What is especially frustrating to me is hearing from people who are unsatisfied with their current local service lineup and have a workable idea for a valuable service (let’s say peer-delivered respite care) — but refuse to collaborate with the medical community and with insurance systems to find ways to implement and sustain their own work. I am someone who recovered after treatment (including medication) in the mainstream mental health system. I support clinicians and care advocates who do the work every day, deliver good results for the people in their care, and respond to the concerns of their patients. But it is also true that in many settings care is sub-par by any standard. When the “recovery community” knows how to fix the system’s flaws, what is the next step? If you consider yourself an advocate or a reformer, what can you do that is practical and positive? We are missing opportunities to deliver person-to-person help in our society. We hear a lot of lip service about family members and friends supporting and giving comfort to people in crisis, helping to watch out for suicide risk, delivering friendship to combat loneliness. Who will step up and build a way to train up friends and neighbors to deliver informed kindness on demand? This is America, we live in Capitalism World. Success for an idea usually involves some measure of commercial sustainability. There is economic value around mental health reform. Who has an idea worth funding, and the willingness to make that idea palatable –or actually desirable — to doctors, insurance companies, and the other big political, social, and economic entities that distribute ideas and programs throughout our society? That’s what effective and meaningful reform looks like to me.
What is especially frustrating to me is hearing from people who are unsatisfied with their current local service lineup and have a workable idea for a valuable service (let’s say peer-delivered respite care) — but refuse to collaborate with the medical community and with insurance systems to find ways to implement and sustain their own work.
I am someone who recovered after treatment (including medication) in the mainstream mental health system. I support clinicians and care advocates who do the work every day, deliver good results for the people in their care, and respond to the concerns of their patients. But it is also true that in many settings care is sub-par by any standard. When the “recovery community” knows how to fix the system’s flaws, what is the next step? If you consider yourself an advocate or a reformer, what can you do that is practical and positive?
We are missing opportunities to deliver person-to-person help in our society. We hear a lot of lip service about family members and friends supporting and giving comfort to people in crisis, helping to watch out for suicide risk, delivering friendship to combat loneliness. Who will step up and build a way to train up friends and neighbors to deliver informed kindness on demand?
This is America, we live in Capitalism World. Success for an idea usually involves some measure of commercial sustainability. There is economic value around mental health reform. Who has an idea worth funding, and the willingness to make that idea palatable –or actually desirable — to doctors, insurance companies, and the other big political, social, and economic entities that distribute ideas and programs throughout our society? That’s what effective and meaningful reform looks like to me.
Mapping stress effects to ZIP codes is interesting as an academic exercise, but the practical question is what to do about it.
What we should emphasize, the problem of trauma or the solution? Put me on the side of emphasizing what to do. No matter what one’s dose of trauma, the way out involves finding safety, reckoning with what happened, and rejoining the larger community. My question for those do-gooders with their data about trouble across ZIP codes is how do they propose to help people find safety? It’s important to ask what does this group of people in this place want to do to reduce its exposure to racism, poverty, hunger, and violence.
Of course, we have a catalog of approaches that are helpful. Resilience building starts in infancy, with strong parental attachment — so the first layer of prevention is helping parents do better. The second is to prevent bad things happening around kids as they grow up.
For what helps kids anywhere, a good approach for youth success is from Search Institute — their 40 Developmental Assets approach shows how access to role models, opportunities to learn, and building a sense of self-efficacy helps kids succeed.
The best research I’ve read lately about kids growing up in highly stressed environments is “Coming of Age in the Other America,” published this year, about kids growing up in Baltimore. The authors discovered that kids growing up in tough circumstances tend to do best when they have an “identity project” — a way of building a future they can visualize and work towards, especially if that is supported in some way by a comminuty, institution, or other person. In other words, a role model and sufficient resources to help the kid deal with the inevitable challenges.
Corinna’s program Poetry for Personal Power is a good example of how to help kids come to terms with the challenges they have dealt with in their lives. Without stigmatizing or retraumatizing anyone, her participants tell others how they became heroes.
I think the most important thing in this case is not the medication, but the fact that conduct like exposing himself and threatening others was happening while manic and refusing medication and being supported by family. This sort of conduct is not some hypothetical issue or preference, it is not tolerable, and finding a way to control it is a practical necessity. And so we are left with the hard question of what friends, family, and more benign approaches can actually do, or have been able to actually do to help. I’m all for benign functional alternatives to involuntary confinement, and believe they can be funded and deployed.
My view of recovery connects with human development. Human development is complex and multifaceted. Everyone turns out different. But there is a typical agenda, and even though there is a range of capacities, people move through life in stages. In young adulthood people are taking on certain types of social roles, in later life there are others.
I think recovery connects with restoration of a person to the place they expect to be in life. Social role, meaningful relationships, capacity for expression, economic sufficiency, control of one’s body, all that. This is always complex, and is seldom about technique, or what kind of assistance a person might require, or whether they are obedient to one or another authority.
