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.

CCSR Welcomes New Volunteers | By Angela Gaughan

We are excited to have seven students volunteering at CCSR on a variety of projects this semester.

Four students are from the Emory Lindquist Honors Program, two are in the Master of Social Work Program and one has earned a bachelor’s degree in Psychology. Each volunteer is working on a specific project – one that she expressed interest in. Our hope is that the volunteers will learn more about how we build capacity for individuals, organizations and communities. We are also looking forward to seeing what they contribute as well as hearing the questions they have about our work.

The students from the Honors program are Victoria Eck, a junior majoring in Pre-law and Political Science/History; Emily Lancaster, a sophomore majoring in pre-medicine; Janet Nghiem Phy, a freshman with an undeclared major; and Shahla Pourkaram, a junior majoring in Aerospace and Mechanical Engineering and Pre-medicine.

Kaitlin Boger is a second year master’s student and Jennifer Comes is in her first year of studying in the Master of Social Work Program. Bailey Blair has earned a bachelor’s degree in Psychology and a Teacher’s License in English Literature and Psychology. She plans to pursue a PhD in Clinical Psychology.

When I asked a couple of students what they were working on today, one said that she is gathering information for an upcoming presentation at a health fair. She is also creating a logo and handouts to help people with mental illness keep track of their medical information so they can advocate for their own medical treatment. Another student said that she is researching sources of resilience to help in building a model of trauma healing for CCSR’s work on Trauma-Informed Care.

Graduate student Kaitlin added, “Right now, I'm currently working on a Trauma-Informed Care blog post, helping design and facilitate leadership development sessions, and designing and supporting a trauma-informed organizational process for a community partner in Topeka. I have been conducting website searches to gather information on Trauma-Informed Care models and Trauma-Informed treatment. I have also been working on various teams to help design presentations in trauma-informed care.”

It has been great to get to know these students, the next generation of leaders in the work place. Please help us welcome these new volunteers!

Through the Eyes of a Professional | By Dr. Joyce Webb

Photo courtesy of Grzegorz Lobinski

Despite years as a psychologist treating people with many different kinds of problems, until my divorce many years ago, I had never really given much credence to the idea of referring my clients to self-help groups for assistance. My knowledge of self-help groups was limited, and possibly tainted by the movie stereotype of smoky meeting rooms filled with addicts who didn’t really want help. Little did I know then, how incredibly ignorant I was of the power and healing nature of these groups. Nor did I know that years later, I would be in need of one myself.

During a time of pain, when I was trying to manage an unwanted separation and impending divorce, I heard about a program at my church whose sole purpose was to speak to the hearts of those like me who needed healing and help with forgiveness. I, somewhat hesitantly, showed up in a church classroom over and over for about 3 months where my small group met and talked and cried and grew. It was better than any experience I could have had in therapy. These people ‘got it.’ They were patient, they talked to me about their experiences of growth, and they helped guide my processing. They truly understood what I was going through. They challenged my soured and burned perspective, and led me from a great heaviness in my life to a journey toward a new life of freedom. Suddenly I could live again and move on.

That experience opened my eyes. Soon I began hearing of other small groups in my church, in the community, and across the state where people embarked on other journeys toward greater understanding and healing from cancer, addictions, eating disorders, and grief. I was amazed that this world had existed for so many years, and my eyes hadn’t been opened previously. Years later, I was approached as a professional to help a faith-based leadership team launch and nurture a large community-based self-help group centered on recovery. I can’t express how heart-warming it was to watch people struggle with and conquer issues that had plagued them for years. I can only hope that other professionals, like myself, will open their eyes to the vast resources that can be found in self-help groups and step up to help build and expand these healing efforts in our communities.

As one person, I can’t meet every need of every client. Neither can any other professional. Self-help groups can be a great tool for many people seeking help and professionals who believe in them can assist in their success. Access to these groups and many other useful resources can obtained through the Self-Help group online database at www.kansashealthsolution.org/selfhelpgroups. This website is easy for clients (and professionals!) to navigate and can be searched by type of group or area of Kansas. For assistance, call 1-800-445-0116.

