When “Recovery” Feels Like a Trap

By
-
64
403

On the week the American Psychiatric Association meets in San Francisco to celebrate the unveiling of the DSM-V, I want to share a few thoughts on some recent “diagnostic-related” experiences in New England.  Unable to join any demonstrations this week on the West Coast, I’ll send these words out to the world in the spirit of solidarity!

I am part of a group of folks working on a new community or “peer’” bridging project in Western Massachusetts.  The bridging intended in this work is in support of people who are hospitalized and would like support transition back into the community.  The initial stages of this project, however, have had us in quite different “bridge building” situations — with hospital management — to discuss our upcoming roles.  These meetings have often been stressful and emotional experiences for reasons I will explore below.

Recently our group was asked to present a “recovery” training to employees at a local psychiatric hospital.  We were invited to talk about general ideas and our personal experiences.

After sharing our thoughts, and intimate details from our own lives we learned that our words were sought out less in earnest but more as a test of our credibility.  The small group of upper-management clinicians admitted they had asked us there on the terms of a recovery training as a way to “screen” us.  Our reputation for being potentially venomous and “anti-psychiatric” had, apparently, preceded us and it was our task to — unwittingly — prove we were credible enough to address the larger staff.  The ill feeling from this meeting stayed with me for days after.

In short, I felt exploited.  We were working from a deficit.  The five clinicians present actually seemed a bit moved by our words, although their admission that we had essentially been asked there on false pretenses only diminished one clinician’s claim that, “we actually have a lot more in common than not.”

I feel compelled to write about this experience for both Mad in America regulars and the hospital staff whom we met with this past month because I genuinely believe their underlying intent was not bad. In fact, judging by the words they chose in the meeting I could easily imagine the reasons many of these people ended up in these roles was through genuine concern for “helping” other human beings.  Meetings such as these carry stresses for us as peer advocates regardless of the intent of those with whom we meet.

If you’ve ever had to talk about difficult experiences in your life and speak about them in ways that defy the stereotypes and connotations these experiences evoke for most people — you might understand.  I imagine testifying in a courtroom and trying to state things that bring up strong and deep emotions with a delivery that tries to remain as unemotional and rational as possible is similar.

Speaking to directors of behavioral health or clinical or nursing supervisors in psychiatric hospitals has felt like that for me.  We were compelled to speak about some of the most devastating, distressing and emotional times in our lives in as credible, articulate and well-stated language as possible.  It’s like time-traveling — with all the exhausting implications for a person moving between different environments and bodily states at breakneck speed.  Oh; and there are things at stake in just how well you hold yourself in these moments too.

This brings us back to the hospital conference room and the so-called “recovery training” we were asked to provide.

Much of our presentation included such feats of time-traveling — and more specifically the ability for us to put words to some of the most devastating experiences in our lives.  It required us to explicitly and implicitly say, “And, yet; here I am speaking and living life fully, defying those expectations many people hold for those other people diagnosed with a ‘serious mental illness,’ or who suffered years of feeling suicidal, or who experienced dozens of hospitalizations.”

In many ways we as peer advocates were moving out on a limb to show such vulnerability to people whose roles remind us of the very visceral experiences of these times and the utter hopelessness we felt living in them.  A large part of our work as advocates, including sharing our ideas with those who work in the mental health system, involves this risk of vulnerability and, for me, also the challenge to relate to those people labeled “clinicians” (or psychiatrists, therapists, psych nurses, etc.) as human beings, rather than just what they might symbolize to us from the past.

When one of my colleagues asked in the middle of the training why we weren’t meeting with more of the staff, as had been our expectation, rather than just the five folks in supervisory roles, the response one clinician provided revealed that this was intentional.  In summary, she said that our reputation of being “anti-medication” preceded us and that these five folks wanted to meet with us first under the guise of a training to see if we were, in fact, as hostile and unable to listen to their viewpoints as they imagined we might be.  She admitted this and in the same breath suggested that we, in some way, defied these stereotypes in how we spoke about our lives and ideas on “recovery”.  Unfortunately, these words could not erase their original deception.

We are already used to being discredited for our psychiatric diagnoses, adding insult to how much those labels have failed to faithfully represent us in both the past and present.  Now, we are faced with overcoming a lack of credibility because honest talk of the abuses we’ve suffered, the anger we’ve felt and the changes we hope for (mixed with rumor and assumptions) sometimes seems to lead people with roles in the mental health system to believe we are obstinately “anti-them.”  It feels as if these folks are sharing some sort of case file and ‘diagnosis’ that has been applied to our whole organization, and I hope this doesn’t make me sound “symptomatically” paranoid.

Although different in some ways, reflecting on this meeting reminds me of an experience my friend encountered when visiting an acquaintance confined to a psychiatric ward.  She and her friend were trying to talk privately in a cafeteria (the designated and not very private visiting area on that particular floor) about some very traumatic and emotional experiences when a nurse came out of the nursing station, which looked more like an observation deck looming over the cafeteria than a separate room.  She addressed both of them by saying that the person locked on the ward was acting very paranoid and inquiring if she didn’t she think she could use some more medication to address that behavior.  Her response was, basically, “You keep staring out of the nurses station after whispering things to the other nurse while my friend and I are trying to talk through some distressing stuff — wouldn’t that make you paranoid, too?

The point here is not the nurse’s apparent rudeness but rather that people in roles of power in the mental health system often don’t realize how much complicity they have in actually creating the symptoms they claim are biologically-based in individuals with psychiatric labels.

I’d like to challenge the clinicians in the “recovery training” scenario I’ve outlined to think about their roles in the system and how much our interaction may have benefited without such prescriptive mistrust and increased honesty as a baseline for dialogue.  If we are going to have any chance at seeing each other’s perspectives first, we — as peer advocates — must be treated with the respect and dignity that would be afforded to anyone else without these labels (both psychiatric and anti-psychiatric).  Then we might agree to approach each other with genuine curiosity and humanness, values through which the opportunity for growth and understanding can exist.

