In 12th-century China, an odd form of willful self-torture gained ascendance: the foot binding of girls and women. For almost ten centuries, mothers willingly broke their children’s toes, bent the foot double and bound it with a strap. The result: a miniature foot that was the only way for a subjugated gender to marry into power.
Today we can look back and understand why the women of ancient China mutilated their feet to try and obtain respect in an oppressive, male-dominated culture. Foot binding was just one of many social conventions utilized to increase a person’s status. But in contemporary U.S. culture, people who intentionally hurt their bodies are not extended the same understanding — rather than being considered “elite,” we are called “insane.” We may starve ourselves or carve ourselves, taking to the extreme culturally-embedded norms like thinness in an effort to fight against marginalization or cope with internalized shame. But instead of obtaining the voice or place in society we yearn for, we are further ostracized.
Susan Bordo has called the body a surface on which the rules, hierarchies, and metaphysical ideals of a culture are inscribed: bodies are a direct “locus of social control.1” For people who grapple with emotions, personalities, thoughts, and ways of being which fall outside the range of what’s considered “normal” in Western society, the struggle to be viewed as citizens deserving of an equal voice and rights can sometimes play out on our bodies, without us quite realizing it.
For me, this ongoing struggle has played out most visibly in starvation and, more intermittently, self-harm.
Psychiatry likes to use medical discourse to turn emotional and existential pain into pathology, branding differentness as “biologically-based mental illness.” As a result I’ve been slapped with a variety of DSM labels over the years, such as “anorexic,” “major depressive” and “treatment-resistant.” However, as feminist and constructivist social psychologists have noted, ruling classes often pathologize or criminalize individuals who are different because our nonconforming behaviors threaten these groups’ powers. Branding non-conformers as “crazy” is often a handy way to obscure the dominant ideology and status quo that ruling classes are trying to protect.2
A recent incidence of self-harm brought into sharp focus how, since acquiring the “master status” of “severely mentally ill” over a decade ago, I’ve turned even more to my body to try and cope with the lost opportunities and status that the erasure of my former, “normal” identity has wrought. Subconsciously, I started allowing mental health labels — and thus dominant groups’ oppression — to take control of my life and my narrative, never realizing I had a choice in the matter. As a person who’s always placed primacy on being an active, contributing and self-sufficient member of society, the seeming loss of agency over my life has brought excruciating existential pain.
The story I’m about to tell, which occurred about a month ago, is about how an act of self-harm I originally perceived as a strident shout that “I’m still here, and I’m still worth listening to,” was anything but. It’s a story of how I came to realize that in trying to be heard — and deal with my emotions — by continually abusing my body, I become an unwitting collaborator in my oppression.
By turning to a healthy outlet (this page) I stumbled upon epiphanies: the parallels between self-harm and anorexia and how, if I continue to resort to these forms of “speaking,” I will continue to be complicit in my own subjugation, just as a millennium’s worth of Chinese women were when they willfully and painfully mutilated their feet to obtain a “status” that was entirely illusory.
* * * * *
First, a little context:
For most of my adolescence and early adulthood, my “anorexia” was fairly mild and existed on the fringe of my life; it waxed and waned, serving mostly as a tool of emotion regulation for a person who struggled with intense emotions, low self-esteem, a more popular twin sister, an artistic bent and a seeming inability to ever quite meet society’s criteria of “normal” or “success.” The eating disorder was also linked to my former career as a competitive long-distance runner. In the two latter senses, then, anorexia was the social currency that allowed a girl who could never fit in to “succeed.”
In 2004, while working as a reporter at a small newspaper in Oregon, I entered a treatment center in a proactive attempt to prevent what was becoming more of a problem from spiraling out of control and derailing my life.
That decision turned out to be the biggest mistake of my life.
The dehumanizing, infantilizing, and shaming treatment I endured, combined with the multiple DSM labels permanently emblazoned on my chest — scarlet letters announcing to the world my depravity — ignited a decade of cycling in and out of treatment programs where my identity was increasingly reduced to a walking knot of pathology. Back then, I didn’t question the labels; I didn’t know that the doctors and family members who kept telling me I should enter inpatient care might be wrong. I didn’t realize that the way I was being treated for 12 years was what was making me sicker each time I got out.
My anorexia now serves a function quite different than it did originally (as does my occasional self-harm, which did not begin until I was in treatment). It is now more an expression of the self-hate and shame I harbor as a marginalized, worthless member of society: an unemployed, chronically “mentally ill” person who seems not only a failure at life in every conceivable way, but a heavy burden to her family. When engaging in self-harm, it, like my anorexia, is my way of saying I not only feel undeserving of life and nourishment, but that I feel very deserving of punishment.
Yet simultaneously, my anorexia and self-harm are also subconscious attempts to be seen and heard — in a society which no longer recognizes me as a valued citizen — by shouting, through my body, “Listen to me, because I am not ok.” The two behaviors intersect in that they both express a futile attempt to exert agency over my life in a world where I am consigned to a marginalized minority group. And, embarrassingly, within the anorexia still lingers vestiges of a superficial attempt to be “successful” in at least one remaining way: by being “thin.”
It came as somewhat of a shock when I found myself engaging in a prolonged and rather extreme act of self-harm one recent Friday night, as it was the first time this behavior had occurred in two years. In retrospect, I realize the feelings that led to it had been building for months. They took root when I was denied a speaking opportunity at a major eating disorder conference in May, and were exacerbated after I started publishing a series of investigative articles about the eating disorder “treatment-industrial-complex” on my website. While thousands read the stories, and hundreds of former patients thanked me for raising the curtain on this issue, the treatment industry itself – and the advocacy organizations which fund them – returned my meticulously-researched stories with silence. No major news outlets picked up the story; no public health or regulatory agencies voiced concern; no legislators responded to my calls for reform.
Combine the returning feelings of disempowerment with extreme financial stress and sleep deprivation and I was near my breaking point. But what really sent me over the edge, that Friday, came from a “friend.” A long-time, “socially progressive” friend who considers himself a champion of social injustices, and who wrote to me about the frustration I’d expressed that many people close to me weren’t reading stories I’d poured my heart into.
My (now former) friend said I can’t expect people to be interested in writing of such a routinely “dark” nature. In a day and age where the media reports hourly on stories of human suffering, I can’t expect people to be eager to read more of such “harsh truths.” He then went on to list a litany of evils the media bombards us with — things like ethnic cleansing in Darfur, and the plight of children in war-torn Syria. Thus implying that 1) my struggles pale in comparison, and 2) the fact that he “cares” so much about these social injustices absolved him from lifting a finger to help redress the social injustice experienced by someone he actually knows. He then slipped complacently back into his white, upper-middle-class and privileged life to enjoy a Friday evening with his wife and two children, inside his expensive home.
I, on the other hand, spent my night beating, burning and starving myself. I did this for hours as I sobbed — in howls befitting the depraved being I felt this man and the general public think I am — in a closet I had locked myself into, trying desperately to find some way to express the unbearable emotional pain and existential meaningless I’d allowed my friend’s words to engulf me in.
When I woke up Saturday morning, those emotions had begun to transmute into anger. I spent the rest of the day composing a carefully constructed rant, which I posted on my website along with two photos of the bruises and burns I incurred. For an entire feverish day I tried to write my way out of the pit of shame, self-hate and hopelessness I had let my friend’s remarks send me plummeting into.
The post (which I later took down, and kept hidden from my friend) admonished him for denying my right to have my experience as an oppressed, “mentally ill” individual heard, pointing out the hypocrisy of supporting other civil rights movements but not supporting mine. Make no mistake, I am enormously inspired to see the gains being made in the U.S. today by movements such as #BlackLivesMatter or the fight for transgender acceptance, and I truly admire the movements’ leaders. But, I asked in my initial blog post, how is raising awareness about the way in which society treats people like me any less deserving of notice than the “dark” and “harsh” truth of how other minorities are living and dying?
I explained that, through my stories, I was narrating an equally legitimate tale of oppression and, moreover, that giving voice to this tale is the only thing keeping me alive.
“We are the true lepers of this country, America’s ‘untouchables,’” I wrote. “All I want is merely the opportunity to have the same things you take for granted. I want to be considered just as legitimate a citizen as you are, instead of the 3/5 of a human being I’m pretty much considered today.”
I asked my friend to consider whether he is “Sanist,” so to speak — someone who tolerates every form of human diversity except diversity of the human mind. I believe this is what most of the U.S. population is today: unapologetic Sanists. And the worst part is most people don’t even know they harbor this prejudice.
Foucault, who influenced Bordo, states that society’s ruling classes do not maintain power by wielding it from above, but instead through the subtle practices of daily life which regulate our construction of space, time, desire and embodiment. “There is no need for arms, physical violence, material constraints,” Foucault said. “Just a gaze. An inspecting gaze. A gaze which each individual, under its weight, will end by interiorizing to the point that he is his own overseer, each individual thus exercising this surveillance over, and against, himself.3”
I think it is valid for me and others to talk about the oppression we experience as members of an invisible minority group, and to ask our friends and colleagues to examine whether they — however innocently and unintentionally — might harbor subconscious attitudes toward the “mentally ill” which play into our stigmatization. Because I think it is fact that we live with the only form of prejudice that is completely sanctioned, and never questioned, by nearly every sector of American society.
I think it’s critical to ask people to consider this form of unintentional prejudice, because the ways in which people act (or fail to act) as a result can make them complicit in our oppression. And unless unfounded beliefs about the “mentally ill” change, people like me will never have the privilege of reaping the opportunities that “normal” citizens do. It’s also important because the denied opportunities the “different-minded” are forced to live with can exacerbate the painful aspects of our interior experiences (depression, for example), resulting in reliance on unhealthy but seemingly necessary coping mechanisms — or in worst-case scenarios, even suicide.
