience and how that connects to your work and way of identifying. It takes no small measure of courage to put those things out there publicly. But it may be one of the most helpful things-for people to see that we need not keep these things secret; that one can experience them and still live an inspired life.
Language is a problem. English is especially prone to casting things as dichotomies. Even as I critique dichotomies, I often end up instantiating my own dichotomies; also, there are simply no good words to talk about many of the things we are talking about-‘extreme states’ ‘psychosis’ ‘recovery’ ‘peer’ etc. all loaded with baggage we do not necessarily intend.
I do have criticism of “MiA” as a brand, and how it is positioned-in a broad sense. I also have great respect for a number of folks who blog here. I do have criticism of many of the ways Robert Whitaker describes studies and findings, and has allowed others to cite his work in support of even more problematic claims. But I also cited Robert Whitaker’s Boston Globe reporting when I wrote a piece on these issues back in 2003, long before Anatomy.
As to organizing, I did complete a survey. I have looked at the HVM-US website. I was not able to find any information about who-specifically-the individuals were who wrote the charter, who the ‘organizers’ are etc. How decisions are being made etc.
As to ‘professionals,’ my point was not to attack you for charging money for trainings. Trainings cost money. Even with volunteer facilitators one still needs space, electricity, materials etc. Further, I don’t think its wrong for facilitators to be paid. My point was that the line between ‘professional’ and ‘not-professional’ is far blurrier than is often characterized-in my opinion-around here. My point in mentioning that I ‘qualify’ as a professional was not intended to create a hierarchy etc. It was to illustrate this point. Also, I think local capacity building-something you all in WM seem to have done quite well in-should always be prioritized.
It seems clear from this comment thread that the primary concerns I was voicing are not being heard or understood. Many responses seem directed at psychiatry in general for instance, which is not my position at all. I’m sure I could have been more clear. It’s also true that I conflated your original post with a broader concerns on MiA, so I suppose I’m guilty of this same sort of thing. I was responding to broader issues, and with a context that extends beyond this post or even this website. Plus this is, after all, a comment thread.
Certainly anyone is welcome to read my (personal) blog and twitter feed, though these are not a part of any “taxpayer funded” job. You can watch my amateur videos and listen to my bad recordings even, if your so inspired.
I wrote my original post in haste, and didn’t anticipate all of this response-particularly attacks on Nev-by an anonymous poster who dug up a post Nev had taken down-and painstakingly combed through my twitter and blog for quotes etc.
This is the risk we take being ‘out.’
Just like every day when I go to work or school and make no secret of the fact that I experience ‘psychosis’ have been diagnosed with things that scare people etc. I take the risk-in spite of also being human and not enjoying being attacked, especially about such personal things as what’s under discussion here. I take the risk because it’s easier for me than for a lot of other people.
As to my perspectives I’ve shared here: also risky. The fact that I DO think there is a huge difference between a brief ‘psychotic like’ experience and ongoing psychosis, for example. Somehow this is a taboo point to make in ‘c/s/x.’ Yet somehow not taboo for people to suggest that if one continues to experience ‘psychosis,’ its simply because of the choices one makes. This idea needs to be contested forcefully.
On that note-and on the note of taking risks-I actually have had private conversations –with people who write blogs for MiA –who agree with what I’m saying. I’ve heard the sentiment that “if only you knew who agree’s with this” etc.
So, there are more ‘visible’ ‘powerful’ folks in this community who remain silent on these issues. I’ve even invited them directly to offer statements. Silence. except behind the scenes.
So I take the risk. Nev takes the risk. There are others. Somebody has too. With my real name. In full view of my employer, my department faculty…anyone with internet access. It’s a social justice issue. And it’s a social justice issue within movements as well. So we open ourselves up to attacks. So be it. Some will read (have read) what I have to say and recognize a perspective that is absent from a larger audience. Because no, I do not represent anything remotely ‘mainstream.’ hopefully it will encourage others to speak up.
I will say I am very disappointed in people who have a recognizable survivor ‘celebrity’ status who have expressed privately they share some of these concerns, but are afraid to speak publicly. Hopefully some of you are reading this, and if it’s a conversation we have had-yes, I’m talking to you.
And Sera, sorry this ended up a hijack of your original post. I did not plan this. It just happened to be the morning and the blog I was reading when I finally posted here. You’re right-it’s off topic.
Thanks Nev, I think some of the comments in this thread are illustrating the problem. There also seems to be some difficulty in realizing that there are not “2 sides” on these issues. There are many many perspectives. That, of course was one of the points of my original post. One of the other key points was calling attention to the frequent claim everyone with ‘psychosis’ can ‘recover’ if they simply do the ‘right’ thing. Then, if they don’t, it’s there fault. This being what I meant by saying peoples experience of ‘psychosis’ gets erased-meaning the fact that it is a ‘real’ problem that for many continues. Again, very well established in all the longitudinal studies.
This comment illustrates this:
“Some people feel ‘morally blamed’ for not succeeding in mastering their problems without psychiatry’s toxic drugs. I don’t feel this way.”
Succeed in mastering” your problems? Clearly suggests its a simple matter of the person ‘overcoming’ the problems. Goes directly to my original wheelchair analogy.
This same poster-who I can’t really respond to because they aren’t using their name-seems to be attacking “psychiatry” as a proxy for arguing against points I made in my original comment. I’m not a psychiatrist, didn’t promote psychiatry in my original post, and am critical of many psychiatrists as well as the ‘standard of care’ for ‘psychosis’ in US psychiatry. That’s pretty clear on my blog. But anyway, and to another point, it’s not as if psychiatry is monolithic anyway. There are in fact psychiatrists out there using a very cautious and well informed approach to the work they do. At least one of them, Sandy Stiengard, blogs on this website.
Thanks for taking the time to write such a lengthy response. It is absolutely true that my response here is more to broader issues I see with Mad in America in general, and a few affiliated groups that seem to have considerable overlap. So, to the extent that any of these ideas are ‘misapplied’ in this case, I can’t be sure because I don’t really know your perspective either. Either way, my points are ones that need to be discussed.
Perhaps I wasn’t clear enough about ‘professional.’ I don’t work in a capacity where I ‘diagnose’ people. I’m far more interested in research, advocacy and system change-why I’m getting a PhD. I also make it a point to be disclosed. Besides, if one is charging money for a service-like ‘trainings’ or ‘workshops’ etc. about how to ‘help’ others with these sorts of issues, I don’t see that as appreciably different than providing ‘professional’ services really.
