Pondering the future of Support Groups | By Jennifer Comes

One of CCSR's roles is to act as custodian of the state's self-help network, a database of self-help groups where people can find help for specific issues or just connect with other people who have the same medical, mental health, relationship, or other concerns. Finding a support group close to home can be a tremendous resource.

But people often ask us, what good is a database of support groups when a person can just go to a web site from the comfort of their home and find support online? Good question!

To us, the difference between face-to-face self-help and online self-help is like the difference between blowing a kiss and giving a kiss. While both are displays of affection, one is more real, more meaningful. That's how we feel about community support groups, and our research backs this up. Some emotions – anger, jealousy, anxiety, and depression, for example – are thought to be more easily expressed in a personal setting than online with a group of people one doesn't know.

But many organizations also keep databases that list online support groups; they, too, have something to offer. Online self-help groups can be a good option for individuals who find themselves too far from a community support group. Others who may want the help of a support group may not be able to relate well verbally to people – individuals with autism or social phobias, for example. Perhaps a physical handicap makes attending a support group meeting too difficult, or time constraints make attending a meeting impossible. Perhaps a situation is too unique to expect to find a support group locally. In those situations, online groups may be an appropriate option.

Research we've been conducting tells us that online self-help – e-mail, bulletin boards, and the like – can also supplement or reinforce the work of a real-world support group. Members of Alcoholics Anonymous, for example, can attend meetings face-to-face, but they also can participate in an online e-mail and bulletin board for AA members that reinforces and expands on what is offered in meetings, giving members a more enriching experience.  

We believe strongly that support groups empower individuals to help themselves, and we see a future for community self-help groups going forward. Our database of more than 2,000 support groups, national organizations and web sites can link people all over the state to support near and far. To find a support group, go to www.kansashealthsolution.org/selfhelpgroup or call us toll-free at 800-445-0116. If your group isn't in our database, please call to let us know you would like to be included.

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.

Listening as Ministry | By Seth Bate

Kansas Windfarm by Eye of the Storm Photography

I read Lael’s post on the heels of reading The Missional Leader, by Alan Roxburgh and Fred Romanuk, which views storytelling as a leadership skill. The authors propose--and I’m inclined to agree--that people must be able to articulate their own narrative but also the narrative of the community around them.

Listening to and then telling the story of the community may be the hard work, but it is critical. People and communities who cannot name the way their worlds are changing have less power with which to engage, understand or confront the change. The authors suggest that those who cannot name the deeper sources of their anxiety focus on the symbols of the change rather than what’s beneath those symbols. An example in the book is Christian parents who focus on getting Harry Potter books out of a school library when they are really worried about a much broader question: how “do we form a cohesive community of identity and belonging that shapes our children within the narrative of Christian life?” Deep attentiveness may be a way to draw out and shape these stories.

For Christians, there is also much to be learned from viewing our stories and the stories of our community through the story of Scripture. The Missional Leader makes this sound like the most natural thing in the world. After all, the Bible takes great pains to describe the ordinariness of the people chosen to God’s work.

I see this attentiveness modeled in the life of Jesus, who began with the lived experience of the people he encountered. He started where they were. As The Missional Leader puts it, “he enters those experiences weaving God’s story through their lived stories.”

After reading Lael’s post and this book, it seems to me that storytelling (and listening) may be an act of peer support. It may be an act of leadership. And it may be an act of ministry.

If you would like to explore the impact of missional leadership on your faith-based organization, join us for a free Compassion Kansas workshop  "The Missional Faith-Based Organization" on September 20, 2011. Call 316-978-3843 to register.

Personal Medicine, Empowering People | By Lael Ewy

When you hear the word “medicine,” you probably think of a bottle full of pills. This is the experience for most of us when we have a physical ailment, and it is often the experience when we have a psychiatric ailment as well. Whatever your views on the “medicalization” of psychiatric diagnoses, pills don’t treat the whole person. And since we’re all different, a whole person approach must be unique to the individual, a “personal” medicine. 

One promoter of personal medicine is Pat Deegan, a mental health consumer and psychologist, who developed a workshop of video presentations and workbook activities called Common Ground to help get mental health consumers in touch with their own personal medicine and to help them personalize their medication experience. 

Nancy Jensen, a Certified Peer Specialist and member of the CPS training team at the Center for Community Support and Research, is both a user of and tireless advocate for the Common Ground curriculum. Nancy came across Common Ground after joining CCSR. “I found myself not wanting to go back to where I was before,” she says, but initially dismissed Common Ground as “just another workbook.” What she discovered was a program for empowering mental health consumers. 

