Caty's Story

This is a reprint of an excellent article posted on the Icarus project website, http://theicarusproject.net/ , which I found on the Bi POlar Guy's blog, http://bipolardaily.blogspot.com/ . I can't say enough good things about both of these so I will just get on with the article
Caty's Story
By: Caty Simon

I remember therapy—I remember the array of their tasteful, decorative little offices, all the little tchochkes that were supposed to demarcate the small variations among their bourgeois personalities. Were they a sensitive New Age therapist—was the office bedecked in fuchsia quilts and crystal and all those other oh-so-spiritual consumer products? Were they a neo-Freudian therapist, with that imposing bookshelf of fat leatherbounds in perfect unread condition—Father Daughter Incest was the unfortunate title always directly in my view in one worthy’s office with all the delightful mental images it called up. Were they the savior surrogate parent type, with all the testaments to that loving transference, ostentatious displays of the patients’ artwork slavishly dedicated to them all over the room? And the constants—the imposing therapist’s chair, more like a throne, really, from which they peered down at the little “manic depressive” teenaged me, the “client”, in my perch near some luxurious houseplant. This seating plan never varied no matter what breed of therapist I encountered in my career as a patient. I remember the walls covered with their various degrees and awards, seemingly just to emphasize the difference between the accomplished professional and the decompensating mental patient in their care. Later, during my academic theory days, nobody had to explain the concepts of “asymmetry” and “hierarchy” to me twice.

I remember my psychiatrist briskly beginning each appointment by asking me how my mood was. As if I was just a walking receptacle for my “mood”, some ineffable quality untouched by my decisions, my values, or any of the situations I found myself in. I remember my therapist, who was supposedly helping me emerge from my depression, chiding me about forgetting to take the very mood stabilizer which itself was the cause of the intractable depression I suffered throughout my late teens. I remember how all my therapists affirmed the death sentence given to me by the mental health industry and the mainstream culture which embraced it: that contrary to the real scientific facts on the issue which I would discover years later, my genetic makeup guaranteed that I would live with a “mental illness” which could not be cured until the day I died. You can imagine how helpful this prediction was to a depressive teenage girl’s self-esteem, but there it was. Of course, my illness could be treated—in fact, it was imperative that it was treated through expensive medication regimens brought to me by Big Pharma and paid for by my parents’ insurance, regardless of the damaging side effects I might and did experience or the actual proven effectiveness of the medications. (And speaking of tchochkes, I don’t think I really need to add to the chorus of voices crying foul about all those Prozac pens and Zyprexa notepads festooned about each shrink’s office and what all that product placement meant.)

Then, of course, there were the more insidious atrocities. The way therapy pathologized my politics—and I can’t even blame psychiatry for this like a good little member of the consumer/(ex)patient/survivor movement because the tradition my therapists followed by dismissing my “intellectual defenses” whenever I went off about how capitalism destroyed community (especially mine) and how the mental health industry was oppressive (especially to me.) This would earn maybe a small amount of attention until they tried to get back to what was really bothering me—as if it was inconceivable that that was what was really bothering me. I would think of a blurb in bold I’d read in a the local feminist journal, in an article critiquing therapy: “We can’t change the world—that’s a given, right—so what can we do to change you?” After all, my scathing critique of the society I lived in had very little place in an institution whose goal was to make me a more highly functioning member of society. Years later when I finally decided to expand on my leftist babble to the point of leaving the house and finally throwing myself into various human right’s movements, finding validation and community through my part in them and easing away from my depressive immobility, I still wondered why none of my therapists had ever encouraged me to put my proverbial money where my mouth was and do something about all my ideas. Doing something about all the things that depressed me seemed like such an intuitive way to combat my depression, after all. But I guess they liked it better when my money went in their direction. I guess they liked me better prone in their offices talking about my mother.