On the note of civil rights. I agree. I identify as an oppressed ‘minority’ with respect to these issues. Part of what that involves is representation in my view. On that note, you say you don’t identify as a voice hearer, but you are an organizer for a ‘peer’ based ‘hearing voices’ network? I guess this is an area where I take issue also. I don’t base my identity around having ‘survived’ psychiatry etc. or being labeled-though I have had those experiences. For me, it’s about experiencing psychosis, which is simply not equatable to the ‘ups and downs’ of life for the vast majority of people. To suggest that it is, in my opinion, erases the experience of people who suffer-myself included-and also takes away our legitimate claim to speak and organize based on the ‘authority of experience.’ For non ‘voice hearers’-as you call it-to be leading the organization of these groups, and especially when controlling training, charging money for trainings, lacking in transparency in decision making etc… I guess I don’t see how thats different than ‘professionals.’ Where can I get information about who is organizing the Hearing Voices Movement in the US? is there representation across different regions and perspectives, taking into consideration the sheer size and vast diversity of the US? Who is decided where groups can be held and by whom? Are these people who have experience with hearing voices or psychosis? Ongoing experience rather than brief and remitted experience? These are the sort of more concrete things I wonder about.
I read blogs here on MiA (including yours) occasionally, but have never responded until now. I am sympathetic and allied with many of the views expressed. However, I also disagree with much of what is written on MiA. In this regard, I related to this statement in your post:
“I’m not sure why I get so easily drawn into these battles at times. Sometimes my fingers are typing while my mind is already insisting, ‘Stop! This is pointless!’”
I feel this way now as I write this comment.
I appreciate your work and your efforts, and I expect we might have more common ground than differences of perspective. I want to acknowledge that. But this comment will be addressing what I see as differences, based on reading your blog. I intend what follows in the spirit of dialogue.
Some of the experiences from which I ground my statements:
I’ve been living with ongoing experiences of ‘psychosis’ for more than 20 years, including things that might be categorized as ‘voice hearing,’ as well as many other types of ‘altered states,’ most often experienced as very threatening. I’ve had significant interactions with various types of psychiatric services, spending more than a year of my life incarcerated as a mental patient, including in a state hospital. I’ve carried a number of diagnoses including both bipolar with psychosis, and schizophrenia spectrum.
I’ve been involved to varying degrees over the years with c/s/x activism, and have tried many different approaches to both framing my ‘extreme state’/’psychotic’ experiences, and navigating them in my life. I’ve used acupuncture, I’ve attended a ‘Hearing Voices’ group, intentional mutual support, as well as medication and various types of ‘professional’ psychosocial approaches/frameworks.
In general, my experiences of ‘psychosis’ remain basically the same as they always have been, regardless of these efforts. My ability to ‘cope’ with them and live my life is what has improved.
Also, in the last few years I completed a masters degree, qualifying me as a ‘mental health professional,’ and I am currently working on a doctorate.
When I read MiA–and it often seems extremely polarizing–things appear framed in terms of ‘a system’ or ‘professionals’ vs. ‘ourselves’ as you say in this post. In my experience, the views are way more diverse than that.
You say:
“That change will happen as more professionals shift how they work and talk about those shifts with their colleagues, but also because more people will be adequately supported to move through the parts of their experience that are negative and better integrate their worlds.”
So would I qualify as a ‘professional’ who needs this training you talk about so I can better understand how to work with people who have ‘anomalous experiences’ ? Or do I qualify as someone who-on the basis of lived experience- has special insight into these things, or needs to be supported to ‘integrate’ my worlds etc?
What about ‘recovery?’ I personally think it is problematic to emphasize ‘full recovery’ as in many of the public ‘heroic survivor narratives’-as sociologist Linda Morrison has put it-without emphasizing that many people-myself included-continue to experience ongoing distressing experiences of ‘psychosis’-regardless of any type of intervention, ‘Hearing Voices’ groups or otherwise. I think it can be problematic when individuals speak –on the basis of relatively brief or circumscribed experiences–about what those of us with enduring and ongoing difficulties need to do in order to ‘recover.’ Clearly these experienced are poorly understood ‘scientifically’ and ‘culturally,’ but what we do know seems to point to their being ‘caused’ by many different things and leading to many different outcomes. The longitudinal studies that are frequently-and problematically-cited as evidence that neuroleptics ‘cause’ psychosis, point to this heterogeneity. Some people simply continue to struggle. It’s been a consistent finding. For me personally, this is why it has been important to focus on how to live the life I want in spite of my different way of experiencing the world (ie. ‘struggles’)
Here is a metaphor, not intended to smuggle in a medical framework, but ask yourself: would it be reasonable for a person who recovered from being wheelchair bound with a broken leg to speak to the experience of someone wheelchair bound due to paraplegia? To what extent could they really understand that experience, or make recommendations about how the person might ‘recover?’
Also, a message I often see on this website-and related spaces-is that people with lived experience need to be listened to, should be leaders in providing support and care to struggling others. I couldn’t agree more. So it confuses me when the perspective of a great many folks who have these experiences are discredited–almost as if they are brainwashed–because they take medication, identify with a diagnosis etc. I realize that powerful ideological forces can both constrain and produce experience and identity-for all us, no one is immune.
But it also strikes me as paternalistic to assume to know what is best for so many people, when these matters are so context dependant and unique. Each person is an expert on themselves? I simply don’t think-for me personally-that ‘dialoguing with voices,’ for example-is helpful. I’ve tried it. I do wholeheartedly believe it when individuals say it is helpful for them however.
Also, on the topic of context, I think it crucially important to always bring in issues of intersectional oppression and privilege. When we look at all the data on the vastly disproportionate social inequities (poverty, often unsafe neighborhoods with limited access to healthy food etc., low literacy, unequal access to employment or education and on and on) faced by community mental health service users, it becomes problematic-in my opinion-to focus too much on approaches for ‘anomalous experience’-without robustly discussing and addressing these issues as well. This is especially true to the extent that any of us speaking about these issues–myself included–have privilege or access to resources that many many others simply don’t.
To what extent can I explain to someone else–on the basis that I have learned to live with ‘psychosis’ well enough to be a successful PhD student–what will work for them, when they might be dealing with all kinds of additional difficulties I simply haven’t?
You said this about recent exchanges on this topic on Huffington Post.
“Some of it, of course, is eliciting the most typical of responses from those spouting the standard media and system-driven messages offered so freely because they “know it to be true.”
