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STIGMA: When your lived reality in the mental health system clashes with their dreamworld 05/21/2013

Posted by ALT in Activism, Mental Health News, Patient Rights and Advocacy.
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In last year’s blog “How to INCREASE stigma in mental health — fight stigma the conventional way,” we covered a few key points:

1. The disease model/explanation for so-called “mental illness” actually INCREASES STIGMA, while a psychosocial model/explanation slightly DECREASES it (good, replicable science has demonstrated this repeatedly)

2. When Glenn Close dresses her sister up like so: Glenn-Close

and films her standing in Grand Central Station proclaiming her “brain disease” for all to see, Glenn is actually demonstrating how BAD she is at fighting stigma. (couldn’t be worse, really)

Nevertheless, Glenn Close and her foundation (BringChange2Mind) are the media’s poster children for anti-stigma campaigns in mental health.

They’re in the news again today, releasing another PSA and (as always) keeping their stigma-fighting a careful blend of the specific and the vague.

The specific: Accept your diagnosis-for-life and TAKE YOUR DRUGS.

Jessie Close started showing signs of bipolar disorder in her early 20s… “I was given my first treatment in my late 40s and finally, the correct diagnosis — and medication — when I was 51. I’ll be 60 in July and I grieved for those lost years. There were careers I couldn’t handle because of it. I wish I was able to get help earlier.”

-          Jessie Close, sister of Glenn Close, wearer of “bipolar” t-shirt

The vague: What, exactly, is stigma?

What are foundations like BringChange2Mind really fighting for? There’s a brief reference to “social inclusion,” and of course a non-specific call for “laws to protect the mentally ill” (I hope that’s not a veiled reference to forced outpatient commitment!) – but that sure doesn’t tell us much. BringChange2Mind’s greatest impact so far has been the release of a PSA whose main message appears to be “psychiatric labels are LEGITIMATE references to actual BRAIN DISEASE, and to PROVE IT TO YOU we’re having them printed on t-shirts.”

(Also, buy our t-shirts for only $20!)

(Also, buy our t-shirts for only $20!)

Later in the article we hear from stigma expert Bernice Pescosolido: ”There are two parts to mental literacy, one is knowledge and the other is what to do about it.” She keeps it nice and vague – what knowledge? The knowledge that a biological model/explanation for “mental illness” is, not only untrue, but also MORE likely to produce stigmatizing beliefs and behaviors?

Technically a sociologist, Pescosolido has been doing “research” on this important topic for years. I decided to consult her corpus of academic publications. Somewhere, anywhere, can ANYONE tell us exactly what they mean when they say “stigma?”

Stigma= when lived reality clashes with their theoretical dreamworld

In a study of adult stigma towards children who have received mental health treatment, Pesconsolido and co-authors devised a four-question instrument to measure what they refer to as “stigmatizing beliefs.” After hearing a vignette that described the “symptoms” of a child with either depression or ADHD, participants were asked if they agreed or disagreed with the following statements:

(1) a child receiving mental health treatment would be “an outsider at school,”

(2) a child receiving mental health treatment would “suffer as an adult if others learned he/she had received mental  health treatment when young,”

(3) that the parents of the child in the vignette “would feel like a failure” if their child received mental health treatment, and

(4) that “regardless of laws protecting confidentiality, most people in the community still know which children have had mental health treatment.”

The more strongly you agree with the statements above, the more “stigmatizing” your beliefs about children’s mental health are – strongly agree with them all and you’ve got “high stigma.”

The authors assure us that “the reliability of this scale is .69”

Maybe they should have THAT printed on a t-shirt!

Oh yeah? PROVE IT: have it printed on a t-shirt!

So here’s what I’ve learned about stigma from Pesconsolido’s work:

Stigma is when you and your lived reality in the mental health system clash with the so-called anti-stigma activists’ dreamworld.

Because the truth is YES – to be falsely labeled as “brain diseased,” to be set apart from the rest of humanity for a unique program of dehumanization, the literal commercialization of your mental and emotional suffering, to have fundamental rights to bodily integrity, due process, freedom of association, etc. taken away – YES, this will make you an outsider.

To be so marked as a child WILL have serious consequences, even into adulthood, as many psychiatric survivors will testify.*

And NO, your confidentiality will NOT be maintained, not when the buying and selling of data about prescription medications is “commercial free speech,” not when there are EVER-SO-MANY dollars to be made from your compliance with a system that demands you accept your diagnosis-for-life and take your pills.

If recognizing these and other harsh realities means I have “stigmatizing beliefs” – so be it.