Free workshop will help faith-based organizations manage change

The popular Compassion Kansas workshop series returns this month with a new session designed specifically for faith-based organizations.

“The Missional Faith-Based Organization” will be presented from 1 to 5 p.m. Sept. 20 by the Wichita State University Center for Community Support & Research (CCSR). There is no charge for the workshop, but reservations are required and space is limited.

This workshop applies lessons from The Missional Leader, a widely used book about the missional movement in American churches, to faith-based community work and outreach. It is intended to help people who are serving their communities better understand and respond to the changes in those communities – not to mention the changes that may be underway in their own organizations.

CCSR staff members Teresa Strausz and Seth Bate will be the workshop presenters. Both speakers have worked with a variety of community and nonprofit organizations around the state. Strausz is a licensed master social worker and the facilitator of CCSR’s trauma-informed care team. Bate has recently been working with congregations as part of the Leadership and Faith: Transforming Communities project, and this summer he was on a guest faculty team at St. Paul School of Theology, Kansas City.

According to Strausz, part of the session will examine the relationship among faith-based service organizations, congregations and denominations. The workshop will also challenge attendees to consider the impact of spiritual practices that support the work of their organizations.

Bate said that CCSR has a long history of assisting faith-based organizations, but the focus of this workshop still makes it distinct.

“We’re excited to offer something specifically targeted to the situations of people engaged in community ministry through nonprofit and grassroots organizations,” Bate said. “We have some ideas we want to share, and we think we have a lot to learn from the people out there who are committed to this work.”

Call  316.978.3843 or (in Kansas) 800.445.0116 with questions or to make reservations.

Future free Compassion Kansas workshops are set for Oct. 8 and Nov. 9 (PDF flier).

From Suffering to Strength: Mental Health Recovery and Wellness at Work

by Lael Ewy

Courtesy National Archives

Statistics vary, but the prevalence of mental illness in America typically falls within a range of 17 to 25%. If government stats are even close, that’s about the same as the prevalence of heart disease, America’s #1 killer, and twice that of breast cancer. 

With this kind of demographic saturation you would think that we’d stop considering mental illness as something that afflicts “them” and start thinking of it as something that afflicts “us.” We all suffer from emotional stress from time-to-time, and many of us can relate to extreme states of mind brought on by the vagaries of early 21^st Century American life. 

But how many of us would be so bold as to place a psychiatric diagnosis on a résumé? Peer support workers in mental health are asked to do just that, but for good reason: having gone through mental health difficulties and recovered, peer support workers have deep, lived experience. With this experience, these workers help mental health care recipients identify and employ strengths to deal with difficulties and triggers, self-advocate with care providers, and find and pursue lives of their own choosing. 

The positive qualities of mental health recovery have recently gotten some good press in a story by Boston’s WBUR, but they hold deep lessons for other work situations as well, from dealing with the stress of overwork to the trauma of corporate reorganization. 

Still, there is stigma: we are a long way from the time when most people will feel comfortable putting their psychiatric histories on their CVs. 

However, workers who have recovered from emotional difficulties and extreme mental states can be exemplars of resilience, positive role models to others in the workplace who might find themselves at the cusp of similar circumstances. Above all, those who have recovered their mental wellbeing are reminders of the “us-ness” of these all too common difficulties, and of the hope-inducing fact that those difficulties can be overcome.         

How do we make a collective impact? | By Amy Delamaide

For our staff meeting next week, CCSR personnel are reading an article from the Stanford Social Innovation Review by John Kania and Mark Kramer on “Collective Impact” (PDF, Stanford Social Innovation Review, Winter 2011). We hope to have a productive discussion about what it means related to our philosophy and strategies for our work with organizations and coalitions.

Kania and Kramer define collective impact as “the commitment of a group of important actors from different sectors to a common agenda for solving a specific social problem” (p. 36). These actors include funders, government officials, representatives from key agencies, individuals, and others. While the regular gathering of such a mix of people could be referred to as a coalition or collaboration, collective impact initiatives go beyond this by including “a centralized infrastructure, a dedicated staff, and a structured process that leads to a common agenda, shared measurement, continuous communication, and mutually reinforcing activities among all participants” (p. 38). What the authors argue is that, for some issues--including what the Kansas Leadership Center refers to as deep, daunting challenges--it’s not enough for one nonprofit organization to try to intervene for the better. Some issues require the engagement of nonprofits, governments, businesses, and the public to create real and lasting change.