You quoted a really nasty comment from HP that seemed to me to be from a ‘troll.’ I guess I think it would have been far more generative to respond instead to Allen Frances’ HP post. I certainly don’t agree with all that he says, but it seemed there was much room for common ground. I worry that quoting the troll comment in the context of speaking about ‘the standard media and system-driven messages’ promotes a polarized dichotomy when-at least in my experience and studies-the context is anything but dichotomous-there are many many different perspectives.
That takes us to the issue of dialogue. You say this about ‘talking to those with whom we disagree.’
“And talking to those with whom we disagree can sometimes be productive. On occasion, it may actually result in change. Additionally, as more of us speak up with views that counter the status quo, those who remain stuck in the box of old perspectives might at least begin to get the idea that the world outside their box is growing. If nothing else, arguing with those with whom we disagree challenges us to get better at articulating our ideas.”
Would you characterize me-based on all I’ve written here– as ‘stuck in the box of old perspectives?’
Here is what I think about ‘talking to those with whom we disagree.’ The purpose should be mutual understanding and collective knowledge building. If ‘being productive’ simply means changing others ideas or getting better at arguing, that’s not dialogue in my view. We have ourselves to be willing to be wrong, to learn from others. A good place to begin-in my opinion-is realizing that the ‘professional’/ ‘survivor’ (or whatever we want to call it) dichotomy is false. You and I both illustrate this.
Any ‘movement’ that presumes too much to know what’s best for others, isn’t willing to learn or be wrong when presented with conflicting information or experiences, ignores heterogeneity and individual differences, isn’t truly transparent and democratically organized…well, isn’t that just recapitulating the worst of what we want to change?
Thanks Sera for this straightforward and concrete discussion of a crucially important issue. I’ve certainly been guilty of some of these to varying degrees. It’s often not easy for me (and I presume most people) to acknowledge (or even see) the intersection where my (our) own considerable privilege meets work focused on experiences where I’ve (we’ve) experienced marginalization. One doesn’t cancel the other out. I’ve often spoken about the importance of acknowledging heterogeneity, and not speaking for (or from) experiences that are not our own along many dimensions including those specific to this ‘movement:’ ‘distress,’ ‘disability,’ and intensity of system(s) exposure. Of course none of that cancels out or is more fundamental to shaping my own experiences than white male privilege in particular. I suspect each of us has much more difficulty recognizing our own privilege–along any of these dimensions–than our experiences of marginalization or oppression. It’s the nature of privilege that one doesn’t actually ‘have’ to see it. This piece is a great reminder and discussion of some of the specific ways that plays out. Thanks.
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Great post.
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Bravo! Nice work!
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Hi Richard,
I’m following up because my initial comment on your post hasn’t sat well with me. The internet makes it all too easy to engage in a disrespectful manner, or to forget that the person(s) we address are, in fact, persons. So, apologies for the dismissive and combative tone.
Here I aim to clarify the four issues I raised. My intent is to offer insight into my thinking, not to tell you what you think, or to say that you are wrong–except insofar as you attribute positions to me that I do not hold.
The use of the term “straw man” was a poor choice of words. What I meant was, it is difficult to respond to your post because much of it links my original post to positions I don’t hold. For instance, in your follow up you say “You made it clear that all hot button issues should be “decentered” and “debates” about them avoided, and that would necessarily include the use of diagnosis, force, and Electro-shock”
My post called for decentering psychiatric drugs in advocacy efforts. I did not include these other practices in that comment. I see these as each distinct–albeit often linked–practices. I intended my view on diagnosis to be clear in the caveats I offered. It is basically this: they are not valid categories–in the scientific sense of validity-they do not refer to any objectively verifiable physiological processes. I don’t think they ever will, not because there are not biological processes (and differences) that are involved in various forms of distress, but because I think the nosology is just crude and sometimes arbitrary.
Psychosocial disability: In your follow up comment you said that because I said it was inaccurate to deny the existence of “more enduring psychosocial disabilities,” that this means I endorse “Biological psychiatry.”
Actually, this is not what I meant. I intend “disability” here more in terms of what the broader disability rights movement means by disability. For instance, many deaf people do not think of the experience of being deaf as a medical problem. It’s a celebrated difference with a culture and history. In these contexts, “disability” refers to socioenvironmental barriers that prevent access/inclusion for persons whose bodies/abilities are not “normative.”
This is how I see “madness.” Yes, scientific understanding of the relationship between biology and subjectivity (consciousness) is not remotely understood. But I do think the evidence is quite strong that the nervous system is deeply implicated in subjectivity. Genetics as well as environmental exposures are clearly established in shaping the structures and functions of the human body. Now, am I a biological reductionist? No. First of all, experience shapes the structures of the brain. It’s been demonstrated that directed activity of the “mind”-if you will-changes the brain. It’s quite extraordinary if you think about it. Trauma, for instance, can have lasting impacts on brain structure and function. In fact, there is evidence that trauma actually alters gene expression in subsequent generations. So no, I do not think the body is supreme. I think ‘body’ and ‘mind’ are coextensive.
But even more fundamentally, I take an anthropological view on theories of subjectivity and medicine. This is to say that the question of whether a theory is ‘true’ cannot be established apart from the ‘conditions of possibility’ that make it true, in the Foucauldian rather than the Kantian sense. From this vantage point, talk of genetics, for instance, has already parsed the world in a particular way that belongs to a specific socioculturally situated and historical context. So on a deeper level, I actually don’t privilege this way of framing the world-which is not neutral or ‘objective’-above other less privileged ways of viewing the world or experience. I am spiritual person, for instance. I experience spiritual forces and I regard them as real and quite apart from and in no need of ‘scientific’ explanations.
But a consequence of taking an anthropological view seriously is this: people make sense of their experience partly from the materials–the words, the systems of belief etc.–that are given-but people also have agency and fashion often quite distinctive and unique meanings from otherwise familiar material. So the question of making use of a diagnostic term transcends it’s validity, actually. People make use of these terms. I’m not going to position myself as somehow knowing how someone else should understand their own experience, which words are the right ones. Take “extreme states,” for instance. Does this refer to something specific? Or is it a particular way of organizing a set of experiences within certain subcultures? Does it mean the same thing to me as it does to each and every person on MiA? I rather doubt it. What about “emotional distress?” Why do some militate against the idea of disordered thought, and leave emotional distress unquestioned? On what nonarbitary grounds do we even separate thought from emotion?
So yes, I characterized the POC Photo Project as a bright spot because the young woman whose project that is–and it is her own project–is organizing mental health activism in communities of color. She has an oppression framework. I’m not going to legislate the terms that she or anyone chooses to describe their own experience. I’m not going to assume to know better than they do what their experience is or means or what to call it.
