Showing posts with label stigma. Show all posts
Showing posts with label stigma. Show all posts

Bad Mental Health Take on Autism - One More from Allen Frances

Before Mental Health Awareness Month draws to its nonconsequential end -- 

Allen Frances

New York Post has published a new interview with Allen Frances about how bad it is to receive a diagnosis, or as he puts it, become a mental patient.

Become a mental patient?

Some background: Allen Frances is a professor emeritus of psychiatry and behavioral sciences at Duke University. His fields of research were wide ranging, including personality disorders, chronic depression, anxiety disorders, schizophrenia, AIDS, and psychotherapy. [Note: not autism]. He served as the chair for the DSM (Diagnostic and Statistical Manual of Mental Disorders) task force, which published the DSM IV in 1994. He later became the chief critic of the DSM 5, which is a modest revision of his work.

In a nutshell--he didn't like any of the revisions.

As part of Frances's critique of the DSM 5, he wrote Saving Normal, subtitled An Insider's Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. His book was published one week before the DSM-5. Since then he has continued the themes of the subtitle.

In addition to my review of his book linked above, I have commented a few times on Frances's statements. I appreciate his concerns about Big Pharma's influence in the treatment of mental illness and inappropriate use of medication, especially in the case of mild depression. His periodic attempts to save normal, not so much.

A couple quotes from his New York Post interview:

Dr. Allen Frances told The Post that he is “very sorry for helping to lower the diagnosis bar.”

Now, Frances said, he fears his work “contributed to the creation of diagnostic fads that resulted in the massive over-diagnosis of autistic disorders in children and adults.”

Stigma Against Mental Illness

One of the themes of Saving Normal is that diagnosis exposes people to stigma. So it would be worrisome to him that so many people are now mental patients, newly exposed to stigma.

I'll grant Francis this point. Prejudice against mental illness is alive and well - and particularly dangerous when it is expressed in the medical field.

There is scant evidence that Stamp Out Stigma campaigns have moved the needle, except on the issue of depression. Judging by news reports, prejudice against people with mental illness has been growing. 

  • Recently, an ex-Marine is lauded as a hero after putting Jordan Neely, a disturbed man on a New York subway, into a choke hold for fifteen minutes. In two days Daniel Penny raised over $1.5 million for his defense against a charge of second degree manslaughter.
  • As politicians regularly blame mass shootings on mental illness, they also routinely reduce funding to address it.

The thing is, prejudice against difference does not stem from diagnosis. It stems simply from difference itself.

A Diagnosis of Autism

In the case of autism, let me suggest an alternative to Francis's view.

From the anecdotal evidence of many people finally diagnosed in adulthood, the diagnosis brings not stigma but relief. They had already been stigmatized throughout childhood. Not by a psychiatric diagnosis, but by the schoolyard diagnosis weird and the classroom diagnosis behavior problem. They grew up being bullied and punished because they were not normal - to use Dr. Francis's favorite word.

People diagnosed with autism in adulthood often already have other diagnoses, most commonly depression and anxiety. They sometimes have experienced suicidal thoughts or attempts. These are the consequences not of their undisclosed diagnosis of autism, but of the way they have been treated by others - on the basis of their difference which it does not take a psychiatrist to notice. It only takes a psychiatrist to explain.

Hence their relief - finally to have an explanation.

The NYP quotes the statistic that rates of autism in the US have soared 500% over the last sixteen years. This is a bait and switch statistic. The DSM 5 changed the definition of autism, combining profound autism, childhood disintegrative disorder, pervasive developmental disorder, and what was once called Asperger syndrome under one umbrella diagnosis, autism spectrum.

Whether or not combining these conditions with different treatment needs under one label was a good idea is a separate discussion. But the change in rates was not as drastic as the statistic suggests. The numbers for three separate diagnoses have been added to the first.

But it is not the first time Dr. Francis has played fast and loose with statistics to claim over-diagnosis. The statistic does not support his thesis of over-diagnosis because the sample population has changed.

Underserved Children with Autism

The article misses the most significant part of the story, reported in the journal Pediatrics. There are significant disparities in rates of diagnosis between white and black children and between affluent and poor children:

Black children were 30% less likely to be identified with ASD-N compared with white children. Children residing in affluent areas were 80% more likely to be identified with ASD-N compared with children in underserved areas.

The consequence of under-diagnosis is that, while rich white kids get services, poor black kids get placed in the school to prison pipeline.

There are real life consequences to under-diagnosis. Poor black kids should not have to pay the cost for Allen Frances's hobby horse.

More Next Week

So clearly, I have thoughts. Lots of thoughts. It's time to sign off for this week and promise more to come. But you are welcome to join the conversation by commenting below!

Prejudice, Not Stigma: How People with Mental Illness Get Crap Health Care

Eight years ago I published an article titled Doctors' Prejudice Against Mental Illness. It lays out the reasons why it is so damn hard for doctors to learn. Here is a paragraph from that original rant:

Similarly, people with other mental illnesses as well often do not receive routine standard of care for a whole host of conditions, including screens for infections, dental care, metabolic syndrome, even blood pressure checks, even while receiving medications that put them at risk for all of these health complications. As a consequence, the death rate gap between people with mental illness and the rest of the population is growing.

