Talking Over Fences: Why I Am Helping to Organize Community Dialogues on Mental Health

Faith Rhyne
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It’s been a while since I posted here on Mad in America. I come by and read, but don’t comment much anymore. For the past few months, I haven’t much felt like talking with people.

That is about to change.

My last post here was made right after a community member who was a part of our local mutual aid group committed suicide. The rest of the summer was spent in a long haze of days cluttered with emails and restless children, a wilting garden and a slow edging back into myself.

I still kept up with local organizing and started to do some work as a support coordinator with The Icarus Project, to build stronger local group organizing networks and help out with some of their plans for organizational development and an expansion of the radical mental health vision to include more people of color, queer and gender non-conforming folks, and people who identify as poor and working-class, to work across lines of disability and culture.

I’d think to myself about how remarkable it is that, three years ago, I felt as if I were one of the most isolated and disconnected people in the world and my life was – objectively speaking – on the verge of a total and final collapse. Every day, as the summer wore on, I’d count up my blessings, in friends and opportunities, my family and all my possible futures, but I felt myself getting more and more quiet; becoming exhausted.

I posted my introduction to the Lived Experience Research Network with a ½-hearted statement about my graduate studies and a musing that maybe I ought to just pack it all up and move to the woods, write stories and work toward my goal of eventually being an elderly outsider artist.

I began to notice that every time I said anything, I’d feel insecure and anxious.

I stopped posting to Facebook.

“I don’t even feel comfortable with people,” I’d tell myself. “I’m a loner, not a community builder.” However, when I read the visionary texts that I was assigned for my Transformative Social Change courses, my mind felt clear and what I have come to recognize as my heart’s truth would swing into the feeling that tells me that something is vital. Almost as if on cue, the habitual doubt that I learned in my years of people not believing in me would pop its ugly head up, sneering, “Yeah, right, Faith. Like you could really do work like this. You’ll mess it up. You shouldn’t even try.”

It shouldn’t have surprised me that I should come upon such a time of uncertainty. I am, after all, rebuilding my life, and over the past couple of years – with the help of friends and supporters – I’ve cultivated a lot of options. Sometimes, it is hard to know what to do and I find myself constantly negotiating between what people want me to be and who I am. Recovering from self-doubt and learning to claim my own potential is a matter of making the daily choice between listening to the vestigial voices of people who – in their own failure – did not see me clearly or believe in me and choosing, instead, to take chances, to challenge myself to trust those who believe in me and value me, and – finally – to believe in myself and in the world, to not give up and drop out, but to keep going, to see what happens if I try.

The death of a mutual aid collective member had shaken me and discouraged me, caused me to doubt my ability to be an active and supportive community member.

I began to avoid people who wanted to talk about the suicide. I didn’t want to talk about it. I wanted to do something about it.

Standing outside of a coffeeshop, a few collective members and I discussed what might have happened differently if our local mental health system had been more accessible and helpful to this person we knew, who had turned to those services for support; this person who – on the day before he died – plainly stated through frustrated tears that he felt “failed and betrayed” by the providers he had trusted to help him.

I understand that some people are staunchly opposed to public mental health services, and I certainly understand why. However, millions of people reach out to these organizations and agencies for assistance in getting through difficult times. It is common knowledge that the “help” they get is not always helpful, but I have definitely known a few people who found the support they were looking for in the public system and, let’s face it, until there are widely available and accessible alternatives that people are able to turn to, many people who are struggling reach out to public and private providers for help.

Regardless of what I think or feel about it, the mental health system definitely exists and, as many people know, it can do a lot of harm to people – from negligent and abusive psychiatric drugging, to mis-conceptualizing human distress as a mysterious biochemical disorder while ignoring the role of trauma/stress in wreaking havoc on our neurochemical landscapes and the power of a broken heart to wound our minds, to re-traumatizing and exploiting people who have endured controlling and manipulating relationships within their lives.

Yet, I would be lying if I said that I thought no good could ever come of publicly funded supports for people in distress. It just depends on what sort of help is offered, and whether it is actually helpful.