Is there a massive power imbalance when it comes to psychiatry? Yes. Absolutely there is. Ought we to consider this when thinking about the use of diagnostic labels? Yes, we should. But I also think respecting, actually respecting someone’s agency, narrative and self descriptions comes first.
The “identity politics card.” To an extent, I agree with you here. You certainly have a stake in these matters just as person on this planet. You have ideas and experiences and a point of view that I would, in general, support your right to express. But social movements have always staked claim to “situated knowledge.” In the disability rights movement and the survivor movement we’ve often said “nothing about us without us.” Malcolm X surely made a similar claim. So I referenced my own experience not to silence you. I was admittedly upset by what I felt was a mischaracterization of what I had written. I was even more upset by the description of the young people from the POC Photo Project whose right to name their own experiences I would defend, and I would not presume to understand without actually talking with them.
In any case, apologies again for my initial glib response. I do hope this comment further clarifies where I’m coming from (and where I’m not.)
Respectfully,
Timothy
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Richard,
I don’t have a ton of time this morning, but here are some problems with what you wrote.
1. This is a straw man argument. You grossly mischaracterized my position.
You wrote i was arguing for an ” accommodation with psychiatry (and other advocacy groups), and calls for a strategic academic and legislative shift away from targeting the damage caused by psychiatric drugs and DSM diagnoses/labeling (and I am assuming also away from targeting forced drugging and hospitalization and Electro-shock)”
I called for a decentering of psychiatric drugs in advocacy efforts, not a cease on efforts in this area. To the extent that I addressed diagnosis and force, my comments were apposed. But it’s certainly easier to set up a straw man than engage in a productive way with ideas one disagrees with. My blog addressed itself to a broader view of oppression, and what I see as a more effective approach.
2. I find your argument from analogy to Malcolm X and civil rights very problematic. It is tricky territory indeed to discuss a marginalized community of which you are not a member in terms of critiquing their (our) “inferiority complex” or “deeply ingrained way of thinking.” To discuss the People of Color Mental Illness Photo Project in this fashion is offensive.
3. I’m not sure quite what you mean by science in this piece. It seems to refer plainly to ideas you already agree with.
4. Nowhere in your bio do you discuss yourself being a survivor. I’ve lived the things about which I wrote.
-Timothy
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Thanks for the generous reading Emmeline. I agree with you that there needs to be much focus on harms and alternatives. I think the attack on PAIMI in the Murphy Bill is one major concern when it comes to harms. Perhaps paradoxically, which I don’t think I made clear in the blog, is that I actually think the “loosening” of polarizations and somewhat deemphaizing the drugs–in advocacy efforts–might actually serve to make alternatives, and less drug centered approaches more palatable anyway.
In any case, thanks for reading and I always appreciate your thoughtfulness.
best
timothy
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Ted,
I’ve read bits about your own story over time, and we have, perhaps, experienced some similar things, albeit across different generations and the changes that have gone along with this. Other things that you survived, I did not experience, and no doubt we make meaning of our experiences in different ways besides.
I agree with you that the problems are quite serious and widespread. While I realize that we do see certain things differently, I also think think there is some common ground, and much of that common ground truly is grounded in ‘lived experience’ insofar as having a sense of understanding not just the more egregious harms, but also the more subtle yet damaging ways that much of these things you write about operate.
Embedded in what I wrote above is, or at least I hoped there would be, the pointing out that all manner of inequalities create environments where ‘system’s intervene in often quite harmful ways. When we focus all the attention on the interventions, and less on that environmental context, we’re missing a huge part of how this works.
I’d like to see more work on some fairly basic things like housing, education, quality holistic health care, addressing social inequiteies, respectful and creative psychosocial approaches, strengthening community…
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Yes. Thanks for reading and for taking the time to engage in the discussion here. I’t s bit tricky to figure the way comments get sorted here, but I am reading everyones comments with interest.
best
timothy
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Hi Noel,
Thanks for this response. I appreciate your perspective. I certainly don’t intend to diminish the survivor experience-that is also a large part of my own experience, after all. I mean something very specific by anti-psychiatry-and certainly not either Laing or Foucault, both of whom rejected that label.
Maybe we’ll figure out where the disagreement shades into agreement one of these days.
best.
timothy
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I agree in large measure about the dominance of the biomedical model. I also didn’t emphasize the degree to which some politicians in these discussions are seriously mischaracterizing issues and/or emphasizing things grossly out of balance-the focus violence, the bizarre rant about the drug prevention website, the airtime spent on a morning warm up at Alternatives at a previous hearing and on.
My presumed audience is people who are already critical of these things-and I think the comments in this thread illustrate this.
I agree that there are much more powerful forces at work, and I do think there is truth in the idea that sometimes certain framing of things that seems ‘extreme’ can help move things along at times. On the other hand, access to participation in politics-and advocacy-varies considerably along the same issues I’m raising here. I think there is a responsibility for those of us with greater access-myself included-to pay attention to these issues.
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Thanks for reading Sandy! I totally agree there is a lot more at stake in all those issues and it’s easy to miss those things, and I think we often forget how difficult things can sometimes be where the rubber meets the road. I think you’re posts often provide just this kind of context.
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Thanks Wayne, I’ll look for that article!
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Thanks Melodee, I’m glad these points came through my admittedly all too academic prose. I am somewhat optimistic actually about some developments in focusing on diversity, privilege, intersectional oppression and the like, but we do need to do more.
Thanks for reading!
timothy
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Thanks Matthew, you rightly note that I am writing for an audience that is already reading MiA.
I myself have been perceived as being anti-psychiatry in some settings. So emphasis shifts depending on context.
I appreciate your attention to these issues!
best.
timothy
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Hi Eric,
You bring up some interesting points, some of which I agree with to varying degrees. In terms of context, I am writing here for MiA where critical perspectives on medication dominate the conversation, so to the extent that I glossed certain issues, I was assuming, even responding to, an audience I assumed was already familiar with much of this.
Nevertheless, thanks for this detailed and thoughtful response which adds some thoughtful perspective on these issues.
best.
timothy
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Hi Frank,
Thanks for reading. I wasn’t arguing for ‘socialism through ssi/ssdi’ payments, or anywhere make the claim that I think drugs are the solution to socioeconomic problems or say ‘a drugged nation is a more healthy nation.’
That’s not at all the argument I’m making.
But then, I also pretty fundamentally disagree with your characterization’s here as in “problem people,” or it being about “how you live your life.”