The link in the second paragraph is to a World Psychology article, a review of the literature documenting the crap health care that people with serious mental illness receive, with the consequence that we die an average of ten years sooner than people without mental illness.

The difference in lifespan is only slightly due to suicide. For the most part we die of the same things everybody else dies of, heart disease, cancer, that sort of thing. We just die sooner because our heart disease and cancers are not detected as early, nor treated as aggressively, as everybody else's.

Silence Kills -- The Stigma of Mental Illness Redux

It's Mental Health Month again. Out comes the stigma word, the pleas for understanding, the heart-warming whatever.

I am so done with stigma. Frankly, I am insulted that NAMI et al still use the word. Is Black Lives Matter about stigma?  It's dangerous to be either in the US, and for the same reason. Prejudice, people. We are talking about prejudice.

The following was first posted in July 2013. Alas, we are still trying to get our heads out of our asses. The Affordable Care Act made some progress, a little, toward mental health parity. Insurers had to get creative to deny us coverage. But this congressional session, it's all up for grabs again, whether our illness will get covered at all. And the prejudice of doctors -- don't get me started.

So from July, 2013 --


I don't use the s-word. I hate this title. I use it only because people who need this post will use it when they google.

I don't use the s-word. But here it is.

First from Google:

Definition of STIGMA

  1. A mark of disgrace associated with a particular circumstance, quality, or person: <the stigma of mental disorder>.

Doctors' Prejudice Against Mental Illness

One in four people in the United States meet the criteria for a diagnosable mental illness in any given year.  About half will develop a mental illness sometime in their life.  Allen Frances, editor in chief of DSM-IV wants fewer people, only those with the most serious illness, to be diagnosed to spare them the stigma of the diagnosis.  The chief mechanism to achieve his goal would be to change the DSM criteria, so that fewer people qualify.

This series began by introducing Dr. Frances, whose work has inspired it.  It continues to address the topic of stigma, what it means, where it comes from, how to respond.  Last week I defined terms, adding one that expands our frame.  Briefly, Merriam-Webster says that stigma is a mark of shame or discredit; while prejudice is injury or damage resulting from some judgment or action of another in disregard of one's rights.

I think it is important to distinguish between the two.  To do so, one has to clarify the context.  Stigma, when used by somebody who is the object of stigma, is the internalization of somebody else's prejudice. When it is used by somebody else, stigma is a mechanism of diversion that calls on the object of one's own prejudice to bear the responsibility of that prejudice.

So is Allen Frances trying to protect those whom he calls the worried well from being marked with shame or discredit?  Or is he creating a diversion that calls on people who are suffering to bear the responsibility for somebody else's prejudice?

Silence Kills - The Stigma of Mental Illness

I don't use the s-word.  I hate this title.  I use it only because people who need this post will use it when they google.

I don't use the s-word.  But here it is.

First from Google:

Definition of STIGMA

  1. A mark of disgrace associated with a particular circumstance, quality, or person: <the stigma of mental disorder>.

Introducing Allen Frances

Allen Frances was the editor of the DSM-IV, first published in 1990.  He is now the fiercest critic of its next major revision, the DSM-5.  For over three years, he has been blogging weekly to this end at Psychology Today.  This week I will summarize his steady drumbeat.  I hope soon to publish an open letter to him.

Frances' complaint in a nutshell is that the DSM-5 creates fad diagnoses and changes criteria of older diagnoses to medicalize a whole range of normal behavior and miseries.  The link lists these problem diagnoses and a number of the following points, in an article published all over town last December.

These issues have been discussed widely, in public and private circles.  I am not qualified to address each point, though I did give a series over to one of them, the bereavement exclusion.  The best of the batch, if I do say so myself, is Grief/Depression III - Telling the Difference, which got quoted in correspondence among the big boys.

Recovery - From What?

Recovery is the individual lived experience of moving through and then beyond the limitations imposed by the disorder, by the world around us, and even by the treatment itself.


Okay, the deal is, unless you know where you are going, it's tough to get there.

Recovery Defined as Escape from the Symptom Silo

The docs know where they want to go.  They want to get rid of your symptoms.  Your illness is defined by a list of symptoms, found in the DSM and measured by survey instruments, and when you score in the normal range, then you have recovered.

Which is sort of like saying that if you don't have chest pain or shortness of breath, then you have recovered from heart disease.  Cardiologists don't think that way.  They want to know the condition of your heart, not just your symptoms.

Real Mental Health Advocacy - We Have Begun

Okay, so I just blew away this week's post.  Sigh.

Instead, I will honor the people in Chicago, who have tried every form of education, conversation and persuasion they could devise to convince Mayor Rahm Emanuel not to close six of the city's twelve mental health centers.  Finally, they staged an occupation.  For seven hours, they held the Woodlawn Mental Health Center, while Occupy Chicago gave support from outside the clinic.

