On the Concept of “Mental Illness,” the Harms of Psychiatric Labeling, and the Most Unrecognized, Oppressed Minority Group in America

by Jeanene Harlick | November 6, 2014 10:15 am

 

Over the past thirty years, we Americans have been industriously exporting our ideas about mental illness… [And] how a people in a culture think about mental illnesses—how they categorize and prioritize the symptoms, attempt to heal them, and set expectations for their course and outcome—influences the diseases themselves. In teaching the rest of the world to think like us, we have been, for better and worse, homogenizing the way the world goes mad… In the end, all mental illnesses, including such seemingly obvious categories such as depression, PTSD, and even schizophrenia, are every bit as shaped and influenced by cultural beliefs and expectations as hysterical leg paralysis, or the vapors, or zar, or any other mental illness ever experienced in the history of human madness.”

-ETHAN WATTERS, from Crazy Like Us: The Globalization of the American Psyche 

As some of you know, I was profiled last week, along with two other “inspiring creatives,” by MATTERNCO, where I wrote about how I want to help change the way society views and treats the “mentally ill.” One quote in particular spurred a rather heated response from a friend. What I said was:

I want to show that ‘mental illness’ has a lot more to do with a sick society than a sick mind… Just as there are different shades of skin color in our society, so there are different varieties of minds. This does not diminish the fact that some people… [are] in [intense] psychological pain, and can hurt themselves as they try to cope with their invisible battle. And that these people – including me – need help. But society also needs to not treat us as third-class citizens lacking the insight, intelligence, or capacity to still fully function and have a voice in society.” 

Responded my friend: 

I have to admit that I was shocked to read that you don’t believe that mental illness exists!  Do you not believe that PTSD or schizophrenia are illnesses? From my vantage point as a [Deputy] D.A. I have seen so many cases where people hurt or kill people in the most horrific ways because they felt compelled to do so by voices or paranoia– wouldn’t you say this is per se mental illness?

First, with all due respect to my friend, I’m not quite sure how he/she interpreted my words to imply I don’t believe some people in the world struggle with various forms of mental distress of a serious and uncontrollable nature. Particularly since I happen to be one of these people. What I was trying to state – maybe not as effectively as I thought – is that while there are some biological (hence uncontrollable) roots to “mental illness,” society is just as much a culprit. What most people don’t realize is that how we identify, label and talk about mental health throughout the world is significantly culturally scripted. As psychiatric anthropologist Juli McGruder (more on her to come) put it: “What we say about mental illness reveals what we value and what we fear.”And in America, in particular, what we say about mental illness often results in the stigmatization, dehumanization, and oppression of the “mentally ill.” The mentally ill are the last minority group it’s completely ok to discriminate against – and nobody even realizes it, much less acknowledges it.

As I made clear – or so I thought – by my constant use of quotes surrounding the term “mental illness,” is that my problem is with how we label and define – not the existence of – mental illness. In other words, it is a primary mission of my writing to change the way we talk – and therefore view – those unfortunate enough to be permanently branded as “mentally ill” in America. Particularly the 6 percent of us who experience chronic and severe “mental illness,” and therefore bear the primary burden of the prejudice associated with that label.

I find it particularly unsettling that my friend – who, please don’t get me wrong, is a very good, supportive and compassionate friend, has the best of intentions, and as a deputy D.A. has seen a lot of horror that I have not – immediately jumped on the “The-mentally-ill-are-more-prone-to-commit-extreme-violence” bandwagon. This is one of the most incorrect and damaging stereotypes my minority group is afflicted with today. In fact, people battling mental health issues are no more likely to be violent than anyone else, according to the U.S. Department of Health and Human Services (you can visit this fact sheet on mentalhealth.gov to see this stat, as well as the truth behind other common myths surrounding mental disorders). Only 3 – 5 percent of violent acts are associated with people with severe mental illness. Actually, it’s the opposite that is true – people with severe mental illness are more than ten times likely to be victims of violent crime – rather than commit them.

