On The Road Again -- NAMIWalks 2011


It's that time of year again.  Across the country people with mental illness, our friends, family, care providers, even law enforcement officials are pulling on our walking shoes to raise money for NAMI -- National Alliance on Mental Illness.  Last year soldiers in Iraq pulled on their hiking boots and their 40 lb. packs and ran while NAMI San Diego walked.

So what is this all about?  Here, my friends, is my testimony.

A couple years ago, I wrote a post on holiday gift giving for your favorite normal.  I asked my spouse, What would be a good present for the family member of somebody with a mental illness?

She didn't even look up from her computer.  Without missing a beat, she said, A cure.

A cure.  I know that mental illness is a family illness.  The whole family lives with it.  But her words caught me.  What she wanted was for both of us, a cure.

It's something she can't give me.  I can't give her.  My doctor can't.  You can't give it to the person you love.

We can, however, learn to manage symptoms.  We can claim the very best lives we can live.  We can live in recovery. 

Peer To Peer Program

I learned about recovery from NAMI, from their Peer to Peer program.  P2P is a ten-week course taught by people with a mental illness for people with mental illness about what we do after the doctor hands us a diagnosis and a prescription.

P2P teaches us how to live.  It is why I bust my butt for this walk.  It's not a cure.  But it's a lot.

That first class, I heard that I am not alone.  The very first note I took said, More unites us (our experiences) than divides us (our diagnoses.)

Next P2P showed me the immense dignity of those who live with mental illness.  It made me proud to know and be known by and be in community with others who live with mental illness.

It supplied tools like dialectical thinking, mindfulness, relapse prevention planning, techniques for emotional regulation and getting a good night's sleep, strategies for staying safe and coping with hospitalization.

P2P gave me something to do when medication didn't give me a cure.

And it opened for me a path into my future.  It reminded me that I am an advocate.  That is who I am.  I still have an identity, after all

So I bust my butt for this walk.  It is how I give back.

NAMI Walks

Now, the first time I did a NAMI walk, to tell the truth, I was scared.  Would it be grim?  A protest and a wailing against what is not possible, what we have lost and what we have to face?

If you have walked for NAMI, you are laughing here.  You know a NAMI Walk is so -- not grim.  It's a party!  With balloons and babies and dogs, music, belly dancers, football players, great food.  In Johnson County, Iowa, the Old Capitol City Roller Girls lead off the walk.  In San Diego, you are likely to hear a didgeridoo.

Bottom line, a NAMI walk is a gift.  It's a public demonstration to our families, friends, politicians, our neighbors, coworkers, the people in our places of worship, the viewing public -- a public demonstration that we are here for each other.  We take a break from all that wailing.  And throw a whale of a party.

At the same time, we raise funds for the programs that help us help ourselves and one another, the things that nobody else will pay for, for people who have fallen off the bottom of the budget.  NAMI does the stuff that makes a difference the day after the doctor hands us a diagnosis and a prescription.

Team Prozac Monologues debuted last year, with results that were not too shabby.  We raised $2640.  Mazie's sponsors contributed $250 toward that total.  Helen is walking in her stead this year.  Sponsors can contribute in Mazie's memory here.

Why I Walk

Me, I am walking for everybody who used to be on a three month wait list for an intake interiew at the local community mental health center; but this year that became a six month wait list at the center the next county over.  I am walking for everybody who used to  be on a four year wait list for sheltered housing; but this year the shelter shut down.

I am walking for those who are not crazy enough to pull out a gun and get the sheriff to buy their meds; they're just crazy enough to sleep in the alley behind the homeless shelter after they have stayed their ninety-day limit.

I am walking for family members who go to work wondering what is happening at home with their loved ones, now that the day program is closed.

I am walking for the resident on call in the ER who has to send home the merely suicidal, while the flaming psychotic waits for 36 hours in the hallway for the next available bed.  And for the newly diagnosed and dazed person who just got released with not enough meds to make it through the weekend, to make room for the flaming psychotic.

I am walking for the young people I know whose brains are even now being damaged in a war that we got into for oil.

I am walking in gratitude for law enforcement personnel who are trying to figure out how to do this new job, and need new training, to take care of those who have been discarded so that the very richest people in the world can get a tax cut.  I am walking in prayer for those who get caught up in somebody's suicide by cop.

This would be the place to note that the co-chairs of Johnson County's NAMI Walk this year are Janet Lyness, County Attorney, and Lonnie Pulkrabek, County Sheriff.  Props to them and to the competition between their two teams!

I did say that the Walk would be a party.  So even while I am angry that so much suffering comes not from the illness, but from the neglect, I will nevertheless celebrate those who do what they can do.  (That sentence would be an example of dialectical thinking, by the way -- see above, the curriculum of Peer to Peer.)

I am walking in wonder and amazement at the strength of the human spirit.  I am walking in deep appreciation for those who have helped me personally, for peer teachers, support group members, care providers, friends and family.

I will be walking with tears in my eyes, that my son and daughter-in-law will travel from Madison to Iowa City to walk beside me.

I am walking on April 30, 2011 in Iowa City, Iowa for all these reasons.  And I am walking also for you, dear reader.  I ask you to support me in this walk.  Click here to make your tax deductible, safe and quick contribution to NAMIWalks Johnson County. 

Closing Shot

There are many versions of this song on Youtube.  I chose this one, despite the credits that run over it, because the ragged bunch of friends who sing it, some not sure of the words, illustrate the point.  We are a ragged bunch.  And pretty wonderful because of it.



