The globalization of American style thought campaigns

I am confused by mental illness stigma campaign messaging.  I “get” human rights abuses, I “get” age and sex discrimination; there are legal recourses for these in many countries. I understand prejudice when we’re talking about discrimination, but anti-stigma campaigns are a different beast. Where are we going with mental illness anti-stigma campaigns, and why?  
These campaigns talk about “changing the conversation” about mental illness, which means, to my mind, at least, that they have an agenda to infiltrate minds. Anti-stigma campaigns aim to mold people’s thoughts to conform to the latest fashions and trends, and they encourage people to want to sign onboard, to be part of the “in” crowd and not a self-stigmatizing small minded misfit, a.k.a. a bigot. You want to be invited to the right parties? Check your ability to question the sense of what is happening at the door.
Anti-stigma campaigns are peculiarly American in origin, but adopted by many English speaking industrialized countries. Canada comes to mind, as there is less resistance there to American messaging  due to its geographic proximity and slavish desire to be invited to the noisy party going on right on its doorstep. Anti-stigma campaigns have heavy political undertones, and, with politics comes money. They should not go unchallenged, but they are extremely hard to find out what the real agenda or organization may be behind them. They appear to me to be essentially marketing gimmicks to rebrand thought in ways that benefit certain interests. Yes, in the case of mental illness anti-stigma campaigns, I’m heading in the direction of pointing a finger at pharma, without being able to get at solid evidence. (Please forgive me for not putting the requisite quotation marks around mental illness, a stigmatizing term if there ever was.)
What message are we supposed to take away from people wearing tee-shirts that say “bipolar” next to tee-shirts that says “sister”?  Or actress Glenn Close saying “schizophrenia, schizophrenia, schizophrenia, schizophrenia. See, it has no meaning?”  What would people in India, Thailand, France or South Africa take from this messaging? They would probably be confused. They may not have labels for their relatives. They’ve got their own understanding of mental illness, and, judging from the World Health Organization’s findings that recovery rates are much higher in the developing world than in Western industrialized countries, these people must be doing something right, stigma and all. 
On World Health Day (Thurs. 10 Oct.), I watched the documentary film Hidden Pictures, directed by, and narrated by, Delaney Ruston, M.D.  
From the official website:“Artistically crafted, with unforgettable characters, Hidden Pictures is unprecedented in it’s (sic) scope. The filmmaker, who grew up under the shadow of her dad’s mental illness, takes us on her journey to uncover personal stories in India, China, Africa, France, and the US. Moments of profound frustration and unparalleled compassion emerge. Ultimately we witness the incredible change that individuals such as actress Glenn Close are bringing about.”
I had trouble with this film on several levels, despite its offering some interesting glimpses into different countries’ mental health systems, and their shortcomings. In Thailand, a person can be locked up indefinitely on someone else’s say so, without legal recourse. That’s a human rights issue. In the East, face saving and respect for one’s elders can override human rights concerns. That’s an ingrained cultural issue. South Africans seek out the advice of traditional healers, with predictably mixed results. That’s cultural, too. In India, there is intense pressure not to divulge an illness because doing so has severe implications for marriage prospects. Culture, again. France has very well developed medical care and social systems, but unemployment is high, and it is especially difficult for anyone, who is out of work for several years to gain a foothold in the job market. That’s cultural, but also economic.
Glenn Close, who founded the Bring Change 2 Mind anti-stigma campaign, is a hint that the viewer of this documentary is about to be subjected to the export of a Westernized biochemical view of depression, bipolar disorder and schizophrenia in countries as diverse as India, Thailand, South Africa, and France. Bring Change 2 Mind’s mission is tailored to a pharma only approach, without having to say so: To end the stigma and discrimination surrounding mental illness through widely distributed Public Education Materials based on the latest scientific insights and measured for effectiveness. To act as a portal to a broad coalition of organizations that provide service, screening, information, support and treatment of mental illness.
There is more than a whiff of pharma in Hidden Pictures.

