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.
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