The Scream by Edvard Munch in public domain
photo of Team Prozac Monologues by Judy Brickhaus
photo of homeless vet by Matthew Woitunski and used under the Creative Commons licencse
photo of New York City police officer by See-ming Lee, copyrighted and used by permission

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.

NKM2.org


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 
flair from facebook
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 

Mazie -- Run Free!

 Mazie came to us on August 1, 1996.

She left us on March 1, 2011

And in between she blessed us.

I wrote about Mazie a couple years ago.  She lived longer than we anticipated she would at the time.  She suffered a stroke a year ago, but recovered and went on to raise $250 in last year's NAMI walk.

Here is an edited version of that earlier post, with new bits in italics.




This dog reminds me of Mazie/Amazing Grace.  Except there are too many stars in the lower right corner of the constellation, a leg that she lost a long time ago.  Move those stars up to form her crown chakra.  For twelve of her thirteen years, people have watched her run and said, That's Amazing!

Therapy Dog

Mazie is a therapy dog.  Not officially, she never received the training.  Now she has renal failure and it's too late.  But everywhere she goes, she finds the person who needs her.  When I took her to visit the shelter during the Iowa floods in '08, she stopped to visit with each one.  After an hour, I was depressed and weary -- the start of another relapse.  I thought it was time to go.  But no, she pulled on the leash and told me she hadn't talked with that man who was isolating, sitting by himself under that tree.  And she had to hang around until the Red Cross worker got off shift, to share some grace with her, too.

People have to ponder a three-legged dog.  After a few years, I stopped making smart remarks to the same question I heard over and over. How did she lose her leg?  I came to realize that through her, people consider their own experiences of loss, and the consequences of loss, and the life she leads without even noticing her loss.

How did she come to be a therapy dog?  We don't know the before story.  We only know the after, the kindness of a farmer who went out of his way for an injured stray, a no-kill shelter that is very picky and does home studies before they let people adopt, a vet and staff who treat her as a queen, the strangers who are drawn to her and, I believe, bring their own need for gentleness to the gentleness with which they approach her.  And she responds in kind.

Disabilities And Heaven?

Will she get her leg back in heaven?  I don't think so.  On earth, her only handicap is that she can't pivot to the right at a full run without falling down.  I think her one wish for heaven is to lose the leash, so she can do what she loves to do, run like the wind in three quarter time.

I knew somebody who was born with a foreshortened arm.  It ended at the elbow with a stump of a hand.  She always bristled when some religious person reassured her she would be whole in heaven.  She said she already was whole.  And she was.

Maybe what heaven will fix is our lack of imagination.

Loss And Heaven?

What does it mean for those of us with mental illness to be whole in heaven?  All the life experience that makes us who we are includes the experience of mental illness.  Will we lose that?  Who then will we be?

All the loss in this world -- a friend is reading a midrash of Exodus.  In midrash, the rabbis explore the meaning of Scripture through story-telling, expanding and deepening the levels of the text.  In one interpretation of the burning bush, initially Moses refused the call to go free the Israelite slaves in Egypt because -- what about those who died while building the pyramids and were buried in the walls?  Who would let them go?

To Lose One's Memory

A psychiatrist once tried to reassure me about Electro-Convulsive Therapy, ECT.  She said that usually the only memory loss is of events immediately preceding the treatment.  And usually people are so unhappy before treatment that they are glad to lose those memories.

It was not a convincing argument.  Such an argument would be abhorrent to somebody who is JewishI am not, but it is abhorrent to me, too.  To forget is to lose one's people and one's self.  I don't want to forget.  I don't want to lose any of it.  It is part of me, even the pain.  I guess I want for it to mean something.

No, I don't.  I don't want God to explain it.  I want to ask God to answer for it -- like the Holocaust survivor who insisted he be buried in his Auschwitz uniform instead of the traditional Jewish winding sheet.  He wanted to stand before the throne of judgment wearing the evidence that would itself say, who is judging whom?

To Be Found

Maybe what I really want, for Mazie, for those lost in the walls of the pyramids, and in the ashes, and for those who are in such pain that they want to lose their minds, for all of us, is to be found.

Good-bye, sweet Mazie.  Run free.

The Road Map For Loonie Liberation


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

This is a preview of next week.  Me -- taking a mental health break.


photo of Mahatma Gandhi 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
image of red ribbon in public domain
photo of coffins of members of the 101st. Airborne in the public domain
photo of chocolate molten cake by rore and used under the Creative CommonsAttribution-Share Alike 2.0 Generic license
photo of Ryan White taken by Wildhartlivie and used under the GNU Free Documentation License
flair by facebook
photo of Thomas Insel, director of NIMH in public domain

Health Policy of Sleep

Pharma/Research/Medicine Industrial Complex

A psychiatrist friend directed me to PharmedOut.org, a  source for all things seedy in medical research, medical education, and the sale of pharmaceuticals.  I don't need to repeat what you already know about ghost writing research articles, how pharma gets around restrictions on bribes by paying doctors to "teach," the sample scam, etc.  I am not spending time this week on what I didn't know until now about the editorial/advertising relationship in medical journals, or that the drug companies are the major subscribers to these journals and give them to doctors, and are the major purchaser of reprints (at inflated prices) to be distributed by drug reps to doctors.  But it is more of the same.  Just thought I'd mention it.

We go round and round about this.  Still, every research article ends with a cry for more funding, which will come from just one source.  Every doctor gets everything he/she knows about medications ultimately from just one source.  Every friend and family member who wants to help repeats the message taught by one source -- Keep trying.  Translation: keep buying drugs.

Addicted To Big Pharma

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