To those with whom we met: I hope you will be open to hearing this and moving forward in a way that creates more space for us and the many people like us to share the wisdom gained as time travelers who can reach back into our histories and pull on experiences to which you do not have first-hand access.  And, with such respect acknowledged, my ears are open to learning from you, too…

 

***

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.

64 COMMENTS

  3. Sean,

    I’ve thought for a long time that the quickest way to improve the mental health industry would be to require every new-minted psychiatric attendant, tech, therapist, psychologist and psychiatrist to spend a week in a tax-supported psychiatric hospital, preferably after having been brought disheveled and handcuffed for admission by a law enforcement officer.

    You might suggest to the clinicians in the “recovery training” scenario you described that they voluntarily undergo this experience as part of their training. It might increase their sensitivity to the relevant issues.

    Best regards,
    Mary S Newton, PhD

    • Boy, what a great idea, Mary! But I think they need to spend two weeks on antipsychotics as well, including a week of being threatened to return to the hospital involuntarily if they don’t “take their meds.”

      It’s not paranoia if they really are out to get you!

      — Steve

      • Steve, it might not even take two weeks on antipsychotics to bring some light to dark places. I once heard a psychiatrist say he took one dose of Haldol just to see what it was like, and it took him a week to get back to normal. To his credit, he was never quite the same “normal” again.

    • Hello Mary,

      Thanks for sharing your thoughts!

      I know that a lot of us in western MA often have conversations (like Steve) where we would call for the need for psychiatrists to experience the “cocktails” they put into others themselves. The fact that this class of people can claim to be the experts (much like many people who egregiously take that title) have in most cases never even experienced these (often disorienting, painful and un-paralleled) chemical interventions themselves.

      Thanks,

      Sean

  4. Sean, that was eloquent and brilliant and so needed to be written! I hope the staff who you met with understand how the attitudes that led them to behave so dishonestly with you are indicative of what’s so fundamentally flawed about the worldview that created the disaster that is the public mental health system

  5. As always, I cant stand this sort of stuff. The professionals shouldn’t be able to go on denying the trauma and suffering they cause. People who have been wronged by them shouldn’t have to kiss their ass and assure them that they are O.K. with it in order to work in mental health settings. The professionals should be forced to acknowledge the harm that they cause and have to work toward correcting it. And, of course, I say that all the time. Just saying it again. They don’t have a right to go on pretending that they don’t hurt people, screening ex-patients to make sure they are not bitter about things they ought to be bitter about. The entire meeting should have begun with apologies by them and an inquiry into how they can make it up to all of their patients and former patients, as well as how to keep from ever doing it again.

    But, no. Unfortunately they are allowed to deny the obvious, pretend that treating people like subhuman freaks is O.K., forcibly drugging them, violating their human rights, etc. Nobody is forcing them to have to confront the reality of those facts, because they are legally allowed to reject it.

  6. “The point here is not the nurse’s apparent rudeness but rather that people in roles of power in the mental health system often don’t realize how much complicity they have in actually creating the symptoms they claim are biologically-based in individuals with psychiatric labels.”

    They are not that stupid. They know full well what they do. When a parent antagonizes a child, they know what they are doing and that they wouldn’t do such a thing to an adult without expecting the obvious, but when that obvious outburst occurs, the child is punished. It’s not that mental health professionals don’t know the reality of what they are doing, it’s that they consider the patients to be lesser people and therefore don’t believe that treating them like “normal” people is necessary.

    I’m sure that the nurse knew that she was causing the patients paranoia, but because the person was a patient and not fully a person, it was the paranoia and not the cause that mattered.

    • Jeffrey,

      I appreciate your comments above about professionals not denying the harm they’ve been complicit in–I totally agree. It reminds me of the idea of reparations– not necessarily even the financial restorations (which would be great for the legacies of incarceration, slavery and forced hospitalizations endemic to our nation) but at least the idea of respecting and revering the pain we’re been through and acting humbly in acknowledgement of it.

      That’s not so much to ask, it sometimes seems to me. And then, another part of me sees the same old oppressive bullshit (largely addressed in the blog and your other comments above) being repeated in slightly different ways that’s been going on for decades that just prove there’s not enough space away from the atrocities of the past for professionals to REALLY have any emotional space to act this way.

      Many state hospitals are dismantled, yes, but the modus operandi that allowed those places to exist in such squalor (that “the mentally ill” are a biological subhuman class of people) is very much still functioning.

      Thanks for sharing your thoughts!

      -Sean

  7. It takes courage to build bridges with those who would potentially malign one’s motives. It takes grace to time travel to the most difficult of parts of a personal history with clarity. It takes an inner knowing to let respect accrue rather than come in an upfront payment.

    It’s a diplomatic position and I’m so thankful that in Western Massachusetts there are those ready to progress in this underrepresented field of endeavor. Keep up the good work, Sean (and team)!

    • Thank you Emily! I’m really gracious for these words of encouragement–sometimes I feel like it takes a really uncommon mixture of extreme patience and gall to feel OK being a “time traveler” communicating these things in a psych hospital as someone not confined there. …and I can’t claim I always have this ideal mixture in balance.

      Thanks,

      Sean

  9. JeffreyC,

    “It’s not that mental health professionals don’t know the reality of what they are doing, it’s that they consider the patients to be lesser people and therefore don’t believe that treating them like “normal” people is necessary.”

    Agree 100%. Once they label you, they see you as “less than human”. They tried to make me feel that way many times. They lost :D.