Ah, my mother. And my father too, while we’re at it. The real meat and potatoes of therapy, the developmental analysis. I could see each and every one of my therapists smack their lips when we really got down to talking about family and formative years, see how they would crow over every new insight about, say, what my mother used to say to me when I was a toddler. It was almost impossible to show them that there was a crucial step between self-knowledge and self-control—and that all important self-knowledge would not stem from looking back at that grisly family milieu. I myself, for example, was “traumatized” more by the slings and arrows of early middle school, but how could you tell a shrink that? And I just kept waiting for when one of my shrinks would tell me what to do with all this knowledge, how I could get better. If we spent half as much time talking about that, about what I wanted to talk about, I might have emerged from my teenaged morass years earlier.

It’s not that all my therapists were bad people—a couple gave me some valuable insights along the way. One woman I saw for some time, during the worst of my medication induced depression, when I basically spent my senior year of high school in bed, gave me one of the few bits of hope that actually pierced through my haze of utter hopelessness. You see, despite the years of psychiatrization I had undergone at that point, despite everything everyone and everything around me was telling me, I still suspected that all this “mental illness” stuff was a farce. But in my depressive self-hatred, I blamed my long stasis on an intrinsic character defect—on my laziness. When I shared my thinking with this therapist, she told me quite simply that she didn’t believe in laziness. In her experience, people always had good reasons for periods of inactivity, or even for “low achievement” throughout their lives. Later, I would realize that I did have quite a few good reasons for my bedridden season, and that in fact it was all a very understandable emotional response to many things that were happening at the time. But at the time, this woman was kind enough to help me stop holding myself in contempt. She was also the one that helped me see what a sexist crock of shit the diagnosis of “borderline personality disorder” was. She pointed out that 90% of the people diagnosed with the disorder were women, and that something like 80-90% of them had suffered some form of abuse. Yet, the correlation between the abuse and the behaviors described in the diagnosis was not mentioned in the DSM-IV—why wasn’t borderline personality disorder redefined as another variant of post traumatic stress disorder, rather than pinning the behavior on something intrinsically wrong with the abused women who displayed them? She went on to show me how the symptoms were basically an illustration of male disgust with extreme examples of normal female socialization. Thanks to her, I was able to reject this elaborate insult in the form of a diagnosis handed to me by the psychiatric system. Nowadays I jokingly refer to it as a description of the doctor’s worst stalker ex-girlfriend.

The thing is, none of these good individuals mattered one bit when they were working within an oppressive system. None of these people, even the best of them, helped me get better, ultimately, b/c not only did therapy undermine me in the myriad ways listed above, it was simply ineffective. What I needed was a community of concerned, socially active people to become engaged with and learn how to relate to, whereas therapy locked me in a room with one bourgeois professional with whom I had a totally artificial relationship—how many relationships outside the therapeutic sphere are so one sided?—who wanted me to become more socially adjusted.

So I gave up on therapy. But for a great many years, it was obvious to me that I would have to improve upon it somehow. No matter how much “work” I did on my own to curb my emotional extremes, it just wasn’t effective enough. I knew that if therapy was actually capable of what it set out to do it would be just the treatment for me, so what sort of thing would succeed where therapy failed? At the same time, I felt drawn to do political work around the human rights abuses I myself had witnessed occurring within the mental health system. It was weird, it seemed that everyone I found in my new leftist friendship circles agreed with me about everything except that one issue. When it came to mental health, they were as mainstream as could be, selling their Aderall prescriptions all over campus when they weren’t sped up on them themselves, informing me solemnly that they had XYZ disorder. I wandered around for a while trying to find the seemingly mythical set of radicals who would politicize the issue of mental health with me. In my quest, I even called NAMI.

