Friday, September 16, 2011

Searching for a Rose Garden in Berlin | By Dr. Tara Gregory

View of the valley below Neuschwanstein by Dr. Tara Gregory
I just returned from a trip to Germany and Austria where in addition to the usual sightseeing, I was privileged to attend a conference called “Searching for a Rose Garden: Fostering Real Alternatives to Psychiatry” in Berlin, sponsored by Verein zum Schutz vor Psychiatrischer Gewalt – the Association for Protection Against Psychiatric Violence. This conference was organized and primarily attended by persons who referred to themselves as survivors of psychiatry from all around Europe, Australia, and New Zealand. As far as I know there were only a few of us from the U.S. and maybe even fewer whose experience is more as a provider than a recipient or survivor of psychiatric services. Although I’m still processing everything I learned and experienced at this conference, one thing I do know is that the wisdom that was shared by persons with lived experience and from other countries changed my perspective on what psychologists or other service providers like myself think we know about mental illness. I’m just going to share a few questions, thoughts, and ideas that I’m still considering and maybe I’ll write more in the future when I’ve figured out what this all means to me. 

Before I share my questions/thoughts/ponderings, I want to be up front about the fact that I don’t have much personal, lived experience with mental health services beyond working in the substance abuse prevention field for many years and now as a researcher who sometimes focuses in this area. So I wouldn’t consider myself to be much of a consumer, survivor, peer or any other designation for someone with significant lived experience. I’m also a community psychologist – not clinical – and as such, I’ve never provided direct therapeutic services to persons with mental health issues. My role has primarily been to help foster community conditions that support the health and well-being of the people within these contexts and to do research along these lines. I’m not saying these things to distance myself from the people or the issue, but to be clear that I’m a bit of an outsider and may be late to the party where some of my thoughts are concerned. So I’m proceeding cautiously knowing that what I write here is tinged with a bit of distance from – but complete respect for – lived experience in this area.

Briefly, here’s what I heard, considered, thought, or questioned based on my experience at this really illuminating and inspiring conference:

  1. The perspective presented by many at the conference was that of psychiatric survivors, i.e. people who reject the medical model of distress and who feel that they have been seriously mistreated and harmed by typical psychiatric treatments (such as institutionalization, restraint, electroconvulsive therapy, medication) and are thus “survivors” of psychiatry. This perspective of being a survivor of services seems appreciably different than that of a “consumer,” the term that is more typically used here in the U.S. or at least in Kansas. What are the implications of being a survivor versus a consumer? 
  2. Consistent with the rejection of the medical model, several presenters indicated that the term “injury” rather than “illness” is more reflective of the foundation of mental health issues. One presenter, David Webb, suggested the word “psychache” (soul ache) as being the best descriptor of the condition that fuels such responses as suicide attempts. Additionally, in her presentation on self-harm, Clare Shaw spoke of self-injurious behaviors as an expression of the will to survive and hope while in distress rather than the typical view of them as indicators of hopelessness. She further noted that the greatest “penalty” and motivator for lethal actions was being restrained from self-injury, which takes away the person’s only option for comfort in the midst of turmoil. These ideas seem to fit well with the trauma-informed care perspective that suggests that what appears to be maladaptive behavior is actually a reasonable response in the context of traumatic situations/histories. So if there’s no true mental illness but rather mental injury or “psychache” what does that mean for how we typically view and treat mental health issues?
  3. In Berlin, there’s an organization, which helped support this conference, called the Weglaufhaus. Literally translated, this means “runaway house.” At the Weglaufhaus, peers provide support to those in crisis so as to lessen the possibility of traumatization through interaction with typical treatments or the system itself and to encourage solidarity and self-sufficiency. While there are a few similar organizations in the U.S. (see peer-run crisis alternatives for more information), what would it take to create more options for peer run alternatives to hospitalization? Maybe more importantly, what would it take to make this “alternative” more mainstream?
  4. Another field of inquiry that’s emerging in Germany is peer-supported medication cessation. Basically this would offer an option for those who make the decision to stop taking medication when it seems to not be helping or to be harmful (as defined by the person) to get assistance from others who understand the process and ramifications in all areas of the person’s life (e.g., physically, emotionally, spiritually, socially, etc.). The desire to create such a peer-driven service is becoming more pronounced as knowledge increases about the negative impact of psychiatric medications on health and life expectancy. While this may take a while to figure out how to implement effectively and consistently, will reliance on medication ever become the exception rather than the norm? Should it be the exception?  I’m guessing that most participants at this conference would probably say yes.
Probably the most central point that was underscored time and again during the conference was the power of solidarity and support among survivors. Although not completely parallel to living with a mental health issue, I’ve been a type 1 diabetic since I was six years old. Although my diabetes is under good control, I often get “assistance” from others in managing it – sometimes invited, sometimes not. I’ll usually gladly accept it from someone who has similar experiences or who has at least shown themselves to be knowledgeable and empathetic to the range of experiences I have. However, nothing irritates me more than when someone who hasn’t lived with this or who doesn’t have the same type of diabetes tells me what I should or shouldn’t eat, when I should check my blood sugar, how much to exercise or not (as some oddly recommend), and what my limitations are or might be. For those with mental health issues, who often face more traumatic intrusion than I probably ever will, peer support is quite understandably preferable and, as research is showing, can be highly effective. And, as Clare Shaw noted, understanding a person isn’t just the first step in helping, it IS the help.

So I came back with a lot of questions after this trip -- one is why my German sounds so good in my head but doesn’t appear to be well understood by most native speakers -- and a lot to ponder -- including how many times I could eat a meal of bratwursts and pretzels before someone tells me a diabetic “shouldn’t be eating that.”  More than anything, as I’m always reminded when I go to Germany, which is where I was born, there are often very different but equally valid perspectives and ways of living in cultures other than our own, whether it’s the German culture or that of survivors of psychiatry.  I’m very grateful to the conference organizers and participants for sharing their perspectives and experiences in an effort to increase understanding and the growth of a more enlightened approach to mental health.


  1. this is such a powerful account of the conference! thank you for having been with us here, tara and especially for the questions you are raising in your points from 1 to 4.
    a warm welcome to survivor culture

  2. Thank you too for this blog Tara, it was really good to meet and speak with you and it looks as though you had a good trip after the conference. I felt that your comments in relation to your experience of Type 1 diabetes rang very true and reflect the experience of a colleague of mine with both that experience and also the experience of mental distress. wishing you well. peter (peter Beresford)

  3. according to them, night-shift nurses have higher risk to develop type 2 diabetes, Study Says. Its really sad that this happens to those who cares for us when we are confined or brought to the hospital.