What kind of world are we fighting for?

Anti-stigma activists like Glenn Close & Co. seem to be fighting for a world extremely similar to our own, with only one key difference: nobody has to recognize the truths listed above, everyone has the literacy, the “awareness” to pretend, fully and convincingly, that the Emperor is indeed wearing the finest suit ever made.

If we all say it’s so, then it’s so… right?

No.

There’s also the option of fighting for a different world entirely. A world where mental and emotional suffering still exist (part of the human experience, you see), but where the response to them is grounded in a fundamental respect for the humanity and free will of the individual so suffering. (more on that HERE)

Dreamworlds — and their naked emperors — be damned.


* Here’s how Laura Delano’s lived experience of the mental health system clashed with the “anti-stigma” dreamworld:

When Psychiatry had first attempted to indoctrinate me as a young teenager, I was not yet vulnerable or hopeless enough.  When I eventually reached such a state, I surrendered myself immediately to a psychiatrist at America’s most prestigious private psychiatric institution, and became a full-blooded patient, passive and dependent and convinced of her brokenness, in a matter of weeks.  I believed him when he said I’d need “meds” for the rest of my life, and would have to learn how to “manage my symptoms” and “set realistic expectations” for myself.  I was sure that the “Bipolar” diagnosis was the explanation for all my problems, and that the prescribed “treatment” would be my solution.  I needed to be “Bipolar”, and I needed to want the antipsychotic, antidepressant, and sleeping pill prescriptions that were written for me at the end of that first session, because they gave me hope that something could, and would, change.  For, that’s what I wanted so desperately: a shift, some sort of momentum forward and out of the mire I was in.  With his MD and PhD from Harvard, my psychiatrist emanated this powerful promise for change.

Just what does it mean to say that I was indoctrinated into Psychiatry?

-It meant letting Psychiatry tell me who I was, and forgetting how to define myself.

-It meant surrendering my humanness and replacing it with the narrative of a “chemical imbalance”, of an abnormal “condition” that made me different from everyone around me.

-It meant that I never questioned anything I was told by a psychiatrist, psychologist, or social worker, because I believed that “mental health professionals” had science on their side, and expertise about me that I could never have.  After all, who would ever be so presumptuous as to question a doctor?!

-It meant sacrificing my agency, my sense of self, and my sense of responsibility and accountability to the DSM, to any proclamation made by a “mental health professional”, and to my “meds”.

-It meant that I stopped trusting my gut, following my instincts, or having faith in myself and my ability to feel big feelings or think intense thoughts, and that my psychiatrist was always on speed dial in case I needed an upped dosage or an extra therapy session when I sensed another “episode” coming on.

-It meant that I was fragile, “couldn’t handle” too much stress, was emotionally unpredictable (“labile” was a favorite word of mine), was “hypersensitive”, and was at the whim of my “disease”; indeed “being Bipolar” became my justifiable excuse for impulsive behaviors, fights with family or friends, and shirked responsibilities.

-It meant that most of my decisions began with, “My psychiatrist says that…”.

-It meant that I was Bipolar.

-It meant that I forgot how to stand up for myself and for my rightful place in the world.

-It meant that I no longer believed I should have full rights, as my “disease” made me less than human.

-It meant that I lowered my eyes in subservience before the shiny, gray-silver DSM-IV-TR, the Psychiatric Bible, my life’s definer.

-It meant that I worshiped at the altars of worn leather armchairs, praying to the Gods of DSM, Harvard Medical School, and Lexapro.

-It meant that I became convinced only Psychiatry could save my life and any scrap of sanity I may have had left; that if left to myself, I would surely perish.

(from Laura Delano’s brilliant essay: “Reflections on a Psychiatric Indoctrination, or, How I Began to Free Myself from the Cult of Psychiatry“)

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Comments»

1. R2DTew - 05/22/2013

Ah, the issue of stigma gets awfully close to the core of both conventional thinking about differentness and what might be called humane thinking.

Suppose we humans viewed differently what today are called psychiatric problems. I think it’s worth noting that historically and across cultures people have not treated differentness well. This starts early, or at least manifests early in life. Or at least it seems to. Where does bullying come from? Is it something acculturated? Or is it one of our apparently primitive habits or inclinations? The answer isn’t so clear, and good minds argue both sides of the question. Perhaps there is some degree of intolerance toward differentness that is inherent, something genetic or operating on a species level. The evolutionary biology people suggest as much when they talk about social creatures of every sort seeking out creatures similar to themselves. Some have made the point that this may well have a large component of imprinting that occurs as part of an individual’s initial experiences.(This effect has been found in species other than primates.) So our affinity for others like ourselves may well be part of our inherent makeup.