You do raise some important points, in general, in terms of how law and policy can have unintended affects.
best.
timothy
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Thanks for reading, and you raise a good point about Veterans.
best.
timothy
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hi Monica,
Thanks so much for reading. I have no doubt you are far more familiar with a lot of these areas I did not emphasize, like nutrition and CAM approaches. I saw a great presentation by a nutrition researcher at a NAMI conference some years back. Great stuff. Some of the early psychosis programs are bringing in nutrition and exercise components too.
Obviously you’re work has been groundbreaking in these areas and I’m greatful for it and all the hard work you do!
best.
timothy
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Thanks for reading and sharing experience!
You really bring out a lot of great points here, particularly in terms of the way ‘care’ plays out in different settings. Your comment really provides further context and experience to think about these issues so thanks so much for taking the time to write this and for sharing it.
best.
timothy
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Hi Darby,
Thanks for reading. I did not intend the comments about anti-psychiatry as a cheap shot, I hoped to reference ideas and not persons. That being said, I do recognize there is a wide range of views.
I agree that the (bio)’medical model’ has much more power behind it than do alternatives. I also agree about the widespread problem of poor ‘care’-uncareful polypharmacy etc.
My thinking in terms of emphasizing some issues and not others, was that I was writing for an audience on MiA that is already critical and where there are many other articles that address the issues you rightly raise.
In any case, thanks for reading!
timothy
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Hi Alix,
Thanks for sharing these experiences. I wish you and your family the best.
timothy
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Thanks for reading Chrys, and for sharing your experience here and elsewhere!
best.
timothy
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Hi John,
Thanks for reading. I agree in large measure about you comment regarding the “style” of this piece. I’m so steeped in that literature these days it’s actually easier for me to make these points in that style than in more plain language. I do hope to get better at that. Thank’s for wading through the prose and I’m glad you found something worthwhile!
Best,
Timothy
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Hi Ted,
Thanks for reading.
I might have found better words than “dogmatic anti-psychiatry” positions. On the other hand, I do think there is a tendency-on all sides-among many to be uncritical towards ideas one already agrees with, while immediately rejecting ideas one links to “the other side.”
I suspect we might see some of these issues differently. But that’s ok. I’m sure there’s also some things about which we agree.
Best,
Timothy
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Hi Jonathan,
Thanks for reading!
I absolutely agree about the issue you bring up about food production and availability being an important part of this.
I’m familiar with the studies you bring up, but I do interpret them differently, in some respects, than does Whitaker. Briefly, Wunderink does find evidence in an RCT that a ‘discontinuation’ strategy in the initial period of treatment led to better ‘functional’ recovery than did treatment as usual. However, most participants-even in the discontinuation group where providers were actively working to taper the drugs-remained on the medication, albeit at a lower dose. So while yes, the study does find evidence that treatment as usual is associated with poorer functional outcomes, too a large degree it’s about dose.
As to Harrow and similar studies, the big problem is that these are naturalistic studies. Whitaker see’s that as much less of a problem than I do, or indeed what most researchers would.
Best,
-Timothy
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Hi Noel,
Very thoughtful and detailed post. The anecdote about the dissociation panel struggling to define it’s topic alone is quite interesting, if not surprising. There’s a lot else here that’s thought provoking. I appreciated the engagement with psychosocial as well as genetic and neurobiological research.
Thanks for writing.
I certainly agree trauma-individual, interpersonal and cultural- plays a role in a wicked lot of distress.
There’s quite a lot of research on this even when focusing only on psychosis.
On the other hand, if your claim is psychosis is always a result of trauma, that it’s best reframed as dissociation, I don’t agree. I do think this is one crucial avenue and I’m glad you are exploring it. But I think we need to attend to the many ways in which these states arise, are experienced, addressed and in many cases resolved: The heterogeneity of etiology, phenomenology, effective care and course.
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I try to avoid comment threads on this site, but have to chime it here. I agree with Bob Whitaker that Sandy is one of the most thoughtful, knowledgeable and nuanced writers on this site. I also find this particular piece rather unhelpful.
I’ve lived most of my life with episodic psychosis, schizophrenia spectrum. Before that I lived with my mom who has been profoundly disabled by these issues, and yes, also by harmful practices in the system.
I got involved in critical mental health activism more than a decade ago. I’ve gotten more and more disillusioned by this, and this blog post is a great example of what I find so frustrating.
In addition to living with psychosis myself, I’ve experimented with many different approaches. I’m also a therapist myself, and a researcher working towards my PhD. I read the theoretical literature, the psychoanalytic literature, the CBT literature, psychological anthropology, philosophy of psychiatry…and I do so with the same critical rigor as I read the biomedical psychiatric literature.
I’m a scientist. A social scientist. I have training in research methods, quanitative, qualitative and ethnographic. I’m obsessed with psychosis, for obvious reasons, and I’ve read everything I can find on the subject from Lacan and Perry, to Bentall and Turkington, Andreasen and Torrey and all shades between.
As a scientist, what I see is a lot of competing ideas, lots of theories, some things that work for some and not for others…nobody can say what psychosis is, or how or whether it might be overcome in any given instance. Whether by D2 dopamine receptors or spiritual transformation. I personally thing psychosis doesn’t refer to one thing. It refers to thousands of different things, with many different eiteologies.
Daniel, as a person who lives with psychosis, and has been through the system, and is now a researcher…I don’t personally find your opinions, or at least this way of expressing them, any less paternalistic or “unscientific” than the straw man you are setting up as “biological psychiatry.”
As far as I know, you don’t experience psychosis yourself, and yet you seem so set on explaining to everyone how they should think of the experience? Viewing it as a transformative experience is no less culturally determined as is viewing it as “biological.” This might be helpful to some, and not others.
I’m critical of the standard of care in psychiatry myself. The drugs have serious risks and are grossly overprescribed. But the research on their utility is far more complex and nuanced than what you describe. I wish a site like MiA could find a way to not be so black and white.
Best,
Timothy Kelly
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I take “plug” to mean mention in support of.
In the context of a discussion about abuse, someone responds by talking about how they would like “ghetto justice” or “kick his face in front of his wife,” an act that would almost certainly be extremely traumatic also for the persons wife-and you respond to these comments by applauding their mention of “right” politics?
Yes. I consider that a (not so tacit) endorsement.
Again, it wasn’t the psychiatrists who intervened in this situation. That is a distortion of the Globe story you posted.
Further, I think the “right” politics, the abusive comments, and the one sided “distortion” of complicated issues is endemic to Mad in America in general. Again, not helping “our” cause.
