Nothing About Us Without Us!


As we prepared for our regular monthly Board meeting, a casually dressed middle-aged man entered the room.  I didn’t recognize him.  I was struck by the shirt he was wearing, it was hard not to be.  Imagine bright red flames across the front of the shirt with the words, “Advocate from Hell” emblazoned above.  Wow, I thought, this is going to be a fun meeting!

I’ve written about getting off to a good start if you’re considering making radical changes in your local mental health system of care.  I’ve discussed the importance of a solid foundation of likeminded individuals, the need for a common set of beliefs, assumptions and goals.  Another critical element for our efforts in Ashland has been the emphasis on listening to those people most directly affected by the current system of care, i.e., “clients.”  There’s no better group of people to tell you what needs changing than those currently interacting with that system.

Which leads me back to that gentleman with the “hellish” shirt.  After the meeting was over Pat introduced himself as an advocate, a consumer/survivor from Ashland recently returned from out of State.  Pat wanted to be involved with what we were doing and the subsequent years have shown the wisdom of welcoming him.

Designing mechanisms to gather input from persons who have had past or present experience with your respective mental health system is a key step in bringing about reform efforts.  We’ve used opened ended surveys, interviews and focus groups to try and gather this information.  We’ve been fortunate to have outspoken individuals who want to share their experiences, but more importantly, their ideas for what changes need to occur to make the system “work” for those it is intended to help.  Finally, we’ve worked with our local peer or “consumer operated agency” as it’s defined in Ohio for their thoughts and ideas.  In one way or another this is what they told us:

• We want to be treated with dignity and respect;

• We want to be given accurate and complete information about what “professionals” think about our situation and what solutions they think could be helpful;

• We want these “professionals” to listen to our  own ideas of what we think is helpful/useful;

• We want ALL staff of the agency to be welcoming and pleasant, to create an atmosphere of safety and where healing can take place;

• We would like a say in who is “assigned” as our case manager or counselor, etc.; and

• We would like to be able to receive services as quickly as possible

Hardly extreme or unreasonable requests.  We were most surprised by the requests that were not being made.  No one mentioned they wanted more honesty by professionals when discussing the causes of mental illness or the course of the diagnosis.  No one really questioned the diagnostic system being used to label them.  Some concerns were expressed about medications but primarily those concerns were that they couldn’t get the medications they wanted or couldn’t get them quick enough.

What if the chemical imbalance myth, the need for medications to bring “balance” and life-long course narratives had taken such hold that the majority of service users weren’t questioning them?  What kind of “damage” might we do if we started to present alternative narratives wildly different to those believed to be true?  This discussion led our Board to support a yearly Recovery Conference called the Respect, Success, Value and Purpose (RSVP) conference.  The primary purpose is to invite “consumers” of mental health services both present and past to hear alternative views of mental illness and treatment.  September 2012 will mark the fifth annual conference.  We’re expecting over 300 attendees from many counties in the State.  While the primary invites are for consumers, a fair number of mental health professionals and other community partners are encouraged to attend.  The conference is thought to be a productive vehicle to change narratives many consumers have based on years of misinformation from professional helpers.

When you are going about planning for reform efforts in your own area, we encourage you not to overlook the opinions, experiences and ideas of those closest to the area under reform.  Don’t assume you know what their feedback will be and once you have it, evaluate carefully what your next steps will be.

-Next Time:  Taking the ‘President’s New Freedom Commission on Mental Health’ seriously 


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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  1. Very interesting observations. Right, how would people who have been lied to know they’ve been lied to?

    If they’ve been told they cannot survive without medication with every step approved by a doctor, how can they be empowered to work on their own treatment plan?

    They need to hear another point of view. Thanks, David. I look forward to hearing more developments in the recovery movement.

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  2. Great piece David.

    Makes one contemplate whether real knowing is in experience, and not education.

    Have we idealized the value of our education system to much, in our unconscious need for rank & status protection?

    The sainted assumption that Doctor “knows” best, when Doctors are only human.

    Of coarse when we’ve been so hurt by them, “pain,” creates the cerebral “tone” of rationalization, until we find a way to let it go. Consider;

    “Working at Columbia University in the 1940s and 50s, Nina Bull conducted remarkable research in the experiential tradition of William James. In her studies subjects were induced into a light hypnotic trance, and various emotions were suggested in this state. These included disgust, fear, anger, depression, joy and triumph. Bull discovered that the emotion of anger involves a fundamental split. There was, on the one hand, a primary compulsion to attack, as observed in tensing of the back, arms and fists (as if preparing to hit). However, there was also a strong secondary component of tensing the jaw, forearm and hand. This was self-reported by the subjects, and observed by the experimenters, as a way of controlling and inhibiting the primary impulse to strike.

    In addition, these experimenters explored the bodily aspects of sadness and depression. Depression was characterized, in the subjects consciousness, as a chronically interrupted drive. It was as though there was something they wanted but were unable to attain. These states of depression were frequently associated with a sense of “tired heaviness,” dizziness, headache and an inability to think clearly. The researchers observed a weakened impulse to cry (as though it were stifled), along with a collapsed posture, conveying defeat and apparent lethargy.

    When Bull studied the patterns of elation, triumph and joy, she observed that these positive affects, did not have an inhibitory component; they were experienced as pure action. Subjects feeling joy reported an expanded sensation in their chests, which they experienced as buoyant, and which was associated with free deep breathing. The observation of postural changes included a lifting of the head and an extension of the spine. These closely meshed behaviors and sensations facilitated the freer breathing.

    Understanding the contradictory basis of the negative emotions, and their structural contrast to the positive ones, is revealing in the quest for wholeness. All the negative emotions studied were comprised of two “conflicting impulses,” one propelling action and the other inhibiting (thwarting) that action.

    In addition, when a subject was “locked” into joy by hypnotic suggestion, a contrasting mood (eg, depression, anger or sadness) could not be produced unless the joy “posture” was first released. The opposite was also true; when sadness or depression was suggested, it was not possible to feel joy unless that postural set was fist changed.” Exerts from “In an Unspoken Voice” by Peter Levine PhD.

    Is it the “motor act” which comes 1st, or the rational awareness of the mind?

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  3. At the state hospital where I work I sit on the Patient Grievance Committee. As a peer I keep pointing out that if we don’t understand why patients on the units don’t go to groups or want to comply with the wonderful treatments the only way we can find the answers to the our questions is not to sit and assume we know what’s going on, but to go to the source and get it from the horses’ mouths. You’d think I’d brought up the most revolutionary idea in the world when I state the need to ask patients why they do or don’t do things. It’s not rocket science but the assumption on the part of so many staff is that the patients aren’t capable of telling them anything useful. It’s disgusting, disrespectful, and demeaning to the patients, and to me as a peer. However, we may be making progress. The woman responsible for investigating complaints and grievances stated at the last meeting that we are so far off the mark of accomplishing what needs to be done, and we will continue to be so, until we have patients sitting as members of the committee! The rest of the members froze in their seats with these strange looks on their faces!

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    • You’re spot on Stephen. Not going to the sources reflects an unhelpful arrogance. What’s worse is asking people for their input, pretend to listen but disregard their feedback. I’ve seem many professionals “go through the motions” of soliciting consumer/peer feedback. Fewer actually put what they were told into action or used the feedback to change/reshape a system or service.

      Appreciate your thoughts.

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