    The analogy with the parents is a good one. We all have gone through that moment of our lives in which we stopped seeing that parent (or mentor) as the “ideal, God like” figure we thought they were. In the worst case, such as that of some truly bad boss, we started to see them as the opposite, evil creatures that manipulated us for as long we let them do it.

    With psychiatry and psychiatrists I have reached the conclusion that the average psychiatrist is evil. That is not to say that I don’t think that there are some psychiatrists that genuinely care about their patients, but I think that they are a tiny minority, so the approach of assuming that the average psychiatrist is evil (and then be pleasantly surprised when I find one who isn’t) is less disappointing than believing that the average psychiatrist is good and then finding out that most encounters with a psychiatrist turn out with the psychiatrist abusing you.

    That is not to say that psychiatrists don’t have to be engaged. They have, but they have to be engaged as “enemies who might be transformed by listening to the other side” rather than “empathic figures who care about their patients”.

  10. I think there’s a tragic assumption being made here. This assumption is that by talking rationally about our experiences and trying to explain our position to people in the system and find common ground, that real progress is possible. I think the people in the system have already proved that they’re “anti-us”. They will never settle for a reality where “medication” is something people reject, “mental illness” is not believed to be a biological defect, and “recovery” isn’t on their terms. They will always be the bearers of the prognosis and standards for what “counts” as “mentally ill” and “in recovery”.

    The fact that you and your colleagues, Sean, have to turn off the emotional aspect of your communication is a red flag. Already, these people aren’t interested in relationships between humans, but on a performance of competence, on their own terms. They want us to “prove” that we are “legitimate” in order to participate in a game that they are running. The real conversation isn’t something they’re prepared to have, or even remotely understand. Because the REAL conversation is between human beings, is ABOUT the very abuses that they continue to blindly perpetuate. But they don’t want that conversation, because they don’t want to be touched by our emotions, because they consider our emotions invalid or irrelevant. They are authoritarians.

    They have abused us, and continue to do so. I think they have proven through this abuse that they are the wrong people for the job of helping us, regardless of their good intentions. People can genuinely believe they’re helping someone else while doing something atrocious to them.

    I believe our energies are better spent building alternative social support networks among like-minded allies who value free emotional communication, deep listening, and empathy. Not authoritarian professionals. Their job isn’t really to help us, IMHO — they only think that’s what they’re doing, and have successfully convinced themselves and much of society that they are in fact carrying out this mission. When the reverse is true: they’re oppressing us.

    This probably sounds very black and white, but consider that the abuses inflicted upon us are also very real, very specific, and justified emphatically and without subtlety by those in the system. I believe they’ve long since lost the right for us to give them the benefit of the doubt.

    • Hello S.A.,

      I appreciate your thoughts and can’t say I disagree with any of them! Most of my work (and that of the comrades I work with) is spent tirelessly building “alternative social support networks”: we’ve been trying to create more peer support groups that exist outside of and against the oppressions of biological psychiatry, a peer respite that seeks the same in more of a home setting and community centers throughout western MA that seek to unite people touched by oppressions of all kinds (and especially psychiatric) to move towards a better kind of world.

      I have little faith of working on the terms of authoritarians to effect real change. That’s happening outside of these hospital meetings, on our own terms. But, most of the focused oppression happens not in our “peer” communities but in and among these institutions–to reach out to people currently kept there and share alternatives and spaces to move towards that are affirming and empowering rather than maintenance-based and infantilizing is, I think< pretty powerful and necessary. But, I also fully hear your hesitations and I share many of them as well! Thanks, Sean

  12. Although I can certainly see that trying to create alternatives is very important, this article demonstrates that trying to accomplish something constructive while trapped within the system we should be fighting is a waste of time.

    If you need permission to do your work from people like this, it will be almost impossible to accomplish anything. We are not going to be welcomed by the people who run this system. Why should they do that? No matter how “reasonable” we try to sound, the fact is that we would not be there to help the people in power keep that power.

    And I don’t agree that these people really mean well. They know perfectly well what they are doing, and I think in any contacts we have with them, it is absolutely necessary that we keep that in mind.

    • Ted,

      There’s a part of me that agrees with both of your major points. However, there’s a large part of me that does not.

      There are absolutely times for working solely from the ‘outside’ and I think it’s important to have people doing that. However, if we were ALL working solely from the ‘outside,’ what of all the people on the inside that we’d be leaving behind? Although I’m not fond of the ‘peer bridger’ name (or any ‘peer’ titles at this point), much of this IS about building bridges OUT of the system. There are many EXPRESSways IN, and our ability to work on the paths OUT is diminished if we don’t make space for ourselves to be in all sorts of different settings. I don’t particularly agree with the idea of ‘peer roles’ existing in traditional settings where the direct employer is that traditional provider, but for reasons described above, I *DO* agree with going into these settings under an independent organization/group which is what we are trying to do in the situation above.

      And when I talk about ‘bridging’ or creating pathways out, I guess I am talking about creating pathways NOT Just for people who have been hospitalized, etc. In some ways, I’m also talking about the PROVIDERS. I guess I disagree with you as well that many of the people working in the system don’t really mean well. There’s lots of layers there… Yes – and without even necessarily talking about this particular situation – I think they sometimes have an awareness of their abuses of power, feeling better than, judging, etc. But I also think that everyone at every level has been trained and pushed by the system whether they’re working in or hospitalized in/etc. that place. There ARE those who enjoy that power, status, money (found only in the higher ranks, etc.), but there are many who also feel stuck, trapped, pushed, uncertain, wanting to ‘help,’ etc. who we could in fact impact and work with to make things different.

