There is a seemingly limitless supply of words and phrases that are used in dubious ways within the ‘mental health’ field (including, perhaps, ‘mental health’ itself). These terms are employed in a variety of ways that serve to justify lack of direction, perpetuate discrimination and dangerously oversimplify or confuse the complexities of being human. Some will forever maintain that the ‘language conversation’ is overdone and tiresome; that it diverts us from the real issues at hand. However, there’s no getting around the fact that how we speak tends to reveal a great deal about our underlying beliefs and assumptions – some of which may elude even our own awareness. To deny this seems to be a critical misstep, particularly when (as so many of us who’ve been diagnosed have been told) there is little evidence of ‘sickness’ that appears to be as powerful as denial itself!
The typical vocabulary of ‘mental health’ offers an over-abundance of choices to pick on following the lead in above, but my pet peeve of the moment is ‘big tent,’ so that’s where I’ll land for now. Arguing for a ‘big tent’ approach to various conferences and other events within this ‘movement’ and the mental health system at large has seemed increasingly commonplace. For some, I believe the motivation lies largely with wanting to be regarded as agreeable and the undeniable fact that a ‘big tent’ approach can aid in avoiding conflict. However, for others, it’s clearly less about avoidance and more about a mix of strategy and/or apathy.
I’ve personally heard multiple people defend their efforts with the ‘big tent’ frame in the last year. Most of them have literally said (or written) the words ‘big tent.’ Others have instead quipped, “What works for us won’t necessarily work for you,” or the ever chipper “diversity is a good thing!” Unfortunately, there is an elephant under this ‘big tent’ with us, and he’s dressed up in his flashiest circus costume so as not to be missed.
Said elephant whispers (as elephants needn’t yell) reminders that these words don’t come out of nowhere. They inevitably rise up when someone ‘under the tent’ has taken offense or expressed concern about dilution of values, purpose and/or vision. More importantly, these words come when someone else wants to write them off. Yes, in the vast majority of instances, the ‘big tent’ frame is either a big, fat brush off or the latest, greatest way of excusing a complete lack of clarity in vision. Or both. Usually both.
At its very worst, the ‘big tent’ claim is asking those of us who have historically been discriminated against – who have experienced oppression, abuse and real loss of liberty – to sit quietly next to those who would further disparage us. (This happens often out of ignorance rather than intent, but ignorance and intent make for muddy and often inseparable partners.) Of course, requesting that we sit side by side with people who are referring to us as dangerous or broken, or treating us like little pets doing cute tricks is one hell of a big ‘ask.’ And yet, more often than not, people don’t seem to see it that way.
Few seem to notice, for example, the wispy threads of oppression that entwine us when someone refers to a whole group of people as ‘the mentally ill,’ or reduces a real live person to an acronym like ‘SMI.’ They don’t sense the erasure of our very humanity that happens when our experiences are blindly and uniformly boiled down to diagnoses, no matter how much some of us are screaming about trauma or other ways of making meaning of our own lives. It all floats by unnoticed – barely heard. It’s unremarkable for being such a pedestrian part of our linguistic landscape.
Just once, I’d like to share my story at a conference (any conference) and have it truly be heard. I’d like to share how much I was hurt by psychiatric diagnosis and a ‘mental illness’ perspective, and how I regard my experience as being largely rooted in trauma, and have people not revert immediately back to referring to everyone as ‘mentally ill.’ Just once. It hasn’t happened yet.
Requests for adjustments to language are likely to be greeted (at first) by some degree of puzzlement mixed in with a smattering of ‘thank yous’ for “bringing that up.” (“That sort of awareness raising is just why we invited you here!”) But should you continue to protest when the language goes on unfettered (as if you never spoke up at all, no matter how thankful they said they were), you’ll eventually get shouted down or dismissed as the ‘language police.’
They may try to avoid calling on you. Whispers and eyerolls would not be uncommon at this juncture. The exasperation will start to show plain on some faces (even under strained smiles), and you’re likely to start feeling more and more like a child to be mollified until they can get back to ignoring you. (“Actually, we just wanted to feel good about our efforts to raise awareness. We didn’t actually want to change. Could you please hush up now so we can get back to our real business?”) Because, after all, what they really wanted was to feel progressive, not uncomfortable.
Why is this phenomenon so often invisible to most? Would it be easier to see if people of color were asked to sit in a room next to others who were spouting off racial slurs as if it were a part of normal and polite discourse? Would we, in today’s age, consider this an acceptable expectation? Would it be seen as justifiable variance based on cultural differences or a ‘big tent’ full of diverse perspectives?
Certainly, our nation is still deep in the throws of oppression and discrimination related to the color of one’s skin. However, I find this comparison nonetheless useful as most people – regardless of their background or personal beliefs – at least seem to get that language where race is concerned is an issue and there are certain expectations in professional conversation. The same can not be said for the world of psychiatric diagnosis at this time.
Indeed, few seem to acknowledge what they’re asking when they trot out person after to person to share their (so-called) ‘recovery’ stories at various events, often reducing them to pure entertainment, ‘cuteness,’ or ‘feel good’ moments rather than evidence for genuine ideological shifts. These individuals want to be congratulated for involving people with “lived experience,” even though – so often – they still see those people as the exceptions to the rule. (“How inspirational! Too bad the people I work with are so much lower functioning.”) Little care is given to how vulnerable it can leave someone to lay out the darkest parts of their lives in a room full of strangers who themselves are frequently reluctant to even share the name of the town in which they reside.