They are my heroes.

Read the remarkable details here.  The videos seem to be missing from the text.  Here is the link to the story as recorded in stages on youtube.

Grief/Depression II - Rise in Rates of Mental Illness

Are we really getting sicker?

A New York Times article, When does a broken heart become a diagnosis? sells papers with its usual technique - latch onto a fringe element and substitute good writing skills for substantive analysis.

I am all for good writing skills, and perhaps stumble in the same direction at times. But depression is my beat. So God willing and the brain permitting, I am going to beat this bit to the ground. Two weeks ago I discussed three contexts for the discussion, the cost of health care, the scientific value of the DSM and the hobby horse of the author featured in the Times article. I promised more contexts to come.

Are We Getting Sicker? - Context IV

James Wakefield's thesis is that we are turning natural human emotions, (the ones we want to get rid of, because they are unpleasant), into a diagnoses. His beat is depression, as well, but the Times is on this bandwagon with autism and no doubt other diagnoses to come.

Well, I grant some validity to the concern in general. Is it shyness or Social Anxiety Disorder? Is it artistic nonconformity or Attention Deficit Hyperactivity Disorder? Is it the sleep disruptions of normal aging or Overactive Bladder Disorder? Was it all those wings, doritos and beer you guzzled Superbowl Sunday (and most Sundays), or Gastroesophageal Reflux Disease?

Mental Health Day -- The Funner Version of Advocacy

I blog for World Mental Health DayLast week it was Mental Illness Awareness Week, according to NAMI.  So today it's World Mental Health Day, according to WHO.  The World Health Organization, that's WHO.

That's a week for mental illness, a day for mental health.  Whoever organizes these things must be reading my mood chart.

I cycle within cycles.  In the larger circle, I have been able to maintain a stable state for a while now -- the state of jaded, that is.  So I take up this week where I left off last week, continuing the repost of a series on the sorry state of mental health advocacy.  This second post takes a glass-half-full approach.

Not exactly mental health, but at least the upside of mentally interesting.  I mean, we got these diseases for life.  We might as well learn to make them work for us.

Mental Health Advocacy -- The Funner Version

Okay, last week was weird.  That's what you get for reading a mental health blog written by an Episcopal priest.  You never can tell when Jesus might interrupt with, No, what would I really do?

As it happens, that is where Gandhi got his program for freedom fighting, from Jesus.

First they ignore you.
Then they laugh at you.
Then they fight you.
Then you win.

There's a Lenten meditation for you.  Overlay Gandhi's road map on the birth, ministry, death and resurrection of Jesus.  Gandhi taught us to do what Jesus would do, what he really did do.

But not all of you are Christians.  Not all of you follow The Way.  Not all of you even follow my train of thought!  What does death and resurrection have to do with mental health advocacy?

Well, never mind.  The post stands on its own, as the tried and true program for addressing oppression, the institutional arrangements that support an unjust system.

This week's post turns to a different path, what we think of as stigma-busting.  But I have come to suspect that the word stigma itself conveys the stigma it is trying to bust.  It directs attention away from the stigmatizer and toward the stigmatizee.

No, what I am talking about is flat-out prejudice, the irrational thoughts and feelings of individuals.  Focus on the person who has irrational thoughts and feelings.  How can we help him/her get over these nonproductive and painful experiences?

This path parallels last week's -- we're all headed in the same direction.  But this one you can travel while wearing designer shoes.  In fact, designer shoes might just be the ticket!

Come Out, Come Out, Wherever You Are

First step, come out.

See, if all you know about African Americans are those cop shows, all you know about Islam is Osama Bin Laden, and all you know about people with mental illness is Jared Lee Loughner, then you are not going to want to live next door to a black person, let your daughter date a Muslim, or hire a person with a mental illness.

People want to stay away from people that they think are dangerous.  This is because our brains are hard-wired to help us survive.  This is a good thing.

The problem comes when people's estimation of danger is out of whack, when they think that a whole class of people is dangerous, and when those thoughts do not have a basis in reality.

People whose fears are out of proportion to real risk need our help.  They need evidence if they are going to change what they know.  You can cite statistics until you are blue in the face.  But the most persuasive evidence is personal.  They need a face.

What does Jared Lee Loughner have to do with your child's kindergarten teacher, the kindest, gentlest person you know?  Or your Uncle Charlie, funny, generous, hard-working?  Or your roommate from college, who really struggled freshman year, and still does on occasion, yet runs a successful business anyway?  Jared is one lost soul who didn't receive the help his parents tried hard to find, and whose story could have been so different -- as demonstrated by the evidence of all these other people with mental illness whom you know.

Remember these guys?  They are Joey Pants Joey (Pants) Pantaliano's bid to make mental illness as cool and as sexy as erectile dysfunction.

That's right.  Joey Pants (The Sopranos) has major depressive disorder.  And he wants the rest of us loonies to come out of the closet, too.  I described his No Kidding, Me Too campaign last October.  He represents the funner version of mental health advocacy.