Many of us “mentally ill” individuals eventually realize that people of all political persuasions often have a narrow, binocular vision — an unconscious shudder response — with us, because when we speak and act in ways that run counter to conventional norms, it scares them. It’s scary because it challenges not only the status quo but the values by which most of the Western world defines itself. Therefore much of the Western world automatically mutes and marginalizes us — branding us with diagnoses, locking us up in prisons or psych wards, increasingly limiting our rights — in order to shield ideologies they prefer to leave unexamined.
I believe, as Aldous Huxley once wrote, that it is society that is “profoundly abnormal,” not us, and that it is an extreme form of injustice to reduce the psychologically different to pathologized beings who are considered unfit to fully participate in the most powerful sectors of American life, including employment and politics.
But it wasn’t until I started writing this piece that I realized I have to own up to my own complicity in my oppression as well.
I originally posted the photos of self-harm because I wanted the world to gaze upon a visible symbol of the invisible pain and self-loathing I experience as a member of a disenfranchised minority group. But I have since come to realize it was not the outlet of self-harm or its visible results that enabled me to climb out of my pit of self-loathing, much less find an audience receptive to discussing “Sanism.” It was writing about my anger and oppression that provided the first, tentative steps toward renewed emotional stability as well as liberation from my internalized and externally-imposed prejudice.
Perhaps, back when I was trapped in the eating disorder treatment system and living in a highly-controlled, emotionally abusive environment, self-harm was at that time a regretful but necessary behavior that allowed me to hold onto some shred of my former self, fight against my oppressor, and affirm my right to define myself and be heard, through the only means that seemed available.
But I live in a more free environment today. Things have changed.
Now that I am outside that treatment system, when I intentionally hurt myself — whether it’s through self-harm or anorexia — I become an unwitting collaborator in my oppression. In effect I affirm, by such acts, society’s ostracizing of me. I let the powerful people who say I’m “less-than” win; through such behaviors I agree with them, even if I don’t realize it at the time. Most people who’ve engaged in anorexia know that it can produce feelings of being in control; the excessive restriction feels like an act of power and self-mastery, because you are demonstrating a degree of willpower few can sustain. One often feels, as Bordo aptly captured it, “untouchable, invulnerable, liberated.” But she also wrote, “to feel autonomous and free while harnessing body and soul to an obsessive body-practice is to serve, not transform, a social order that limits [our] possibilities.”
When the different-minded express our marginalization by resorting to anorexia, self-harm, substance abuse or other hurtful behaviors (“pathology as embodied protest,” as Bordo puts it), these behaviors undermine the goal by rendering our bodies fragile, weak and abused. An unwillingness to express oneself directly through words, or civil protest, results in an “inchoate, counterproductive protest” — the attempt to be seen ironically results in producing a body (and agenda) that is increasingly un-seeable.
Bordo emphasized that power is “constitutive” — it requires voluntary participation by both subordinator and subordinated to maintain. Power, she wrote, is not merely possessed by one group and leveled at another; inequality remains entrenched only in so far as the disenfranchised voluntarily buy-in to society’s normative practices and thus, our subjugation.
So I now realize I have a responsibility to take steps to empower myself, and to no longer be complicit in my oppression: to start, by taking steps to end my self-harming behaviors. And to stop “buying in” to the messages that those who hold prejudice toward the mentally ill direct toward us — not letting them fuel my self-hate and hopelessness.
Those of us who have extricated ourselves from traditional psychiatry can now choose which labels we want to be called by, can write our own identities, and — perhaps most importantly — we can choose how to be heard and how to fight for our civil rights. In other words, we can choose to do so in ways that are self-affirming and healthy, rather than self-abusing, as that will help not only ourselves but will far more effectively advance the fight for civil rights.
One healthy way to fight and move beyond oppression is to re-write the “master narratives” that Western psychiatry (and society) have tried to impose on us. In Beyond Anorexia, Catherine Garrett demonstrated — based on a qualitative study of more than 30 women in recovery from the disorder – how re-storying can be a powerful way to resist the dominant narratives traditionally used to reduce us to a bunch of diagnostic codes.4
Most of the women in Garrett’s study achieved recovery because they created new narratives to make sense of their personal history, current inner life, and the world at large – narratives which represented their lived experience rather than the deficits psychiatry told them they possessed, and narratives which drew on the great myths of humankind. These women “developed their own healing methods to recreate what was destroyed by trauma. Traumas resulted from oppressions of class, race and homophobia; so it took political, economic and social solutions to make recovery possible. Narrative helped participants place their experience in a wider framework.”
In a world still dominated by Sanists but where alternative paradigms of “mental illness” are nonetheless gaining slow, but increasing, acceptance — particularly in forums such as Mad in America — we all have the opportunity to re-write ourselves, to resist our oppression in healthy ways. And that is what I am attempting to start doing now, as I inscribe, here, symbols on a page, instead of carving them on my body.
And I call, just as urgently, on those of us who identify positively as “Mad,” ex-patients, psychiatric survivors, ex-inmates, or other similar terms, to unify in a more cohesive fight for civil rights. Like the anti-psychiatry, Mad liberation and disability rights movements of the 1970’s, we should follow in the footsteps of pioneering activists like Judi Chamberlin, Leonard Roy Frank, Howie the Harp, and Eleanor Riese, take to the streets, raise our voices and fists, and demand the “normal”-minded afford us the same opportunities and rights they afford themselves.
As Patrick Corrigan, who helped found the National Consortium on Stigma and Empowerment, wrote at the conclusion of a 2005 book, invoking Dr. Martin Luther King, Jr.’s “I Have a Dream” speech:
“Some readers might blanch at using Dr. King’s noble verse to make sense of the vision needed to overcome mental illness stigma. But for many advocates, the prejudice related to psychiatric illness is no less insidious or heinous… I dream of a time when people are judged by the merit of their character, not by the diagnosis in their chart or the symptoms with which they struggle.5”
* * * * *
1Bordo, S (1994). Unbearable Weight: Feminism, Western Culture, and the Body. Berkeley and Los Angeles: University of California Press.
2Brown, L. and Ballou, M. (1992). Personality and Psychopathology: Feminist Reappraisals. New York: The Guilford Press.
3As quoted in Bordo (1994).
4Garrett, C. (1998). Beyond Anorexia: Narrative, Spirituality and Recovery. Cambridge, U.K.: Cambridge University Press.
5Corrigan, P. (2005). Mental illness stigma as social injustice: Yet another dream to be achieved. In P. Corrigan (Ed.), On the stigma of mental illness (pp. 315-320). Washington, DC: American Psychological Association.
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.
Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.
Thanks for a very powerful recounting of your experience and your movement toward creating a new narrative! I think choosing our own descriptors and reclaiming our right to tell our own stories is central to any real healing. I also love the focus on society as the ill party who needs the real healing, because that’s what I see as well.
A couple of thoughts struck me during my reading. The first: do you think that most of those “normal” people that you and I both strove to be like are really “normal?” Or are they also suffering the same kind of oppression but have better ability to deny and repress their discontent and internal sense of rage? I really don’t know the answer to that question, but I am inclined to think that there are very few among our fellow citizens who really feel free to be who they are in this oppressive society.
I also noticed that you did not mention children among oppressed and invisible groups. I would submit that the oppression of children is almost completely sanctioned by society at large and lies at the base of many of society’s other maladies. A look at a typical school classroom supports this view: children herded together in age-specific groups with no choice of either where they go or with whom they care to associate. Teacher gives orders that children are expected to follow without question, regardless of their sense or offensiveness. Children who resist or rebel in any way are punished, or increasingly, labeled and drugged until they submit. Parents who object are marginalized in similar ways, either by shaming or patronizing behavior or by fear-mongering regarding the dangers of allowing the child’s “disease” to go “untreated.” Children have almost zero recourse when abused, neglected, or otherwise mistreated, with certain very limited exceptions, and even those are often overlooked or minimized when reported. And that doesn’t even get into the much larger area of parents’ ability to emotionally and even physically abuse their own children with impunity. I’d be interested in whether you agree with this assessment, and how you see it fitting into your analysis of later life as a “mentally ill”-labeled person.
Bottom line, I see “mental illness” as an effort of the dominant forces of society to deny the built-in oppression that all of us (at times even those in the dominant groups) frequently experience. You have gotten to the point of being able to express that out loud, which of course makes you dangerous to the elite, but also creates a new path of freedom for you to follow. Thanks again for sharing your story and inspiring me to keep my “madness” alive!
Hi Steve – thank you for your thoughtful and validating response, as well say our kind words. It also makes me very glad that this article resonated with you, and “inspired” you :-).
I don’t know that I can touch on all the interesting points you raise – but in regards to your comment about whether the referred-to “normal” people are really “normal” (a term I have problems with anyways) — No, I agree with what you’re inclined to think as well. One of the few outside-the-box psychiatrists I was priviliged to once see, read me a quote by Aldous Huxley, who put it like this:
“The real hopeless victims of mental illness are to be found among those who appear to be most normal. Many of them are normal because they are so well adjusted to our mode of existence, because their human voice has been silenced so early in their lives, that they do not even struggle or suffer or develop symptoms as the neurotic does. They are normal not in what may be called the absolute sense of the word; they are normal only in relation to a profoundly abnormal society. Their perfect adjustment to that abnormal society is a measure of their mental sickness. These millions of abnormally normal people, living without fuss in a society to which, if they were fully human beings, they ought not to be adjusted.”
I think that is right-on, don’t you?
I think you make several important points about children – and that the way they are treated then can unfortunately lead to unfortunate consequences as they come into adulthood – for example, them too also falling victim to being branded with various DSM labels, forced into treatment etcetera. But I would need to give that subject more thought to reply to it effectively right now.