      If ALL people working in the system didn’t really at least mean well, then what of so many people writing on this website who are still working in the system? What of me? I gravitated toward working in the system because of my own experiences, spent some substantial time there, yes was indeed pushed to do some things that I feel were abuses of my power and that I now deeply regret, got out of the system and now work in a very different way. During my time working ‘in the system,’ I also was in a place to hire many people who were wonderful and absolutely meant well and were grappling as I was with what to do and unlearning so much of what we’d been fed by our whole culture. As I continue to walk through this struggle, I’ve met many more people who are grappling, wondering if they should be staying in the system, worrying about who they’d be leaving behind if they did go, trying to figure out what role they can play in change…

      Now, is that equal to the people who are hospitalized, forced, coerced, medicated to the gills, etc? Absolutely not. The power differential is tremendous between even the most entry-level mental health worker living in poverty and without many other job options and the person forced into the hospital. However, painting the provider group as one-dimensional, intentional villains… Well, it brings forth a cartoon caricature for me that simply doesn’t reflect the complexity of the truth of it all.

    • Hello Ted,

      Thanks for your comments. I think I can, thankfully, counter much of what you say– which I largely agree with in general –by saying that specifically (1) we’re being careful, as Sera wrote, to be a presence in hospitals but NOT working trapped in the system in the way of being employed and restricted by the hospital and (2) that influencing these clinicians to any degree by respectfully and calmly pointing out the things they say or do that contradict their mission to support people to so-called “recovery” is hardly a waste of time.

      If we were working under the misapprehensions that clinicians are always well-intentioned (never something that I would think or say) and within their rules, as you seem to suggest we are, then YES I could imagine all this being a waste of time.

      I would challenge you to reread this article not as proof in itself that this is a waste of time but that it is an opening onto other possibilities on OUR terms and not those of the system.

      Thanks,

      Sean

  13. Sean – thank you for presenting this case with such clarity and reason. It is disconcerting that those who have been labeled by the “professionals” are automatically seen as untrustworthy and lacking credibility. I am so sorry that you experienced this again at the hands of those who say they are “helping”. My hope is that your essay will help some lights go on for those who see fit to treat anyone with such disrespect.

  14. We have a system which is fundamentally flawed it indoctrinates all who enter into it and does a pretty good job at polluting the minds of those who only have peripheral contact with the psychiatric system. What is interesting though is the entryway, reminding me of times past when we had doors for ‘whites only’ and … you get my picture. The staff door is magnificent offering power and prestige, job opportunities and a monthly wage package and big pharma perks. The patient doorway however, is a different story altogether. Stepping through that doorway stripes you of your power stigmatizes and defiles you by labeling you from – and I just have to use Jim Gottstein’s words from his Occupy APA 2013 speech – “the Book of Insults” that allows for legalized human rights abuse to be perpetrated against your body and mind.

    Yet I too go back into the system discussing/debating/ teaching that there are other ways to help those who suffer than the psychiatric bio/genetic medical model way and your blog got me wondering why am I doing that. It’s not such a stupid question to ask myself because I personally do not think that psychiatry as a system has any interest whatsoever in giving up it’s way of being – ever, psychiatry as a system will have to be forced to change. Yet there I am talking about worlds rich in meaning, context and understanding, not about brain defects and genetics. I talk about the appalling consequences that the medical model (drugs force ECT brain damage) does to people, I talk about human rights and is it all in vain? Yes to a large extent it is, because one of the major reasons context and meaning is so threatening to psychiatry is that the justification for the medical model’s existence is based on the importance of social context and life experiences as not being meaningful and intelligible.

    So why am I bothering?

    I think of those who manage to break free of psychiatry like I did when I heard for the first time about recovery and how that day was the day my world changed from grey to color. I think to myself when my PowerPoint is rolling showing there is another truth, that out there among those listening is perhaps someone who will leave that day and it will be the start of their emancipation. I also believe that there are staff who are, despite entering through the grand doorway of power and prestige and the temptations that brings with it, prepared to acknowledge that the system is morally and ethically flawed. I like to think perhaps one of those staff members will leave my talk and I might meet them one day as a true ally.

    One can hope that those you spoke to Sean feel shamed. Sadly one of the other effects of entering through the staff doorway is carte blanche to not feel that meeting people they have previously labelled with suspicion and disrespect is reprehensible, on the contrary they can always say it is not us that are paranoid… and the tragedy is they would get away with it.

        • Hey Olga,

          Thank you so much for these powerful words. They reflect a lot of the thoughts that go through my head as I do this sort of work (alongside the less convoluted non-clinical “peer” support spaces I work within).

          I second your response to your own question, “So why am I bothering?” I KNOW that there are people sucked into the roles of power in the mental health system and people sucked into roles of dis-empowerment that are looking for “the start of their emancipation” but maybe haven’t known where to begin until being presented with some ideas of the subject. I know this because I meet people like this, emerging from these two opposing roles, weekly.

          I also try to remind myself, as a lot of other people I struggle for meaning with, that the World, and the world of good and evil, is far greater than the world of psychiatry–although psychiatry as a system may be largely steeped in the latter. And, remembering this I believe makes us better and non-judgmental advocates for humans and human rights.

          Thanks,

          Sean

    • Medical model, or other, psychiatry, today just as 200+ years ago, is the result of our society neither being able nor willing to accept responsibility for its own dysfunctional mechanisms, why it, when a certain group of people, who saw, and still today sees, a chance to make a living by promising to remove the reactions to society’s dysfunctional mechanisms, reminding it of its responsibility, from society’s view, happily embraced, and still today embraces, this group of people and their offer to help — society, not those who challenge its grandiose self-image. Something that is the direct result of such thorough narcissism on the part of society, and that is founded on nothing but this, society’s thoroughly narcissistic need, can impossibly ever be anything but disrespecting, oppressive and abusive toward the other.