Joey has a bracelet with the birds on it, a cute little way to identify yourself.  Go here to buy one.  If these bracelets catch on, then when you see somebody wearing one, you say, No Kidding?  Me, Too!  When somebody else asks you what your bracelet means and you explain, their response, one chance out of five, will be No Kidding?  Me, Too!  Or, No Kidding?  My Brother, My Boss, My Priest, My ... Too!

One brief exchange at a time, people learn that people with mental illness live and work and function and add quality to life all around them.  We are no more dangerous than anybody else.  That is not only a cold hard fact, it is also the experience of people who know people who have a mental illness.  And a number of us are rather fabulous!

Got it?  For those of you who are not ready to set a trash can on fire (last week's post on oppression), you can wear a bracelet.  You can come out and be one of many people your neighbor knows who have a mental illness and sometimes exhibit symptoms and usually get the lawn mowed anyway. 

NKM2 Needs Some Bipolar Help

It's a great idea, potentially cool and sexy.  But somewhere the program got hijacked.  Each of us has our abilities and our disabilities.  And Joey needs an assist, assigning the right task to the right section of the DSM.

That is Prozac Monologues' task for the day, to get these birds back on track.

To start: Joey's medallions come in 144 combinations of colors and finishes and a twelve page catalog from which to choose even more medallions.  My guess is he handed the bracelet job to somebody with Asperger's, who can see every potential option and wants to make each one available.

You always want to have somebody with Asperger's around to find the option outside your neurotypical box.  That person might redesign your computer platform, or notice the pothole that will break your axle if you don't swerve now, or find the resource you never dreamed existed, or restate the problem so the solution is both easy and joyous.  You always want to have an Aspie around.

My Aspie friend says, Give the Aspies the money.  Tell us the rules, and we will make sure they are followed.

But this medallion thing falls into marketing.  Go to the bipolar spectrum for marketing.

The Silver Ribbon Campaign

So maybe you have noticed there is a ribbon for every cause you can think of and many that you have never heard of.  A cloud ribbon for Congenital diaphragmatic hernia?

Nobody is in charge of this ribbon thing.  In our field we already have orange for ADHD and for self-injury, checked (they call it jigsaw) for autism, yellow for suicide, white for gay-teen suicide, green for mental health and for childhood depression, purple for dementia, silver for mental illness and for brain disorders.  A marketing nightmare.

Marketing 101: Get yourself a message.  Attach a brand to it.  Stick to it.

So we need a ribbon.  One ribbon.  One color that umbrellas all the rest.  Prozac Monologues here and now declares the color -- silver.  Just because I said so, that's why.

No, not just because I said so.  My eye is on the platform.

The Oscars.  The Emmys.  The Grammys.

We need a color that is Oscarlicious, that will stand out and look fabulous on tuxedos and those designer dresses.  We need a color that designers will design around.

AIDS awareness soared when the red ribbon became the de rigour fashion accessory at the Oscars.  The entertainment industry knew that AIDS was their issue, and they got on board.

Even more so, mental illness.  If suddenly tomorrow, the entire planet went neuro-normal, comedy would die.  Just die.  Ditto any other writing, music and set design.

So, one color for the bracelets.  One color that will take over the award shows and establish our brand.

Fire That Guy!

Next, the latest NKM2 PSA features solemn music against words on a screen about how few people with mental illness commit violent crime, alternating with video of police cars and ambulances at the sight of the shooting in a Tuscon shopping center.  WTF?!?!!  I don't know who is responsible for this marketing mess.  But fire that guy!  Or rather, channel his/her energies in a different direction.

In a nutshell: Confucius said A picture is worth a thousand words.  Maybe it was Confucius.  He usually gets the credit, sometimes Napoleon Bonaparte.  Anyway, a moving picture with *flashing police lights* is worth a whole lot more words than a mere one thousand.  It does not matter the teeniest, tiniest bit that the text says we are not violent.  The picture shows something very different.

There is nothing cool and sexy about Jared Loughner.  I don't want to live next door to him, either.

Recall NKM2 To Its Mission

Most of NKM2's videos feature depressed people ruminating about stigma.  It's what depressed people do best, ruminate.  Which is why they don't belong on camera unless they are acting.  Let's get back to cool and sexy! 

Mount Rushmore And Marilyn Monroe

So let's we put those loonie birds to work in a new PSA!

One bird says to the other, I have a mental illness.  The other: No kidding -- me, too!!

Then Joey says to the camera, I have major depression.  Abraham Lincoln answers from Mount Rushmore, No kidding -- me, too!  (Monty Python can do that moving jaw bit.)  Buzz Aldrin in his space suit chimes in, No kidding -- me, too!  Next up, J.K. Rowling, Where do you think the dementors came from?

Back to Mount Rushmore.  Teddy Roosevelt says, I have bipolar, to which a flying nun Patty Duke answers, No kidding -- me, too!  Charlie Pride can sing it.