(Note: I am not now asking you to congratulate people for being ‘so brave.’ In fact, if you are someone who has done this in the past, please stop. I’ll come back to this point in a subsequent blog soon to be written.)
Nor is the tautological trap of it all particularly acknowledged. You know… the (sometimes unspoken) one that totally belies any genuine belief in people’s overall healing potential. It generally goes something like this: “You must have been misdiagnosed!” or “You can’t possibly have been that bad, if you look this good now!” Underneath that, of course, resides the belief that ‘no one who has been that bad is ever likely to look too good.’ (This has the funny effect of pushing many of us into telling stories where we reveal even more of our darkest moments in an effort to prove, “No, no, no! Please understand: We really were that bad! Don’t dismiss our stories!”)
How often are these same people asked to stick around for policy discussions, or give honest input on system approaches? How much room are they generally given to make providers uncomfortable with their feedback (particularly as compared to the amount of discomfort with which they themselves are expected to sit)? And what about when those who’ve been oppressed join the oppressors (perhaps because it’s the only visible path to power for themselves)? I’ve heard the ‘big tent’ excuse just as much from people who have personally experienced the mental health system from the ‘service recipient’ end as I have from anyone else.
Is there a place for ‘big tent’ attitudes? Sure. When there’s one very concrete aim (fighting for or against certain legislation, for example), then getting lots of people who otherwise don’t have a whole lot in common and shoving them under the canvas to work together can be great. (To be clear, concepts such as ‘recovery’ and ‘alternatives’ that are just as likely to be supremely vacuous as they are to be meaningful do NOT count as a ‘concrete’ aim.) Moderately-sized tents can also be useful when a very intentional effort toward mutual exploration and/or sharing and shifting of ideologies is the goal. However, great care must go in to the balance of attendees and facilitation of activities so that the usual power dynamics do not reign.
But, looking to gain solidarity, clarify ideas, brainstorm next steps? Fighting for more systemic change? Still needing to figure out what it means to have ‘integrity’ around your goals and vision? Don’t have the capacity, energy or understanding to hold your own ‘center,’ and demand respectful moderation? Looking to create a safe and respectful space for all those you are inviting in? Then keep that tent small! (And, to be clear, ‘small,’ doesn’t so much mean numbers of people as it does the care taken to be transparent and intentional about ideologies, priorities, and aims.)
Hey, for what it’s worth, I will still be out there attending conferences that are hard to be at for how people will speak about (and for) me or the groups to which I am tied within those contexts. I’ll still be out there sharing my story, too, because I do see the value in doing so even though I also see all the downsides and misguided parts of the picture.
But, please don’t try to tell me that the spaces where I see a pervasive lack of respectful language, attitudes and vision are justifiable because of some sort of ‘big tent.’ It’s flatly disrespectful. It leaves you glossing over abuses in the worst sort of way and places you squarely in the position of oppressor, unwitting or otherwise. It paints me as ‘the problem’ when I won’t just play along. It doesn’t do either of us – or any sort of movement aimed at progress – any good at all.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
I’m compiling a book with input from the MIA community, it contains; experiences of survivors of the mental health system, recovery stories, opinions about the mental health system, and other issues. Please write an article for the book. I look forward to it. I am the Voiceless in America writer for MIA (read me on the site). Working on behalf of the voiceless population has been my passion and my commitment for over 30 years. email me, please, at [email protected]
Hi Margie, I have definitely seen your pieces on Mad in America. Thanks for commenting. I will e-mail you. 🙂
Ha, as an academic I can tell you that without at least some entertainment during conferences, one is just bored to death. You should specify: ‘ if you want me to provide entertainment at your conference then please, pay me accordingly’ (there are rates for entertainers), or send a check after.
Personally, I find it very irritating when such conferences provide space for people with ‘lived experiences’. They should rename it, full stop. They should provide space for ‘real specialists in the domain’, since this is who we are. Doctors write treatises, we, however, ‘live’ the real stuff.
True enough, Ekaterina! Having just come back from the National Council for Behavioral Health, it was clear that a premium was placed on entertainment. I can only imagine how well people were paid. And yes, our real life experience living our own lives (which is, for many of us, partnered with supporting others in similar circumstances) is still highly devalued. Thank you for naming that.
It took me a few minutes to figure out what Sera was talking about, as I never go to such conferences. I cannot imagine how attending gatherings of mental health bureaucrats would accomplish anything towards my liberation — from the oppression of mental health bureaucrats.
I guess if your political activity is mainly running a agency that these mental health bureaucrats fund, it sort of forces you to rub elbows with them. I am grateful that I don’t have to do this.
I don’t mean by this to attack Sera, as I believe she is diligently and sincerely trying to create a helpful agency for people who have been trapped in the “mental health” system. But I think what she is railing against should have been pretty obvious to her. Of course the bureaucrats and the shrinks don’t really respect us. As for most of them, they never will.
We will get respect when we really start fighting back. They will respect us, or at least fear us, when they realize we are serious about working for our liberation. There is no future for our movement and our freedom as long as so many sincere and capable people spend their energy on the sort of nonsense that Sera writes about here.