      I think, we’re fooling ourselves if we believe psychiatry can be changed. Psychiatry, the institution, is synonymous with totalitarian oppression. That’s what it was designed and created to be, and that’s what it is: totalitarian oppression, silencing those who challenge society’s status quo. When we’re talking about wanting to change psychiatry into something that would really be of help to people in emotional distress, what we’re saying is that we want some sort of respecting, empathetic and kind oppression. Respecting, empathetic and kind oppression… Take a moment to think about that.

      That said, I’m talking about the institution, not the individual working in it. There have always been, and there still are, individuals among the professionals, who know how to, and do help people in emotional distress. Instead of helping society get rid of these people. But unless they’re willing to compromise, to sell out, to betray themselves and the people in emotional distress they want to help, they will, sooner or later, have to leave the institution psychiatry, the institutionalized oppression, and do their work outside of it.

      • Thanks Marian! I think this is pretty well said.

        My hope in throwing myself in these situations is to act as a representative of many others whose voices can’t, haven’t or won’t be heard by people in roles of power in the mental health system. And, I demand to be heard so that those humans who still exist with empathy, compassion and the willingness to be emancipated behind these professional positions may some day see that to uncritically assume these roles is to BE complicit with oppression. And, not, ironically, complicit with “helping” fellow humans that so many people are deluded to think they are actually doing in so authoritatively assuming such roles.

  15. Very moving piece. Thank you. The day I escaped the clutches of psychiatry was the day I started to live again, to feel again, to dream again and to be me. We won’t be labelled, we won’t be diagnosed we won’t be told our condition is *biological* what, are we washing powder? We are humans and sometimes life’s traumas overwhelm us and we might become psychotic but there is nothing biological or genetic about this it is nuture, environment, life’s pitfalls. We don’t want to be medicated we don’t want to be silenced or ignored we want to be honoured as special beings and we want to recover in our own time, at our own pace, on our own terms. Let the clinicians prescribe and the pharma companies rake in the $ or the £ please leave us be. We’re ok you know. http://www.judithhaire.com

        • Thanks Judith for these statements!

          I was able to share how I escaped the clutches of psychiatry–and how IT almost killed me and NOT the so-called “biological” mental disorder–with a group of mostly clinicians. And, I was on a panel so I could not be silenced and so, instead, many of them actually listened… and maybe some of them actually HEARD.

          • Thank you so much Sean. You’re right. You could not be silenced and you should never be silenced. Listening, hearing, eventually this message must hit home. This biomedical model of so called mental disorder is being dismantled and discredited and I wish you continued courage and strength, shoulder to shoulder.

  16. Dear Sean,
    Thank you for writing this and being so honest with your feelings and deep desire to make things better in the system. Your words are eloquent and full of passion and integrity. It takes a huge amount of courage to go back into the belly of the beast which tried to eat you alive. Thank goodness, you survived, and you are stronger and wiser for having lived through those atrocities. You and I are both lucky. So many others did not survive and still do not to this day.
    love, Dorothy

    • Thanks Dorothy!

      I’ve been trying to spin my words to clinician’s as a survivor of suicide, psychiatry and emotional distresses that THEY are the lucky ones for having me and other deeply insightful and powerful humans in their company to share our stories. And I’m trying to find ways to respectfully remind them that it is, indeed, THEM who are lucky that we bother to spend such efforts talking to them. I look forward to seeing you soon, sharing more stories, more laughter!
      Love, Sean

  17. This is the sort of thing that “good faith partners” don’t do. Elsewhere I was reading a call for a balanced conciliatory tone toward the institutional professionals that presently hold all the power. The author reminded readers that we all make mistakes, and we must be humble about what we know and that there’s lot that can be learned from psychiatry, neuroscience, etc.

    All of the above is true. Except its not the whole truth. There is a massive power-imbalance between the “voice” and the power of the dominant professional institutions and the voice of consumers, or the voice of direct therapy (not medication management) practitioners. The institution of psychiatry and the institutions of pharmacology sometimes (too often) treat consumer voices with prejudice and bigotry. These institutions wield their immense power to distort data, persecute critics, marginalize the experiences of consumers and spin the facts.

    They have a power to do this that we, who are on the side of skeptical, critical accuracy regarding what we know and don’t know about severe cognitive and emotional distress, simply do not have (and hopefully would not want.) Where the institutional authorities in mental health attempt to make reality fit their desires, consumers and critically reflective practitioners merely want to have their lived experiences recognized as legitimate and their pleas to cease dishonest, misleading, provably false and/or widely speculative claim making in the name of “research” or “science.”

    Your story is a personal direct example of the chasm between those in positions of power within the field of “mental health” and those without that power. You had to be “screened” to ensure that you were sufficiently non-threatening to the favored truths of the “professionals.”

    I’m not calling for childish or hateful anger toward these powerful institutions. We can be civil, we can take a higher road, we can win through careful, cautious claim making that is honest about what with don’t know as well as what we know. But what we must not do, is act as though we must apologize for standing on the side of truth-seeking, validation of lived human experiences, and empowerment a liberation of human spirits. We must not allow others to make us feel that we must beg for permission to state that a liar is lying. We must not allow others to intimidate us into feeling apologetic for pointing out the absence of sufficient evidence to support the structures of psychiatry as it presents itself today. We must not accept the perverse suggestion that we should place our hat in our hands and meekly submit to the current rulers of mental health systems in the United States.

    We’re not here to have a neat discussion. We’re here for revolution.

    • AGREED … 100%!

      LIVED EXPERIENCE of the mental health system is inconvenient, doesn’t vibe with the DREAMWORLD mental health practitioners and many so-called “activists” (like Glenn Close and her BringChange2Mind crew) are trying so desperately to maintain.

      It’s time to start shouting it from the mountaintops: the emperor has no clothes! the emperor has no clothes!

      http://altmentalities.wordpress.com/2013/05/21/stigma-reality-dreamworld-clash/

    • Thanks P. H. for these words!