Thanks again for reading the article, and contributing to what I think is a critical discussion! Your enthusiastic words have inspired me as well.
Great quote by Huxley – could not agree with him more!
Great post. It reminded me of my own experiences and how anger saved my life. I’ve written a longer post about it but the internet has decided to swallow it so let’s just say that :).
Thank you for your words, B. I think that anger is a starting point to breaking free of false messages we are indoctrinated with – but I also see how I have allowed anger to sometimes consume me in unhealthy ways. So I am trying, currently, to work through that anger — work to change what I can, and accept that certain things can’t be changed – or at least not in my lifetime. That’s not to say I think any of us should passively stand by – but that I have to find ways to fuel my anger in different ways, and find acceptance – when things I write aren’t heard or acknowledged, when change doesn’t come, etc. — to realize that systemic change takes decades if not centuries. That is hard thing for me to accept, since I often feel so powerless. But if I can learn to be ok with the fact that my speaking out may only have a small impact in a small sector of society – but that that’s at least something, that at least I tried – it will help me lead a more peaceful life. I don’t know if that makes sense. I’m admittedly a little sleep-deprived today so I apologize if I’m not replying coherently 🙂
Jeanne, thank you so much for being willing to publicly express such intense personal experiences in such a thoughtful and powerful way. As a trauma survivor, I was deeply touched by your piece. I look forward to reading more from you!
Thank you Darby – that my article resonates with you means very much to me. I hope you are doing well in your survivor journey, too.
Jeanene, Thanks so much for writing this and sharing your writing here. Your story is so much like mine even though we are not the same age. I, too, self-harmed very briefly long ago, and this was by all means treatment-induced. For me, too, it was an expression of utter voicelessness and inability to change my situation with an abusive therapist back in 1982. I didn’t self harm after that until again briefly in 1997 after I was given a bogus diagnosis and expected to self-harm. Expectation, whether via psych diagnosis or societal prejudices, causes the expected behavior. I don’t know where the study can be found, but even physical conditions can be worsened or improved depending on the expectations of those around us, in particular those we admire, trust, and uphold as “expert.” This is why maintaining a hopeful demeanor will surely help and not worsen much of what ails us.
In addition, I think we writers are in agreement that re-storying is one of the most powerful tools we have. I have known many writers who healed from grief by writing about lost loved ones. Many were classmates from my MFA program at Goddard College who wrote wonderful pieces honoring the memory of family members. One writer I know found writing about her father so helpful that she later wrote about her mother.
On voicelessness, for sure I feel the same. I, too, had a naysayer such as your exfriend in my life, a number of naysayers, in fact. “No one cares about what you write about. Why don’t you stop?” “Why can’t you forgive, it’s already been two weeks!” “They were just doing their job.” “What do you expect? That’s how they treat you people” and, “Don’t you think you need help for your paranoia? None of what you say is even possible. You are sick!” and “You are against recovery!” and numerous expletives on top of all that. Yes, my “dark humor” has been negatively commented on as well. If you read the writings of war veterans you will see that dark humor, which they will acknowledge as a new trait they now have in common, often follows traumatic events. I also am very tired of hearing, “That was in the past, right?” in other words, “I don’t want to hear about it.” I no longer associate with those who claim “You’re triggering me!” or demand that I censor myself around them or walk on eggshells in their presence. I know I’m skinny but if I walk on eggs, they’ll still break. Please get those naysayers out of your life and you will be much happier.
Keep writing and speaking out. I, for one, am eagerly listening.
Julie and Puzzle
I didn’t mean to have that whole thing italicized, just one word. Oh well.
Fixed: the end tag just needed a / to turn the italics off.
Julie – I always value your comments. You have such wisdom to share – and with such eloquence. Thanks, too, for reading my writing. I know you can relate to it on a special level. It’s always helpful to me to know you’re out there, writing on similar themes. I think the self- harm issue is very interesting – its origins are different for everyone. I certainly never expected myself to engage in such a thing. And it has served a very different function for me than for most people I was in ED treatment with…. It’s unfortunate that so many mental health professionals don’t understand the subtle forces behind such acts, and how different it is for everyone. I’m really glad you found writing, too, and continue to be impressed by your blog, your books – and your MFA (something I always wished I could have obtained, but have never had the means or ability to do). Thanks again!
By all means, Jeanene, there need to be more of us. I’ve tried so many things, including working for ages on a newsletter. I sent out the first issue to about ten people. I received no feedback and not even a “thank you.” One of the people who asked for the newsletter defriended me on Facebook and the one “thanks for the file” was obviously written by a person who had not even read it and had no intention to. This is the voicelessness I am speaking of. After I blew the whistle on MGH and other places, word got spread around among the local ED “treatment buddies” that I was “against recovery.” I’m sure one of the facilities is deliberately spreading these lies. I have heard reports of “staff,” etc, telling patients to stay away from me and that any association with me will ruin their “recovery.” So when I tried to start a writing group for people with ED (which the local NEDA told me was sorely needed) of course, no one would even agree to show up or support the idea. I couldn’t find a single place, a single venue where I could speak out in all of Boston, since in antipsychiatry many thing ED is trivial (you die of it…yoohoo!) and in abuse venues I wasn’t allowed to mention therapy abuse, since doing so might dissuade people from “getting help.” Since my reputation was ruined there, I couldn’t start anything myself either. People who know me tell me it’s a good thing I left Boston, and that I left just in time.
The freedom from oppression is amazing, not something easily understood by others. I am not only away from the MGH corporation, but away from the shrinkage mentality that is pervasive in USA society. You just can’t get away from it there. For instance, a friend here in Uruguay who knows nothing of my history tells me that she was drinking a lot of diet Coke. She told me she was starting to get panic attacks. She realized the diet Coke was the cause and stopped drinking it. The mentality here is do-it-yourself and not to go running for “help” to see some “expert.” What she did, finding the cause, was typical, since people here do not have the “ask your doctor” or “what’s wrong with you” mentality. Shrinkage is unpopular here, but we do have AA and we do have other ways that people can find support such as going to a class, doing music or sports or dining together. This is a poor country where folks aren’t going to pay for frivolous things such as going to an office to talk to someone when friends and family understand us better. The family structure in Latino cultures is far more cohesive than in Nortamericano cultures. Domestic violence seems to be more common here but other than that, I think it’s a terrific environment that doesn’t seem to breed singling out or labeling. I dream of the day USA stops all psych labeling, because I know most folks can’t up and leave as I did. Most people in USA, even people who are extremely well educated cannot grasp how vastly different it is here, that when I speak of freedom, I really mean it.
I’m at the point where I have had to rid myself of the naysayers completely, all of whom just can’t get it out of their heads that maybe I wasn’t “sick” in the first place. The only place I can really express myself freely is in my blog, which I’ve had now ten years and written in it almost daily. Get away from those who expect certain behaviors from you, and lo and behold, you will suffer far less and most of these unwanted behaviors will completely disappear. Occasionally I get thanked for what I do, that I helped someone, and that, to me, is all I need, far more valuable than a paycheck.
Your voice is sure to bring legitimacy to the growing body of protest literature around the mental health system, providing a feminist perspective to boot! Well written and very inspirational! Thanks for inviting me to reflect on the treatment for ‘eating disorders’ a subject about which I know very little, using a new lens. Are people who are diagnosed with ‘eating disorders’ routinely subjected, like my daughter, to involuntary hospitalization? If so, I want to share a little of my daughter’s story from a mother’s perspective and why I think that agency of our children’s bodies are so important.
I once brought my beautiful 18 year old daughter to the ER for ‘treatment’ when she was experiencing extreme emotional distress, confusion, and an identity crisis. Big mistake. With every subsequent, involuntary treatment and court commitment (Oregon) after being subjected to every drug imaginable, it became clear how harmful the ‘treatment’ was and she became worse and worse. She has gone from state hospital, to ‘step-down’ facility (locked sixteen bed treatment facility) to foster home back to hospital again and again for six years.
More recently, for the past several months, she has been shouting loudly to herself on a frequent basis. This is new. Sometimes she finds it challenging to have a ‘coherent’ conversation, at least when one measures the conversation by ‘sanist’ standards. This is partly due to the extremely sedating dopamine binding drugs which diminish her cognition and make her confused and tired. Sometimes she has difficulty swallowing, and she experiences vertigo and black-outs. As each new debilitating side effect becomes manifest, she becomes angrier and more resistant. Thank God she is sturdy enough to be resistant. But like a fish in the net, resistance breeds more suppression and oppression. More anger equals more ‘medicine’ and more labels and new, ever worsening diagnosis and prognosis.
Since that first traumatic treatment at the ER and nearly every subsequent involuntary hospitalization since, my beautiful, proud daughter was routinely dehumanized by having all of her life problems discussed through the lens of an incurable ‘disease’, by having her freedom taken away, and by being told that she she lacked the insight to take charge of her own medical decisions. When she tried to run away or protest from her captors, she was routinely restrained, secluded, and forcibly injected by ‘caring’ people with ‘good intentions.’ Is is any wonder that she has some deep rage that needs to come out?
In the past, my daughter used any means at her disposal, including shutting down her own body and using ‘selective mutism’ to protest her psychiatric ‘treatment’. Finally, by some miracle, and partly with the help of voices like yours, I and other family members started to teach ourselves how to listen to and hear our daughter’s prophetic and authentic voice, at least in part, and here is what she has been saying all along: I am not a sub human, diseased individual who can only hope to spend the rest of my life on the sidelines, marginalized and isolated from society because of the stigma of my psychiatric diagnosis. I am a child of God; as such, I am not what I have been programmed to believe about myself; I am what I was designed to be, a loving individual worthy of being loved unconditionally for who I am. I do not know always know how to protect myself or how make my way in the world but I am worthy of your support to realize my dreams and manifest my gifts. I am worthy of joy, friendship, full citizenship, procreation, safety, sexual expression, privacy, autonomy, spontaneity, creativity, and freedom of choice in my own treatment, including the choice to have no treatment at all.
