Or… Understanding Why Some People Choose Co-Optation
Or… The Powerful Impact of Being Discredited
Or… I am tired.
I cry a lot at home. I cry at movies, commercials, reality TV, touching things my kids do, and so on. I guess, when I’m at home, I just feel safe to express whatever emotion comes up, and come up they do.
I don’t, however, cry at work very often. More like just about never. One recent Wednesday, there was an exception.
I got a call from a colleague – not someone who works within the Western Mass Recovery Learning Community (RLC), but someone with whom I’ve worked fairly closely over these past six years. To be clear, this colleague is someone for whom I have a great deal of respect and who has been a tremendous support to the work I and others have done through the RLC. I don’t hold this person at all responsible for the things that were shared with me during that conversation.
That said, it was a difficult talk. First, we discussed the negative feedback and ‘concerns’ that had arisen following the RLC’s sponsorship of a couple of ‘Withdrawing from Medication’ workshops offered by David Cohen. In truth, David was great both during the workshops and as a conversationalist in the in-between moments for the two days he was in our area. He is (among many other things) co-author of Your Drug May Be Your Problem, principle investigator for the Critical Think RX curriculum, soon-to-be professor at UCLA (following a long stint as professor at Florida International University), and a true wealth of knowledge on the topic of withdrawing from psychiatric drugs. He was not the problem.
The problem was the typical reaction one can expect when you bring together people in clinical and a variety of other roles who have been indoctrinated to think that medication is the way, and you offer clear and direct challenges to their belief system. Many people (most, even) responded well to the workshop. Some did not. A couple of the people who did not chose to express their concerns on the workshop evaluation form and leave it at that. Others decided to direct their concerns to our funding source.
As aforementioned, these sorts of reactions are typical. Expected. Predictable. But, after a while, they become exhausting and sometimes… I. just. Get. So. tired. I’m not sure how many people understand how debilitating it can be to take on a job where your credibility is so constantly brought into question. I participate in many meetings with providers, and as I sit there, I am keenly aware that it is simultaneously my job to ‘push,’ but not ‘push too far,’ even though ‘too far’ is a forever moving target that isn’t clearly defined and left hidden for me to trip over at any time. I am asked to join specifically for that purpose, and yet my invitation could be (and has been) revoked precisely for the doing. Although many have been quite supportive of my presence, I’ve also been called in by administrators for scoldings at times because I “made other people at the meeting uncomfortable” (which quite frankly I consider a job well done!) or quietly dismissed for unspecified reasons.
When I worked in a traditional provider role, I spent five years being praised for my ‘clinical’ expertise and, more importantly, mostly left alone to do my work. Once I ‘came out’ as having my own psychiatric history and more openly began challenging the ways of the system, I went from clinically praised to scrutinized in literal moments, before finally losing my job.
Having lost all my credibility (and any desire to work ‘in’ the system), I found my way to the Guiding Council of Western Mass and then the RLC where at least I could be a part of building a team and a community that would create some degree of shelter from the sorts of judgments, rigidity and myopic perspectives I’d had to deal with so up close and personal in my prior role. And yet, the shelter is full of holes.
Because a part of our mission is to change the world – and not simply cut ourselves further off from it – we are still fairly constantly interfacing with clinical providers, family members, reporters, etc. That’s the way we want it. We strongly believe that those who have been labeled and those who have not are separated more often by timing, privilege, resources and the like as opposed to some inherent difference in our brains. We largely agree with the concept popularized by ‘Open Dialogue’ that problems often lie in the spaces between people, rather than just in one person on their own. And if we believe those things, then we must include everyone in our work. How could it be any different?
So, we applied for (and were granted) the ability to award Continuing Education Credits for Licensed Social Workers, Licensed Mental Health Counselors, and Licensed Marriage and Family Therapists. At the request of a local pharmacist (which I thought was pretty great!), we explored applying for Continuing Education Credits for Pharmacists (though found them too expensive to manage at the moment), and looked into the possibility (also by request) of credits for nurses in the future. I personally spent many hours sending out e-mails and flyers to various professionals and organizations, my son’s pediatrician, and even my former debate partner, Psychiatrist Ronald Pies. We invited everyone to join us, whether or not they were likely to agree with the material (and perhaps particularly if they would not). After all, how can we ever hope to make any progress if we are not at least having these conversations?