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I also lived in foster care, and sometimes its better than the alternative, plain and simple. Ted, I think you may be jumping to conclusions about the story you’re discussion. It seems the “jury” is still out, and besides, it wasn’t psychiatrists who initially intervened in this case. Child abuse is real, and I don’t think you can say with any certainty that it’s not what is happening here. “Fair and Balanced?”
As to you’re response to the above comments. You offer a plug for Glen Beck, and applaud your commenters for bringing in “right” perspectives, ostensibly including their calls for “kicking teeth in” and “ghetto justice.”
These are some reasons why I think Mad in America might just be doing more harm than good for “our” movement(s).
I’m a survivor myself, and I can relate to the rage, but I really think stuff like this is hurting “our” cause.
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Nijinsky,
Yes, I did say “I cannot really respond” in a different post than the one Sera was responding to. She then, responded to this post by saying I was ‘judging’ someone’s decision to not be ‘out’ on this site, which I was not. My point was really to simply say that I did not want to respond to someone who was attacking me-based on personal information I have made publicly available-while they are anonymous. Thats not a judgment of them. Thats my preference.
As to ‘decency’ as you say, It’s not a matter of decency for me to choose to respond or not respond to people, especially in the context of a comment thread, and especially when there are many many attacks of positions I don’t hold.
But going back to Sera’s original post, arguing on the internet when a framework has not been set so meaningful dialogue can happen is likely fruitless. As appears to largely be the case here.
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Sera,
I don’t think you read my post. I made no judgement about private commenters on this site not being ‘out,’ My comment had to do with people who are already ‘out’ and visible-bloggers on this site etc. who I have had conversations with, or been privy to their conversations with others who share some of the concerns I have expressed and stay quite about those concerns. That is what I am referring to. You and I both know that there are ugly politics behind the scenes. This is what I am referring to. I’d be more than happy to discuss those things publicly if you really want to have that conversation, but I suspect we could find a more appropriate venue. I’m in favor of transparency.
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Anonymous,
I want to venture a response to this post. You’re graphic description of psychiatric abuse resonates for me. I have experienced similar things.
I will be the first to admit I am not a “perfect even-handed teller” of truth etc. I say things because I’m angry sometimes, or hurt, or ill-informed, or just plain wrong. Everyday. Probably a few times in this thread.
If I have given the impression that my intention-here, on my blog, on twitter, or anywhere else was to discredit your experience of abuse, of distress-then I am sorry.
My point about ‘ongoing’ experiences vs. remitted experiences is a very touchy and complicated issue. I realize this. It leads towards comparisons of suffering that can be discrediting-that at times I have said things that are discrediting-I acknowledge this. It’s really hard to talk about this stuff. Language sucks. So many of us are wounded. But I think it’s really important that we struggle to talk about this stuff still.
It’s not about ‘medication.’ I see it as quite a separate issue, though it becomes entangled in questions of medication. I am extremely skeptical of psychiatric medication. For instance, I agree in very large measure with Robert Whitaker’s conclusions, particularly more recently in response to the Wunderink findings. I take issue with some of how he arrives at those conclusions. These are subtle-but I believe important points.
I certainly do not think anyone should be forced to accept any label they do not-with the best available information-choose. I tend to refer to my experiences as ‘psychosis.’ I’m not a huge fan of that word, but I like bipolar and schizoaffective even less. ‘Extreme states’ isn’t specific enough-for me. So I go with psychosis.
You have posted a whole ton of stuff here. Some of your points I agree with, even if I think they are misapplied to me. Some of your criticism of me is probably valid-it’s worth reflection.
But most of it doesn’t apply to what I believe at all. I can be quoted out of context. I’ve also said stupid things. So be it.
My point about peoples experiences being ‘erased’ is not to suggest that you personally are doing this. It’s a risk-often unintended-that I see as resulting from the way certain positions are framed in a broader, structural sense.
I do find some of what you have said as offensive to me personally. But I can see where you might be offended by some of my statements as well. I hope I’ve clarified some of that.
I do also think your attacks on Nev are very misguided. She is doing more truly beneficial work-and on many different levels-to improve these things than anyone else I know. It kind of takes us back to the original theme of Sera’s post-walking the talk.
Sincerely,
Timothy
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Sera,
Thanks for this response. Today has been busy-as I’m guessing for you-so I missed it in the stream of emails that came in as responses from this blog.
Again, I’m sorry for hijacking your thread. When I posted my original comment, I typed it out hurriedly and definitely was speaking to larger concerns beyond your original post.
Thanks for sharing more about your experience and how that connects to your work and way of identifying. It takes no small measure of courage to put those things out there publicly. But it may be one of the most helpful things-for people to see that we need not keep these things secret; that one can experience them and still live an inspired life.
Language is a problem. English is especially prone to casting things as dichotomies. Even as I critique dichotomies, I often end up instantiating my own dichotomies; also, there are simply no good words to talk about many of the things we are talking about-‘extreme states’ ‘psychosis’ ‘recovery’ ‘peer’ etc. all loaded with baggage we do not necessarily intend.
I do have criticism of “MiA” as a brand, and how it is positioned-in a broad sense. I also have great respect for a number of folks who blog here. I do have criticism of many of the ways Robert Whitaker describes studies and findings, and has allowed others to cite his work in support of even more problematic claims. But I also cited Robert Whitaker’s Boston Globe reporting when I wrote a piece on these issues back in 2003, long before Anatomy.
As to organizing, I did complete a survey. I have looked at the HVM-US website. I was not able to find any information about who-specifically-the individuals were who wrote the charter, who the ‘organizers’ are etc. How decisions are being made etc.
As to ‘professionals,’ my point was not to attack you for charging money for trainings. Trainings cost money. Even with volunteer facilitators one still needs space, electricity, materials etc. Further, I don’t think its wrong for facilitators to be paid. My point was that the line between ‘professional’ and ‘not-professional’ is far blurrier than is often characterized-in my opinion-around here. My point in mentioning that I ‘qualify’ as a professional was not intended to create a hierarchy etc. It was to illustrate this point. Also, I think local capacity building-something you all in WM seem to have done quite well in-should always be prioritized.
It seems clear from this comment thread that the primary concerns I was voicing are not being heard or understood. Many responses seem directed at psychiatry in general for instance, which is not my position at all. I’m sure I could have been more clear. It’s also true that I conflated your original post with a broader concerns on MiA, so I suppose I’m guilty of this same sort of thing. I was responding to broader issues, and with a context that extends beyond this post or even this website. Plus this is, after all, a comment thread.