In that conversation outside of a coffeeshop, fellow members of the Asheville Radical Mental Health Collective and I talked about what it might take to create a peer-run respite, to have accessible and trauma-informed safe spaces where people could go if they just needed someone to listen to them or to support them in the process of learning how to heal within their lives or to find connection with people that might make severely and persistently difficult lives less lonely.

“It’d be a lot of work.” We looked around at one another.

I felt exhausted, but some small spark of inspiration was lit in my mind.

“What if we organized some talks with people in the community, gave them a chance to share their experiences and identify concerns. That might build a really strong base of advocacy.”

We stood there, four of us, and we sighed.

“If there had been peer respite or a safe space for him to go, he’d still be alive.”

I decided to hold onto that thought.

A couple of months after that conversation outside of the coffeeshop, I received an email inviting me to participate in the Peer Committee of our local Recovery-Oriented System of Care Taskforce – which is part of a coalition that developed out of a group which previously advocated primarily for quality and accessibility in substance abuse services.

Early one morning, I went to meet up with a local consultant who does peer trainings, the program director for a large private recovery community and a fellow survivor-friend, whom I met at a book-launch event and who currently heads up the local NAMI, in spite of the fact that she refrains from using the language of “mental illness.”

“What am I doing?” I wondered, as I walked into the inhospitable building that houses both the local NAMI and the local MH/SA/DD funding management entity – all located right across the street from the hospital.

I thought about Ted Chabasinski and the bus ride to Philadelphia’s Occupy APA event.

I considered all the criticism surrounding the word “recovery,” the word “system,” and the word “peer.”

Did I really want to be involved in something called the Peer Committee of the Recovery-Oriented System of Care Taskforce? Would I still be a radical? Did I even care?

What would that mean?

As a person who is interested in the processes that support transformative social change, I believe that it is important to work creatively and dynamically for change. It makes sense to me to explore advocating within the system, for the purpose of encouraging transformation of that system.

It was decided at that meeting that we would begin to explore strategies for developing alternatives, and we determined that while we would far prefer to somehow magically create a network of empowering, accessible, holistic off-grid alternatives, that the possibility of working with the system to expand high-fidelity recovery-oriented services and develop crisis alternatives was not completely out of the question.

We used words like “partnership” and “collaboration.”

Later, reading over the materials that SAMHSA has created on the process of implementing recovery-oriented systems of care, I shook my head.

It wasn’t that I was disgusted, or offended.

It was because a lot of the goals sounded . . . well, okay, if not good.

At the next meeting, my friend said, “Hey, look at this…” and turned her computer screen to show me the Creating Community Solutions website, which is the initiative that was developed to support the National Dialogue on Mental Health. President Obama called for the National Dialogue as part of the response to the Sandy Hook shootings of last December. Featured on the mainpage of the www.creatingcommunitysolutions.org page was an article about the NPR Story Corps feature that included Liza Long – of “I Am Adam Lanza’s Mother” fame – talking with her son about his “mental illness.”

There was a map, with a bunch of little digital pins scattered across the states.

The National Dialogue on Mental Health is introduced with the following statement:

“The President’s plan to protect our children and our communities by reducing gun violence directs the Departments of Health and Human Services (HHS) and Education to launch a National Dialogue on Mental Health with young people who have experienced mental health problems, members of the faith community, foundations, and school and business leaders.”

Somehow, there was something in all of the decidedly grim context that, to me, shined a little.

“What might happen here if people talked about what is helpful and what isn’t?”

A big part of my recovery from psychiatry has been regaining my sense of confidence and viability as a valued member of my community and as an activist. What would happen, I wondered, if  my survivor-friends and I, with other people from the local recovery community (which includes open paradigm radicals who question the implications of the word “recovery”) supported the organizing of a Creating Community Solutions dialogue here?What if we helped to organize a whole series of them?

As someone who is well-versed in mutual aid, inquiry-based education, and working with young people who are identified as being “at-risk,” it was powerful to think about people talking with one another and listening to each other, sharing ideas and hopes and fears for the purpose of potentially creating meaningful change and real supports for self-directed and strengths-based navigation of challenges with our human experience.

What if we talked about the difficult truths? For example, it seems that – for some – the circumstances of life, as set in place by economy, discrimination, and profound difficulty in their human experiences, make recovery less of an accessible option than for others.