Delaney Ruston’s credibility problem in developing countries with their own cultural traditions, and better track record in overcoming mental illness, is that she is an American M.D., schooled in the biochemical model of the “disease,” Her medical training has taught her that people with schizophrenia who now seem “normal” must have been misdiagnosed! (It’s there in the film.) In one scene, Dr. Ruston, as the narrator, refers to “the best medical care” as we simultaneously see boxes of prescription drugs being put on a shelf.
Dr. Ruston has cultivated ties to celebrities like Close and former U.S. Senator Patrick Kennedy, who also appears in the film —red flag warnings that money, power and industry are trying to gain international respectability through the seemingly innocuous footage of a film about compassion and caring. The American style Ruston brings to the film has a Hallmark card feel to it (so do pharma ads), the narrator and her camera focusing on how alike we all are, no matter where we live. Well, yes, in many ways that’s true. I feel good about that, I don’t feel good about how scientifically speculative information about the biochemical nature of the major mental health problems is being spread through a stealth campaign called stigma.
A feel good scene shows middle school children in the International School in Delhi “overcoming stigma” by learning about mental illness and the brain. We see brain charts and a kid who hasn’t a clue that he is learning science that is merely wishful thinking at this stage, spouting the usual stuff about the biochemical nature of mental illness. The teacher takes an active, nurturing role in pushing the non-existent science. These carefully cultivated celebrity connections can open international doors, and not just for filmmakers.  I’ll bet a lot of the parents of the middle school kids work for pharmaceutical companies in Delhi.
The real life stories of people struggling with mental illness were interesting, don’t get me wrong, so from that viewpoint, it is forty minutes well spent. But, I do strongly suspect that there is a hidden agenda behind the hidden pictures. Getting people and organizations to talk about stigma is pharma’s social marketing technique. Superficially, it seems harmless, but it also seems very much about getting drugs to some of the world’s most populated countries.
See also Chaya Grossberg’s excellent article Is a Little Stigma Better Than None?

Making madness fun

Humanity has advanced, when it has advanced, not because it has been sober, responsible, and cautious, but because it has been playful, rebellious, and immature. ― Tom Robbins

Ron Unger writes about madness and play over at the Mad in America webzine. Don’t miss this one!  Madness these days is viewed in the same way as the Ladies Temperance Society viewed alcoholic beverages. We are “awfulizing it.” Let’s get others to lighten up and recognize that a little humor goes a long way. Laughter is often the best medicine and as for play:

Ron writes:

“Curiously, those convinced that the best way to reduce “stigma” is to portray madness as an “illness like any other” see it as part of their job to suppress any notion that there can be something fun about madness. For example, a NAMI page on stigma reduction contains the following paragraph:

Another triumph came in the field of advertising. Nestle’s line of Tasty, Tangy Taffy Bars featured wrappers bearing distorted cartoon faces of characters with names like “Psycho Sam,””Loony Jerry” and “Weird Wally.” Two alerts and even a letter from former First Lady Rosalynn Carter convinced Nestle to repackage the candies, minus the stigmatizing names and cartoons.

Of course, if madness is not an “illness like any other,” if it is more of a human thing, very multifaceted and containing potential for growth and change as well as hazards, then it might be a good thing to notice the fun side of madness; to notice not just the dangers, but also how it might be sometimes be liberating or even just amusing.”

Not so Far From the Tree

I’ve just started reading Far From the Tree, by Andrew Solomon. My friend, Lisa, who will be a first time grandmother in the next few weeks, handed it over to me because it wasn’t the kind of bedtime story a soon-to-be grandmother should be reading. Solomon’s book is about parents coming to grips with their child’s deafness, dwarfism, gayness, schizophrenia, etc.  Lisa said every chapter seemed to have an interview with a mother who said, “all seemed fine . . . until the baby was born.”

Does the apple fall far from the tree?  I don’t believe it does. Perhaps it’s my experience in Family Constellation Therapy that tells me that family inheritance is social and subtle, not all genetic. Andrew Solomon is gay, and in the forward to the book, he says something that is quite astonishing to me. He writes that most parents of gays are straight, and sexual identity gets picked up in the exterior environment with which the child comes into contact. Wait, wait! Sexuality, like other character traits, is on a spectrum. Not all men and women are robust representatives of their sexual assignment. Many people who have what we might think of as latent homosexual tendencies, get married and have children.  Sex may not be a big part of the relationship, other than feeling a societal duty to procreate. The child, will, however, observe, and draw a sexual identity

So, it’s telling that the author would portray schizophrenia as a brain disease,and pooh pooh the environmental influence almost altogether. He has been indoctrinated in the E. Fuller Torrey approach that is so discredited by activists in the psychiatric rights community.  Who did he interview for the schizophrenia chapter? The misery crowd. Mainly elderly parents of middle aged children who appear not to have made any attempt to understand their children in the context of a greater truths. The book description poses the question: “All parenting turns on a crucial question: to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves.” By and large, the parents and families is the schizophrenia chapter appear to have neither accepted nor encouraged.

Had these parents shown more empathy and understanding, perhaps these stories would be different. Many tossed out their children to the streets, or group homes. Some chose not to speak to their child for years. (This sounds like how homosexuals were treated in years past, and in many cultures today.) They term their own progeny “crazy” and describe all the awful things their child has done to them. Today, would a parent be so derogatory towards a gay son or daughter? No, in western cultures, at least, there has been a revolution in thought, understanding and acceptance of a deviation from the norm.