If my daughter teaches me nothing else in this life, the fact that she made me see her in her fullness and hear her voice, which turned out to be louder and truer than all the false lies being told in this corrupt, disability industrial complex, is enough to fill a mother with humility, gratitude, and purposeful activism for a lifetime.
Her medical records indicated at one point that she exhibited ‘poverty of speech’ but what her treatment providers couldn’t grasp is that her ‘poverty of speech’ was often simply an ancient form of civil disobedience. Even Jesus refused to speak to his captors, except in riddles. Now, in retrospect, it seems natural that my daughter chose safety in catatonic silence or by encrypting her language in ‘rambling riddles’. Why would anyone speak their truth, if their truth will be perceived as a confirmation of a medical diagnosis that itself is the source of great trauma and despair for the truth bearer? Better to retreat in the safety of silence.
Now, she is experiencing the opposite of silence: She has the desire and compulsion to release words that have been pent up for years. Her words are sometimes so unpleasant and filled with such rage that by expressing them, she puts herself at daily risk of being secluded, sent to her room, (‘voluntary’ isolation), receiving ever higher dosages of debilitating medication, or new labels. It is better to be silent and hide one’s hope in the deepest recesses of one’s mind or lash out violently without regard to the consequences?
Please bear in mind that my daughter doesn’t scream and rage all the time. The ‘medicine’ given to my daughter to make her more convenient to take care of, causes her to sleep sixteen hours a day. But when she is awake and alert, it’s not all unpleasant. She is one of the most perceptive, clairvoyant, sensitive, and insightful persons you will ever have the pleasure of meeting. She plays the guitar, dances in the hallway, writes, and dreams in the safety of her own bed. And the workers aren’t all bad. For instance, there is one social worker who plays music WITH her. If you are one of the professionals at this site who occasionally breaks the rules to do the right thing by your client, thank you, thank you thank you!! It is people like you who gave our family hope and kindness when it was needed!
At all of the institutions my daughter has been exiled to, there were always one or two professionals who whispered encouraging words to me and my husband as they accompanied us though echoing hallways and through multiple, locked doors. Sometimes, workers tried to make the barren visiting rooms more presentable (you know the room: single table, peeling paint, two plastic chairs, and a spy cam) by bringing tea for three in Styrofoam cups. Onetime a worker inadvertently and boisterously exclaimed for all the world to hear, as she was assembling a motley slow moving crew of highly medicated patients into a van for a group field trip, “I can’t imagine how traumatizing it must be to be forced to live to this place!” I loved that worker on the spot. Once, a secretary of the Executive of the State Hospital went out of her way to locate her Executive at a Friday evening function, in order to obtained his written authorization, on very short notice, for our daughter to receive an emergency release to attend a family funeral that weekend.
Once in a rare moon, a professional will even step out on a limb and become an ALLY and work with the entire family. God only knows how much heat they must take for that. After all, if our daughter is convicted of a ‘mental illness’ then the entire family must be suspect.
There are islands of peaceful clarity with our daughter. At her current locations, we have Skype sessions (the most recent Skype involved our family singing “For She’s A Jolly Good Fellow” because merriment at family reunions is one of our mad norms) and there are pleasant communications: sporadic emails, cards, and phone calls: all kinds of positive interactions that provide the seeds for her own and our family’s eventual recovery. Even though she says she no longer understands ‘language’ or she claims that she needs “help relearning how to communicate” she usually manages to say the important things perfectly and just needs encouragement to remember how important her voice is. And she gets on track again. Until some meathead mental health worker says something stupid like how sick she is.
These islands of clarity are almost never the result of her forced treatment or medication. They are almost always the result of someone treating her with respect and dignity or because someone remembered to correctly and judiciously reinforce her hope, strengths, and dreams, not her bogus, subjective diagnosis. Some of the workers in these institutions are lacking in any common sense or knowledge of how words hurt. I mean, they don’t even know that people with psychiatric labels experience full recoveries, more often than not! I mean, where do these people get their college degrees? Even my sister-in-law, a brilliant pharmacologist at one of the best colleges in the U.S., once responded to my daughter’s angry outburst (ostensibly to ‘console’ me) “Don’t worry. That is just the disease talking” That is crazy to refer to someone’s justified anger as confirmation of their ‘disease’ or to refer anyone by their ‘disease.’ This is madness! Since when did extreme emotional outbursts after being forcibly treated in a manner that the United Nation’s calls ‘abuse and torture’ constitute a confirmation of ‘disease?’
In institutions, we tend to medicate people experiencing extreme states into catatonic silence regardless of their need to process grief or rage (negative symptoms over positive symptoms) just to keep them from disturbing others. Wouldn’t it make more sense and be less stigmatizing to treat the caregivers instead and not warehouse people in distress together? I identify with being a temporary caregiver for my daughter because I and my husband of 30 years are seeking guardianship to get our daughter out of the infernal cycle of institutionalization. It’s not an ideal solution but it’s a realistic solution since there are no Soteria places where we live.
My point is that I would love for someone to treat me or our entire family, instead than just treat our daughter. But we have no Open Family Dialogue where we live and the ‘off-the-rack’ family therapy (talk therapy) that is available in our community almost always focuses on the diagnosed individual, not the entire family system.
And what would I hope to achieve with therapy? Surely not learning to ‘accept my daughter’s illness’. Hell no. I want something far more valuable: like treatment to help me to view my daughter’s rage differently. What if a family member’s rage could elicit from me the same sympathy and compassion I feel when a family member weeps or steps on a piece of glass and needs first aid? Or education or treatment to help me discern whether an undesirable behavior is caused by side effects of harmful diagnostic labeling, learned helplessness, over-medication, harmful side effects, family dysfunction, unhealthy relationships, betrayal of trust, psychological damage from years of harmful coercive ‘treatment’, or maybe just the angst of being human? Or maybe treatment to help me change my perception of ‘undesirable’ or ‘inappropriate’ behavior to begin with. How much of my personal disturbance is escalating or exaggerating the said behavior? Is the inappropriate behavior actually a normal response to abuse or neglect and if so, what is my role and my responsibility? By the time a person has been in the mental health system for years, if not decades, the energy surrounding that person is dense; their walls of protection are built within walls. Where does one begin to unwind the abuse and damage?
And if I am lucky enough to find an appropriate and caring counselor who can treat me the caregiver and take some of the burden off my daughter, what stigmatizing labels to I have to accept so my counselor will have the means to bill the system for his/her services? Recently, I went to the doctor to have a pap smear. When a document was issued in relation to the services I had just received, I read in the top left margin of the paper, the label I had been given: ‘adjustment disorder’.
Previously, I had laughed with my counselor when discussing what label should I should be given in order for our valuable talks to be billable. We had decided on the label together. But seeing the label in writing, something previously humorous gave rise to an uncomfortable feeling that some information had been conveyed without my express permission. Why did this label appear on a document that was produced for the purpose of a gynecological procedure? How will my daughter’s labels dog her for life? How is this information processed and protected?
Her privacy has been violated in the deepest sense possible. Her body has been trespassed upon. God forgive those people who promote the Murphy Bill or who call for funding for forced or coercive psychiatry under the name of healing. My daughter has a right to feel rage. I have very little patience for advocates for the ‘mentally ill’ who receive generous milk and cookies from the system, even lucrative ‘fellowships’ from pharmaceutical companies to share their personal stories but who then discount the need for rights in the mental health system even while their peers are in desperate need of greater protection from harm.
I have even less patience for celebrities who participate in campaigns to to be ‘reduce stigma’ when in fact, they are doing the exact opposite: by giving legitimacy and cover to coercive psychiatric practices. I have the least amount of patience for low paid mental health workers whose job it is to disseminate medication, by force, if necessary but who turn around and call for an end to ‘stigma.’ Excuse me? You don’t have a problem with this discrepancy between what you say and what you do for a living? People who promote the Murphy Bill point to those poor homeless people on the streets. When is the last time Senator Murphy even spoke to a homeless person?
There are many people on the streets today who are being ignored and not treated like human beings. That is their problem. Not lack of access to psychiatric treatment. Sometimes their only contact is with a police officer when another ‘normal’ person has made a complaint. Sometimes because these people do not follow conventions or they appear to be talking to themselves incoherently, they may look and sound sinister. But take a risk and start a conversation with someone who is ‘different’ or may be a little ‘sinister’ looking or sounding. Be prepared to be amazed.
Once, I talked a person on the street who was dirty, shirtless, a little wild looking and who was speaking incoherently to himself. (He latched onto me instantly simply because I made eye contact with him) I listened diligently to his story. It didn’t all come out in one logical, linear stream. It took some radical listening. What I found out moved me to tears. He had just been released from prison. He was raped in prison. His best friend was raped and killed in prison. How many people who are branded as crazy have horrible locked up secrets inside? How many are carrying the scars of our abusive, disabilities industrial complex or prison industrial complex?
I used to consistently greet and talk to the same depressed, weather beaten, person on the street. She was on the exact same street corner every Saturday panhandling and I would routinely stop to chat with her on my way to work. It wasn’t easy to carry on a conversation with her. She was mute most of the time but she knew how to ask for money consistently. I listened to her life story. Her infant baby died years ago. Once, she was very keen to get a hold of some propane fuel because it was the dead of winter. I went to some lengths to get my church to give her the money for fuel. The staff at my church was very concerned that she would spend it on drugs. Apparently, she was well known as an addict in the street community. I was very keen to give her the benefit of the doubt. They gave her a store credit. I didn’t see her for sometime, then I forgot all about her. I was astonished several years later, when a good looking woman walked up to me and treated me like an old lost friend and wanted to hug me. I couldn’t recognize her as being the same woman. She was cleaned up, radiantly happy and surrounded by family. It wasn’t until after she went on her way, that I remembered who she was! She was recovered! She was the lady on the street corner.