How could we better honor those realities?

In the part of my mind that believes that something in the world is striving for good things to happen and for us to collectively find new ways of seeing one another and supporting one another in being fully human, I marvel at how convenient it was that a rag-tag group of survivors standing outside of a coffeeshop had plans that align so closely with the national initiative’s goal of bringing together diverse stakeholders in dialogue about mental health, community-identified needs and realities, and ways to support healing . . . of individuals, families, communities, and systems.

Sitting in meetings at boardroom tables, I have occasionally found myself with tears in my eyes, because I have seen that the people who work within these systems – people that I used to just think of as blank-eyed “mental health system bureaucrats” – are, themselves, deeply human. They’ve surprised me and inspired me, in both their commitment to trying to do things differently and in their support and appreciation for survivors and community members being at the table.

Community Solutions WNC is holding its first public information and organizing event this week and peoples’ interest in this initiative is encouraging. What is more encouraging, at least to me, is that I am integrally involved.

As a person who once assaulted her own mother in a teenager-on-Prozac rage and whose young potential was badly compromised by involvement in misguided treatment, it feels important to me that I be a part of this, that I support this happening in my community.

These dialogues that are being organized are interesting to me, full of both chicanery and possibility. I somewhat doubt that many of them will produce sustainable outcomes. Most of them are big, single-day events, organized by mayors and NAMI branches, schools and the United Way.

We’re approaching things a little bit differently here, because we want to talk with as many people as we can and get people involved whose lives are most affected by the policies and procedures that define local systems. We want to center this initiative around people who might be most vulnerable to not having their needs met in ways that are helpful, accessible, and culturally-appropriate. More importantly, we want to build community and find commonality while intentionally making space for people of color, homeless folks, and the LGBT community to talk about how their self-identified mental health needs might differ from the mental health needs of middle-class, white, straight-people – who are, by and large, the people making the decisions about what gets funded and why.

We want to create opportunities for people to talk about their different ideas about what “mental health” even means and what they believe about “mental illness.”

We have no interest in debating with people.

We want to talk with people.

We want to listen to them, and we want them to listen to us.

Some people call me naïve because I have an inordinate amount of faith in the innate human capacity to make good choices when given the opportunity and presented with ample evidence to support them making a decision that is informed, not only by data, but by recognition of their own individual best humanity and potential to be a force of healing and justice in the world.

I really do believe that things can be done differently, that we are not constrained by old models and that, in keeping with the workings of systems in nature, things inevitably change, especially if they don’t work.

Our local dialogues will not be organized by the mayor, or by the mental health system.

They will be organized by consumers, and survivors, and ex-patients.

Hopefully, they will also be organized by kids . . . because many of them are also consumers, survivors, and ex-patients.

When I worked as a volunteer Guardian ad Litem for teenagers in state custody, I only worked with young people who were “placed” in Psychiatric Residential Treatment Facilities or group homes. The very first time I disclosed my own lived experience in a way that seemed to encourage someone else was in speaking with a young woman in a locked facility. We were sitting in the recreation room and it was the second time I had met her. We weren’t sure what to talk about. I was a new GAL, a white woman with tattooed hands. She was a young black woman whose family was in shambles.

“You know,” I told her, “I was in a place kind of like this when I was a teenager. My situation was a lot different, but the place I was in was a lot like this place.”

She looked at me and smiled, asked a couple of questions and then she began to tell her own story.

Since then, she has graduated and is now taking classes at the local community college, which would be a great place to hold a large public forum on mental health in the Spring, following a series of smaller, community based dialogues.

I’ll have to get in touch with her and see if she might want to help us to organize some young people.

To me, this is radical.

 ————————

Community Solutions WNC is currently building infrastructure and organizing strategies. We have a Facebook page and a website that we refer to as our “infoblog.”

We are actively building relationships with community members and local organizations, including the Mountain Council Recovery Coalition, and plan on seeking endorsement from the City of Asheville.

We are grounded in the principles of participatory organizing, deliberative democracy and sustainable advocacy.

For more information, or if you know of anyone  – in North Carolina or elsewhere – who may be interested in supporting this initiative through consultancy, in-kind or service (e.g. simple website design) contributions, please let us know by emailing [email protected] or calling (828) 351 4113.