NAMI, the National Alliance for the Mentally Ill. I wasn’t aware at the time that this self-proclaimed “grassroots” organization for “friends and family” of those who suffered from “mental illness” was in fact, a front for funds filtered in by the pharmaceutical industry. And the way they “battled stigma”, as they professed in their mission statement, was by convincing all those diagnosed to take pharmaceutical company products and show the world what good little boys and girls we could be. Those critical of mainstream psychiatry don’t have one unified theory of where the different states of emotional extremes labeled “mental illness” “come from” but one phenomenon we’ve noticed is that survivors of trauma and abuse often play out their trauma in strange ways later in their lives. A sad fact is that many of the families involved with NAMI are abusive families, and it’s convenient for them in their denial to ally themselves with a group that ascribes their relative’s problems to a biochemical glitch treatable with pharmaceuticals. So, while NAMI benefits Big Pharma and confused, ignorant and/or abusive family members and friends, they are certainly not “for” the mentally ill, as their moniker claims. Innocent of all this, and eager to do work on the issue, I called them. I told a very skeptical woman about how I was against taking meds personally, and I didn’t see “mental illness” the way the general public seemed to see it…Finally, she said—after telling me again what I’d heard many times before, as if it was creed, that bipolar disorder just couldn’t be managed without medication, whereas I felt like I’d only just started to manage my life once I stopped taking medication—-“You’d like one of our other office members. She likes to say that mental illness is no more pathogenic than pregnancy. But you know, I’ve given birth, and I’ve had a son go psychotic, and it’s simply not the same.” Click

This whole story is really just to illustrate the political setting in Western Massachusetts (and most of the country) around this issue at the time. When Oryx Cohen and Will Hall met and co-founded the Freedom Center four or five years ago, there simply were no grassroots organizations in Western Massachusetts by and for those diagnosed with mental illness to go to for support, advocate for themselves, and politically empower themselves. In fact, throughout the entire country, there was a vacuum. There was Mindfreedom, but it was a national coalition, not much help to someone psychiatrized and politically enraged in Amherst, MA. There were more progressive treatment centers. But for someone done with being “in treatment”, and ready to create some political hell and speak up for the rights of those diagnosed, there was nothing.

There certainly wasn’t anything for me until I ran into the Freedom Center. For years, I’d lectured to my anarcha-kid friends about how psychiatry too could be a system of oppression, but mostly what I’d gotten in return had been blank stares. I lugged around books like The Myth of Mental Illness by Thomas Szasz and Erving Goffman’s Asylums, and Persimmon Blackridge’s incredible book, Prozac Highway, about the trials and troubles of a depressed lesbian performance artist/cleaning lady and the girl committed to a half-way house whom she met over a consumer/(ex)patient/survivor movement listserv made me aware that a movement at least existed somewhere. But without a movement behind me, I was just regarded as a girl who’d taken one of the weird postmodern rites of passage for odd kids too hard. Why didn’t I just shut up and revel in all of this free candy like everyone else? And what about some of my dearest friends, who swore that they could never function without their pills? They were hurt by extremist screeds like the Adbuster issue that basically stated that everyone should stop taking meds immediately b/c they were a capitalist plot, and that we could all just take in the therapeutic effects of fighting the Man instead. And I just couldn’t take myself seriously enough if the most cohesive ideology I could offer them was just a variation on that theme.

Finally, my story comes to the anarchist fair in the Amherst town green on Labor Day, 2003. I drove in from down the road in Northampton, with girlfriend and co-speakers in tow to speak representing a multi issue low income rights group on sex workers’ rights. (Maybe this is the point in the narrative where I should acknowledge that, duh, I live within a very specific and insulated subculture a lot of the time…) After my speech we started idly milling around the literature tables. There was the usual union and commie fare, and I picked up and skimmed through a lot of it. Then I noticed a really unusually untrendy looking person monitoring one of the tables—a perky looking girl in an eighties looking black and gold mohawk and t-shirt that warned me not to annoy the unmedicated person. Then I noticed that the shirt wasn’t just a novelty item—the sign on the booth said—“The Freedom Center—an organization by and for those labeled with mental illnesses.” I noticed the crucial use of the word “labeled”, but I still couldn’t entirely believe what I was seeing.

So I asked the person next to the girl, another standout from the punk crowd, a round smiling man with a white beard in short shorts—he looked kinda like an ex-mental patient May Day Santa Claus—“You know, I’m looking for an organization for ex mental patients that isn’t pro-medication…”

“You’ve found us,” he said, beaming down at me.