How many of the people E. L. Torrey purports to want to help, especially those living on the streets, are running from the psychiatric ‘treatment’ they already received in an institution? How many of them simply want propane, family support to help cope with a loss, and to be treated as equals?
Why do advocates for the Murphy Bill, describe these people on the streets as the very ‘proof’ that we need more psychiatric treatment by force, when in fact, these people provide substantive proof for the opposite: that we need less forced psychiatric treatment, not more. These people already were forced to drink the poison kool-aid and many do not want more. They want housing and dignity and freedom.
They are refugees from the failed psychiatric system that robs people of hope. These institutions are dangerous places that force people to accept abuse in the name of treatment and force them to show signs of gratitude for their ‘care’ as proof that they are fit for release. These institutions are operating because parents and family members are desperate to get their family members off the streets and they don’t think they can keep a family member safe. Families don’t know any better because their only knowledge comes from NAMI and other pseudo consumer organizations who teach that their children’s behavior comes from disease and cannot be handled any other way other than medication. They don’t know about Dr. Mosher’s achievements, MindFreedom, the I Got Better campaign, the Soteria movement, the need to demand their law makers for accountability in the mental health system, the need to demand for alternatives that first do no harm.
Our children who are surviving in the mental health system need a massive rescue operation from psychiatric harm and oppression. Our children who are keeping their personal inviolate truths safe by encrypting their language need loving listeners and code breakers, not medication.They are using their very bodies as a mirror, inviting the rest of us to see our collective ugly side and calling us to do something about it. Do we have the courage to make eye contact with our children and stand in solidarity with them?
Talk to people who are different. Listen to those who mutter or shout to themselves. Visit the untouchables. Visit the people in jails and psychiatric units. When you do, you will understand that there are ‘islands of clarity’ in everyone’s speech. Learn to listen from the heart.
Think about what we consider success for a child in this culture. Many of us parents start off trying to groom our children for Harvard and an elite life, or whatever society deems successful but our society is devouring our sensitive children.
In some Native American traditions, a person kept their totems tucked safely in their ‘medicine bags’ These were reminders of their animal protectors and as such they are very personal, very sacred; not something to be taken lightly and displayed.
Everyday, we see more and more evidence that our children’s protections are being taken away. Children and young adults are being bullied, trafficked, abused, and monetized. They are on billboards for Calvin Kline or groomed for college football. They are put into the foster care system and drugged.
Every child has the divine right to exist and be a vehicle for divine love but unfortunately their worldly protections are weakened or absent because our entire culture has been infected with salacious greed. Fewer and fewer of our children will enjoy worldly success and protection unless they are born into a privileged class. Today’s children must work incredibly hard, under lots of harmful influences, to find their connection to the divine. Children are not taught that their bodies are sacred so by the time they reach adulthood, they have few boundaries.
My daughter understands the darkness of our dominant, sick culture. Every day she walks in circles in a small sixteen bed locked facility from the corridor comprising the row of patient rooms, to the day room where the television is located, to the nurses station: a grisly, architectural wart surrounded by soundproof, bulletproof glass through which patients, at risk of their dignity, must approach and speak, through a speakerphone in order to receive some small grace such as a washcloth or a piece of soap. This is her universe. She hasn’t left the facility for six months. Not a single walk around the block, not a drive in the car to a store. For six, agonizing years, she has stayed at facilities like this for similar stretches of time, afforded few of the freedoms you and I take for granted.
That has been her life for six years. And her caregivers blame her when each medication fails to soothe her rage. They blame her when each ‘behavioral modification’ fails to produce good behavior. Such as when they offer to buy her a latte drink at the 7-Eleven across the street when she goes a full day without an ‘episode’ as one would reward a dog with a bone (my husband’s metaphor)
So she protests by shouting to the walls, as she has for nearly six years, her courage and love intact (endangered but not extinct) and I love her dearly and can’t wait for her to come home once again. I imagine there will be some shouting at home too as well as times of laughter and joy. But I will listen to her rage as well as her words of love but my love will remain constant.
Madmom, you are an amazing, extraordinary mom, and your brave and beautiful daughter is lucky to have your love, strength and courage. What will it take to rescue your daughter from the psychiatric hellhole and bring her back to her family? You are a powerful, eloquent voice for your daughter (and every young person in the clutches of psychiatry), and I imagine that if you were to send your post to the Governor of Oregon, it might get someone’s attention. But I have also heard of the system retaliating against those imprisoned by psychiatry, to “punish” their parents’ activism and outspokeness. What can the rest of us do to support your your family and your daughter’s rescue?
Thanks for the kind words. I’m positive that it will take a village to get her out and keep her out. Want to be a part of our village? My name is Sarah Smith and my email is [email protected]. My husband and I are downsizing our lifestyle so we can focus on supporting her but we will need lots of friends to drop by, call, and support our entire family during the most acute period since getting out of a psychiatric facility is a tough for a family member even with lots of support. For one thing, siblings can get jealous of all the ‘attention’ of the diagnosed one. And believe it or not, so do the diagnosed children! Well intended extended family members and friends, co-workers and fellow parishioners can be very judgmental and take a dismissive attitude of our daughter’s plight, especially if they are employed in any medical profession. For this reason, families often have to start from scratch by dumping many old friends, renewing old neglected friendships, and be seeking new allies. This is normal but it takes time. Some families even have to acquire new employers and landlords who are more tolerant.
Even the closest of friends tire of hearing about a struggling family member or about the failing mental health system. Families who have no experience of a family member stuck in the mental health system lose patience just as grieving parents are allowed to grieve for a lost child only so long, then the implicit message is that they must ‘get on with their life’ This is one of the reasons for NAMI’s success. Parents are desperate for friends during a protracted recovery process (which NAMI would call a protacted illness). Unfortunately, NAMI has a monopoly on providing support for parents and cost for receiving this support is very high; if one takes their awful ‘Family to Family’ class it is atrocious in quality and filled with myths and misinformation. Some of us who tried to raise the issues outlined in Robert Whitaker’s ‘Anatomy of an Epidemic’ were shut up and silenced and we just lost interest in attending NAMI meetings altogether. I admire those parents who still go to NAMI meetings ostensibly to change it from within. I cannot tolerate the climate in NAMI. Better people than me can fix NAMI. I would rather start from scratch.
One thing is that if there is a Soteria in your community support it with all your means! It is exhausting to protect a young adult who goes gets their freedom and goes cold turkey off his/her neuroleptics. When someone through neuroleptic withdrawal syndrome and they can’t seek or obtain medical help without risking rehospitalization the family must go it alone. If an adult child goes for days without sleeping and starts to cause a disturbance, it becomes a full time job to pacify neighbors, friends, bosses, landlords, police officers, etc. The medical system adamantly refuses to recognize, let alone treat long term psychiatric harm, the first layer of the onion which must be peeled back before one can get to the original trauma. If you know of a family helping a family member go through a protacted withdrawal, please drop by with a casserole as one would if someone had cancer.
Thanks for giving me the idea of contacting the governor. If our petition for guardianship fails (even being an outspoken critic of the current mental health system is potential grounds for some parents to be forbidden to have any contact with their children) or even if it succeeds, this is a good idea to pursue. Our current governor Kate Brown is the former Secretary of State and as an out of the closet bi-sexual, she may be sympathetic to those who go against the grain of the status quo.
Are you a mother?
Of course I want to help. Your daughter and family will need lots and lots of support. I will e-mail you.
One thing that you said really concerns me: “It is exhausting to protect a young adult who goes gets their freedom and goes cold turkey off his/her neuroleptics.” I hope and pray this is not the plan because stopping meds cold turkey is virtually certain to end badly…more of the dreaded mental health system, perhaps the legal system, and more meds. Even a slow taper carries lots of risk (by the way, Breggin’s formula of 10% of the then current dose every 2 weeks is way too fast for anyone who has taken these meds for more than a couple of months). Alto Strata’s website is an excellent resource for withdrawal issues, and her (very wise) counsel is to go very, very, very slow.
Locking up your daughter, even if the intent is to protect her from the “mental health system” would not be the answer. You daughter would not like a home prison any more than she likes her current prison, regardless of the different motivations. She needs to be able to go outside. She needs the sun, fresh air, nature, earthing. So it is imperative that she maintain good functioning and not attract the wrong kind of attention of busybodies, police, the mental health system, etc.
Your daughter will need great therapy and support to rebuild her trust in people. Family therapy can be a very good option when she is accessible and ready. She will need a good diet (organic, grass-fed, free-range gluten free, grain free, sugar free), nutrients and probiotics. (Yes, all that is expensive and I wish I had a solution for everyone..) Everything matters to mental health. For us, the breakthrough came from nutrients. You will need to become a detective and a sleuth who never stops searching. Some things are blindingly obvious (unconditional love, nurture, the human connection), others less so. Would you ever think that earthing, walking around barefoot on ground or grass (not sprayed with chemicals), is healing? (In the winter, in cold climates, you need earthing sheets and mats.) Earthing is healing. It is anti-inflammatory, calming and sleep-promoting; everyone should do it, but it is especially helpful to people trying to free themselves from psych drugs. Don’t forget gut health. Energy work can also be effective. But you need to be very careful. Not everyone who is anti meds is intelligent, capable or well-motivated. There are charlatans out there, ready to prey on vulnerable people.