Five-level social ecological model

Scott Wituk, our Director, often refers to the social ecological model, where four embedded circles indicate the scope of potential intervention from the individual in the center to the relationship to the community to the society at large. This comes out of the Centers for Disease Control’s work to prevent intimate partner violence, which is work Scott has partnered with the CDC on.
When CCSR considers this model, we see that our work in leadership development and certified peer counselor training impacts individuals. Our work with organizations affects the institutional level of the five circle version of the model. Often when we work with coalitions or collaborative efforts we engage with many different agencies within a sector, hoping to impact society at large.

What Kania and Kramer suggest is that there is a role for an organization—perhaps one like ours? or like yours?—to become a “Backbone Support Organization.” This would be an organization that consists of at least a project manager, data manager, and a facilitator. The people in these roles manage the overall change effort.

Some questions related to this article for CCSR--and your organization!--to consider:

• What is our past experience? Have any of the big projects we’ve been a part of met the key features of a collective impact initiative?
• What are the issue areas we want to see progress on? For which issues are we willing to be significantly involved in managing a collective impact initiative?
• How could we increase our impact at the society level of the social ecological model?

Has your organization discussed these questions? What conclusions did you come to? Let us know in the comments below.

Our organization plans to discuss this article more next week. Look for a follow up blog post with some details on our conversation.

What makes a good Executive Director? | By Amy Delamaide

In the summer of 2002, I got the opportunity to volunteer full-time with two Wichita nonprofit organizations.  One of those organizations was the Lord’s Diner. I served at the Lord’s Diner 3-4 evenings a week that summer and got to know Wendy Glick, who was the Volunteer Coordinator at the time. Wendy went on to become the Executive Director. I stopped volunteering my time but continued supporting the organization as a (very small) donor.

The Wichita Eagle reported last week that Wendy is stepping down as Executive Director of the Lord’s Diner in mid-July.

My experience of working with Wendy and the announcement of her impending departure made me reflect on what I learned from Wendy’s example as an Executive Director. 

Sticky note with a message on it from Wendy that I keep on my bulletin board.

Keep in touch. When I stopped volunteering, Wendy kept in touch with me. I was on the Lord’s Diner mailing list and got their regular newsletter and donation appeals. About once or twice a year, I made a small contribution to the Lord’s Diner. I would get a letter in the mail thanking me for my donation and stating the amount for my tax records. Often, these letters had a quick “Hello, Amy!” from Wendy hand-written on the letter. Now, the Lord’s Diner probably sends out hundreds of thank you letters. But Wendy took the time to say hello to someone who gave just a little. And that meant a lot to me. It has been what keeps me connected to the organization and interested in its welfare—and, importantly, it has kept me contributing financially.

Know your mission. I love the way Wendy and the Lord’s Diner board members communicate the mission of the Lord’s Diner, even in a Wichita Eagle article announcing Wendy’s departure. “‘This is as pure of a mission statement you can have: Feed the hungry, no questions asked,’” said Pete Meitzner, the board chairperson. This is an organization that knows its purpose and speaks to it regularly.

Stick to your mission. I remember a decision Wendy made in late 2002 or early 2003. It was winter, and the Lord’s Diner had been donated some hats and scarves to distribute to those who needed them. The donation was appreciated, but it also caused some difficulty. The Lord’s Diner did not have a system in place for distributing hats and scarves. Its purpose is to serve meals. It has systems and procedures set up to optimize the serving of food. In fact, distributing clothing would distract its small staff and its many volunteers from their purpose of nourishing people with food. So Wendy made the tough decision not to accept donations of clothing to distribute, trusting that there were organizations in place to receive and distribute such items. She helped the organization stick to its mission.

Wherever life takes Wendy next, I wish her the best. And I wish the best for the Lord’s Diner as it transitions from Wendy to an interim director to a new Executive Director. May their next director be as people-oriented and mission-driven as Wendy.