“But you know,” I stammered, “I’m also looking for an organization that isn’t anti-med, that doesn’t make people ashamed of taking their drugs, cuz, you know, personally I decided to stop taking medication myself but a lot of my friends still swear by them and I don’t necessarily disagree with them…”

“You’ve found us,” he repeated, still grinning in his weirdly beatific way.

I took a flyer, saw that the meetings were in downtown Northampton where I lived, and a month later I went to my first Freedom Center support meeting.

I was lucky enough to have found what I was looking for, and I’ve stayed with the Freedom Center for the past two years as an active organizer. I speak at workshops and colleges, organize and participate in events and protests, and perform a variety of other functions to promote education and activism around these issues. I agree with—and in fact, am wildly vehement about—every single component of the Freedom Center mission statement, which runs something like this (off the copy on our website): Freedom Center is the area’s only group run by and for people labeled with severe ‘mental illnesses.’ We call for compassion, human rights, self-determination, and holistic alternatives. We stand against the mental health system’s widespread despair, abuse, fraudulent science and dangerous treatments. Our goals are to end all force and coercion, including involuntary treatment and forced drugging; to ensure that all treatment decisions are based on true informed consent; to support effective alternatives to toxic psychiatric drugs such as nutrition, exercise, and holistic health care; to promote voluntary, non-paternalistic social supports such as peer-run programs, housing, and therapy; to expose psychiatric and the pharmaceutical industry myths, propaganda, and corruption; to make true client control and empowerment the center of all mental health services; to defend our human rights; and to end fear and misunderstanding of “madness” and extreme states of consciousness.

But despite how excited I am about how we’ve politicized “crazy” people’s rights in general, I think we’ve really achieved the most through our support group. Its’ peer run model is everything therapy isn’t.

One can’t say enough about what a difference it makes to work through one’s problems among peers rather than trying to solve them within a hierarchical model. And this isn’t just about some idealistic notion of equality, either. How is one expected to become a mature, self-determining and mentally healthy person when every week one assumes a dependent position before some secular father confessor figure? In our support groups, we try to help people make their own decisions based on their own values rather than judging them according to an APA approved notion of what is “adjusted”, “functional”, and “mentally healthy.” These standards can literally terrorize people.

A year ago, a young college student came to our group struggling to escape an abusive relationship. We emotionally supported her through many weeks of terror, and finally helped her talk to her college administration about securing emergency housing. Now, a year later, she is one of our most accomplished activists, representing us in our alliance with local domestic violence shelters and rape crisis centers in working to build better access to these services for trauma survivors diagnosed with mental illness. When she is asked why she chose to come to the Freedom Center for help rather than a domestic violence shelter or other more traditional services, she says that she was afraid of being committed or thrown out of the shelter because of her cutting. And, “who were they going to believe—the hysterical young girl crying and cutting herself with a kitchen knife or the calm, forty year old man who claimed that she was crazy?”

(Chesler’s Women and Madness makes an important point when it illustrates how women bear the brunt of the damage that these standards of mental health can do. The norm for mental health is male, as most cultural norms are, so women are caught in a Catch 22—act according to the way women are socialized to respond to stressful situations, for example, being emotionally expressive, i.e. “hysterical”, and you’re judged as crazy. But act according to male socialization and you’re gender transgressive and therefore, crazy.)

At the FC support groups, we honored her cutting as a coping mechanism she was using to get through an extremely difficult situation—she told us how the cutting left a tangible mark of her pain that she could see so that she could remember that the abuse was occurring, despite her abuser’s denial. We also suggested other, less damaging coping mechanisms that she could use when she was ready to move on to them. We didn’t fly off the handle and become overly interventionist, thus making her feel even more powerless in a situation which was already radically disempowering her. Because she was in no danger of being “reported” and committed for her behavior, as she would have been in mainstream therapy which mandates therapists to report self-damaging behavior, she actually felt safe enough to talk about her problems. (This is what makes so many people feel safe enough to come to us for aid when they can’t have access to the help they need in a mainstream therapeutic setting for fear of being reported and imprisoned.) Furthermore, she was in no danger of being diagnosed, which allowed her to feel safe from the more insidious threat of the damage done to someone’s identity when they are defined as crazy. Because some of us had been cutters, we did not judge her from a supposedly superior position, as a therapist probably would have. We let her recover at her own pace. we let her control her own recovery, treating her as our equal—and that made her recovery possible.