About NAMI. I draw a distinction between the organization, which is a big part of the problem and the desperate families who go there for support because there is no other viable source of support. Not everyone will be persuaded. For some parents, it will be difficult to face up to the fact that they made a terrible mistake in trusting the system and allowing their children to be medicated, often over their objections. Others will be able to face up to this and will be open to non-drug approaches, particularly as (1) they see their children disabled, rather than healed, by drugs, and (2) we can show them that recovery without drugs is possible.. I do like your idea of countering their messaging by downloading MFI materials; I will do just that.
About contacting your state’s governor; you know better than I the potential downside (retaliation by the system). Ideally, your words, which are powerful, will reach the governor herself and she will turn out to be one of the relatively rare people who are smart enough to ask question, are able and willing to learn, and manage to do the right thing. I am jaded enough to be amazed when people do the right thing (because it is so rare), so I do not know if this is the right approach. It is a tough call, especially if your daughter is not able to weigh in; is she? If you decide to so this, be sure to include some back-up to document that ham that is being done here: e.g., Thomas Insel’s declaration that the DSM lacks scientific validity (so what is the justification for force-feeding people brain-destroying neurotoxins?); Grace Jackson’s and Robert Whitaker’s affidavits (I think they are available from MFI); information about the Harrow and Wunderink studies.
All the best to your family and especially your daughter. I I will be in touch.
Just curious reading this, has your daughter had a chance to get some good long-term individual therapy with someone who knows how to work with psychotic or regressed states? Or have the involvement with the system and overmedication precluded that?
I don’t know if your daughter has the interest or motivation or if your family has the resources to support her in such therapy. There may be ISPS (www.isps-us.org) members near to where she lives that could work with her on a sliding scale if she can become free from the hospitalization/medication system long enough. Maybe you know Ron Unger in Oregon is near to you and he or his associates may have referrals.
Just an idea.
Hello bpd, your comment (and concrete, constructive suggestion) is MIA at its best!
Thanks! The ISPS workshops in our community (by Ron Unger) have been a God SEND! So was the ISPS conference in New York. I can’t wait for my daughter to find a mentor/teacher. I don’t even want to use the term therapist anymore in front of my daughter. When someone has been forcibly treated, a chance to develop a ‘theraputic alliance’ is kind of a long shot, don’t you think? Still, I hope such a relationship can develop and ‘stick’ and I think you are spot on!
I don’t think this is the case necessarily, although it would be an understandable expectation for someone in your daughter’s position.
There can be and often is a big difference between seeing a therapist in a safe private practice setting, and being “treated” in a hospital or public setting where there are loads of people, no quiet or peace, use of coercive methods and attitudes, etc. If the private practice therapist is skilled in understanding trauma/psychosis, i.e. someone like Ron Unger, they will for the most part not retraumatize the client. The role of such a therapist is so work collaboratively with the traumatized person to understand what has happened, and to be many “good” things to them – a mentor, teacher, (limited) parent, protector, ally. Many of the things that an establishment psychiatrist who (over)medicates and labels can never be.
I hope at some point your daughter has a chance to work collaboratively with someone outside the psychiatric system and to titrate down her medications if possible. I understand this hasn’t happened yet because your daughter has been locked up, right? I’m sorry to hear that.
I think it is great you all have a space to talk in, but perhaps it might be more productive to continue this conversation in an MIA forum? Keeping comments on an individual article on-topic helps better-foster discussion of that article’s themes. I think madmom and other people who’ve commented on her situation are discussing very important things, but it’s also hindering further discussion of some to the topics I was trying to raise. Thanks 🙂
Great article here, very honest and forthright.
I agree with so much of what you say – about the myth that life problems are mental illnesses, the non-awareness and rejection of the severely emotionally distressed by people in power, about the need to develop one’s own paradigm of “mental illness” to find a way to recovery outside of the disease model, etc.
Maybe you can list your website on here, if it is still up? I’d be interested in seeing that.
Although I never read your article on the issue, I had had the perception myself that eating disorders and their treatment were being made into an industry by specialized treatment programs. Vulnerable women seem to be latched onto as a source of profit for this industry, which is a big shame.
Also I relate to your experience of being ignored when you tried to publish something exposing this industry. A while ago I called out John Gunderson (Harvard psychiatrist) and Perry Hoffman (leader of National Education Alliance for Borderline Personality Disorder) for spreading outrageous lies about Borderline Personality Disorder being an “illness” with biological and genetic foundations/causes. They were unable to answer my pointed criticisms, and ended up slithering away like the charlatans they are.
I told Gunderson that fearless people like me are going to suck the life out of his theories so that fewer people will believe the lie that they have a life-long genetically based personality disorder. He couldn’t defend his ideas about BPD having a biological basis with any rational facts or evidence. It’s sad to think that someone like that is looked up as a false authority.
Lastly, I disagree about Black Lives Matter. I think there are a lot of problems with this group and that their tactics are frequently not ones to be admired. In the last few days, the images of BLM protesters chanting, “Pigs in a pigskin, fry em like bacon” are particularly disturbing, (translation: dead police in bodybags, burn them like bacon) – http://minnesota.cbslocal.com/2015/08/30/black-lives-matter-chant-called-disgusting-by-police-leader/
If I were to copy this Black Lives Matter chant for psychiatrists, I’d be arguing that psychiatrists should be electroshocked, sedated for life with zombification neuroleptics, forced to believe they have an incurable brain disease, and have 25 years of their life stolen away. But that wouldn’t be right. And I’d advocate storming into meetings of psychiatrists, holding up their conferences, forcibly taking control of the pulpit at their events as an outsider, and forcing the closure of their meetings. But that wouldn’t be right either.
Hi “bpdtransformation” – Thank you; your comments are very on-target. To answer one of your questions – yes, atrocious things are occurring (imho) in the ED Tx world. For-profit, residential treatment centers are presented as first-line treatment to vulnerable women and families who don’t know to dig deeper or ask questions. They claim to use “evidence based treatments” but don’t, and none of them track outcomes to demonstrate whether their treatments actually work. The centers can perhaps help some women with less complex “eating disorders” (a label I don’t subscribe to), or women who have struggled for very short amounts of time. But I know many more women who get sucked into the revolving door. It is amazing to me that a completely unregulated, private industry is touted as a science-based, guaranteed path to health. And things are poised to get worse as a pending federal bill would mandate coverage of private, for-profit residential treatment in all states. While parity can be a good thing – that’s not necessarily so when it’s mandating coverage of an unproven treatment – and even worse, a treatment which often does more harm than good…. Anyways, I could go on at length about the subject, but you can see my stories on the industry here: http://adisorderedworld.com (that’s my site). I applaud you for speaking out and being a “whistle blower” as well! It is SO hard. Hardly anybody in the insular ED world gives my points any credence – even though I am always careful to back claims and stories with an abundance of research and voices from academia and the like (while they are not necessarily the true “experts” – I do this in my attempts to be taken seriously. But alas it still doesn’t work). The brain-based model predominating, is a huge problem in the ED field right now, too — almost all the funding goes to gene studies, etc. It drives me crazy… As far as the Black Lives Matter movement goes – I’m not informed enough on some of the extremists’ tactics to comment. I am hoping the people you speak of are the exception rather than the norm. Most of the coverage I’ve viewed are citizens participating in peaceful, nonviolent civil protest which does not use such slanderous language. I wouldn’t condone anything else. Thanks for reading the article and your comments!
Jeanene, your words certainly echo the experience of so many who have felt deep pain, yet whose feelings have been denied or medicalized by our society and the psychiatric industry. I have always remembered the writings of the first patient that I treated who self-injured, “When I feel the pain and see the blood, I feel that I just may be alive”.
We seem determined as a society to deny or cover up the pain that so many feel. I think that the emotional pain of many people who have suffered, scares many people as it touches on some aspect of deeper pain that many people experience. I was taught that by listening to the life experiences and the emotional depth of those who have been traumatized, that we can better understand all human experience.
People who show what the DSM calls symptoms are telling us about their personal experience and about aspects of our society. We should feel respect for all those who cry out in one way or another as they are telling us what can go wrong in life, and possibly what changes in our world are necessary.
Dr. Hoffman – thank you so much for your thoughtful comments and your understanding of some o the the forces really behind “mental illness.” Your patients are lucky to have someone like you to help them. I of course agree with what you said. I had another quote in the original draft of this article which had to be cut. It was from J. Barchillon in the preface to “Madness and Civilization”: “The roots and symptoms of folly are being looked for today in psychology, medicine, and sociology, but they were still and are as present and important in art, religion, ethics, and epistemology. Madness is really a manifestation of the ‘soul.'” I think that quote gets at similar points you made. The quote from your patients is also really powerful (and, in a way, beautiful). Thank you again.
BPDTransformation, I don’t know who you are nor where you are, but I know Gunderson, too. I won’t shut up about how badly he treated women. I spoke with him a few times in 1997. For one thing, I doubt the existence of BPD. I strongly confirm that these behaviors exist but they are almost always treatment-induced, circumstantial, and no way a lifelong set of personality traits. Shrinkage encourages these behaviors, and at the same time, deeply insults those that engage in them. They would never acknowledge that they in fact thrive on patients who cut and repeatedly attempt suicide. They love it. If nothing else, they find it a great reason to slam us down. I wrote a piece on this recently, in fact. It all feeds into the intense need for power in people like Gunderson. I wouldn’t give him a second of my brain space except to ruin his reputation as best as I can. When I recall that he diagnosed everyone who came near him with BPD, I seethe inside. These doctors have no clue what it’s like to live with that permanently on your record. I was lucky someone realized I was subject to a phony diagnosis and took it off mine. He should take time off from being the BPD guru and learn some manners, maybe sit in on a kindergarten class.