Whenever a violent act such as the recent school shootings in Seattle occur, the first thing you hear from the media is, “What was wrong with this kid? We need more mental health resources! What were the signs? What mental disorder did this kid have?” Everyone was befuddled, of course, by Seattle’s particular scenario – lo and behold, a perfectly “normal” kid, it appears, committed this act. Apart from the fact that this supports the statistic I just noted above, it also highlights what the media never asks but should be asking: maybe it was a toxic society and its impossible standards – not a defective brain – that tipped this boy over the edge. I’m not justifying what he did, of course. I’m just saying, why is it America where mass school shootings occur now, on almost a monthly basis – and not anywhere else?

And then my friend also had to bring up the “schizophrenia” argument. Well, that was a bad call. Because guess what? It turns out I happen to know a lot about just how “relative” the diagnosis and behaviors of those labeled “schizophrenic” is, and that how they fare over the long-term is also significantly influenced by culture throughout the world. 

The reason I know this is – unlike most people who have the platform upon which to frame the discourse about mental illness in America today – I’ve done A LOT of research on the labeling,

misconceptions, and true genesis and nature of “mental illness” – both in graduate school and beyond. My discussion here is based on sources such as 1) Possibly the most famous, cross-cultural, study in psychiatry’s history – the World Health Organization’s 25-year global tracking of individuals with schizophrenia, which found that people diagnosed with schizophrenia in poor or developing countries do far better over time than schizophrenics in Western, industrialized nations, 2) The large body of research conducted by “labeling theorists” such as Erving Goffman, Patrick Corrigan, Petra Kleinlein, Gerald O’Brian, Anthony Taylor and Palmer Reg Orovwuje, and 3) Ethan Watters’ magnificently-researched, 2010 book, Crazy Like Us  – which initially received a decent amount of notice by media (including an interview on NPR’s “Fresh Air”) but for some unfathomable reason has been severely overlooked ever since. I consider it one of the most important books in the field mental health today.

(You can read an excerpt of the book’s intro here, from the Jan. 8, 2010 issue of the New York Times Magazine). 

So let’s start this discussion with Watters’ chapter on schizophrenia, because his fascinating findings bear implications for how we view and treat any “mental illness” today. I could talk at length about this chapter’s research (his book also includes chapters on anorexia, PTSD, and depression) but will try to limit myself to briefly summarizing Watters’ chapter on schizophrenia here. (I really encourage you to get his book if you are interested in the role culture plays in “mental illness,” as my summary is far from adequate. Crazy Like Us includes chapters on anorexia, PTSD, and depression as well).

What Watters found, by spending time with the aforementioned McGruder, a cultural anthropologist who moved to Zanzibar years ago to study and solve the schizophrenia mental health conundrum, was this: 1) While Western psychologists almost-uniformly attribute schizophrenia’s causes to the purely biologic – abnormalities in brain structure, biochemistry, or genes – hence dooming those diagnosed with it to poor outcomes, there are in fact too many variations in experiences approximating schizophrenia globally to reduce its causes to the purely biologic. And 2) Watters learned that how families, treatment providers and local culture understand, view and explain a “schizophrenic’s” experience, and how they talk about and treat those family members as a result, plays a huge role in how the illness impacts a person’s behaviors and self-conception and, therefore, their long-term prognosis.

In Zanzibar, for example, McGruder found that most of its population, including its doctors, had not yet been contaminated (my wording) by the Western view that schizophrenia is a purely biological disease from which there is no escape. Zanzibar people are more likely to attribute the experience of schizophrenia instead to spirit possession or the “permeability of the human consciousness by magical forces,” Watters wrote. Spirit possession in Zanzibar is viewed as a relativiely common experience which everyone experiences at some point in their lives. For example, said Amina, a mother whose household included both an ex-husband and daughter (Kimwana) with schizophrenia, we all have “creatures in our heads.” Those with schizophrenia were seen to simply experience spirit possession more often and to a more extreme degree than others. Spirits were also known to to be rude and to violate social norms; thus when Kimwana acted out, it was seen as the spirit acting out, rather than her behaving badly. Amina harbored no judgment or frustration toward her daughter’s delusions, and never pressured Kimwana to display “normal” behaviors. She was not stigmatized, remained just as much a part of the family unit as any other member, and was allowed to fluctuate back and forth between health and periods of illness: “As such, Kimwana felt little pressure to self-identify as someone with a permanent mental illness. This stood in contrast with the diagnosis of schizophrenia as McGruder knew it was used in the West. There the diagnosis carries the assumption of a chronic condition, one that often comes to define a person,” wrote Watters.