There will be no end to this garbage until we stop thinking that minor reforms will somehow lead to major changes. Even with the best of intentions, those who think they can accomplish something worthwhile by working within the system will be coopted by it. And the good energy and commitment they expend on this will just be wasted.
Ted, I know that we likely won’t ever agree on this, but I continue to believe both efforts are needed. In truth, if just one person in the audience changes what they do enough to tell someone they support that there’s something different available out there beyond the conventional mental health system, that feels important to me. I feel like we cut off too many people who are still immersed in the system’s services by taking a strict ‘fight only’ approach, and I can’t quite convince myself that that’s okay. This remains true even if reform of the system itself is a hopeless venture.
Sera and others
I wonder about somethings; one strategy in the “power and control” domain is to get like-minded people to argue among themselves to the point of being distracted and not united around a central purpose/goal. the other is to make the “victim”, “oppressed” look stupid and irrational so that no one takes them seriously. As a former user of psych meds I like to think of myself not as a victim but as having been mis-informed ( I became informed thanks to google) and I think of psychiatrists (since there are 2 in my family and I have worked very very closely with dozens of them) as insecure people who have historically been in competition with what consumers call “real doctors” and psychologists, and now nurse clinicians and physician assistants. Anyhow, I don’t range against the system I am constantly thinking about the best way to change one mind at a time if that’s the way to go. I hold Whitaker’s book under my relatives nose and at least one of them has now reduced her hours and is hell-bent on getting out of the field altogether. So there it goes. Any comments?
Hopefully MIA and similar organizations will increasingly have their own conferences to provide an alternative to this language. For now here are the translations that I use when reading about mental illness:
patient – human being
diagnosis – meaningless invalid label showing lack of understanding of said human being
mental illness – emotional distress
course/outcome – how people experience their lives over time
prognosis – the deterministic illusion that we can predict what we really can’t
treatment – (ideally) an attempt to understand and help another human being, (usually) giving of medication and ignoring of the person
recovery – improvement in wellbeing, maturation
biopsychosocial – I reframe this as socialpsychobio, or sometimes as “BS”
schizophrenia – severe emotional distress of some unspecified form
bipolar – severe emotional distress of some unspecified form
borderline – ditto
We should publish a dictionary to make understandable the almost extraterrestrially bizarre language which these people use for their fellow human beings. Sometimes I get this funny image of APA/NIH psychiatrists arriving to a conference via spaceship looking like the USCSS Prometheus from the movie Prometheus, except this ship has drug makers’ decals plastered all over the outside.
Just imagine them arriving for their conference from the planet Psychiatry, 40 light years distant, in this giant ship. The spaceship has to be large to carry all the medication they have with them: https://images.search.yahoo.com/search/images;_ylt=A0LEVxzoo09VE.0ATCBXNyoA;_ylu=X3oDMTE1Njhpbm04BGNvbG8DYmYxBHBvcwMxBHZ0aWQDVklQNTgyXzEEc2VjA3BpdnM-?p=uscss+prometheus&fr=yfp-t-901&fr2=piv-web
Thank you for your thoughts and the translation dictionary starter 😉 I particularly like your ‘biopsychosocial’ entry 😉
Sera, as ever, you have named a problem that seems invisible to most non- survivors one will encounter at conferences and trying to work with bureaucrats. And sadly this particular problem seems to have remained unaddressed in the 25+ years I’ve been doing this work. It’s very discouraging that we keep saying these things and people still don’t get it. It’s not rocket surgery.
I agree, Darby. I find it endlessly perplexing that some of the changes we ask for – particularly those that require effort rather than money – don’t even get to the point of full comprehension and consideration, let alone implementation. Thank you, nonetheless, for being one of those people out there who has tried so hard to get the message through for so many years!
nicely said, Sera. i think what you described is right on the money, and the way you described it is fair. as a slightly side note, i have pretty much grown to hate going to conferences, or at least most of them. all the fake hoopla, the “wow i learned so much” when i can’t quite figure out what was remotely new, and all the self-congratulatory pride that “we can all put aside our differences under this big tent.” i think there is something about coming together to fight a common enemy and stand up for a common cause, but i think a lot of times those are just surface efforts, and underneath it after the conference ends it’s just back to the same-old, same-old…….
greetings to you —- daniel
I have to admit that I go to conferences- but I agree with Daniel. It is nearly always the same, ‘here we go again’. Pretending we have never heard it before. Being amazed when a ‘patient’ speaks in a moving way and yes raising up and having a tear in ones eye. Sera, deepest respect to you and your frank and honest way of being in the world. When our planned projects starts with its purpose to provide alternatived to diagnosis and drugs, I will be happy to invite you as a speaker. Really hope to find ways to work together towards a system which is not easily done but absolutely necessary!!
Thank you, Carina. I’d love to find ways to work together. 😉 All I’ve ever heard about and seen of you is someone who aims to live in and speak honestly to the world which I appreciate greatly 🙂
Maybe next time one should go ballistic and say things in not so polite way. Like telling people that all of them who are involved in forced drugging are torturers and human rights abusers and should stop. It will probably get you dis-invited for life (which can also be a win) but at least one can stop being a prop for people who treat you like a dog with rabies.