And yet, still, I find myself overwhelmingly weary of it all. Following the workshop, another individual with whom I work shared that concerns were being raised about our community bridger work, where people like fellow blogger Sean Donovan will be going into hospitals to connect with individuals hospitalized there and supporting them to transition back to the community if they so desire. Were we, in fact, too anti-psychiatry to be trusted? Did we have the good sense not to be surreptitiously holding ‘Withdrawing from Medication’ groups on the actual hospital units? (I’m paraphrasing here.) That person was given the job to check in with me about these concerns and was trying to make the best of it, calling the inquiry on the topic, “a fair question.”
Yes, I suppose these sorts of questions are fair. When they are a part of a direct dialogue that incorporates the goal of moving toward shared understanding, transparency and ongoing communication. They begin to feel decidedly less ‘fair’ when they are repetitive, aimed at the funder rather than the source, bearing so little relationship to what we are actually saying and doing (we are not, for example, particularly secretive about much of anything!) and couched in assumptions and fear.
When I first began this piece, I alluded to the fact that there was more than one thing that was discussed during the phone call that led up to my work tear experience. Indeed, there was one other thing. It was about my shoes. Or rather, the lack thereof.
For those of you who don’t know me in person, I like to take off my shoes. A lot. When I leave them on too long, the skin on my feet start to feel like its burning and I get preoccupied with my discomfort. So, I take them off. If I’m in a meeting, you might not realize it. I’ll do it discretely under the table. But if I’m at one of our centers, or just about any other place where I’ll be spending an extended period of time, you’ll inevitably catch on.
I’m never entirely without them. I don’t, for instance, leave home without them or walk city streets barefoot. Frankly, my feet are the easiest way to transport my shoes when I’m going from place to place, and so I do put them back on in those moments.
So, there you have it. We discussed my feet and how uncomfortable some people are with the fact that I so often do not have my shoes on. I have to admit that I find this point somewhat infuriating; not at the person who shared it with me, but in general. I was told that some people are able to “get past it,” while others seem to get stuck on the issue. (Interestingly, I’ve never heard so many comments about my bare feet as I did while attending the annual ‘International Society for Psychological and Social Approaches to Psychosis’(ISPS) conference in 2010. Every 10 steps or so, someone would comment. Make of that what you will!)
Here’s the thing I can’t quite figure out. Why on earth does it matter so very much? Why are people so concerned with the state of my feet? I’ve existed this way for decades now, and never once stepped on a rusty nail or piece of glass. I swear it!
The reality is some people actually react quite well to my shoelessness. It’s known throughout my community as a little ‘quirk’ of mine. Members of our deaf community have given me a deaf name that incorporates the letter ‘S’ with the sign for bare feet. Some people have told me how it puts them at ease. Although it would be a silly reason on its own to go shoeless, in some ways, I think it helps reduce the barrier and sense of power differential between me as ‘Director’ and others around me. Surely, I would be received differently and with more trepidation within our community if I came to work in the decidedly business-oriented attire donned by many of my critics.
In actuality, (and though this goes beyond the more straightforward shoe issue) the clothing that might alienate me most from my community is the clothing that would likely give me the best shot at being accepted by many in provider roles. How strange, given that some of those people in provider roles are the ones to entrust me with the funding to build this community in the first place.
But would I truly be accepted if I just changed my wardrobe, or suffered shoes throughout the day? I suspect not. I was wearing shoes, for example, when I testified in court (or, at least, in the small room on the locked unit of a local hospital that they were calling court for that day) at the request of someone in our community who was trying to avoid being committed longer-term. And after my shoe-laden testimony, which consisted primarily of my answering the judge’s questions about my direct experience with the person-to-be-committed, a complaint was lodged against me with our funder for misrepresenting myself as having ‘clinical’ expertise. Never mind that just a few years before I was being lauded for having clinical expertise. Never mind that I never claimed to be anyone but who I was in that moment. Never mind that the people who made the complaint weren’t in the room for the hearing, and that they were likely just upset that things didn’t go their way. Perhaps if I’d only gone shoeless on that day, the judge would have known not to take me seriously!
The truth is that when people are hell-bent on discrediting you, there is little you can do. What I actually say and do holds maddeningly little weight. I could spend all day attempting to please my critics, and still fail completely. Apparently, they want me to look and act credible, but not TOO credible… Not as credible as them, for example, because that’s an inconvenience, too. It seems worth nothing that although I’m referring to myself here, it’s not all about me. This is not a ‘Sera’ conspiracy, and I don’t mean to say that all people with whom I’ve had this experience or others similar to it are specifically after me. Rather, many of us – and particularly those of us working in peer roles or connected to alternatives in some way – are frequently being offered only conditional acceptance provided we step willingly into the “credible, but not too credible/controversial, but within strict limits” box and live there.
At times, it brings many of the same feelings of powerlessness that I experienced when I was stuck in the system in a very different way.