Thanks for your comment. It was a proud moment when I said to Gunderson something like, “John, people like me are your reckoning, here to end the borrowed time your theories have been living on!” This was after I had a conversation with him in which he defended bullshit statements about BPD being an illness with a genetic basis. I let him know in no uncertain terms that we the formerly labeled do not accept his lies and will not stop fighting until he is fully exposed as a charlatan. I think I said it in almost those words; I am pretty blunt and unforgiving when it comes to people like that. He did not like that!
BPD is not real in the sense of being a disease or a life-long illness. But borderline states are real… they are usually the product of severe abuse and deprivation. Most frequently they come from terrible parenting, in which the child never develops a secure sense of being loved as a separate person. Borderline splitting involve splitting such that negative images of oneself and others are relatively stronger than positive images of oneself and others. This results in the inability to self-soothe and the destructive behaviors and volatile relationships that get characterized as “borderline.” But… these borderline states exist in infinite varieties and degrees, and they also exist on a continuum with normality. Further, they are clearly produced by environmental failure, not by anything innately wrong with people or their brains. So the idea that BPD is a distinct separable illness with a genetic basis is just bullshit.
I believe BPD is the most harmful of all the diagnoses. I am so lucky I got that taken off since I didn’t fit the description at all. I did engage in behaviors briefly but as you say, there’s a continuum and McLean’s flat out lie that I was “severely borderline” was complete bullcrap. As soon as I left the environment of low expectations, I thrived, and this happened again and again until I realized what was happening. The BPD diagnosis was all coverup for ECT damage. So every time I had cognitive trouble they called it “dissociating” and if I complained bitterly about my thinking not being right, I was called “attention-seeking.” They said over and over that nothing was wrong. The worst of it was when my family was informed I had “severe BPD” and to distance themselves from me. Bye bye family. Due to none of my own actions, no tangible wrongdoing, nothing in my character, my brothers hardly ever speak to me and I have two nephews and a niece who don’t know me. My mother died a couple of weeks ago and I had no chance to say goodbye nor was contacted the day of the funeral. I dream of family reconciliation but I think I will need some sort of mediator to help with this since they discredit everything I say “Don’t listen to her, she’s delusional”…etc, even though BPD was taken off years ago.
Jeanene, even here at MIA I still hear, “They are just a bunch of spoiled, skinny kids.” or, “They are fat gluttons.” MIA needs voices from survivors of ED “treatment” such as you and I to educate folks here. Also, within the ED circles, hardly anyone who calls herself an “activist” is speaking of human rights, but speaking of right to treatment or right to uphold the ADA and nondiscrimination. I’m not saying these things aren’t important but no one seems to see that the “care” isn’t care. It’s inhumane, it’s torture, and it rarely helps anyone, and that is plain as the emperor is naked. Keep on writing!
Julie – I’ve received only welcome arms and positive comments on MIA, and from their staff as well. MIA has been the most wonderful refuge for me, as compared to the writing I’ve tried to spread to ED folks…. On that note I am largely in agreement with you as far as the ED world goes. Again, it is amazing to me that consumer/survivor groups and movements are nary to be found in ED-land. And yes it’s not like advocates or professionals are bad or doing things purposely hurtful – they are just used to dismissing us as “mentally ill” individuals with malnourished, broken brains, people who obviously shouldn’t be taken seriously. I think its perhaps the combination of “mental illness” with “malnourished brains” which makes it particularly difficult to spread viewpoints like ours in the eating disorder community. (We do need to connect more to help make that happen. I’m just always so overwhelmed 🙂 and behind on things… !)
When I found MIA I learned I was not alone. This was huge for me and I’m grateful. I’ve learned, though, that all organizations are alike in that they have their elite, their cherished favorites, and they have those on the fringe as well. I kinda feel lost here, like there’s no place for me here and I have not always been treated with welcome arms. When I ‘ve complained, I’ve been blamed. I feel like I can’t win. I keep telling myself I’ll start my own website, since I have several sites already. I’m scared that in trying to publicize to gain support my idea will flop like everything else I try due to lack of participants. I’m not good at PR. That’s why I need to team up with others who are better at it than me.
I agree with BPD transformation. Even though in the past I have stated the idea of therapy is all wrong since it creates an unbalanced relationship, leading to bribery and control, I believe there are a few therapists out there who refuse to diagnose. This is far more important than their attitude on drugs, and goes beyond simply affirming that drugs aren’t a good idea. Therapy is inhumane if it confirms psychiatric “illness.” Therefore, only a therapist who doesn’t take insurance (which demands diagnosis) and who is NOT part of a hospital clinic or an arm of the state is a safe one to see. Also, we humans tend to categorize to make sense of the world. This is normal and natural but boxing someone into an expected role that’s guaranteed to stick around for life due to the way USA medicine is set up is totally harmful due to the implication of permanence. Harmful labeling goes beyond psych diagnosis, too. It can include our role among our peers, such as “class clown,” “class fat kid,” “nerd,” “klutz,” “retarded,” and even “shy.” Used negatively, we get trapped. We can replace with positive labels such as “artist,” “hard worker,” or “devoted friend.” While these labels do lead to assumptions, they aren’t used to socially limit a person.
Madmom, I have a chapter on mutism in my published memoir. The entire first section is titled, “Silence.”
Really great and powerful post, Jeanene. I very much appreciate the passion for life which you exemplify and articulate so powerfully.
There is a lot on which to comment, here, but I’m afraid I’d write a dissertation were I to really let myself go with it. I relate to so much of what you say, especially in the direction of rewriting our stories and defining who we are based on our own merit and ever-evolving sense of self, not by some dualistic and random social standard, based on an illusory sense of ‘sanity’ thanks to the purposeful distortions of some very greedy and not very conscientious people (at least that’s my version of our ‘sick society’). To me, that is our path of healing, specifically, when we take back that power which is rightfully ours to begin with. (I think getting to the ‘root’ of the issue would be to recognize when it is we started giving that power to others to define who we are; healing would be reversing that trend, imo).
I do want to comment, however, on this one passage really stood out to me:
“Now that I am outside that treatment system, when I intentionally hurt myself — whether it’s through self-harm or anorexia — I become an unwitting collaborator in my oppression. In effect I affirm, by such acts, society’s ostracizing of me. I let the powerful people who say I’m “less-than” win; through such behaviors I agree with them, even if I don’t realize it at the time.”
This is such a powerful and key thing to recognize, really radical ownership, which I admire and respect a great deal.
I had the same epiphany. Once I owned how I was prompting the responses I most hated and which made me feel completely misunderstood, not seen, demeaned, stigmatized etc., I began to work on my own energy, beliefs, patterns, and habits, making sure that what I put out was the best I could do, from the heart, and always aiming to do better, more and more in my loving heart. After all, our own energy comes back to us, so if we want kindness, understanding, fairness, justice, and social well-being, then we have to achieve this within ourselves, to ourselves, and extend it to others.
Thank you for this beautiful piece. Great way to end the week. And congrats on your very brave and diligent work.
Thank you, Alex! So much of what you say resonates with me right now, as I try to work through an anger that has been consuming me for too long, and toward inner peace – accepting that some peoples’ views or prejudices will never change, some of my personal circumstances won’t change, no matter what I write, how hard I work, what degree of health I achieve, etcetera. Your point about trying to find peace within and extend kindness outward is a particular focus of mine now. Because for a long time I have, honestly, not been doing that. I’ve expressed my anger in ways which are hurtful to not only myself but others. And I feel very bad (and ashamed) when I act out in such ways. We have enough bad on this earth and it is so wasteful to add any more to it. And it always feels better to do good anyways, of course (it’s another form of empowerment, I think)… I think the self-compassion piece is also important and key to enabling loving kindness toward others and the world at large — it is hard for me to extend compassion to myself, since I am prone to deeming myself a failure at life; prone to self-hate on a variety of levels… Another issue I struggle with are “OCD”-ish behaviors which can take up many hours. And so I often feel I am wasting what valued time on earth I have; and wasting space when I could be helping others, or writing… But I digress. I just wanted to thank you as well for yet another thoughtful comment, am SO glad you could relate to it, and thank you for the kind words about my writing. (“Beautiful” as applied to anything I write is a precious word for me). The validation of both my experience and my writing helps immensely.
Wow, you continue to speak to my own feelings. I also had waves of guilt/shame for how I may have impacted the environment negatively with my own anger, and negativity in general. I’ve worked on my self-compassion here by reminding myself that we’re all on a path of learning and growing, to give ourselves that learning curve. It’s hard to awaken to our own foibles (which we ALL have!), but once we do, these are golden healing opportunities, and they leap us forward toward our emotional freedom. So much wisdom comes to light along the way, I think it’s a truly remarkable process of transformation.
I also think it’s truly amazing soul growth to work on that delicate balance of having our anger and overall authenticity, while learning to be PROductive with it, rather than DEstructive.
And speaking of soul growth, I heard this recently: when we are on a soul growth path, which is our path to inner peace, then will more than likely feel like a “failure” and look like one to ourselves if we are measuring ourselves by the standards of a sick society, as this society would definitely cast aspersions on individual empowerment. A sick society wants everyone controlled, so they must be predictable and clones of each other.
Members of a sick society make up shaming accusations, shun, demean, shame, guilt, embarrass, humiliate, etc. These are tools of emotional manipulation for the purpose of control, which we internalize until we wake up to it, then we can free ourselves from this, and separate from it. I woke up to a lot of judgment around me just for doing my life my way, completely self-resourceful, from which I walked away without any hesitation, once I realized how draining this is to our energy.
I had the exact same feelings of failure for years (still have to swat it away like a gnat on occasion, but that voice really has no power any longer, we can, indeed, diminish it over time), even though I was working, producing, creating, and moving forward on all counts. I was invalidated quite a bit as I was healing, which made it a bit more of a rough ride than it needed to be, but at the same time, it served an important purpose: to quell those very same voices I had internalized, and disempower them altogether.