Personally, though, what made me feel safest in our support groups is that the irrelevant specters of Mommy and Daddy were kept back in my childhood where they belonged when I took time to share my feelings. The support group is non-directive, allowing each person to focus on what they want to focus on. It’s amazing how much more you can feel like a self-actualizing, adult human being when you’re actually allowed the privilege of deciding what’s important—-in terms of your problems, your life, and your self. What made me feel even better is that, in contrast to the way I was presented to myself in my psychiatrist’s office, I was no longer a mood disorder on legs at the Freedom Center support group. That is, I was not a little container of crazy spreading chaos wherever I went, no matter what my situation was. People in the support group actually considered the possibility that, just like a “normal” person, I was affected by my surroundings, for better or for worse. My bad mood didn’t have to be my “bipolar disorder”—it was probably just the fight with my lover I had that day, or the fact that I was a queer first generation sex worker, or because I’d missed my bus . Being treated as if one has a rational reason behind one’s responses also does wonders for one’s sense of oneself as a person rather than a mental patient.

At the Freedom Center, we’re agnostics about the cause of the emotional extremes that the mental health industry calls “mental illness”. We do offer people information and literature about the fact that there is no sound scientific evidence proving that “mental illness” is caused by an innate, inherited chemical imbalance in the brain, so they can dispense with that model if it isn’t helpful to them. (For example, despite what Big Pharma would like you to believe, depressed people do not as a group absorb less serotonin than the general population—in fact, some absorb more, some absorb less, and some absorb a “normal” amount.) The only things that have been proven to cause chemical imbalances in the brain are the psychiatric drugs prescribed to treat these supposed chemical imbalances. At the support group, we give people enough respect to allow them to be the final authority on the “cause” of their problems—some trace their disturbance back to traumatic events in their lives, some to spiritual impoverishment, some to nutritional deficiencies, and some to isolation. Some people feel that they have no problems besides the ones foisted upon them by a mental health system in which they have been deeply misunderstood. After all, the people who are most likely to be labeled with “mental illness” are members of marginalized groups—poor people, people of color, and women. We also fully support people if they are firm believers in the biochemical model of mental illness, if that’s the model that helps them live the lives they want to lead best. By acknowledging that people are experts when it comes to their own selves, we create an environment in which people are best able to help themselves progress towards recovery, using the means they feel work best for them—whether that’s holistic healthcare, participation in community, making an effort to self-actualize and more fully live out their dreams, working through the trauma in their past, or even taking psychiatric medication.

Many people simplistically understand us as an “anti-meds” group, when that’s simply not the case. What we’re really after is true informed consent—an ideal that’s on the books in the mental health system, but is seldom truly realized there. So many of the effects of medication have been obfuscated by psychiatry and the pharmaceutical industry that patients simply can’t make informed decisions about matters that are crucial to their health. (For example, Eli Lilly even went so far as to cover up the facts about akathesia, a side effect of Prozac involving such extreme discomfort in one’s own skin that it leads to intense suicidal and/or homicidal feelings. This side effect caused quite a few deaths. Lilly knew about akathesia very early in the drug’s development in the late eighties, but it is only now that the public is really hearing about it.) The real facts about the drugs—that they’re far less effective and far more dangerous than the mental health industry makes out—are just not accessible to the people to whom they are prescribed. Often, this leads to tragic results. In our own support group, we are helping a residential program client file a suit against her care provider. She had been over prescribed so many drugs at such high dosages to such an extent that she was weak, severely ill, and extremely disoriented all the time. When she tried to tell the staff at her program about it, they did not respond. Because she was so dazed and over drugged, she ended up falling down a flight of stairs and breaking her leg in several different places. Another young girl at our support group developed a mild form of diabetes caused by the anti-psychotic drug she was taking. And these are only two of the many drug horror stories we’ve heard at the support group.