Certainly anyone is welcome to read my (personal) blog and twitter feed, though these are not a part of any “taxpayer funded” job. You can watch my amateur videos and listen to my bad recordings even, if your so inspired.
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Thanks Matthew,
I wrote my original post in haste, and didn’t anticipate all of this response-particularly attacks on Nev-by an anonymous poster who dug up a post Nev had taken down-and painstakingly combed through my twitter and blog for quotes etc.
This is the risk we take being ‘out.’
Just like every day when I go to work or school and make no secret of the fact that I experience ‘psychosis’ have been diagnosed with things that scare people etc. I take the risk-in spite of also being human and not enjoying being attacked, especially about such personal things as what’s under discussion here. I take the risk because it’s easier for me than for a lot of other people.
As to my perspectives I’ve shared here: also risky. The fact that I DO think there is a huge difference between a brief ‘psychotic like’ experience and ongoing psychosis, for example. Somehow this is a taboo point to make in ‘c/s/x.’ Yet somehow not taboo for people to suggest that if one continues to experience ‘psychosis,’ its simply because of the choices one makes. This idea needs to be contested forcefully.
On that note-and on the note of taking risks-I actually have had private conversations –with people who write blogs for MiA –who agree with what I’m saying. I’ve heard the sentiment that “if only you knew who agree’s with this” etc.
So, there are more ‘visible’ ‘powerful’ folks in this community who remain silent on these issues. I’ve even invited them directly to offer statements. Silence. except behind the scenes.
So I take the risk. Nev takes the risk. There are others. Somebody has too. With my real name. In full view of my employer, my department faculty…anyone with internet access. It’s a social justice issue. And it’s a social justice issue within movements as well. So we open ourselves up to attacks. So be it. Some will read (have read) what I have to say and recognize a perspective that is absent from a larger audience. Because no, I do not represent anything remotely ‘mainstream.’ hopefully it will encourage others to speak up.
I will say I am very disappointed in people who have a recognizable survivor ‘celebrity’ status who have expressed privately they share some of these concerns, but are afraid to speak publicly. Hopefully some of you are reading this, and if it’s a conversation we have had-yes, I’m talking to you.
And Sera, sorry this ended up a hijack of your original post. I did not plan this. It just happened to be the morning and the blog I was reading when I finally posted here. You’re right-it’s off topic.
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Thanks Nev, I think some of the comments in this thread are illustrating the problem. There also seems to be some difficulty in realizing that there are not “2 sides” on these issues. There are many many perspectives. That, of course was one of the points of my original post. One of the other key points was calling attention to the frequent claim everyone with ‘psychosis’ can ‘recover’ if they simply do the ‘right’ thing. Then, if they don’t, it’s there fault. This being what I meant by saying peoples experience of ‘psychosis’ gets erased-meaning the fact that it is a ‘real’ problem that for many continues. Again, very well established in all the longitudinal studies.
This comment illustrates this:
“Some people feel ‘morally blamed’ for not succeeding in mastering their problems without psychiatry’s toxic drugs. I don’t feel this way.”
Succeed in mastering” your problems? Clearly suggests its a simple matter of the person ‘overcoming’ the problems. Goes directly to my original wheelchair analogy.
This same poster-who I can’t really respond to because they aren’t using their name-seems to be attacking “psychiatry” as a proxy for arguing against points I made in my original comment. I’m not a psychiatrist, didn’t promote psychiatry in my original post, and am critical of many psychiatrists as well as the ‘standard of care’ for ‘psychosis’ in US psychiatry. That’s pretty clear on my blog. But anyway, and to another point, it’s not as if psychiatry is monolithic anyway. There are in fact psychiatrists out there using a very cautious and well informed approach to the work they do. At least one of them, Sandy Stiengard, blogs on this website.
Again, black and white.
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How about this for sera:
Sera,
Thanks for taking the time to write such a lengthy response. It is absolutely true that my response here is more to broader issues I see with Mad in America in general, and a few affiliated groups that seem to have considerable overlap. So, to the extent that any of these ideas are ‘misapplied’ in this case, I can’t be sure because I don’t really know your perspective either. Either way, my points are ones that need to be discussed.
Perhaps I wasn’t clear enough about ‘professional.’ I don’t work in a capacity where I ‘diagnose’ people. I’m far more interested in research, advocacy and system change-why I’m getting a PhD. I also make it a point to be disclosed. Besides, if one is charging money for a service-like ‘trainings’ or ‘workshops’ etc. about how to ‘help’ others with these sorts of issues, I don’t see that as appreciably different than providing ‘professional’ services really.
On the note of civil rights. I agree. I identify as an oppressed ‘minority’ with respect to these issues. Part of what that involves is representation in my view. On that note, you say you don’t identify as a voice hearer, but you are an organizer for a ‘peer’ based ‘hearing voices’ network? I guess this is an area where I take issue also. I don’t base my identity around having ‘survived’ psychiatry etc. or being labeled-though I have had those experiences. For me, it’s about experiencing psychosis, which is simply not equatable to the ‘ups and downs’ of life for the vast majority of people. To suggest that it is, in my opinion, erases the experience of people who suffer-myself included-and also takes away our legitimate claim to speak and organize based on the ‘authority of experience.’ For non ‘voice hearers’-as you call it-to be leading the organization of these groups, and especially when controlling training, charging money for trainings, lacking in transparency in decision making etc… I guess I don’t see how thats different than ‘professionals.’ Where can I get information about who is organizing the Hearing Voices Movement in the US? is there representation across different regions and perspectives, taking into consideration the sheer size and vast diversity of the US? Who is decided where groups can be held and by whom? Are these people who have experience with hearing voices or psychosis? Ongoing experience rather than brief and remitted experience? These are the sort of more concrete things I wonder about.
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Hi Sera,
I read blogs here on MiA (including yours) occasionally, but have never responded until now. I am sympathetic and allied with many of the views expressed. However, I also disagree with much of what is written on MiA. In this regard, I related to this statement in your post:
“I’m not sure why I get so easily drawn into these battles at times. Sometimes my fingers are typing while my mind is already insisting, ‘Stop! This is pointless!’”
I feel this way now as I write this comment.
I appreciate your work and your efforts, and I expect we might have more common ground than differences of perspective. I want to acknowledge that. But this comment will be addressing what I see as differences, based on reading your blog. I intend what follows in the spirit of dialogue.