On the other hand, there is also almost certainly a good deal of acculturation, where the child learns how to view others by learning how the adults around him or her behave.

If both of these influences operate in each person, then it isn’t enough to change the political equation. Stigma by these measures is more than a political posture; it reflects something inherent in our being. Now, that said, this does not negate efforts to undo stigmatization, but it does suggest how deeply rooted stigma may well be, and so how difficult it will be to undo it.

Again, returning to the all too common phenomenon called bullying, how might else we respond to differentness? How might we guide our children regarding differentness? What can we show, what can we demonstrate, that will provide a model for the next generation in our everyday encounters with people who are different from us?

Certainly a core principle is respect, or at least granting dignity to every individual regardless of his differentness. We know this is possible because families often demonstrate it when one family member, usually a child, turns out to be different from everyone else, most particularly is functionally different. Close family members adjust their expectations to match what the individual is capable of. But it is remarkable that people outside the family often struggle to do the same thing, and the reason appears to be simply a matter of experience. Having an extended experience with someone who’s different allows for an adjustment of expectations — arguably, an enlargement of expectations — that grants dignity and worth to a person who functions differently. We see this happening in various cultural contexts today — race, gender preference, even religious orientation. Perhaps the same can be granted to people whose way of thinking and behaving (reacting) is different. I think it’s more difficult with this latter group because their differentness touches aspects of identity about which we are often unconscious.

An analogy seems useful: people who have grown up and lived in one culture and not had many encounters with people from other cultures often, when embarking on foreign travel, particularly to more exotic places, suffer a sort of culture shock when they realize that people can live together and be individuals in ways completely different from what they have known for their whole lives prior to their travel. It seems there is a similar foreignness embodied by people who are psychiatrically different, but unlike some distant culture, people with so-called psychiatric conditions have no distinct culture, and certainly no territory that can be visited and experienced. Perhaps technology of communication will bring together people who today are labeled with psychiatric diagnoses. Certainly there are numerous forums and support groups, but these people remain isolated from one another in most every way except for online chatting although immersion environments like Second Life may provide a quasi-milieu for them.

But of course thinking of things this way is somewhat akin to putting people in a zoo, making differently functioning citizens into specimens. There is also the not small issue of what might be called cultural respect including cultures trying to maintain their identity in the face of scrutiny by and interaction with outsiders.

However, this way of looking at psychiatric differentness fails to acknowledge one of the most distinct aspects distinguishing people who understand they have a psychiatric condition, namely, that how they interact with others, including others thought to be similar to themselves, can be remarkably dysfunctional. A good deal of psychiatric differentness involves how differently people interact, or fail to interact. This is to be distinguished from self perception and sense of identity although of course these aspects all influence one another.

Now what I have here called dysfunctional might fairly be called different-functioning, but there appears to be little evidence that the different-functioning can interact productively. Arguably, there have been few experiments or situations where the interactions among a group of psychiatrically defined individuals have been examined. At best these situations occur today in inpatient facilities with marginal benefit to any of the participants — experiences contradicting this impression would be an interesting riposte — and pretty much the only place the psychiatrically different gather outside of institutions is in recovery groups where the focus is dealing with the attraction of intoxicants. Has anyone ever heard of a social group for people diagnosed as bipolar, or for people diagnosed as schizophrenic? If such groups exist, they are rare and largely out of sight even to potential members.

It should be noted that what are currently called bipolar conditions, and to some degree learning disabilities, include quite different modes of functioning, one of which is quite dysfunctional while the other can be remarkably productive and successful. Psychotic disorders only uncommonly benefit those who have them — certain artistic and cognitive occupations come to mind.

All of this is to make the point that the problem of stigma is a profound and complex issue within any search for a more dignified and supportive response to the psychiatrically labeled. Certainly it’s fair to highlight the economic exploitation of differently-abled persons. But how such people can otherwise integrate their lives with the so-called normative culture remains unaddressed by personal or collective outrage about the abuses of the psychiatrically-labeled. And to the extent society is driven by economic forces, it’s fair to say that the “resource” of the psychiatrically different has yet to find a way to invite investment by the rest of the culture. So far, the larger culture’s response to the psychiatrically different has been protective, defensive, and isolating. Only the anguish of the different, and their family members, reminds us that work still needs to be done.

2. Anonymous - 05/23/2013

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