Shouldn’t Andrew Solomon, given his identification with being a gay person, have realized the irony of the schizophrenia chapter? His portrayal of schizophrenia as dismal and chronic, just reinforces how strongly lobby groups like the Treatment Advocacy Center and NAMI have influenced the public understanding of mental illness. The misery crowd has blocked the public’s ability to see the common ground between gay rights activists and mental health activists. People with mental health issues, marginalized as crazy by TAC like groups, will not be effective advocates for themselves.

I’m looking forward to rereading the schizophrenia chapter and doing further posts on this subject. The author has some interesting observations that I would like to tease out.

NPR host needs stigma rehab and training

I like social worker Jack Carney’s exhortation to the mental health community: “Don’t mourn, organize!” We can all do our part to raise our objections and concerns when we feel that our rights and human dignity and those of others have been infringed upon. A very simple thing to do is to write letters and submit comments through the social media. The aim isn’t necessarily to change the mind of the author, the idea is to get the opinion and information out there for others, perhaps for the first time, to read and contemplate.

Here’s my contribution to changing the world, for today. National Public Radio has a show called “Fresh Air,” in which Terry Gross interviews all kinds of major and minor celebrities. In the show I listened to, Ms Gross interviews Mike White, creator and co-star of the Home Box Office series Enlightened, in which Laura Dern stars as corporate executive Amy Jellicoe, recently returned from rehab and wanting to change the world.

Rossa Forbes comment #24
Good interview, as I expect of Terry Gross, but I would like to point out how Ms Gross is perpetuating stigma of the mentally ill. I was horrified to hear her say to Mike White, that he couldn’t possibly be the same as those people he ended up with in the mental hospital, since his was a case of anxiety. “It’s not like you were schizophrenic or mentally ill,” she added. STIGMA alert! Since a discussion of the gay rights movement and discrimination informed a large part of this interview, it’s ironic that Ms Gross tripped up over perpetuating the same stigma that Mr. White’s father rose up against. Remember when non-gays were judged on how “gay positive” they were, and appropriately pilloried if they weren’t? Well, I would like to know how “schizopositive” Ms Gross is and what her beliefs are about “mental illness.” She appears to believe that anxiety, especially among talented writers, is not associated with mental illness. In his response, Mr. White talks about reading Buddhist texts for the first time and learning how to strive towards enlightenment. Mr. White would have been in good company in the mental hospital, where no doubt many of the “inmates routinely read these texts and others as a necessary part of their spiritual journey. So, how about a Fresh Air interview with Paris Williams, author of Rethinking Madness, PsychCentral’s most recent book of the month. From the review: “Another major point Williams makes is that the core issues in madness are not a struggle with an “illness” experienced only by some, but rather a struggle with the existential issues that we all face, such as being caught between a fear of being separate and a fear of being overwhelmed or engulfed by connection.”

Another study shows biological view of mental illness increases stigma

from Acta Psychiatrica Scandinavica
Article first published online: 13 JAN 2012

Schomerus G, Schwahn C, Holzinger A, Corrigan PW, Grabe HJ, Carta MG, Angermeyer MC. Evolution of public attitudes about mental illness: a systematic review and meta-analysis.

Objective:  To explore whether the increase in knowledge about the biological correlates of mental disorders over the last decades has translated into improved public understanding of mental illness, increased readiness to seek mental health care and more tolerant attitudes towards mentally ill persons.

Method:  A systematic review of all studies on mental illness-related beliefs and attitudes in the general population published before 31 March 2011, examining the time trends of attitudes with a follow-up interval of at least 2 years and using national representative population samples. A subsample of methodologically homogeneous studies was further included in a meta-regression analysis of time trends.

Results:  Thirty-three reports on 16 studies on national time trends met our inclusion criteria, six of which were eligible for a meta-regression analysis. Two major trends emerged: there was a coherent trend to greater mental health literacy, in particular towards a biological model of mental illness, and greater acceptance of professional help for mental health problems. In contrast, however, no changes or even changes to the worse were observed regarding the attitudes towards people with mental illness.

Conclusion:  Increasing public understanding of the biological correlates of mental illness seems not to result in better social acceptance of persons with mental illness.