      I especially like the idea of authorities in mental health attempting “to make reality fit their desires,” because that’s such an accurate and useful way to understand a lot of the frustrating and downright oppressive experiences I’ve had with people in these roles. And, a fittingly ironic description of their actions because it’s often what these same authorities accuse US–as those diagnosed with psychiatric diagnoses–of doing when often it is so FAR from the reality of a given situation.

  18. I don’t agree that this kind of effort is pointless, because not everyone in “the system” is ill intended. Some are misinformed, and others are trying to help change things from within and will really appreciate the hard-hitting emotional proof that their “radical” views might actually lead to more effective outcomes. What I’m hearing is that these people were SURPRISED that the clients they served turned out to be human after all. Keeping them conscious of that fact is critical to the safety of those currently trapped in the system.

    That being said, I think it took tremendous courage to take that step, and I found their deceptive approach appalling and sickening. I hope you can have a meaningful followup discussion with them regarding the impact their “intervention” had on you and what it says about their need to maintain power over those they view as either beneath them or too dangerous to deal with in a genuine manner.

    I guess what I really took away from this is that these people were actually AFRAID of you and your colleagues and felt the need to use their power to protect themselves from the danger you presented. And that danger appears to simply be that you know the truth and are willing to say it. Why is that so scary to them? Get to the bottom of that and maybe you can get to some real change.

    Bottom line, Ted is right – it’s about the power structure, and until the power structure changes, this kind of intervention is just a band aid on a hemorrhage. But I still think it is tremendously valuable, both to the currently incarcerated victims who need some hope, and to those brave and lonely souls who are working inside the system to foment some kind of change.

    Thanks for a beautiful and moving piece, Sean. I hope they start listening to you. You have a wonderful healing energy that they all need to get in touch with!

    — Steve

    • Hey Steve,

      Thanks for for writing out these thoughts–especially the paragraph about these folks wielding their power because of their own FEARS of us. I do think to “get to the bottom of that” impulse is really part of the root of the hostility those in roles of mental health authorities often, unhelpfully, express towards those they claim to be “helping.” What ARE they so afraid of and WHY? The truth? The fact that their positions of authority, stability and salary are actually founded on unstable and violent myths?

      Possibly… ; )

  19. They not only didn’t treat you with basic honesty, it didn’t even flash in their pan to flinch about it. Did they ever ask you back to address a larger group, or were they just “screening” you because, well, that’s the only thing they know how to do? Thank you for your work and this article.

  20. The difference between being in-patient on regular hospital floor and in the psych ward are 1,0000 miles apart. Can you imagine your surg floor nurse coming in after say you had surgery and saying the crap the psych nurse does?? She’d get fired. Never could understand the authoritative attitude of the staff on a psychiatric ward. So confrontational and they know exactly what they are saying because it’s meant to upset and throw you off balance. My friend would came see me and ask why I was upset…the staff had just asked very unsettling questions and quickly left. She confronted the said staff and pointedly asked why they did it. No response. As usual they were busily writing copious notes about all the patients…they love to pretend they’re analysts.

    I found out psychiatry only had drugs to give and unsubstantiated diagnoses.

    I am celebrating 10 years being psychiatric drug free. It was a hard road haphazardly tapering but I did it. To me recovery is freedom.

    • Congrats aria on the decade of psych free living! And thank you for sharing that story. As a couple of us have started doing a recovery and information group at another hospital we found the first day that although we were told we would be undisturbed to talk open and honestly between us and the folks currently held on the floor that didn’t include people NOT coming in periodically to stare and scribble on clipboards. We’ve since talked with the head of the floor and said this was unacceptable if we to continue coming. He prevented this from happening the next time BUT reminded us that there was still a video camera in the room although it was audio-free.

      I have a lot of respect for his willingness to work with us even at the expense of standard hospital procedures and at the same time there is SO MUCH more to be changed about the situation! We can offer our selves and our stories to people in as transparent a way and by constantly referencing the limits in the present environment. This seems, to me, like the best way for us to be advocates in this situation. And, I’m only so glad there are some humans behind positions of authority in mental health that are willing to accept criticism, hear our words and learn.

  21. The difference between being in-patient on regular hospital floor and in the psych ward are 1,0000 miles apart. Can you imagine your surg floor nurse coming in after you had surgery and saying the crap the psych nurse does?? She’d get fired. Never could understand the authoritative attitude of the staff on a psychiatric ward. So confrontational and they know exactly what they are saying because it’s meant to upset and throw you off balance. My friend would came see me and ask why I was upset…the staff had just asked very unsettling questions and quickly left. She confronted the said staff and pointedly asked why they did it. No response. As usual they were busily writing copious notes about all the patients…they love to pretend they’re analysts.

    I found out psychiatry only had drugs to give and unsubstantiated diagnoses.

    I am celebrating 10 years being psychiatric drug free. It was a hard road haphazardly tapering but I did it. To me recovery is freedom.

  22. Sean,

    Just because several readers voiced an opposition to trying to work within the mental health system to make drastic and necessary changes, doesn’t negate the fact that many of us appreciated your honesty; willingness to have a dialogue; and openness toward healing, even reconciliation.

    I’m not certain that it can be done due to due to the power structure (lack thereof on our side), but I’m grateful there are young men such as yourself out there. It gives me hope for the future, including a better world for my two sons.

    My best,

    Duane

    • Sean,

      How about your group offering to design a short training program for personnel at the psychiatric hospital??

      Another idea I’ve often thought could bring about change: psychiatric hospitals (or some overseeing body) should send send out post-discharge evaluation forms to all patients, like other hospitals do. These should solicit opinions on the quality of food, room cleaning, nursing staff, attendants, etc just as other hospitals do. And also have space for write-in comments to recognize especially outstanding (good or bad) personnel.