Green Bay Packer Lionel Aldridge steps up to the line and says, I have schizophrenia.  Picture of John Nash and caption, receiving his Nobel Prize in Mathematics, with voice-over, No kidding -- me, too!

Jane Pauley, I have a mental illness.  Then pile on the animations, illustrations, faces speaking to the camera, No kidding -- me, too!  Harrison Ford, BeyoncĂ©, Patrick Kennedy, Ann Hathaway, Amy Tan.  Include an apple falling on Isaac Newton's head.

Joey's voice comes on again, on top of photo after photo of famous and not so famous people in daily life: In science, the arts, government, business, sports, people with mental illness make valuable contributions to your life every day.  Your teachers, doctors, clergy, barristas, mechanics, neighbors, coworkers, one out of every five has a mental illness.

And the closer -- surely somewhere in Marilyn Monroe's body of work, sometime that breathless voice utters those now immortal words, No kidding -- me, too!

Are we getting closer to cool and sexy now? 

Coming Out As Evidence-Based Stigma-Busting

But coming out is scary!  Bad things will happen to me if people know I have a mental illness!

I can't argue with that.  I don't know what will happen to you.  There are ways to protect yourself.  I expect that Prozac Monologues will address this topic in the future.  This post is on how to help prejudiced people become less prejudiced.  And the research supports me here.  The more experience the general public has with people who have mental illness, the less prejudice.

Notice, I said experience.  Not knowledge.  Knowledge hasn't helped.  Experience does.

Personal Experience Mitigates Prejudice

Here is a study that shows familiarity breeds respect.  208 community college students, of diverse backgrounds and ages, were asked about how familiar they were with people who have a mental illness, whether that exposure was from movies, documentaries, work with, work for, friend, family member, own life.  They answered questionnaires on their estimation of how dangerous people with mental illness are, their fears of people with mental illness and their desire for social distance (whether willing or not to work with, live near, or associate with people with mental illness).

Sure enough, the closer the contact, the less expectation of danger, less fear, less desire for social distance.  And note: when you are asked whether you work with or live next door to somebody with a mental illness, the real questions is whether you know that you work with or live next door to somebody with a mental illness.

Strategies For Reducing Prejudice

These findings are consistent with a large body of research over a long time about how people who are familiar with members of a stigmatized group have less prejudice toward that group.  The following paragraph is quoted from the report.  You can find references for each point in the original.

Social psychologists have examined several variables that are relevant to ethnic prejudice and that could be adapted for research on contact with and stigma surrounding persons who have mental illness.  One important variable that affects contact is opportunity: members of the majority must have opportunities to interact with members of minority groups if stigma is to be reduced.  Thus persons who have serious mental illnesses must have formal opportunities to contact and interact with the general public.  Other factors that augment the effects of interpersonal contact include treatment and perception of the participants as equals by members of the public, cooperative interaction, institutional support for contact, frequent contact with individuals who mildly disconfirm the stereotypes of mental illness, a high level of intimacy, and real opportunities to interact with members of minority groups.  Each of these factors suggests specific hypotheses on how contact between members of the general public and persons who have serious mental illness can be facilitated.

These citations are for ethnic prejudice.  One's ethnicity is usually more observable than one's medical status.  Gay and lesbian people have gotten the same results with the same strategies -- by bringing their membership in a stigmatized group to the awareness of their friends, family, coworkers, neighbors, fellow church members, golf buddies...

So Come Out, Come Out, Wherever You Are

All you have to do to reduce prejudice against people with mental illness is be one.  Out loud.  We need every one of you who possibly can to come out.  We need family members and coworkers and neighbors and friends to talk about you, too.  We need to start laughing at the stereotypes and at the people who hold them.  We need to be out loud proud of our recovery.

Because there is a lot at stake here.

Silence = Death

icon of Christ Pantokrator in public domain
photo of Mahatma Gandhi in public domain
photo of Dorothy's ruby red slippers by Alkivar, used under the GNU Free Documentation License.
photo of kindergarten teacher in public domain
photo of Oscar Su Sfondo Rosso by Idea go
photo of Harrison Ford as Indiana Jones by John Griffiths and used under the Creative Commons Attribution/Share-Alike License
photo of Mount Rushmore by Kimon Berlin and used under the Creative Commons Attribution/Share-Alike License
photo of Charlie Pride in public domain
portrait of Amy Tan by David Sifry and used under the Creative Commons Attribution/Share-Alike License
screen shot of Marilyn Monroe in public domain

Ignore/Laugh/Fight/ -- Mental Health Advocacy That Wins

If they don't want to employ you, if they are afraid of you, if there are four times as many of you in jail as in the hospital, then it's not just stigma.  It is prejudice and it is oppression.
The twentieth century offered a whole degree program in prejudice and oppression.  Others have made progress against what beat them down.  Though we are now stalled and falling behind, we can move forward when we adopt their methods.

The Map to Liberation

Mahatma Gandhi was not the first freedom fighter.  But he is the great theoretician.  He gave us the map.

First they ignore you.
Then they laugh at you.
Then they fight you. 
Then you win. 