No surprise here. Despite increased pushing by pharma, academia and physicians of the biological model of “mental illness,” “no changes or even changes to the worse were observed regarding the attitudes towards people with mental illness. The results of this study correlate with the Auburn University study, which concluded:

In general, the disease view did not improve attitudes, except in terms of blame. It did, however, tend to provoke harsher behavior. In contrast, the psychosocial view induced treatment no different from that toward normal others. The results provide little support for the claim that regarding the mentally disordered as sick or diseased will promote greater acceptance and more favorable treatment.

Now, I ask myself, why would anybody think that labeling someone as sick and diseased (a stigmatizing label to begin with) would improve other people’s tolerance of the mentally ill? It would improve drug sales, though. (Just a thought.) What would improve people’s tolerance of the mentally ill are effective non-drug therapies that allow individuals to thrive and take their rightful place in society – the quicker the better. This amazingly simple idea seems to have eluded many people who claim they are helping the mentally ill. Many jobs depend on having a steady, long term supply of mentally ill clients. Lack of effective therapies and over-reliance of drug therapies will ensure that a large population of the mentally ill will continue be be stigmatized.

Breaking the Silence on Mental Health

Today is World Mental Health Day. I took my dog and pony show to a lunch time presentation on mental health and stigma, given by the former Prime Minister of Norway, Mr. Kjell Magne Bondevik.

Prime Minister Bondevik briefly considered resigning as Prime Minister in 1998 due to depression. He was urged not to resign, but to seek treatment and make this known to the Norwegian public. Three and a half weeks later, he resumed his duties, having succesfully engaged in walking and talking therapy with his psychiatrist, who took him on long walks up the mountains. Medications were also part of this therapy. He received top drawer treatment being the Prime Minister, and a Norwegian one at that, but he was also suffering from a top drawer diagnosis, depression, a time-limited condition. More importantly, the public thinks it understands, and is therefore sympathetic to depression, because it is so easily relatable to sad events in one’s own life. Schizophrenia is not at all easily understood by the public. There are some people whose schizophrenia, like their depression, may be biochemical in nature and therefore can be “corrected” employing short term orthomolecular or drug therapy, but for a lot of people, the cause of the condition is higher up the food chain, so to speak, and related to the same things that make a depressed person, depressed.

I was madly scribbing some ideas to challenge his contention that people should be open and honest about their mental health problems. I think three and half weeks of major depression makes him a credible spokesperson, but I doubt he’s got the full picture of what a major mental health label will do for someone over the long term.

So, I raised my hand and said that anti-stigma campaigns were all well and good, but the cause of stigma is more complex. Why do people discriminate in the first place? I said that as a mother of a son with a diagnosed major mental illness, I would not be so open about opening up and I cited the Sheila Mehta (Auburn University) study*, which found that stigma is increased if people think you have a mental illness caused by a biochemical imbalance as opposed to a mental illness resulting from understandable events in a person’s life. Today, of course, everybody thinks mental illness is caused by a biochemical imbalance. I can run the numbers. This means that a large number of people are willing to discriminate against you.

I made my point. I sat down. Mr. Bondevik’s answer didn’t address my point about belief in the biochemical basis of the condition increasing stigma. He said it was everyone’s personal decision about how much they wanted to open up about their mental illness. Fine, sure, but the Mehta study has raised some provocative issues about stigma that need further thoughtful discourse.

People who know that Chris was diagnosed with a major mental illness (in this case, the S-word), from what they have said to me, think Chris is somehow fundamentally flawed, will always be a “burden” to some extent in Ian’s and my life, and they feel that as long as he stays on his medications he will be able to “cope.” Gee, Chris is doing well,” they may say, “the medications must be working.” Had I not blabbed away the diagnosis in the first place, and did not let people know Chris has been on medications, the Mehta study suggests that people would not single him out as different, and therefore not apply the same pessimistic outlook.

Mehta, S. , & Farina, A. (1997). Is being sick really better? Effect of the disease view of mental disorder on stigma. Journal of Social and Clinical Psychology, 16(4), 405-419.

Wanting to move on

Ian had lunch yesterday with a friend of ours who has known us since the time Chris had his breakdown. The conversation turned to Chris at one point and our friend enquired in a plaintive voice if Ian and I had joined a “support group for schizophrenics.” Ian felt indignant. “Well, no,” he retorted somewhat testily, “we no longer even think of Chris as “schizophrenic” and we don’t feel that we need support.” Our friend sees Chris regularly, and while it is true that Chris is not employed or actively involved in taking courses, our friend can surely can see that Chris is more or less back to “normal.”

But our friend doesn’t see that. He sees the label for the so-called disease, which says that Chris is a “schizophrenic.” He’s not alone. There are certain people with whom we hate to discuss Chris because we get that sorrowful look and tone of voice from them that implies that Chris is his label. When we express our confidence in Chris that it’s just a matter of time before he is ready to go back to university or take on challenging work, other people don’t know how to respond. They somehow “know” that this conviction of ours can’t be. We get a tone of voice that implies skepticism.