It’s in these moments when my energy feels so depleted and my ‘hopelessness’ meter is on high, that I can find the greatest sympathy for those who have entered this system fully intending to be change agents, but given that up in favor of a more peaceful existence.
It’s also in these moments when I am so strongly reminded of who still remains in control. We can talk about person-centeredness and valuing the wisdom offered by those who have ‘lived it’ all we want, but how much meaning does it really have when those supposedly valued people can so easily be silenced, ignored, or dismissed? Or when they have to fight, play games, and attempt to ‘pass’ according to the standards of those truly in power just for a few scraps of being heard? That I require at least some degree of acceptance in order to continue to exist in this role speaks to who holds the keys to the financial resources. As I’ve learned the hard way in the past, these are also the people who have the power to pull me from my job altogether.
That I need to be forgiven for taking my shoes off or raising controversial topics, rather than being in the position to forgive those who march disruptively into our communities in their unsettling, suited attire and often using unsettling language, says something important about who is still setting the rules. And yes, I know, these ‘rules’ get set in all corners of our society. It is not specific to the mental health system.
I recall early on in my relationship with my husband (when we were both quite young), arguing about the wisdom behind dressing up a bit for a job interview, or the reasonableness of certain restaurants setting dress code standards. For the record, my then-boyfriend was arguing that people should be able to wear what they want, whenever and wherever they want and expect to be judged for who they are, period. I, on the other hand, was the one arguing that “that’s just not the way the world works,” that certain jobs will have particular dress expectations and it’s best not to alienate them until you know what those expectations are, and that perhaps it’s okay for restaurants that seek to create a certain atmosphere to ask their guests to participate in that process.
I still pretty much believe that all to be true, and so I have to pause a moment and ask myself if I’m being inconsistent, hypocritical or just plain stubborn to the realities of the world. Perhaps a little bit on the last count, but I’d also argue that this is quite different than those other situations because one of the foundational elements of work I am doing and the community that I’ve been a part of creating is that it is not supposed to be on someone else’s terms. That’s kind of the whole point. We are creating communities, and spaces, and relationships, and learning opportunities based on the wisdom we have gained from our own experiences. In the environment that we have co-created, it’s not only okay to honor our own needs and preferences, to explore how to integrate our differences into lives that work for us, to regard what may get labeled as our peculiarities as adaptations and strengths, to talk about challenging topics, to reclaim our power to decide… it’s necessary. Sometimes, it is lifesaving.
In the end, while this could be read as a rather self-indulgent blog about my own sense of persecution and exhaustion, I guess what it truly is intended to be is recognition of how hard this work can be; how easy it can be to get to the point of feeling beaten down and wanting to give up; how very frustrating it is to accomplish so much and yet come to understand that it can mean so little in the eyes of some very powerful people. I suppose it’s also a call to action for others, because when some of us get this tired, others need to be on the ready to step up. And, eventually, if there is enough of us (and we are growing), the blows will shake us far less and who makes the rules and sets the standards will simply have to shift.
Here are the facts of the matter:
Personally, I am a (pretty good) wife and mother of two. I own a home, and just managed to pay off my car loan. (Yahoo!) I’ve sustained my job with the Western Mass Recovery Learning Community (RLC) for over six years, and held other jobs on the side. (Mystery Shopping, anyone?)
In my role with the RLC, I have been a part of building something that is pretty great. In six years, we’ve gone from one resource center and a handful of other offerings scattered throughout the area to four centers, a support line, a community bridging team, a peer respite, a young adult alliance, and trainings and events to please (or offend) all. We’ve hosted a variety of nationally and internationally recognized speakers including Dan Fisher, Will Hall, David Oaks, Ruta Mazelis, Daniel Mackler, Jacqui Dillon, Ron Coleman, Rich Shulman, Gail Hornstein, Robert Whitaker, Jacks McNamara, Sascha Altman DuBrul, and, of course, David Cohen.
Our community is deeply invested and engaged in some of the most exciting developments that have taken place in this country in recent years, including Hearing Voices trainings and groups and our Alternatives to Suicide work. Our trainings have attracted participants from as far away as Arizona and North Carolina. We’re about to start up a second round of our Alternative Perspectives Film Series, and we recently finished production on our own first full film, Beyond the Medical Model. We have impacted hundreds of people’s lives.
Our aim is not to tell people what ‘is,’ so much as to challenge the existing paradigm and shift it to one of not knowing, exploration, choice and freedom.
If your aim is to discredit us, you’ll probably succeed in some circles. However, we have also had a great deal of success, and will continue down our path.
Some of us, without shoes.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.