So the point of recovery for me is having one’s life back, in some sort of context that makes sense. So what if it’s a struggle! Lots of people struggle. So what if a person zones out sometimes, if there is a way to compensate and still have a family role, and safety, and maybe employment.
Everyone has a range of capacities, a set of vulnerabilities and certain risks. People who are doing what they must to adjust to all this and move forward in life are “in recovery” while climbing out of whatever hole their medical condition has landed them in. Once they climb out, they’re “better now” or “doing okay.” Recovery has been achieved.
Thanks to Tina for waking up the comment email system and reminding me of this wonderful post and discussion.
The more I work on the “stigma” concept, the more committed I become to the notion that stigma is bundled up with “social distancing” and is part of the human operating system.
As long as a condition is different, scary or culturally discounted, people will tend to stay a little distance away, or avoid/deny that they may be affected by the thing. The reason “education” doesn’t work is that education REINFORCES the classification/difference. Classification leads to us/them situations, and unequal results (discrimination).
Hanging out with people and building relationships works along an entirely different channel — there’s “comfort” in knowing that someone else remains a whole valid person despite what they are experiencing. You can have a feeling of fellow-humanity, and you realize their essential quality is not “suffering” or “brave.” It’s that they are the person they are, the person you love and know.
I think that true anti-stigma emphasizes common humanity, and what it takes to build strengths, and diversity of capacity and talents, and positive values like comfort, caring, charity, and support through difficult times.
NAMI has a new campaign called “listen” that might actually be on the right track. I spend a lot of time trying to have people spend time building relationships with folks who use services and supports. Listening is a place to start. Sitting close together, and giving feedback that indicates you are truly listening are part of a process called “mentalizing,” or connecting and figuring each other out. Peter Block has techniques for conversations that build a feeling of community in his book Community: The Structure of Belonging. This sort of community-building is true anti-stigma work. It builds social capital, tends to equalize power disparities, and supports the notion that we all have a stake in this world.
Regards to all. –pk—
Okay. The East vs West business was just me guessing, I suppose.
And I do worry about sustainability.
Thank you so much for your writing and scholarship.
A great start on the complexity of all this. I’ve written a much shorter piece about chaos and mental health here: http://redesigningmentalillness.blogspot.com/2012/08/chaos-of-needle-man.html
But I’m not ready to toss out positivism, science, psychiatry, life in America, the notion of health vs illness, safety vs. risk, an ideal relating to worldly success, family life, social controls, government intervention and so forth. These work for me (to a certain extent). I don’t favor Eastern civilization or methods over Western civilization or methods. We all have our druthers.
But thank you nonetheless for this beginning. I am looking forward to reading the second half of this post.
This is an excellent article. Most anti-stigma work is ineffective.
Stigma ends when people get to know each other. Social acceptance is experienced socially. Nothing else works.
Capable folks are everywhere, even Ohio. We may do a tour if Corinna and I can figure out logistics. The whole point is to build a network of people who can have a say and collaborate in the real healthcare economy. My contact info is at http://www.churchbasement.net or http://www.humanintevention.net or follow @pkomarek on twitter.
When I revised my book DEFYING MENTAL ILLNESS, I kept most of the book focused on a process of recovery, but added a new chapter called “Beyond Recovery” based on the blog post here http://redesigningmentalillness.blogspot.com/2012/07/stop-recovering-start-flourishing.html My new concept is “flourishing.” A normal life, living to one’s capacity, in a way not defined by disability. People perpetually “in recovery” are like folks who climb out of a hole and turn back to gaze at it, entranced, still stuck. You have to walk away from the hole to complete the rest of your life’s journey.
I agree that mental health reformers have generally come from outside of mainstream treatment systems, but I’d also give some props to well-meaning people without “lived experience,” especially Dorothea Dix, and the founders of the NAMI movement, and political actors like JFK and President and Mrs. Carter. It took so long to get to the point where people were even treated humanely. Like every civil rights movement, we need allies everywhere.
This is a social change movement, and like all such, it is playing out over the course of decades, and on multiple fronts. JFK and the authors of the Community Mental Health Centers Act generated resources and forums that made it possible for mental patients to collaborate and formulate the early literature of recovery. The same medications we see as grossly imperfect today made deinstitutionalization possible.
I started working through the concept of recovery years after the worst part of my illness, and still occasionally quibble over whether it does enough to let people see their way to a life not defined by illness. Unfortunately I have also seen bureaucracies manipulate the recovery concept in order to maintain power imbalances.
The movement to professionalize peer specialists parallels what is happening in the field of addictions: University-trained professional counselors are wiping out the true peers, whose strength was their experience, their cultural connections, and their capacity to relate informally. In mental health and addictions I think “peers” are more important to recovery than “specialists.” I worry about the economics for these workers too.