Four simple steps.  The good news -- we have already taken the first.  Got that one down pat.

Liberation 101: 

We are in charge of the map.  The oppressor doesn't decide that oppression will end.  It endures until the oppressed decide that it will end.

What we have to do is provoke the next step.

Then they laugh at you.

Well, that's where we are stuck, because we are unwilling to be laughed at.  Last month's NAMI meeting was about Iowa's upcoming budget cuts.  Somebody said, When we complain, they say we are crazy.  I think she is a therapist.  She has that therapist look, if you know what I mean.

Therapists say the funniest things.  When we complain about how we are treated, they say we are crazy.

But we are crazy!  We start off ahead of all the other liberation movements that had to get crazy to take it to Gandhi's next step.

Think Martin Luther King.  Think Nelson Mandela.  Freedom?  People called them communists.  Either that or just plain nuts. 

Like these other movements, we have to find a spiritual taproot deep enough that we can endure being laughed at.  Just like the tree, standing by the water... 

The spiritual work will be impossible if we expect our care providers to lead.  They get twitchy if we talk spirituality.  I will address that work another time.  Right now I will sketch out how we break beyond First they ignore you, and move to Then they laugh at you.

What that means more precisely is, we have to do things to make people think we are nuts.  Like, DEMAND that we receive funding for research and treatment, DEMAND that we have the same access to health care as anybody else, DEMAND that we receive our health care in health care facilities, not in jails.

It's all about budget cuts right now.  Corporate tax cuts -- that's a given.  Corporations spent good money for our current crop of legislators, and they expect a return on investment.

So who will pay for these tax cuts, the people with mental retardation or the people with mental illness?  The Iowa State legislature has a committee that has asked us to decide.  Well, isn't that special.

We have to DEMAND that they change the rules of this game.  We have to REFUSE to play Survivor.  We have to refuse LOUDLY.

How?  African Americans sat down.  That is when they moved off Step One, when they REFUSED to be ignored any more.

So how about we lie down?

Lie In/Die In

Picture this.  The next Loonie Lobby Day at the state legislature, we don't get all showered and neatly normaled up and go have sincere conversations with our legislators who are really sympathetic (their brother has depression, so they know what we are up against, but their hands are tied by that pesky deficit...)

Instead, we stand in the rotunda and read off the names of their constituents who have committed suicide.  Each time a name is read, somebody falls down.  They have to step over our bodies to get out of the building.

Mental Health "Parity"
The Mental Health Parity and Addiction Equity Act would be better called the Swiss Cheese Mental Health Act.

1) Only large employers are affected.

2) If they can demonstrate it causes them financial hardship, they can get an exemption.

3) Parity is a laugh anyhow, if reimbursement rates are so low you can't find a provider who accepts your insurance.

4) The provisions of even this piss poor legislation that address reimbursement rates are now the top of the list on Congress's chopping block.

So off we head to Washington.  There are 13,000,000 million of us with serious mental illnesses in the US, including 5.7 million with bipolar, 2.4 million with schizophrenia and 7.7 million with PTSD.  The numbers add up to more than 13,000,000, because some of us get to double dip.  Piece of cake to pull together 34,000 to do a die-in around the steps of Congress, representing one year's worth of the deaths by suicide in the US.  We will drape American flags over the bodies of the vets.

Yes, we are dying out here.  Let them step over us.

How nuts are we to think we can turn around this systemic discrimination?  In this political climate?

Progress Report

Remember, When we complain about how we are treated, they say we are crazyBy now some of my readers seriously want me to reconsider Seroquel.  Others -- if you are still reading, your doc wants you to up your dose.  This means we are making progress.

At some point, laughter becomes a cover for scared.  Then it's time for the next step.

Then they fight you.

Remember, this is our map.  We are the ones who push it forward.  Nobody else will.  And if I am scaring you, look at it this way.  If we aren't scared already, we'd have to be crazy.

Until we change our advocacy, we will continue to lose psychiatrists.  We currently have less than half the psychiatrists we need to provide a even a shoddy level of token med checks.  In Iowa, we have one fourth.  While demand is going up (think Iraq, think Afghanistan), supply is going down, as retiring psychiatrists are not replaced by new doctors.  Why go that far in debt to get through med school and then choose a specialty with the lowest pay scale on the block?

Until we change our advocacy, we will continue to lose community mental health centers.  Remember community mental health centers?  The places we were supposed to go when they kicked us out of the hospital?  They are disappearing already.  Here are the Kansas numbers.  You can find the same story for any state you google.

Until we change our advocacy, we will lose what parity was promised.  Again, all employers have to do to avoid it is demonstrate that it costs them money to provide it.

Until we change our advocacy, we will lose even the programs that jails now provide.  Why should criminals be coddled?

Desperate Times Call For Futile Gestures

What were we thinking?  That public demonstrations would make a difference to cold hard facts?  Were we nuts?  (By the way, what have we been thinking, that talking would make a difference?)