I think we should start going to conferences but not to share teary stories nobody cares about but to protest Code Pink style:
They will call us all sorts of names but they will not be able to pat us on the head and ignore.
That’s how you do it:
Well done ladies.
Hey Daniel, Thanks and yeah, I hear you! I generally find the networking to be the most useful element of almost any conference. With some of them, I do see people hearing and experiencing new things, but even then, I also generally see them returning to the same old workplace and returning to the same old way of doing things because changing is just too hard and the ideas slip away. And that’s are after the GOOD conferences…
Oy. Anyway, good to see you keeping popping up on here 😉
dig it, sera. yes, and i have been to some conferences that moved me. however, even at the better or best ones my favorite time has always been the off-time, when people just hang out and talk….. i might someday like to create a conference with just a few speakers (ones who know how to give a good, unique talk, people with a dramatic flair) and the rest of the time just open for hanging out, talking, eating, getting to know…. just an idea…. always glad to see what you write —- daniel
Thank you so much for exposing in clear words the ‘circus’ with the clownish ? entartainment part too-big-a-tent events can assign to psy survivors.
The industries usual strategy for disempowering the creative and challenging smaller party; the role of a sweet buffon who, thus positioned, unintentionally feeds the big-tent’s interests. Interests that know little about the true nature of the smaller but innovative party (read consumer, survivor collectives).
I am not holding my breath but actually share my anger about the sweet offer to share your story with the charitable reserved seat holders who are mistaken in believing that they give voice to the voiceless?!
Becoming voiceless is far from becoming mindless. Much has been written about witnessing in groups of survivors where people share similar/comparable experiences and co-midwife emotions and words for what they have been through. With much of this not being fit for entertainement and recovery-beauty-contest or wellbeing leaflets.
My point is that I am righteously angry that women and men who are activists, mutual supporters, writers, friends, mums/dads, etc., are being kindly invited to have the helpers for the seemingly voiceless tell or compile (and redact, edit) y/our stories. Which millenium? Whose stories? Whose socially relevant feelings, walks, collective creations, missions and visions?
Voiceless? Rarely have the colored, the LGBTX, the bodily different, the homeless, the marginalized and the traumatized been voiceless when honestly welcomed by trustworthy peers. Another story: our emotions, our undergrounds, our visions, our words. No conformist sweet smile recovery or borrowing of voices to echo the values of the amalgamation of reserved seat holders in the big tent circus.
Thank you for speaking for yourself and nourished from years of witnessing, sharing and activism with people who have walked the walk through psychological, emotional and social undergrounds, but who build new places by meeting between equals who share undergrounds and new ways of slowly developing solidarity, with smiles and with scars, with true claims for social justice.
Mmmh, so sorry, I am embarrassed but truly don’t have a guess about why I misspelled your name, Sera. Sincere apologies.
Thanks so much for taking the time to speak so well to the truth of all this. I particularly appreciate how you speak about what and who leads us to be voiceless or not. 🙂 And no worries on the name misspelling 🙂
Just once, I’d be blown away if MIA presented the story of someone who benefited enormously from psychiatry. Blocking people from the whole story never works as history shows us. Honest, informed people debating these matters in a public format will forge the best approach for treating the hurting among us. Trying to silence varying points of view only discredits those in authority with the power, temporarily, to do so. Censorship is a tool of the fearful.
Hi Bernadettep1. Might be that I misunderstood you, but are you asking for someone who has great experiences from psychiatry? I am sure there are many people having those experinces. Why dont you ask some to write a blog? I know very few, if anyone. Thats why I am working towards a change, since I have met far too many people who have been damaged in the psyvhiatric system. But my experience is of course very limited.
CBS News correspondent and reporter, Mike Wallace, suffered from depression alone and in silence for years. Then, facing a multi-million dollar lawsuit filed against his employer for a story he did on Viet Nam, Wallace seriously considered suicide. He confided in his doctor and was prescribed antidepressants. He credits them with saving his life. Coming to understand he wasn’t a weakling or a failure for his plight, he opened up about his experience in order to reach out to others who might be afraid to admit to such feelings and thoughts.
Debate is the key. No one at MIA wants to see someone succumb to a wish to end his life, obviously. Yet, without the free exchange of ideas, options to consider for getting help are limited. Debating the pros and cons of treatment modalities increases the likelihood that people will make wise decisions. We are all unique. Each one of us is a special mix of all that makes us human. What helps one may harm another and vice versa.
I believe, personally, to grow in numbers and in persuasiveness, MIA needs to embrace many theories and opinions for the purpose of debating them.MIA is not bound in any way to accept or approve of anything. By encouraging vigorous discussion, the cream will rise to the top. Without it, stagnation sets in. Bickering too.
Be proud of your positions and the challenges you set before a powerful force. They can’t win in the long run if truth is your goal.
Do you have such stories from yourself or others you know? If so can you share a link to one of them? In this way you can work against the censorship which you (may) feel to be occurring here.
bernadettep1, There are surely lots of people who would share a story of benefiting from psychiatry. I think they fit into at least two different groups. Some are people who have thought well about all the choices, weighed the pros and cons, tried psychiatry and feel good about that choice and its impact. There are also many people who say they have benefited, but have never been fully exposed to enough choice to be able to argue that their selection of a psychiatric approach is particularly well considered. Some of these people tell stories of how much they’ve been benefited, even while they are visibly shaking from effects from psych drugs, still unable to work and dying early. I wouldn’t argue to take their stories away from them, as it’s not my place to do so and I’m simply looking from the outside and making a judgment which isn’t fully informed itself. However, it’s hard to ignore.