To Watters Zanzibar families provided a quintessential example of how merely the way in which a culture names a disease can impact how the “disease” plays out in the person themselves. Mexican-Americans studied in Southern California, for example, have a way of labeling experiences approximating schizophrenia – called nervios – which keeps the family member stigma-free. Nervios, a “catchcall diagnosis for feelings of disquiet or distress” in that culture, does not bring with it the negative connotations associated with schizophrenia; it is viewed as something all people experience, in milder forms, at one time or another. It is also viewed as a transitory state. As one researcher put it, the Mexican-American families studied view individuals with “schizophrenia” as simply “just like us only more so.” Therefore, as in Zanzibar, the nervios framework kept the individual within the family and social group, as opposed to setting him/her apart as an “other” with a lower status level.

The normalizing frameworks families used by the above two culture lies in stark contrast to how families in industrialized Western societies – particularly Anglo-American families – view their schizophrenic members. Western families are more prone to view the individual as an ‘other” and to show what’s known in psycho-lingo as “high expressed emotion (EE)”. High EE, demonstrated by such things as over-intrusiveness into a family member’s life, expressions of self-sacrifice or burden, etc., has been associated in research studies with poorer outcomes for those with mental illness. 

Watters attributes the difference to the way in which families across cultures view and treat schizophrenic members to the ascendance of the biomedical model – also referred to as  simply the “medical model” as well as “biological reductionism” by those at odds with it – of mental illness. Having evolved over the past fifty years, the biomedical model, which now reigns throughout psychiatry, views mental illness primarily as a “brain disease” resulting from abnormalities in genes, brain structure or biochemistry.

When Western researchers started positing this theory, thanks to new technology allowing them to map brain functioning and DNA, they thought it would help decrease stigma toward the mentally ill, by removing the sufferer from blame. If “mental illness” is due to some inherent physiological abnormality, then society can’t blame a person’s behavior or inability to achieve full recovery on things like character weakness or life choices, so the thinking went.

Unfortunately, the opposite occurred. Research conducted throughout the globe has shown that over the past four decades, in regions where the biomedical model has gained ascendance, negative attitudes toward the mentally ill have actually significantly increased, including heightened public fear of the mentally ill and greater social ostracism. Why? Because the implication underlying the biomedical model is that of a person whose brain is so permanently broken and abnormal he or she is always unstable, unpredictable, unhealthy, and dangerous, Watters explained.

In other words, the biomedical model doesn’t allow for the more accepting view Kimwana’s family had: of a daughter who fluctuated in and out of periods of health (normalcy) and suffering. Wrote professor Sheila Mehta of Auburn University, who has conducted studies and experiments on how the biomedical view influences Westerners’ perception of mental illness: “We may actually treat people more harshly when their problem is described in disease terms… We say we are being kind but our actions suggest otherwise… Viewing those with mental disorders as diseased sets them apart and may lead to our perceiving them as… almost a different species.”

Watters may not have realized his observation about how central a role culture’s naming and defining of an illness plays in individuals’ prognosis was touching on a field of recent research known as “labeling theory.” It grew out of postmodern and feminist lines of social psychological research that started being explored in the 20th century, pioneered by such academics as Erving Goffman, Charles Horton Cooley, Carol Gilligan, Herbert Blumer and Thomas Szasz. These researchers developed theories like symbolic interactionism and social constructionism that proposed new ideas about how people develop a sense of self, and where “mental health” falls into that. Szasz, the famous father of anti-psychiatry, denounced the labeling of mental disorders, calling it a political act by those in power: An attempt to exert social control over people who threatened them by branding nonconformists with a “spoiled identity.” One well-known example of this is how early women suffragists were accused of suffering from “nervesickness” and other mental ailments in the 19th century by men who opposed their fight for civil rights. Szasz suggested describing people with “mental disorders” as struggling with “problems in living” instead.