Of further interest:

Faith Rhyne at last year’s Esalen conference on alternative perspectives on “psychosis.” 

31 COMMENTS

  1. Faith, thanks for having Faith in change! I believe that if you see each person as a human being,as you stated you did when you teared up …. there lies potential that we can all connect at the “community table” to acknowledge what’s not working, explore alternatives and continue to evolve, including the traditional system workabees. It starts with that one person who exposes their questioning, discomfort, doubts, disagreement and this can spread to influence other colleagues. I’m watching this take place now at our county mh system and I see the change a coming! It definitely has been fostered by survivors speaking up, our Peer Respite House providing a true alternative for people to get support has been, and continues to be, a living example of mutuality rather than power dynamics, I’m the doc/ therapist, oppressive “do as I say”.
    I also agree that this dialogue must be lead by survivors, having allies join, yes but the people with lived experience must take the lead!

  2. “I understand that some people are staunchly opposed to public mental health services, and I certainly understand why. ”

    This was a wonderful article from beginning to end, but I just want to focus my comments on this theme.

    My feeling is that we who wish to strive for a better way of healing human partnerships really don’t have the luxury of just writing off public mental health service system as a lost cause. The reason I believe this is because millions of people are either forced into these systems against their will (through commitment or other means) or forced into these systems because poverty and structural inequality mean they simply have no access to anything else.

    The people forced into this system are often the most socially marginalized of all persons in our society. They are the most exploited, and often the most vulnerable to that exploitation. If you had experiences that society labeled as mentally ill BUT you were also rich with a vibrant social network abundant with personal resources, your experience would be spectactularly different than if you are desperately poor with few or no supports.

    So no matter what our attitude toward the public mental health system (and my own is staunchly critical, though I work in it) we need to keep the millions of persons who use and/or are stuck in this system in our hearts and minds. We need to be willing to get into that system and work in it, if for no other reason than to try and protect and support the rights and dignity of the “clients” of the system wherever we possibly can.

    At the same time I think we need radical, if not outright revolutionary change, (in which they entire mechanism of state mental “health” would be dismantled and replaced by mutual-aid systems driven by persons with lived experiences engaged in deep, local collaboration with friends neighbors and community), I also feel I have a duty to be a loud voice for change within the system as it presently exists.

    We need people who are willing to speak truth to a system of immense power, to challenges its evidence-absent assumptions, to question its bigotry and dehumanization of those who receive its “services.” We need to make the system uncomfortable, call “bologna” on its baseless claims, present clear, persuasive supporting evidence for a better way, and be willing to face persecution because of it, if and when it comes to that (and in my experience so far, it always does.)

    We need radicals INSIDE as much as we need them outside. I believe that is the only way to undo the monster machine of “mental health” as it currently exists and create a path toward something better.

  3. Faith,

    I’m gonna go way out on a limb here…

    When it comes to the public mental health system, *as it exists to a large extent today in most parts of the country*, I think it might be better to do *nothing*…

    That’s right, I honestly believe it’s better to do *nothing* than to get a psychiatric label, a boatload of drugs and “treatment” as the system exists today.

    Simply put:

    “To do nothing is sometimes a good remedy.” – Hippocrates

    Thankfully, people like *you* are changing things.
    Keep up the great work!

    Duane

  4. Duane,

    In my opinion, that is a philosophical argument we can’t afford to make at the moment. Would it be better to do nothing that what is currently happening in and through mental health? Maybe (probably.) But that does not change the fact that people are forced into public mental health systems and services whether they want to be or not – sometimes literally against their will, sometimes due to structural oppression and economic injustice that leaves people feeling that there is little other choice.

    Public mental health services aren’t just seeing a counselor – in fact if they were more that they might actually be better. Instead public mental health services are regularly tied to housing, physical health services, vocational support and the like, especially if and when an individual receives SSI/SSD.

    So poor and marginalized individuals and families will continue to enter this system while we stand on the outside and complain about it and advocate for its elimination. I personally believe that it is better – no, in fact I believe it is absolutely critical that such person have allies and advocates on the INSIDE of a system that many people have no choice but to engage with.