Some of the experiences from which I ground my statements:
I’ve been living with ongoing experiences of ‘psychosis’ for more than 20 years, including things that might be categorized as ‘voice hearing,’ as well as many other types of ‘altered states,’ most often experienced as very threatening. I’ve had significant interactions with various types of psychiatric services, spending more than a year of my life incarcerated as a mental patient, including in a state hospital. I’ve carried a number of diagnoses including both bipolar with psychosis, and schizophrenia spectrum.
I’ve been involved to varying degrees over the years with c/s/x activism, and have tried many different approaches to both framing my ‘extreme state’/’psychotic’ experiences, and navigating them in my life. I’ve used acupuncture, I’ve attended a ‘Hearing Voices’ group, intentional mutual support, as well as medication and various types of ‘professional’ psychosocial approaches/frameworks.
In general, my experiences of ‘psychosis’ remain basically the same as they always have been, regardless of these efforts. My ability to ‘cope’ with them and live my life is what has improved.
Also, in the last few years I completed a masters degree, qualifying me as a ‘mental health professional,’ and I am currently working on a doctorate.
When I read MiA–and it often seems extremely polarizing–things appear framed in terms of ‘a system’ or ‘professionals’ vs. ‘ourselves’ as you say in this post. In my experience, the views are way more diverse than that.
You say:
“That change will happen as more professionals shift how they work and talk about those shifts with their colleagues, but also because more people will be adequately supported to move through the parts of their experience that are negative and better integrate their worlds.”
So would I qualify as a ‘professional’ who needs this training you talk about so I can better understand how to work with people who have ‘anomalous experiences’ ? Or do I qualify as someone who-on the basis of lived experience- has special insight into these things, or needs to be supported to ‘integrate’ my worlds etc?
What about ‘recovery?’ I personally think it is problematic to emphasize ‘full recovery’ as in many of the public ‘heroic survivor narratives’-as sociologist Linda Morrison has put it-without emphasizing that many people-myself included-continue to experience ongoing distressing experiences of ‘psychosis’-regardless of any type of intervention, ‘Hearing Voices’ groups or otherwise. I think it can be problematic when individuals speak –on the basis of relatively brief or circumscribed experiences–about what those of us with enduring and ongoing difficulties need to do in order to ‘recover.’ Clearly these experienced are poorly understood ‘scientifically’ and ‘culturally,’ but what we do know seems to point to their being ‘caused’ by many different things and leading to many different outcomes. The longitudinal studies that are frequently-and problematically-cited as evidence that neuroleptics ‘cause’ psychosis, point to this heterogeneity. Some people simply continue to struggle. It’s been a consistent finding. For me personally, this is why it has been important to focus on how to live the life I want in spite of my different way of experiencing the world (ie. ‘struggles’)
Here is a metaphor, not intended to smuggle in a medical framework, but ask yourself: would it be reasonable for a person who recovered from being wheelchair bound with a broken leg to speak to the experience of someone wheelchair bound due to paraplegia? To what extent could they really understand that experience, or make recommendations about how the person might ‘recover?’
Also, a message I often see on this website-and related spaces-is that people with lived experience need to be listened to, should be leaders in providing support and care to struggling others. I couldn’t agree more. So it confuses me when the perspective of a great many folks who have these experiences are discredited–almost as if they are brainwashed–because they take medication, identify with a diagnosis etc. I realize that powerful ideological forces can both constrain and produce experience and identity-for all us, no one is immune.
But it also strikes me as paternalistic to assume to know what is best for so many people, when these matters are so context dependant and unique. Each person is an expert on themselves? I simply don’t think-for me personally-that ‘dialoguing with voices,’ for example-is helpful. I’ve tried it. I do wholeheartedly believe it when individuals say it is helpful for them however.
Also, on the topic of context, I think it crucially important to always bring in issues of intersectional oppression and privilege. When we look at all the data on the vastly disproportionate social inequities (poverty, often unsafe neighborhoods with limited access to healthy food etc., low literacy, unequal access to employment or education and on and on) faced by community mental health service users, it becomes problematic-in my opinion-to focus too much on approaches for ‘anomalous experience’-without robustly discussing and addressing these issues as well. This is especially true to the extent that any of us speaking about these issues–myself included–have privilege or access to resources that many many others simply don’t.
To what extent can I explain to someone else–on the basis that I have learned to live with ‘psychosis’ well enough to be a successful PhD student–what will work for them, when they might be dealing with all kinds of additional difficulties I simply haven’t?
You said this about recent exchanges on this topic on Huffington Post.
“Some of it, of course, is eliciting the most typical of responses from those spouting the standard media and system-driven messages offered so freely because they “know it to be true.”
You quoted a really nasty comment from HP that seemed to me to be from a ‘troll.’ I guess I think it would have been far more generative to respond instead to Allen Frances’ HP post. I certainly don’t agree with all that he says, but it seemed there was much room for common ground. I worry that quoting the troll comment in the context of speaking about ‘the standard media and system-driven messages’ promotes a polarized dichotomy when-at least in my experience and studies-the context is anything but dichotomous-there are many many different perspectives.
That takes us to the issue of dialogue. You say this about ‘talking to those with whom we disagree.’
“And talking to those with whom we disagree can sometimes be productive. On occasion, it may actually result in change. Additionally, as more of us speak up with views that counter the status quo, those who remain stuck in the box of old perspectives might at least begin to get the idea that the world outside their box is growing. If nothing else, arguing with those with whom we disagree challenges us to get better at articulating our ideas.”
Would you characterize me-based on all I’ve written here– as ‘stuck in the box of old perspectives?’
Here is what I think about ‘talking to those with whom we disagree.’ The purpose should be mutual understanding and collective knowledge building. If ‘being productive’ simply means changing others ideas or getting better at arguing, that’s not dialogue in my view. We have ourselves to be willing to be wrong, to learn from others. A good place to begin-in my opinion-is realizing that the ‘professional’/ ‘survivor’ (or whatever we want to call it) dichotomy is false. You and I both illustrate this.
Any ‘movement’ that presumes too much to know what’s best for others, isn’t willing to learn or be wrong when presented with conflicting information or experiences, ignores heterogeneity and individual differences, isn’t truly transparent and democratically organized…well, isn’t that just recapitulating the worst of what we want to change?
Respectfully,
Timothy Kelly
P.S. I am going to cross post this response on my personal blog, though I realize this might elicit attacks similar to some I have seen in comment threads here, not unlike the one you quote in this post. Here’s the link: http://malingeringnormal.wordpress.com/2013/08/25/madhearing-voices-movement-polarization-response-to-mad-in-america-blog/
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