After the strategies designed for Then they laugh at you prove futile, we up the ante.  In place of our bodies, we substitute urns full of ashes and dump them on the floor of the assembly halls.

In 1987 AIDS activists entered the New York Stock Exchange.  Seven people unobtrusively chained themselves and a banner to the rail overlooking the trading floor.  At the opening bell they unfurled their banner and blew fog horns.  They drowned out the opening bell, and prevented traders from trading, while they brought national attention to their demand that pharmaceutical companies stop profiteering at the cost of their lives.

Wall Street is our audience, too -- all the businesses that insure some of their employees but not us, all the health care companies that pay reasonable reimbursement to some doctors but not ours.  How about we bring ambulance sirens? 

A Day Without Mental Health Care 

Next we head to Main Street.

The 2004 film A Day Without A Mexican imagined what would happen if one day everybody in the US from Mexico, Guatemala, Honduras, Nicaragua, et al disappeared.  Economic havoc, that's what.  A few years later, the movie inspired a political demonstration.  Workers stayed home for a day.  In some places, restaurants simply closed for the day, unable to serve their customers.

So last week the Wall Street Journal reported a survey by Workplace Options.  The survey discovered that 41% of workers polled had taken 4-9 days off work in the previous year to care for their own, their friends', their coworkers' or family members' mental health issue.  Half work in offices with no benefits, support or services to deal with mental health issues.

They think they can't afford to provide services?  They haven't a clue how much it already costs them not to. 

There you have it, a National Day Without Mental Health Care.  Everybody who has a mental illness or loves somebody who does -- stay home.  I'm thinking Monday -- to make that moon connection, and maybe even disrupt Monday Night Football?

Going To Jail

At this point, we are littering, destroying property and generally disturbing the peace.  We are going to jail.

Everybody on a three-month wait list for an intake interview,

Everybody on a two-year wait list for the judicial review of an SSDI application,

Everybody on a four-year wait list for sheltered housing,

Everybody who had been doing okay, but stopped taking meds when the day program closed,

Everybody who can't afford the copay for that third tier prescription anyway,

Everybody who doesn't have health insurance at all,

Everybody who is homeless,

Go downtown and set a trash can on fire.

We Need Some Coordination Here

No, not everybody.  Jail is not a good place for people with OCD, PTSD, nor Borderline.  You all, your part is to run right down to the courthouse, legal brief in hand, to make sure the police department fulfills its obligation to get the rest of us our meds.

Prejudice And Oppression -- Some Observations

This post has been about fighting oppression, the institutional arrangements that support an unjust system.  Oppression is weighty.  It is fierce.  It does not respond to reason.  Power yields only to power.  The strategies and actions I have described are the power of anger that has been organized.

Our families and our care providers are just as scared as everybody else of our anger.  So they will not help us here.  They want to address prejudice, not oppression. 

Prejudice is the irrational thoughts and feelings of individuals.  Well, prejudice also needs to be addressed.  There is work enough for everybody.  Think of differential diagnoses as differential skill sets for the differential tasks of freedom-fighting.

That's coming next week...
image of prison bars from microsoft
photo of Mahatma Gandhi in public domain 
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forest photo by Maylene Thyssen used under the GNU Free Documentation license
sit in at Walgreen's in Nashville, Tennesee, March 25, 1960, in public domain
photo of die in casualties by Brendan Themes and used under the Creative Commons Attribution 2.0 Generic license
fist graphic in public domain 

It's Not Stigma -- It's Prejudice and Internalized Oppression

Stigma sticks to the persons stigmatized.  And sure enough, we are stuck.  Every time we repeat the word, we reinforce it.

Here is an idea.  It's not stigma.  It is prejudice and internalized oppression.

We gotta do something new, people.  We're dying out here.

Treatment For Mental Illness -- The Streets Or Jail

Ever since John Kennedy promised us more humane, community-based treatment for mental illness, we have been living on the streets.  Somebody with serious mental illness is four times more likely to be homeless than somebody without.

Or in jail.  On any given day, there are roughly 283,000 persons with severe mental illnesses incarcerated in federal and state jails and prisons.  In contrast, there are approximately 70,000 persons with severe mental illnesses in public psychiatric hospitals, and 30 percent of them are forensic patients.  Los Angeles and Cook County jails are the largest inpatient mental health facilities in the country.

No Respect=No Money=No Help

Does anybody out there live in a state where funding for mental health services is not being slashed?  Wasn't being slashed even before the last elections?

Now that we are talking money, how is this for a reality check on what we are worth -- from John McManamy's blog Knowledge Is Necessity:

In 2009, the NIH allocated $3.19 billion for HIV/AIDS research.  By contrast, research for depression (including bipolar) was a mere $402 million.

Million, not billion.  These are ratios that have held fairly steady over the years.  Approximately 1.5 million individuals in the US are affected by HIV or AIDS.  About 19 million in the US in any given year deal with depression or bipolar.  That translates to the NIH spending $2,013 per patient for HIV/AIDS research vs a paltry $21 per patient for depression and bipolar.  Putting it another way, for every dollar the NIH invests in an HIV/AIDS patient, depression and bipolar patients get one penny. [emphasis added]

Kinda puts things in perspective.