    It’s imperative that we have radicals on the outside, and it is imperative – possibly even more imperative that we have courageous subversive radicals on the insight fighting for and seeking to defend are human brothers and sisters while challenging the irrationality of the status quo thinking that keeps the system afloat.

    Again, in my opinion, its never as simple as just “checking out” about the current public system as though millions of people aren’t impacted by it every single day. Just saying how much it should be done away with isn’t enough, and even taking direct action to see that happen isn’t enough. We need people behind “enemy lines” if you want to look at it that way, to try to help mend the wounds this system is creating, help people navigate through it and escape from it, and the like.

    For me, the first time I partnered with a person stuck in secure psychiatric incarceration and gave him support and tips on how to beat his recommitment hearing (and when he beat it allow him to walk out of the front door of the facility a free man) was the first time I was confident we can’t just walk away from this broken machine – we have to try to be there for the people who are caught up in it.

  5. I do have to make the caveat that I’m not sure I am as hopeful as you are, though I admire your optimism and feel like we are not at cross purposes.

    Right now I tend to see participation in the system much more like we are Oskar Schindlers – not having hope that the machine will actually change its course, but committed to saving as many lives as we can.

    (slightly flawed analogy, believe me I know I don’t “save” people, but I hope my meaning still comes through)

  6. Well, it’s fine by me if there are mental health professionals on the right side still working in the system. But Faith concedes that as a “peer” worker in the system, she has basically been told that she doesn’t have to work there if she doesn’t want to, meaning in fewer words, shut up or we will fire you.

    Mental health professionals like Yana, having more credentials, of course have more leeway, plus her county mental “health” system is more liberal than most. But there is a limit beyond which she can’t go either.

    (I should say here that I know both of these people personally.)

    The problem I see about working from the inside, and these “dialogues”, which I am not against, is that they do nothing to change the beliefs that the general public has, about such things as “are schizophrenics really human?” which is one of the questions of the day in American culture, thanks to people like E. Fuller Torrey.

    Keeping the discussions of these issues entirely within the tiny (and rather weird) world of the mental “health” system assures that nothing changes in the larger society.

    And if the witch hunts and Nazi-like attacks on people with psychiatric labels continue the way they are, even people like Yana, with her fairly secure job, might find that being humane and kind to her clients might lead to being fired or worse.

    If we don’t attend to changing the minds of the public, if we don’t get out of the little bubble of the mental “health” world, we are going to wake up and find a lot of us, especially survivors like me but kind mental “health” professionals too, in a grim situation.

    Torrey is not a clown. Politicians and the media are listening to him. We all know what he wants, and he will get his way if we don’t fight back. We need to pay attention to the outside world.

  7. Faith and All

    As someone who has worked 20 years in community mental health as a therapist and as a huge critic of Biological Psychiatry, I would like to chime in a bit on these important questions.

    Over the 20 years I have witnessed the gradual take over of these clinics by this oppressive model of treatment; it has been a painful and crazy making experience. This takeover so thoroughly dominates almost every aspect of how people are treated that it raises serious ethical questions of how to respond when working on the “inside.”

    Yes, there are many dedicated people working in these clinics who are clearly helping many people. However, given the growing number of people treated by community mental health clinics who are put on psychiatric drugs (sometimes 7 or more prescriptions at one time) it has now reach a critical mass where one might make the serious argument that there is “more harm than good” taking place inside these clinics.

    There desperately needs to be an organized movement of radical activists on the “outside” taking strong actions (targeted demonstrations and education exposing Biological Psychiatry) in order to shake the walls of the establishment and create more favorable conditions for radical change within. WITHOUT THIS MOVEMENT WE WILL REMAIN “VOICES IN THE WILDERNESS” WHO WILL BE COOPTED, MARGINALIZED, ISOLATED, ELIMINATED, OR PUSHED OVER THE EDGE INTO DEMORALIZATION OR INSANITY.

    We need an approach of “walking on two legs”; where both the “inside” and “outside” work is both strengthening and complimenting the other; this makes it more difficult for the “powers that be” to push us to the margins or demoralize us into quitting. It’s much better “to burn out in battle” fighting for our principles than to “fade away.”