In any case, there are literally hundreds of places for people to post their stories that are pro-psychiatry. However, there’s a true deficit of places to post to post the stories that run counter to popular media perceptions. I’m not going to feel bad that Mad in America skews heavily in the direction of the latter.
I don’t think censorship is an accusation that entirely makes sense on a website like this. Censorship generally refers to a more pervasive power issue… As in, not only is a particular story able to be published *here*, but it’s being silenced across the board… I think, if you look around, you’ll find it’s precisely stories like those that are published on Mad in America that suffer from ‘censorship’ more often than not.
P.S. There’s actually a fair amount of effort on Mad in America to hear a diversity of voices.. .enough so that some are upset about that all on its own. I personally at least appreciate that the overall mission to challenge the status quo seems to stay relatively intact.
Bernadette, as the moderator of this site I’m not sure what you’re talking about when you say “trying to silence varying points of view.” If you’re referring to editorial policy regarding what stories are published, obviously there’s a focus on “rethinking” or taking a critical view toward psychiatry since that is this organization’s mission. There’s no shortage of pro-psychiatry views elsewhere (in fact, they heavily predominate) so it would not make a lot of sense for this site to merely echo what can be found pretty much anymore else.
If you were referring to the comment section, I’d like to clarify that we do not moderate comments based on a person’s position on psychiatry — there is no “censorship” of pro-psychiatry views.
We do, however, moderate comments according to our posting guidelines, which are mainly concerned with civility and being on topic: http://www.madinamerica.com/posting-guidelines/. Please note that discussion of moderation in comment threads is generally considered off-topic, however, if you have concerns about site moderation you can contact me or any staff member directly via the contact form, or leave feedback in our feedback forum: http://www.madinamerica.com/forums/forum/feedback/
MIA gives voice to all those who don’t have it and are silent victims of the system. If you want to hear “psychiatric success stories” internet is full of them. Never mind that they are usually bought and paid by pharma (as anti-stigma campaigns, by front groups etc) or told in 3rd person by the good professionals. “Fair and balanced” is a lie – it should be about the truth not about not offending anyone.
I had a good relationship with all 3 of the psychiatrists I had. (I moved out of the area of the first while the 2nd retired – haven’t seen the 3rd in a few years.) Each agreed that I should be on the least possible medication as possible. I had let them know that this was a requirement of mine from the start. Each was supportive, though skeptical, of my seeking out various alternatives. I would listen to their concerns, and acknowledge that I did not want to return to the circumstances of jail, homelessness and the various other problems I encountered, but I would also inform them that the drugs left me feeling as less than I felt I should be. I took charge of my recovery, cutting back medications – informing my psychiatrist that I was going to reduce meds by 20% to 25% – and if I felt an increase in symptoms, I would go back up to the prior level. And, I did so a few times – but for the most part I was able to reduce the meds successfully. It took a whole bunch of years, but eventually, I was able to wean off all meds. – How much should my psychiatrists be credited? Some, but mostly it was the involvement with the various alternative complementary methods which enhanced my life and lessened my need for the pills or the docs who hand them out.
Thanks for this Sera! Having just appealed for a “bigger tent” in the discussion on Nancy R.del G’s blog, it made me think: exactly what do I mean? For me, it meant a willingness for us survivors, or consumers, or persons-with-lived-experience etc. to work together, even if we don’t all identify with a philosophy of “antipsychiatry” or agree on exactly what its tenets are. If I’m for self-determination and the right to know the truth about the treatments being pushed on me, that should be enough, even if I’m not a 100% follower of Thomas Szasz or R.D. Laing.
A “big tent” that also covers professional organizations (or “mental-health advocacy groups” that bring together professionals, parents and misc. concerned citizens) is something else again. For them, I think “coalitions” are generally a better goal than “big tents” for their own sake. And coalitions are built on action. Is there a common action that we’re all willing to take? If we’re mainly talking this weekend, is our talk bringing us any closer to common action? Then it’s valuable. If not, maybe it’s a waste of time.
And for damn sure, being in a coalition with someone doesn’t mean we agree to have any of our folks systematically disrespected. If you want one of us to come “share our recovery story” you also have to accept our input on what needs to change in the system, and what your group needs to be doing. Otherwise it’s a mockery of “coalition” and we really are no better than cute fuzzy mascots. No thanks!
Johanna, I haven’t read Nancy’s blog or the subsequent discussion just yet, but will try to get to it this evening. The thing is, one of the places I heard this ‘it’s a big tent’ excuse was in regards to the ‘Alternatives Conference’ which is surely an endeavor focus on people who have personal experience themselves. And I found it just as upsetting. It was used to defend inviting someone in to the conference who had a history of expressing pro-force attitudes and elevating them. It’s also been used to excuse having an aimless mishmash of workshops at times that sometimes carry no other message than ‘the system is pretty much fine… let’s just add ‘a peer’ into the mix…’ I’ve heard people referred to endlessly as ‘consumers’ and ‘the mentally ill’ in that environment, as well. I don’t think we all need to be on the exact same page or all identify as Szazian disciples, but a gathering with people who are within some standard deviation from each other would be nice… Otherwise, there’s just nothing alternative about it any more.