This is the behavior I have a hard time grasping and accepting in others, when people invalidate and ridicule others while they are obviously on a path of healing. And when it comes from the ‘peer support,’ it’s particularly disheartening.
I was diligent and transparent as I was re-writing my entire life out of necessity, and my process shook up a lot of people around me, as our own healing can light up the shadow of others who are not awakened. Not everyone was thrown by my healing, however, and could get that a process was occurring–even though they knew nothing about what I was experiencing–and supported me lovingly throughout, and these remain my circle of friends to this day.
I’ve even managed to manifest a pretty blissful life, after my lengthy dark night of the soul filled with self-harm, self-punishment. and all sorts of oppressive stigma, both internal and external.
With hard inner work and focus, I found my self-compassion, inner peace, and forgiveness of everything, simply so I could move on from all those internal splits. I live very humbly, peaceably, and fulfilled, but by society’s standards, I am not a rousing success at anything. Except for one thing: I am free, and as a result, quite grounded and happy with myself now. So why would I measure myself by standards that would have me judge myself negatively for not buying into its illusions and simply for following my truth path, fulfilling to me? No thanks!
Great, great stuff, Jeanene. Personally, I think this is the way out. At least, that was the end result for me, going by exactly what you are saying.
I wanted to clarify specifically what I mean by ‘personally, I think this is the way out’–meaning that in my experience, profoundly self-compassionate ownership was my way out of confusion/dark night to clarity and the light at the end of that particular tunnel. In shot, I was finally able to integrate the entirety of my experience that went on for decades one way or another, and create a complete and coherent story that works for me, brings me right into present time, and the story continues from here, unfolding from moment to moment.
I learned this largely doing chakra work, btw, which was awakening to me on many levels, but I know everyone has their way of going about their personal growth and healing.
But overall, I think this kind of neutral ownership puts us in our power, because then we can perceive where our control is over our experience. That is where we find peace of mind and experience self-synchronicity. This ripples outward, like energy.
I would wholeheartedly agree, Alex and Jeanene. We will encounter naysayers, or at least that’s the word I use to describe those that invalidate. I know now that the mojority have good intentions. For instance, these treatment centers for eating disorders are filled with so much baloney concepts. I know some even lie to patients. We were all such an oppressed bunch. Those that are still in that revolving door are by all means unaware of the deception. Truth is, I do hear the tail end of the lies being passed around regarding myself and my writing. It’s not pretty. I worked my butt off on a human rights case that I won, not for myself, for the sake of other patients. I have continued to write about my experiences. All that got twisted around to “Human rights are trivial. Don’t listen to Julie because she’s against recovery. If you read her works you will be triggered into a relapse.” Very few patients broke away from this mentality, and I cannot blame the patients on a whole, but the situation itself. Nothing gives me more joy than when a patient or former patient contacts me and says, “I gave you a chance rather than believe what I heard. I’m so glad. I found out you were right all along.” And even more joyful, “Your writing has helped me so much.” I feel fulfilled when I hear that. It means so much more than a paycheck. I went through a time of unbearable loneliness until I found that it wasn’t lack of people in my life that was the problem. I don’t think loneliness comes from being alone nor having very few friends. I think it comes from repeated social rejection. I found that if I freed myself so that I could keep doing what comes naturally to me, without fear of further incarceration, the naysayers backed off.
I am still seeking community. I am not desperately or even actively seeking it, but hoping someday I can feel at home with other humans, or a human. A partner would be awesome, or a small group of accepting people that I had a few things in common with. I figure that will happen and that I need to stop worrying. Mostly, I want to be understood. That, I hope, will happen in time. We are all still undoing what never should have been done in the first place. From what I have observed, everyone undoes differently. That’s cool, huh?
“We are all still undoing what never should have been done in the first place. From what I have observed, everyone undoes differently. That’s cool, huh?”
Big resounding yes, Julie. This is all pioneering stuff, discovering new healing and perspectives as we go, how we come off the drugs, take leaps of faith, self-heal, and create our own healing paths away from the norm, etc. All these shifting perspectives, which, I feel is how reality changes, when we perceive it differently.
We’re all sharing our stories of awakening from traumatic oppression, betrayal, social abuse, etc. And I think the key word here is ‘awakening.’ There are going to be bumps in that process, rebirth and transformation can get messy, but that’s part of it, how we wake up and move into our power. It’s a mega-process, with lots of tangents. We keep going.
There’s as much diversity in healing and awakening as there are people on the planet. How we share our paths with each other can be so enlightening to us all.
There seems to be a common theme going now, however, that it can feel unsafe and we can feel unsupported by our peers, for whatever reason. Something of which we can all be mindful, I think. After all, we’re trying to stop social abuse, not perpetuate it. It’s human to be triggered, but we can be aware of what we do with that energy. There are choices, here, and always room for refinement.
I think it’s VERY cool how each of us chooses to undo ourselves from all that garbage and move into a new self. Collectively, it’s a tapestry of energy, creating itself at present. To me, personally, it’s more of an art than a science at this point, as this is a historic first, I believe. At least in this field, there is a mass awakening going on. That’s a start!
Thanks for this blog, Jeanene. It has been *incredibly* helpful to my own clarity. I get frustrated and angry like everyone else about the atrocities that are still occurring in the mental health arenas that are seriously draining our society and world; and I think there are many ways to address them and improve the world in which we live, in our own ways, and I think many of us are doing this, again, in our own ways, each of us different aspects of the whole.
Overall, though, thanks to these exchanges on this blog, I do feel more optimistic that change is occurring. Indeed, it’s helped to be sharing here and hearing where others have come from in their stories of self-discovery.
I apologize for going on and on with my own story. Bad etiquette. Your passion and articulation was so inspiring it brought up a lot for me and I temporarily lost my manners and my brakes. I asked The moderator to remove my long post but I see that is not the standard solution for such faux pas.
Please don’t apologize! I am SO happy if my story helped enable you to voice your own story! I think the “personal stories,” section editor might be interested in a submission from you. I am interested myself in your experience, I just haven’t had the time to fully review all of yours & others’, subsequent comments, due to their length and me having other things to attend to as well, the past couple days. I really feel for you, and admire your courage in trying to help your daughter, and fight for better alternatives, as well as immensely respect your understanding of her experience. That is not always the case with parents. I am lucky in that my parents have come to be as supportive and understanding as you. Your daughter is lucky to have you on her side. I encourage you to submit your own “personal story” article as I think it could help you and your daughter a lot. And, it’s always (as I write in my article), empowering to write about one’s experience.
I think it is revealing per the quality and substance of your blog that it is resulting in a great number of lengthy responses. One poster told me dhe wroye an article about mutism! Wow! Your article is rich and layered providing many points of entry for a wide range of individuals whose experience of the mental health system is different but similar in the sense that the common denominator that ties us together is that we all know how it feels to have our voices silenced or ignored; we all understand how it feels to be lied to or betrayed.
Yes, perfect distillation, this is the network of factors that is the common denominator. What seems to vary a great deal is how each of us responds to these experiences, what we learn and how we grow and evolve as human beings. That’s where we become individuated.
Very well-put; another profound point 🙂
I thank both madmom and Alex for your comments – you are right that we have a common denominator — and in that commonality we have power – by coming together to speak out about such injustices. That’s why, as I’ve said in another comment, I’m so grateful for Mad in America. Thank you also, madmom, for your kind words about my story – again, I am extremely humbled if it encourages anyone to also speak of their own experience. I did just try to read your first comment – but was only able to get part-way through it – your daughter (and family’s) story. I just want to say you have an incredible, incredible voice and are so very eloquent yourself! I am completely blown away at how you are able to view your daughter in a way opposite of the majority of mental health professionals – how you can see through their labels to the profoundly unique, gifted individual she is. You should definitely write more and get your story out! I am also wondering if you’ve read Ethan Watters’ “Crazy Like Us” – he looks at how “mental illness” is viewed in other cultures. I found the chapter on schizophrenia particularly helpful – in that in places like Zanzibar they don’t see that “illness” as we do in the Western world. At any rate I will try to finish reading your comments when I get a chance.
I forgot that I wanted to add — much credit should go to “personal stories” editor Emmeline Mead, who was instrumental in helping turn the first draft of my submission into the shorter, better-flowing article which resulted above. She is very good at what she does!
Jeanene, I don’t know if I mentioned on here that a very good friend of mine told me shortly after I was abused while inpatient in 2013, “No one cares about what you write about. Why do you bother?” I didn’t tell him off right then. I waited, but he kept on saying they hadn’t abused me. I told him, “You weren’t there. How can you draw this conclusion?” I am sure he regrets our horrible conversation at the end, when he accused me over and over, claiming that if he had his way, he’d see to it that the hospital did the same thing over again.
Also, just because we don’t earn paychecks doesn’t make what we do less valuable. If anything, since we do this out of passion, not paycheck, it is even more valuable. I’ve had people tell me, “Why don’t you give up writing and do something more worthwhile.” Okay, let’s tell Einstein he can’t be a scientist and to do something more productive. Let’s tell Lucille Ball that her acting was wasteful and she should have worked in a grocery store. Let’s all go to our doctors and tell them to give it all up. A shrink once told me I had a “useless master’s degree.” I guess his PhD was doubly useless. I’ve also heard from a number of people, “Who cares if your book didn’t sell? Why do you care what others think?” We writers know that visibility is important, validation is important. There are plenty of people who write very well but won’t take it to the next step, which is submitting for publication. Much as I hate the business end of writing I do feel that visibility is important. Works of art are meant to be shared. What ever happened to those trees that fell that no one heard? I can understand your devastation after there was no response from the eating disorders riff raff. They don’t talk to me, either.