Showing 19 of 19 comments.
GREAT article! Thank you Leah!!
sera thank you so much for sharing this horror story. even though there is nothing to like about it – what i really enjoyed reading is the way you unmask this whole enterprise and expose it for what it is. my highlight are your precise portraits of griffs, steves and ashleys of this world. there are too many of them, they look young and innocent but cause serious damage that goes entirely un-documented. it’s time for them to be studied and microscoped for who they are instead of them being further equipped to study (and treat) us. the nightmare scenario that this all turned into is material and extreme but i have to say that it bitterly reminded me of far less spectacular, every day emotional and mental risk that entering such spaces can mean for us. some of us interfere with this daily in our attempts at dialogue and collaboration. i understand you didn’t go there to collaborate, but your account reminds me on some of my own experiences of working in so called collaborative research. i could write a novel about that but as that is my most frequent source of income, i kind of put the emotions away and do my best to focus on the ’cause’. but too often i find myself surrounded by steve, griff and ashley and even if all goes well and my perspectives even ‘win’ – too rarely i can afford asking myself wtf i am doing here. sorry to be this pessimistic by what happened to you gives a naked picture of the worlds there are in between humanity on the one side and what sells as ‘mental health care’ (in any format) on the other. this account is an awakening reminder of who rules at the end of the day, so thanks again for this sharp and detailed and greately written analysis, this is so important to remember.
thank you auntie pychiatry for articulating what i also find the question of our time: How do we break out of this habit of fighting each other and hollering into the void?
but even so irit i wonder why is it always more important to detect even tiniest traces of ‘reformist content’ among us and make a clever statement on that than to move on with our work, and most importantly with our joint work. the question is not directed to you but to everybody whose engagement stops at that level or whose comments seem more like a self-fullfiling excercise rather than a genuine effort to advance our collective thinking and action, let alone support and cheerish each other’s achievements on that way…
irit thank you for the ‘spotlight’ and also for engaging in the discussion here. i share you stance that things are getting worse. to me each and every effort to do something against always more subtle psychiatrisation of all our lives is valuable. but we seem to be much better at microscoping each other’s work and looking for ideological divergions rather than praising our achievements regardless of their size, let alone strategising together at times of atomised and competitive ‘peer’ careers. there will never be one right way in this battle and we all have our different interests and strenghts and preferences. it is easy oldhead to lay back and perform surgery on ‘spotlight’ until you declare it wrong (!?) and it is sad to see irit justifying herself and even declaring ‘reformist content’ in that piece of work that is everything else but ‘reformist’. wtf? what is your personal contribution i wonder to bringing psychiatry into the dustbin apart from assessing other people’s work and telling us how things should be?
Sorry to remind but what is now labelled ‘peer run respites’ has been around longer and has preceeded the phenomenon of ‘peer specialists’ working in the system to make it better. In the light of that historical development it looks like ‘peers’ are much more likely to ‘prove competent and valuable’ to end up within the system as peer specialists than to create our own sustainable alternatives.
why is it that psychiatrists now lead the human rights investigations? what qualifies them for that kind of work, especially in the positions of ‘principal investigators’??!! this is sooo wrong and unless it stops our human rights will never be properly addressed.
sera, i referred to several other comments including yours. never meant to say that people should stay silent or ignore content of this blog or its parts. on the contrary – i think that this can and should be taken forward in many different ways. i tried to raise the difference between taking the issues on this list forward or pulling them backwards. to me there are far better things out there to challenge than au’s suggestions, and personally i find their suggestions helpful simply because they go beyond fixing what can’t be fixed to begin with and because i greatly value that kind of effort. i’m afraid i can’t express this any better than what i already had written.
Thanks to Tina’s comment I am back to this thread which became rather upsetting and reminded me why I never wanted to publish here. I wonder why can’t we just appreciate each other’s efforts instead of engaging in discussions that seem to be self-fulfilling and lead nowhere. As we all know – envisioning future without psychiatry or mental health or however we define it is so much harder than criticising and exposing psychiatry, capitalism etc. Investing into the articulation of several core issues is so much harder than elaborating on them same issues with more information and opinion. Coming back to Au’s list in order criticise it or take it apart will not bring us further, on the contrary – this kind of reception prevents people from daring to imagine, put their questions and visions into words and share them. Why are we so hard on each other when we know how bloody rare it is to read something that goes beyond always more evidenced and eloquent criticism of what we all know far too well? Why can’t we just cherish when someone moves towards breaking new ground? That is always risky and never perfect and above all – never for one person to achieve. Can’t we just take some break from our little egos and have guts to take this kind work forward rather than analyse into detail what was misunderstood and omitted on the way and prove how smart we ourselves are? Commenting on this site will change nothing. And these in-depth point by point text surgeries just put people off from contributing. Especially people from the outside of the US if that matters at all…
thank you this so much! reading this made my day and really cheered me up. this is such a good and rich start, hope that it will be widely used and elaborated further. many, many great points, also in comments.
will, thank you for presenting this relevant reasearch and its findings. however, as i am currently undertaking some search into studies on this topic i need to oppose your statement that this “is the largest study to date on the subjective experiences of antipsychotic withdrawal, and the first to explore how people who have successfully stopped antipsychotics are able to maintain their well-being.” back in 2004 a UK based survivor team coordinated by jim read conducted a research into the ways people cope with coming off psychiatric drugs. that study comprised 204 short and 46 in depth interviews with service users and the excellent report “Coping with Coming Off” was published by Mind in 2005. larsen‐barr also refers to this source. jim read extended the findings of that study into a comprehensive book publication “Psychiatric drugs: key issues and service user perspectives” that was published in 2009. from the perspective of my own and other survivor researchers’ struggles it greatly upsets me to see how our pioneering work gets erased as soon as our topics finally find their way onto the dominant research agenda. it is certainly positive that the way we experience drugs becomes the topic of research in 21st century but lets pay some more attention and appreciate our own history while applauding this new development. if we don’t do that i don’t know who else will. hope u don’t mind me telling you this.