Anyway, I agree with much of what you offer, but I have to add that bit in.
Hi Sera, thanks for writing this great article on the big tent!
It reminded me that during the run up to the recent ISPS conference there was a very heated debate on the list serve about Dr. Lieberman having been invited to be a speaker on the plenary panel. Many of us writing opposed his involvement for some of the reasons you mention above. Lieberman had recently called critics of psychiatry- “self serving ideologues who are spreading scientific anarchy.”
It seemed to me the ISPS leaders who had invited Lieberman and supported him during the debate about him coming, embraced the big tent view that it is valuable to gather people with very opposing positions on psychiatric practices together. We finally were told Lieberman discovered he had a scheduling problem, and couldn’t make it. He has since expressed his contempt for those who dare to disagree with him, by publicly calling Bob Whitaker “a menace to society.”
There is another dimension to the big tent philosophy that also troubles me. It’s a kind of all embracing, ultimate diversity position that seems more like moral relativism in my view. It surprised me to recently hear it held by some prominent activists. It says that – “All models of understanding emotional distress and extreme states are equal- therefore its not being fair to see the medical model as any less valuable a paradigm than a social/interpersonal or trauma informed model.”
I raised the evidence of the documented harm done by the medical model, but was told that I still was “not being sophisticated if I singled out the medical model as less valuable.”
Some aspects of the big tent philosophy seem rather surreal if not Orwellian to me.
I think sometimes opening up to the ideas of others, expanding the tent, is a way to make progress. But then sometimes we notice there’s just too much nasty unhelpful stuff in the tent, and it’s time to clean house.
So it’s hard to say that all appeals to allowing a “big tent” are misguided. Like another commenter on this post, I very recently found myself arguing for a “big tent” of sorts, diversity of views, etc., in another context.
I guess what I’m saying is that i do like diversity of views, but not when they are grossly insensitive and foolishly dogmatic, like portraying certain people as “the mentally ill.” Then I start seeing the point of shrinking the tent.
Speaking of diverse views, I see how much you like quoting Lieberman. My personal favorite Lieberman quote is this one: “As someone who has worked with thousands of schizophrenic patients, I can assure you that they are just as likely to betalked out of their illness as they are to be bled or purged out of it”
Talk about a “big tent” – inviting him to an ISPS meeting was as great an idea as inviting a KKK leader to address a civil rights rally. After all, shouldn’t the KKK have rights too?
I *think* what you’re referring to as a ‘big tent’ is what I briefly referenced as a mid-size tent in the blog above… I.E., Intentionally bringing people with differing perspectives together (with the aim) of creating space to compare, contrast and debate. I generally find the true ‘big tents’ to be fairly aimless and any sort of debate to be shunned or pegged as not being open to the ‘big tent’ philosophy…
Ah, ISPS… I still need to get back to writing a blog on that experience… (The ‘Hot Stove’ is my target there 😉 )
Michael, Thanks for taking the time to comment. These are such tricky areas. Admittedly, I have sometimes argued that we don’t have to eliminate the medical model so much as stop elevating it so that all perspectives can be heard and explored. That does suggest – in its way – that they are all equal, I suppose… but that’s not what I believe in my heart for the very reason you described: That it has been used in such a way that has hurt so many people. However, in some ways I think that has more to do with the *system* than the perspective itself… So many different tools have the *potential* to be useful in the right circumstances, until they’re misused. Though I’ll always argue for starting with seeing someone as a human being who has a unique story and their own way of making meaning of it.
I can only say that I completely, 100% agree.
Thanks for reading and commenting and agreeing, B 😉 -Sera
That makes sense to me. There are plenty of groups and opportunities for “good patients” who are grateful to the system. Just check into your local NAMI, Mental Health America or DBSA support group. I tried my best to participate in those groups but finally gave up; I was tired of being the Negative Person, the one out to ruin everyone else’s nice meeting. Didn’t think I was accomplishing much, and definitely wasn’t getting anything that made me feel stronger.
I think the role of paid “peer support specialist” is an uneasy one, fraught with potential contradictions. In the right setting, where they really have autonomy and respect, they can do tremendous good. But I’ve met more than a few who are fairly bitter and cynical, feeling like they’re just providing cheap staffing within the same old system. At its worst, the institution of Peer Staff could serve to co-opt those who would otherwise be genuine peer leaders, weighing them down with a stake in the system they wanted so badly to change at first.
Could this be one of the problems at the Alternatives Conference: that a large number of participants are both “peers” and paid staff in the system we’re supposed to be trying to change?
Ah, I know the position of being that ‘negative person’ well. 😉 And my experience suggests a very similar reality to what you describe regarding peer roles in the system, unfortunately.
What you suggest certainly isn’t the whole problem at Alternatives… but it is a part of it, yes. People take on these roles and – for some of them – much of their systems change energy starts going toward keeping their job… It’s definitely a set up for a lot of people: Either live with being the ‘negative person’ in the room who’s at risk for losing their job or silence yourself in an effort to fit in better and hang on to it.