In the past decade, new research in labeling theory has revealed troubling evidence that the way we name and define mental disorders in Western psychology can cause even more harm than the illness itself. The aforementioned Patrick Corrigan and Petra Kleinman, for example, have demonstrated the stigma the mentally ill experience from psychiatric labeling is often internalized, causing low self-esteem, self-prejudice and feelings of worthlessness. Anthony Taylor and Palmer Reg Orovwuje’s studies have found the rejection and humiliation the psychiatrically impaired experience is so strong it amounts to a “second illness.” A landmark study by Jo Phelan, Bruce Link and colleagues, in the 1980’s, showed that simply being labeled as chronically “mentally ill” had twice as large an impact on an individual’s income and employment than the actual symptoms themselves. 

Labeling theorists say what happens is, the term “mentally ill” becomes in effect a person’s “master status,” leading to a self-fulfilling prophecy in which the person buys into the label and starts to limit him or herself by socially isolating, ceasing to apply for jobs, and conforming to additional expectations associated with their label. A viscous cycle ensues that ironically only ends up fueling psychiatric practitioners’ belief they correctly nailed the person’s alleged “mental illness” in the first place. The label and its stigma, therefore – not the alleged disorder – is what ends up sustaining the illness, according to these researchers.

After reading stuff like this, I start to wonder, am I inherently wired to hate myself, to constantly interpret my life in comparison to others’ negatively, as those close to me say – or is it actually the other way around. Is it perhaps Western psychology’s form of diagnosis and labeling – and the entrenched, societal stigma it’s left in the American mindset in its wake – actually, that has taught me to hate myself as much as I do?

That biological reductionism counterintuitively exacerbates stereotypes about the mentally ill – even by practitioners themselves – has certainly proven true for me. The countless treatment providers who’ve tried to “fix” me over the past decade have, for the most part, blindly embraced the gene/brain abnormality theory. And while I have no doubt they mean well, and they try to make clients like me feel better by saying things like “it’s not our fault” – the way they’ve treated me in practice has done nothing but exacerbate my “internalized stigma.” Always, when I’ve struggled at a certain point while in a treatment center, or months after discharge relapsed yet again, practitioners have never stopped to consider whether the problem perhaps has more to do with them, not me. Whether their failure to see me as a culturally-embedded person – rather than an illness – and reconsider their treatment approach as a result, might be a problem. On the contrary, they continued to prescribe me the same regimented, authoritarian, debasing and outmoded form of treatment they’ve been prescribing – in their cookie cutter approach – to eating disorder patients, no matter what their age or background, for years.

Despite having attended several residential and day treatment programs over the past decade, and doing every fu—ing thing – no matter how humiliating or traumatizing it’s been – these programs have asked of me, it’s never worked. And invariably the

therapists and clinical directors there always attribute this to the fact that either 1) I didn’t try hard enough, more commonly known as the “you haven’t fully surrendered” line (and if anybody ever tries to say that to me again, I will literally smack them in the face) or 2) (While they won’t say this) My brain isn’t capable of being fixed. Never once have I heard a treatment center consider the fact that maybe Western psychiatry’s (and therefore American culture’s) failure to reconceptualize “mental illness” maybe plays a role in my failure to achieve long-term health, that maybe the whole system of psychological diagnosis and labeling they subscribe to is fu—up in the first place.

And when I think about it, despite all these therapists’ purported belief in the biomedical model, I really don’t think they even believe it, at the subconscious level – probably due largely to the individualistic, pick-youserlf-up-from-your-bootstraps American mores we’ve all raised with and steeped in. What their actions and words have – if you read between the lines – said to me, over and over again – is the problem is me, my weak character, my poor work ethic, etc., not some inherent biological mutation I have no control over. You readers may find this hard to believe. But if you’re ever unfortunate enough to have to attend one of these centers, you’ll see what I mean.