Ian said something else interesting, interesting because he doesn’t share my anti-medication bias. He said he wished that the doctors gave us the right message from the beginning about Chris, that he just needed time, probably about ten years, to build his personality. Instead, the doctors gave us the wrong message from the beginning, that Chris had this thing called schizophrenia, that was a chronic brain disease and that life as we and Chris knew it was permanently over. Well, life isn’t over for us. In fact, we’re enjoying it a lot, and we really appreciate the gifts that Chris brings to us on a daily basis. We think our three sons are just super young men and we enjoy them all. In many ways, life couldn’t be better.

The idiocracy of social specialization

Either because of greed, or an overspecialized view of the world, people allow that lens to color whatever impinges on their senses, to force answers to fit that view, rather that seek solutions without preconceived notions, or from other perspectives. That’s why a multidisciplinary approach to problem solving is catching on. (The First Domino)

My father was a radar technician during World War II who spent time in the jungles of Burma with the Royal Air Force. We heard few stories from the war, but one thing he did share was that when the radar didn’t work, he was expected to fix it himself in the jungle using whatever ingenuity he could muster. The Americans, on the other hand, would fix the equipment back at the base and parachute in the new radar equipment. My father admired the American approach. On the other hand, what would happen if one day the drop-off failed to happen? Nevertheless, when it comes to products, specialization seems to make sense.

There are plusses and minuses to everything. In my lifetime I have witnessed a steady increase in social segregation which is touted as “specialization.” It strikes me that it long ago reached the level of idiocy. Lateral, all-encompassing solutions seem rare these days. The elementary school system is a prime example of the trend to social isolation. In the eighties and nineties most of the kids in my sons’ classes wore some kind of label. There were “the gifted” and “special needs”. There was French immersion (segregating the ambitious middle class from the supposedly “less intelligent” children, poor children, immigrant children and the handicapped), there were these really specific learning difficulties that all seemed to relate to auditory and visual processing skills. We didn’t think to call it stigma, we called it “progress”.

The kids that were specialized were stigmatized by those who weren’t members of that particular group and vice versa. While nobody “seemed” harmed by this, it got the momentum going for seeing the world through a prism. And so we end up with doctors diagnosing “Body Dysmorphic Disorder” with a straight face.

It is hard to pinpoint where this school yard segregation all leads to because the graduates are dispersed across the population, but it is a disaster, I am convinced, when it comes to segregating mental health. The difference is that with a mental health label you get a drug and you further self-stigmatize by joining with groups of people with whom you share a “problem.” Buy a tee-shirt and proudly proclaim you’re bipolar or the sister of a bipolar (Glenn Close). How exactly is this going to decrease stigma? It totally takes the spotlight off the need for the medical profession to clean up its act by encouraging everybody to be abnormal and to roll in it. I have long maintained that there would be no stigma if people were encouraged to get well. Where’s the money in that?

I hope, as The First Domino suggests, that a multidisciplinary approach is catching on. I think Chris’s psychiatrist, Dr. Stern, gets it. She is now proposing some alternative healers herself.

A culture of low expectations

The other day I attended a lecture by a prominent psychiatrist. The topic was stigma surrounding the mentally ill. He had done an extensive study focused on people with schizophrenia. He found that often people with schizophrenia practice stigma against themselves and cited an interview he had with a schizophrenic man who believed that he could not work. “Where did he ever get this idea?” the psychiatrist asked, genuinely puzzled that the man operated under this belief system. I was impressed by this psychiatrist because it was the first time that I had ever heard a psychiatrist use the words “work” and “schizophrenia” in the same sentence. By “work”, I am talking about a full-time paid job, not volunteer work. I hope he was thinking the same. However, that he was puzzled about why his research subject would hold this opinion was troubling.

It is no surprise to the rest of us where this man gets the idea he cannot work. It starts with the psychiatrist, who generally has a gloom and doom attitude surrounding what people with schizophrenia diagnosis are capable of doing. If you want to see a brief look of panic/unease register on your psychiatrist’s face, try suggesting that you would like to get your driver’s license. Then, we move on to well known organizations’ and institutions’ websites that describe schizophrenia as “the most serious of the mental health disorders”. They talk about schizophrenia in terms of functionality, social housing options and quality of life, as if that’s the highest standard one can aim for. They talk about schizophrenia as a disease of the brain. They rarely, if ever, mention full time jobs. They talk a lot about hope, but I think our man can read between the lines. He has gotten the message right.