All of us who are being honest know what the “big top” is about. I’ll just stay out back at the freak show.
Sharon, I could come up with guesses as to how you might frame things, but although I know the gist, I’d be curious to hear your actual thoughts. 🙂 Meanwhile, I appreciate your creative continuation of the circus theme. -Sera
i think it is always the way when you want to challange the mainstream by going to mainstream events that you will be patronised and misunderstood.
It is part of social change to deal with this as best you can while also developing the outsider organisations and helping effective protest that challenges the mainstream.
Painful innit? I just want to throw eggs these days when I go to such events and hear nonsense. That, or I ask difficult but challanging questions that get noticed but not acted on.
At one conference I was at last November, a presenter (a cop who turned out to be supremely offensive) brought tomatoes for the audience to throw at him if they didn’t like him… He thought he was being cute and amusing. I really wanted to get up and throw them. Alas, I did not…
But when I did get the chance to be on a panel with him later in the day, I did make him squirm a great deal when I insisted on saying how offensive he had been. 🙂 That, at least, was somewhat gratifying.
Thanks for reading and commenting 🙂
Johanna, I think you are much more “anti-psychiatry” than you think you are. Too bad there seem to be so many fools around who are turning people off to this concept.
Thank you Sera. I could not agree more! I have heard many in the advocacy world speak about how we will be less effective as a movement if we spend all our time arguing over “semantics” rather than finding our common ground…Well, my ground starts with who we are and what has happened to us. We are people living our lives and reacting to trauma, stress and a sometimes very difficult world. The term “mental illness” and the “disease model” are front and center when it comes to systemic oppression and untruth. I stand with you in your quest to be heard and fully respected. Language is extremely important in our movement. Thank you once again!
Truth in Psychiatry, I’ve heard the same thing! Many times over. And my common retort is, “I’m not sure what unity means if it’s unity in name only.”
Thanks for reading and commenting. 🙂
About 4 years ago I managed at a small circus to be made out to be as a dysfunctional clown at a round table meeting at the local Nami Center with only 7 people including myself present . It was to be the day for family of the “mentally ill ” seeking help to be able to speak their concerns and be heard about their loved ones and to receive info on options available . I was allowed to sit in as a psychiatric survivor with lived experience who also had a family member under psychiatric care (taking their drug). I also stated I was there to try to help others as I’ve learned a lot during a 40 year struggle to be free of psychiatry.
There was the nami -manager a social worker who knew exactly what bi polar was cause her ex- husband was one and she nodded a couple times for emphasis. Plus two other retired social workers , both men who were volunteering their time to help out, one of whom who always cut short anything I offered up . A senior couple concerned about their 40 something diagnosed son . And tragically a young late twenty’s mother overwhelmed and in poverty who had just got away from an abusive husband with two children one under “psychiatric care ” as well as herself . She was desperate for help .
In Coos Bay Oregon with no Sotera or peer respite I saw there was no choice for the young mother under the pressurized circumstances but to accept the Nami Managers Kumbaiya hug and more psychiatric help for herself and children . She was like a deer caught in the headlights. I was the clown wanting to help, somehow caught in the same lights. I’ve stayed away from there since.
Thanks Sera , for your blog and for being you.
Thanks for sharing, Fred. Yes, what you describe is why I hang on to some compassion for many of the parents of NAMI et al… Many of them are just as desperate and lacking options as anyone else, and when someone reaches out a hand and says, “We have something to offer you,” I’m not sure what we could possibly expect them to do in most instances.
I appreciate your effort to try and then your choice to stay away.
Thanks for reading and commenting 🙂
I am looking forwad to a blog re ISPS since as I understood it, the aim was “the big tent” which actually meant that Liebermann was invited as a plenary speaker. Why on earth did the organizers chose him instead of you or me representing alternative organizations and hope for future??? And by the way, ISPS is also a sad example of an organization which politically correct invites some psychiatric survivors, but never as many as doctors and professors invited. I suggested that Daniel Mackler and Bob Whitaker would be invited since both of them present important data very based on lived experience in practice. So the idea about a big tent is for sure more big words than action.
What could be more evil than an institution that not only coerces, tortures, abuses and kills people, but also condemns and ridicules the victims of coercion, torture, abuse and murder? Psychiatry is pure evil that wears a mask of goodness. It is torture, that hides behind a facade of compassion. Is is abuse, that boasts of great caring. It is murder that claims to save lives.
As ever, the question remains: What is to be done?
While peripheral skirmishes and intermittent battles dot the landscape of the survivors movement, the foul dragon of psychiatry slumbers quietly in his filthy lair. This fire breathing beast rests undisturbed upon his hoards of stolen treasure. Like a giant winged serpent he sleeps with a wicked grin curling around his rancid lips. He has left death, destruction, and ruin in his wake. In his arrogance, he considers that his reign of terror will continue forever while he enjoys the spoils of the war that he began.
Nothing could be further from the truth. For you see, a hero is on the lose. A knight is on the prowl. His quest is clear, his destiny fixed. The time has come to slay the dragon of psychiatry.
Slaying the Dragon, This sounds like the start of a great book. Will you be writing it? 😉
My job is to slay the dragon. I’ll let others write the story. 🙂
I was invited once and once only to a conference where they wanted me to share my “recovery story”. I refer to it as my “healing and search for well being story” because recovery has become a buzz word for the “mental health system”. I refuse to use buzz words.