How does all the stigma and entrenched, biomedical mindsets play out in real life? While I can go on at length about the various forms of oppression the “mentally ill” in America face. But I’ll try to save most of that for another article. For now, I’ll just briefly state that the aformentioned researchers have amply demonstrated the mentally ill remain one of the most disadvantaged and oppressed minorities in this nation. Decades of research has shown they experience extreme prejudice from employers, landlords, government institutions, medical professionals and counseling professionals themselves. While most chronically, mentally ill individuals wish to work to some degree, only 15 percent are able to obtain employment.  A comprehensive review of more than 1,200 American With Disabilities Act cases filed by the mentally ill and which made it to federal appellate court showed that employers won 95.7 percent of the time (The analysis, by University of Miami law professor Susan Stefan, was published in the Alabama Law Review in 2000).The mentally ill also experience greater economic hardship, social isolation and social restrictions than almost any other minority group. While other forms of identity-based inequality (such as being “black” or “gay”) have made huge gains over the past 50 years, the “mentally ill” have reaped comparable rights. Rarely is prejudice toward us even acknowledged when we are made fun of, or made the scapegoat for some social ill. The prejudice toward the mentally ill is so entrenched and subconscious that even the most open-minded and tolerant of those in power, or those with celebrity, don’t even realize they’re buying into this form of prejudice when they’re doing it.

And what does all the above look like, when translated to the individual level? It looks like me. Ten years ago, I was a high-functioning journalist grappling with a variety of mental health issues, including an eating disorder. I entered a residential treatment program in a proactive attempt to stop things before the spiraled out of control. I entered the system – a system I was led to believe was my only route to “recovery” – a system that, on the contrary, turned out to be the beginning of my end.

Thus ensued 10 years of me cycling in and out of treatment centers, as I was brainwashed about the names and sources of my “disorders” and the rigidly-defined solution for solving them.

A little more than a year ago, I left my last treatment center – where, despite fully restoring my weight and mental stability after about three months, I was forced to stay an additional eight, as the center’s practitioners could never seem to agree I was “ready” to return to reality. Finally, in July 2013, I discharged myself “against medical advice” because I saw the debasing treatment the center subjected me to, on a daily basis, was only reversing the gains I had made, and setting me up for failure upon return home.

When I returned to the Bay area I set about trying to do the only thing I knew would really give me a chance at maintaining my restored weight and mental stability: finding a fulfilling job that not only related to my passions and provided me a sense of purpose in this world again, but that also allowed me to finally regain financial stability and self-sufficiency. But I had a ten-year job gap, was 40 years old, and no prospective employer would give me the time of day. Particularly since, if any of them even lingered over my resume, and then Googled my name, all that showed up were news articles – accompanied by emaciated photos of me – related to a landmark lawsuit I won bringing mental health parity to California health insurance. News articles which pretty much shouted out, from the glare of the computer screen, my status as one of those CRAZY ANOREXICS, one of the most stigmatized mental illnesses in the U.S.

In November, by pure luck – i.e., a sister’s connections – I obtained an excellent temp job in communications at Stanford University. Finally, I was high-functioning again, exulting in my return to the workforce, and while I can’t say I was in “full recovery” (I’m not sure “recovery,” in traditional psychiatry’s sense of the word, is achievable for me – but that’s a complex topic for another article), my OCD and eating disorder behaviors were mild enough to allow me to finally start living a relatively “normal,” fulfilling life.

I delved into the job – which involved, among other things, helping fill in for the department’s media relations director (then on maternity leave) – with enthusiasm and gusto, proved myself worthy of the job’s media-sensitive responsibilities, and worked there for four, very productive months. My supervisors praised the high quality and thoroughness of my work, and gave me increasingly more responsibility.

I felt I had value again. I felt capable, for the first time in ten years.And then, the job ended. It had looked almost-certain I had nothing to fear – a writing position had opened up in another unit of the department; I breezed through an excellent interview. But it turns out I never had a chance. There was an institutional shake-up going on at the time, and they gave the job to someone internal so she wouldn’t lose her job.While I tried earnestly to find a job for the next 2 – 3 months, after failing to secure even another temp job, I gave up. I knew nobody was ever going to hire me; I mean, who was I kidding? Left alone in my studio apartment for days on end, not talking to another living soul, my OCD, eating disorder behaviors, and depression progressively worsened – and my hope evaporated – to the point where now (as everyone knows) I can barely function on a day-to-day basis.What America’s misinformed prejudice and fear toward the mentally ill looks like, in very concrete terms, is a 40-year-old, perfectly capable writer who can’t even get hired as a barista (I’ve tried, several times). A woman who hates herself and her life so much – its lack of purpose; that she not only helps no one, but burdens many – that she spent the majority of last week in her pajamas sleeping in the sanctuary of her dark closet and fantasizing about various ways she could kill herself. Except she doesn’t (and never will have) the courage to do so – which simply makes her hate herself all the more.