Nancy had been an “aggressive” consumer, one who insisted the provider “had to do it my way.” She says an empowered consumer, on the other hand, allows the provider to have expertise but not to take away the consumer’s control over her own life and medication. Common Ground, Nancy explains, puts forward that there are two experts in the room: the provider and the consumer. 

Key to this is the “power statement,” a statement the consumer uses to express to her provider what she wants out of treatment, what parts of her life she won’t let treatment interfere with. The power statement is formed around personal medicine: the things in life that make one feel good, and feel good about life. For Nancy at that time, that was working and taking care of her cat.      

Another important part of Common Ground that Nancy finds powerful is the idea that emotions are not symptoms. Often, those with psychiatric diagnoses (and sometimes their doctors and loved ones) are so used to seeing what they feel as aspects of illness that they lose sight of the fact that emotions are a natural part of life, genuine reactions to one’s life and the direction it’s going. 

These tools not only help people recover, they help people avoid  the “medication trap,” where the side effects of a medication keep one from pursuing personal medicine, but the lack of medication exacerbates symptoms, also preventing one from pursuing personal medicine. Common Ground advocates "trade-offs” between personal and pill medicine, and the use of power statements to help providers understand the need to help people do those things that make their lives worthwhile. 

Nancy points out that not just pill medication can lead one into the medication trap; therapy can too. She also stresses that the ideas of personal medicine and power statements can be useful for anybody, not just those with psychiatric diagnoses. 

Connecting with SAMHSA online | By Amy Delamaide

CCSR Peer Educator Christine Young recently received an e-newsletter from the Substance Abuse and Mental Health Services Administration (SAMHSA), which is the national government's behavioral health administration, that promoted its online outreach work.

Increasing Outreach, Feedback, and Virtual Communities

Facebook. YouTube. Twitter. Blogs. In response to President Obama's request for Open Government, SAMHSA has developed a robust “digital engagement” program with established presences on four major social media channels. At the center of it all, SAMHSA's blog serves as the hub for these behavioral-health-focused efforts and expands SAMHSA's connections across the Nation.

Christine notes, "This opens access to so many more people. There need to be responsible concerns about security and having personal information out there, but I think services that are being provided need to evolve with the times."

Lael Ewy adds, "As a way of hitting people where they are, SAMHSA is doing the right thing. The interactive blog is a great idea as well: open government becomes responsive government in that case, and that’s really what we want it to be, especially when the issues and policies are complex."

CCSR looks forward to following and liking SAMHSA.

To connect with SAMHSA, check out their social media page.

Spirituality in Recovery | By Dee Hinton-Turner

Spirituality in Recovery is a thought or vision I received many years ago, and still use today.  I had no idea that I would now be taking on the awesome task of putting Spirituality to pen, paper, and/or computer to teach and share with many others as a Certified Peer Specialist (CPS)/Peer Educator here at WSU Center for Community Support & Research.

Picture courtesy of Sasha Wolff

 A CPS/Peer Educator is someone who has a desire, mission and purpose to help others through many of life’s experiences towards recovery by sharing, showing and teaching.  I’m one of 4 who are on staff at CCSR.  We all have different experiences that we bring to our work.

For me, this journey has been enlightening, challenging and awesome all at the same time.  I have found a wealth of information via the internet websites, i.e., colleges, organizations, professors, doctors and other individuals who simply had a thought or opinion and shared with the world.  An example is David Lukoff, PhD, a founder and instructor offering an online continuing education course and quiz about Spirituality & Recovery from Mental Disorder on the Spiritual Competency Resource Center website.

Hopefully, with what I have learned and put to paper will “help somebody”--my life’s purpose.  Glory!

"If I Can Help Somebody" | Introducing Dee Hinton-Turner

“Glory!” is one of the first words you’re likely to hear Dorthene “Dee” Hinton-Turner say. It’s not just an expression but a way Dee sees the world. Dee is inspired with a sense of mission and purpose. It’s this that drives her to help others, first as a Certified Peer Specialist, and now as a Peer Educator training CPSs at CCSR.

But Dee’s desire to help is not new; it goes back to her childhood, to singing Mahalia Jackson’s classic “If I Can Help Somebody” in church:  

If I can help somebody
As I travel along
If I can help somebody
With a word or song
If I can help somebody
From doing wrong
My living shall not be in vain.