it cannot be said enough times how brilliant this article is. above all for its differentiated and accurate analysis of core issues involved in the construction of peer- workforce as a great new psychiatric brand. i totally understand that you never again want to be a ‘consumer’ in this way but dare saying that there must be other ways beyond the scenarios that you describe to at least document your knowledge and your perspectives. i am based in germany where peer-workers epidemics has started much later but is about to successfully erase any collective user/survivor voice that there ever was in this country. the experience and the analysis that you present in this piece are very much needed and i wish that you will find a way to continue contributing your thoughts outside the roles that system designates for us. keep up the good work, katie and also thanks to everybody who commented on this thread. if i haven’t just survived editing a book last year i would invite everybody to jointly create an international anthology to expose peer-support and other ways we get inserted into existing systems of psychiatric ‘care’ provision (and research!). it’s about time to speak our truth and suggest different ways forward.
if sera’s english is being corrected – i wonder what will happen with mine. that is one of the reasons why i am reluctant to comment here anyways and the last sentences of the previous comment just nurtured my nervousness.
still i wish to express how great this text is. the paragraph that has been found problematic is one of my favourites. thank you sera for taking time to write this clear, clever and much needed counter-analysis!
‘givemeyourking’ there is a lot we can and should do when our loved one is suicidal. ‘watching a person 24/7’ is no response to suicidality. supporting somebody to live is rather different from physically making sure that they don’t kill themselves. the latter also doesn’t work long term as we know. there is a lot more we can offer to each other than the fake security of the psychiatric ward.
doritt thank you for making public what happened and for all your work.
‘Service user involvement’ is no magic bullet that can improve projects retrograde in their very nature (such as DSM and ICD). As Theodor Adorno famously said – “Wrong life cannot be lived rightly.” In the context of what you are trying to do here – this means that fundamentally wrong approaches cannot be rightly applied.
I really did not expect this site to platform these kinds of intiatives.
thank you so much, lauren for writing this great article! when you say: – “people’s stories—simply dismissed as ‘anecdotal’ and therefore justified these accounts, in the master’s mind, as non-actionable intelligence that was of no consequence in a policy arena” – you touch the heart of the problem with all “evidence” in psychiatry. how do we change this? your presentation of the facts and your analysis are one effective way to do it. this is encouraging and much appreciated!!
Of course the prohibition of force would not solve everything but it would leave biopsychiatry without one of its two most powerful weapons (another one is pharmacological industry). Without that kind of backing – the biomedical model of mental illnes would compete on equal foot with other understandigs and approaches. And we know how strongly ‘scientifical’ and ‘evidenced’ and ‘successful’ that model is. I don’t mean to end up in the discussion of what is more or the most important but biomedical psychiatry does not operate on its own. As you say – it is an institution. It is well supported by not only the option but the TASK to excercise social control in form of forced treatment. Once that power is taken away – people would have to be persuaded on the basis of what it has to offer, not on the basis of fear. That kind of battle would be fair and much harder for psychiatry to win…
I do fully agree with Rene that only when there is no more possibility of forced treatment – the psychiatric profession will have to re-define or re-invent itself. As long as they are allowed to impose treatment, they don’t have to change anything. But advance directives are just one avenue towards that goal. Also, we all have different interests and skills and only this one life so not everybody should be asked to work on one same issue.
Thank you for a clear and very relevant account, Jim! Relevant – because such developments are not rare but they are rarely openly and honestly analysed. From the painful perspective of somebody who was among the founders of the Runaway House Berlin – I can say – it is better to close the project in dignity than to let it run under the same name but not how it was meant to.
Around 2002 – six years after the start of Berlin Runaway House several people who conceptualised this project and invested years of commitment before the house could finally open – have jointly left. At that time it was already clear that the project is taking a rather different direction in comparison to its first years. This process reached tip of the iceberg in March last year when the grounding rule that half of the workers should be psych survivors was formally abolished. That decision was a logical consequence of all the other substantial changes that step by step took place in the course of 12 years, so nothing really new. However, the fact that this was not publicly communicated felt like the meanest part of it. It confirmed that the project still profits from its ‘anti-psychiatric’ history and sells itself as such, whatever that means. A Runaway House worker who took part in one of the panels of Mad in America film festival was announced as working “in the Runaway House, which is an ‘antipsychiatric facility’ in Berlin that works without diagnosis and supports people to come off drugs. At least half the staff are ex-users of psychiatry.” (https://madinamerica.com/speakers-panelists/) The festival took place 7 months after this statement was even ‘officially’ no longer true. As a result of some pressure to at least stop hiding their decisions – the Runaway House team finally announced this change on their website (http://www.weglaufhaus.de/). Discussing the justification they provided would largely exceed the scope of this comment.
What I meant to say is – however sad it is that people will be denied access to your project, you also prevented Soteria Alaska from getting credits and paying salaries for a kind of service whose values and principles you don’t share anymore. To me, this is something to respect and add to lessons learned.
Warm greetuings from Berlin