By providing literature on drug effects and sharing anecdotal information about our own experience with various drugs, we help members of our support group make truly informed decisions. If they want to get off their drugs, we help them taper off in a slow, safe manner. (Unfortunately, few doctors are willing to help people get off the drugs they prescribed for them. Yet another problem with mainstream therapy is that psychologists and especially psychiatrists harbor such mixed loyalties, sometimes more concerned about furthering the interests of the drug companies that fund them than their own patients. Without guidance, people often choose to go the dangerous “cold turkey” route. The effects of sudden psychiatric drug withdrawal often resemble psychosis or mood disturbance, and the doctors use this as “proof” that the patient has an incurable chemical imbalance that must be treated with the pharmaceutical industry’s drugs indefinitely.) If they want to stay on their drugs, we provide them with as many real facts about their effects as we have at our disposal. About half the members of our support group take drugs, and the other half do not, and we respect both decisions equally. Ultimately, being given information by people who’ve actually taken the drugs rather than doctors who would never deign to sample what they dispense so freely makes a world of difference.

One more unique service we can offer each other as people who have been there are tips on how to navigate a system that sometimes abuses our rights, and is often daunting and unfriendly at the very least. Just existing as the radically collaborative and decentralized alternative support system which we are can be helpful to people who must face down the rigidly hierarchical world of mental hospitals and psychiatry. Being in community is one more thing we can offer a population that’s often characterized by its isolation. We agree with mainstream psychiatry in that we believe that those diagnosed with “mental illness” often suffer from loneliness and alienation and would do well to be embraced by a supportive community. Yet, the mental health system’s solution to this problem is feeble at best. While therapy claims to be a means through which isolated people can practice relating within a safe space, in reality all it does is set up an artificial, dependent relationship. Nobody ever interacts with other members of a community in the way in which it is appropriate to relate to a therapist: in a relationship which is totally one sided in terms of emotional disclosure, a relationship which is oddly formalized, a relationship which encourages inappropriate outbursts by claiming that one of its participants will not emotionally involve themselves personally (as if such a thing were even possible), a relationship which sometimes even encourages a regressive dependency called “transference” as a step towards healing.

Members of the Freedom Center support group see each other every week. Every week, we listen to each other’s problems, offer support, humor, and advice. We do each other little favors the way every interdependent community does, helping with rides and gas money and stepping in during emergencies, “psychiatric” or otherwise. During the week we worry about one another, we e-mail and call one another, politically collaborate with each other and even go to movies and activist events together. We celebrate each other’s successes and mourn each other’s losses. In this way, people labeled with severe “mental illnesses” who are used to nothing but isolation get to experience what being a part of a vibrant, living community is like—that is, what being truly cared about is like. One young man comes to our group every week and speaks in obscure, pedantic tones about how angry he is with absolutely everything. Every time someone attempts to respond to him, he disagrees with them vehemently and incomprehensibly. It’s hard to see immediately what exactly he’s getting out of the experience. But I think that despite his seeming disaffection, he comes to the one place where his anger will be accepted rather than diagnosed away, the one place he’ll be listened to and people will try to understand him—-the one place he can, paradoxically enough, be alienated among friends.

Finally, in stark contrast to the shrinks who condescended to my teenaged political idealism, the Freedom Center does “crazy” people the biggest favor of all by acknowledging that they can give help as well as receive it. By inviting all support group members to participate in our activist campaigns if they have a mind to do so we remind people who may have spent years internalizing the message that they are hopeless invalids that in fact, they are competent enough to have a part in changing the world if they so choose. In a sense, I think we have more hope for the recovery of “mental patients” than the mental health industry does. Mainstream therapy’s highest hope for the “cured” mental patient is that he or she is once again able to conform to the society which cast him/her out. We believe that (ex)mental patients are a group of people who have the creativity and dynamism necessary to change that society.

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