    One example, I recently worked with a seasoned therapist (someone who works with those with the schizophrenic label) to present the Eleanor Longden video (The Voices in My Head) at a team meeting for our entire staff (30 therapist and 3 psychiatrists). This was combined with some print outs that challenge the medical model and the current standard of treatment involving so-called antipsychotic drugs. There was a spirited discussion that followed and very defensive reactions by one psychiatrist. We held our own and then some dealing with these hot topics. The staff found it stimulating and challenging. I was amazed how this seasoned therapist, whom I had thought was not a critical thinker and somewhat jaded over the years, enthusiastically took up this topic. She was quoting the Wunderlick study and speaking out strongly against the medical model.

    I constantly pass out key articles criticizing Biological Psychiatry to people working in the clinic, including the doctors. Some doctors are receptive and actually share their dismay at the those prescribers engaged in the more obvious examples of poly-pharmacy at our agency.

    This “inside” activism is not easy to do and I have had some conflicts with the administration on several occasions. I plan to increase this type of resistance on the “inside” which most definitely involves more risks of being fired. I have found that I cannot live with myself if I don’t dare to take these risks. The moral dilemmas working in these environments are very intense and are constantly in a state of flux. We need the support of other activists (in collectively organized groups) to be able to successfully negotiate these “uncharted waters.”

    The stakes are high for the increasing number of victims of this system and for those working to make change within it. We all have much work to do. “Dare to Struggle, Dare to Win!” “There is no victory without risk.”

    Richard

    • Thanks everyone for sharing their experiences and the conflicts of working on the inside.

      “We need the support of other activists (in collectively organized groups) to be able to successfully negotiate these “uncharted waters.””

      What sorts of support would you want from activists on the outside? Can you give me a wish list?

      I am focusing my efforts to work on the outside. I have the sort of personality that cannot tolerate working from the inside, so I would rather build bridges from the outside. I am currently trying to figure this thing out: where to invest my resources, energy, time, and money, to make a difference. It seems that successful coordination of activists inside and outside to system could be a winner.

    • Richard, once again I see you as someone with the same goals and dreams as I have. Will you please contact me through MIA? I don’t want to post my email address here, because when I did that in the past, I got a lot of unwanted contacts.

      I want to work with you on a project I am trying to start, one which I think will definitely interest you. Please get in touch.

  8. I think with the media Tom Insel/NIMH questioning long term use of drugs and the dsm5 ( not that I believe for one moment that he is an ally to the human rights movement) it has worked to our advantage to speak up more from the inside, at this stage in my career I’m more willing to say ” let them fire me” for speaking my truth …
    I was inspired by Faiths blog here initially as it resonated to create more community dialogue, I liked the sound of “talking over fences”. I think this might be how we move forward is finding connections with ” the other side”‘places o f dissatisfaction with the system that are shared. One example might be Family members, who have had a strong voice, they aren’t happy with the system either and many hate seeing their loved ones handcuffed by police. And put in seclusion rooms and medicated, Now many are at a loss as NAMI is hearing the criticism of the medical model and I’m sure is at a cross roads ….just one example…many are seeking answers. Of course most want medical answers, but meanwhile there aren’t any, I just believe there’s opportunity in having these dialogues in our communities to begin reshaping systems. It’s so true what Richard Lewis says, that the recipients of these public services are often the most vulnerable and poverty doesn’t create choices to allow people to go to “alternative healers” so it’s the public community mh clinics that need to better respond to the human experience in a humane manner

  9. Great discussion! There is definitely a place for both “outside” and “inside” movements, and both are vital to success. We need people with credentials and insider credibility to challenge the dominant paradigm, and we need tons of active survivors telling their stories and demanding change. And we need writers like Bob and many others laying out the science and the sociology and the economics of change.

    What I think is MOST needed is to create a system where getting people more capable and independent and empowered is the goal, and where the incentives encourage instead of discouraging this. That won’t happen without some “system change” work from the inside. It will be slow, it will be awkward, it will never look exactly like we want it to, but change does happen, even in giant bureaucracies, if there is enough weight to overcome the internal momentum. Meanwhile, we keep educating, one person at a time, and each of us uses our weight and expertise where it can help the most. There is no magic – we just have to keep pushing and not give up until it’s done!

    —- Steve