I never thought of myself as one of the “mentally ill” until 2004. I knew I had issues, I knew I had to address and deal with them. I knew I had “anorexia” – I had been saddled with that label in high school – but I refused to let it define me. I hid it from my colleagues, and most people not close to me probably thought I was rather “thin,” but never thought of me as simply ANOREXIC – as most do now.

I never thought of myself as a defective person, or a bad person until ten years ago, when I officially entered The System, was branded, and never escaped. I never thought of myself as “crazy.” Now “mentally ill,” “defective,” “crazy,”vand “morally bereft” are all I think of myself as.What Western society’s messed up psychology looks like in practice is a woman who has to pick and choose which bills she’ll pay and which she won’t each month, and a woman who would be homeless if it weren’t for the charity of her family. A woman who’s tired of not being able to afford simple things like a new paperback book (she only uses the library now), and had to sell more than half of her most beloved books a few months ago for a mere $25, so she could purchase a bit of food. It looks like someone who can’t do little things that most of you take for granted: replace the $15 Walgreens blowdryer that broke four months ago; indulge in the occasional cappuccinos she used to enjoy; or even get a fu–ing trim at Supercuts.

It looks like a woman who as of Nov. 27 – as always occurs at the end of the month – had $20 to last her until her Nov. 3 disability money arrived, and had to decide whether to spend that on toilet paper and toothpaste, or some minimal amount of food. And since she obviously can’t go without the former but has lots of experience going without the latter, the choice was obvious. This woman was hungry and would prefer to eat, but she really could NOT tolerate the utter humiliation and shame of asking her family for yet another hand-out, so she decided she’d go hungry – for real – instead. And hey, there were bonus points too! Maybe the not-eating-for-a-week would kill two birds with one stone. Maybe her heart would finally give the fu—out, and she could die after all.

It looks like a woman who by late Wednesday was so cognitively out-of-it, due to lack of food, she found herself spontaneously screaming at a stranger staring at her – because she felt the stranger was judging her wretched appearance and dented jalopy – as well as sending off a scathing, profanity-laced email to a big-wig, eating disorder researcher who had failed to respond to her interview request.

It’s a woman who had to swallow the last crumb of pride she possessed and ask for another financial hand-out last Thursday, so that she didn’t end up so food-deprived she landed in jail for doing something even stupider and more deranged than the above.

The stigma, labeling, misconceptions and mistreatment of the “mentally ill” looks like a woman who is starting to wonder whether she cares anymore about writing for a Web site that only a tiny handful of friends and family actually read. Because as much as she loves and appreciates the people who are listening, they’re not the ones who can get her a job or change The System. A system she wants to be taken seriously in – and isn’t – for once.

It’s a woman who has done a lot of research and studying about all of the above, but has heard so many stories about other people overcoming exponentially worse adversities – like horrific trauma, or cancer, truly wretched poverty, or more severe mental health struggles – that she knows, at root, she’s the one to blame in the end for her immoral, pathetic life and failure to simply turn things around.

A woman who when she does, on good days, find the will and ability to try and “work” and eat, is soon besieged by so many chains of thoughts detailing her failings & loneliness, down to the tiniest minutia, that she eventually returns to either drinking, or sleeping, or most often a lot of both, to shut it all out again.

I’m a 40-year-old woman who will likely die within the next decade – from either the eating disorder or suicide – because I am tired of fighting the battle in my head on top of the way society views me. I’m tired of lacking a job or purpose, tired of living with the constant pain that no man’s ever wanted me and that I’ll never have children, tired of missing a twin sister who has justifiably distanced herself, and tired of having no power to influence the conversation surrounding how we view and treat the “mentally ill” in Western industrialized society today.

I’m a woman for whom depression and hopelessness are becoming to feel more like a permanent state, rather than something which used to come and go. A woman who’s about an inch away from losing the last remnant of energy – but more importantly the desire – I used to have to keep fighting for a Voice and purpose in a world where nobody will listen, and nobody with hiring power thinks I have anything to offer.

I’m a woman who’s tired of shouting into a void, tired of being so tired, and who just wants to go to sleep. Forever.

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