Funding By Death

But AIDS is fatal.  What about spending per death?

The number of deaths of persons with an AIDS diagnosis has stabilized in recent years at around 17-18,000 per year.  (Deaths of persons with an AIDS diagnosis may be due to any cause).  Since the beginning of the epidemic, an estimated 597,499 people with AIDS have died in the U.S.  Again, that does not mean they died of AIDS.  The figure includes heart attacks, cancer, accidents, suicide, etc.

In contrast, the Center for Disease Control reports that 34,598 people died by suicide in 2007.  We are pushing 900,000 deaths by suicide in the same period as the 600,000 people with AIDS who died for whatever reason.

But people with AIDS are now living longer.  Today, for every death of a person who has AIDS, two people die by suicide.  Far from stabilizing, the suicide rate has been rising since 1995.  [Side note: so much for that claim that increased antidepressant use caused the rate to go down.  There are more of us on them now than ever, and more of us dying anyhow.]

Depression is not the cause of suicide in all cases.  Research indicates that 90% of those who die by suicide have a mental illness.  That 70% have a mood disorder is a low ball estimate.  But that would yield 24,218 deaths by suicide among persons with mood disorders.

So the NIH spends $for 187,647/year for every death of a person with AIDS and $16,599/year for every death of a person with a mood disorder.

Oh, it's not so bad after all.  If we look at death rates, the disparity is down to $11 for somebody who has AIDS and dies by any cause to $1 for somebody who dies from depression.

Feelin' all warm and gooey inside now. 

No Political Price To Pay

Here is the politics at work.

The Ryan White Act was enacted in 1990 and named after a twelve-year-old who was kicked out of school because he had HIV/AIDS.  The act provides funding of last resort for poor people with HIV/AIDS and technical assistance to state and local organizations dealing with HIV/AIDS.  This is on top of the NIH research funding.

The money is not much, just over $2,000,000.  But it has held its own in the last decade, with modest increases every year until 2010.  Up for expiration in 2009, it was renewed by unanimous vote in the Senate and 408 aye/9 nay/15 abstaining in the House.

Now I am totally in favor of the Ryan White Act and the amount is stingy.  But I ask you to consider, do people with mental illness have anything like the Ryan White Act?  And can you imagine a legislator who thinks there will be any political price to pay for the cuts he/she is voting right now to services for people with mental illness, or for teaching laws enforcement how to handle mental health emergencies?

We could run the numbers for other diseases.  Breast cancer would reveal similar results.  Please, please understand me.  We are not on different sides here.  The AIDS example is especially valuable because we can draw lessons from what AIDS activists have accomplished. 

Stigma Busting Is A Bust

The problem is that people don't think of mental illness as real illness, right?  The solution is more education about the biological basis for mental illness, right?

No, not so much.  Researchers at Indiana University and Columbia University examined changes in understanding and attitudes in the US between 1996 and 2006.  Education has indeed increased understanding that mental illness is a biological condition.  54% of people knew that about depression in 1996, 67% in 2006.  Let's give the pharmaceutical companies some credit for their share, probably the lion's share of that change.

On the other hand, do they want to work with, socialize with, marry or live next door to us?  Nope.  Those numbers did not budge in the same time frame.  More telling for the task of designing stigma-busting strategies, there is no difference in attitudes between those who know that mental illness is biological, and those who do not.

In fact, those who understand the neurobiological basis for depression are more likely than those who do not to think that we pose a danger to them.

I'll kill 'em.  I swear, I'll kill 'em.  Just as soon as I can get out of bed.

What we are doing against stigma -- it's not working, folks.

How come?

Evidence-Based Stigma Busting

A study from the University of Kent in Cambridge, UK uncovered one flaw in typical stigma-busting efforts.  To bottom line it, how the listener responds depends on who the speaker is.

When allies (such as doctors or family members) make positive statements about people with mental illness, they are less credible than when people who have a mental illness speak for ourselves.  They is a word that doesn't cut it in stigma-busting, regardless of intention or attempt at sensitivity.  The authors cite previous research regarding other stigmatized groups showing that positive statements about them can be perceived as patronizing. 

This Is Good News

1. We were never worth much and now are worth less.

No, I mean it.  This is good news.  As my therapist used to say, The facts are friendly.  These are the facts, and they will be our ammunition.

2. We can do better.  In fact, the bar is set pretty low.

3. We have others, even among us, who have fought prior battles and can point the way.

Next week we take advocacy to the next level.


photo from La Brea Tar Pits by 3scandal0 and in the public domain
photo of homeless vet by Matthew Woitunski and used under the Creative Commons Attribution 3.0 Unported license
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photo of coffins of members of the 101st. Airborne in the public domain
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photo of Ryan White taken by Wildhartlivie and used under the GNU Free Documentation License
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photo of Thomas Insel, director of NIMH in public domain

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