From my vantage point, what’s exciting now is the space where we affirm that people have multiple capacities, and that people retain a variety of strengths even when they encounter trouble in their lives. Even folks who work within the medical model are coming to realize that. People like Milt Greek are bridging cultures by describing how to connect with people who are actively psychotic. When people ask me how to reconnect with someone they have lost to psychotic thinking, I have a way to express what’s going on within their person’s experience, and also to have a way to explain that the strength of their relationship is the real ticket to hope.
The next step is not within the mental health system at all. Reform does not happen within the system. It happens within the wider community. It’s one thing to invent a kind of therapy and a program to deploy, but quite another to construct a social narrative that confronts the justified fears of the larger society. We need a narrative that addresses how everyone stays safe.
This is a good discussion. The social entrepreneur label fits you, and me too. Yet what I do in the mental health area doesn’t define my whole agenda. Mine is social policy activism, about making things better for us all, using politics, writing, education and whatever else is handy. Mental health themes run through some of today’s most critical issues, from poverty to health care to workplace violence to education. People who have first-hand knowledge of these challenges have something to contribute in all of these areas.
Thank you so much for this report. What a resource for the whole experience of mass disaster recovery. There is great strength and resilience in communities – we seldom look for ways to let it show up.
I hope things are getting better for you.
BTW it’s Thanksgiving Day here in the land of funny accents.
Thanks for outlining what’s in the MHFA program.
We need to simplify popular education on these topics. If you’re not a clinician, diagnosis is beside the point, but people do need vocabulary that helps them access more information and talk to doctors. I’ve done this sort of work for years. It takes a couple of hours for me to cover the basics, and get as far as suicide prevention. People need to know how to be supportive, and how to connect people with treatment when they need it, and when to call 911.
As for stigma, that’s in the air. The audience shows up ready to listen. It is much more important to help learners connect with the experience in human terms, and know what to do to head off trouble, and have some way to create a path for moving forward.
For me, the biggest drawback to Mental Health First Aid is the cost of certification. I looked at getting trained as a Mental Health First Aid presenter, but the cost was prohibitive. They’ve done a good job packaging the concept and developing the brand. I’ve read about Emotional CPR – it’s another well-branded concept. I do worry about concepts that are explicitly “alternative” because that label is self-marginalizing.
I think we need to get to the raw center of all this in our educational efforts. Everyone’s work can simply aim to promote good health, keep families together, support normal living, and help with safety. There are so many layers to these experiences, and people so diverse, there’s a way for everyone to make contact, pitch in and help out.
I think many physicians get trapped into believing that what they are doing works through a very typical human self-deception process. They seek out confirming information, and get it because they are looking for it. They think of themselves as scientists, but stop practicing real science themselves as they rely more and more on surrogates (like pharma marketing people, for example).
I think social inclusion must focus on connecting with the larger society, not the small world of the mental health system. We must change the larger social conversation.
Dr. John Grohol came back from the Carter Center symposium expressing similar feelings about the unnerving effects of “professionalism.” Here’s the link to his article. http://psychcentral.com/blog/archives/2012/11/05/how-psychology-psychiatry-discriminate-against-people-with-mental-illness/
At some point we do need to come to terms with the effects of the scientific mindset. If you’re scientific, you get rigorous and focused. You need to dominate the variables and control conditions, and track results. It’s easy to develop “person blindness.”
Everyone’s thinking is vulnerable to “system effects” like these. Changing systems is hard. You can find a list of powerful systems change approaches here: http://redesigningmentalillness.blogspot.com/2012/06/where-can-we-get-some-leverage-to.html
Keep plugging away at it.
I helped Milt Greek put together his book and website http://www.schizophreniablueprint.com. Milt taught me that people with hallucinations and delusions are having experiences that are meaningful, and accessible to people who want to help, if we take the time to listen. He stresses the need of a mentor to help the person with symptoms learn his way out of them.
After hearing an NPR broadcast about the history of the DSM, I revised my own book to stress the changeability of any classification system. It is worth discussing labels, but I’ve decided it’s inappropriate for a non-clinician like me to dig in and fight over labels when I will never diagnose anyone. And to a certain extent the labels mostly create power differentials and stigma. They are grossly appropriate signposts, clues for figuring out how to proceed with living one’s life.
I prefer to focus directly on recovery. You need to know enough about you’re facing to put together your plan. You need social support, plus whatever helps you move forward (which might include meds), and appropriate attention to stress and risk. Recovery is not really about the diagnostic label or the treatment.
I think the less dogmatic members of modern anti-psychiatry have morphed into a kind of “consumer protection” movement. The science is still pretty crude. Many pharma abuses are showing up in court cases. We still have a psychiatric industry with old-school power hangups, plus a few notorious sinners. I am not anti-psychiatry but I expect honesty, respect and accountability — and I expect the same from social workers and others who work with vulnerable people.
The original insight that these disorders are social constructs is still somewhat valid. Certainly the DSM is a classification system based on pattern recognition, committee work and little else, but right now there’s no better way to go after it.
And as for the notion that not every eccentricity should be medicalized, that goes with the territory. These days more people get to have a say.