      Mary S Newton, PhD
      Charleston SC 29412

      • Hey Mary,

        I appreciate your suggestions.

        I like the idea of proactively sending out a survey of a range of experiences in a psychiatric hospital instead of covertly having available a complaint process accessible for those who experience human rights violations. These complaints, when filed through a hospital or through DMH in MA, often go NOWHERE, however, because there are no clear channels of enforcement and accountability. In this vein, I have little faith for a survey process initiated and evaluated by the hospital itself.

        As per the training, I’ve talked with a lot of friends and comrades about a training to educate “professionals” about ideas of systemic oppression and to find ways of locating empathy in their roles and from their own life’s struggles and distress. But people would have to be willing to participate in this forum. I don’t think a training that doesn’t demand sincerity like this would be worth my time in the long term. I’ve seen many people in these roles evade sincerity and honesty so often, even in trainings that are supposed to engage with these things.

        Best,
        Sean

  23. Hey Sean, thanks so much for writing this…

    I think I am (seriously) going to print this out and read it every time I need to remember why exactly it is so hard, still, to speak with an even voice when someone is sitting across a desk and smiling and nodding at me, evaluating me even in my “recovery.”

    Reading this brought up a lot of feelings for me, some of which were really close to anger, thinking about a certain smug sort of smile that I have seen in particular meetings…but, I gotta tell you, your perspective and compassion towards people who may not even realize that they are being smug is probably the most heartening and simply wise thing I could have come across today.

    Thank you for talking about how you experience some of the challenges of intrasystem advocacy and thanks for being out there, doing what you do.

    Much respect…

    • Thanks Faith!

      Yes, yes, yes–the smug smile is something that makes me want to “act out” so much in these sorts of situations. It gives me the feeling that these folks are listening, “consuming” the experiences I am recounting and the words I am trying to use to pry them out of habits of thinking and doing and instead of actually hearing me are remaining self-satisfied and, in the words of another post-er, attempting to make my “reality fit their desires.” When I sense this I want to scream or lash out or something else that might be justified but very, very (haha) “discrediting.” : )

      One such response of fitting my words, in which I *try* to speak both for myself and for multitudes, to fit their desires is–instead of engaging with my story AS a surrogate for the stories of others they are failing or unable to hear and to open up to these folks and their experiences–to praise me for being so smart and “high-functioning.” As if I alone deserve an exceptional degree of respect for this insight and intelligence (which I’ll take advantage of when I can) when in fact I lay these words in front of them to be an advocate for others as much as myself. To begin to *label* me as exceptional, intelligent, and ughh even, “high-functioning” might seem like simple praise but ACTUALLY so often it’s a failure to engage with and to be accountable to what I’m actually saying!

      And that is maddening.

      Thanks again, Faith!

      • Hey Sean – I’ve not been around, but the other day I got a flurry of notification responses to this thread and really appreciate your wisdom and perspective about how to graciously handle that difficult awareness that, no matter how we measure or define or describe ourselves, some people persist in seeing us only in relation to our “history,” as they see it.

        “Recovery” can catch a person like that, keep them tethered to those moorings.

        Thanks again for sharing your work. I am consistently impressed with how wise most of the folks in the survivor community seem to be…I guess you learn a bit about life when you live with life and death long enough.

  24. I don’t think a training course to help the psychiatric staff to better understand the “mentally ill” is working or will work. They may not even be aware of the divide and how their attitude/perceptions are affecting their contacts with in-patients or outpatient clients. So many were burned out, plain rude and treated me like I was 4 years old. Lump all of us together under labels. Herd us from room to room from planned activity to planned activity.

    Basically I’m trying to say compassion’s limited for psych patients when they need it most. What you’re going through may not be understood but offering compassion (not disdain) can help.

  25. Nice piece Sean which I appreciated as a British loony because our movement has been one of bridge building and it’s hard work beating that path for the first time in a hostile environment. I remember starting a Patients Council in a hospital where a nurse aggressively shouted at the inpatients “you don’t want these people here do you?”, and attending some of the first service planning meetings where the suggestion of drug information leaflets were viewed as ‘subversive’, likewise speaking at conferences being effectively ‘stalked’ for the day by a psychiatrist telling me I was far too stupid to be able to read a research paper, interrupting every single sentence in a workshop. It was really hard keeping my cool, not taking the bait [they wanted us to lose it]. I refused to give them what they wanted, and cried over tea with a friend afterwards waiting for me at the station. Treading this ground within the system takes courage, and sometimes it hurts those of us who did this who can be viewed as irrelevant by others when they didn’t have to walk such a tough path because we helped lay some of the foundations for our peers after us.
    Earning respect the hard way is not for anyone to diss as survivor movements require people to do all kinds of actions – working from within the system, putting a foot in the door as an advocate which isn’t about persuading professionals to look at distress in other ways and offering a hand & hope to our peers, collaboration where that’s viable, separatist work, developing alternatives to psychiatry, survivor defined approaches, and not leaving behind anyone who doesn’t cut it as “recovered”.
    It’s not a case of only doing A or B, there’s room for everything to be done with people doing what suits them best.
    The reality is political systems will not allow psychiatry to just die overnight, and not all survivors will even handle not having a label, or need one for social supports, so those of us who can work with this will need to, can’t just ignore it, just as psychiatry doesn’t operate within a vacuum, it’s pointless addressing psychiatry without addressing many of the social and environmental problems which lead many people to psychiatry in the first place.
    Yes we do have to alter how we speak to professionals [rational, not visibly too emotional], because that can be very effective. I used to speak to medical students after they’d just had their psych placements, engage them in a shared humorous cultural topic and then sock it to them with my own deeply painful experiences speaking in a lowered calm steady voice looking right at them. It DOES have impact, when we convey what it’s like to be tortured, what those experiences meant to, the consequences of it followed by how simple it would be for them to respond differently to be helpful.
    Equally, we need to address how we can diss each other with notions of ‘recovery’ with its sticking points around who uses meds/services/takes welfare on a diagnosis/is employed.
    My early experiences taught me valuable lessons, so when I organised my first conference I did not allow participants to just attack someone because of what they believed them to represent because I knew how that felt, so everyone got to finish what they came to say, and then delegates could question and argue, on the basis of the content of what they said. I remember when two of us resigned from a high level committee because it was impossible on that occasion [sometimes we have to recognise when we are bashing our heads against a brick wall] but in resigning in the way we did we achieved much more than if we had remained.
    I agree with Sera about caricatures because a couple of people I mentored are professionals I’m proud to know, I was pushing on an open door anyhow, but their work makes life more bearable for anyone whose paths cross with them – and they pay a price for it. They’re not equal to survivors no, but equally not all survivors would automatically represent my position on a few topics neither. Hearing about ‘recovery’ did nothing for me, seeing others who had endured but survived for many years was a more helpful reflection for me as someone who cannot identify with ‘recovery/being in-recovery’. We should be concerned about the way ‘recovery’ has been utterly bastardised by psychiatry with their ‘recovery colleges’ and ‘champions’ and this is where survivors really are duped into taking paid roles which are like tinsel on the Christmas tree, now this is where I wish survivors would say ‘no thanks’, I understand why those jobs look better than shelf stacking, but they are being used to further the aims of service managers.