There were a number of us and it became very plain to me that one of the common themes to the stories of the others was “I finally realized how ill I was and started taking my medicine and now here I am all fine and dandy and I’m oh so very grateful that I was made to take the medicine”. I preface what I’m about to say by stating that I’m not against people taking the drugs if that’s what they want and it is really their choice. Taking the medicine is very seldom done by choice. Anyway, I support whatever it is that a person wants to use for themselves, even if I would never use it for myself. This is not the point of being a “peer”.
I could feel the cold and icy response in the entire audience when I began my “recovery story” by stating, “The hospital where I was held did not heal me. The psychiatrist assigned to my case did not heal me. A few of the staff were helpful but I healed myself. It was hard and difficult work but I healed myself”. I also stated that I maintain my healing and well being by means other than the drugs. The icy cold became even more apparent. There were no smiling faces looking back at me. There were a lot of very blank faces. It was at that moment, when I was standing there in front of that large group of people, that I realized that what the conference people really wanted was for everyone to spout the party line so that everyone there could feel good about themselves. Needless to say, that was the first and last “recovery story” that I’ve ever been asked to present to anyone and it’s fine by me.
I’ve made this same statement at meetings and presentations at the “hospital” where I work, the very same “hospital” where I was held. It’s always interesting to see the looks on the faces of people at those meetings when I say this. It’s never addressed and everyone always goes on with what they were doing before I spoke; it’s as if I never said anything at all.
Stephen, It’s kind of amazing that you’ve sustained yourself in that job for as long as you have! I’d expand on what you said above about psych drugs “very seldom [being chosen] by choice,” and say very seldom are they chosen by truly *informed* choice… A fair number of people seem to be “choosing” them (and even sometimes asking for them) because they’re not told the truth or told about any other ‘choices’… -Sera
What you say is very true. There is no true informed consent going on in the hospital where I work. The psychiatrists use the excuse for not giving informed consent by saying that the people they’re working with don’t have the capacity to understand informed consent and therefore they don’t give them the choice. On top of that is the fact that more and more people in the “mental health system” are getting caught up with the law and court system and are forced to take the drugs, no matter what. We have a large forensics section in our “hospital” but more and more the forensics “patients” are being put among the acute “patients” since there aren’t enough beds for everyone in forensics. It’s really a very disturbing situation and is not getting any better.
It is amazing that I’ve started my fifth year at that place.
What State are you working in? Is this a county hospital or private?
I work for a state hospital.
“This is not the point of being a peer’. I meant to say that peer work is about supporting people in their own choices even though you wouldn’t make the same choice for yourself.
Heh, credit for being offended and wanting to actually matter. I’m sure a lot of people that have dealt with this stuff would rather blow their brains than deal with true believers professionally.
I’m not sure about the language side, I agree with you but what can you do ? The entire thing is loaded, framed, jargonised etc etc. At the end of the day i’m not sure how you can _be_ a psychiatrist/clinical psychologist/etc talking at an event and not mention ‘disorders’, ‘illness’ and so on and so forth.
In the end I’m not sure how any of this can exist if you’re not getting up and claiming that there is something wrong with someone. I don’t believe in censoring or policing language but I can see how it’s definitely part of the problem. I guess you should just be able to counter it by pointing it out to others rather than enforcing the other side to shut up or use different wording.
Dear Sera, If you can feel the awe and vulnerability you are, Then you can see me. I believe you understand. However, most do not have compassion for us, those tagged with metaphors such as SMI and mentally ill. Oh, yes they have sympathy, pity But not compassion for our function as a metaphor for them is simple- by pointing at us the ‘mentally ill’ , those labelling us have no need to look at their insecure, fearful lives. ‘Mental illness’ is simply a denigrating description, a maddening metaphor, a pejorative psychiatric label for the stresses and strains of a person’s life beginning at conception such as the different timing of environmental risk factors such as toxins, infectious diseases during mom’s pregnancy, and/or trauma; physical, mental, emotional, sexual (allostatic overload, Bruce McEwen,neuroscientist) that a person Unconsciously Reacts To and is given a description of that lived stressful life a ‘diagnosis’ by a ‘professional.’ So What?! To continue to call that person ‘mentally ill’ is to be obtuse, be ignorant of that person’s lived experiential life. Allostatic overload effects (a person’s) epigenesis A simple straight forward No Nonsense paradigm, but probably too much clarity, no hiding behind metaphors which are basically untruths that perpetuate the money flow ’cause it is all about the money. Bought by Jeff Hays, http://www.jeffhaysfilms.com Deadly Medicine and Organised Crime- How Big Pharma Has Corrupted Healthcare by Peter C. Goetzche, The Book of Woe- The DSM and the Unmaking of Psychiatry by Gary Greenberg Keep It Simple, Keep It Whole by Drs. Lederman and Pulde pg. 21 ‘wealth, oops, we mean health industry…’ and a discussion on iatrogenics. For me No More Hocus Pocus Diagnosis and No More Show Them My Money. There is a reason Lucy advertised Psychiatric Help? for 5 cents, Yes Only 5 cents. Have a great weekend my friend. Kurt E. Wilkens