Dee was not sure what shape that help would take until she began a relationship with Southwest Boulevard Family Healthcare in Kansas City, Kansas. Here, Dee discovered the power of peer support in her own life, and knew that, as she says “This is it!” The spirit had led her on a path to become a CPS and help others as she had been helped.

Dee set her professional sights on two targets, Rainbow Mental Health Center or KU Medical Center in Kansas City, persisting in her attempts to land a job as a CPS at these organizations. When she finally got in at Rainbow, “Oh my goodness!” she found the healing power of helping others works both ways: “Being a CPS is personal medicine for me,” according to Dee. “There wasn’t a lot of leadership or instruction” at Rainbow, she notes, so Dee could use her peers’ own needs to help empower them. This in turn helped foster in Dee a sense of her own independence and personal power. At the end of a day at Rainbow, Dee was “thoroughly exhausted,” but felt rewarded and fulfilled.

In the words of “If I Can Help Somebody,” 

My living shall not be in vain
My living shall not be in vain
If I can help somebody
While I'm singing this song
My living shall not be in vain.

Dee’s experiences as a CPS were not in vain. Some days, she went into work “uncertain if a discussion topic [she selected] would work,” but when it did, the negative self-talk common to psychiatric diagnosis dissolved, uplifting both the peer seeking services and peer support worker alike. In small, profound ways, her work was made up of many acts of faith.

That faith’s solid foundation and the role of spirituality in her life make Dee think of herself as “The Spiritual CPS,” and her goals as a Peer Educator include exploring the relationship between spirituality and recovery from psychiatric diagnosis. “My being at WSU is not by chance,” she says, but an opportunity to learn and develop even more helping skills, part of her vision to “strike out and know more.”

And in that there is the glory of empowering others to live lives that are not in vain.    

For more about becoming a Certified Peer Specialist, visit trainingteams.org. 

The Everyday Transformation of Recovery | By Lael Ewy

In Back Of The Real
railroad yard in San Jose
     I wandered desolate
in front of a tank factory
     and sat on a bench
near the switchman's shack.

A flower lay on the hay on
     the asphalt highway
--the dread hay flower
     I thought--It had a
brittle black stem and
     corolla of yellowish dirty
spikes like Jesus' inchlong
     crown, and a soiled
dry center cotton tuft
     like a used shaving brush
that's been lying under
     the garage for a year.

Yellow, yellow flower, and
     flower of industry,
tough spiky ugly flower,
     flower nonetheless,
with the form of the great yellow
     Rose in your brain!
This is the flower of the World.

--Allen Ginsberg

What has me thinking about this poem right now is the delight and terror, the cosmic meaning Ginsberg finds in a homely, even horrid, little object: a foreboding, ugly flower in a forgotten scrap of land, a flower that just about nobody else but the desolate wanderer speaking the lines would happen to find. This poem exemplifies one of the most powerful and compelling traits of creative work: finding deep meaning in the mundane. Art is at its best when it’s heavily laced with the everyday.

This is both an artistic standpoint for me and a coping mechanism. In recovering from a major depressive episode nearly 20 years ago, I found myself drawn to those small moments and images that tied me to the world: a tree blazing orange on a crisp, fall day; the bruised gray-blue of a Kansas thundercloud; the pitch and roll of my old Mustang when she cleared a curve, the V8 pushing me back as we sped away.

If we get entirely too caught up in purity and perfection, we set ourselves up for continual disappointment and eternal frustration. The more “pure” a poem is, the more it trends toward a glossy sort of dullness. We know that Anne-Sophie Mutter has suffered as we have by the rough edge she puts on an otherwise sweet Brahms violin concerto.

An oyster without an irritant will yield no pearl. 

Unless we are able to abide with the small, inglorious steps we need to take to reach our goals, we’re unlikely to even begin, whether that goal is finishing the great American novel or merely getting out of bed in the morning. At my lowest, I made my goal taking a walk every day, rain or shine, snow or ripping prairie wind. Walking, I found gnarled hedge-apple trees and the scent of their decaying fruit. I found the tickle of the night’s cobwebs as their spiders ambitiously blocked my path. I found in the sandpiper’s cry the courage to keep on going.

The power of peer support is to have another who is there with you and has been where you are, reminding you that this glorious, ugly moment leads to another and another, and in those, too, there will be flowers, tough and spiky, resilient and industrious—and ready to be rediscovered in the moment after. I found a supportive peer in Ginsberg. Now, I’m helping others be supporting peers in the flesh.

And recovery, then, is an art, one that takes place moment-to-moment—an art that looks a lot like life.   

Photo courtesy of  Francesco Pappalardo