    • Wow, Joanna, you capture so much in these thoughts! So much that my comrade and I in the States struggle with a lot–and often struggle with what words to use to describe these impulses, reactions and responses.

      I really appreciate you sharing your experiences and your reflections on these. I imagine my quest in life and how I want to work with others is in supporting each other as truth seekers and warriors of empowerment. I see a lot of that reflecting in your words too. So often many of our, ahem, “peers” even forget that to attack each other from positions of polemics that discard one and many realities doesn’t bring us any closer to liberation than those who uncritically follow their roles of authority in psychiatry. This sort of “horizontal oppression,” as I’ve learned to call it, is sometimes more infuriating to me than even the oppression done from roles of authority in the mental health system to those pegged as patients, consumers or some other euphemism for the dispossessed– because these folks should KNOW better and yet so often it seems they do not.

      But, I suppose our quest may award them our patience too and a chance to know better.

      Thanks for your words!

      • I appreciate your words too Sean because we must have the difficult and uncomfortable conversations exploring the contradictions, respecting differences and different kinds of activism otherwise fighting for freedom becomes meaningless if it’s only the freedoms we agree with. There isn’t always a clear unambivalent line on issues. We live in a complex, contradictory, confusing world and in trying to look at those contradictions I can find myself attacked from all sides. When I raise one of the most fundamental contradictions regarding the issue of people needing to have their diagnosis used in order to live i.e. access state support [whilst simultaneously wanting to see the fall of DSM] many survivor leaders don’t want to look at it because it’s an embarrassment and doesn’t fit models of ‘recovery’, radical activism, freedom from psychiatry, but it’s a real life problem which isn’t easily resolved. In my country at the time of DSM/ICD/Care Clusters being questioned [rightfully so], the irony is that for some people the only thing standing between living and destitution because of several policies are mental health services. It’s the most horrible contradiction and the decent workers in the system understand this and are trying to help their service users as best they can, and it doesn’t help to attack those caught in this position.
        Sometimes working within the system makes the difference for some between surviving it or not, like advocacy.
        Like you I seek people’s own truths and wish to support however a person survives, even if I don’t like it. Horizontal oppression, that’s a really good term, we see that happening in the UK too, and sometimes it can reach cannibalistic proportions,and all that happens is that it divides us and creates great big gaps for our enemies to seize. I’ve seen survivors very hurt as you suggest in your words, sometimes even more than what services did to them, yes, we should know better.
        We each have to do whatever feels right and going into hospitals and battling it within doesn’t stop anyone from battling it outside in different ways, we can have a broad umbrella.

  27. “Then we might agree to approach each other with genuine curiosity and humanness, values through which the opportunity for growth and understanding can exist.”

    Thank you Sean. Reminds me of one of my favorite Rumi quotes,

    Out beyond ideas of wrongdoing and rightdoing,
    there is a field. I’ll meet you there.

    When the soul lies down in that grass,
    the world is too full to talk about.
    Ideas, language, even the phrase “each other” doesn’t make any sense.

    Thank you for approaching this divide with courage, vulnerability and, yes, curiosity. I think it is so easy to get stuck in chasm created by institutional “efficiency” that does not make much room for humanness in any gear in the cog.

    Easier to vilify or dehumanize each other, rather than trying to reach a hand across and invite the soul to emerge in a safe space where “each other” doesn’t make any sense… That is the space where healing can happen. But lord knows, it takes hard work and patience to create it in the gaps and cracks. And too many never find it.

    It can be all too easy to give up, when we start out disenfranchised and disempowered, but I am encouraged by those historic moments in which beautiful souls like Rosa Parks stand up in defense of humanity despite insurmountable odds.

    We never know when we are in such a moment. But we can certainly increase our odds by standing up more often.

    With much gratitude for your time traveling and bridge building and surviving,

    Jen

  28. What we are discussing is the reality that the psychiatric community has been given the legal right, by the US government, to take away the God given, and constitutional, rights of anyone they please. By defaming anyone, for any reason they please, with a “life long incurable mental illness,” which makes that person no longer a person with human rights. Psychiatry should not be given this right. They’re a bunch of egomaniacs deluded by big Pharma false advertising.